Journal History

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Sunday, December 23, 2007 9:57 PM CST

Happy Eighth Birthday in Heaven Carl!!!!!!!!

It is hard to imagine Carl celebrating his 8th Birthday had he still been here with us on earth. I can try to picture what he would look like, probably just the same only taller, and maybe huskier. When Carl left us he was quite thin, and only about 30 pounds. Little Cara was 25 pounds the last time I put her on a scale. She is quickly catching up to the size we remember Carl to have been. I wonder if Carl would still be playing with his tractors, and favorite trucks and cars? I am sure he would be busy playing with and entertaining Cara and helping her come up with cleaver ideas :0) She does come up with things on her own, and we do believe Carl is active in her life.

A couple of weeks ago, I was Blessed to receive the Best Christmas gift possible, straight from Carl. I have kept this to myself, but thought I would share with you to hopefully help others, and to bring peace and love to others that have been touched by Carl's journey.

Here is a piece from an April journal that explains how this whole mission of Carl's started.

April 19th 2007~
On Easter Sunday when we were all sitting around talking, Auntie Janet told us of something Amazing that happened a week and a half earlier. A couple of girls she knows, one who knows of our family, and has met Carl through Auntie Janet, was the messenger, as this all played out!!! These girls went to a psychic medium for a reading, hoping to communicate with their recently crossed over loved one. The psychic was receiving an energy, and started asking them questions to see if they could validate who was coming through to them. Here’s a close recollection of what happened: Psychic..”Did you have a little cousin that crossed over?” Girls…”No” Psychic..”A little boy about this tall…He was very sick?” Girls…”No??” Psychic “ I’m getting that his name starts with a “C” ?” Psychic “He is standing right between you two” The girls started thinking and after some thought, it occurred to the one (who knew of Carl) She said “Oh Carl Robinson!!!” Psychic “Yes” Carl somehow came through to these acquaintances, who where at this reading, trying to connect with someone else! He must have known that his message would find it’s way to our family and maybe give us some Peace and Hope!! Carl apparently didn’t say a lot, but what I was told was that he wanted to say “Hi to everyone” “He Loves us” and “He likes it when we talk about him”

To me, what this all validates, is that Carl is with us, he definitely spends time around us, and he hears us when we talk about him!! And he likes to hear us talking about him :0) He must have received our greetings that we sent to him through Grandma and Grandpa Robinson, as they were passing, Grandma in November, and Grandpa just a month ago, Which was to say Hi to Carl and tell him how much we love him and miss him!!! There are so many things I would like to tell Carl, and so many things I would like to ask him too. But I am so Happy that he somehow made it through, to get this message to us!!! I do believe he has been trying to connect with us, as there have been many other signs that he has sent us in the past little while!! When we are least expecting something, we look at each other, smile, and know that our little Angel is making a connection! We miss him so terribly, but it is comforting to know and believe that he is around us and that his Love still lives on and he is letting us know that!! I also think that I can sense his presence many times, when I know that he is here with us!! I do talk to him quite regularly, but it will certainly feel different now, knowing that he is very much present and listening!!!

This was the best Easter gift we could have received!!!


Well an Easter gift turns into a Christmas gift!!!! After eight months of pondering this knowledge, and wondering what to think and do? I finally (by the complete orchastration of events, via Carl) made it to this same lady for a reading!!

Cousins Jenny & Jessie and I went together, on December 14th and loe and behold, Carl Came through with a Strong Engery which held for nearly 30 minutes.

He was coming through with Grandma and Grandpa, which validated that they are all together on the other side!

He wanted to say that he is not in pain anymore.

He was rubbing his head?? I believed this was to talk about his loss of hair/cancer, but he said that he didn't mind when he didn't have hair, and that he often joked about it :0) We acknowledged this, and brought up that he was called baldy!! :0) (And we know how he loved to call Justin Baldy!!)

The psychic would pause and try to read/see his signs and translate to messages. Some things were not quite clear? One of those was that she saw him sitting on the floor pulling off his socks? I can't remember his feet or socks being an issue? I do however believe he was trying to talk about Cara, because she always pulls off her socks, and just a day or two before this reading, she was sitting on the floor next to me pulling off her socks, and proceeding to pick toe-jam :0). She also validated that Carl and Cara do communicate, and that she always will!! She said that they made a pact to!! The time of day when he connects with her the most is when she is going to sleep, and right before she is waking up.

The validation that blew us away most, was when she asked about a sliding glass window? She said Carl was showing her a window? I didn't know what this was about? Then she said "This is going to sound wierd, but...Was there a bird that flew into a glass window?"

Oh my gosh, he was talking about Jessie's wedding (The Dove Release) Which was this past September. For those of you that were not there, we brought doves for Jessie and Dustin to release after their wedding ceremony in front of the church. One of the doves flew straight up and right into the glass window in the front of the church!!! At the time Tom and I were mortified, and disgusted that this had to happen to Jessie and Dusty!! This was also an important validation, 1. to let us know that he was indeed present at the wedding, and 2. this was something he could bring up that all three of us, would definitely know what he was talking about!!! And thirdly, this validates to me, that Carl knows about our Doves (Carl's Angel Wings) and that he just may be involved with some of these crazy Dove releases :0) or else he just thinks it's humerous when they don't perform as we hope they will :0) Maybe he can help them find their way home better ;)
Insidently, one of the Doves that was released for the wedding was one of the birds born at the zoo (from Carl's Memorial there) It had gotten out of the cage during a feeding one day, and spent some time flying over Redwood, but did keep returning to the top of the cage in the park! The zoo staff finally caught it and was able to return it to the cage, but in the process, it now has become a homer to the zoo!! So anyway, that Dove homed back to the zoo. They guys watched for it to return, and it did, so they called us and we came down to get it to bring it back home. (This was after the zoo animals were gone for the season) And to think that Carl knows all about his birds!!!!

Here is a picture I took, right before the window slam happened!



After she brought up the bird flying into the window thing, she said that Carl was showing her the windex commercial where the bird flys into the clean window!!! What a Hoot!!! We laughed, and I mentioned how he must have thought it was funny too :0) And she did say how he does have quite a sense of humor, and is such a vibrant energy!!! She could tell he also had a bit of an ego, as he was very proud of himself for orchastrating the whole thing of how I found out about her (at this point she knew nothing of us, and didn't remember the previous reading of the other gals in April) She also mentioned how if he could he would walk around and pat us all on the head!! :0) Now can't you just see him doing that!!!! That was so very much Carl coming through!!!

She said that Carl was very spiritual right from the get go, and when Carl would be day-dreaming, that would be when he was connecting to the other side. He said that when I am day- dreaming, is when he can easily connect with me, and that he knows that I can feel when he is around.

I know I am forgetting some of the other things that were said, but the dove thing was so amazing to us!! She also kept commenting on how his energy is so very strong, and how he stayed with us for so long!! She said that usually doesn't happen. When it was time for him to leave, he didn't just quickly fade, she said he slowly left and was waveing. She said he made a sign of a kiss on the cheek. Of course we were all including her, in tears at this point. Jenny grabbed the kleenex box and started handing out tissues to all of us. We wiped our tears through smiles and laughs, as we tried to fatham what just happened. We did have the session taped, so that we could later go back to re-listen. We played the tape for Tom when we got home, also wowing him to tears. One other thing said towards the end was "noodles"?? She asked what noodles could mean?? I mentioned that Carl loved Mac n Cheese? She said "No it has to be somehting significant, that happened this past week, or still will be happening" when we got home, guess what Tom was cooking on the stove?? Noodles!!!

What Carl wanted to say was Thank you for making all my dreams come true! He had a wonderful childhood, and felt so loved, and he knew that and felt so loved and he was told that so much! He said that he didn't like being sick, but liked all of the attention he got :0)

After Carl faded, and we all wiped our tears, we began talking more. We told her how we actually did hear about her, and how Carl had come through in another reading for these girls in the spring. She again assured us that Carl planned this whole thing out, and made it all work and arranged this!!

She talked about how he is with us and around us, and how he knows what is going on in our lives. She talked about how loosing a child is the hardest thing a person could ever have to experience. But how our loved ones are always with us, and how this reading should bring comfort, not only to me but to Tom as well. Oh and the other kids too!!! Towards the end of the reading, Carl wanted to acknowledge all the kids, he started with "B" she asked who has a B name? That would be Bryan!! He kept going and she knew that he had three other siblings that he wanted to mention.

We were very Happy that Carl came through, and I do feel a sense of Peace knowing that Carl is well and still with us in his own way!!

A couple of days later, I woke up in the middle of the night. I was standing in the kitchen, reading a direction booklet for a new parafin hand wax warming deal that I got. And without even thinking of Carl at the moment, I heard a far far off voice calling "Mom" I stopped reading, looked up, turned my head to listen closer, trying see if one of the kids was awake calling me, but they were not, they were all sleeping soundly. I smiled, and realized this (Mom call) sounded like a little voice I remember... just trying to get my attention, to let me know he was there!!!

This was the Best Christmas gift we could have received!!!!




MERRY CHRISTMAS!!!!

We can't believe Christmas is here already!!! Today we finished up shopping, wrapping, and addressing more Christmas cards. I could still use a couple more weeks to get ready :0) Thank all of you for your Great Christmas cards, Photos and letters!!! We always enjoy reading all of them, and seeing your families grow up too!!! Here is our 2007 Family photo ~



We were so thrilled tonight to open up our emails and find a wonderful photo of our friends from Spain!!! Here is sweet Jorge & Alba, Carl's buddies from the Rochester Ronald McDonald House!!



It is always good to remember, and be remembered by those we Love this special time of the year!!

Have a Beautiful Christmas in His Love

Isaiah 9:6-7
(6) For to us a child is born, to us a son is given; and the government shall be upon his shoulder, and his name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. (7) Of the increase of his government and of peace there will be no end, on the throne of David and over his kingdom, to establish it and to uphold it with justice and with righteousness from this time forth and forevermore. The zeal of the LORD of hosts will do this.

Love & Peace
Kelly & Tom
& Family


Saturday, December 8, 2007 11:03 PM CST

Santa Visited Franklin today!!!!

Cara was not as bold as she usually can be :0) She did not want to be by Santa. Kody & Kaylee were there too, and both enjoyed meeting Santa!!!

Make video montages at www.OneTrueMedia.com


Thanks for your Prayers for Grandma Murphy!! She came through surgery well, and is recovering nicely!!

Check back soon for more updates!!!

Love & Peace
Kelly


Sunday, October 28, 2007 9:28 PM CDT

Nov 28th,

Just a quick little note to ask for Prayers for Grandma Murphy who is having surgery tonight. After some tests, a mass was found in her colon. She will be having surgery this evening. She is Uncle Clair's mom, and has been a very strong healthy woman who has overcome so much and keeps on ticking, kind of like Carl was our little energizer bunny for so long!!! :0) Thank you and God Bless Grandma Murphy as she is in HIS hands.

A very special Thanks to everyone for remembering Carl on his Eternal Life Date (11-26-04) the third anniversary of his Birthdate in Heaven!!! It is wonderful to have him mentioned and remembered, as he is never ever forgotten in our hearts. There is not a day we wake that we don't think of Carl, or a day we go to bed without thinking of him as we drift off to sleep. On Monday the 26th about noon my cell phone alarm went off. It startled me as I was driving around delivering mail at the time. I looked around to see what was going off in my car?? I first thought it was my scanner, as it can sometimes start beeping if I don't complete a delivery scan within a certain timeframe, allerting me to finish my entry. It was not my scanner, so I wondered, if I had a package that had some kind of a timer or alarm in it? Then I picked up my cell phone, and quickly discovered it was indeed my cell phone alarm going off!! It said "Remember Carl" I smiled because Sydney had set my phone up with this message :0) I also smiled because right as this was all happening, I was already in the midst of a Carl thought, which is a pretty normal thing in my daily schedule. In fact it would be kind of hard to catch me unaware with a reminder to think of Carl!! He is with us ALWAYS, he is in our minds and in our hearts forever.

Thanks for your love and friendship, we are forever Blessed by your presence in our lives.

Love & Peace
Kelly

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Thursday November 23rd

Wishing all of you a very Happy and Blessed Thanksgiving Day & weekend!!!

We enjoyed a very nice day with family here today. Starting out with an early drive to my folks with Turkey and fixin's loaded up in the car. It was early and dark, chilly but tranquil as the sky began to spit out pretty white flakes of snow. I looked up, breathed in the moment, and wondered if perhaps it was a little sign from Above, to let me know I was not alone.

We spent the first part of the day with my folks, at their place. My Dad in his Glory watching the Green Bay Packers!! Then we joined the Robinson crew in Franklin for desert, and great laughs as we visited with everyone there, then watched a couple of our home movies. One of them being Grandma Phyllis' 80th Birthday Party!! This was actually the first tape filmed from this new Sony Handy Cam we got this year (2000) It was great to see how we all looked and how much we have changed. The kids all looked so little :0) Carl was just a baby, getting ready to start walking. Very precious memories!!!

I have been trying to find a method/system, to capture and convert my old (analog/video 8) tapes to digital/DVD to save and preserve them. And so to be capable of sharing priceless footage of Carl on this webpage too!!! Pictures are wonderful, but it is so breathtaking to see and hear the voices of those we have lost.

On the very beginning of this first tape is Carl and Sam at bedtime, both in cribs at the time. Smiling, giggling and jumping up and down, as we were encouraging them to "not" settle down but to entertain us :0) It was very cute!!! Also how amazing it is that Carl and Cara look so much alike!!! Some even commented that they thought they were watching Cara.

At daycare, Linda and the children talk openly and frequently about Cara's brother Carl. And oh how she seems to know him as if he is right here with us, (which we believe he always is). Isabella asked me on Tuesday if Cara could wear her little t-shirt with Carl on it, the next day! :0) So that she did, and we also brought along our DVD of music and pictures that Uncle Clair, Jenny & Jessie helped to put together right after Carl died. Some of the little ones do remember Carl, and know that he is Cara's brother!! Linda said the kids were all glued to the TV watching the DVD. At the end is a little clip from the cemetery (dove and balloon release) Linda said they were so excited saying "This is when he went to Heaven!!!" :0) How Precious!!! And how wonderful for Angel Carl to be acknowledged and shared. I can't tell you how much this meant to me!!! I know that Carl is watching over his little sister, and all of her little friends.

This week we are also remembering a year ago when Grandma Phyllis Robinson left us for Heaven, and then that same week, our Dear cousin Freddy from NY. We are not sure where this past year has went? Funny how time continues to pass(fly) by. We know they are in a better, happier, unimaginably beautiful place....It is just that we miss them so very much, and we always will.

Today we are Thankful for so many Blessings!!! We are especially Thankful for all of our family and friends that have come along on this journey in our lives. With each day, we realize how much we all need and flourish from the Love that binds us all together. A gift from God to remind us of his Love.

UNTO thee, O God, do we give thanks, thy name is near thy wondrous works declare. Psalm 75

Love & Peace
Kelly


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Here it is!!! The Minnesota Beef Expo Montage from Oct 19-21 2007

It was a Great experience for the kids, we all had a wonderful weekend together!!! All of them did very well, and Sarah "Rah Rah" won Champion Angus Prospect Steer!!!! Congratulations to Sarah and all the kids for their Great effort!!!!


Make video montages at www.OneTrueMedia.com


Thanks for checking in with us :0)

Love to all
Kelly



Happy Halloween to everyone!!!!!

Here is a little montage "Trick or Treat" featuring our little sweetie Cara Joy!! Today we got her in for her 18 month photos :0) My Mom, Grandma Greer, has been guilting me for about 10 months for not bringing her in for her 12 month photos :( So today Sydney, Cara, and I picked up Grandma and brought her right with us to be there to see Cara have a professional sitting for her 18 month (Halloween) photos!!! It was alot of fun, and Cara enjoyed making fools out of all of us as we tried to weasel smiles out of her! She kept giving us this "You have gotta be kidding" look, and then getting up and running out of the set area giggling. Finally we gave up on the silly age old tricks, and got her smiling cute with some "Im gonna get you" threats :0) She did know how to trick us!!! It was a Hoot!!! Enjoy!!!

Moved montage to upper page



Have a safe and Happy Halloween!!!! Check back soon for more pictures!!! I am also working on a montage of photos from last weekends Minnesota Beef Expo!!! The kids had a great time, and wonderful experience showing a few new animals that will join the 4H project for the county fair 2008!!!!

Love & Peace

Kelly


Thursday, October 4, 2007 11:30 PM CDT

October 8th!! Happy Columbus Day!!!

Just added another little Montage!! We went to the Holmberg Apple Orchard on Sundey (just us girls) and really enjoyed our time there!!! In the last video clip on the Montage, Cara had come up to me with a dandelion. I was so surprised, as I was not even thinking about Mommy Flowers. :0) I think Carl was just letting me know that he was with us too!!!

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Hello to everyone!!!

It is definitely Fall, and we have been having some very nice weather here in MN!!!! We are trying to grab each nice day while it lasts, and enjoying our work and play outdoors!!!

Our Niece Jessie and her sweetie Dusty were married last Saturday!! We wish them all the Happiness and Love to last a lifetime!!! God Bless you both as you start your new life together!!

Here is a little photo montage I have put together, with many Fall pictures that we hold dear to our hearts. The song is Friends by Michael W Smith. Enjoy!!!!



Make video montages at www.OneTrueMedia.com


Hope you are all having some pretty colors and warmth wherever you are, and getting outdoors too!!!

Love & Peace
Kelly


Sunday, August 26, 2007 4:15 PM CDT

Today is September 18th!!!

HAPPY 20TH BIRTHDAY BRYAN!!!!!!!!!!!!!!!!!!!!

Just a quick note to wish Bryan a very Happy 20th Birthday today!!! I talked to Bryan this morning and he is doing Great!! He was getting ready for school. (Attending St. Paul College) After school today Bryan will be heading to Humboldt High to help coach the Soccer team!!! We are very proud of Bryan for all of his hard work and accomplishments!!! And for keeping a Great Possitive attitude, and never giving up!!!! God Bless you Bryan, you are a Special young man and you have been Graced by the Lord to do wonderful things in your life, and as you say "You want to help others" You will and you will shine in whatever you do!!! We Love you so much!!!!

I am sitting in the Library today typing this note, as our computer is in the shop getting fixed. Not sure what has happened, but possibly the Norton Virus protection program is responsible for the problems! I am having all of my files (pics and documents) saved from both my current hard drive, and our previous computers hard drive! Many precious pictures from the years that I would hate to loose! If anyone needs to get ahold of us this week, please call, as we are not sure when we will be up and running again at home.

Hope everyone is doing well and all of the kids are off to a good start this new school year!!! Sydney and Sam are both doing great and enjoying their classes so far!!! We are keeping ourselves busy with the start of Harvest, and looking forward to a new experience in October!!! Sydney, Sam, and cousin's Sarah and Kate will be showing young beef animals at the Minnesota Beef Expo at the State Fair Grounds. This is the first time they have entered this show. It will give them all more experience showing in a different setting, and help them prepare for next years 4H projects!!!

Thanks for stopping by!!! We love keeping in touch with you all!!!

Love & Peace
Kelly
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It's back to school time already!!!

I seem to always embarass my kids each first day of school, as I try to capture them in photo, while making that journey to the bus! This year was no exception, In fact I think I out-did myself :0) Actually by keeping my humor, I believe, it helps to mask the tears that are hiding inside me. In the video, Sydney and Sam are trying to get on the bus as fast as they can, to avoid a picture, or in this case, a video :0) A little unexpected moment occurs when Cara comes foward to wave and say "Bye" :0) It was so unexpected, and precious, and sooo made my day!!! :0)









Wishes to everyone for a Great first back to school week!!! May all the teachers know how much we need and appreciate their love and patience they show for all their students!!! God Bless all those that work with our children each and every day!!!!

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Hello to all our Dear Family and Friends!!! The kids had a Fantastic couple of weeks at both the County Fair and then the State Fair!!! Lots of precious memories are centered around the fair, and new memories were made by all of us!!! We enjoyed watching the kids with their projects, and were thrilled, along with them, that they did so very well!!! Congratulations to all the 4H'ers this 2007 fair year!! The animals are loaded up on the semi as I am typing, and the kids are getting ready to make their trip back home on the bus together!!! I am sure they are tired but excited to share thier stories that made this year so special!!! Both Kate and Sydney did an Awesome job at the State Fair, both in the beef show, and the showmanship competition!! Kate won a trip for her Prize winning potatos, and Sarah has her Blue ribbon tomato juice still at the Fair, which will be judged next week!! Here is a picture/video remix I have been working on, and think you will like!!! I did not get to go to the State Fair myself to see the kids, but Tom did, and he got home with a few pictures Friday night that I was able to add to the mix!! Here it is!!!! ENJOY!!!!



Thanks for checking in as you Always do so Faithfully!!!

Until Next Time.....

Love & Peace

Kelly


Saturday, August 18, 2007 10:20 PM CDT

Good Evening this Saturday!!!

The County Fair is through for another year!!! As we ponder memories from past years, and gather plans to better the future's projects, the kids will prepare for the State Fair coming up next week!!! Cousin Kate won Champion Beef Steer, and a State Fair Trip!!! Sydney took Reserve Champion with her Cow and Calf pair, and also won a State Fair Trip!!! Congratultions to all of the kids for their hard work and accomplishments this entire year of 4H!!!!! I will try to get some pictures posted very soon!!!

The above picture of Carl (From the summer of 2003) showing off his Farm Boy Tattoo, was worn on our T-Shirts at the fair on Show Day!! I designed a little shirt for Cara to wear, and before I was done, I ended up making a bunch for all the kids and most of the family too!! It was fun to see his sweet face on the shirts of family, that wore them in his memory!!! I do so appreciate how much they truly love and miss Carl too. He Loved all of his Aunties and Uncles, and Cousins so much, I am sure he is delighted how much we try to keep his spirit alive with us!!!

Today is August 18th, one of the days in our "Memory Bank" of dates that goes down as changing our lives forever. This was the day 5 years ago, that we received the un-thinkable news that Carl had cancer. Neuroblastoma to be exact...Neuro....what???? Instead of celebrating 5 years of survival, and now better odds of a complete cure, it is just a reminder of the odds that were presented to us that day in the hospital....(30 percent chance of five year, event free survival) which means 30 out of 100 children diagnosed with Neuroblastoma will survive 5 years without a relapse or other complication (but could still go on to relapse many years later). The other 70 will die, or if lucky enough to reach remission, will likely relapse and eventually loose the battle too. Not a pretty diagnosis. This is one of those post tramatic stress times when the flash backs return. Even though Carl is gone, those horrific memories are not. After checing emails tonight, we learned that a little boy Carter that we have come to know from posts on the NB list serve, and support from his Mom, has died today. How very sad this time surly is for this wonderful family. Our hearts go out to them and we will be remembering them in our Prayers for comfort, and healing. We also pray for all of the little children battlig this deadly disease, and for all of the families that are missing their Angels so much.

Thanks everyone for checking Carl's site and staying in touch with us throughout all of these years!!!!! It is hard to believe that Carl's website is 5 years old. We can remember how Awesome it was to journal and communicate what was going on with Carl throughout all of the ups and downs over these years. All of the Joys and Happy times, with each glimmer of Hope our hearts felt. And all of the pain and sadness we experienced... you also felt, as you followed Carl's journey. We will always appreciate the Love and Support you gave, whenever we needed it the most! It had been our life link, which without I am not sure how we would have survived all that we did. I also have felt that maybe it has helped others, through our faith and trust in God, to live life to the fullest, knowing that we are all in this together, and we all need eachother!!! GOD BLESS you all for Loving Carl and our family so much!!!

Love & Peace
Kelly


Monday, August 13, 2007 9:28 PM CDT


"Tuesday August 17, 2004"

Good Morning to all!!!

We are enjoying the fair, but more sitting back watching the boys with their calves :0) They are so proud of their little projects, and have been busy to keep them cared for!! They noticed how everyone would stop at thier little calves and ooooo and ahhhhh over how cute they are, so they began to ask every child that stopped if they wanted to go in and pet their cow :0) Soon Carl began to venture further out of the barn to snag wood be walkers by, to come in and pet his cow :0) It was very precious, we sat and smiled, and laughed so much at these boys!!!

We have been keeping a close watch on Carl the past couple of days. He started to run a temp on Monday, and has visited the Redwood Hospital for line cultures, and antibiotics twice to cover a possible line infection. We have not heard an official report after 24 hours, so I guess then this should mean no news is good news?? He wanted to be here so badly at the fair, so we are so Happy that Carl got his chance, and that Sam was able to have his little partner with him!!!

Bryan is at camp Jornada this week, and I have not heard anything from him so far. I know he is having a blast, because they have a week of fun activities planned for all of the campers!!! I think later today was the biggest event of all week ~ The Jello War!!!!! I can't wait to hear all about his adventure at camp, and see the pictures of all the kids!!! They should be having nice weather this week, it did rain earlier on, but it has been just Beautiful ever since!!!

Sydney has already left with Tom to get to the fair. Today they must wash and get ready her chickens and her heifer for the shows!! Sam will be showing Spot, but he really needed to sleep in a little this morning since they were working so hard yesterday, and were so tuckered out last night :0) Sydney's Grandma and Grandpa Bladon, Doyle and Helen are here to watch Syd show her animals, and Jeff arrived last night too. I was in the restroom yesterday, and turned around after washing my hands and Helen was standing there!!! I said "HELEN" and she said "KELLY" and we hugged!!!! She didn't expect to see me at the fair, she knew Carl had some tests to do in Rochester this week, but didn't know we got it all done on Monday, and could come home for a couple of days!!! It was so good to see them again!!! They are all excited to see Sydney show her animals today, and Sydney is so Lucky to have so many family members there supporting her!!!! We also have Auntie Jill and Nickey coming this morning, Aunties Janet, Joy and Sheila will all be there today too!!!! Thanks to all of you for taking time off of work, and making this a special fair week for the kids!!!!! Sydney will be bringing her friend Heather to the fair with her tomorrow, she is looking foward to a day of fun, after her showing is all done!!!

Thank you for stopping by, and for all of your Prayers that are making a difference in our lives!!!

GOD'S GIFT OF TRUTH WHEN YOU NEED SOME COMFORT AND JOY

* It's impossible to be always happy, but it really is possible to be continually joyful.

* Little joys can carry you through when you can't get your mind or body around big ones.

* You can be joyful even when you don't feel joyful. You can accept comfort even when you don't feel comfortable.

* When you don't feel comfort, look for strength. When you don't feel strong, give the Lord your weakness.

* Joy comes from understanding what has been promised, trusting in God's care, practicing thanksgiving-and appreciating life.

* God will give you the comfort and joy you need, in the proper dosages, to bring you where you need to be.

* Joy is that deep-down knowledge that all is well, regardless, and all shall be well, no matter what.

Emilie Barnes-

Love & Prayers

Kelly & Tom
& Family
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Monday August 13, 2007
I did something tonight that I havn't done for a very long time....In fact I really can't remember if or when, I have yet to...take a look back

The reality is still so painful, to remembr is so sweet, but so very difficult.

We are approaching one of Carl's favorite times, and one of our very best memories of how Happy he was. In the midst of the most crucial time for Carl, and our reality of the imminent, Carl enjoyed a couple days with his whole heart, and our hearts were so warmed, as we watched his Joy!

We can hardly believe this is the third year of returning to the County Fair, without Carl with us. We often reminise of that last speical year, and it can bring tears of both joy and pain. To remember is proof that he was "here" To remember, recalls the pain of reality. Just when we think we are "ok" (whatever that is) our loss of Carl feels so fresh and raw. We miss him more every day, and it is "ok" to let ourselves admit that!!

I look at Carl's precious little sister, and think how very proud he must be of her!! And how much I wish he were here with us to enjoy her, and Ohh how he would have Loved playing with her!! She started wearing a little pair of hand me down tennis shoes (from a sweet little girl Anna) we brought out, they are "Dora shoes" She points to the Dora picture on the side and says "Dora" :0) I can't help but think of Carl, and how he Loved the Dora show!! :0) Perhaps a little gift from Carl to make me smile :0)

The kids will be entering their animals at the County Fair tomorrow, and Thursday will be the big show day for Beef!! They have been working extra hard every day for the past couple of weeks, so finally the time is here to show their stuff!!! Both Sydney and Sam will be bringing Doves, and Sam is entering a wooden tomato stand/thingy that he made!! We are looking forward to watching them show their projects, and enjoying what they work so hard for all year in 4H!!!

Thanks to Jenny and Jessie again this year for all of your help and guidance you have given the kids with their animals!!! You are an inspiration and roll models to these kids, as they are already talkig about the day they can too go to UMC to work on their degrees in Animal Science!!!! THANK YOU WE LOVE YOU DEARLY!!!! Also Thanks to cousin Nick for helping this week here on the farm and at the Fair!!!! And Thanks to the Aunties that are coming to offer moral support to the kids once again!!!!

We hope you are all enjoying these last few weeks of your summers before that "Back to school" time hits us sooner than we want!!! Where did this summer go???

Thank you all for STILL checking in on Carl's site, and for caring about our family as you always have!!!

Love & Peace
Kelly


Wednesday, July 25, 2007 10:01 PM CDT

Hello to all our Dear Family and Friends!!!

We hope you are all having a wonderful summer!!! We have been enjoying ours, and keeping very busy as always :0)

This past weekend was no exception!! Friday night was our Annual Relay For Life in Redwood County. Our families 5th year as Carl's Commandos, marking our 3rd year without our little Hero Carl...our main reason to fight for a cure!! It was very emotional to see Carl's name on the lumiaria bags, when he was still with us battling for his life, but now to see that he is "In Memory" is even more painful. It hardly seems real at times, as it often feels like just yesterday, he was right there with us, running around like crazy, grumbling when asked to stop, for a quick picture!! We remember Carl bursting with energy and excitement, dispite the sickness he must have felt, but how he refused to give in to it, as it would have meant being held back from joining his family and finding all of his fun. It is my Prayer that one day, all of this effort from everyone that has given so much of themselves, will provide that desperately needed cure, expecially for all the little innocent children whos lives cancer claims.

Saturday we helped put on a Couples shower for our Niece Jessie and her husband to be Dusty!! We had alot of fun with everyone, and enjoyed a wonderful spread of food that could have fed an army!! Thanks to all the combined efforts of all the family, it was a Great Success!!! We are now looking forward to a Beautiful September wedding, right around the corner!!!

Then Sunday we left for Rochester to take part in the 2007 Cruise for the Ronald McDonald House!!! It was a Great time and it was so good to see everyone again, and many of our Donald House family that we have not seen for awhile!!! Here is a slide show of some of the pictures I took, and some that Stacey sent to me that she captured!!! Thanks Stace for the Awesome photos!!! :0)



We were so glad to have been a part of the Cruise again, and we sure hope to do this again next year. It was truly a wonderful day of great emotion and pride to be helping out the Donald House where we called home for so many months with Carl during his treatment in Roch. We know what it feels like to be a family in need of a place to feel comfortable and secure, while going through such a tramatic roller coaster (fighting cancer in our child) Now we can be on the other side, and help out an important cause, and give back a little love that we have been given!! We will never forget the Love Carl was given, and how much we appreciated having this home to go to when we needed it the most!

We rode with the Erdmann's and Stacey and Kevin from Camp Jornada, and many of their friends!! We were in a group of 20 bikes that rode together for the day. We enjoyed all our time there, and the kids had a great time swimming and hanging out together while we were on the ride. We look forward to getting together again soon!!!

Now that July is almost over, that means the County fair will soon be upon us. The kids are getting geared up to spend many days walking, washing, training their animals for show at the fair. It will be a bustling time here on the farm for a few weeks!! We hope you all enjoy the rest of your summer vacation before school starts again, and get lots of family time together!!! These are the times our kids will remember the most!!!

Love and Peace
Kelly


Wednesday, July 4, 2007 12:02 AM CDT

HAPPY 4TH OF JULY!!!!

Here is a slideshow of some of the pictures taken at our Annual July Hog Roast!!!



It was a Great party once again, and we all enjoyed a Beautiful day of perfect weather!!! The food was Awesome and the Fireworks were BETTER than ever!!!! THANKS to Matt and Tony for your Great efforts to give us all a Entertaining show!!! The display was bigger and higher in the sky than ever, as we found out by spectators on the nearby roads!!! :') We are already looking forward to next years event!!!! Thanks to everyone that came and all the help that goes on behind the scenes that make this happen each year!!!!

My joy is to see all the little children enjoying themselves with the powerwheeels and riding toys!!! All the toys were once enjoyed by Carl too!!

It brings back such precious memories to watch other little guys running around with bursting energy having so much fun!!! Now that Sam has gotten so grown up, he is saddly too big to be riding anymore. All of these toys sit so lonely in the shed most of the year, it is so Joyful to see them come to life once more with other little children enjoying them as much as they once did!!! We know too, that little Cara will soon be one of the little energy bundles that will take off riding with a smile and laughter!!!! Also so Amazingly, when the sky turned dark when the fireworks were about to begin, the moon was FULL and ORANGE in the sky above!!! A little sign that Carl was present with us too!!








Wishes to everyone and their families for a very Happy 4th of July Holiday!!!!

The Ronald McDonald "Cruise" is soon upon us!!!

Here is some information I previously posted about the ride (From the Rochester Ronald McDonald House website), and we encourage any and all that can attend to join us for a Wonderful ride in Beautiful SE MN!!!!


7th Annual "The Cruise" - A Benefit Ride for the Ronald McDonald House

When:
Sunday, July 22, 2007 (Rain or shine)

Registration :
8:30 am - 12:00 Noon
Rochester Community Technical College (RCTC) Sports Complex
Hwy 14 & Cty Rd 22

Cost:
TBD

Contact:
Galen Lohrenz, Event Chair (507) 356-8735


Join us at the House at 6:00 pm for the annual motorcycle parade and check presentation!

Event Raffle tickets are available to purchase for $5.00 each.
Winner will be drawn the day of the event.
1st Prize $1,000 cash
2nd Prize $250 cash
3rd Prize $100 cash
4th Prize $50 cash (3 awarded)

Contact Galen Lohrenz at (507) 356-8735 for more information or for raffle tickets.

The 6th Annual The “Cruise” set a record with 1,015 motorcycle riders gathered on a sunny Sunday morning to ride for the kids of the Ronald McDonald House.

The 135-mile, five-stop ride through southeastern Minnesota is the largest single fundraising event for the House. It took place on July 23, 2006.

The “Cruise” concluded with the annual awe-inspiring ceremonial parade down Second Street SW to the Ronald McDonald House where event organizers presented House guest families with a check for more than $79,000 – an all-time record for this event!

Special thanks to our major sponsors, which include Chateau Theaters, City Looks Salon & Spa, and Sterling State Bank, for their generous support.


We are Excited for the ride this year!!! We did find a bike a couple of weeks ago!!! Here is a pic of Tom and Sydney that night!!! Sydney got the first ride!!!



My sister Holly gave us a special Angel Bell to hang under the bike!!! There is a legend to this practice. It is to protect us from Evil Road Gremlins, and to keep us safe while riding!!!

Here is the legend...

The Legend

Legend has it that a small bell attached to your motorcycle, close to the ground, catches the Evil Road Spirits. The Little Gremlins live on your motorcycle causing all kinds of mechanical problems. The cavity of the bell attracts these Evil Spirits, but the constant ringing drives them insane and they lose their grip and fall to the ground. (Have you ever wondered where pot holes come from?)

We are looking forward to a Great Event and Reunion with our Rochester family and friends!!!!

Some old news and other updates ~

Sydney had a Great trip to China with her Dad and Grandma!!! Will try to add some pics soon. What an experience for her, to treasure for a lifetime!!!

Carl's Angel Wings ~ A Work In Progress!!

The doves have proved to be more of a challenge this spring. After purchasing 50 young birds this late winter, and experiencing the worst failure yet in training this group of birds, we have backed off and once again started a new plan!! The doves we had paired for breeding and the birds we had left from our spring adventure, are now making babies like crazy!!! It is late in the season to be in this stage with young birds, but we now are dealing with stock that are either bred to mates or hatched and raised here on our farm!! The doves that were started homing this spring, that now have mates and young, "should" sucessfully finish training, and home well due to their ties here!! And the young doves to soon begin their training regimend, should also be better homers, since they were hatched here!! We have had many struggles with this project, but continue to stay hopeful, and refuse to give up!!! We know this is a Beautiful Memorial for Carl, and when we achieve what we have set out for, it will all be worth all the frustration getting there!!! Time is what this is proving to take, and as long as we have the determination, it will be done!!! I am Proud to still have one of the birds that was given to us from Scott, (who provided the doves for Carl's memorial service) and now have two babies from Her and a mate from one of our Ill. Homers we purchased in the beginning. It is Exciting to see the progress happening in the loft right now!!!

Keep enjoying your summer, it is going soooo fast!!! Thank you for stopping by to check in on us as you always do, we truly appreciate your Love and Care!!

God Bless you all!!

Kelly


Thursday, June 14, 2007 4:01 PM CDT

It is that time of year again for the Annual Robinson Hog Roast!!!!!

WHEN ~ Saturday June 30th
TIME ~ 4:00PM Until ???
WHERE ~ The Robinson Farm

Just like we have done in the years past, Bring your lawn chairs, a dish to pass, and your appetite for lots of yummy pork sandwiches!!! Lemonade will be provided!! You are welcome to BYOB if you would like any other beverages!!! Come to enjoy a family and friends fun time of good company and food, then plan on staying for the Traditional Awesome Fireworks Display!!!!! We look forward to seeing all of you that can come!!!
If Any questions or anyone needing directions please feel free to email us at tkranch@rconnect.com, or call us at 507-557-2941 or 507-430-2445

**************************************************************



June has become a very emotional month. We have reached the 1 year anniversary, June 16th, when our friend Brent Koch lost his life in Iraq. We are remembering Brent this weekend, and will never forget the Ultimate Sacrifice he made for all of us!! May God Bless his family as they feel their Great loss, and remember Brent this weekend.




June 14
Today we are remembering Carl's sweet buddy Andrew, who flew to Heaven a year ago today, to be with him again. We are thinking of you Deb and Jerry, and Praying for you and your family on this 1st painful anniversary. We can only Imagine what those two have been up to together :0) And the Joy that they both must have felt, when Carl greeted Andrew, and when Andrew entered that Beautiful Eternal paradise! We know they are Happily together, and watching over all of us here Always!!! But Ohhh how we miss them so very much, does it ever get easier?? I do think sometimes, but then there are those little unexpected reminders that pop up out of no where, without warning, that get you right in the gut, and in the heart.

We are planning on joining "The Cruise" The motorcycle ride for the Rochester Ronald McDonald House, coming up at the end of July!!! We will always remember meeting Andrew and Deb at the Donald House, and all of the times Carl could not wait to run and find Andrew as soon as we got in the door! Carl made himself at home in their room, and felt welcome to come blasting in any time he pleased, and he was always greeted with a smile and Im sure a laugh :0)
We will be riding in Memory of Andrew and Carl!!! If anyone would like to join us for the Best ride ever, Please contact us for details!!! Tom and I have been looking (dreaming) of buying a Harley in time for the ride. But have not found the right deal on a used bike, so we will be renting one this year, unless something comes around that we can't pass up!!! Alot of our friends have been getting involved in some of these rides, such as this weekends Relay for Life Fun run!!! It is really alot of fun to get together to ride for a Great cause!!!

Here is some info from the Rochester Ronald McDonald House website ~

7th Annual "The Cruise" - A Benefit Ride for the Ronald McDonald House

When:
Sunday, July 22, 2007 (Rain or shine)

Registration :
8:30 am - 12:00 Noon
Rochester Community Technical College (RCTC) Sports Complex
Hwy 14 & Cty Rd 22

Cost:
TBD

Contact:
Galen Lohrenz, Event Chair (507) 356-8735


Join us at the House at 6:00 pm for the annual motorcycle parade and check presentation!

Event Raffle tickets are available to purchase for $5.00 each.
Winner will be drawn the day of the event.
1st Prize $1,000 cash
2nd Prize $250 cash
3rd Prize $100 cash
4th Prize $50 cash (3 awarded)

Contact Galen Lohrenz at (507) 356-8735 for more information or for raffle tickets.

The 6th Annual The “Cruise” set a record with 1,015 motorcycle riders gathered on a sunny Sunday morning to ride for the kids of the Ronald McDonald House.

The 135-mile, five-stop ride through southeastern Minnesota is the largest single fundraising event for the House. It took place on July 23, 2006.

The “Cruise” concluded with the annual awe-inspiring ceremonial parade down Second Street SW to the Ronald McDonald House where event organizers presented House guest families with a check for more than $79,000 – an all-time record for this event!

Special thanks to our major sponsors, which include Chateau Theaters, City Looks Salon & Spa, and Sterling State Bank, for their generous support.

I will post more info later, when cost is determined. Here is one of my favorite pics from The Cruise 2004...



We know these two are riding the Golden streets of Heaven!!!!!

We have been doing well since baby Cara's scare. She is definitely back to her normal busy self, keeping us all running after her!!! She has a few low grade temps, but all uneventful Thankfully!!! We are not sure the origin, but wonder if her teething could be to blame? Also there has been several kids at daycare that have recently come down with the stomach flu :0( We are keeping our fingers crossed that we miss this bug, and stay well!!! Hopefully everything she is being exposed to, is making her immunities stronger, and she will be able to start fighting off these germs on her own!!! We continue to watch her closely, and have been checking her temp almost daily whenever she feels warm. She is getting used to the routine, but grumbles at being stopped from her busy activities to get a thermomether under her arm (reminds us of Carl).

Sydney is getting ready to leave tomorrow with her Dad and Grandma Helen for a trip to China!!! She is very lucky to get this opportunity!!! We miss her already, and can't wait to hear all about her trip when she gets back home!!! Sam has been busy with his two baseball teams, and swimming!!! Bryan is here with us for a week, and the two boys and I are getting ready to head off to the movie theater to see Shrek The Third!!!! FINALLY!!!!! We have been trying to get to this movie since it came out, but it just has not worked out to go. We tried to arrange a Shrek Party with friends and relatives, but with everyone elses busy schedules, that never happened. We will be thinking of Carl and remembering how much he Loved Shrek, and I'm sure wishing her were there too!!! Actually, I bet he will be sitting right next to us laughing too!!!

Sunday is Fathers Day and we would like to wish all Fathers, Grandfathers, Uncles, God Fathers, Cousins, and any men that have Blessed our childrens lives with Love and Guidance A Happy Fathers Day!!! God Bless you All!!!

HAPPY FATHERS DAY TO ALL, and we wish you all a Safe and Blessed weekend!!!!

Love & Peace
Kelly


Thursday, May 31, 2007 3:21 PM CDT

Good afternoon this Thursday!!!

It is so wonderful to be back home, safe and sound with baby Cara!!! She didn't take long to get back in her routine of walking (quickly) around the house, seeing what she could get in to before being discovered and re-directed :0) It is amazing how children are so resilient, and how they don't seem to miss a beat!!! We always remember how our Angel Carl would never quit, and how he would bounce back after surgeries and procedures that would put us down for a week!! Cara is also catching up on the meals she missed!! She is eating like a starvin marvin!!

This whole experience brought back many memories of the past, things we will never forget with Carl. It just didn't seem real however, and we had to keep wondering if this was truly happening? Things were very different however, as we were sooooo used to our second home of a hospital (St. Mary's Roch) Yes we missed the familiarity, sweet loving nurses we knew, knowing the routein, where to go, what was going on, and everything!!! etc, etc, etc!!!
Cara had great care, and we were taken care of too, but it was very different, and we wondered how it would have felt to be back at Mayo?? It would have probably seemed normal?

Baby Cara, does look alot like Carl! Which makes it hard too, and kind of confusing/crazy?? I know for sure I referred to her as Carl at least twice with staff from Childrens Hosp., but corrected myself embarassingly after getting a stern look from Sydney each time!! But it wasn't my fault totally...She was referred to as "He/Him" more than once by the Hosp staff! Which we had to promply correct as well. It must be her goofy hair doo or something, or the fact that she was in hosp clothing, not pretty pink, lacey clothes :0) Not only does she resemble Carl in looks, but she has many, personality traits that are unmistakably "So Carl"!! Which is kind of curious sometimes. We have filed so many of these little things in the backs of our minds, and she will do something, or act a certain way, and those files come popping right up to the front and a light comes on once again!!! I just think it must be a part of Carl's plan!!! He knew how much we missed him, and this was his little way of bringing himself into our hearts once again on a daily basis!!! I do try to not mention the (Carl looks/behavior) thing as much as possible, but it is very hard, as it is so undoubtably uncanny!! I do want her to have her own identity, and not grow up feeling as though she is being comparred to her brother constantly. She is definitely her own person, and she demonstrates that just as much too!!!

Mostly, I want her to know who her brother Carl was, and how very special he was to all of us, which I think she already is beginning to learn!! She recognizes his pictures, and points him out in group pictures!! She let out a squeal one day when I was going through photo's of Carl for the website!! I even believe she can see him here by us at times, and I have watched her look up, wave, smile, jabber excitedly, to something that we can't see. I have asked her "Do you see Carl?" and "Where is Carl?"
She will put her hand up or point in the air above her, and sometimes open and close her little hand as if to be waving. I do believe he visits us, and she probably knows him better than we realize!!! I hope this continues, and I hope she does communicate with him and always will!!!

We are so Grateful to everyone that has expressed their concern, and Love to Cara and our family, and to everyone that has helped in any way!!! We are Blessed to have you in our lives!!! The ER staff and EMT's and Air Crew were so Amazing in their efforts to quickly take care of our baby under such tramendous stress and urgency!!! We were feeling our helplessness, but we can only imagine their frustration and stress when things were not working, as they were trying so Hard to get her stabilized in Redwood!!! THANK YOU for your devotion and dedication to nothing more important than saving a precious childs life!!
GOD BLESS YOU ALL!!!!!

Thanks everyone for keeping us in your Prayers, as I have always said, The Power of Prayer Works!!!! We appreciate you all checking in on us, and caring so much!!!

We hope to now get back to a normal life (whatever that is, we still don't know?) and enjoy a fun summer!!! Today is the last day of school, and the kids are ready for baseball and swimming!!!

It is almost the weekend again, so to everyone we wish you a Blessed, safe and Happy Weekend!!!!!

P.S. The doves are back at the zoo (two pairs) We hope they will hatch some little babies this season, in their new nest boxes!! Check them out if you get a chance!!





Love & Peace
Kelly


Tuesday, May 29, 2007 10:34 AM CDT

Good moring to all!!

We just got word that Cara is ok to be discharged!!! She is eating well, drinking good, and she looks better each day!! Her labs were normal (nothing growing) Her urine test was normal (NB tumor screening) The EEG was good, the Neurologist said it showed something in the back? which was typical of a seizure, and he expects she will be fully recovered and looking back to normal by tomorrow even. She is quite wobbly, and unsteady. Her neck muscles are weak but much better than yesterday, as she is holding her head up very nicely, but still a little bobbly. She is back to talking and we even got her to say "Chuck" this morning (Her Uncle Chuck) one of the latest names she had learned! Last night the nurses were very nice and changed her IV to her hand, and we think that made her much happier!! So we are waiting for the final orders, and RX to be filled which is suppository valume in case of her going into another febrile seizure in the future, we would be able to administer the medication to help stop it sooner. As far as the fever which caused the seizure?? We don't have an answer, all of her tests came back normal and didn't show anything. Which is good, but still makes us wonder, and will keep us on guard for some time to follow. It is hard not getting a sure answer, but at the same time, we are pleased that she is in as good a shape as she is right now, and able to go back home!!

We hope to be on the road to home in an hour or so!!! We want to Thank all of you for your Prayers, and Loving concern, as you have given!!! We have always been truly Blessed to have such a wonderful support system!!!

We will update again soon from home!!! Until then, Thank you all, and God Bless you all for everything!!!

Love & Peace
Kelly

****************************************************************

Good morning to all our Dear family and friends.

I don't know for sure who is checking Carl's site on a regular basis, but in case those of you who are looking for an update on Baby Cara, I thought I would post what is going on, here on Carl's site.

On Sunday evening May 27th about 7:35pm, Cara began what would be a night of Hell, and brought back many painful memories of some very scarry times we had been through with Carl over the years.

She had been running a fever, her temp was about 102 at about 5:00pm. Tom and the kids went down to Matt & Mandi's to a little Holiday BBQ, and I decided to stay home with Cara, as she didn't seem to be feeling well, and I didn't want to share anything she may be carrying. She had been playing and acting fairly normal, a little whiney and wanting to be held more than usuall. She walked over to the upstairs door, and began yelling "Sissy" a couple of times, which brought me to tears, because we have been working so hard on getting her to say Sissy (what Carl always called Sydney) Sydney would have been in tears for sure had she heard her! Then she came over to me and wanted me to pick her up. I was talking to her, and she was smiling and talking back to me, then I noticed her eyes were not quite right. She started starring and her eyes were wide open pupils fully dialated. I instantly knew she was entering a seizure. I layed her on the floor and immediately called Tom, who must have flew home within 5 minutes. She was looking at us, as if wanting to talk, and she could follow us with her eyes, but unable to talk. She was not flailing around (grand mall seizure) just the starring, then her breathing bacame irregular.

We decided to drive in to the Hosp. and call 911 to meet us in route. I had Cara on my lap in the back seat and kept talking to her to keep her calm and conscious. Her breating kept getting worse, and she began to foam at the mouth, not able to swallow her saliva. Then she started the arm jerking and her eyes would roll back and then look at me again. Her legs were mostly stiff, but her arms were jerking. Whenever Carl would have a febrile seizure, it would be over within 1 or 2 minutes, and it was the all over body type shaking, nothing like what was happening. The ambulance met us near Welch on Bridge street and we transfered her over to the EMT's THANK GOD!!! She immediately got a shot of adivan (SP)? to help bring her out of the seizure. We arrived at the ER, and everyone available (2 ER Docs, 3 nurses, the EMT'S and then the North Air Ambulance when they arrived) were all trying to get an IV started. Many attempts, sometimes two people, one on each side at the same time, trying to get a line in. Then 4 or 5 attempts to start an IV which is actually drilled into her leg bone which is supposed to go into her bone marrow (commonly used in children when unable to access veins) a couple times one would work, but then shut down, and need to be backed out.

The whole time this is going on, her stats are dropping, and she is needing to be intibated (sp?) but cannot without an IV in placed. So the next step, she was bagged. This continued, all the while the IV attempts continued. The decision was made a bit earlier, when her labs came back with 45000 white count, and 250 blood sugar, (later we learned that both can be elevated due to the seizure) to air lift Cara to MPLS Childrens. While all the IV attempts, and bagging is going on, she went into another seizure. She also got a couple more shots of Ativan (her little legs so full of pokes and bandaids now covering drill holes) Tom and I were standing by helpless, sobbing, as we watched what was taking place before our eyes, with utter disbelief!!

The decision was made to move her out without the IV or Intibation and she was transferred to the North Air ambulance, keeping the bagging going in the process. She took off in the air about 10:40ish, and we started home to pick up Syd and Sam and to go home and pack for an inpatient stay, for the first time in 30 months (Since Carl's last hospitalization) We could not believe a 102 fever at 5:00 would turn into this?? We were told by the air crew that they would call us in about 35 minutes to let us know that she safely arrived. So we picked the kids up from Morton, talked to a few family members that were there, and took off for home to pack. We bagan throwing what clothes we could quickly find in bags, and what was already a night mare, got worse!!!! The power went out!!! UGGGHHHH!!!! Now I stood in Sam and Carl's room, now Sam and Cara's room, looking up at the ceiling, with bright glowing stars that the boys pasted on the ceiling about 4 years ago. The stars were the only thing that gave off any light in the whole house, or yard outside. There must have been a major power outage around the whole area, because the neighbors lights were all off too. Tom was able to find a flashlight with working batteries in it!!! We finished packing by flashlight beam and took off for Minneapolis!! On the way we keep looking at the clock and wondering when the cell phone would ring, starting to get quite nervous!! After an hour passed, I decided to call the ER at Mpls Childrens. I was so scared, I could hardly get my words out. Both Tom and I were thinking the same thing (she didn't make it, and they don't want to call us!!!) As soon as I heard the ER nurse say, "We have her here, and she is doing well" It took the hugest load off of our minds. I am sure my heart was racing faster than Tom was driving (we were told not to speed...Ya right!!) I talked to two Doctors on the way, and two or three nurses as we drove, to give them the background of what was going on. They already got an IV placed, intebated her (she was doing good) drew labs to send off for CBC and culture, did a head ct, (does any of this sound familiar???) they also did a spinal tap to check for meningitis. OH LORD HELP US!!!!

We arrived at Abbott NW/MPLS Childrens, and drove around the block a few times, trying to find the Childrnes ER entrance. We finally found the right place to park and found our way in to the Hosp. We went right to the PICU and saw our little dolly, sleeping peacefully, hooked up to monitors, and respirator. She looked so pale, and briused up from all the pokes. Poor baby. Sydney could not go in and look at her, she stood in the hall crying, I knew that she was thinking of Carl and rememberiing...
painfully remembering too much.

We had family right on our tails, (We have always be so Blessed by a supportive loving family) Joy and Clair left immidiately after we did (they just came home to Morton for the weekend, and now were heading back home to Mpls) to help us!!! THANK YOU SO MUCH YOU GUYS!!!! Joy and Clair arrived, and were able to see baby Cara for a few minutes. They brought Syd and Sam back home with them, so they could get a good nights sleep!!! We visited with the PICU nurse for awhile, gave him history, and then were put up in a wonderful sleeping room (beds all made up fresh) for the night. Well for about three hours, then we were back up and in to check on the baby.

She had a good night, and her white count had come down to 29000 I can't remember how you read these counts (some things you do forget) she was still sleeping, but would soon be having the respirator removed. They had been giving her anti seizure meds, but that was discontinued in the morning too. Her breating tube was removed. She also had a foley placed when she was admitted. I spoke to the Doctor and each nurse that cared for Cara, about our fears which any parent that lost a child from Neuroblastoma would be having. Without asking,the Doctor ordered a urine sample to be collected, to have tested for VMA/HVMA can't remember if this is right either?? but to check for NB tumor markers in her urine) Keeping in mind that the chances of her having NB are very slim to none, but the Doctor wanted to put this out of our minds and behind us, so we would not worry about it!!

It is pretty pathetic, when a parent worries themselves sick over a child having a fever, or abnormal blood counts, and the first thing they think of is cancer.. But that is the reality of cancer, and what it does when it touches your lives, nothing is ever the same. Nothing is normal, and anything is possible. Even if only a small chance, it worries you. Cara had high fevers a couple of weeks ago, even up to 105 (never seized then)(On antibiotic, labs were normal) I was actually thinking she would not be blessed with the hereditary febrile seizure gene that Tom and Carl shared, but I guess now, that I am wrong, and she will have this possibility whenever she has a fever. This febrile seizure thing is something a child can have occur, and typically have 5 or 6? then outgrow by the time they are around 5 years old or so. I will be a nervous wreck of a mother, when it comes to fevers once again.

We got news back on some of the tests, the head ct was good, the spinal tap was clear, and her white count is back to normal (she had been on two antibiotics around the clock) She also had a EEG to look at brain activity, this morning, and we will soon have the results for that. I took a couple of pics of her with all the little wires on her head as she slept, she looked like she had rag curlers in her hair :0) I will try to post some pics soon, the family resourse center here will help he get some pics added with an attachment to use my card in!!!

We are still waiting for other tests and cultures, to determine what was causing the fever (what type of infection or illness) but have not heard anything yet. We are waiting to be moved out of the PICU to a regular floor room, and will be doing that soon!!! Cara has awakened, from all the sedation and drugs, but is still recovering from such a tramatic exhausting experience. She is not qutie her normal self, but it will take time as the meds clear out of her system and she rests, and gets her little body working again. She is up for short periods, but is so cranky, and restless, she doesn't seem to know what she wants?? Also she has her IV line in her foot, which makes everything even more difficult. She wants to stand up and keeps trying to step on her foot :( I am hoping they will move it to a hand, to free up her foot. Once we get to a floor room, we can pull her around in a wagon, and take her out for walks to see other things!!

I had better get going for now, and check in on her and Tom, to see if they are ready to move. I will try to update again soon!!! Keep us in your Prayers, Please pray specifically that she does not have any brain dammage from the seizures (the first one lasted about 35 minutes)

Thanks for checking in on us everyone!!!

I just added this slideshow of a few pics we have taken. Someone let me know if this is working?? The computer at the Hosp. does not let it run, but it looks like it is added ok?



Love and Peace
Kelly


Sunday, May 27, 2007 10:28 AM CDT

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Wishes to everyone for a Happy and Safe Memorial Day Weekend!!!!

Carl has lots of pretty flowers of every color to brighten his grave. Sam even found a candy corn vine, that looks like it has real cand corn growing on it!! We planted a few Asparagus plants to set out there, as Carl always love to go looking for Asparagus with Sam and his Daddy :0)

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We are heading off up north to do a little fishing!!! We are so Happy it has turned out to be a Beautiful weekend for being outdoors!!!

Love to everyone

Kelly


Wednesday, May 9, 2007 7:13 PM CDT

It is that time of year again to wish all Mothers, Grandmothers, God Mothers, Aunties, Nieces, Cousins, Teachers, Day Care Providers and everyone that has touched the lives of our children, and children everywhere........ A Very Happy Mothers Day!!!!!

We have been truly Blessed by all of the Care and Out pouring of Love that our children have received by all the special people in their lives. As it has been said, "It takes a village to raise a child".... So very True!!!

We will be celebrating Mothers Day here at the farm and enjoying time with relatives that can be here with us!! We also will celebrate our little sweetie, Cara Joy's 1st Birthday this day! Her Birthday is May 15th!! Last year we went into the hospital on Mothers Day, and she was born just after midnight! Carl knew what he was doing when he sent us our little Blessing in May, near Mothers Day, when all of the Mommy Flowers are in full bloom!!!

Thank You Megan for this BEAUTIFUL poem!!!

Dandelions From Heaven
Mothers Day is coming...and I wanted to send you a sign...
Something you can tell others..."Is from an angel of mine".
So I searched the Heavens high and low for that perfect thing..
And low and behold I found it....and a smile I hope it will bring.

So when you look to the Heavens...and see the yellow stars in the sky...
Just think of me...your angel... in the Heavens way up high...
And just imagine those stars...are dandelions up above...
Yes! Dandelions are also in Heaven...,which you know how much I love.

So on this Mothers Day... when you awake and feel blue...
You will notice those yellow stars...are no longer in view...
So just look to the meadows and the dandelions you see....
Are the ones I've tossed down this Mothers Day from me!

And when you find a dandelion that has turned from yellow to white...
You're supposed to make a wish...and then blow with all your might.
For you will be blowing kisses... to me in Heaven above....
And I will be catching them and blowing them back...sent with all my love.

Please know that I am with you...on this Mothers Day...
And also in the days ahead...God and I will never stray...
We will be with you in the morning...when you wake and see the sun..
We will be with you when you say your prayers...when the day is done.

For God and I will never be...very far from your side...
For I can now be everywhere.. .and God will be your guide...
So...remember when you see dandelions.. .its your guarantee...
That I am alway close to you....
For dandelions are free to roam.....now just like me.


With Love and Smiles from Heaven, Carl has decorated yards and valleys everywhere with those little yellow flowers!!! I don't think I have ever seen so many dandelions EVERYWHERE!!!

Thank you all for stopping by to visit, and for your messages, and emails!!! We love to hear from you!!!

May your Mothers Day weekend, be full of Love and Happiness!!! God Bless

Love & Peace
Kelly


Thursday, April 19, 2007 8:40 PM CDT

Happy Fifteenth Birthday to cousin Sarah "Rah Rah" today April 26th!!! We heard you were getting your drivers permit?? ;0) I guess we better be watching out!!! "Smile" just kidding!!!

This above photo is great memory!!! Cousin Nick was here to help the kids wish Sarah a Happy Birthday!!! We were in NYC in April of 2004. Here's some great pictures from our last trip there.



Will update again soon!!!

Love & Peace
Kelly
************************************************************


Good Evening this Thursday!!!

Another busy week here with the kids and activities :0) Sam will be a contestant in the Morton, "King and Queen of the Garden" pageant, trying to win King for his age group!!! He has been practicing his magic trick and getting ready for tomorrow nights competition :0) The contestants will be announced, go up on stage, have a little bit read about them, and do a talent of their choice. They will be judged in appearance, poise, personality and talent. The winners will ride on the fire truck in the Morton parade on Saturday morning!!! Then the winning contestants will represent Morton in all of the upcoming festivals throughout the year! OH MY!!! ;0)

Tuesday night was so much fun!!! Sheila and I met Amy (my co-worker who also won tickets) and her friend Kathy, at the Blue Heron on the Green in Willmar for the psychic event!! It started out with hordurves and beverages before the ladies and radio station crew arrived. We enjoyed good company and lots of laughs. We were enjoying some chips and salsa, and of course I had to get salsa on the white linen table cloth. So when Kathy got up to go get more food, we turned the table around so that my spot on the table was in front of her :0) She came back and looked down, and said, "Oh look, I dribbled too!" We tried so hard to keep a straight face, and not laugh, but she looked at us and right away figured it out!! It was too funny!!!

The psychics arrived and started right in explaining what they did and how everything worked. They wanted to try to do as many readings as they could!! They started going around the room and covered each table one by one. It was amazing how they seemed to be hitting on "correct" information with about everyone!!! They came to our table and began their work. Amy and Kathy were first, and they mostly gave them advice type information. The daughter psychic could see "AVON" for Kathy. And that was right on, as she was a regular AVON customer, and had just met with her AVON representative the night before!!

Sheila was next, and they could see "6" spirits around her. We are not really sure of all the information, things were kind of sketchy, but we thought it may have been Grandpa George possibly, and we wondered if the 6 were he and his 5 siblings, since there were six children in his family? There were other things read that we were not quite sure of? The daughter asked if she had a son, and also asked if Sheila lost a child? It was unclear but I wondered if somehow Carl was being sensed there? We were left with ideas and questions, and as the psychics say, you must do your homework. Many times, things don't make sense at the time, but later they will become clear, and then you will realize what they meant?

When they turned to me, I had a couple of female spirits around me. She described the shape and height of them. She described a feeling of how one (we believed to be Grandma Phyllis) had something to do with breathing and difficulty talking at the end. She said that "she had wanted to talk to us (reply to us), as we had been talking to her at the end, (before she passed) but her breathing was so hard, and talking was so difficult" This would have been true for Grandma Phyllis, as this was very true to what was happening, so we do believe this was her coming through. Another woman described was unclear to me? I wondered if it was my Aunt Marge (My Dads oldest sister) she described her body shape, and hair, which was just how I remembered her! Then the ladies were getting ready to go to another table, and the daughter was still standing there meditating. She said something about a garden.....She said you have little yellow flowers...daisy's......DANDELIONS!!! She said "Your going to have a bumper crop of dandelions!!!"

I looked at Sheila and she had tears in her eyes, and I too got choked up just then. All I could think of was Carl sending that message through!!! If he wasn't there, then it must have been Grandma Phyllis delivering it to me from him!!! Which also reinforces the validation that Grandma was one of the women around me!! Something I will share with you about this dandelion reading, is that on Monday, I was talking to Carl about Sheila and I going to this event, and I talked about various signs between him and I. One of those things being my love for dandelions (Mommy Flowers), and how soon they would be popping out everywhere!! I told him how much I loved it when he and Sam would go out picking the biggest bunch of dandelions for me, and bring them in the house with big smiles on their faces!!! Hearing her mention dandelions, validated that Carl did hear me talk to him, and he was letting me know that!!!

It was a good experience, and I left feeling peaceful and so hopeful. Our loved ones are around us, and their love for us does not end!! We miss them terribly, but it helps to know that they are with us, and can still connect with us, just on another level. I am so Excited to see those first dandelions pop up through the grass!!! I noticed the grass is getting very green, it won't be long!!! This psychic had no clue what dandelions meant for me :0) she said something like...your really gonna have to get out the weed killer!!! We just sat there smiling with tears running down our cheeks, and she had no clue what significance those weeds have :0)

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There was a drawing for a book written by Susan Anderson, about her journey and becoming a psychic. It was funny, they passed out a little card for everyone to write their name one for the drawing. I folded my card in half, and then noticed that I was the only one that did that at our table, so I folded the other three in half to match mine. Then Tim the DJ, collected everyone card. He then looked at the cards, and said "Someone folded their card in half so I guess I will have to fold everyones in half ;0) We all laughed!! And as luck would have it, my name was drawn for the book!!! I told him "I'm glad I folded my card!" :0) After the readings, I had my book signed by both the mother and daughter Susan and Christine Anderson. They both wrote a little something. Christine said she could see/hear something about "Let the Sun shine" we are not sure what that means, but we wondered if it refered to a song that Grandma Phyllis used to sing?? like "Let the sun shine in.." or "You are my sunshine" ??? could be!!!!

If anyone is interested, the mother and daughter team called "Bridging two worlds" have a website. They do radio appearances, teach classes, and do private readings. They are at www.bridgingtwoworlds.net Susan is from Plainview MN. I wonder if our friends Megan and Sara G. have heard of them???

Thanks for checking in, and keeping us in your hearts as you always do!!

***********************************************************

To a Dandelion.

Blessings on thy sunny face,
In my heart thou hast a place,
Humble Dandelion!
Forms more lovely are around thee,
Purple violets surround thee,--
But I know thy honest heart
Never felt a moment's smart
At another's good or beauty,--
Ever at thy post of duty,
Smiling on the great and small,
Rich and poor, and wishing all
Health, and happiness, and pleasure,
Oh, thou art a golden treasure!

I remember years ago,
How I longed to see thee blow,
Humble Dandelion!
Through the meadows I would wander,
O'er the verdant pastures yonder,
Filling hands and filling lap,
Till the teacher's rap, rap, rap,
Sounding on the window sash
Dreadful as a thunder crash,
Galled me from my world ideal
To a world how sad and real,--
From a laughing sky and brook
To a dull old spelling-book;
Then with treasures hid securely,
To my seat I crept demurely.

Childhood's careless days are o'er,
Happy school days come no more,
Humble Dandelion!
Through a desert I am walking,
Hope eluding, pleasure mocking,
Every earthly fountain dry,
Yet when thou didst meet mine eye,
Something like a beam of gladness
Did illuminate my sadness,
And I hail thee as a friend
Come a holiday to spend
By the couch of pain and anguish.
Where I suffer, moan and languish.

When at length I sink to rest,
And the turf is on my breast,
Humble Dandelion!
Wilt thou when the morning breaketh,
And the balmy spring awaketh,
Bud and blossom at a breath
From the icy arms of death,
Wilt thou smile upon my tomb?
Drawing beauty from the gloom,
Making life less dark and weary,
Making death itself less dreary,
Whispering in a gentle tone
To the mourner sad and lone,
Of a spring-time when the sleeper
Will arise to bless the weeper?


My Father made this beautiful world and gave me a heart to love his
works. Oh, may I love Him better than all created things!


The little plat of ground around our house is a great field of
instruction and amusement to me. How little do I comprehend of all
contained within it! I am glad I was not born in some great city--
where Nature had not been so kind and dear a friend.

Source: "Canadian Wild Flowers," by Helen M. Johnson.

************************************************************

Love & Peace
Kelly


Monday, April 16, 2007 8:55 PM CDT

Is Carl trying to connect with us??


Dear Family and Friends,

Thank you for stopping by, and for staying in touch with our family!!! We are doing well, and keeping very busy this spring so far :0) Sydney has started her JO Volleyball season, and will be having tournaments nearly every weekend for many weeks!! Sam will soon be starting RAYBA baseball, and also will keep us running into the summer!! Bryan is doing great at St Paul College, and visiting us on the farm when he can!!! Baby Cara is walking everywhere, and keeping us all on our toes, since she has learned how to get into everything!!! From the kitchen, to opening doors wherever possible, dipping in the toilet (YUCK!) and fitting into small spaces, and sitting there with a grin waiting for us to discover her!!! I have a hunch; her big brother Carl is coaching her!

On Easter Sunday when we were all sitting around talking, Auntie Janet told us of something Amazing that happened a week and a half earlier. A couple of girls she knows, one who knows of our family, and has met Carl through Auntie Janet, was the messenger, as this all played out!!! These girls went to a psychic medium for a reading, hoping to communicate with their recently crossed over loved one. The psychic was receiving an energy, and started asking them questions to see if they could validate who was coming through to them. Here’s a close recollection of what happened: Psychic..”Did you have a little cousin that crossed over?” Girls…”No” Psychic..”A little boy about this tall…He was very sick?” Girls…”No??” Psychic “ I’m getting that his name starts with a “C” ?” Psychic “He is standing right between you two” The girls started thinking and after some thought, it occurred to the one (who knew of Carl) She said “Oh Carl Robinson!!!” Psychic “Yes” Carl somehow came through to these acquaintances, who where at this reading, trying to connect with someone else! He must have known that his message would find it’s way to our family and maybe give us some Peace and Hope!! Carl apparently didn’t say a lot, but what I was told was that he wanted to say “Hi to everyone” “He Loves us” and “He likes it when we talk about him”

To me, what this all validates, is that Carl is with us, he definitely spends time around us, and he hears us when we talk about him!! And he likes to hear us talking about him :0) He must have received our greetings that we sent to him through Grandma and Grandpa Robinson, as they were passing, Grandma in November, and Grandpa just a month ago, Which was to say Hi to Carl and tell him how much we love him and miss him!!! There are so many things I would like to tell Carl, and so many things I would like to ask him too. But I am so Happy that he somehow made it through, to get this message to us!!! I do believe he has been trying to connect with us, as there have been many other signs that he has sent us in the past little while!! When we are least expecting something, we look at each other, smile, and know that our little Angel is making a connection! We miss him so terribly, but it is comforting to know and believe that he is around us and that his Love still lives on and he is letting us know that!! I also think that I can sense his presence many times, when I know that he is here with us!! I do talk to him quite regularly, but it will certainly feel different now, knowing that he is very much present and listening!!!

This was the best Easter gift we could have received!!! And to my delight, there is more…and I have to wonder, did Carl have something to do with arranging this?? I happened to be one of the 10 lucky Q102 listeners, that called in last Tuesday, and won an invite only ticket for me and a guest, to an event in Willmar on Tuesday night. The mother and daughter team is called “Bridging two worlds” (not the same psychic that Carl came to) They are psychics that work together, and travel around the country doing classes, and readings and such! This happened when this is all fresh in my mind, and the wonder of it all??? I realize that there are many skeptics, that do not believe in this type of phenomenon, or that spirits communicate to us from the other side. I have read many books on the subject of our loved ones on the other side, and it is hard to deny this does happen. I actually talked to the mom from this team over a year ago, on a Q102 call in show, where you could call in and talk to these gals on the phone and they did a sort of mini-reading. There was not much time for many callers so they had to cut each call fairly short. What they picked up on about me was that there was a strong female presence around/with me?? At the time I was hoping to get something relating to Carl, but nothing came through about him. I was asked if my mother or a sister had crossed over? And that answer was “No they are both still here” What I did wonder later, is if they were picking up on baby Cara’s presence?? I was pregnant with her at the time, but I never disclosed that during this phone conversation. So anyway, tomorrow night, I will be a part of this invite only event!!! I was able to invite a guest with, so I asked Auntie Sheila to join me!! She is just as excited, as I am, to be going, and I think it will be a lot of fun!!! Sheila had a twin sister, Sharon, that passed from cancer as a child about Carl’s age, she had “Wilms tumor” a tumor of the kidney. This type of cancer is now very successfully cured. I often wonder if Carl and Sharon have met and know each other on the other side :0 We also have the possibility of connecting with Grandma or Grandpa Robinson, or all of them together??? It may not be our time to hear from our loved ones, but we should still get something out of it from the other guests there. It will be interesting to see what happens!! Maybe everyone could send some thoughts and energy to Carl and Sharon, who knows, perhaps it could help them find their way through tomorrow night, if they know we are going there, and that we hope to connect with them!!! ) We both are going to this event without expectations, as we know that you don’t always hear from whom you want to…as we found out with our friends that came out of their reading with a message for us from Carl!!! I will let you know how our evening turns out!!!

Wishes to you all for a wonderful week!!! God Bless

Love & Peace
Kelly


Sunday, April 8, 2007 8:46 PM CDT

HAPPY EASTER to all our Dear Family and Friends!!!!!

We have had a very nice Easter Sunday with many of our family that could be here today!! We enjoyed a wonderful Ham dinner, complete with mashed potatoes and Ham gravy!!! Everyone brought something delicious to share, and we all over indulged as we usually do!!

After dinner we made a trip to Carl's cemetery to light his remembrance candle, and send three orange balloons up to him in Heaven!! Then we visited Grandma and Grandpa's cemetery to light their candle and send up some red and blue balloons for them!! We also remembered Uncle Daves's father with a couple of yellow balloons. His father had passed away a few days ago, which brought Uncle Dave and Auntie Jean to Minnesota this weekend, for the funeral this coming week. We were so Happy to have them here with us for Easter dinner, but so sorry for their dear loss. Uncle Dave and his family are in our thoughts and prayers at this very difficult time.

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Gathered together to remember Carl and send him some orange balloons for Easter!!

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Remembering Grandpa and Grandma Robinson, and Uncle Daves father, Roman, sending some balloons to Heaven!!

On Saturday, we did our traditional Easter Egg coloring with the kids, and Cara for the first time!!!

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Auntie Janet helping Sam and Cara color Easter Eggs!!
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Cousin Jenny doing Eggs too!!

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A good memory of Carl with Grandma Phyllis, a favorite picture of the two of them!!!

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Another fun spring memory!!!

Thank you all for stopping by!!! We hope you had a Blessed Easter Holiday!!!!!

Until next time,

Love & Prayers
Kelly


Tuesday, March 20, 2007 5:53 PM CDT

Hello to all our dear family and friends!!

With great sadness, our family has experienced the loss of Carl's Grandpa George Robinson, on Monday March 12th. Just four months ago, Grandma Phyllis left us for Heaven, and ever since, Grandpa's heart has been broken. We miss Grandpa so much, but we take comfort knowing that Carl is so Happy up there in Heaven with his loving Grandparents. He is showing Grandpa all around the place!!! We joked around that Carl has been keeping Grandma quite busy up there, and she must have needed some help from Grandpa :0)

Here is Grandpa's Obituary ~

George S. Robinson, 88, of Redwood Falls and formerly of Morton died peacefully, surrounded by his loving family, Monday, March 12, 2007 at Seasons Hospice House. Funeral services will be held at 2 p.m. this Friday from Cornerstone Christian Church in Redwood Falls.

Burial, with military honors, will be held in the Morton City Cemetery. Visitation will be held at the church today from 4-8 p.m., with a prayer service at 7:30 p.m. Visitation, with no reviewal, will be held at the church Friday one hour prior to service.

The Nelson-Martin Funeral Service of Redwood Falls is in charge of arrangements.

George Sam Robinson, the son of James and Sarah (Swartz) Robinson, was born Jan. 14, 1919 on the family homestead in New Avon Township, Redwood County.

He grew up in New Avon Township and attended country school through the eighth grade.

Following his education, George worked for area farmers. In 1940, he was inducted into the U.S. Army. George received his basic training in California and then was shipped to the Aleutian Islands where he served with Hq. Btry. 1st Bn., 215 CAC (AA). He was honorably discharged in 1942.

On July 26, 1942, George married Phyllis Wolter at Zion Lutheran Church in Morton and they made their home in Paxton Township, Redwood County where they farmed until retiring in 1970.

They moved to Morton in 1973 and in 2005 moved to Redwood Falls where they resided at Garnette Gardens.

George was a member of Cornerstone Christian Church where he served as a deacon.

He also belonged to the Horticulture Society of Redwood County and the Morton Senior Citizens. George enjoyed gardening and sharing produce from his garden - and he loved his winter onions. He also liked fishing, ice fishing and hunting. George enjoyed his family, grandkids and great-grandkids.

He is survived by his children, Kenneth (Marlys) Robinson of Bird Island, Judy (Tom) Johnson of Superior, Wis., Dennis Robinson of Redwood Falls, Joy Lynn (Clair) Murphy of Minneapolis, Janet (Mark) Welter of Morgan, Jean (Dave) Gores of Chesterfield, Mo., Chuck Robinson of Morton, Jill (Rick) McVenes of Isanti, Tom (Kelly) Robinson of Franklin, and John (Sheila) Robinson of Franklin; 22 grandchildren; and nine great-grandchildren.

He was preceded in death by his wife Phyllis on Nov. 18, 2006; grandsons Vincent and Carl; and great-grandson Kyle.

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Dove Release at the Cemetery

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Sydney and Sam watching the first Dove (representing the spirit of Grandma) fly. The second Dove representing the spirit of Grandpa.

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Grandpa George with baby Cara and Sam this past Halloween 2006

We miss Grandpa and Grandma and Carl so very much. As the family chain here on earth is broken and beginning to loose links, one by one it is forming again on the other side. One day the chain will be linked together again, strong and unbreakable in Heaven's Perfect World!!!!!

This song by Brad Paisley was played at Grandpa's visitation

Brad Paisley lyrics
"Brad Paisley When I Get Where I'm Going lyrics"

(feat. Dolly Parton)

When I get where I'm going
On the far side of the sky
The first thing that I'm gonna do
Is spread my wings and fly


I'm gonna land beside a lion
And run my fingers through his mane
Or I might find out what it's like
To ride a drop of rain

[Chorus]
Yeah when I get where I'm going
There'll be only happy tears
I will shed the sins and struggles
I have carried all these years
And I'll leave my heart wide open
I will love and have no fear
Yeah when I get where I'm going
Don't cry for me down here

I'm gonna walk with my grand daddy
And he'll match me step for step
And I'll tell him how I missed him
Every minute since he left
Then I'll hug his neck

[Repeat chorus]

So much pain and so much darkness
In this world we stumble through
All these questions I can't answer
So much work to do

But when I get where I'm going
And I see my maker's face
I'll stand forever in the light
Of his amazing grace
Yeah when I get where I'm going
There'll be only happy tears
Hallelujah
I will love and have no fear
When I get where I'm going
Yeah when I get where I'm going

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Sam finished his Hockey Season this past weekend with a tournament in Faribault. The boys played Awesome and won all three games!!!

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It was a Great season, and we are already looking forward to next year!!!

Sydney is starting JO Volleyball, and will be kept very busy for a few months with practices and many games!!! She enjoys playing, and is excited to be a part of JO this year!!!

Baby Cara is doing great, she is growing and learning so many things!!! She is learning to take steps, and has learned how to go up stairs (we blame Auntie Joy) :0) I will have to do an update on her page soon!!!

We hope everyone is staying well, and enjoying some warmer weather wherever you may be!!! Thank you all for stopping by, and for your continued Love and Support!!! We are always so Amazed to see how the counter on Carl's site continues growing. We enjoy sharing our lives with you still, and sharing our Precious Carl memories, that help to keep him Alive in our Hearts and Minds!!!

God Bless you all

Love & Peace

Kelly


Friday, February 2, 2007 3:34 PM CST

It is almost Valentines Day!!!! Today is the coldest day of Minnesota winter yet. I am home with baby Cara today, as she has a terrible cold/infection. It has been nice to hold and cuddle her, this precious time goes by so very fast. She is actually feeling quite well, she is busy and active, and very Happy!!! I often think of the days when I was home with the boys, before the full time job started. It was so fun to see them so active and creative as they come up with more ideas than I could imagine :0) I remember their tents they would build all over the house, and their wild wild hunting expeditions (their stuffed animals being the victoms) Sweet Memories :.)

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Sydney, Carl with his favorite bear Puffy, and Sam, cuddled up on the couch.

January 2004 was an exciting time for our family!! We remember the Disney World Vacation we enjoyed!!!

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We could sure use some of the warm weather we had then, here for us now!!! We will always be Grateful to Jackpot Junction Casino for arranging this wonderful gift of our vacation to Disney with Carl!!!

Here is a oldie but goodie photo of our family, by the Beautiful Heart stained glass window of the Rochester Ronald McDonald House. I thought it would be appropriate in Honor of Valentines Day!!!!

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One thing that is for sure, well at least for now....Is that "SHREK" still lives on!!!! We were Thrilled to learn that "SHREK THE THIRD" will hit the theatres May 18th 2007!!! How wonderful that the saga continues :0) Hopefully we will see a few more Shrek movies through the upcoming years, at least until Mike Myers, and Eddie Murphy get sick of doing this. But How could they????? :0)

Heres a link to check it out!!!!

SHREK THE THIRD

We will have to plan another Shrek Party (a crazy group going to the movie together) We will always remember SHREK 2 when Carl gathered all of his Aunties and Uncles and cousins that could go with him!!! It was a Blast!!!

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Wishes to all for a HAPPY VALENTINES DAY!!!!

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HAPPY VALENTINES DAY Sweetheart Carl, we Love you and Miss you and you will always be in our Hearts!!!

Love & Peace
Kelly


Thursday, January 4, 2007 9:01 PM CST

Happy New Year To All!!!!!

We hope you all had a Merry Christmas and a Wonderful New Years Holiday!!!

We enjoyed a very nice Christmas and a fun New Years Eve in Preston, near Rochester with our Camp Jornada friends!!!

Our New Years weekend started with a trip to Preston to stay at the Hotel we stayed at last year with all our friends!!! It was pretty late when we pulled into town, but we still managed to visit for awhile with Stacey & Kev & Shellie & Rod & kids for a bit!!! We would be getting up early to take a bus up to the Williams Arena "The Barn" to take in a Mens Gophers Basketball game against Louisianna!!! The bus ride was a hoot, baby Cara was passed around and entertained us adults the whole trip!!! Shellie even shared her ice cream with our little sweet toothed girl :0) The game was Great, the Gophers won by two points in the last second!!!! We did some hooting and hollaring!!! After the game the kids got to go through a line and meet and get autographs from the whole Gophers team!!! Sam had a pennant signed, and a T-Shirt too!!! Lots of Great pics of this!!! We headed back to the hotel for a pizza supper, and great company!!! The kids swam and enjoyed themselves being together again with each other!! Sunday New Years Eve day we spent at the Bowling alley, where the kids and us adults bowled a few games :0) Boy are we out of practice!!! Then the kids donated a ton of silly string to the troops!!! Silly strig is used by the military to spray into doorways and such to check for wires/possible explosives. Usually the kids use silly string on each other, (Carl trashed his hospital room more than once with silly string) so they sacrificed their fun, and gave it up to the troops!!!

The little guy holding up the two cans in this pic is none other than Carl :0)

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The local news came to cover the story, and Justin (Baldy) was interviewed :0) He did a great job, and we all chuckled at his comment, about the kids and their stilly string wars... "It is just a mess" ;0) A nice supper was served by a volunteer group at Christ Lutheran Church just behind the Hotel. Then at Midnight we let loose with sparklers and some fireworks in the parking lot!!! The kids had a Blast!!! It was an Awesome weekend and we can't wait to get-together with these guys again!!! Thanks Stacey & Kevin for a Fantastic time, we truly appreciate everything you do for our families!!!!

On December 28th we did a balloon release at the cemetery for Carl, and for Daniel Ourada. We released 7 orange balloons for Carl's 7th Birthday!! Carl is 7 in Heaven!!! We released 5 blue balloons for Daniel, as this year marks the 5th year anniversary of his Eternal Life Date. A difficult date to reflect on, both of our families feeling a deep loss on this special date.

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Sarah "Rah Rah", Kate, Sydney, Sam, baby Cara & Auntie Janet (Carl's Godmother) were all there

A couple more pic's to share ~ On our way home from our New Years weekend, we stopped by St. Mary's Hospital Childlife, and put together two green pedal tractors to donate to the kids!!!

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Thank you all for stopping by, and for the wonderful notes and emails remembering Carl on his Birthday!!! It means so much to us that you think of him, and care so much to stop by and share our memories!!! Thank you from the bottom of our hearts!!! We Love You all!!!

I added 104 pics from our New Years weekend!!! It is on shapfish. I am adding a link here to go look at them. I am not sure if it will work to just go into the album, or if you have to enter your email address and then a password? We will give it a try, otherwise check back on Stacey's site "Camp Jornada" and click photos. I am sure all of Stace's pics will be added soon, and I know she took twice as many as I did!!!!

CLICK HERE FOR SNAPFISH ALBUM

Love & Peace
Kelly


Thursday, December 21, 2006 8:48 PM CST

Just added ~ A new video "Do You See What I See" on baby Cara Joy's website!!! She turned 7 months old on December 15th, and also started pulling herself up to standing! If she keeps up at this rate, I think we are in serious trouble!!! To go to Cara's site, just click on the link below!!!

Seasons Greetings to all!!! It is that time of year again when we wish all our dear family and friends a Blessed Christmas Season, and a Wonderous New Year!!!

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Christmas 2001 Carl helping to trim the tree!!
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Carl almost 2 years old

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Two little Angels



Our dear friend Laurie Ourada, wrote this Beautiful article and I would like to share it with you.

A Cloud Of Sadness

Laurie & Terry Ourada's son Daniel, joined our Savior in Heaven 5 years ago December 28th (Carl's Birthday) We have a special connection with the Ourada's and we are so Blessed to have them in our lives today, as we share their pain and grief of the loss of a precious son.

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A Christmas visit from Newton a therapy dog, at St.Mary's Hospital

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Christmas 2002 spent inpatient, Santa visited the kids and was very generous! Carl was NED (no evidence of disease) after surgery to resect his tumor. Our Greatest Christmas Present Ever!!!

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Carl with a favorite gift from Uncle Chuck!!


Christmas is four days away, Oh my Goodness, are we ready??? I guess we will be when it gets here!!! The kids are excited, and can hardly wait for school to be out for their break, and for the snow to fly (will we have a white Christmas?) With the hustle and bustle, and all the preparations, we still reflect and ponder the little boy that left us two years ago to spend Christmas with Jesus. This time of year is filled with oh so many emotions. Just a month ago we reflected on the two year anniversary of Carl's passing, then trying to grasp another Christmas without our little silly, happy, lovable boy. Then comes Carl's Birthday on the 28th... He would be 7 years old this year...ouch another sting....We know that the Lord will give us the strength, and our dear friends that we share our grief with will give us the support, as only they could know just how we feel....We Thank God for the Ourada family, and all the other Angel families that share a common bond, we know, and they know, and together we will reflect, and grieve, and celebrate, and Laugh, and cry, and smile, and remember, and understand just how precious our memories are.

This New Year we will again join with our dear friends from Camp Jornada, Stacey & Kevin, and many of the camp kids and families!!! This will be the fifth year of New Years in Rochester, between Carl's treatments keeping us in Roch, and just returning each year to celebrate Carl's Birthday at a Hotel (Precious Memories) with the whole Robinson clan!!! Stacey has lots of fun surprises for all the kids!!!

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Carl's Birthday Celebration 2003 relaxing in the hot tub!!!

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Sydney, Bryan, Carl & Sam together for a picture in the hot-tub 2003

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two tired boys after a night of swimming and Birthday Party 2003

The picture on the front page (Carl riding a little green tractor down the Hall at St.Mary's) was a common activitiy the Doctors, Nurses and patients were quite used to seeing when Carl was a patient there! We learned that the two little green tractors have been missing from the Child Life Area?? We spoke to Jen in November at a Remembrance Celebration we attended, that Mayo held for families of children that have died. We told Jen that we would like to donate a couple new tractors to replace the two that Carl and Sam so enjoyed riding around on!!! So while we are in Roch we will be delivering the two new tractors to Child Life on third floor sometime that weekend!!! We just know that Carl would want us to do this, and that he will be so proud smiling down on the little children that are riding the halls of St. Mary's just as he did!!! He will probably be the only little kid that gets away with riding by the nurses as fast as he could, slapping them on the hinder on the way by!!!! :0)

This year has been a year of sadness and growth. Our family has grown with the birth of little Cara Joy!!! We don't have four children, we have five!!! Two girls and three boys!!! I have felt so uncomfortable since Carl's passing, addressing "how many children I have" ??? What do you say??? Do you have to explain to people that you lost a child....That one of your children is an Angel in Heaven? I read a couple days ago, a story that Sam wrote in school, back in September~

September 8, 2006

My name is Sam Robinson
I am 8 years old. There are 7
people in my family. I have 9 pets.
My favorite food is pizza. The thing
I like best about me is my personality.
I have 2 brothers, and 2 sisters.
My sister is annoying.
My dogs name is Harley.
My dog is a chocolate lab.

Wow...Sam gets it!!! (he has 2 brothers and 2 sisters)
Yes he does!!!!


This song has touched my heart....


Still Her Little Child

Words and music by Ray Boltz and Steve Millikan

When she laid him in a manger
He was still her little child
In a city filled with strangers
He was still her little child
Though the inn was full
And the night was cold
She held Him close and smiled
When she laid Him in a manger
He was still her little child

When the angels called Him Savior
He was still her little child
When the wise men gave Him treasures
He was still her little child
When the shepherds bowed before Him
A star shone all the while
When the angels called Him Savior
He was still her little child

When He grew in strength and wisdom
He was still her little child
When He spoke the people listened
He was still her little child
When He healed the lame and dying
They would follow Him for miles
And when he grew
In strength and wisdom
He was still her little child

When the people turned against Him
He was still her little child
When they shouted crucify Him
He was still her little child
And when they nailed Him
To a wooden cross
Then we were reconciled
When she held His broken body
He was still her little child
He was still her little child.

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"Carl is still my little child"


This year we experienced the loss of many precious people. Carl's best friend Andrew, Our friend Brent Koch, Christi Thomas and other chidren who were battling cancer. Cousin's (brothers) Stephen & Freddy, Toms Mom Phyllis. And just today we learned of our friend Barb Cornell. We find comfort knowing that our loved ones are sharing Love and Peace together in Heaven with Jesus. They are in the most perfect Beautiful Place ever, and one day we will too will join that Glorious Reunion, where there is no more pain or tears, only Joy and Happiness forever!!!

May God Bless you all this Holy Christmas Season, and May you all find PEACE through the Miracle of the birth of our Lord and Savior JESUS CHRIST

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Thank you all for your continued Love and Support still!!! We are Blessed!!!

Love & Peace
Kelly & Tom
& Family


Saturday, November 25, 2006 2:49 PM CST

The above "Homepage" picture is of Carl with Freddy in April 2004, the last time we visited them at their home during our last trip to MSKCC. Freddy was writing out a speeding ticket to Carl :0) As you can imagine, Carl was racing around up and down the driveway that day on a little bike Patti found for Carl to ride whenever he would visit. Patti even parked her car at the end of the driveway to keep Carl from driving out into the street. Two weeks before Carl left us in November 2004, Freddy and Patty drove to Philly to see Carl when he was there for his MIBG treatment. We will forever be Blessed that they were able to see him and spend a wonderful day with Tom and Carl before his treatment began. They toured around a little bit and even visited the Philladelphia zoo that day. This was the last good day that Carl spent before he became so very sick his final week with us. Such precious memories we will forever cherish!

I have been doing fine, considering we are upon the two year anniversary of Carl leaving us for Heaven. I was watching a CMT Reba McIntyre special, and this song was sung by Trisha Yearwood to Honor 8 people that Reba lost from her musical family. Needless to say, this is where the tears (flood) began.

Artist/Band: Reba McEntire
Lyrics for Song: If I Had Only Known
Lyrics for Album: For My Broken Heart


If I had only known
It was the last walk in the rain
I'd keep you out for hours in the storm
I would hold your hand
Like a life line to my heart
Underneath the thunder we'd be warm
If I had only known
It was our last walk in the rain

If I had only known
I'd never hear your voice again
I'd memorize each thing you ever said
And on those lonely nights
I could think of them once more
Keep your words alive inside my head
If I had only known
I'd never hear your voice again

You were the treasure in my hand
You were the one who always stood beside me
So unaware I foolishly believed
That you would always be there
But then there came a day
And I turned my head and you slipped away

If I had only known
It was my last night by your side
I'd pray a miracle would stop the dawn
And when you'd smile at me
I would look into your eyes
And make sure you know my love
For you goes on and on
If I had only known
If I had only known
The love I would've shown
If I had only known

So very true these words are to my heart. It still is so very painful to recall that last night. I guess it will always be forever. Our little Angel is a busy little Angel this week. He not only received his Sweet Grandma Phyllis a week ago Saturday Nov 18th, but on Wednesday the 22nd, he helped welcome our Dear cousin Freddy from NY. We were so saddened to hear of Freddy being sick, and then that he also left us this week. So much pain and emotions in our hearts this week. The three of them share a common month all four days appart for their Eternal Life Dates. We are certain of one thing, that Carl must be so Elated, welcoming two of his favorite people in the whole world back home with him! There must have been a huge celebration up in Heaven this week, and I am also certain, it must be still going on!!

One of the songs that rings in my head this past week from an Alan Jackson CD "Precious Memories" is "WHEN WE ALL GET TO HEAVEN". a line of the Lyrics are~

When we all get to Heaven, what a day of Rejoicing that will be!

We played this CD for Grandma Phyllis while she was at the Hospital, and then at the Hospice House later. Our family that was gathered around would often sing along with the precious Hymns that were playing for her. The Hymn, "WHAT A FRIEND WE HAVE IN JESUS" One of her all time favorite Hymns, was the one playing while she took her last couple of breaths and left us to join Carl in Heaven.

That party is certainly growing up there, and some sweet day we will too see our precious Loved ones again!! And what a Day of Rejoicing that will certainly be!

Something else I have not yet shared, is that Carl's dear puppy Pika is also in heaven. One terrible October day, I was driving up the driveway, not seeing her running up to greet me, I hit her. A day or two later, and many, many tears later, I was talking to Carl as I was driving around delivering mail. I asked Carl to give me a sign, if Pika was with him. Just moments later, a corn cob flew out of a combine in the field next to me and hit square on the middle of the windshield. Granted, I was near the edge of the field, and the combine was near the edge too, but it was such perfect timing, and I can honestly say I have never been hit by a flying corncob before, so I took this as Carl's definite sign "YES"!!!

We have not yet visited Carl's grave at the cemetery. We will tomorrow, and will bring some Christmas decorations to add for the season. We had Thanksgiving Dinner at John and Sheila's home, and had a wonderful day there with family all together this year! After dinner, some went to the Cemetery to put up Grandma Phyllis' wreath, and they brought the wishbone from the turkey to Carl's grave :0) He always enjoyed saving the wishbone, to make a wish and break with Sam to see who got the bigger half!!

We hope you all had a Wonderful Thanksgiving Holiday, and are enjoying a Beautiful weekend with your family and loves ones wherever you may be!

Thank you for all of your Loving Thoughts and Prayers, please keep the Hauck family in your Prayers as they celebrate the life of a wonderful man Freddy. We will never forget the kindness and Love Freddy and Patti showed Carl and our family on our many visits to their home during treatments at MSKCC in NY. We Love you and will miss you dearly Freddy, until we meet again. We know Carl is "In Heaven" (no pun intended) showing you and Grandma all around that Beautiful Place up there!!!! I am sure you both are as fit as fine tuned fiddles again :0) and following Carl around on 3 wheel peddal bikes (probably larger than his) as he takes you to see all of his favorite places!

God Bless you all

Love & Peace
Kelly


Sunday, November 19, 2006 8:50 AM CST

Funeral arrangements for Carl's Grandma Phyllis Robinson are as follows ~

Phyllis L. (Mrs. George) Robinson, age 85, of Redwood Falls, passed away on Saturday, Nov. 18th, at Season's Home in Redwood Falls.

Funeral services will be Tuesday, November 21 at 11:00 a.m. from Cornerstone Christian Church in Redwood Falls, with burial to follow at Morton City Cemetery. Visitation will be Monday from 4-8 p.m. at the church with a prayer service at 8 p.m. Visitation will continue one hour prior to the services Tuesday at the church.

Arrangements are with the Nelson-Martin Funeral Service in Redwood Falls.





It is with Heavey heart we have lost our precious dear Grandma Phyllis Robinson on Saturday November 18th. Carl is surly rejoicing, as he has gained his Loving Grandma, as she is now with him and the Lord in Heaven.

I have a place in Heaven

Please don't sing sad songs for me.
Forget your grief and fears.
For I am in a perfect place
away from pain and tears.
I'm far away from hunger
and hurt and want and pride.
I have a place in Heaven,
with the master at my side.
My life on earth was very good
as earthliy lives can go.
But paradise is so much more
than anyone can know...
My heart is filled with Happiness
and sweet rejoicing too.
To walk with God is perfect Peace
A Joy for ever new.

Thank you Donna I. for sending this poem to us when Carl became an Angel two years ago November 26th. Grandma left us just eight days before Carl's Eternal life date. In another card received after Carl's passing, a wonderful friend wrote something about how special it is for the Lord to bring our Loved ones home during the Thanksgiving Season We will always remember and celebrate Carl ever more during Thanksgiving, but now our Sweet Grandma Phyllis is also a part of our Thanksgiving memories Forever. Our Loved ones live on in our hearts, and memories, without end, as they were so much a part of our lives. Love will never die.

We know that Grandma is with her family in Heaven now! She had been speaking of her brothers and sisters, and Mother this past week before her passing. She knew she would soon be leaving us, and she desperately wanted to go to be with the Lord. We were so Blessed to have been able to be with her and spend many hours over her last week here with us. We were able to talk, smile and laugh a litte, as Grandma must have wanted to make this as gentle as possible on all of her Loving family. She told of seeing a bright light and her loved ones on the other side. Oh how this gives us hope and peace that we will too one Joyful day, see her again waiting for us with a smile just as she did! I am sure Carl was the little guy in the front, smiling with outstretched arms desperately eager to bring Grandma back home with him! Grandma and I talked a couple of days ago, about the Beauty of Heaven, and how there is no pain or tears there, only Happiness and Beauty. Carl would be there with a big smile on his face, so Happy to see her. She told me that there would be no more pain, that her leg would not hurt anymore. I told her that she would be whole and healed in Heaven! I told her that she would walk in there, No she would run in with Carl! Grandma had been having trouble with her toe, due to her diabetes, and then later an infection spreading to her foot. She had her foot and lower leg amputated almost two weeks ago. She also had congestive heart failure which was steadily getting worse. She knew that her time was through here on earth. And she was so accepting and ready to go home to Heaven. I told Grandma that Carl has been watching over all of us, and that she will have to watch over all of us too. She nodded her head. I told her that we will miss her like crazy, but we will all be together again some day, in Heaven.

I am sure Grandma is so very proud of all of her huge Loving family. She taught all of us so many things, she never turned any of us away for anything. We will carry with us the rest of our lives, all of the memories we hold so deeply in our hearts, of a woman that was everything to all of us. We Love you Mom/Grandma, and we will not be complete until we see you again one Joyful day!

Thank you all for checking in, and please keep all of the Robinson family in your Loving Prayers.

I will post funeral arrangements soon.

Love and Prayers

Kelly


Thursday, October 19, 2006 7:32 PM CDT

Good evening this Thursday!!!

Fall is upon us, and so is the heart of harvest season! It has been a busy few weeks, and not expected to let up for a couple more. This time of year brings back a flood of so many memories, of a precious time when Carl and Sam loved to go farming with their Dad and Uncle Chuck. The boys could not wait to get in a big tractor or combine, and spend time in the fields each harvest. Their favorite part was bringing along a packed lunch to share :0) Sam is his Dad's sidekick this season, and never tires of the hustle and bustle of farming. I still picture the two boys together, with a smile a mile wide as they climbed up into those huge machines :0) I wonder if Sam thinks about those days, and misses his pal as much as I miss watching them together being so Happy.

We are doing well, all of us staying healthy so far since school started. Baby Cara had an ear infection about a month ago, but is now fine and thriving as a growing 5 month old little girl! She is so very precious, and her middle name says it all "Joy" I didn't think I had any more Love to shower on another child, as much as I love all 4 of our children, but our Love for her is as abundant, as she is so Loved by her family, and everyone around her! I can't look at her without remembering how lucky we are to have her, and what a Blessed gift she is to all of us! I keep trying to put my finger on what is so special about her, and what I come up with every time is that she was sent to us from Heaven Above! She has mastered skooting around in a walker at Linda's Pumpkin Patch Daycare, and say's "Ba Ba" when she wants her bottle. She is so Blessed to be in such a Loving daycare, with such Loving children surrounding her that are teaching her so many things! We feel so very Blessed! I am sure Carl is so very pleased, that he touched our lives this way, and made us so Happy.

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Halloween is just around the corner, and then November. It is so hard to believe that it will soon be two years since Carl left us for Heaven. Two years since we touched and held our little guy, two years since we kissed and hugged Carl and told him how much we loved him. We have to believe that he is ever with us, by our sides, and knowing our feelings. A day does not go by without the pain of missing him deeply. And I don't believe we will ever stop wishing we had more time with Carl.

As I drive around daily, delivering mail, listening to the radio, so many songs come on that make me think of Carl, and often bring on the tears. Here is one that I rescently heard and means so much to me.

Artist/Band: Diamond Rio
Lyrics for Song: One More Day
Lyrics for Album: One More Day
(Steven Dale Jones/Bobby Tomberlin)

Last night I had a crazy dream
A wish was granted just for me
It could be for anything
I didn't ask for money
Or a mansion in Malibu
I simply wished, for one more day with you

One more day
One more time
One more sunset, maybe I'd be satisfied
But then again
I know what it would do
Leave me wishing still, for one more day with you

First thing I'd do, is pray for time to crawl
Then I'd unplug the telephone
And keep the TV off
I'd hold you every second
Say a million I love you's
That's what I'd do, with one more day with you

One more day
One more time
One more sunset, maybe I'd be satisfied
But then again
I know what it would do
Leave me wishing still, for one more day with you

Leave me wishing still, for one more day
Leave me wishing still, for one more day

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Thank you all for checking in on us from time to time, we so appreciate all of your Love and Prayers still.

Love & Peace
Kelly



Friday, September 22, 2006 10:03 PM CDT

Hello Dear Family and Friends,

Our hearts are very heavy as we learned the news on Tuesday that the little Princess Warrior Christi Thomas earned her Glorious Angel Wings. We all knew this was soon to be happening, but when I logged on to Christi’s blog that day to learn the news, I couldn’t believe the pain that hit my gut, and the ache that my heart felt. A long courageous battle, fought with Grace and dignity all the way through. Christi like Carl, enjoyed her short life on earth (even through the chemo, treatments, and pain), and lived each day to the fullest. Could they have known their fate, deep inside their hearts, but just didn’t tell us? The world grieves another precious innocent child taken by this demon cancer, Neuroblastoma. We pray that somehow there will be some good from this, and through dedicated research, (possibly from using Christi’s cell line) there will soon be a cure. We feel the Thomas’ pain and we grieve with them as each of Angela and Shayne’s journal blogs expresses so eloquently so much of what we have experienced ourselves and felt, but could never put into words. We have followed Christi’s story for nearly four years. We have shared joy and tears, frustration, and defeat, as we have watched and read the events of Christi’s life through the eyes of her parents in this disgusting world of cancer that also consumed Carl. One thing cancer did not do was take away our love for our children, or the Love they gave to the world.

Tomorrow will be Christi’s Celebration of life. Angela and Shayne have been planning this day for a very long time. About a year ago when Christi was having some progression and things looked very bleak, Angela emailed me to ask about doing a Dove Release “Carl’s Angel Wings” for Christi’s funeral. We would Love nothing more than to be able to honor this small request for such a Dear family. Our birds would not be able to fly home from this distance, but we still wanted to help to make this a reality. I did some searching on the net to locate someone in Ohio that handles Dove Releases, but had no luck in the Tiffin area. If we could not do a Release ourselves, I wanted to find someone that could! I located a man in Lima that is a Pigeon fancier (Tom Barnhart) who raises, and races fancy pigeons. I knew that most pigeon folks, will keep a few whites in their loft, so I decided to try this route. I have heard that most
Serious racers (as a rule) don’t race whites with as much success as their colored birds, but some have raced and won with whites very well. Many claim that whites seem to be a magnet to hawks for some reason over the colored pigeons? Anyway, I emailed to Tom, and explained the situation, and my wish to hire a group of whites to give as a gift to the Thomas family, (if they were available). To our delight, he was agreeable to help make this work for us!! One year later, after more trials and treatment, this little come back girl’s tired body could take no more. I emailed back to Tom to remind him of my request from last fall, and graciously he was still anxious to help us!! Tomorrow at Christi’s graveside service, the family will release four white doves to complete her Beautiful Celebration of life. They will be doing three doves first, which represent the Holy Trinity (The Father, The Son, and the Holy Spirit) then the fourth and final dove will represent Christi’s spirit. My wish is for a Perfectly Beautiful Dove Release to happen in Honor of Christi!

When we do Dove releases, we just can never tell what may happen. With animals, you just have no way of controlling what they may do. We have had many releases where we just turn our head feeling embarrassed at what happens once the birds take flight. We try to hold off on feeding them the day before, so that they don’t poop on anyone :0) We have had a couple of experiences where they decide to go sit in a tree. Never has anyone minded the goof ups that we notice ourselves, we just hope for perfect results. A special thing that happened during the dove release for Carl’s funeral, I didn’t notice myself as I wasn’t paying attention, but was told about it later. We did the four dove release, the Trinity release then the fourth dove was to represent Carl’s spirit. The fourth dove was released, flew up in the air, then dropped back down near the crowd as if to be having a final look and saying goodbye before he departed with the three doves circling in the sky waiting for him. To those that witnessed this happening, they were very touched. We have had quite a variety of outcomes with many of our dove releases, but it seems that Carl has been actively involved in the last couple of releases we have done.

The release we did for our friend Brent Koch’s (Soldier killed by roadside bomb in Iraq) funeral was a good example. There were three doves released. Two were to represent Heavenly Angels coming to meet the third dove, which was to represent Brent’s spirit. When the third dove was released, by Brent’s father, he flew up in the air and over to the top of the school door entrance and sat! He looked around and sat! Tom and I were just mortified. We were so disappointed that this dove did not fly up into the sky to join the other two that were circling waiting for him. After the funeral we went home so bummed out about this release. But then later we learned, that so many people were touched by that third dove (Brent’s spirit dove) it was as if he was not ready to depart yet but wanted to look over the crowd and reflect on what was taking place on his behalf.

Here are a couple reports found later by the Patriot Guard Riders that rode that day for the funeral, to protect Brent and his family:


“The sight of that long line of bikes, dazzling police car lights, shining leather, twinkling chrome, fluttering flags, the vehicles pulled to the sides with flashers on, the people waving and holding flags, and the thunder of all the machines was truly a spectacle. In the absence of protesters (thankfully) at the very least I hope that our presence drives home the level of pride and gratitude that this young man's countrymen feel toward him.

I also will never forget the experience. It was extremely touching and many times the tears welled up as I thought about the outpouring and why we were there. And I also recall that third dove that only flew a few feet to up above the school's entry way, landed, and looked back on us all. I think about every eye watched that dove for a few minutes, perhaps sensing or hoping that it momentarily embodied the soul of Sgt. Koch and allowed him to reflect on what his life and sacrifice meant to so many.

A huge thank you to the ride captains who had this mission nailed down. Everything worked like a Swiss watch and I thank you for the efforts it must have taken to plan and execute so well”

“When the service was complete a military honor guard emerged from the school. Our 200 members of the Patriot Guard Riders had formed a large semi-circle in the parking lot where the hearse was parked. Soon the family, friends and quests came out of the school, followed by the casket bearing Sgt. Brent Koch. All came to attention and either rendered a salute or placed their right hand over their heart as Sgt. Koch was placed in the hearse. The sounds of a bagpipe playing Amazing Grace echoed through the small town, and tears flowed freely. Three white doves were released, the fist two took flight. The third white dove made one circle over the assembled crowd and returned to land on the roof of the school directly above the doors that Sgt. Koch had just passed through. It was as if through the eyes of that dove, Sgt. Koch could see his family and friends all surrounded by a field of red, white, and blue, all there to honor him and say good bye.”

Just last week, “Carl’s Angel Wings” touched many hearts true Carl style!!! Let me explain this one to you! A couple of months ago, a gentleman from Morton passed away, and we did a single spirit dove release at the funeral. His wife passed away a week and half ago, and once again we did a dove release. I was not at the funeral, but Thanks to Joann D. from Nelson Martin Funeral Home, who has her heart so very much in this with us, was there to help with the release. A verse was read to explain about the dove release. The first dove released was to represent the Husband that had passed on before his wife, he would circle above in the sky waiting for his beloved wife as he has come to meet her. The second dove was released, to represent the spirit of the wife. She flew up and sat on top of the tent at the cemetery. If I were at this funeral…This is where I would have been mortified! But let me tell you what happened next…. The dove in the sky circling around, swooped down towards and past his wife, as if to pick her up! (before this, people were shaking the tent trying to get this stubborn dove to fly, but it wouldn't move) She lifted up and joined the husband spirit dove, and together they circled the crowd a few times then departed together over the horizon! How Amazing is that!! When Joann told me about the release, I had tears welling up in my eyes. Just Amazing!!! Joann said that the whole crowd began clapping, and there were many tears flowing. When I think about the time and work involved in training these silly doves, It is something like this that reminds me “This is why we do this.” My reward, is the beauty and memory it leaves in the hearts of families that are struggling to accept and burry their loved one. The other fabulous bonus from this release was that the two doves made it back home, even through two days of windy stormy weather!!! What a wonderful feeling!!!

So it is our wish that Christi’s memorial dove release is special and magical. Dear sweet Carl, our Prayer to you is to help guide the white doves to be released for Christi, that they may fly perfectly Beautiful on this special day. Blessed be Christi’s Memory

Please continue to keep the Thomas family in your Loving Prayers

CHRISTI'S BLOG SPOT


Love & Peace
Kelly


Monday, September 11, 2006 9:02 PM CDT

HAPPY 19TH BIRTHDAY TO BRYAN!!!!!

Bryan is 19 today September 18th. We are so proud of Bryan, he has had many struggles over these 19 years, and he continues to find that life is not easy, and often not fair. We Love you Bryan, and we know that your little Angel brother, is watching over you and protecting you Always.

We Love You!!!!!


RASCAL FLATTS LYRICS

"My Wish"

I hope that the days come easy and the moments pass slow,
And each road leads you where you want to go,
And if you're faced with a choice, and you have to choose,
I hope you choose the one that means the most to you.
And if one door opens to another door closed,
I hope you keep on walkin' till you find the window,
If it's cold outside, show the world the warmth of your smile,

But more than anything, more than anything,
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.

I hope you never look back, but ya never forget,
All the ones who love you, in the place you left,
I hope you always forgive, and you never regret,
And you help somebody every chance you get,
Oh, you find God's grace, in every mistake,
And you always give more than you take.

But more than anything, yeah, and more than anything,
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.

This is my wish
I hope you know somebody loves you
May all your dreams stay big

*************************************************************


Happy Friday to all!!!!

New Home Page photo of Carl with his Good Friend and Fist Cancer Buddy Eric Fischer!!! Eric and Carl met at St. Mary's in August 2002, just days after Carl's diagnosis. The two boys spent many times together while inpatient getting chemo. What a precious picture and memory!!! Carl used to wear hankies when he was getting chemo, and usually a week or two after, so that when he would feel like he was going to puke (smells and everything set him off) he would hold his hankie over his mouth to help him overcome his spell. And if he did puke, he would hold his hankie up to catch it! What a wonderful invention we came up with!!!

Tracy, Eric's Mom added this photo to Eric's photo section of his website today!!! Thanks Tracy for this Beautiful Picture!!!! Eric is 16 today, can you believe it!!!! Eric has come a long way since Fall of 2002, it is just Amazing!!! It is so hard to believe this is the same boy!!! How truly wonderful to have been a part of Eric's journey and to know him as a Survivor!!!! Check out Eric's site to see an Awesome picture on his Home Page!!! HAPPY BIRTHDAY ERIC!!!

ERIC'S PAGE

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Hello this Monday evening!!

We are off to a new school year once again!!!

The kids Love their teachers, and seem to be enjoying school so far!!! We knew Sam would be in his Glory with Mrs Bloedow this year, and he certainly is :0)

The morning of the first day of school, I pondered about what would have been Carl's first day of first grade this year. I pictured what I thought he would maybe look like now at age 6 and 9 months. I wondered how he would want to dress? Would he insist on new Etnie shows like his brother Sam? Or would he be happy with Walmart shoes like he always liked? Would he be wearing an orange shirt? Or maybe want to wear a "Tony Hawk" shirt like Sam? Somehow I think he would want to be just like Sam :0) Speaking of Tony Hawk... :0) Or as I like to jokeingly refer to him as "Tony Hot" ....One day back in Rochester, Sam & Carl, and I think Sydney was along that day :0) We were in the drive up lane for McDonalds. The lady inside on the intercom asked me if we wanted "Tony Hawk" Toys (with the Happy Meals) or Barbie toys. I could not hear her very clearly, and since I am not up on these things, I thought I heard her say "Tony Hot" Toy... So I said "We will take the Tony Hot Toys" :0) Ok... My kids have never let me live that one down!!! Even Carl would tease me about saying Tony Hot, when ever he got the chance!!! So I am sure he would love to wear this new "Tony Hot" line of clothes!!! Just like his brother!!!! As I pictured Carl, I of course, could feel the tears streaming down my face, and that familar ache in my gut, from missing our little guy. I always feel better, when I remember that Carl has his best buddy Andrew right there with him :0) And I assure myself that the two of them are together in the best school ever, in Heaven. They are probably having a ball together, drumming up pranks to pull on their teacher, trying to hold back their smiles and giggles!! Carl may never have had that chance to go to school here on earth, but I am sure he is making up for all his losses, an then some, as he is enjoying his reward in Heaven!!!!!

We think Carl visits us from time to time :0) Just tonight as I was sitting her typing, the baby's diaper wipe container was sitting behind me on the table. The lid popped up for no reason, as it was secured down earlier. Sometimes things will fall off a shelf, or counter for no reason? We just think Carl is letting us know he is visiting us!!

Things have settled down since the County and State fair weeks!!! Just in time for Sydney to take on her next project!!! She has entered a application to win a young Heifer. It is called the Minnesota Youth Beef Experience Program, through the Minnesota Beef Expo. She will find out in October if she was chosen to recieve a Heifer!!! She will have to raise, and show this Heifer at the Minnesota Beef Expo next year, and keep records to report back to the donor monthly about the progress of her Heifer!!! We are Excited for Sydney, and hope she is one of the five applicants chosen for this project!!!

It looks like Fall is definitely upon us as the weather feels cooler and crisper. It feels good to put on a sweatshirt, and not have to run the air conditioner anymore!! Today was kind of gloomy, but so fitting for the anniversary of 911. As I delivered mail today, I reflected on what I was doing 5 years ago on this day. I remembered working that day too, but as a sub in Redwood. I remember driving around all that day, listening to the radio reports of what had happened that morning. I remember picking Sam and Carl up from Jeanies daycare, and seeing the horrible sight on her TV. I remember coming home and watching more reports, over and over again on television. I remembered how I was so grateful that we were all alive, and together that day, and how we all sobbed as we watched more coverage of that Horrific day. The kids were so young and innocent (we thought Carl was healthy at the time) Sam was so fascinated with the airplanes crashing, he could hardly understand. A tragic day for our country, but to me it is a memory of our family, together before our 911 hit our family on August 18, 2002, we felt close, and so Blessed to be alive.

Please continue to keep Precious Christi Thomas in your Powerful Prayers. Christi has been fighting this monster Neuroblastoma for 4 years today, Sept 11, 2002 this day marks her 4 year anniversary of diagnosis. May God Bless Christi and her family, and keep them safe and protected in His Loving arms.

Christi's Blog Spot

Thank you for stopping by and for all of your Prayers!! Be sure to go to Baby Cara's webpage to check out her new three month pictures!!! She is almost 4 months on the 15th, can you believe it?!!! :0)

Love & Peace

Kelly


Monday, August 21, 2006 6:28 PM CDT

Dear family and friends, Urgent Prayers are needed for our sweet Christi Thomas. I know many of you have been following Christi's story ever since we met the Thomas's in NY. Please Pray for Christi now, as she is having pain issues and fighting for her life like never before. May God Bless the Thomas family and wrap his loving arms around them.

CHRISTI'S BLOG SPOT



Hello this Friday evening!!! Be sure to check the newest photos of the kids and the State Fair!!!

Thanks for your notes Jenny & Michelle :0) I think we are all going to have a Fun year of third grade!!! Maybe....lets see....shall we bring some baby pigs again?? we will have to drum up something!!! :0) And I am sure Pika will have to visit too!!! I do agree on the homework Michelle :0) Hint Hint Hint ;0)

More updates to come!!! And hope to get some new pics added to Baby Cara's page soon!!!

Love to All!!!

Kelly

************************************************************



Hello to all our dear family and friends!

We received some very sad news on Sunday. Our Cousin Stephen Hauck from Maryland passed away last Thursday. Stephen had a massive stroke and cerebral hemorrhage. Our Prayers go out to all of the Hauck family. We will be Praying for Strength, and Peace during this difficult time, and in the weeks and months to come. Carl and Tom were lucky to have spent some time with Stephen and his family while they were visiting Freddy & Patti, and Keith and Ann's family during a NYC trip, while Carl was having treatments at MSKCC. Thanks Ann for sending this Beautiful picture!!! It is so good to see a new picture of Carl, and a Surprise to see that he had hair then :0) Such a gift to share this wonderful memory!!! This photo is of Stephen with his daughter Lindsey, and Tom with Carl :0)

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We had a Busy, Exciting week at the Renville County Fair last week!!! The kids all worked hard for many weeks and months getting ready to show their animals, and they did a Wonderful job at the fair!!! We are very proud of Sydney and Sam and cousins Sarah and Kate!!! Sydney won her first Beef State Fair trip (coming up this week!) with her Breeding Heifer!!! CONGRATULATIONS SYDNEY!!!!!

Here are some photos of the kids and their animals!!!

Sam walking "Jean"

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Sam playing with Maverick

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Sam & Maverick and Kate

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Sydney drying her Heifer "Betty"

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Sydney drying her Steer "Teddy"

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Sarah washing her Steer "Ned"

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Sam hanging out with the animals

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Kate washing Maverick

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Sam by his calf "Jean"

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Sam doing chores

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Sydney getting dolled up before show

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Sydney, Kate & Sara ready to show

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Three cute pony tails

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Sarah getting her steer ready for show

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Sam doing his beef interview

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Sam ready for show

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making their way to the show barn

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Sam and Dad waiting to go in to show

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Sydney showing "Betty"

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Sydney wins First in her Heifer class, and Third overall, winning a State Fair Trip with "Betty"

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AT THE STATE FAIR!!!!!

Jessie fixing up Sydney's hair

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Jessie, Kate & Sydney before the show

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Sydney walks "Betty" around the ring
(notice the huge orb above)

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Sydney getting "Betty" set up

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Sydney is Awarded a Red Ribbon with her Breeding Heifer "Betty" She did a Great Job and learned what to work on for next year!!! It rained and poured most of the day at the fair, but Sydney was lucky to get Betty in the show barn before a Huge downpour!!!
CONGRATULATIONS SYDNEY!!!!


After the State Fair, we will be busy getting ready to go back to school!!! We are very HAPPY/EXCITED/BLESSED to know that Sam will be a third grade student of Mrs. Bloedow's Third Grade Class!!!!! I know without a doubt that it will be a Fun year that Sam will Enjoy!!!! Sydney was Blessed to have Mrs Bloedow for third grade, and she will always treasure her special memories of her favorite teacher!!! I am Happy that Sam will be able to look back later, smile, snicker, laugh, and be so glad that he was also Blessed!!! And we know too, that come September 2008, there will be tears and sadness in our hearts, as we know that this would have been Carl's time for third grade. Maybe he will be sitting there anyway, watching, smiling, and stiring up some mischief the way he Loved to do!!! :0)

Thank you all for stopping by, and Always for keeping our family in your Awesome Prayers!!!

Love & Peace

Kelly


Monday, July 31, 2006 9:35 AM CDT

HAPPY 8TH BIRTHDAY SAMMY!!!!!!!!

WOW so hard to believe Sam is "8" years old!!! Sam is our silly, funny, giggly charm, that can make us roll our eyes, and crack a smile (when were trying not to) and belly laugh til it hurts!!! We know that Sam has done Carl very proud, and he smiles with us each day as we watch Sam learn, and grow!!!! (and come up with his ideas) Carl was a good teacher :0)

Sam has had a busy last week, from Hockey Camp in New Ulm, to beginning to get ready for the County Fair right around the corner!!! The kids have been leading, washing, and grooming their steers/heifers every day to get them ready for the upcoming Fair!!! Thanks to cousin Jenny for all of your dedication and help you give the kids!!! We hope they will have the same Love and Appreciation that you do in your heart, when they are all grown up too, and then they can pass on their experience the same way to little cousins Kody & Kaylee & Cara when they are little 4 H'ers!!

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Sambonie at Hockey Camp!!! On Ice Skates in July (100 degrees outside) What a Dream!!!!!

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Sam with his Heifer "Jean" named after Auntie Jean :0) born on June 14th 2005

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Sam washing Jean...one of many times before the County Fair

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Sarah with her Steer "Neddie"

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Kate with her calf "Maverick" what a cutie pie!!! :0)

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Sydney with her Steer "Teddy"

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Sydney's Heifer "Big Black Betty" named after the song that was playing while she was washing her!!! :0)

After a long, Hot week of work, the kids get to cool off and enjoy some swimming at a Hotel getaway Saturday night!!!

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Sarah coming down the water slide!!!

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Here comes Kate!!!!

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Sam is next!!!

Sorry Syd, all of your shots were under the water :(

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Here is Cara the bathing beauty in her little suit and grass skirt!!!

The summer is flying by, funny how that always happens!!! One more week of being home with the kids, then I will be back to work. It will be good to get in a regular routine again, but so sad to have these days come to an end!!!

We did not make the "Cruise" as we had planned to :.( With the Hot weather, and still recovering from our crash, we decided to stay home and not make the trip to Roch. It sounds like our friends had a Wonderful time, and we are so sorry we missed out!! We missed seeing Kala and her Dad this year, it has been so long since we have seen them!! There is always next year to look forward to, and we hope and pray that it will work out to make it for the Cruise 2007!!!

As the summer moves into "County Fair time" our hearts ache a little to remember the fond times we had with Carl as he enjoyed the fair so very much!!! We often remenisce about things he said and did, and how Happy he was to take care of and show off his calf "Spike"

Our hearts will Always Remember!!!

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Thank you for stopping by, and for all of your Love and Support!!! Carl has left us with Memories, and so rich with Loving friends!!!

Love & Peace

Kelly




Friday, July 21, 2006 2:50 PM CDT


HAPPY 64TH WEDDING ANNIVERSARY JULY 26TH TO Grandpa & Grandma Robinson!!!!!

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Hello to our Dear Family and Friends!!!

Thank you all for continually checking in and for keeping us Faithfully in your thoughts and prayers!!

Our Precious Angel Carl, and his speical friend Angel Andrew have a big buddy to look up to now, up there in Heaven :0) Our friend Brent Koch, who was serving in Iraq, was killed by a roadside bomb on June 16th. Our community mourns a wonderful friend who will never be forgotten!!! Please remember Brent's family and Andrew's family as they begin the process of healing and trying to live without these Loving boys. They have touched our lives and we will forever hold them in our hearts!!!

Our guardian Angels are indeed looking out for us, and keeping us safe. They were very busy on July 10th, stopping what could have been a Horrific tragedy.

The kids (Sydney, Sam & Cara) Tom and I set off for a summer vaction heading out West. We drove out to South Dakota, visiting the bad lands, Mount Rushmore, Wall Drug, Reptile Gardens, and Bear Land. We drove through Wyoming through the Mountains of Big Horn National Forrest on to Cody Wyoming. When we got in to Cody, a Rodeo would be starting in a couple of hours!! We were thrilled to catch this on our trip!!! Our next stop would be Yellowstone National Park, then we would turn around and head back home. We were leaving Cody for Yellowstone, about 19 miles out of town on Hwy 14 W. when a van heading East crossed over the center line and hit us. Tom was driving and tried to take the ditch to miss her, but in reality only had about a second to a second and a half to react. The front driver side of the car was struck. We are not sure how this happened (what the other driver was doing?) or why this had to happen to our family? There is a Bible verse that says "consider yourself Blessed to be given trials" or something like that!!! I would have considered us already Blessed for a lifetime!!! But we do feel Blessed to have walked away from this crash, as good as we did!!! Here are a few pictures of our trip.

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We were shook up, cut and bruised, but our family and our Faith still in tact!!! Praise the Lord!!!!

We stayed in Cody two more nights, then flew home leaving our wrecked car behind. We have to commend the wonderful Ambulance and ER crew that cared for our family!!! We all thought of Carl many times that day, and how we are sure he kept us all together, and safe!

Since our trip we are taking it easy, and getting better!!! We have Bryan here with us too, so we are enjoying each other and the final weeks of our summer together!!! This Sunday will be the "Cruise" raising dollars for the Rochester Ronald McDonald House!!! Tom and I were planning on riding, but now just plan on being there at the Donald House to watch the Glorious Parade of Bikes ride in with many of our friends in the line up!!! We look forward to seeing many of our Dear friends and family we have made, at the Cruise!!! Last year during the ceremony at the House, Carl's name was brought up. He was remembered by his bright eyes, and Happy smile and how thrilled he was to sit on a Harley after the Cruise "2004" those memories are near and dear to our hearts!!! We hope and Pray that we will be able to once again join the riders, and be a part of that Homecoming Parade next year, In Carl's and Andrew's memory!!! May God Bless all the riders, and keep them safe from harm during the Cruise on Sunday!!!

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Thank you all for stopping by!!! Hoping you are all enjoying your summers and doing lots of fun things!!! Please remember to keep all our friends battling Cancer and other illness in your Prayers, and Always remember the Angel Parents that miss their children so very much!!!

Love & Peace

Kelly



Tuesday, July 18, 2006 2:42 PM CDT

Good Afternoon this Tuesday!!!

We hope you are all enjoing your summer!!! We are in the process of a new update, so please check back soon!!!

Love & Peace
Kelly


Friday, June 16, 2006 10:07 AM CDT

Good Evening this Wednesday.

So many wonderful memories of Carl and Andrew, I wanted to share some of my favorite pictures of the two of them!!!

Andrews celebration of life was very moving, and so meaningful!!! Shelly Erdmann (Baldy's mom) Sydney, baby Cara, and I surprised Deb and Jerry on Sunday evening when we arrived in Virginia to be with them. Deb & Jerry and we, were all in tears as we exchanged hugs, it was so good to be there with them. We were so glad we were able to go!!! Thanks to Jeff for helping us to get there!!! Memories shared, funny stories, and laughs through the tears are what we all experienced. It was so wonderful to hear stories told about Carl, some that I had no idea happend :0), it warms my heart to know how much Carl meant to Andrews family, and remember how he just made himself at home, with Andrew and Deb in their room at the Donald House :0) It is with our memories that will remain in our minds forever, and what will keep our two boys alive and close to our hearts until we are united with them again one Glorious day!!!

Andrew Loved funny t-shirts, especially ones that were kind of off the wall!! A few months ago we sent Andrew a couple funny shirts that I found, that I thought had "Andrew" written all over them :0) One of them had a couple of cartoon dogs on them. One of the dogs is looking back at the other dog, (who is sniffing his butt) and he says "Do I know you?" :0) It is so cute, and so Andrew!!! Andrew's brother Dan thought Andrew should be burried in that shirt, but Deb thought it was not quite appropriate :0) Andrew was instead, wearing a Dave & Busters t-shirt, which was so fitting!!!

We met so many kind, wonderful family and friends of Andrews! It was so amazing to have so many remember, and know of Carl :0) Baby Cara was introduced as "Carl's baby sister" and how everyone smiled about her story (our little gift from Carl) and thought she was so precious!!!

Andrew and Carl, are surly enjoying their Paradise, and smiling down on their Loving family and friends, as they know how much they were Treasured in all of our lives!!!

God Bless the Spradling family, and may God wrap his loving arms around them and give them comfort during this painful time. We never can get over the loss of a child, but we can ask God to help us through each day, as we learn to grow, and help others. We remember the strength and courage, our Angels displayed, and that helps to give us the nudge to carry on for them, and because of them!!!

As forAndrew and Carl...I know these two are together up there, Happy and knowing the Joy that only Heaven can hold!! We also know that they are having a ball again, and drumming up pranks and practicle jokes together!!! Knowing the two of them are together, is so comforting, I am not worried about Carl, because I know he is in the best place, with his best buddy!! Whenever we would arrive at the Donald House, Carl would take off instantly to find Andrew!! I never really worried about him then, as I knew he was in good hands,doing what he really wanted to do, and I know he is again... with Andrew!

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Wouldn't you love to know what these two were talking about? :0)

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Carl laughing at Andrew, he usually had a smile on his face when they were together, especially when they were up to something.

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At the Donald House in Rochester, having fun doing a volcano experiment!!!

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The boys at a Hotel enjoying the pool!!!

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Carl trying his best to Wack Andrew with one of those foam noodles :0)

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Andrew or Carl...Always trying to egg each other on!!! :0)

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Kala, Katie, Carl and Andrew....spotted a Limo on the street, and curiousity got the best of them :0) They had to go check it out, and find out who that Limo belonged to!!! I don't remember who it was???

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Andrew always let Carl share rides with him on his bike, scooter, or skate board!!!

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Andrew Always watched out for Carl and helped him like an older brother....as I am sure he is doing in Heaven.



Hello to all our dear family and friends

We are so heartbroken, and sad to have learned that Carl's best buddy Andrew has passed away. Andrew had a massive heart attack early Monday afternoon. Andrew and Deb were in St. Louis at the Hospital there, and staying at the St. Louis Donald House, preparing for Andrew to recieve a new heart. Just as Carl was healed of cancer in Heaven, Andrew now has a perfect heart, and is enjoying his reward of Eternal Peace and Joy! Carl and Andrew are together again, and we are sure they are having a ball, and planning silly pranks again!! God Bless Andrew and all of his family. May Andrews family feel God's comfort and peace in these difficult days ahead. We are so Blessed to have known Andrew and his family, as we believe God had a plan for these two boys.

Andrew's website is ANDREW'S PAGE

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Saturday, June 10, 2006 6:44 AM CDT

Good Morning to everyone this Saturday!!!

Very Sadly, Sydney's Grandpa Doyle Bladon passed away on June 4th...Sydney's 13th Birthday. Grandpa Loved Sydney so very dearly, and the feeling was so mutual...Sydney adored her Loving Grandpa, and she will always cherish her special memories of all the precious times spent with her Grandpa Bladon! We are sure her Grandpa chose this special day, the date of Sydney's birth to be his Eternal birth date!! God Bless Grandpa's Memory

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Today "Carl's Commandos" will host our "Alex's Lemonade Stand" at Canturbury Downs Racetrack!!

The stand will be open around noon until the end of the days racing, about 6:00 p.m., inside on the upper level. Last year there was also a small stand on the lower level near the bottom of the escalators, we are not sure yet if Canturbury will be setting up the second stand again this year?

If you are looking for something fun to do today, stop out at Canturbury Downs and enjoy some Horse racing, and grab a glass of Alex's Lemonade!!!

Tomorrow, Sunday June 11th, Mary Hollway and the Hammer family will be holding an Alex's Lemonade Stand at the Mall of America!!! Another Great Opportunity to help support the fight against Pediatric Cancer!!!

We are very Proud of Bryan, as he Graduated this past Monday!!! He was an Honor Roll Student and had a Fantastic Senior Year, as well as a Wonderful High School career!!! Bryan had so many Great Accomplishments, while overcoming various trials and difficulites along the way. When times got rough, Bryan remembered why he would try so hard, and fight so strong to stay on top...His little brother and Angel Carl, always on his mind and in his heart to motivate him to never give up!!! Bryan would remember how Carl wanted so badly to just go to school like all of the other kids...to have the opportunity to learn...That is all Carl wanted to do with his whole heart. Such a small wish for such a little boy, and so taken for granted by so many others, that will never know the appreaciation, or the pain of hard lessons learned. We couldn't be prouder of Bryan, and we know Carl must be smiling down on his big brother, and so very Proud too!!!!!

Check back for photo's soon!!!


YOU ARE INVITED TO ~

BRYAN'S OPEN HOUSE GRADUATION PARTY ~ combined with our Annual 4th of July Hog Roast Party

AT THE ROBINSON FARM ~ 69118 370TH ST. FRANKLIN MN 55333

SATURDAY JULY 1ST, 2006 ~ 4:00 PM TIL ?

We will be celebrating Bryan's Graduation here on the farm combined with our Annual 4th of July Hog Roast Party on Saturday July 1st. If you are reading this, you are invited to join us in a fun day of Celebration!!! We will start about 4:00 til ? In the past we have had a Excellent display of Fireworks, and this year will be no exception!!! Please come and join us!!! Bring your lawn chairs, and plan to stay for the Fireworks!!!! We have room for camping, and several Hotels close by for overnight guests!!! If anyone has any questions or should need directions please give us a call. Home 507-557-2941 or Cell phones 507-430-2445 or 507-430-2446

Thanks to everyone for stopping by and for all of your continued Love and Support!!!

Love & Peace
Kelly & Tom
& Family


Thursday, May 25, 2006 11:16 AM CDT

Happy Memorial Day to Everyone!!!!!

A Time For Remembering

To the living
I am gone
To the sorrowful,
I will never return
To the angry
I was cheated.

But to the happy,
I am at peace.
And to the faithful,
I have never left.

I cannot speak,
But I can listen.
I cannot be seen,
But I can be heard.

So as you stand upon a shore,
Gazing at a beautiful sea-
Remember me.
As you look in awe at a mighty
Forest and its grand majesty-
Remember me.

Remember me in your heart,
Your thoughts,
And your memories
Of the times we loved,
The times we cried,
The times we fought,
The times we laughed

For if you always think of me,
I will have never gone.

By Debbie Ann Walters TCF Tulsa, OK


Greetings to all our family and friends this Thursday!!!

Thank you everyone for all of your notes and Baby wishes!!! We are very Blessed, and so Happy to have our little sweetie here with us at last!!! I will continue to journal on the baby's growth and progress, and try to add lots of growing pictures :0) So that I don't take over Carl's website with the baby, I will be keeping her own webpage running, and updating it regularily!! So for baby news and updates, please go to Cara Joy's webpage, you may click on the link above, or type this URL in your browser ~

www.carlsgift.com ~ to access Cara Joy's baby site!!!


A second Memorial Day is upon us. We found some pretty Orange tiger lillies, and other Orange coordinating Annuals to fill Carl's wagon for display at the cemetery. Last year we filled his wagon with fresh cut Orange roses, which were so Beautiful. With the windy, rainy weather we had, the flowers didn't hold up very well. So we decided to go with sturdier, heartier, plants that we can bring back home later and enjoy!! We also have a new Orange spinning tractor to put up at the cemetery :0) The wind really beat up the frist one from last spring, but they are so darn cute, and we know Carl would just Love that tractor, so we want to put up a replacement!!!

We also have to contact the Memorial Stone company to find out about adding baby Cara's name to his stone. Right now it reads...Brother of Bryan, Sydney, and Sam. It wouldn't be right to not include his little sister and gift to our family Cara Joy!!

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School is almost over, and summer will begin soon!! The kids are ready for baseball, and swimming, and enjoying their freedom for a couple of months!!! We will be having a busy summer with lots of Events coming up!!! First off Bryan will be Graduating, then we will be holding a Alex's Lemonade Stand at Canterbury Downs Racetrack on Saturday June 10th. I will not be at the stand this year, due to my Nephew Jeff's graduation open house on the same day. Tom and Team "Carl's Commando's" will be doing the Lemonade Stand on that Saturday!! Also our Friends Mary Hollway and the Hammer's will be holding another Alex's Lemonade Stand the same day at the Mall of America again!! We are hoping our combined Minnesota Efforts will be very successful and profitable this year!!! If anyone is interested, and looking for a Great Event to support, please consider stopping by one of our stands to be held on Saturday June 10th!!! Also through Jay and Liz Scott, we have set up a link for online donations to go directly to Alex's Lemonade Stand Fund!! If anyone is interested in making an online contribution to Alex's Lemonade Stand...This is a secure online method to make a donation!!! "Carl's Commando's" will continue to Support Alex's Lemonade Stand in Honor and Memory of our Angel and Hero Carl, and for all of the fallen Hero's that this terrible disease has claimed!!!

A few weeks ago, Alex's Lemonade Stand contacted our group "Carl's Commando's" to ask permission to use one of our group photos taken from our first Lemonade Stand that was held at the Metrodome in 2004. They will be using the photo in a couple of publications!!!
One of them is a book on Alex which is part of a series called “Young Heroes,” and the other one is a book titled “The Practice of Public Relations.” Both are educational books to be used in Elementary Schools and Colleges respectively.

This is the Photo that will be published in the two books!!

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We are so VERY Proud and Honored to be considered, and included in both of these publications!!!

In July we will be gearing up for the Redwood County Relay for Life, as Carl's Commandos we will join together again to help raise dollars for the Event, with donatons to be directed to Pediatric Cancer Research!!!

Carl left us with a Huge Legacy...To help fund research for Pediatric cancer, and in his Memory we will continue to "Fight For A Cure"!!!!

We hope you all have a Wonderful Memorial Day Weekend!!! We are keeping our fingers crossed for nice weather this year!!! Please keep in your Prayers all of our friends in this battle against cancer and other illness.

And Remember all of the soldiers fighting for our Country, and are away from home and thier loved ones.

Love & Peace

Kelly


Wednesday, May 17, 2006 3:58 PM CDT


"Monday's child is fair of face"

Cara Joy is born!

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Auntie Janet visits baby Cara

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Sissy holding her little sissy

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Grandma Phyllis visits on Monday

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Grandpa George with Cara

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Cousin Sarah "Rah Rah" with Cara

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Cousin Kate holds Cara

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Big brother Sam with Cara

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Daddy with his little girl

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Mommmy with baby

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Cara hanging on to her Nuk

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Loving Nurse Kim who took care of brother Carl, enjoyed taking care of little dollie Cara

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Wonderful Dr. Rossow holds his newest patient Cara

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"I don't know what you think is so cute about this Bonnet?"

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Ready to go home!

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Two sisters watching American Idol :0)

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ENJOY EVERYONE!!!!!

Welcome to the World our Precious little Girl!!!!!

Cara Joy Robinson ~ Born Monday May 15th at 12:35 am

Weight ~ 6 pounds 8.2 oz

Length ~ 20 inches

head ~ 13 inches

she is so Beautiful with dark hair, dark blue eyes, and sweet chubby cheeks!!

Cara tried to come on Mothers Day, but made her appearance at 12:35am instead :0) She wanted to be born on the 15th we guess, and have a Birthday of 5-15 :0)

We are so Happy and so Excited to share her with everyone!!! We just got home from the Hospital this afternoon, and our new little sweetie has setttled in just perfect!! She is a very content baby, and so very sweet!!!

I am going to go through our pictures, and try to get some downloaded soon!!!

Love and Happiness!!!

Kelly


Saturday, May 13, 2006 8:17 PM CDT

HAPPY MOTHERS DAY!!!!! To all Mothers, Grandmothers, Aunties, Special women in our childrens lives!!!!

Wishing everyone a Happy Blessed Mothers Day wherever you may be!!!

We are doing alot of walking, trying to jump start labor!! We are very ready to have this baby, and very Anxious to meet our new little Gift from God and Carl!!!

God Bless and have a Wonderful weekend!!!

we will keep you posted!!!

Love & Prayers
Kelly & Tom
& family


Friday, April 14, 2006 8:27 PM CDT

Good Evening this Wednesday!!!

New "Mom's Blog" on baby website, you may click link above, or click right here ~ www.carlsgift.com

I will try to get back on here soon to update, and add some pics of Bryan's Prom from last Saturday night!! He was quite the dude!!! :0)

Love & Prayers

Kelly
*************************************************************



Hello to all!!!

We have a new little addition to share!!!


OK not the main one we are waiting for...Sam has his very own little pal "Harley" Check out photos :0)

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Sam is thrilled with his new little guy, and playing with him non-stop!! Pika & Daisy do approve of this new intruder :0)

Will update more soon!!!!!

Love & Prayers
Kelly

*************************************************************


Happy Easter!!!! New Pics from our weekend!!! Enjoy!!!

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Uncle Denny (Tom's brother) AKA "Papa" with our niece & nephew (Godson) twins Kody & Kaylee

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Mandi with Kody ~ coloring Easter Eggs

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Sydney & Sam with Kaylee ~ coloring Easter Eggs

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Kaylee in her pretty Easter Dress

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Kody with an orange balloon ~ getting ready to do a balloon release for Angel Carl

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1 - 2 - 3 Release!!!!!

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And in a tree, they did stop...but only for a few moments as the wind carried them back out and in to the sky!!! Heavenward to our Angel Carl!!!

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Tom, Sam, Kelly (with baby Robinson) & Sydney...missing from picture~ Bryan and Angel Carl

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Visiting Carl's grave...Auntie Joy decorated for Easter with two adorable little rabbits, holding little buckets with filled candy eggs :0) The little buckets were marked "Carl's Easter Eggs" & "Take one!" for any visitors to help themselves :0) Today was a very chilly, windy day, but the sun came out to change dreary to pretty when we went to the cemetery this evening!!! HAPPY EASTER CARL!!! We Love you and miss you so much sweet baby.....

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Hello this Good Friday evening!!!

We wanted to Wish all of our dear Family and Friends a very Happy Blessed Easter

Thank you to everyone for thinking of us, and checking in as often as you do, we are very Grateful for all of your Loving support and well wishes always!!!

We are having a Beautiful weekend so far, the weather has been very warm and sunny. It has been nice working weather, and Great weather for Sam to be playing outside!!! Tom and the kids have been busy getting the baby/Sam's bedroom painted with a new look and feeling!!! The kids did not want to let go of the bright orange we surprised Carl with, when he arrived home from NYC with Dad from one of his trips. So we settled for a toned down versioin of a light orangey shade...called Golden Dream :0) I think that name is so fitting.... as we Dream of our little Angel running and playing on the streets of Gold! It is taking two primer coats to cover the bright orange, so it should be all finished tomorrow!!! The baby crib bedding we picked out is called Safari from Target :0) It is neutral colors, that will coordinate nicely with the new paint color. I can't help but think of Carl with most everything I do, and when I saw the adorable animals on this bedding, I knew it was just perfect, I am sure Carl would have chosen this one too!!!

Aside from our hustle and bustle around the house....getting ready for our new little addition - I think they call this "Nesting" :0) We will be enjoying some traditional Easter festivities with our family this weekend!!! Tomorrow will be the Annual Easter Egg Hunt in the Morton City Park...Then we will join Mandi and our precious little niece and nephew twins Kody & Kaylee for some fun Easter Egg Coloring at Grandma & Grandpa Robinson's!!! On Easter Sunday we will be spending time at Uncle John & Auntie Shiela's for dinner with all of our family that will be able to come!!! We are looking forward to seeing everyone that will be coming home!!!

To all of our family and friends everywhere, we wish you a Beautiful Easter with all of the Love and Happiness in the world, May God Bless you all

Love & Peace
Kelly


Wednesday, April 5, 2006 7:39 PM CDT

Good Evening this Wednesday!!!

It is hard to believe that Easter is nearly here. Soon it will be time to color Easter Eggs again, and another Holiday to remember and miss our little Hero and Angel. If we could only stop time for awhile, or go back and re-live the moments that somehow escaped us so quickly. But reality will not allow such a wish, only in our memories and dreams may we capture the Love that will never die.

The weather has been getting nicer, with the signs of spring very much upon us!!! I noticed today that the grass is starting to show sprigs of green!!! OH MY...I wonder how long before the Mommy flowers will Happily Greet us again!!! I remember last year, thinking I had never before seen so many Mommy flowers everywhere :0) Sam got out his dirt bike last night, and rode around for awhile, it was good to hear it's roar as he made his rounds about the farm!!! It will be good to get outside and spend time doing those things we couldn't do all winter!!!

The doves "Carl's Angel Wings" are also showing signs of Spring :0) We have a few pairs sitting on eggs, and some new little babies in nests, getting ready to join the ranks of young homers!!! I am very excited and anxious to be able to get back at my bird training and chores!!! As soon the pregnancy is done, I will be able to "Dig In" once again!!! We are anxious to see how the doves will do this year, and we are expecting better success than last year!! We have a mixture of birds we are training, several are offspring of the Male that was released at Carl's Funeral, and should have excellent homing blood. Also our friend Jeremy gave us a few of his young last summer, and we are excited to see how these turn out as well as our babies we raised from last year!!

We are getting closer and closer to the baby's due date!!! May 25th is coming fast!!! The other kids were a couple weeks early, so we are hoping this baby is a couple of weeks early too!!! If this is true, then we are looking at about 5 more weeks!!! I am feeling great, and still working 6 days a week!! I hope to keep working as long as possible, to allow me to use my Family leave after the baby arrives, not before. I am planning on taking 12 glorious weeks off from work, and enjoying the summer with all of the kids home!!!

Please remember all of our friends battling cancer or other illness, and keep families that are grieving the loss of their child in your Prayers this Easter season.

HE IS RISEN

Love & Prayers
Kelly


Saturday, March 11, 2006 8:02 PM CST

Good afternoon this Blizzardy Monday :(
I guess we will have a little more winter before spring hits.

Here is the link to Bryan's Story in the St. Paul Pioneer Press ~

Student athlete driven by hardship, Senior motivated by cerebral palsy,sibling who died of cancer

BRYAN YOU ARE SO AWESOME!!! We are so proud of you!!!!!

Hopefully everyone is home safe and sound and warm this evening. Praying for a nicer day tomorrow!!

God Bless

Love & Peace
Kelly

**************************************************************


Good Evening this Saturday!!!

We just got home from Sam's 2006 Hockey Banquet. Sam received a medal, and a very speical "Doug Houle Sportsmanship Award" Here is a couple of pictures, the first one is of all the DHSA recipients!!! And the second picture is of the three kids together tonight!!!

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Sam had a very Exciting first year of Hockey!!! He started out with very little experience, and has come a very long way by showing so much improvement, and growth throughout the season!!! We are very Proud of our SAMBONIE!!!!

Bryan has also been receiving some recognition the past few weeks!!! Be sure to check out his website for his latest update!! He was interviewed, and will have a story in the Monday's editon of the St Paul Pioneer Press!!! I will try to get a link to the story when it is available!!!

Sydney has been busy cheering her Big and Little brother on, and just being a Great sister!!! Syd has taken a break from her horse riding lessons since her ear surgery. Everything has healed well, and she should be back in the saddle soon!!!!

This morning on my way to work, I noticed several groups of Canadian Geese flying overhead (A true sign that Spring is Marching in!!!!!) The sight of the Geese made me smile, as I always will hold dear in my heart, Carl's love for animals expecially birds, and how he loved to feed the Honkers at Silver Lake Park in Roch!!! We have Great memories of walking around the park, dodging the "bird cap" and tossing out loaves of bread feeding the birds :0) But with these memories, comes the sting of pain as we miss Carl so much.

THE FOUR LEAF CLOVER FOR GRIEVING FAMILIES

HAPPY ST. PATRICKS DAY TO ALL!!!!!

Please remember to keep all of our friends battling cancer or other illness in your Powerful Prayers, and Please remember all of the Grieving Families, that have lost a precious child, and miss them so much.

Until Next Time ~

Love and Prayers

Kelly

P.S. be sure to visit the New Babies Webpage for updates, and watch for new ultrasound pics coming up soon!!!


Sunday, February 19, 2006 6:37 PM CST

Good Evening this Sunday!!!

Some fun pictures to share ~ from the past July 2004 and from today (02-20-06)

Remember Carl with his sweet little county fair steer ~ Spike? :0)

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Sam and Carl had a wonderful experience at the fair showing their animals!! Sam in the show ring, and Carl to every passer-by that would stop to look at and pet his cow!!

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This is my favorite pic of the boys with Spike ~ It should have a caption reading "Been farmin long?" :0)

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Here is Spike all grown up!!

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And here is Sam & Sydney by Spike and Spot (Sam's cow) by the feed bunk today

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Sadly, Spike and Spot will be leaving the farm in a couple of weeks. It is hard to give up those memorable ties that had such a connection to Carl. We will always remember how Proud he was of his sweet cow Spike, and the special time he enjoyed so much, at the County Fair :0)

The Freezing temps were a shock to our systems here in MN the past couple of days, but it is warming up again, and we are excited to have our 20's back tomorrow!! We have been very spoiled this winter, since January was the warmest January in any of our memories...dating back to the 1800's. So when we got hit with below zero, we don't know how to handle it :0) I would like to think that Carl has had a part in sending us this unseasonably warm winter, after all his Mommy is pregnant, and drives a rural mail route for her job...I am sure he is watching out for all of us, Dad too, since Dad drives a snowplow :0) One drawback of the warmer temps has been slushy roads, which can get slippery :0) Just ask Dad, as he has been called...about 5 times to come to Moms aid and pull me out of stuck situations :0) Dad has been overwhelmingly Happy to come to my becken calls, with a smile on his face, and a chain in hand :0) THANK YOU CARL!!!!! And Dad!!!!! :0) We were Amazed to hear of all the snow NYC received. It brings me back to winter of 2003. Carl and I were in the city for a few weeks in February, before his transplant in March. We got dumped on one Sunday night (nothing like this past week). I had quite a time pushing Carl in his stroller over to Sloan for his appts. I remember the snow was up to the top of his wheels as I was heave-hoeing him through the snowbanks. Some of the sidewalks were shoveled, but most were not. And it seemed the intersections were the worst. Oh how we would do that again, and again, if only we were given the chance.

We enjoyed another of Sam's hockey games last night in Marshall!!! These little guys are so Awesome and so fun to watch!!! It is amazing how much Sam has improved since he first started skating in November. We even caught him "Celebrating" after his team scored a couple of goals...Skating while lifting one leg up, and holding his stick up in the air!! It was too funny :0) I will have to try to get a picture of that at his next game!!! Here is Sam's schedule for the remainder of the season ~

New Ulm Jamboree February 25,26

Saturday
8:00am VS. Mankato (Blue) (North Rink)
3:15pm VS. Mankato (Wild) (South Rink)

Sunday
11:30am VS. Faribault - (North Rink)

Worthington Jamboree March 4,5

Saturday
2:30pm VS. Sioux Center

Sunday
8:00am VS. New Ulm 2
1:30pm VS. New Ulm 3

So we will be cheering Sam on for the next two weekends!!! GO SAMBONIE!!!!!!

Thank you all for continually checking in, and for keeping the Prayers flowing for our family, and for all our friends!!! Please keep the Prayers flowing for our sweet little friend Christi Thomas ~

CHRISTI'S BLOG SPOT

And for our Buddy Andrew ~

ANDREW'S PAGE

May you all have a Blessed week!!!

Love & Prayers

Kelly


Thursday, February 9, 2006 8:49 PM CST

HAPPY VALENTINES DAY TO EVERYONE!!!!!

Check out the "New Baby's" Webpage!!! Link is above ^ right below the preganancy ticker!!! On Tuesday/Valentines Day, We will begin our "100" day countdown...to our baby's arrival!!!!

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Good Evening this Thursday!!!

A long over-due journal!!! Thank you for checking in, and as Always for your Love & Support!!!!!

We had a Wonderful visit with Deb & Jerry, & Andrew (Who is doing Fantastic!!! PRAISE THE LORD) And the Erdmann's during our trip to Rochester!!! Andrew's request, as he was just out of surgery, and groggy, tired, and sore...Was "TRASH PAULA'S OFFICE" (at the Donald House) So as you can see, the kids made Andrew proud!!!!

Here you see Sam, Ashleigh, Justin/Baldy & Syd after they toilet papered Paula's office, and saran wraped Peef (all sisors enclosed) and taped him tight!!!

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Andrew is doing Great!!! After spending a short time at home to re-group, Deb & Andrew will return to Roch, and the Donald House as Andrew will be awaiting a new heart!!! We are just Thrilled he is doing so well, it is really very Exciting!!! After his back surgery, he even grew 6 inches!!! We are sure his little tag-along Carl, is watching over his Dear friend!! Please continue to keep Andrew in your Prayers, as he continues to recover, and awaits his next Miracle!!!

ANDREW'S PAGE

After a week back home, our family enjoyed another weekend of Hockey!!! Sam played in the Rewood Jamboree, and even got a goal the first game!!! GO SAMBONIE!!!!

Here you see our friends Gloria with Austin, and Auntie Sheila helping Sam take off their skates after the game :0) Talk about a couple of stinky boys :0)

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Thanks again to all of Sam's fans that come to help us cheer him on!!! He is so Proud to be playing, and he is really doing pretty good for his first year in Hockey!!! He can't seem to get enough of it, as he spends most of his free time (aside from homework) hitting a ball around the house with his stick! It has become very anoying, and irritating, but we know if he still had his little buddy around to play with, he would be doing other things, and since he seems so Happy...How can you get mad!!! Tonight Sam and Dad are up at the Arena, watching the boys Highschool Hockey game!!! I think Tom is hooked too :0)

Here is a pic of Sam after receiving his medal, after the final game of the jamboree!!!

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Sydney is done with basketball now, but will continue with her horse riding lessons!! She had surgery on her left ear on Wednesday to remove a tube (still in from 5 yrs ago) that has been causing some ear infections. She is doing well, she just needs to sit out of sports for a couple weeks to make sure everything heals properly. Both Syd and I spent some time at the Hosp/clinic on Wednesday. She had her surgery, then I zipped over to the clinic for my 25 wk prenatal check up. It also was time for the routine 1 hr fasting glucose testing. Syd and I both came home with bandages from IV/needle pokes. We reminiced about how many more pokes our sweet Angel Carl had to endure throughout his treatments. I don't think a needle will ever bother any of us, as we remember how our precious little boy would rarely complain. The results by the way of my glucose test were over the limit, so I will be returning to the clinic tomorrow to do a three hour glucose test. This same thing occured when I was pregnant with one of the boys, and it came out just fine in the end!!! Everything else is going Great!!! My belly is measuring at 26 weeks, and I definitely feel like it is growing by the day!!! We are able to feel the babys kicks and punches, as they are getting stronger too. The other night Sam put his hand on my belly just as the baby let out a huge kick... Sam burst into a laugh from the toes all the way up... Sam giggled and giggled :0) And he couldn't stop :0) We both started histerically laughing :0)

Bryan, Tom and I enjoyed an evening out last Friday night as we had got Bryan tickets to Bill Engvall (One of the Blue Collar comedy tour guys) for a Christmas gift!!! It was very funny, and all of us laughed and laughed!! After the show Bryan tried his luck (didn't have any) on a little video poker, and slots at the casino. It was fun to get out and spend some time with Brayn!!! He is sure growing up fast, it is hard to believe he is 18 and will be Graduating Highschool this spring. It seems just yesterday, he was just a little guy crying as he was getting on the bus to go to Kindergarden.

I would like to ask our Faithful Prayer Warriors to continue to keep our Sweet Precious Christi Thomas in your Prayers. Christi just finished a round of heavy chemo to hopefully hault her disease, and provide some pain relief. How exhausting it is fighting cancer in your child, and to keep up that fight with every ounce of hope, a family needs Prayers for strength and courage. Here is a link to Christi's Blog, Angela and Shayne have been updating daily, and sometimes two or three times a day! Please join us in Prayer for this darling child.

CHRISTI'S PAGE

Please also remember all of our friends fighting cancer or other illness in your Powerful Prayers!!!

Until next time ~

Love & Peace

Kelly


Wednesday, January 25, 2006 7:35 PM CST

Hello Dear ones!!!

Thank you for stopping by, and for all of your continual Love and Support!!! It is Always so good to hear from all of you!!! You put a smile in our Hearts :0)

We have been Enjoying the kids and their winter sports, and keeping busy, is is certainly making the weeks fly by!

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Sam has been having Hockey games for the past two weekends, and he will be in a couple of Jamboree's coming up!!! Last weekend we had quite a cheering section for number 25 Sam Robinson!! It included, Grandma & Grandpa Robinson, Auntie Joy, Uncle Clair, Uncle Chuck, Uncle John & Auntie Sheila, Sarah & Kate, & Auntie Janet & Uncle Mark!!! I wished I would have got a picture of Sam with all his fans!!!

Sydney has been busy with Basketball, practicing nearly every night after school. She has had a few games, and she is having fun!! She gets frustrated though, as she wants to play more, but with the number of girls on her team, it is hard to get them all in for any length of time. Sydney has also been taking Horse riding lessons on Saturday mornings. She was excited last week when she came home and reported that she has started to lope!! One of our horses "Dusty" had spent some time in training this past fall, and now knows commands/signals (leg pressures) that none of us know. So now Syd will be learning the same signals, and commands that Dusty has learned so well. She tried riding Dusty after he was finished with his training, and had an experience where he started running (was giving the signal to run) unaware by Sydney, so she was a little frightened to say the least. We then decided Sydney needed to understand what Dusty has learned!! So she Cowgirls Up on Saturday mornings!!!

We plan on heading to Rochester this Saturday, to visit Carl's sweet buddy, Andrew and his Mom & Dad Deb & Jerry!! Andrew will be having surgery tomorrow, Thursday Jan 26th. It sounds like they heard Good news at Andrews appointments this week so far, and they got the go Ahead for surgery to fix Andrew's back to make more room in preparation for his heart transplant!!! We also look forward to seeing the Erdman's again, and doing a House Supper with them at the Donald House!!! We also look forward to seeing other friends that we know and Love, that have touched our lives through Carl. Please join us in Powerful Prayer tomorrow as Andrew will undergo surgery. We Pray that surgery goes perfect, and that Andrew has a complete and speedy recovery!! We send our Love and Prayers Andrew!!!

ANDREW'S PAGE

I would also like to ask our Wonderful Prayer Warriors for your Awesome Prayer Power for our Sweet friend Christi Thomas. Chirsti is just out of a new treatment at CHOP, and is slowly recovering. Christi has a new Blog on her website, so her parents can update daily, and can also get notes of encouragement from all of us!! Please keep Chirsti in your Prayers, as she is facing disease progression, and with that comes so much fear of the unknown. We Love You Christi and we send our Prayers and Positive Energy as you continue your brave fight!!!

CHRISTI'S PAGE


Thank you all for your Love & Prayers!!!

God Bless

Kelly & Tom
& Family


Monday, January 16, 2006 5:57 PM CST

Good Evening this Monday!!!

Are you ready for babys pictures? :0) We had our 21 1/2 wk ultrasound this morning!! We were able to capture a few neat photos of the baby!!

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Everything looked very good!!! The baby is still right on target with the original estimated due date of May 25th. The babys weight at this point is 1 pound 1 oz. :0) We did not find out the sex of the baby, so it will still be a Big surprise on D day when our little bundle arrives!!!!! Cousin Jenny came with to be with us for the ultrasound, it was good to have her with us to share this special moment!!! THANKS Jen so much!!! We Love You!!!

We had a Wonderful New Years Eve weekend with our Roch friends, and enjoyed doing a House Supper at the Donald House on New Years Day!!! It is Always so bitter-sweet to be at the Donald House, it brings back so many memories...I was walking around the lower level halls with Shellie (Justin/Baldy's Mom) as we were looking at the different things on the walls and in the lobby, I stepped in Paula's office (Carl's favorite office girlfriend) and I noticed a couple of pictures Paula had sitting there of Carl. Of course the tears started to flow and I lost it. We just feel so Blessed that he was so Loved by everyone there, even though he was such a little stinker at times :0) He was so Loved, and he Loved everyone so very much too. We are looking forward to our dear friends Deb and Andrew to be coming back to Roch in a week or so. Andrew will be looked at again by Mayo, and we Pray so very hard that everything goes Perfect for Carl's buddy!!! We plan on teaming up with the Erdman family for a House supper once again!!! Please keep Andrew and Deb in your Prayers for safe travels, and for good luck with Andrew's medical care.

We hope you are all enjoying the mild winter weather that we have been here in MN!! We are sure praying that it continues as long as possible!! Spring is on it's way and we are so ready for it!!! Looking ahead, we will be busy soon getting ready for the new baby's arrival, and we will be getting back on track with our Dove training!! We are looking forward to a bigger and better year of managing Dove Releases "Carl's Angel Wings"!!!

You may have noticed that Caringbridge has revamped our guestbook. The older guestbook entries, have been archived, and you may still get to them by clicking on the link ~ (click here to view older guestbook entries) they didn't disappear, they have just been archived since they were getting pretty full. We have been so Blessed to have this website for over three years now!! What a wonderful means of communication it has given our family and friends throughout Carl's journey, and now to still journal as we live our lives, with our Angel Carl by our side. Thank you all for your notes, and words of encouragement that you still offer today, and for all of your Awesome Prayers that we also still feel in our lives. We are so Amazed that we have so much support and Love from all of you yet, but we know how much Love Carl spread, and how much he was loved from all of you too!!!

Thank You and God Bless

Love & Peace
Kelly


Tuesday, December 27, 2005 7:35 PM CST

HAPPY 6th BIRTHDAY TO CARL DECEMBER 28TH!!!!!!
OUR PRECIOUS ANGEL IN HEAVEN XOXOXOXOXOXO

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Thank you all for the wonderful Christmas greetings, the warm notes, emails, Beautiful cards, family pictures, and for all of your Loving Prayers!!!

We hope you all had a Blessed Christmas!! Ours was very nice, we enjoyed our family and relatives that we saw Christmas Eve, and Christmas Day!!! We all ate too much as we seem to do every year :0) The kids were very spoiled by Santa again!!! Our second Christmas without Carl...
still so hard to believe. Through all the fun, presents, laughter, we all were very aware of this empty space in our hearts, a void we will never fill. I noticed that I hardly took any pictures, nor did anyone else. I think I took about 5 pictures total all weekend. The thought of trying to take a family picture is just to painful still. I know Carl is always with us...but oh how we miss his running around, and laughter, and big hugs and kisses. Sydney misses hearing him call her Sissy...She said that Sam called her Sissy the other day, and it felt so good to hear that again :0)

Since it is Carl's Birthday tomorrow (Wednesday) we plan on releasing some "Orange" balloons at the Cemetery in Honor of our little Angel!!! If any of you are able to do so too, It would be Awesome to have balloons sent to Heaven for Carl, from wherever you may be!!!

We are very Excited to be getting together with our Rochester and Camp Jornada friends this weekend!!! We are all staying at a Hotel for New Years Eve, the kids will enjoy swimming and other fun activities!!!! Then we are planning a House Supper on January 1st at the Donald House!!!! It sounds like Stacey has an Exciting agenda planned for all of the kids, including a Midnight(ring in the new year) Parade, and fun activities for the kids at the Donald House too!!! Looking so forward to seeing our friends again!!! When we surround ourselves with those that Loved Carl so much, we can't help but feel him in our presence too!!!

Everything continues to go Great with the pregnancy!! I had a routine tripple screening test done a couple weeks ago (blood test to measure Alfa fetal protein) and the results were normal! Very Good News!! I am holding up well, working six days a week, and hope to continue until the baby nears his/her arrival! Our family has been very busy with the kids activities the past couple of months. Sydney is in Basketball, and has practice nearly every night of the week. Sam is in Wrestling, and Hockey. He practices Wrestling once a week, and Hockey twice a week. His games will begin very soon, so we will be on the go between Sydney's games and Sam's!!! It will be very fun, we do Love it even though it is alot of busy nights and weekends!!! Bryan will be starting Floor Hockey very soon too!!! He is hoping for another State Championship since this is his Senior year!!!

Our family wishes all of you a Happy Healthy Safe New Year!!!!!! God Bless You All, We Love You!!!!!!


New Years Countdown Four Grieving Families ~

CLICK HERE

Love & Peace
Kelly, Tom
Bryan, Sydney
Sam, Angel Carl
& baby?


Saturday, December 24, 2005 1:48 PM CST

MERRY CHRISTMAS to all our Dear Family and Friends Everywhere!!! May you have a Blessed Christmas full of Love and Peace!!!


Click Here for Cute Story


Love to All

Tom & Kelly
Bryan, Sydney
Sam & Angel Carl
& new baby


Saturday, December 10, 2005 9:10 PM CST


Just another pic to add :0) I have received a couple notes about the Pic of the childrens group from church, and there being an "orb" (white circle in the picture) It does make us curious about the possibility of this being Carl present? Last night we had our 4H Christmas party at the Morton City Hall. I took this picture of the little kids playing a Christmas version of "Duck Duck Gray Duck" Notice the empty spot in the circle of kids, notice the "orb" in that empty space? Could it be Carl playing too?
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Good Evening to all!!!

A special THANK YOU to cousin Ann Hauck for the Beautiful tribute "Our Beloved Child Carl" It is just Perfect!!!!!

Thanks to Sweet Niece Jenny for the poem "To My Dearest Family" we can just hear Carl saying all of this!!!

Here are some pics from the 2005 Childrens Christmas Program at church tonight!!!

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The first picture is of the whole group. Sydney and Kate are missing from the picture. Sam is the little King ~ wearing red :0)

If Carl would have been here, he would have been one of the little shepherds. It was very emotional to once again see these little kids, and know that Carl is missing from his group, and to picture how adorable he would have looked with his class. I noticed on Joseph, was a orange ribbon still pinned on his cloak from last years performance. It was a sweet reminder of how our wonderful church family dedicated the program to the memory of Carl, as he had left us for Heaven less than a month before. If Carl were one of the little shepherds, I am sure he would have been so proud, and all smiles :0)

We hope you are all enjoying a stress free Holiday Season as we approach the Celebration of the Birth of baby Jesus. We are all trying to find HIS Spirit in each day, and remember the reason for this season.

We had a wonderful Thanksgiving Holiday here with many of our family present!! It was good to have a full house and lots of activity!! Thank you to all of our Loving family that helped to make this a Special day for all of us!!! We feel so Blessed that you care, and understand our feelings, and our need to make Carl a part of our festivities. It is to Remember that we heal.

I have been doing a little reading lately on Grief, and parental grief. What seems to be a common belief is that parental grief, is a permanent condiditon. It is something that you just don't "get over" or "find a way to move on" But something that you will live with your whole life. It seems that in time, you learn to find more Happiness in your memories, and less pain, but parental grief never ends! To have loved your child so deeply, is to grieve forever.... The latest book that I would reccomend to anyone that has lost a child is called "A Mothers Grief observed" by Rebecca Faber. This is a true account of a Mothers grief, as her little boy's life ended at 18 months as the result of an accident. So much of what she talks about, I could so relate to. I was in tears much of the time reading, but is was only because it struck such a chord, and really hit home with some of the same things I have felt and have been dealing with. One of the struggles I am still dealing with is the fact that I was not there when Carl took his last breath. The kids were not there either. I know Bryan and Sydney have deep pain and regrets too, and blame themselves for not being there. One of the things that this Author spoke to me about, and that really made sense to me was that God was protecting us, and so he put the heavier load on Tom that night. As much as I wish I could change that whole night, I do believe that God had this whole turn of events finely orchastrated. It has been a year since Carl's passing, but I am only beginning to sort through my feelings and emotions, and start to understand.

Things are still going well with the pregnancy!! I am 16 weeks now and counting!!! The baby is getting very active, and is such a comfort to know that "Carl's baby" is such a miracle and gift to our family. I had my latest doctors appt. yesterday, and everything is Great!! The baby's heartbeat was around 154. No sure feelings on the sex of the baby yet? We are starting to narrow down our lists of name picks :0) The name I believe we all agree on if the baby is a little boy is "Jacob" How we came up with Jacob is this ~ Sydney and I were searching through name books and coming up empty handed. Then we came to the "J"'s We were pretty much going down the line then Sydney came to "Jacob" She said "Mom remember how Carl always wanted to be called Jacob!" I looked at her and the tears started flowing... I said "Yes that's it"!!!! Sydney then said "I feel kind of bad that Dad didn't have anything to say about this" :0) Ok to explain this more.... Whenever the kids would play school, or house, or any role modeling.. They would each have a name they wanted to be instead of their own name. Carl's name of choice when playing was "Jacob"...He always wanted to be called Jacob!!! Sarah, Kate, Sydney, and Sam all have fond memories of their play where Carl wanted to be called Jacob!!! It just seems so fitting :0) For a little girl name??? It is still up in the air for now :0)

I would like to request Prayers for all our friends battling cancer, and other illness, and for all of the Angel parents that are missing their precious Angels so very much, especially during this difficult time of the year.

Thank you all for your Prayers, and Support Always!!! We so appreciate everything you have done for our family!!!

My life is but a weaving
Between my God and Me
I may not choose the colors
He knows what they should be
For he can view the pattern
Upon the upper side
While I can see it only
On this the underside.

Sometimes he weaveth sorrow
Which seemeth strange to me
But I will trust his judgment
And work on faithfully
'Tis He who fills the shuttle
He knows just what is best
So I shall weave in earnest
And leave with him the rest.

At last when life is ended
With Him I shall abide
Then I may view the pattern
Upon the other side
Then I shall know the reason
Why pain with joy entwined
Was woven in the fabric
Of life that God designed.

Author Unknown

Love & Peace
Kelly


Thursday, November 24, 2005 6:46 AM CST

Good Morning this chilly Tuesday!!!

A quick note for now ~ Please go to this site

VOTE FOR ALEX

Alex Scott is in a pole for ~ Most Inspiring person of the year!!! Be sure to put in your vote for her!!!

Have a Great Day Everyone, I will update more later!!!

Love
Kelly
*************************************************************







Happy Thanksgiving Dear Ones!!!

We would like to wish everyone a very Happy Blessed Thanksgiving, and Holiday weekend!!!!

To all our Dear family that will not be joining us today, we will be thinking of you and missing your presence.

We pray for safe travels for all that will be traveling to or from their Loved ones over the Thanksgiving Holiday weekend.

Tom and I are bustling around, getting ready for all our Thanksgiving guests!! We are very Excited to be sharing our day with everyone, and looking forward to a warm loving day! We were planning a Hay Ride over to the cemetery, but we are thinking we may need to change our plans and car pool there, since it is so cold and windy. We will decorate Carl's grave and spruce it up for the Holidays!! I found a cute snowman globe light, that is solar powered, so it will turn on automatically at night!! We will also place a wreath that is decorated with berrys, and a few little tractors around :0) We will light his remembrance candle which will burn for seven days at a time. We will be missing our little guy dearly this year, but we will not forget him, and we will make sure we Honor his memory in this special way, as we all Love and miss Carl so very much.

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Last night we did some cleaning and rearanging, and putting away toys to make more room. Sam would bring to me toy after toy of Carl's and tell me who he received it from or where it came from :0) I am so grateful he remembers these things so well, because I have a limited memory on all of this. He remembered a firetruck that was won at a musical chairs game at the NY Ronald McDonald House :0) He also reminded me of a remote control truck that Carl was given by Freddy & Patti on one of our visits to their home :0) We also found in the toy room, a couple little plaster cast fingers that Carl had made in the Childlife room at St. Mary's last October :0) I had almost forgotten about that, I remember Carl had to cast each of his fingers, so he had a whole set of plaster fingers. I didn't think we had any of his little finger casts saved, but we found them in a corner, next to two of his favorite books :0) Carl was famous for hiding things in corners :0) Sam has become so protective of the toys that were Carl's, I almost tossed a little firman guy a week or so back, and Sam said "No that was Carl's" I am sure in Sam's little mind, he is still playing with Carl as he plays, remembering their special times together, and I am sure Carl is right by his side, watching over his brother, and best friend. The little writing at the top of the page, was written by Sam just a few weeks ago. He sat down one night and wrote that about Carl. I was in tears as I read his thoughts, and so moved that he is getting his feelings out and expressing his grief... and healing. Bryan and Sydney are doing well, we talk often, and share our feelings and tears openly. I am so very proud of all of my family, for their strength, and Love they give. We could not make it without eachother, and together, we will remember Carl, and Love him forever.

We are so very Thankful for all of the support we have received over the past year since Carl's passing, and for all of the continued Love and support from all of you that still flows daily. We are very Blessed to have friends, family and a wonderful Loving community to live that has been so kind and caring to our whole family. Thank You all from the bottom of our hearts for keeping us so close at heart and in Prayer. Thank you all for your notes, emails, cards, phone calls... It is so wonderful to know that all of you remember Carl too, at this time of the year, and that you think of us, and above all...share our pain and sorrow, as we reflect on this first anniversary without our little Angel with us on earth.

Gods Blessings to all of you for a Beautiful Thanksgiving and a Wonderful Weekend!!!

Love & Peace

Kelly & Tom
Bryan, Sydney
Sam, Angel Carl
& our little Blessing in the making


Friday, November 11, 2005 9:08 AM CST

Hello to our Dear Family & Friends!!!

Happy Friday, and Happy Vet's Day!!!

Today is a Sunny Beautiful day, we are so Lucky to have continued above average Fall weather!! As I was doing dished this morning, looking out the kitchen window, I could almost feel and picture Carl running in and out of the house, playing, and finding things to do on this Beautiful morning. Oh how I miss my little busy guy. As the one year marker approaches - Nov 26th, we are all missing Carl more than ever. Sam has began searching through catalogs and magazines, cutting out pictures of "Stuff" he wants from Santa...Christmas already??? I can hardly believe this last year has already flew by. It just doesn't seem like a whole year has passed without Carl's little voice, giggle, and smile lighting up our hearts......

Last weekend we made a visit to St. Mary's Hospital in Rochester. My nephew Blake was air lifted there Friday night, as he had a skull fracture from a fall. He is doing well and back to school, Thank Goodness! It was so good to see some of the sweet nurses that took care of Carl so many times. Tom and I remenisced about so many things that Carl did there, and of course we will NEVER forget all the riding around the halls he did.... Even when were would try to keep him resting after a surgical procedure. :0) We miss all of our Roch friends, and all of our Donald House family. When Deb and Andrew come back in January, Tom and I are planning on doing a House Supper for everyone at the Donald House!!! We always enjoy coming back to see everyone!! Tom and I plan on doing the Cruise again next summer!!! We are already talking about it and we have enlisted our sweet niece Jenny (who has now moved to Roch) to babysit the new baby for us!!! Sooo Angie, Glen, Shellie & Rod, Stacie & Kevin and hopefully many more... We Gotta do this again!!!! :0)

In a couple of weeks we will Celebrate Thanksgiving, and remember how Carl left us, the day after. I wanted to just be home over Thanksgiving weekend, so we will be having Thanksgiving Dinner here at our house for any of the family that can come. I know that Carl would want us to be Happy, and be together with our loved ones, and He would too be so Happy to have our family all together. I am sure he will be right here with us sharing everyone's warmth and Love. We are planning on taking a bundled up Hay Ride over to the Cemetery either the Afternoon of Thanksgiving, or on Friday sometime, depending on when most of our relatives will be here. We will light Carl's Remembrance candle, and decorate his grave site for the Holidays! Thanks to whoever left the wonderful Fall/Halloween decorations (pumpkins & flowers) for Carl :0) It is so nice to visit his grave and see all the colorful things there!

Yesterday I had my 12 wk check up for the baby. Everything is going good, and I am feeling Perfect!!! Sydney came with, and she and I heard the baby's heartbeat!!! It was 175 bpm....maybe a little girl???? We don't really care what the baby is, just so it is healthy. I know that sounds like a cleche...but when your children are healthy, you are richer than any amount of money...ever. We are so very certain that this baby was meant to be, and that Carl definitely had something to do with it! I was talking to Deb, Andrew's Mom a week or so ago, and she was telling me that Andrew and she were talking about the situation, she said they could just picture Carl as he rode his little bike up to God and put in a special request!!

Thank you all for your steady Love & Prayers Always!!!

Please continue to keep all our friends battling cancer and other illness in your prayers.


Letter to Mom
by Joy Curnutt

Mom, please don’t feel guilty
It was just my time to go.
I see you are still feeling sad,
And the tears just seem to flow.

We all come to earth for our lifetime,
And for some it’s not many years
I don’t want you to keep crying
You are shedding so many tears.

I haven’t really left you
Even though it may seem so.
I have just gone to my heavenly home,
And I’m closer to you than you know.

Just believe that when you say my name
I’m standing next to you,
I know you long to see me,
But there’s nothing I can do.

But I’ll still send you messages
And hope you understand,
That when your time comes to “cross over,”
I’ll be there to take your hand.


Love & Peace
Kelly


Wednesday, October 26, 2005 8:32 PM CDT

Dear Family & Friends

Please join our family in Prayer, as Carl's very Special buddy Andrew will be having surgery this coming Friday. Andrew will be having a new type of pace maker installed to give him more heart function. We Pray for this surgery to be successful and a speedy recovery!! I know that Carl will be watching out for his close friend and keeping him safe. To visit Andrew's webpage and offer Love & Support you may click on ~ ANDREW'S PAGE

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Carl and Andrew shared many wonderful times together, and those are some of our cherished memories we will remember forever. Andrew and his Mom Deb will always hold a special place in our hearts. Carl Loved Andrew dearly. This last time we spent at the Donald House, Carl was able to enjoy some fun Halloween activities with Andrew. They carved pumpkins together, and shared their visit hanging out in Deb & Andrew's room and the two boys riding skooter in the parking lot, Carl's favorite pastime :0)

Thank You all for all of your many notes, emails and phone calls!!! I am feeling very well, no morning sickness or anything!! Just a little tiredness, but that is to be expectd I guess. We are now 10 weeks and counting :0) I will not go back to the doctor for two more weeks, and then we will be able to hear the babys heartbeat at the exam!! The kids are still very Excited, and enjoying dreaming of what the baby will be (boy or girl) We are not going to find out ahead of time, so they will just have to wait and be surprised!!! We have also been going through some name books, but nothing has been agreed on by everyone....yet

Bryan's Homecoming week was Fantastic!!! He was so Proud to be King!! Sam and I went to their Homecoming game and got to see Bryan give his speach during Half time :0) I will try to get some pictures added soon!!!

Thank you all for checking in, and for all of your Awesome Prayers Always!!!

Please remember all of our friends battling cancer, or other illness and all of the many NB Angel Parents that have lost their children to this horrible disease.

Love & Peace

Kelly


Monday, October 10, 2005 11:46 AM CDT

BREAKING NEWS!!!!! King Bryan will represent Humboldt High School this Friday for their Homecoming!!!!!

Bryan was Coronated Homecoming King yesterday for 2005 Homecoming!!! This is so Awesome and Exciting, we are so Proud of Bryan for this Wonderful Accomplishment in his Senior Year!!!

If you get a chance, Please stop by Bryan's website (link above) and Congratulate him on his King Status!!!!

Love & Peace
Kelly

*************************************************************

Good Morning this Columbus Day!!!

Thank you EVERYONE for all of your Wonderful greetings and well wishes!!! Our Happy News about the baby is so much better, when we can share our Excitement with all of our family and friends and feel such an overwhelming Joy back as we have from everyone that has heard about our baby on the way!!! The kids are so happy and seem so serene with the news!! They could not wait to call and spread their Excitement, and that is what they did right after we got home from our picnic at the cemetery the day we told them. Both the home phone and my cell phone were buzzing for quite awhile that afternoon. We called Grandma Phillis, and were able to catch Auntie Shiela, the girls, and Auntie Jill who was home for the weekend, all in that one call!! Mandi and the babies were also there, but were just leaving as Shiela and I were on the phone, so she missed the news. The kids and I drove down to Matt & Mandis when they got back home, and shared the news with Mandi and we got to see the sweet little twins for a little while too!! It was fun to hear the shock and then Joy as we made our announcement!!

This little baby was not planned, or expected. Tom and I were not even thinking about another child, and in fact earlier this spring, I had a procedure done called (Essure) equal in effectiveness to a tubal. It is a permanent/un-reversible BC method. After a re-check, which confirmed my tubes were blocked/obstructed, I was told that the only way I could get pregnant at this point was by In-vitro. So both Tom and I thought we were done, and would be moving on to the next stage of our lives (middle age waiting for Grandkids) As you can well imagine we were the most shocked to discover our plans have changed.

“If you want to make God laugh….Tell him your plans”

Anyway, not only could we not believe, against all odds, I was pregnant, but against all odds, somehow, it made it through an obstructed tube (High risk of tubal pregnancy) and implanted correctly where it was supposed to. So as surprising and shocking and totally not planned as this turned out to be…..We can’t help but feel Blessed by God for all of this happening… against all odds. We believe that someone else with Higher power must have had something else in mind for us. We also think that Carl must be smiling down, and so very pleased to see how Happy God made all of us, and so many other people that have touched our lives through Carl. This unexpected gift has come at a most “needed” time in our lives…We have all been so sad for so long, and God must have know how badly we needed to have some Love back in our hearts to fill this big void we have felt. So all in all, this must have been meant to be, and we believe this baby was a gift from Carl and Heaven Above. Please keep our baby in your Prayers, as we wait for his/her arrival.

Sydney had a “Carl Sighting” a couple weeks ago. She was at her home volleyball game in Redwood falls, as she was sitting on the bench looking around the community center, she happened to see a little boy walking by that caught her eye. She said that the little boy looked exactly like Carl….he was even wearing camo clothes. She was looking at him and he stopped and looked directly at her and smiled and waved at her. She really believed it was Carl!!! I asked her if she got up and ran to find the little boy (Which I would have probably done) and she said “Mom I couldn’t get off the bench and go running off” When she got home that night, she told me about her sighting, she said her friend Taylor even saw the little boy too. I was not at this game myself, but could kick myself for not going…Sam didn’t want to go, he is getting sick of watching volleyball and he gets bored, so we didn’t go to that game. We have made all of the away games, and we are so Proud of Sydney and her team, they are really learning a lot of skills and enjoying playing together!! Sydney is getting so grown up, she is one of the three tallest girls on her team!!! She is planning on going out for Basketball after Volleyball is done!!!
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Sydney & Sam's school pics...Don't have Bryan's yet

Bryan has been busy with Adapted Soccer! He said his team is not as good as they have been in the past, they are missing some of their key players this year. Bryan is doing well in school, and also keeping busy with his cousins and friends! Bryan has had a most difficult time dealing with grief, especially as the calendar months peel off and we approach fall again, and soon November. Bryan as well as myself, have had a hard time accepting and coming to terms with the night Carl passed away. We both still feel deep guilt as we left him to go to a movie, and not knowing we would never see him again, we left without saying goodbye. We didn’t want him to get upset that we were going to a movie without him, so we just quietly left and didn’t make a big deal out of leaving and in the process, we never kissed or hugged him goodbye. How could we have know this would be his last night? I have tried to imagine how the night would have played out, if the kids and I would have been home, and never went to the movie. I do believe it would have been a horrible scene, and very traumatic had we all have been home. It would have also been so hard on Carl to see all of us so distressed, scared and upset. So I try to find peace by believing that God truly felt He knew what was best that painful night.

Sam has been missing Carl like crazy too, and we think things have got tougher for him as time goes on too. Sam talks about Carl, and thinks about him in most everything he does. He says things like “Carl would have liked this” or “Carl would have liked to do this too” It is so hard to watch Sam playing alone without his little partner in crime giggling next to him. Our living room still looks the same….Scattered tractors, balls, legos everywhere, and a heaping toy-room that you couldn’t walk in if you tried :0) It just will never be the same without those two monkeys teaming up to make tents, and construct the things they used to come up with together. Those memories are so precious, and they will remain in our hearts forever….

The doves are doing well!! We have been doing many funerals, and the few doves that are trained good to home, are homing every time!!! It is always such a wonderful feeling to see the birds return home again!! It is so Amazing that they can actually do this, and it is such a rewarding feeling when they do their job then come back home!!! Since we learned I was pregnant…The dove chores have been turned over to Tom. Something about handling cat or bird poop can be harmful while pregnant. It is killing me though, as I miss spending time in the loft with the birds. It had been my escape, and therapy to work with the doves, even scraping and shoveling poop had been therapy for me!!! Our second group of trainees is coming along good, but has been put on hold temporarily as Tom has been in the fields for harvest the past couple of weeks (Tom has been very busy). Soon the crops will be all out, and the birds can get back on their vigorous training schedule!!! I was asked a couple of months ago to speak at this women’s meeting tomorrow night. They wanted me to do a talk about “Carl’s Angel Wings” at this group in Morgan. So Sydney and I plan on doing a little presentation, and bringing some of the doves for the meeting!! The doves at the zoo will be coming home soon. One of the pairs had a couple of babies hatch several weeks ago. We went up to the zoo this weekend to check them out, but we couldn’t see the babies? I am not sure if they were hiding in one of the nest boxes out of sight? It is starting to get chilly, and they were really puffing up, which is a sign that they are keeping themselves warm. They look very good, and healthy, and these zoo pairs should be ready for breeding this spring, and hopefully give us more quality homing doves to add to early training group!! My hope is to get 30 to 50 well trained doves, so that we can do a variety of options for people for their ceremonial releases! One of the options would be to first release a flock of doves from a beautiful decorated basket…these doves would represent Angles that are coming to meet the departed loved one. Then, a single dove would be released by a family member, to symbolize the spirit of the loved one. The single dove would join up with the flock of doves/ “Angles” and together they would make their journey Home (Heaven) The more doves we can use for these different options, the more beautiful it will be for a families memorial service! Another beautiful release that I am excited about is called (A 21 Dove Salute) this would be an option for a Military Service. We would have three baskets of 7 doves each. The baskets would be decorated in Red, White, and Blue. Then after Taps, or a chosen time, the birds would be released one basket at a time. You can only imagine how Beautiful this display would be, and how wonderful a family would feel to have this release done for their loved ones memorial service!! Carl’s Angel Wings has been a very rewarding Memorial, and we look forward to next spring already!!! We will still be able to do the releases all winter, as long as it is not storming heavily, or terribly windy!! Can’t we skip winter??? :0)

Last year about this time, Carl spent his last Hospital stay at St. Mary’s. It may have been a week or so later…I know it was getting close to Holloween though. I have a couple pictures of Carl and his two friends to share :0) Right across the hall was our sweet little Maya, who was also inpatient that week. Carl rode his little bike around the floor, up and down the halls as he always got away with it :0) He made many trips over to Maya’s room to play, and he was such a little stinker too!!! He found out he could get Maya in a tizzy by teasing her with her toys, and pretending to take them away from her. Maya’s Mom Holly got a picture of him in action as he was teasing Maya one of those days :0) I love this picture, because you can just see the true little stinker in him as he was being such a little turd!! The second picture is of Devin and Carl as they were playing together in the playroom one day. Devin’s little brother Jacob was a precious little baby born with many difficulties. We met Karla way back when while she was at the Donald House with Jacob, and that is where we met Holly with sweet Maya too!!! This particular day, Karla and her family were visiting Holly & Maya and Carl and I at the Hospital, and Carl and Jacob's older brother Devin were enjoying playing together!!! Karla always mentions how Devin still talks about Carl :0) Very precious memories I will forever cherish!!!

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Well I suppose I had better close, before this gets too much longer :0) I want to thank all of you for still keeping us so close in Heart and Prayer! Our family is so very Blessed to have all of your Love and Support as time goes on….and as our lives are so changing. God Bless you all and may you have a Blessed week!

Love & Peace
Kelly








Sunday, October 2, 2005 3:13 PM CDT

Good Afternoon this Sunday!!!!

Here is Bryan's latest Journal he posted on his website today!!!

Hello everybody It's bryan, Things are going great I feel awesome. The reason I feel graet is because I found out yesterday that our family was blessed with either a new Baby Girl or Baby Boy. Personally I don't care if it's a Boy or girl but inside me I know I would like a Baby Brother that way the Boys will out number the girls in our family, the only thing that just matters is that it's healthy and happy. We went over to the Cemetery and had lunch with Carl and I know he was with us in spirit. We had his favorite food Donald's which we had Chicken Nuggets wich was his favorite. As I heard the news tears of joy fell down my face and now I feel like the weight of the world has been lifted from my shoulders. For now I know I have something to look forward too. In a way I feel like it was Carl and the big man that had a lot to do with this,I know he would want us to be happy. My mother said the baby is due towards the end of may which means that the baby will come right before i graduate so it will be there for my Graduation and party.which will make it even better.

Yesterday I went to my auntie sheila's and hung around with Nicky and we watched Animal House a comedy classic "geuss what I am Now a Zit Get it" we also watched Blue Collar comedy Tour rides again Git R Done!

Well till next time peace and love, Bryan

Thanks for stopping by, and for keeping our family in your Prayers Always!!

I will update soon!!!

Love & Peace
Kelly


Sunday, September 18, 2005 7:33 PM CDT

Good Evening this Sunday!!!

Happy Golden 18th Birthday to Bryan!!!!!!!!!!!!!!!!!!

WOW 18 years old, so very hard to believe?? I talked to Bryan earlier today, and he was Happy on his Birthday :0) He will probably spend next weekend here with us, and maybe even get his first trip to Jackpot for a little try at the slots :0)

The summer flew by so quickly for all of the kids. The State Fair was a wonderful first 4H trip for Sydney and Cousin Sarah!!! Both girls won Blue ribbons, Syd for her white pigeons, and Sarah for her chicken breeding pen! They came home with Great memories of an experience they will never forget!!!

The first day of school came and went, and believe it or not, I managed to keep my emotions under control this year, with it being the year that Carl would have started Kindergarden and all. We felt Carl's presence very heavely the night before that first day of school, and I do believe he knew how much we all needed his comfort. Sydney was packing up her backpack with a pouch of colored pencils that she filled up. Out of now where, a pencil hit her in the arm. She was sure she had put all of her pencils in her pouch. Guess what color the pencil was that hit her in the arm? Of course orange!!! Carl has the knack for visiting right before a Holiday or speical day that he knows is very meaningful to us, and he has done this more than once! He must feel all of our energy generating to him as we miss him so much, especially at these special times...

We have been busy working with the doves, trying to get a second group out training. It is going much slower than the first group, but we are still trying hard to get them out flying!!! We were able to help Phil Martin with 4 funerals last week, and then we did 2 weddings this weekend!! So that was very rewarding!!! Thank you to our friend Jeremy for helping us with the two doves for Brandon & Sandy's wedding in Wabasso yesterday, we were able to get the two done on the same day!!!! I was so pleased to go down to our loft about 5:00pm Sat. and one of the doves was back from the 3:30 wedding (probably released about 4:00ish from Gilfillan) and while I was in the loft the second bird landed outside on and droped in the loft!!! So they both got back very nicely from the wedding on Saturday!!

I want to Thank all of you for continuing to check in on Carl's website, we truly Appreciate your wonderful notes and emails, it still gives us Inspiration and Hope!!! We Love you!!!

Please remember in Prayer all our friends that are also battling cancer and other illness, especially

Barb Cornell from Redwood Falls

Christi Thomas CHRISTI'S PAGE

Maya ~ Carl's sweet little friend from Wi, is in the Hosp with a line infection.

MAYA'S PAGE

Love & Peace

Kelly


Tuesday, August 23, 2005 7:06 PM CDT

Good Evening this Tuesday!!!

It is about time for a long over-due update :0) Sorry to be so slacking on the journals lately, I have really fell behind and now there has been so much time passed and catching up to do with all of you!!!

I think when we left off, we had gone on the Cruise for the Ronald McDonald House in Rochester!!! What a wonderful Event that truly was!!! I want to share with you an article Stacey’s Boyfriend ~ Kevin wrote for the Fillmore County Journal.

Cruising for Ronald McDonald House

By Kevin Ostern

To most of us when we think of Ronald McDonald we think of a clown selling fast food. That is unless your family has had to deal with cancer, or other serious illness, then you may have found the House that love built The Ronald McDonald House. Three years ago when my sister died from leukemia, I would have never thought that today I could continue doing something in her memory, but for the third year now I have been able to join motorcycle enthusiasts in southeastern Minnesota for the Cruise.
This year had special meaning for me as I had the privilege to meet and ride with three families who have stayed at the Ronald McDonald House in Rochester. To meet them and their families you see how trivial your day to day problems really are and how we need to be thankful every day for our own good health. Three years ago my daughter Jayme and my friend Pete joined me for the Cruise; last year 10 people joined us; this year there were 22 wonderful caring people riding with us. This year we dedicated our ride to the memory of little Carl Robinson.
Overall this year 870 riders joined the Cruise raising $71,500 dollars for the Ronald McDonald House. To see photos of our Cruise day go to www.campjornada.com
Special thanks to Tom & Kelly Robinson, Rod & Michelle Erdman and Glen & Angie Hookham for letting us be a part of their families.

Thank You Kevin and Stacey for an Awesome day!!!!! It was so good to see Shellie and Rod & Angie and Glen again!!! What a Heartwarming reunion!!! We are so Happy and Proud to have been a part of this years event!!! And we know that Carl was too, as he watched us all ride in to the Donald House in that wonderful Parade at the end!!! Carl Loved being there last year, and I will always cherish those memories of being there with him for the Cruise 2004!!!! We are already looking forward to next years Cruise 2006, and talking about recruiting more riders to join us in our quest to raise dollars for the Donald House!!! Maybe a Harley of our own will be in the picture??? We will see :0)

Congratulations to Melissa (Welter) & Justin Abeln who were Married on Saturday August 6th, 2005!!!!! The Wedding was Beautiful and the day was just as Pretty!!! They had a Gorgeous outdoor ceremony, complete with breathtaking flowers and landscaping. It was also a tear jerker to many of our family, and as sweet niece Jackie put it, we were a bunch of fools sitting there crying :.) You see the music was so Beautiful, and sung by the nieces Jackie, Jenny, & Jessie, then the sweetest little flower girl Anna, that you just want to squeeze and mooch up every time you see her, and every time she talks she makes you smile because she is such a little chatter box :0) And most special of all is that Carl was the little boy to accompany Anna to be the little ring bearer….But this would not be possible, so Melissa kept her plan to have Carl be the ring bearer, and he was recognized as Honorary Ring Bearer, and even mentioned in the program as such and listed as Angel Carl Robinson…………..Cousin of Bride How very touching, and also how very sad. Ok here goes one of the fools crying again………..

We have been very busy with the Doves doing many Dove releases. We brought four Doves to release at Melissa’s wedding, and as soon as I get some pictures (from anyone?), I will try to get them posted! My camera died at the Cruise, but I do have some disposable cameras to get developed, and should have some pictures soon!!!

Right after the wedding, we had a very tragic event in the family. Our cousin Sandy Clarken’s husband Tom passed away from cancer. It all happened very quickly, and really took us all by surprise. Please keep Sandy and her family in your Prayers as she is learning to adjust to her new life without her husband and best friend. She needs many Prayers for strength and courage during this most difficult time.

To bring us up to date with the kids activities in August and the fair, we had a busy week at the Renville County Fair. Sydney won two reserve champion ribbons, one on her heifer (red pole) and one on her steer, both for Showmanship!!! (Second Year in a row) Also she was entered in to the Premier Showmanship Competition, she was too young to win, but it was still very good experience and quite an Honor to be in this!!! Sydney also won Grand Champion on her Pigeons (White Doves) and was awarded a State Fair trip with this project!!! So she is busy packing up and getting ready to head to the State Fair tomorrow with her Doves!!! Sam showed his Heifer in the Clover Bud class, and was just adorable!!! He did a very good job with his Daddys help!! It was a very bitter-sweet experience being at the county fair this year, it was just not the same without Carl there, and Spike his calf, and his sweet little voice trying to get every passer-by to stop and pet his cow :0) At times it was very hard for me to be there, and it has been a very emotional
Few weeks building up to this time of the year, with all of the memories we have stored up in our hearts that we cherish so dearly.

Speaking of emotional time of year, this time of year is also the anniversary of August 18th, the day Carl was diagnosed. I don’t know why this date should still affect me and bother me, but it still does. It brings up so many deep feelings of pain and hurt and fear that I remember from this time three years ago. This morning I was at work, and thinking of this date and what we were doing three years ago today…which would be starting Carl’s chemo, I can remember so vividly those feelings of panic and despair, I could actually smell the family kitchen/coffee room, what do you call this…post traumatic stress syndrome??? If I had closed my eyes, I would have believed someone transplanted me to that room at the Hospital. You know what, if we had the chance we would be right back in the fight, still doing whatever we could to keep Carl here with us, and we would never give up. I say this because I believe that Carl didn’t mind the Hospital that much, he enjoyed being there, and enjoyed socializing, and all the activities too :0) It was certainly not all bad for him, he Always made the best of his time, and was such a great little patient. Ok now this fool is crying again……

I am going to sign off for now and make sure Sydney is ready to head to the Minnesota State Fair tomorrow!!!! I will update much sooner and let you all know how she does with her Doves!!!! Oh if anyone is going to the State Fair, look for her Doves in the Poultry Barn!!! She will be showing them on Thursday!!

Please Keep our dear friends Angela and Shayne Thomas in your Prayers, their Precious daughter Christi is having quite a bit of NB progression. Please Pray for Christi’s Miracle and if not for a cure, for the gift of time. CHRISTI'S PAGE

Please remember all our other friends who are battling cancer and other illness in your Prayers, especially Barb Cornell from Redwood Falls.

Thank you for your steady Love and Support

Love & Peace

Kelly


Saturday, July 23, 2005 5:36 AM CDT

Good morning to all our dear family and friends!!

A quick note to let you know we are doing Great, and we all had a Wonderful last weekend with all our events!!! The Relay For Life was very nice, and it was so heartwarming to see all the bags lit up with either Carl's name or picture on them!!! Many of the bags were decorated with "Angel" Carl. Sydney said she thought she saw Carl there? I am sure he was present, and so Happy to see all of his family together that night!! The dove release was very special, many people came up to us after and told us how Beautiful it really was :0) Saturday was Melissa & Justin's wedding shower. We were all tired, but it was a very nice Party at Uncle John & Auntie Sheila's!! Lots of Great food, and laughter!!! The Memorial Dedication at the zoo turned out wonderful too!!! It was so fun to see so many "Carl's Angel Wings" T-shirts that we all wore!!! It was nice to gather in Carl's Honor, and do something so special in his memory!! A very special THANK YOU!!! To all our family and friends that helped with the event, and had any part to make Carl's Memorial Dedication possible!!!

Today Tom and I will be heading to Rochester to join friends for the "Cruise" a 140 mile motorcycle ride to raise dollars for the Ronald McDonald House!!! We are very Excited, as Stacey & Kevin, and Shelley & Rod Erdman will be riding with us tomorrow!!! We also will get to see our dear friends Angie and Glen tonight, as they were in town for Dr.s appts this past week, and they are staying over longer to see all of us!!! It will be a Wonderful Reunion!!!

I will try to update again soon with many pictures from last weekend, and this weekend!!!

Please keep all of our friends battling cancer and other illness in your Powerful Prayers. And remember all of the Angel parents that miss thier children so much.

Thank you all and God Bless

Kelly


Monday, July 11, 2005 7:33 PM CDT

Hello to all our dear family and friends!!!

Wow here it is July 11th already, where does the summer go?

I realized the other day that the seventh month mark of Carl's passing had come and went. I think about him every day, and so much of every day, but I didn't think about that anniversary when it came that month. Soon it will be eight months since we saw our little guy... Oh how I am missing him so much right now. I just got done decorating some "Memory" bags for the upcoming Relay for Life on Friday night. I had all I could do to keep the tears from messing up the pictures I was putting on each bag. It is so hard to accept that Carl went from being on so many "Honor" bags (survivor) to now only "Memory" Through waves of sobs... I got the bags made, but I feel like all my emotions that were pooling inside me for all of these months have all spilled out over these bags. The weeks before last years Relay, and that week, and that night of the Realy are all so vivid in my mind... It seems like just yesterday, we were shopping for the boys little tent for the campsite, and preparing for that night that all the kids Loved so much. They enjoyed all the excitement, all the family together, staying up as late as possible, running around and acting silly, eating whatever they wanted, trying to outlast the adults, and usually could!!! I didn't know how strongly this would hit me right now. Carl I miss you baby... tears..

Our fourth of July party and Pig Roast was again a huge success!!! We all had lots of fun, and enjoyed many family and friends that spent the day with us!!! The highlight of my day, was our hayride. Once again Uncle Denny drove the tractor, with two hay racks connected behind. We think there must have been around 80 people between the two hay racks!!! We took a different route this time, we went out to Cty Rd 2, then we went over to the cemetery and made a trip through and by Carl's grave site with our Hay Ride!! I am sure he was not at the cemetery though, but sitting right there on one of those Hay Racks, smiling and giggling with everyone else :0) I am so Grateful that all of our family thinks of Carl so often, and misses him as much as we do. He is so much in all of our minds, and we all feel that same void, from that little guy that occupied so much room in our hearts.

This weekend will be very very busy, but will be handled in TRUE Robinson Style all the way!!!! Friday we will be doing the Redwood County Relay For Life. We are planning a Beautiful Dove Release as part of the Opening Ceremonies! Saturday will be Melissa and Justin's Bridal Shower at Uncle John & Auntie Sheila's!! Then on Sunday we will spend the afternoon at the Redwood Falls Ramsey Zoo for Carl's Memorial Dedication ~ Scheduled from 1:00 to 3:00 We hope to see many of our friends and community come out to help us celebrate this special event!!! We will be having games with prizes for the kids, Ice Cream Sundaes, Root beer floats, & Lemonade!!! All funds raised at the event will go to the Zoo for upkeep and improvements!!! Carl must be very proud of how many lives he has touched, and how his memory will live on....

Thank you for stopping by, and for all of your Love and Support that still goes on.... We don't know what we would do without all of you!!! Thank you for always being there for us and with us, and for feeling our pain too.

We Love You All!!!!

Love & Peace

Kelly


Monday, June 27, 2005 7:16 PM CDT

Good Evening this Monday!!!

Carl's Plaque for the Ramsey Zoo Memorial is here!!!

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The Plaque arrived on Friday, and Krista emailed Saturday so Excited about how Beautiful it looked, and she brought it out that afternoon!!! The words are kind of hard to read...It say's

Dedicated to the Memory of
Carl Thomas Robinson
12-28-99 to 11-26-04

Your life and love will still go on
In our hearts, in our minds
You'll stay with us for all of time

With Love from the Redwood Gazette

It is just Beautiful and so perfect!!! The plaque is done in bronze. It will be displayed in front of the cage at the zoo, and be added for the dedication scheduled for Sunday July 17th!!!

It was fun having Krista and her adorable little boys over on Saturday, they even brought two little cousins with, so we had the four little boys and Sam all around the same age running around the yard having fun together!!! It was so good to see busy little boys laughing and running around!!! Sydney gave them a ride in the wagon behind the lawn tractor, and just like old times, Daisy (the dog) jumped in and rode around with them...her head peeking out over the edge of the wagon, and ears flopping in the breeze :0)

We are looking forward to the dedication, and hope to see many of you there for this exciting event!!! We will be doing carnival games for the kids, a balloon release, a dove release (hopefully the doves will be ready by then) Lemonade, Ice cream sundaes, rootbeer floats, and much more!!! All proceeds will go to the Ramsey Zoo for Improvements!!!! We are so lucky to have such a Beautiful Zoo close to home to bring our kids, and enjoy!!! We really hope to help support all the Great work that is done down there to keep it running!!! Also start saving up pop tabs!!! We are doing a HUGE collection at the event, to go to the Rochester Ronald McDonald House!!! So start saving those tabs, and remember to bring them along to the Dedication!!!!

Dove news ~ I seem to be taking one step forward and two steps back. Their training has been ok, they have been homing from about 2 miles, and my last attempt was a 5 mile toss. I lost about six birds that try, but I am very pleased that the rest made it home!! That day was probably not the best choice of days for training, so I learned a valuable lesson in the process. It was Hot and way too windy that day. After I get back on track with a 5 mile toss in all directions..a couple times, we can move out to about 10 miles from there, and that will bring us pretty much to Redwood at that point!! I just need to learn to be patient with their progress, but it is so hard, because I am so anxious to get them started with funerals, and know that they can get home after!! The birds have been such a wonderful project, knowing that all this work will be so rewarding and be such a good feeling not only for me but for others very soon!!

3rd of July ~ Hog Roast/party ~

We would like to extend an Invitiation to All and Everyone that would like to join us for a Great Get-to-Gether!!! There will be Pork Sandwiches served, and a Pot Luck Buffet!!! Bring your lawn chairs, your beverages, and something for the Pot Luck!!! Once again we will Celebrate the Fourth of July in Style with a Spectacular Fireworks Show!!! Come for the food to visit with friends, and stay for the Fireworks!!!! It's Alot of Fun!!! Also for any out of town guests, we have lots of room for camping!!!

We are looking forward to a Great weekend and Get -together with family and friends!!!

As I close I would like to share with you an email we received from our dear niece Robyn. It was very touching and it was just what I needed the day I opened it.... Thank you Robyn for always thinking about us in Christ's Love.

Hi Tom and Kelly.

In my Bible Study, I came across some things that made me think of you guys. I wanted to share it with you.

Reading Genesis 21:1-21, it seems we see not only the compassion and sympathy of God, but also the empathy of God. He could relate to her pain and need, so He responded to Hagar as a loving God and as a fellow parent. We see the tender heart of God -- El Shaddai (nurturing parent).

God knows the intense pain of intense love. If you are a parent, you have already experienced fear, vulnerability, and pain. And the Father hasn't missed one second of your parenthood. If you have a child who is rejected by his peers, God knows how you feel. If you have a child who is not beautiful to look upon, He knows how you feel. If you have a child who has been betrayed by her friends, He knows how you feel. If you have a child who has begged you to "fix" something you could not fix, He knows how you feel. If you have a child who is suffering, He knows how you feel. If you have a child who is dying, He knows how you feel. If you have buried a child, He knows how you feel. He's been there too. However, there is one big difference. He could have changed every bit of it. But He didn't. For you and me.

If you're a hurting parent right now, allow God to open your eyes as He did Hagar's long ago. Let Him refresh you at the well of the Living Water. Like Hagar, your child may be totally restored to you. Or, like the trusting, but brokenhearted mother named Mary, you may have let your child go. God loved no mother on earth more than the one He chose for His Son. Yet she was unable to hold Him in her grasp for as long as she wished. You who are richly loved, do not give up. Once you've had a true glimpse of God's tender heart, you will begin to understand that if the Savior says "no" to a crying parent, it is because He's saying "yes" to eternal kingdom profit.

I hope this is encouragement to you. I know that things are still difficult -- but know that God loves you and so do we!
Love,
Robyn

God Bless you all

Love & Peace

Kelly


Sunday, June 19, 2005 8:04 PM CDT

Happy Fathers Day!!!!!

It has been hot and sunny, and the boys have been out all day baling hay. Tis the Season for Making Hay! We hope all the Fathers, Grandfathers, Uncles, Cousins and all the special men in our childrens lives have had a Wonderful Relaxing Fathers day!!!

Carl's Memorial Marker was placed at the cemetery on Thursday!! It looks very nice!!!

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We had a nice weekend here, the weather has been perfect!!! The kids have enjoyed spending time outside on their new water slide!! And our sweet niece Jenny was home for the weekend, so we got to spend some time with Jen and Jes!! We are starting to prepare for our Annual 3rd of July Hog Roast/Party and we would like to extend an Invitiation to All and Everyone that would like to join us for a Great Get-to-Gether!!! There will be Pork Sandwiches served, and a Pot Luck Buffet!!! Bring your lawn chairs, your beverages, and something for the Pot Luck!!! Once again we will Celebrate the Fourth of July in Style with a Spectacular Fireworks Show!!! Come for the food to visit with friends, and stay for the Fireworks!!!! It's Alot of Fun!!! Also for any out of town guests, we have lots of room for camping!!!

Thank you for checking in, and for all of your continued support!!! Please keep all of our friends battling cancer and other illness in your Awesome Prayers, and remember all of the Angel Parents that miss their children so much.

Love & Prayers

Kelly


Thursday, June 16, 2005 8:35 PM CDT

Good Evening this Thursday!!!

I will start out by asking all our dear family and friends for your Loving Prayers for our friend Virginia and her family. Carl's friend Jay earned his Angel wings yesterday. Jay was a wonderful young man that captured so many hearts along his journey with NB. Jay made thousands of friends, and enjoyed his life so much, just like Carl did. He never gave in, and kept his love for life right up to his last day!! Jay was always too busy having fun with his friends to be bothered with this cancer business, and he always kept active doing the things he Loved the most!! Jay will be missed dearly by so many friends everywhere!! We Love you Jay and Virginia, and we know Carl is busy showing Jay all around the place up there!!!

JAY'S PAGE

Our weekend of Lemonade Standing was Awesome!!! We held our Lemonade Stand on Saturday at Canterbury Downs, and then on Sunday at the Mall of America!!! Between the two days we raised $7000.00 for Alex's Lemonade Stand Fund!!!

Check out the many pictures of both days of our Event!!!

LEMONADE STAND 2005

We were so Happy to see some of our friends make the trip to the MOA on Sunday to see us and show their support!!! We got to see the Erdman's and Stacey from Camp Jornada!! We were surprised by other families from Rochester, and even friends from back home!!! It was so Great to see all of you there!!!!

We were also thrilled that Afleet Alex took First Place in the Belmont Stakes!!!! The Icing on the cake!!!!!

On Monday Tom and I and the kids made the trip to Roch to see our friends Deb and Andrew who are up from Virginia for Andrew's appointments this week!!! We couldn't let an opportunity pass us by, of seeing them when they are here in MN for a short time. The Erdman's also made the trip from the MOA to Roch, and spent some time with Deb and Andrew!!! It was so fun to see everyone there again, it was almost like old home week!!!! We got to see our favorite gals from the Donald House, and Helen even came by to join us for supper!!! We ordered a bunch of pizza's and put on a Pizza house supper!!! The kids all had a blast fooling around being goofballs together!!! They took the big house stuffed "Peef" and dressed him up with a duct tape thong :0) Boy can you just imagaine if Carl would have been in on their crazy stunts!!! He would have been laughing and running around like a maniac!!! I am sure he was watching over them and giggling just silly!!!

Please keep Carl's best buddy Andrew in your Prayers, as he completes his week of re-checks.

ANDREW'S PAGE

News on the Homefront!!!!

Carl and Sam's Heifer had her baby calf (a little heifer) on June 14th!!!! Auntie Jeanies Birthday!! Sam asked Auntie Jeannie if it was ok that he named the baby Jeanie :0) Hopefully she doesn't mind!!! The new little calf is very cute, and she is doing Great!!!

The Doves brought home a friend!!!

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A couple days ago, I noticed a dark bird flying with our group of birds??? Later I realized that this dark bird, was a coulored pigeon that had hooked up with our team and was flying along with them. This other pigeon actually trapped in the loft with our birds and made herself at home!!! I looked the pigeon over closely, and noticed it had two bands on it. One was her identification band, and the other was her racing band scanner recorder deal. Her band had Chicago on it??? I looked up the number on the Pigeon AU website, and narrowed it down to a racing club in Chicago. A little more research, and I found the guy the pigeon belonged to. He said the bird was released about three weeks ago. Somehow it got way off track and wound up a couple hundred miles north out of it's way :0( So anyway, we let the bird stay for a day to eat, drink, and rest, and this morning I drove her over towards Fairfax and let her go on her way!!! I had offered to mail her back to this guy, but he didn't want to do that. He said to just send her off, and he would keep in touch and let us know if she makes it home :0) There is always some Excitement here on the Robinson farm!!!

We have a very full and busy summer coming up!!!! It all starts with the Redwood County Relay for Life on Friday July 15th!! Carl's Commando's will be at it again, to raise dollars for the ACS to be directed to Pediatric Cancer Research!!!!

Mark your calendars for Sunday July 17th, we will have the Memorial Dedication for Carl at the Ramsey Zoo!!! There will be games for the kids, ice cream, lemonade, and more!!! All funds raised at the dedication event will go to benefit the Ramsey Zoo in Carl's Memory!!!

Then comes the Rochester Cruise!!! On July 24th!!! Tom and I are planning on joining in on the Cruise this year!!! We found out Stacey and her boyfriend will be doing the Cruise too, so we are even more excited!!!! I also heard our sweet friend Kala and her Dad are doing it again too!!! Wow this will be so Awesome!!! This is a 140 mile motorcycle run to raise dollars for the Rochester Ronald McDonald House!!! Last year the Cruise raised $60,000.00!!! Each year the bikes increase and so do the funds raised !!! It should be fun!!!!

Thank you all for stopping by, and being so patient while waiting for an update this week!!!! We had an Awesome weekend, and we did it all for the kids!!!! Everyone of them....the newly diagnosed kids, the kids still in treatment, the kids that are in remission, the kids that have lost thier battle here on earth, but who's battle was not in vain, because we are still "Fighting for a cure"!!!!

Here's a cute pic of Sam tonight at T-ball :0) These little boys are so cute!!!

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Love & Peace

Kelly


Tuesday, June 7, 2005 6:34 PM CDT

Good Evening this Tuesday!!!

First off, CONGRATULATIONS to Bryan and his team The Humboldt Hawks for taking the Minnesota State Adapted Softball Championship!!! The Hawks were undefeated going into the State Tournament on Saturday, and they came out NO. 1 as we all know they are!!!!!! GO BRYAN!!!!! We are all waiting for Bryan's own update on his Fantastic Win!!!!

We are nearing our HUGE Amazing Alex's Lemonade Stand Event "Minnesota Chapter" at the Mall of America on Sunday June 12th!!!! We are all very excited in anticipation of all the Fun that will be had by all!!!!!

I have a couple of news stories to share!!!

This first one is a story done in the Delta Sky magazine, June issue!!! It is in the seatbacks of all the Delta Aircraft for passengers to read!!! They even have a quote from Carl's Mom in the story :0)

DELTA SKY STORY

Here is another story Krista sent to me today about Afleet Alex and efforts to raise $$$$

AFLEET ALEX'S TRIUMPH AIDS CAMPAIGN

Here is another story I found!!!

FIGHTING PEDIATRIC CANCER ONE LEMONADE STAND AT A TIME"

We invite everyone to come out to the Mall of America on Sunday to take part in our Alex's Lemonde Stand Event!!!

Also we will be having our stand at Canterbury Downs on Saturday to coinside with the Belmont Stakes!!! If you watch the race on TV be sure to look for our stand it may be covered nationally??? It will be set up on the race track of Canterbury, and there will be a crew there to run the stand. Mary and Molly will be there for a few hours, and Tom and I may try to make an appearance too!!! This is a Huge addition to our Already Scheduled Lemonade Stand on Sunday at the Mall of America!!!!! We are Hoping and Praying for lots of $$$$$$ to help contribute to Alex's goal for 2005 of 5 million dollars!!!!!!

Zoo news!!!

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The Dedicatoin at the zoo for Carl's Memorial is unofficially set for Sunday July 17th!!! Krista is helping to plan this Event and it looks like it will be a fun filled date to mark on your calendars!!!!

If you visit the doves at the zoo and notice there are two more doves in the cage, that is because there is. We dediced the two doves (Sydney's 4H doves) did not seem to be getting along, and we questioned if they were a true pair? I checked with the guy I got them from in Ill. and he admitted he may have messed up putting them in the box because he was in a hurry??? So now we have them all back together (all 8 of them) and we will need to keep watching them to figure out who belongs to who, and then get Sydneys true mated pair back home for her 4H project!!

We are going to start loading up the trailer with Lemonade Stand supplies, so I will sign off for now!!!! If there is any Important Breaking news, I will update right away!!! Molly Hollway will be appearing on the Thursday Morning Kare 11 show, so you may want to try to catch that!!! I still don't know about Saurday Morning but I will keep you posted if any of us are on that program!!

Thanks for your continued Love and Support!!!!

Love & Hugs

Kelly


Monday, May 30, 2005 9:08 AM CDT

Happy Memorial Day to all!!!

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We have had a Beautiful weekend so far!!! No rain and some sunshine off and on. Today looks like the best day of all, as the sun is shining and the sky looks quite clear!!!

As you can see, Carl is adorned with many orange flowers!! Uncle Chuck brought him some orange balloons :0) He had a dozen but lost five in the process of getting them to the cemetery. He said it was if someone was pushing them out of his truck!!! Can't you just see Carl doing something like that!!!

On Saturday after church, we had a little picnic at the cemetery. Auntie Sheila made some fried chicken, and salad and we drank orange pop in Carl's honnor. It was so nice and very fun to spend some time there, as it is such a Beautiful cemetery, and the lawn is so pretty there!! The kids ran around, and played, and I could just picture Carl toting behind them with a big smile on his face!!!

We had a bon fire last night, and spent some time sitting outside here on the farm. The night was perfect for toasting marshmallows and sitting around a fire!!! The kids always Love when we have bon fires!! Sam was asking when the Fourth of July is :0) They are already looking forward to our Annual 4th of July (to be on the 3rd) Hog roast party, which is right around the corner!!!

Plans are coming together for our Minnesota Alex's Lemonade Stand to be held on June 12th at the Mall of America!!! We are so Excited, and anticipate this Event to be Huge with much success!!!

SILENT AUCTION ITEMS WANTED!!!! If anyone would like to donate anything to add to our Silent Auction at our Lemonade Stand, please contact us as soon as possible!!! We have an Autographed Baseball and Bat from the Minnesota Twins so far, and I am working on getting more Twins Items to add to our collection!!! Any type of Auction donation would be Greatly Appreciated from Anyone!!!!! THANKS!!!!

Zoo Doves Update!!! The doves at the zoo are doing great!!! They have settled in to their new cage and are enjoying themselves there!!! We have noticed one pair is using a nest box now, so they either are sitting on eggs, or they will be very soon!!! A Very Speicial Thank you to everyone that put time and effort in to making this Wonderful Memorial for Carl, possible!!!!

The doves at home are starting to "Get it" and are slowly learing what we want them to do!!! We are now working on getting them up and flying around the farm without sitting down in trees. This builds their strength and flying endurance! It can be quite challenging, since we have sooo many tall trees, that we can't keep them from landing in. We have been trying to stir things up outside, and create an atmosphere to discurage them from sitting down. This is done by hurling rocks at them without hitting them, and making loud noise to scare them up and flying. Each lesson seems to get better, so we think we may be on the right track!!! Last Monday we did our first Funeral Memorial Service. It was in the Morton Catholic Cemetery, so close to home and a good training session for the birds. Two doves made it home, we were very Happy about that!!! We have since heard that the Hennen's have seen a white dove over in one of their fields, so we are pretty sure it is one of our birds that didn't find it's way home? The little babies that I was trying to keep alive did not survive. One of the two was doing very well, and then one morning we found it gone :0( We still have a couple babies that the parents are taking good care of!!!

We would like to wish you all a Beautiful Day in the Lord!!! We appreciate all of your continual Love and Support, and Powerful Prayers that lift us up daily!!!

God Bless You All

Kelly & Tom
& Family


Sunday, May 22, 2005 8:58 AM CDT

Good Morning Dear family and friends!!!

The sun is shining, the birds are singing, it looks like we may have a Beautiful day!!!

Thursday evening we made the trip to Rochester for the "Camp Jornada" wine tasting/silent auction fund raiser!!! It was a fun event, we were so Happy to see Stacey, Farah, Lynn, our sweet little Megan, some of the other camp counselors & a couple of the nurses from Mayo!!! It was difficult for me to drive through Roch, past the Hospital and the Ronald McDonald house. As we were turning on to second street, the tears were welling up in my eyes, and it was all I could do to keep from crumbling...I didn't want to show up at the fundraiser looking like a mess. I guess it will always be that way. We spent so many days, weeks, and months, as we made so many trips to Rochester it just became a normal routine for us that felt so natural for so long.....Without Carl in the back seat asking "When are we there?" and anticipating him jumping out of the car to hustle into the Donald House to see his friends, felt so wrong. It was always such a joy to hear Paula's voice greeting Carl, and seeing everyone's smiling faces when they would see him bounching in. Tom and I remenisced about how Carl would make his rounds at the house visiting everybody :0) And many times pestering the girls in the office while they were trying to do serious work :0) But they were always so patient with him, and would humor him with each visit....even the 20th visit of the day :0) We have so many Happy memories of Rochester with Carl, and he too Always made the most of his time there....

Some Exciting News about our MN Chapter of "Alex's Lemonade Stand"!!! Thanks to all the hard efforts of our Co-Chair Mary Hollway, our group will be appearing on the Kare 11 Morning show on Saturday June 11th!!! She is also working hard on lining up other Media promotions to help us get the word out about our Stand at the Mall of America on June 12th!!! We have so many fun things lined up to add to our Event this year, it should prove to be HUGE for us here in Minnesota, and a Great Success!!! The Horse Afleet Alex took FIRST place yesterday in the Preakness race!!! WHAHOOOOOO!!!!! This means that a portion of the winnings will be donated to Alex's Lemonade Stand Fund!!! We are also very Excited that the Belmont Stakes will be running on June 11th!!! Perfect timing to tie in with all of the hundreds of Lemonade Stands that will be held around the country that weekend!!!! Carl was actually at the Belmont Stakes with Tom, and our dear NY cousin's Freddy & Patti two years ago!!! Carl randomly picked a horse to bet on, and he won $20.00 from that race!!! I have a picture here of him holding up his winnings, I will have to try to find it :0)!!!!

"Carl's Angel Wings" Memorial at the Ramsey Park Zoo was set up on Friday Afternoon!!! We brought down three mated pairs of doves, and added them to their cage!!! They look so pretty there, and seem to be adapting well to their new home for the summer!!! The cage is in a nice sunny location, so they will enjoy having the sweet sunshine to bask in each day!!! When we first put them in the cage, they kind of walked around and looked a bit confused. They are not used to living next to other bird species and hearing the different sounds. Their cage is inside the pen with the cute little goats :0) They are next to some Peacocks, and Turkeys. They will be hearing the Turkey's, Peacocks, Guineas, and other birds around them!!! I went down to check on them yesterday, and they looked very settled in, in fact one of the pairs was doing their thing right then like nobodys business :0) So we should be seeing them sitting on eggs very soon!!!

We are kind of in a tizzy with some of our birds here at home. Last Sunday...that nice day we opened up the trap and let them all come and go, three of our birds didn't come in that day. We saw the three flying about the yard on Monday night, but they still didn't come in??? Two of the three were the parents to the two fuzzy older white babies??? Then on Tuesday, the other bird came home (still not one of the parents)?? So I started to feed the two babies by hand to try to keep them alive. They were doing very well, and were very excited whenever I would come to feed them!!! One of the pair died yesterday, but the other little guy is doing Great, I think he will survive this ordeal!!! We are hoping for some dry, warm weather now to get some good training going!!!!

Thank you all for continuing to check in for updates, and for all of your guestbook entries!!! We Love to hear from you, and we appreciate your Prayers and Support Always!!! God Bless and have a Beautiful Day in the Lord!!

The people who have helped me are not those who have answered my confessions with advice, exhortation or doctrine, but rather those who have listened to me in silence, and then told me of their own personal life, their own difficulties and experiences. It is this give and take that makes the dialogue.
-Paul Tournier
The Meaning of Persons

Love & Peace

Kelly


Monday, May 16, 2005 7:58 PM CDT

Good Evening this Monday!!!

We enjoyed a Beautiful day yesterday at the Lucan Park for Captain Dan Days!!! Words cannot express the deep emotions we felt, as we all experienced the most Awesome Sign from God of Daniel's presence right before the balloon release. I was walking around handing out balloons, and managed to get all of my balloons tangled together, so I headed back to find someone to help cut them appart :0) Sarah and Tim Sullivan came to my rescue, and we got them cut and seperated once again!! Sydney came over to me and said "Look Mom there's an Eagle"!!! Eagles, have been the Ourada's sign for Daniel and this Eagle was too indeed a sign from thier beloved son that he was there and with us yesterday!!! It could not have happened any more perfect. If it were any sooner, possibly nobody would have noticed, and if it had happened a few minutes later...again, it may have been missed. I looked up and spotted the Eagle so high up in the sky. The sun was shining so Beautiful, and I caught a glimse of the Eagle flying across a white cloud, and it was so touching!!! Instantly, the tears began to flow, and as I looked around at the crowd, there were many others that were also in tears over this wonderful sight!!! This sign from GOD made our day....Everyone's day had perfect meaning. Thank You Laurie, and Terry for your all that you do to put on this Awesome Celebration Of Life...We are so Proud and Honnored to have been witness to such a Wonderful account of GOD'S Great Love!!!

Here is an email I received from Laurie tonight...Laurie describes the day so eloquently, and I couldn't have done better myself!!!!

***********************************************************
Dear Friends of Captain Dan,

“Life is not measured by the number of breaths we take,
but by the moments that take our breath away.”

The Ourada family would like to use some space and a few minutes of your time to commend our fine communities that we live in. This past weekend we held our 4th annual Captain Dan Fun Days at the Lucan City Park and had another fantastic turnout of support. It is unbelievable: the support, love, encouragement and team effort that is shown. The weather again was a challenge, cold, wet and windy, but in true Captain Dan Spirit, all teams showed up to play volleyball and softball and much fun was had by all… and then on Sunday the sun came out and warmed the air, it seemed as if everyone’s spirit was lifted… I could just imagine some of our loved ones up in the heavens trying to push those nasty clouds away, to allow for the sun to peek thru.

We had our favorite DJ Johnny J. Angelo from Glenco, back for his 4th year. He is one amazing man , he is very generous with his time and talent and we thank him for being here for us.

The Larry Mages Family Band played Christian, Country and Rock n Roll music on Sunday. An amazing family, we thank them for coming back again.

Special thanks to Todd and Sonia Johnson, Patty Erickson, Justin Bouwman, Shannon Kumpf, Andrea Ourada, Kathy Plaetz and family, Betsy Snyder, Lighterside Clowns, Trevor Schulte, Theresa Gervais, Petals and Balloons on Main, Sue Grunewald, Sheila Rubendall, Dale Mathiowetz, Jon Baune, Chad Altermatt, Brett Bartholomus, Kurt Pistulka, Dennis Plaetz, Tom & Kelly Robinson, John and Char Frank, Krista Daniels, Jeremy Waknitz, Tony Knott, Andy and Jackie Ourada and twins and all the young people that helped with inflating balloons and working the carnival and there were countless others that kept the concession stand, Dominic’s Kool Aid Stand, Captain Dan’s Grill and the Lucan Lion’s Beer Wagon running smoothly… it takes much organizing and planning to make all this happen. But more than anyone I want to thank my family for all their patience and love, many hours are put into this event and every now and again I will wonder if it is all worth it to do it again, but then the thing that I most look forward to each year happens……….and that is the balloon release, it was especially meaningfull this year, because we included the Dove Release by the Carl Robinson family and a special poem read by Lt. Andrea Ourada in tribute to all fallen American Soldiers.

Just as the balloon release was about to begin there was another of God’s miracles present with us…..high above the park an Eagle was seen, it was soaring high above the clouds and appeared to be circling, it was a sign of God’s Love and Daniel’s presence with us……..it was very comforting and gave us all a sense a peace and for just a moment I felt like my family circle was again complete with all 5 children present…..it is in moments like that , that I ask “How can we not believe”? God’s Love is ever present.

During the balloon release I took a few tearful peeks around and saw so many people just embacing and gazing towards the heavens, several were holding children that were sobbing for the loss of a special loved one. Some were standing alone, head bowed, shoulders shaking, looking so very alone. Some were smiling and laughing at the way the balloons dance towards the heavens. Some were trying to figure out why their balloon got tangled in the tree branches, (maybe they wanted to stay and play just “One More Day”, it was witnessed that one balloon got tangled in the branches and with much prompting from friends it was sent on its way to heaven. Many balloons had notes attached as a way of sending love to heaven… It is a very personal, emotional moment to experience. Each of us expresses our grief in our own way, some hold it in, some reach out to others, some say it is too hard to talk about or that we just need to move on and forget about it. And then some of us are very open with our emotions and want to share and help others. “Grief is not a sign of weakness, nor a lack of faith, it is the price of Love.”

Each year after the balloon release I am impressed by the hearts that we touch, what most touches my heart and inspires me to continue our Captain Dan Fun Days is when a father approaches me with open arms and with a tight embrace says, “Thank You” and without another word he speaks volumes as he slowly walks away with tears in his eyes and a memory so very deeply etched in his heart of a child lost so long ago. That is why we do Captain Dan Fun Days…………no other reason. It is not a day of sadness, but of remembrance. It is my “Celebration of Life “ weekend and my family and I are proud to have so very many of our family and friends be a part of it………

There are just no words to express the Carl’s Angel Wings Tribute, the Robinson family is doing an amazing tribute to an amazing young son of 4 years. We were touched to be asked to be a part of their 1st dove release at Captain Dan Fun Days, they chose Dominic, Sydney, and Tony to release doves as a sign of releasing loved ones spirits to the heavens, and as the song “You Raise Me Up” by Josh Groban was played the beautiful white doves circled us and then flew off together, it was an awesome witness to God’s Love….

We are continuing to put the proceeds into the Captain Dan Park fund, and will continue to do so until the fund is at the $40,000 mark approximately. We have some fun ideas that we would like to add to the park, but as you know it takes time to build a fund up to that amount…at the current time there is $ 7,550 in our Captain Dan Park Account, all bills are not in at the time of this printing, so the amount raised at the 4th annual Captain Dan days is not known at this time. But I assure you that when we reach our goal there will be some awesome things happening at our Hometown park…

Thank you for attending or supporting our event, we look forward to seeing you next year, May 20th -21st in Lucan for the 5th Captain Dan Diehard Tourney, (the weather is just not gona affect our weekend fun)

Sincerely ,

Captain Dan’s Dream Team

Laurie and Terry Ourada

Raffle
Eagle print donated by John and Char Frank won by Alex Ourada from Mankato

4 Twins tickets donated by Krista Daniels/Wabasso Standard won by Robinson Family from Franklin

Caringbrige donation

$250

Cow chip contest
$400 Greg Janachovsky from Crookston

$25 Johnny J. Angelo from Glenco

$25 Sydney Robinson from Franklin

$25 David Ourada from Lucan

$25 Ray Thull from Lucan

Softball Tourney
2-0 bracket

1st Salfers Food Center

2nd Mayberry

3rd Wanda Country Steak and Drink

1-1 bracket

Skoblik’s



0-2 bracket

D and G Contracting

Bean Bag Tourney
1st Dan Mathiowetz and Chad Altermatt

2nd Fatty and Jesse Remiger

3rd Lurpy and Spanky

Volleyball Tourney A team
1st The Aces

2nd THEE Volleyball Team

3rd Jansen Dairy

Volleyball Tourney B team

1st Whatever

1st Wrencher there was a tie for 1st between those two teams

2nd Peaches
***********************************************************

News from the Zoo ~ The cage is in place at the zoo, we are hoping to get the doves moved there and set up by Friday this week!!!

Dove News ~ Two more babies, now a total of 6 ugly little doves :0) The two oldest babies are starting to look fuzzy white, they are almost cute :0) We were able to let the doves out all day yesterday since the weather was so nice!!! All have came back but three??? Not sure what they are up to, we see them fly by every once in awhile together, I think they just Love to be out flying!!!

Thank you all for checking in and for keeping our family lifted in your Powerful Prayers!!!

Love & Peace

Kelly


Thursday, May 12, 2005 9:26 PM CDT

JUST BECAUSE...
Just because I no longer stand in front
of your eyes,
doesn't mean you can't see me.
Close them.
I am there.
Just because I no longer
answer when you call my name,
doesn't mean you can't hear me,
speak softly, listen carefully,
there is my voice.
Just because I can no longer
touch your hands,
doesn't mean you can't feel me.
Hold on to another
my arms are there.
Just because I am no longer there to show you I love you,
doesn't mean my love is gone.
Place your hand on your heart,
feel its beat,
I am there.

Know that I am with God.

Know that God is with you.

And in that we are still with eachother...
Just because....


Good Evening this Thursday!!!! Wishes to you all for a HAPPY FRIDAY tomorrow!!!!!

Here are some pics I took tonight of the baby doves ~

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Image hosted by TinyPic.com

We noticed another baby has hatched in another nest!! It should have it's little clutch mate by tomorrow!! We have not let the birds out for about a week now, with this rotten weather we keep having!!! It sounds like it may clear up some this weekend!! We are planning a full day at Captain Dan Days in Lucan on Sunday. We will be helping with the food stand, and the kids will help with the Kool-aid stand!! The dove release will take place about 1:00pm. Thank You to Jeremy for letting us use three of his white doves for the Ceremony Sunday!!! Our birds are not ready to fly home from that far, but Jeremy's should be able to get back home easily from the park which is about 7 miles. It will be a bitter sweet day, as we remember our Angel Carl, that spent last year with us at Captain Dan Days. The above Zeocast has some picutures from last years Celebration. He was toting around an Orange balloon :0) We miss our little guy so much. We have so many memories that keep surfacing every day. I will say to Tom or the kids, Remember when Carl used to say ..... we smile to remember, but then try not to cry. I have been doing pretty well, but some days you just can't stop the river of tears, it is just too hard.

Our sweet niece Mandi had a wonderful dream about Carl last week!!! As I read her email, I was once again in tears, but they were very Happy tears!!! Mandi said that Carl came over to thier house and asked to play!!! She said that Carl looked so good (he had hair too) and he was being so funny and silly, and they were laughing at him so hard!!! Which sounds just like Carl :0) I believe this was one of his little ways of communicating to us that he is Happy, and well!!!! Mandi said it seemed sooo real...I do believe he was giving us a message through Mandi!!!

Wishes to you all for a HAPPY FRIDAY!!!! And a Wonderful Weekend!!! I hope you all have Beautiful weather where ever you may be!!!! We are certainly Praying for warmth and sunshine here so we can get those birds back outside for more training!!!!

Love & Peace

Kelly


Saturday, May 7, 2005 9:02 PM CDT


Hello this Mothers Day Evening!!! We Hope all of you had a Nice Mothers Day!!! Not only Mothers, but Grandmothers, Aunties, Cousins, and dear friends that have touched our childrens Lives and Hearts!!!!

We are getting ready to move the cage to the zoo!!! Today we got a crew over to Deans to help lift it up on a trailer. Here are a few pics of our Awesome finished cage!!!!

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Notice Sam locking his Father in the cage :0)

We had a very nice Mothers Day!!! We visited my parents last evening, and made pizza's for supper!!! The kids played ball outside and Sam was having so much fun he didn't even come in to eat!! But of course when it was time to go home, he realized he was hungry!!!

Today we spent some time with Grandpa & Grandma Robinson at Garnet Gardens. Grandpa moved in to this wonderful Assisted living home a week ago. We are all hoping Grandma is able to join him there very soon!! She has been trying hard to feel better, and get around easier!!! We enjoyed Hamburgers and Hotdogs on the grill!!! We even got to hold those precious baby twins :0) They are getting so big, and so bubbly cute!!!

Have a Great Evening everyone!!! Thanks to all of you for your Mothers Day Wishes!!! We had a nice day, and we all have noticed the bumper crop of dandelions this Mothers Day!!!!! And the funny thing is, that they seemed to just pop up the last couple of days!!! Our yard is smiling with Mommy Flowers that we are sure Carl sent himself.... in Multitude!!!!

Love & Peace
Kelly

************************************************************

Good Evening this Saturday Night.

I found a Beautiful Poem to share, it is dedicated to all grieving Mothers that lost a child and miss them so desperately. God Bless the grieving Mothers and May your memories of your Precious Angle bring you peace and hope, as the days, weeks, and months go by. May you find comfort in knowing that you will once again be reunited with your Angel one Glorious Day!!!!!



GOD BLESS THE GRIEVING MOTHER ~

CLICK HERE


Here is another Beautiful Poem I found called ~

DANDELIONS FROM HEAVEN ~

CLICK HERE


Love and Peace

Kelly


Sunday, May 1, 2005 9:32 PM CDT


Monday evening update!!!

We banded the little babies tonight. They have to be banded when they are about 5 days old. The bands slip over their foot, and if you are a day too early, it can slip back off, or if you are a day too late, you may not get the band on, as these babies grow so rapidly!! Here's a couple pics :0)

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Image hosted by TinyPic.com

Have a Great Evening Everyone!!!!

***********************************************************




Good Evening this Sunday “Mayday” :0)

With Mayday comes flowers, and with flowers comes “Mommy Flowers. It sure does not feel like May here in Minnesota, it feels like we are still stuck in November. We are soooo anxious for warm sunny weather once again!!!

We have some sad news to report, two more children have lost their battle to Neuroblastoma this past week. Precious little Lexy that Carl played with last year in Chicago at the NB conference. And Mason from Iowa. They both suffered from liver involvement much the way Carl and Sophia ended their battle. It is so sad and very difficult to almost relive what Carl experienced, as we followed these children and Prayed for these two warriors to survive. It seems that they both were spared a lot of pain and suffering, as they were called home very quickly too. Please keep these two families in your Prayers.

www.caringbridge.org/asia/masondbrown/

www.caringbridge.org/tx/alexiaflory

We are busily training the doves to use their trap door, and we expect to remove the fly-pen in a couple of days to let them soar outside. We banded all of the birds to distinguish between the first group and second, then we put them together. The first group is more advanced in training, and will hopefully help to lead these younger birds along. Tom and I noticed a couple of days ago that one of the Mom’s sitting on a nest has two little babies sticking their heads out of the nest :0) We were shocked and very surprised, as we have been told that the first eggs often do not hatch. There are two other birds sitting on eggs, so we may have a few more babies soon to follow!! We are hoping for a nice weather week to be able to get the doves out every day for practice!!

I added a photo of a poster for Captain Dan Days which will be taking place this year ~ May 14th and 15th in the Lucan City Park!! This event is to continue to raise money for the Lucan City Park Fund!! This event is in memory of Daniel Ourada, son of Terry and Laurie Ourada. We will be doing a dove release on Sunday at approximately 1:00pm in memory of Love ones and a tribute to all American Soldiers. Other activities planned will be Softball & Volleyball Tournaments, Domicic’s Kool-Aid Stand, proceeds will go to Caringbridge on Behalf of friends ~ John Frank, Carl Robinson, Lincoln & Austin Ourada. It is a Wonderful Event, and we would Love to see anyone that can make it come out for a fun filled weekend at the Lucan City Park!!

Thank you to everyone for all of your continued support!!! We so appreciate all of you checking in with us, and for all of your Awesome Prayers lifting us up so High!!! We are excited for Carl’s Memorial Project, and we look forward to sharing all of our progress as we move forward to bring our dream alive!! Thank you from the bottom of our hearts for keeping Carl’s family in your thoughts and Prayers as you so faithfully do!!!

God Bless you all

One morning as I sipped a cup of coffee while I was
On the phone talking with an editor in New York, I
Looked out the picture window and saw a baby deer
Walk gingerly by, sniffing at the pink geraniums. It
Paused, framed against the pink granite dome of the
Capitol of Texas in the distance. Here it was, God’s
World and my new world laid out before my eyes.
“I’ll have to call you back,” I hastily told the editor.
“I’ve got to take this in.”
And I sat there for five full minutes gazing at the
Wonder of it all, reflecting that I had just learned how to
Move from loneliness to solitude. There is a vast difference.
-Liz Carpenter ~ In Seven Choices: Taking the Steps to New
Life after losing someone you Love, by Elizabeth Harper Neeld

Love & Peace Always

Kelly


Sunday, April 24, 2005 2:29 PM CDT

Hello this Beautiful Sunday afternoon!!!

Happy 13th Birthday to Sarah Robinson AKA Rah Rah :0)

The above picture is of our NY cousin Keith Hauck with Jay and Liz Scott and their three boys!!! The Scotts were at a fundraiser a couple days ago, where Keith is a chef at the Garden City Hotel!! They were serving a drink especially created for Alex Scott, and they raised $5000.00 for Alex’s Lemonade Stand!!! I am sure this was a very Exciting Event, and we are so Happy Keith was able to meet the Scotts that night!!! Tom and Carl met Liz and their littlest guy in Philly at the Hospital when they were there in November for Carl’s MIBG treatment!! Tom was very thrilled and proud to have met them too!!!

I will keep you all posted as we get closer to our BIG Minnesota “Alex’s Lemonade Stand” Which is scheduled for Sunday June 12th at the MALL OF AMERICA!!! Our co-chair Mary Hollway has been very busy working with the Mall to get things all arranged for us to be there!!! We are setting up by the Sam Goody Court ~ which has a stage!!! Mary’s daughter and NB survivor Molly will be performing with her danceline as one of the attractions we have planned for the day!!! We are expecting this day to be a wonderful success, and we plan on much media coverage prior to the Event to get the word out about our Exciting Day!!!

The doves are steadily learning!!! We have started working with our new batch of birds, and today they finally got a glimpse of the great outdoors, as we hung the Fly-Pen around the trap door again to start getting them accustomed to going out and back in the trap! We have had a couple of setbacks with the rainy/windy weather the past couple of weeks, and we lost a few more birds that didn’t return home from our first group of birds (possibly due to hawks). I also have been learning more and more about this process of training and keeping these birds! Just when I think I know what I am doing, I figure something else out, or learn what I am doing wrong. I had the pleasure of talking with a fellow pigeon fancier, Jeremy W. from Wabasso!!! I was so Happy he called one night to talk about pigeons!!! He found out about our dove project, and wanted to offer any assistance or advice we need!! Jeremy has been raising and racing pigeons for many years, and I am thrilled to now have someone close by that I can call on for “Help” I have already put some of his valuable advice to work with feeding the doves, and they are responding just the way they should!!! Being the Mom that I am, complete with the natural urge to “feed” all creatures to excess, I have been overfeeding the birds, and leaving them with little motivation to work. After cutting back on their feed, and getting them on a stricter schedule, I think they are responding nicely, and when they do get outside to fly, they will be ready to return to their loft to get fed!!! Jeremy is very grateful to help us out and we are very grateful to be offered his gift of knowledge!!!

Another Dove project in the works, is the “Carl’s Angel Wings” memorial to be added to the Ramsey Park Zoo very soon!!! Krista Daniels with the Redwood Gazette wanted to dedicate a Memorial in Carl’s Honnor somewhere in Redwood Falls, complete with a plaque! A Dove Exhibit at the zoo, was what we decided on, since we are starting our “Carl’s Angel Wings” project, and the fact that Carl Loved Animals, especially birds very much, and we are sure Carl would agree on our decision for the zoo!!! So Tom, has been assisted by Uncle Denny, and Uncle John, and Dean Woitaszewski in building a cage that will house a couple of dove breeding pairs for Carl’s memorial at the zoo!! This cage is so Awesome!!!! It is more than anything I could have imagined would be built!!! We are not sure when the memorial will be set up, but we are sure it will be sometime soon and for sure before Memorial Day!!! Krista would like to see a dedication or ribbon cutting ceremony for Carl’s Memorial sometime this summer!!! We have talked a little bit about having a special day to invite the community to the park and zoo, and see the new Exhibit!!! We also thought it would be fun to include games and other activities at the Event!!! We will keep you posted on the expected opening of the “Carl’s Angel Wings” Memorial at the Ramsey Zoo!!! A very special THANK YOU to Krista and Paul H from the zoo, and uncles Denny & John, and to Dean for all of your hard work and many, many long hours of design, building, welding, painting, of this Beautiful Cage!!!! It is so very Awesome!!!!!

Bryan was confirmed last Tuesday night at the Cathedral in St. Paul!!! It was a Beautiful Service, and we were so Proud of Bryan that night!!! It was a Special day as our new Pope Benedict was elected that very same day. Bryan chose for his sponsor, his cousin Kevin Creamer!! It was so good to see some of Bryan’s relatives that were with us that night at the service!! We all went out to supper after the Mass, and enjoyed a Wonderful Italian meal served family style!!! Bryan’s priest Father Adrian, and Emily, Bryan’s girlfriend also joined us for supper!! I posted a picture of some of us at the Cathedral on Bryan’s home page of his website if anyone would like to check it out. Link Above

We continue to miss Carl so terribly. It will soon be five months since he left us for heaven on the 26th of November. It is hard to believe it has been this long, it just does not seem possible. He is ever so present in our hearts and minds, and souls. Sydney has been blessed with the gift of dreaming about Carl, and she usually can remember and tell us a story when she wakes up!!! I think her mind is less cluttered than ours, and she is more open to his messages. I have dreamt of Carl, as I know he was in dreams I have had, but things seem so jumbled, and hard to deceiver. Sydney had a dream last week that Carl was allowed to come back to earth to play with her. She said that nobody else could see him but her. They were playing together, and she said they were playing down by where the bird loft now is. She said that the loft was not there though, only sand. They were digging with spoons and uncovered a treasure chest. Just about this time, I woke Sydney up for school, and she came out of her dream :0( I later thought about Sydney’s dream and wondered if the meaning was about a “treasure” and that they were playing where the bird loft sits? Maybe a message, that “Carl’s Angel Wings will be a treasure for all of us??

Before I close, I have to share with you a very special meeting this morning. We had a visiting Priest at church today! When we walked in and sat down, I felt something surround me like a presence of some sort? I even wondered if Carl were sitting there with us :0) And I do believe he probably was….I felt some sort of energy in the air as we sat and waited for Mass to begin. I soon figured out what I was feeling, as this visiting Priest got up on the Alter and introduced himself to the congregation. It was Father Bonnen (sp?) The priest that was Father at my parents church in Dawson Minn, about 40 some years ago. He was the priest that actually baptized me when I was a baby!! I knew that this priest would fill in at some of the local parishes on occasion, but I have never had the opportunity to meet him until this morning!! It was so fun to see his face and smile when I told him that he baptized me 42 years ago!! How neat to meet him today!!!

Have a Great week everyone we Thank you Always for keeping us in your Strong Prayers and still keeping us close to your hearts. Carl did an amazing job of connecting so many wonderful people and putting all of you into our lives!!! We are Blessed!!!

Life is made up, not of
Great sacrifices or duties,
But of little things, in which
Smiles and kindness and
Small obligations, given
Habitually, are what win
And preserve the heart.

Sir Humphrey Davy

P.S. The Mommy Flowers are starting to pop up :0)

Love & Peace

Kelly


Thursday, April 7, 2005 2:18 PM CDT

Good Afternoon this Thursday!!!

New Pics to view :0) Click link above ~ 50's party!!!!!

As you can see, we had a Wonderful time at Uncle Chuck's Birthday Party!!!!! We dressed up, and did the 50's theme, even little baby twins Kody & Kaylee were there!!! We all enjoyed ourselves, and it was so good to get away for a couple of days!!!

The above picture of Sam and the doves was taken last night. We are starting to train the birds by releasing them away from home. We start by "Basketing" them, then taking them to a certain location (down the driveway last night) then letting them go! They were not sure what to do at first, but soon took off and soared off, and circled the area many times :0) They look so Beautiful flying up in the sky, it is very rewarding getting to this stage, and we are so Excited to keep moving on their training!!! We plan to go to the back side of the grove tonight, and let them loose there, and with luck we will be on the road to turning them loose away from our farm!!! We stopped in Alden on our way home Sunday and brought home 24 more white doves to add to our collection!!! They will be moved to the loft by this weekend hopefully, as we have to finish thier pen and get them set up with the other birds!!! The Momma that laid the eggs (2) is still sitting on them!! Another bird is sitting on eggs now too!!! Actually how this works is the couple take turns sitting on the eggs, so the hen sits for part of the day, then the cock will take his turn to give the hen a break. They both play a part in raising their young, beginning with feeding them "crop milk" when they are first hatched!! Both parents take equally care of their young!!! We are learning quite a bit, and enjoying our project as we go along!!! If the weather continues to be as Beautiful as it has, we should get the first group trained pretty well within a couple of weeks!!! We will start training the second group soon too, by starting to let them out of the trap, confining them to the "fly-pen" and then taking that away a week or two later. So we will be keeping ourselves pretty busy with the birds from here on out!!!!!

The kids are all doing well, they are getting anxious with this warmer weather for summer to arrive!!! Sam has been busy on his dirt bike making tracks around the yard :0) We are thinking between our "Hybrid" Mommy flowers that we seem to keep, and Sams tracks around the place, we should have quite an attractive looking yard this summer!!!! I often wonder if Sam thinks about all of the things he and Carl used to do together, and if he misses him as much as I miss seeing them playing together? It is so strange how things are so very different now.......

We are starting to make plans for our Alex's Lemonade Stand to be held Sunday June 12th at the Mall of America!!!! Mark your calendars, and if at all possible, we would love to see whoever can make it, visit our stand!!! We will be getting the Minnesota Twins Mascot TC to make an appearance this year, and we have many TWINS items for a silent auction!!! We will be joined this year by two Minnesota NB families, the Hollways and the Hammers!!! Molly and Daniel are both Survivors!!!! Molly's dance line will be doing a performance as well, so we are busy lining up lots of fun activities to accompany our Lemonade Stand this year!!!! If anyone has any ideas or suggestions to offer, please feel free to email me privately!!! We welcome all ideas, and support we can get from anywhere!!!!!!!! We are looking forward to a fun filled successful Event, and hope to see you all there!!!!

Thank you for stopping by today, and for keeping us lifted in Prayer, it is only with all of your Love and Support that we find the strength to carry on!!!

The Sun Is Always Shining

It's often easy to forget,
on dark and cloudy days,
That the sun is always shining
though we may not feel its rays.
We often think we're limited
to what our eyes can see,
Forgetting that there's so much more
to our reality.
But through faith we reach a higher plane,
with hope we carry on,
Confindent the night will pass
and soon we'll see the dawn.....

For the sun
is always shining
just above the cloudy haze,
And in our hearts
we know that soon
its warmth will fill
our days.

Emily Matthews

Please continue to Pray for all our friends battling cancer, and other illness, and for all of the Angel Parents that miss thier children so desperately.

Love & Peace

Kelly


Monday, March 28, 2005 4:23 PM CST

Good Evening this Monday!!!!

We hope you all had a Wodnerful Easter Holiday Weekend!!!

Ours was very nice, we enjoyed family and friends that came to dinner, and had a very fun weekend!!!

Our dear friend Laurie Ourada stopped over on Saturday and brought us two balloons to release! One blue one for her son Daniel, and the other balloon, Orange for Carl!!!

After Church on Sunday, we stopped by the cemetery to release the balloons to heaven!!! On the count of three, Brayn and Sam each released their balloon. Just as the balloons started to drift above the trees into the sky, we were delighted by the occurance of three Canadian Honkers flying by just about the same time, and over the cemetery. Tom thought they were pretty close, and it almost looked like the balloons and birds were about to collide :0) We believe this was a sign from Carl!!! He always Loved feeding the Honkers at Silver Lake, and we have many stories about dodging "bird cap" in that park :0) It is not strange that Carl chose Canadian Honkers to send by as a sign, that was more than fitting!!!

Carl Loved birds and he even enjoyed feeding some (flamingos I think) with Dad and Freddy & Patti on his trip to Philadelphia, when they visited the zoo :0) Only Carl was feeding them skittles, not bread :0) Tom laughs as he tells the story about Carl feeding skittles, he said that Patti told Carl he was going to give those birds Diabetes :0) Carl's doves are doing good using their trap door!!! We have not done a real realease from too far away from the loft yet, they are still getting used to going out, and exploring a little, then coming back in all on their own!! They even go right out now when I open their door, and they fly out and seem to enjoy getting outside!!! Today I noticed one of the hens sitting on a nesting bowl, (yesterday we noticed straw in it) and she has an egg under her :0) I'm not sure if there are two, usually they lay two eggs at at time, but I only saw one? I guess with spring in the air, the birds are getting a little frisky, but that is what we need to keep our bird population growing!!! So this egg is a real Easter Egg!!!

Sydney is enjoying her time with her Dad in Texas, and will be coming back home tomorrow!! Sam is excited to get her back home, he got a new (used) dirt bike over the weekend from Cousin Jackies new store!!! It is just Sams size and he is having a ball riding around the farm on it!! Sam and Kate took turns all day yesterday, one riding the go-cart, and the other riding the dirt bike!!! Needless to say Sam was out and sleeping by 6:00pm last night after all of our company went home. We are all excited to get back together with all our family, and those we have not seen in awhile this coming weekend. We are celebrating Uncle Chuck's Birthday at the Raintree Hotel in the Wisconsin Dells!!! We have lots of fun activities planned to give Chuck a Brithday Party he will never forget!!! We are doing a Back to the 50's theme, and all dressing up with proper atire!!!

I know Carl would have been so darn cute in little rolled up blue jeans, and a white t-shirt, and slicked back hair!! Well if he had hair? Well yes of course he would have hair, if I am dreaming....he has a full head of hair!!! And don't forget the paste on mutton chops :0) Ooops I bet I wasn't supposed to post that...ssshhhhhhh

Anyway the whole Robinson clan is getting geared up for a family fun get-together weekend!!!!

HAPPY -0TH BIRTHDAY UNCLE CHUCK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Thank you for continuing to stop by and visit Carl's site, we enjoy that you still want to keep in touch, and it helps us feel like Carl is still so very much with us, as he definitely is, and we can feel his presence each day!!!

Please keep all our dear friends also battling cancer and other illness in your Powerful Prayers, and remember all of the other Angel Parents that miss their children so much!!

Please keep the Prayers coming for our friend John Hogan who is healing from an accident. He could use some of your Powerful Healing Prayers for a speedy recovery!!!

Sunset Observed

Have you ever stood silent
Before the night fall
Facing the west
Hearing birds call?

No matter your location
it is always there
Right at the tree line
For you to share

No need for investment
in travel afar
To witness God's beauty~
He's given us stars!

An evening adventure
To witness the sun
Setting at dusk
On the horizon

They change with the seasons,
Locations, and colors...
With deep orange and blue
Unlike any other

Clouds add dimension.
Rain blocks it out.
Yet, it's there every evening
Without a doubt!

A perfect dessert
To end every day...
You've only to look,
To thank God, and pray.

Leslie Droll


Love & Peace

Kelly


Thursday, March 24, 2005 11:45 PM CST

Good Evening this Thursday to all our dear family and friends!!!

Thank you everyone for stopping by, and all of your Great notes of encouragement and Love that you leave us!! Thank you too for the emails and phone calls, I hope to catch back up with you all soon!!!

We are busily getting ready for Easter!!! We will be having dinner at our home this year, and we are very Excited to see everyone that is coming!!! We are anticipating a Beautiful weather day on Sunday!!!

To all of you that will not be here with us, and to everyone everywhere, we wish you all a most Blessed Easter Holiday and Wonderful Weekend!!!!!

The doves are doing just what they are supposed to, they have learned to use their trap door and come back in the loft just like we want them to!!! Tomorrow we plan to take down the fly pen, and let them out again "free" for the first time, and Pray they return the way they now know how to!! Then if all goes well, we plan to do our first release away from the building. I was thinking just part of the way down the driveway, then they will still be able to spot thier loft, and hopefully fly back to it!! If all goes well, then we will be able to start taking them out further to release them!!! We really hope to get them started working very soon, as we are so Anxious to get "Carl's Angel Wings" off the ground :0)

Sydney is spending her Easter break in Texas with her Dad, and Bryan will be here with us for the weekend!! Sam is all excited for coloring eggs at Grandma's and to do the Annual Easter Egg Hunt in the park on Saturday!!! It will not be the same without Carl, as the two of them enjoyed Easter and all of the frills so very much together. We recieved an email from our sweet little niece Kate the other day :0) I wanted to share something she said that was so very precious!!! ~

I cannot wait 'til Easter but then I can wait. The reason why I can wait is because my bestest cousin is not going to be there & the reason why I can't is because I love cloring easter eggs

Thanks Kate for your nice email, and for sharing your feelings about Easter and missing Carl. We will all miss Carl, and it will just never be the same without his high energy, and excitement to share with him. We will always hold all of those special memories of Easter spent with Carl, very close to our hearts, as we Celebrate the resurection of our Savior, and know that Carl is Happily spending Easter together with our Lord! I am sure he is busy up there with all of his friends coloring the most beautiful eggs imaginable!!! I can only imagine all of the orange eggs Carl will have sitting around drying :0)

Thank you for your continued support, and for all of your Prayers that give us strength each day!!!

Please remember all of our friends battling cancer and other illness in your Prayers. Please keep John Hogan in your Prayers as he is healing from an accident that happened a couple of weeks ago.

God Blessings to you all this Holy Easter Weekend!!!

Love & Prayers

Kelly & Tom
Bryan, Sydney
Sam & Angel Carl


Tuesday, March 8, 2005 9:39 PM CST


Wednesday evening!!!!!!!!!!!

FANTASTIC NEWS!!!!!!!!!!!!!!!

We got the OK to do our Lemonade Stand at the ~ MALL OF AMERICA!!!!!!!!!!!!!!!

Thank you Mary for all of your help getting this approved!!!!!!!!!!!!!

We Love you all!!!!!!!!

**************************************************************




Tues Evening ~ Thanks Ann for sending this....You made me cry

Ask my Mom how she is
My Mom, She tells a lot of lies
She never did before.
From now until she dies,
She'll tell a whole lot more.
Ask my Mom how she is
And because she can't explain,
She will tell a little lie
Because she can't describe the pain.
Ask my Mom how she is,
She'll say"I'm alright".
If that's the truth,then tell me,
why does she cry each night?
Ask my Mom How she is,
She seems to cope so well.
She didn't have a choice you see
nor the strength to yell.
Ask my Mom how she is,
"I'm fine,I'm well, I'm coping".
For Gods sake Mom, just tell the truth
just say your heart is broken.
She'll love me all her life,
I loved her all of mine.
But if you ask her how she is,
She'll lie and say she's fine.
I am Here in Heaven.
I cannot hug from here.
If she lies to you don't listen,
Hug her and hold her near.
On the day We meet again,
We'll smile and I'll be bold.
I'll say,"You're lucky to get in here, MOM
With all the lies you told!"

-Unknown

*************************************************************

Good Evening this Monday!!!

I wanted to share some Exciting News on Alex's Lemonade Stand, from Jay and Liz Scott!!! In an emial, the Scotts, tell how Alex's fund is helping to fund different Research Positions!!!

~ Alex's Lemonade Stand recently funded a Clinical Research Coordinator position for NANT. This is a position that has been in place for some time, but funding for the position was cut for this year.

It would be great if someone could figure out, who we, as parents, could most effectively complain to about this lack of funding

As many people on this list have supported Alex's Lemonade Stand, we wanted to make you aware of some of the projects that have been funded with lemonade money.

After lengthy discussions with researchers from around the country, most were telling us that there is a drastic need for funding of positions like data managers and other allied research associates. So we have worked very hard in funding positions that could not otherwise be funded.

The Lemonade Stand grants for 2005 include funding six full time and two part time research positions for 2005. These positions include data managers, a research nurse practitioner, a research assistant, and a clinical research coordinator, (and we hope to fund 2 more positions, this year).

Also three Young Investigator grants have been made for 2005.

Our goal is to be able to raise enough money this year to double the number of research positions funded for 2006.

Take Care

Jay & Liz Scott

************************************

It is not too soon to be thinking about Alex's Lemonade Stand and our Exciting Goal this year, to hold our stand at the "Mall of America" Actually I need to get busy working on this soon!!! The date we are planning is Sunday June 12th!!!!

Also we still have quite a few books on hand ~ "Alex and the Amazing Lemonade Stand" If anyone would like to purchase one please let me know!!! It makes for a Great Rememberance of Carl since he is one of the featured friends in the book!!!!!

Today I stopped by the cemetery on my way home, and was stunned by what I believe to be a sign from Carl!!! As I was getting out of my car, a Shrek song came on the radio :0) I smiled and proceeded to walk over to his grave. A pretty little pot of orange flowers that someone had brought to Carl was leaning over, so I leanded over to set up up straight. Also near his orange flowers was a little bag of Valentines that his sweet friends brought to him :0) I stood up and looked down, then I looked up at the sun peeking through the clouds. I looked down again, and then what I saw was a little shower of sparking/flashing fluttering type stars floating around my head. Just as I realized what was happening, I was just as dumbstruck, I closed my eyes and opened them again, and they were still circling around my head and sides??? I believe it was Carl.... Just letting me know that he knew I was there today :0)

When I told Tom about it later he thought I was having a highblood preasure effect~ "seeing stars" I know better, as this has never happened before, it surely must have been Carl!!!!

Thank you all for checking in, and for all of your Awesome Prayers lifting us up so high!!!!

Love to all

Kelly
*************************************************************

New Zeocast added!!! If the music gets irritating, just click on the "music" at the bottom of the box, and it will shut off the tunes :0)

Sam took second place last Saturday in the Redwood Valley Wrestling tourney!!! GO SAM!!!!!!!!!!!! We had quite a cheering section!!! Auntie Jill, Auntie Janet, Uncle Chuck, Cousin Nicki, Cousin Tim Wolter, Auntie Holly, Cousins Mike, Jeff, Blake & Abbey!!! Cousin Kate was next door in another gym with her Basketball tournament, So Uncle Johnny & Auntie Sheila were also there. It was a fun event, and we all had a ball YELLING for Sam!!! What fun Wrestling is, we hope that Sam will keep up his interest and want to continue in the years to come!!! Wrestling really seems to suit him well, and he is definitly built for it!!! He looks so darn cute in his little singlet outfit :0)

We are all doing well, always trying to keep busy!!! We are hoping the temperatures warm up soon, so we can get outside and do some more work on the dove loft!! The birds are doing good, but we did loose a few the weekend we tried to start training them, and let them out. We discovered some of the errors we made, and what we should have done. We should have had screened in a fly-pen area around the trap to keep them contained "outside" for a week or so, to get them used to coming in and going back out the door. Then they will learn how to use the trap door and know how to return to their loft. What I was told, was that the birds become so strong, and when they get out flying around they "fly" and if they have not learned to use the trap, they can get too far away and basically get lost :0( So these birds that I thought were stupid, are really not, but the trainers are very stupid!!! Oh well we are learning as we go, and we are not giving up!!! The Lord put this project on our hearts for a reason, and we feel so strongly about caring this through!!! We have more birds on order and will pick those up in a couple of weeks. Once we get back on track, it should be a piece of cake!!!! Right??? :0) Along with the funeral dove releases we plan to do, we are hoping to do a release at the opening ceremonies for the Relay for life Events this summer!!! My vision is to open a Beautiful white wicker trunk and release a flock of doves all together!!! One other main event this summer is our Niece Melissa's wedding. We are planning on the bride and groom doing a dove release with two doves after the ceremony!!! It will be so Beautiful!!! So we are very Excited to get Carl's Angel Wings Flying!!!!!!

Carl continues to be on our minds and we feel the void he left, daily. There are few days that go by, without tears. We struggle to find peace, but know that time will help to heal our wounds. On the 26th of February, marked the three month anniversary that Carl left us for Heaven. That weekend was very difficult for me especially. I don't know if it was the anniversary hitting me? Or just one of those unexpected whap in the face experiences that can take you by storm without warning? I don't know if it is better to try to block these desperate emotional feelings when they hit, or to make myself as sick as I did from crying so much? I am trying to learn to re-direct my thoughts to something Happy and positive about Carl, but I am still in this mode of going back to the day of his death, with visions of those painful moments surfacing over and over again in my mind. I find comfort in knowing how peaceful his passing was, but the conflict in my head is of this so "full of life" little boy, that should still be here, and how he slipped away so quickly. There are so many other children still battling this beast with every ounce of energy, and their parents still searching for treatment options to continue the fight. A part of me wishes we were still in this battle, even though so very draining and hopeless, we would still have time, even if a short while....Then the other part of me feels relief, that Carl is not enduring more pain and sickening treatments that would eventually not work anyway, I feel Joy that he is free and cured, and our minds are free forever from that worry of losing him.

We are so very Blessed to be surrounded by family and friends that still want to talk about Carl as much as we do, and still want to keep his memories Alive!!! How healing it is to have this support, it brings us comfort to sit and talk about “Carl Memories” and to laugh and cry together, as we all miss this little Angel boy so very desperately. We share our dreams that we wonder if Carl is communicating through, and we share little happenings that we find curious, and believe Carl is responsible for!!! We all feel him working in our lives!! We know he is very much Alive and must be very busy up there between entertaining all the Angels, & his heavenly friends, and challenging God with all of his silly little antics, and practical jokes he is performing :0) Carl had a smile that would brighten the darkest day, and a laugh that would cheer anyone, those many memories we all share, help to warm our hearts and Always make us smile... to remember :0)

Thank you all for your steady support and Love you continue to show our family!!! We are so very Blessed to have such wonderful family and friends to help hold us up, and to know we can count on, when we are needing to be held up, and sometimes even carried. We Appreciate that you know that we are still hurting and grieving, and need to keep talking about Carl, and you understand our need to keep his Memory Alive in our hearts and minds, as you too need our support just as much!!! Carl was Loved by all of you just as much, and we all need each other to hold up and Love.


*********************************************
Song, long be my heart
With such memories filled!

Like the vase in which roses
Have once been distilled ~

You may break, you may shatter
The vase if you will,

But the scent of the roses
Will hang round still.

~ Thomas Moore
**********************************************

If you find that hope eludes you and the future
Stretches before you dark and bleak, then you can
Ask another person to hold your hope for you, and to
Believe in you even when you have difficulty believing
In yourself. Then their hope can sustain your hope.

~ James E. Miller
************************************************
I will give them an everlasting name
That will not be cut off.
~Isa. 56:5

**************************************************

Please remember in Prayer all of our friends battling cancer, and other illness, and all of the Angel Parents missing their children so terribly.


Love & Peace

Kelly & Tom
& Family


Wednesday, March 2, 2005 3:02 PM CST

Good afternoon to everyone!!!

Thank you for stopping by, and for keeping our family so close to your hearts as you so faithfully do!

I would like to ask for PRAYERS for our dear friends Jay and Virginia from MD. Jay is currently at MSKCC in the hospital, in pain, and not doing very well. It breaks my heart to say that he will be joining our Angel Carl in Heaven soon. Jay and his Mom Virginia are two very special friends that we were Blessed to know when we went to NYC with Carl. Jay had lived at the NY RMH for about a year straight. He has been through almost every treatment and was never cleared of his Neuroblastoma. Jay has been the most Amazing fighter, and would never give up!! He Always managed to enjoy living despite all the sickness and pain he has had to endure along the way. Jay and Bryan got to be friends and spend some time together in NYC too, which was a real joy!!! They had lots of great times together, and Brayn will Always remember his friend!!! Our family will Always treasure the times we spent with both of them!! You may visit Jay's webpage by clicking here ~

JAY'S PAGE

Things have been going ok here on the homefront, not too much new to report. Sam has had Wrestling camp every night this week to prepare for his big Tourney this coming Saturday!!! We are all excited for the weekend, I believe Auntie Jill and Cousin Nickie are coming to watch Sam wrestle too!!!

Sydney has been busy with her school work, and busy watching the (older boys) at wrestling, while watching Sam during his practices :0) She has turned into quite a little lady!! We still are sticking to the NO dating until you are 21 rule!!! I know that is probably not going to happen, but we still keep telling her that :0)

We hope you are all having a Great week so far, and having warm sunshine wherever you may be!!! It is supposed to get up to 40 by the end of the week, and today it is sunny :0) So I am smiling :0)


It is not always ours to understand
why morning passes to midnight
without full chance of day.
But in the darkest hours,
the fight you were given,
however briefly,
will shine above you. . .
In the stars
and in the eyes
of an
Angel.
-P.S. Points

We Love you all dearly!!!

Kelly & Tom
& Family


Sunday, February 20, 2005 10:58 AM CST

Good Morning this Sunday!!!

WOW two updates in two days, how about that!!!

I added new pictures, the above Zeocast with our Precious baby twins Kody & Kaylee. As you can see, they are growing and changing very fast!!! The babies are two months old, and they look so different :0) From the Hospital, as little tiny preemies, to thier Baptism Celebration yesterday, two cuddlie bundles of Joy!!! The babies were so perfectly behaved all through the church service!!! I am sure Carl was with us, wispering sweet soothing Angel talk in their ears, to keep them peaceful! In some of the pictures I noticed white circles near by and in the air, I always wonder if we are capturing Carl's spirit in these pictures with us? The Baptism, was very Special and so Beautiful. Tom and I were so touched to be chosen as Godparents to little Kody. What a special gift in our lives after such a tragic loss of our own precious little boy. It brought back memories of Carl's Baptism, 5 years ago in January. We will always treasure the memories of Carl's special relationship with his Loving Godparents, Uncle Chuck and Auntie Janet. And we hope to Love and guide our little Blessing Kody, just as much as Carl was, by his wonderful Godparents!!!

I also added a shutterfly link with pictures of Sam wrestling the past few weeks!!! Some are from the Redwood Falls wrestling meet, when the little guys got to do a match before the Varsity boys wrestled. Then the other pics are from the Sacred Heart match a couple weeks ago, where Sam took Third place!!! He was so proud to wear his medal and show everyone afterward!!! Sam is doing so well, he has certainly come a long way from when I had such a struggle getting him to go to T-ball a couple summers ago. He has grown from a scared, insecure little boy, into a compettitive, confident, proud athlete!! We are looking forward to March 5th, when Redwood will hold their youth wrestling tournament at 3:00pm!!! When you take a look at these pictures, notice the white round circles appearing in these photos too?? I notice two circles in a couple of them, and It makes me wonder if this is Carl, and his friend Daniel Ourada watching over Sam and protecting him??

I do believe Daniel and Carl are together in heaven, and they are watching over our families as well!!! I have to share with you a dream that Sydney had the night before last. She dreamt that she could talk to one of the doves that we have, and she asked it to go and find the doves that are missing, and show them how to get into the loft through the trap door. The dove left and brought back all the doves, and all but two doves went into the loft. Then she said we sprinkled corn on the ground, and the two doves went to the ground to eat. We took our net, to catch the two doves on the ground, and when we netted them, they changed into two boys (with Angel wings, and Halo's) the two boys were Carl and Daniel. Sydney then woke up... I am sure Carl is communicating to us, through these dreams. Our sweet niece Jenny also had a very powerful dream with Carl a few days ago. Jenny had been listening to the St. Judes radiio-a-thon for a couple of days at work, and in tears many times over the stories that were shared on the program. Some of the children talked about had Neuroblastoma, and some of the stories were very similar, and also some were about the children earning their Angel wings, very close to Carl's story. Jenny said she was Praying and talking to Carl to give us a sign that he was ok... That night (or early morning) she said she felt a tingling feeling (kind of like you have the chills) a feeling like Carl was hugging her from around her back. (Which is something Carl used to do all the time. He would Hugg us, and/or wrap his arms around our neck, or back from behind) Jenny was neeling on the floor at Grandpa & Grandma Robinson's house, by her little curio cabnet in the living room, facing Grandpa's recliner. She felt Carl wrapping his arms around her, hugging her. She said she did not see him, but she felt him and heard his sweet little voice talking to her. He told her that he visits the farm alot, and he likes to play with the cows in the barn :0) Jenny told him she Loves him and misses him....He told her he misses us too!! She said that she did not see Carl, but she could feel him there, and kind of saw an outline of him, and thought he could of had wings? I never questioned Jenny's credibility of her dream.... I am certain Carl did "without a doubt", visit Jenny, and communicate with her! I am so glad Jenny had this experience, and I am so glad he chose her to come to and work through. Carl Loved Jenny, and he knew that she and I are very close, so I know he chose Jenny for a good reason!!

Ok on to the tattoo experience!!! Pictures of our tattoo were added to the photo link (either on top or bottom of the page) All three of us went and braved all the horror stories, and graphic descriptions, and visual immages conjured up of this procedure. We all survived, and handled the whole deal quite well actually!!! We all like our "Carl tribute tattoo" and are glad we did this together!!! We are bonded for life with this common handprint replica that Carl imprinted last spring. At the time, who would have thought that his art-work, (a handprint flower) hung on the bulletin board at the Rochester Ronald McDonald House....Would turn into a tattoo, that we would share as a memorial tribute to Carl, after he earned his Angel wings...less than six months later. I am sure Carl is smiling knowing that we are wearing his handprints proud!!!!! Thank you Jackie for getting this tattoo designed, it is Awesome!!!

Tom has been out snowplowing since 5:00am. We are having our third measurable snowfall for the season, and we do have enough snow for the kids to do a little snowmobiling!! Well for a day or two maybe?? It is supposed to warm up to the fourties by the end of the week, so hopefully it will be melted by this time next week :0) SSHHHHHHHH don't tell the kids I said that :0)

Have a Wonderful Sunday, and for those that have Presidents day off :0) ENJOY your Holiday!!!!!

You are not alone, little soul,
Not here, not now,
Not before, not after.
We are all one, through all time;
Ourselves
And something greater than ourselves.
Always the same,
Always the one,
Always the Love you knew, and were,
And still are.

-B Milleson James

Love & Peace

Kelly & Tom
Bryan, Sydney,Sam
& Angel Carl


Friday, February 18, 2005 5:36 PM CST

Hello and Happy Friday to everyone!!!

Thank you all for "Still" checking in on us, it really touches our Hearts to know that you care enough to be looking in on us as often as you do!!!! THANK YOU and know that we will continue to update as long as there is still our dear family and friends stopping by :0)

The doves are proving to be a learning experience for Tom and I!!!! LOL ;0) We turned about half of the them loose last Saturday, and it took a few days to get some of them back. One was found killed, and about 7 are no where to be found??? One of our problems was that we should have let them go out on their own. We sort of helped them out the door, and we should have let them take the plunge on their own when they were ready. The missing doves may still show up eventually? But we are not counting on it at this point. We are even questioning the "homing" genetics in this whole batch we have?? A very reputable pigeon company "Foy's" that originated in Minn, and is now in PA, sells these precious white homers. We are going to replace our lost birds with a bunch from Foy's and hopefully get back on track soon!!! We are not giving up on the little darlings in the loft just yet, they will get some more training when the weather will be warm for a few days in a row, in case some stubborn birds prefer sitting in trees, over their warm loft!!! I was quite nerve wracking going outside and seeing them sitting in a tree, during that sloppy snowey/rain we had last weekend. They are quite hardy however, and none of them appear sick at all. We were driving back home one evening, and turned into the driveway. I said to Tom "Is that one of the Doves out there in the field?" So Tom shined his lights out in the plowed field, and sure enough one of the birds was just sitting there on the ground??? OK what is up with that??? Just sitting there waiting for anything to pounce on it and have a midnight snack!!! Not a sitting duck, but a sitting dove!!! So we went and got the fish net and drove back out to the dove. Tom snuck up on it and netted it quite easily. We brought it back to the loft, and let it loose with his other friends!!! He was very Happy to get back home and see the others!!! So our next step is to get a new pen ready to house the new pigeons that will be arriving soon. We hope this will all get done within a week or so, and we are Praying for warmer weather to allow for more training of our Polish bunch of doves!!!

Tomorrow is Carl's baby twin cousin's Kody & Kaylee's Baptism Celebration!! We are all Excited, and looking forward to this very special day for our little sweeties!!! Tomorrow I am joining my sweet nieces in getting a very special tattoo in rememberance of Carl!! Jackie had an Awesome tattoo designed of Carl's hand prints and a Halo above it. Carl's hands are done in Orange and it is so Beautiful!! I have never considered getting a tattoo before, but after seeing what Jackie had done, and how nice it turned out, I was very Excited to get one too!! So Jenny, Jessie and I have appointments tomorrow morning in Willmar to get our special tattoo done!!! We all think it will be even more special that we are getting this same tattoo together!!! It will kind of be a special bond we will share. Bryan likes this tattoo too, and he wants to have this done himself when he is 18. Which believe it or not, will be September 18th 2005!!! So Bryan will join us with Carl's handprint tattoo later this summer. Wow it will be Bryan's GOLDEN BIRTHDAY!!! We girls will be getting ours on our ankel, but Bryan is thinking about having his larger on his arm?? To see Jackies tattoo (that we are all getting) go to Bryan's website, and click on the Photo link. I added it to Bryan's pictures, to show him what it would look like, and you can go there and check it out too if you like.

I will sign off for now, and wish you all a Wonderful Weekend!!!! GOD BLESS you all, and once again, THANK YOU for checking in with us, and for all of your Loving Prayers that continue still.

Today I stumbled and once again
was lifted up by an unseen hand.
What comfort and joy that knowledge brings
For I hear the whisper of Angel wings.

Author Unknown

Love & Peace

Kelly & Tom
& Family


Wednesday, February 2, 2005 7:06 PM CST

Hello this Saturday evening!!! A quick update for now, then more to come soon. We let about 12 doves out this afternoon, and they clearly were nervous and confused :0) We expected they would return to their loft, but instead they perched on the roof, and practiced flying to nearby trees. We don't have to worry about them flying off anywhere, they want to stay home which is good!!! As for getting them back in their loft??? Well to make a long story short, we still have about 8 birds roosting in a tree for the night :( So tomorrow we will try to get them back in the loft, and begin lesson two of flight training :0) We will keep you posted, and hopefully get a complete update soon!!! Thank you all for your Love & Interest in our Carl's Angel wings project, and for keeping us all close to your hearts!!! God Bless you all!!

Love & Peace
Kelly & Tom
& Family
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Saturday Feb 12th 2005 6:33AM
Good Morning this Saturday!!!!! Check out the new pics added, we took a few of the Doves in their new loft the past couple of days!!! They are doing Wonderful and some are starting to find mates :0) Today will be the first day of flight around the farm!!! We are Excited, and Anxious to see them fly for the first time outside, and return to their loft!!! I will be taking pictures and I promise an update later today!!!

Until Later, Love & Peace

Kelly

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Good Evening Everyone!!

Wow it is hard to believe it is already February 2, it does not seem like we should be out of December yet. The days keep passing, and time continues to tick away, life goes on yet we still feel this void in our hearts as though it were only yesterday that Carl left us. We can get through some days feeling strong and powerful, and then the next day will be going along just fine and something can trigger that gut wrenching pain, and the tears flow like a river once again. I was driving home with the kids after school yesterday, and we were talking and laughing and all of a sudden something triggered that pain, and Sydney burst into tears. She said "Mom I can't remember his voice anymore" :..( We cried all the rest of the way home, and I tried to assure the kids that we can just think of Carl and we will hear his voice again if we try really hard. We all long so very much to see him, and hear his sweet little voice, as he used to chatter constantly. When we got home, we found a package waiting on the deck. We brought in the mail and the package. I opened some letters, and found a card from Louise and Blair Anderson, some very dear friends that also have experienced the loss of their son. I know it was about this time a few years ago that Blair and Louise shockingly learned that their son Ryan had been killed in a snowmobile accident. These wonderful people, hurting and grieving for their own loss, have reached out to us, to offer more Love and Support to us because they know the pain and agony we still are feeling two months later. I know that they are feeling these same feelings we are, and especially near the anniversary of thier son's tragic accident. May God Bless the Anderson's for all of the Love and Comfort they have given to us. Please keep them in your Loving Prayers as they too are missing thier precious son. After I opened the mail, I went on to open the package that had come from my sweet friends Holly & Karla from Wisconsin. What we found inside, as I was opening the package through sobs....Was a beautiful wooden box. It is a memory box to keep special little things of Carl in... to remember him. On the top of the box is written ~ " I am with you Always" Which made me cry even more.... I told Sydney, Look at this Sydney, Look at what it says, I think this came today, for a reason, and it is a sign from Carl that he is with us Always... Thank you to Blair and Louise, and Holly & Karla for your Love you sent to us. You have touched our hearts, and we Love you all dearly!!! Thank you to everyone that continues to think of us, and know that this process of grieving is not an overnight thing... grieving the loss of a child is a lifelong struggle. We have Great days, and we will have the lowest of low days in amoungst the fine ones, and this will never end, as long as we Love, we will grieve forever...It is because of Love, that loss is so painful.

What have we been up to??? Carl's Memorial (grave stone) is in the works. We are working with Phil at Nelson~Martin Funeral Service and Borth Memorial's for Carl's Memorial. It will be very beautiful when it is all complete! We are having a picture of Carl and his 4H calf "Spike" etched in the stone, along with a picture of a dove. We have chosen the verse from Luke 3.22

"And the Holy Spirit descended upon him in bodily form, as a dove, and a voice came from heaven, "Thou art my beloved Son; with thee I am well pleased."


The doves are coming along very good!!! Tom (tool time Tom ~ just kidding heeheeehee) has been busy working on their new loft!!! He and Uncle Chuck moved the building to our farm last week, and this past weekend, Tom & Uncle's Denny, Chuck & John worked on the exterior. It is now all enclosed with some new siding in spots, a door and four new windows!! As soon as it gets warm enough, I can get busy painting!!! This weekend we will try to finish the inside pens and get the trap and holding pen installed. We should be able to move the doves into their new home "hopefully" by the end of this weekend!!!

Sam has been busy with Wrestling these past weeks!! He had a little exibition match on Monday evening, and will be having another one Thursday at the Redwood School at 6:00pm. Their scheduled tourney was cancelled from a couple of Saturdays ago, and will still be re-scheduled in the near future, but they are doing these little practice tourneys before the big kids matches for practice!!! These little guys are so darn cute to watch!!! Sam was given special Wrestling shoes from our little friend Dominic Ourada, who is a size larger than Sam!!! They fit Sam just perfect, and he is so Proud of his new shoes!!! Thank You Dominic for passing your shoes on to Sam!!! Sam will wear them well!!!

Grandma Phyllis Update ~ Grandma had surgery today on her back, at Unity Hospital in Fridley. She had been having such terrible pain in her lower back for a couple of weeks. Jill and Joy were there with her today, and everything went well. The latest report was that she was not having any pain, but she was shortly out of recovery. We will pass along any updates, but Grandma should be back at Woodale in a day or two. She is in room 3001 at Unity Hospital.

Thank you for checking in, and for all of your Loving Support that continues for our family!!! We Love you all!!! We will update again soon!!!

Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises
was often times filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being,
the more joy you can contain.
Is not the cup that holds your wine
the very cup that was burned in the potter's oven?
And is not the flute that soothes your spirit,
the very wood that was hollowed with knives?
When you are joyous, look deep into your heart
and you shall find it is only
that which has given you sorrow
that is giving you joy.
When you are sorrowful look again in your heart,
and you shall see that in truth
you are weeping for that which has been your delight.

Kahlil Gibran

Love & Peace

Kelly & Tom
& Family


Friday, January 21, 2005 3:29 PM CST

Good Afternoon, and Happy Friday to All!!!

The above link was just added ~ Carl's Angel Wings ~ I finally took some pictures to share with all of you!!! I have also decided that my next hobby will be Dove Photography :0) It is quite a challenge getting the right angle, and timing to capture their total beauty!! The wings and tail feathers are so breathtaking as they take off or land. The sound of their wings flapping is also so Amazing to behold!!! The birds are doing well, they are now used to their temporary home until thier new cozy loft is complete!!! Tom found an old shed/garage that he was offered to have, so as soon as the weather clears, the guys are going to work on moving the building home. We have an old cement slab down in front of the house, on the edge of the grove that we will set this up on. After a few repairs, and some inside work to hang partitions, perches, and nesting boxes, we should be able to move the doves to their new loft!!! We will then start letting them out and train them to return through a trap door. This is all so Exciting to me, and it feels so good to be moving steadily forward with our dream!!! It feels so right to be putting energy into something this Wonderful to keep our Precious Carl's Name and Memory Alive!!! I just know that Carl had put this whole idea into our heads as we feel our grief lightly lift, when we foucus on his doves.

Today we got our first measurable snowfall. School closed early, and the kids are enjoying thier afternoon home playing!!! I was lucky to get started on the mail route early today, and got finished in time to pick the kids up from school. They always like it when Mom shows up and gets them off the bus at school :0) It sounds like tonight and tomorrow will still be a wintery mix of snow and sleet, and strong winds :0( I just keep thinking of warmth, and sunshine, and BBQ'S and Bon-Fires, and Go-carts, and Beautiful Flying Doves, and Flowers.....Mommy Flowers.

Tom and I have a new role and purpose in our lives. We have been chosen as God Parents for our little baby twin boy ~ Kody James Robinson!!! We are Thrilled beyond words, and so feel so very Honnored that Matt & Mandi gave us this privelidge!!!! We are so Happy we will have this precious little guy to bond with, Love up, and Spoil Rotten!!!! I will try to get some pictures of the twins Kody & Kaylee added soon!!! They are so Adorable, and so very Moochable!!!! I know that Carl is looking down on his precious little cousins, and watching over them carefully. He was so Excited for those babies to be born, I am sure he is visiting them and protecting them!!!

I also believe that Carl has been watching over Mom while she is working every day!!! I have never seen so many dogs in my path, while I have been working before?? I have always seen dogs, that isn't the question, but so many dogs come up to me or the car to show me they are Happy to see me!!! (not the typical bite the seat off the mail carrier routine) I get such a kick out of a Happy dog that jumps up and puts his paws in the window to get some lovin :0) It makes my day to be greeted by these furry friends, I just believe that Carl is up to this, as he knows how this makes Mom Happy and Smile!!! :0)

Thank you all for stopping by!!!! And for keeping those Prayers flowing for our family!!!! We Love you all dearly and Love knowing that you still read Carl's site, and check up on us so often!!!!

Please keep all the children battling Cancer and other illness in your Powerful Prayers!!


Dear God,

I have lost my precious Love.
I feel as though
my spirit is broken.
Please lift my heart
above this pain
to embrace your peace.
Reveal to me the truth
and show me that
Love never dies.
Amen~
Marianne Williamson

Love & Peace

Kelly


Thursday, January 13, 2005 3:58 PM CST

Hello to all our dear family and friends!!!

I guess it is time for an update, I am starting to get emails from many of you wondering how we are doing? :0) Thank you all for continuing to check in on Carl's site, and for keeping us so close in your thoughts and Prayers!!! We are so Blessed to have all of your steady support still! We Appreciate, and Love you all dearly!!!

Our family has been very busy it seems, as the weeks keep ticking by, and the days seem to fly, but it still is so very different and strange without Carl being the one to keep us busy. We were so accoustomed to running here and there, it just seemed to be our normal. But now we are living in a different sense of busy, and it feels busier than before. If we could have kept Carl with us, we would have been satisfied to live our crazy busy life taking care of him...forever if we would have been allowed.

The kids have been adjusting well, and don't seem to show any emotional distress. We talk about Carl constantly, and are always finding things that remind us of him. Things he would say, or things he would do. We do believe Carl has been giving us some signs. He wants us to know that he is visiting from Heaven and very much alive! Last Sunday Tom and I drove to Alden Mn and came home with 24 white doves/homing pigeons (More on this later) Sydney and Sam stayed with Uncle John and Aunt Sheila for the day. When we got home, the kids and I were in the kitchen talking, as I was making them a sandwich. We were talking about their cousins Sarah & Kate, and then the kids took their sandwiches into the dining room to eat. A few moments later a picture of Kate (on the frig with a magnet) flew off the frig, and made a loop in the air, then a larger loop and landed on the floor in the dining room. Sydney yelled "MOM CARL'S HERE"!!! Later in the evening, I was sitting at the table with Sam helping him with his homework, I got up to walk into the kitchen. I looked down, and on the floor by my feet was a rolled up drawing of Carl (A Charicature of Carl done in NY) which was in a bread basket on top of the frig?? Carl again??? It was pretty curious, since nobody was messing around with things on top of the frig, and it could not have just fallen down??? I have been reading a book about "The Other Side" about how our Loved ones do pay us visits, and want us to know that they are very much alive, and well!! I have found much comfort in this reading, as there are other things mentioned that our Loved ones may do to get our attention!! Pictures is a common item that is manipulated, to get our attention. One evening the kids and I came home from shopping. Sam went into my bedroom and was going to hop in my bed to watch TV. He wanted Sydney to come in and turn the TV on for him, so she did. Sydney said "MOM LOOK AT THIS!!" There was a polaroid picture of Carl leaning up against a check box on top of the dish box on the TV? She asked me if I did that? And No I did not, I had the picture laying flat, next to the dish box. When Tom got home, we asked him if he did it, and he also said No??? This picture thing did get our attention good!!!!! We try to pay attention now for other signs, or things that seem to be out of the way, but do to our house usually being quite disorganized it must be hard for Carl to decide what he can move around so that we would notice :0) Some of you have told me about dreams you have had of Carl!!! Also a couple of times certain songs have come on the radio and then followed by "I'm a believer" by Smashmouth (From Shrek)Both Auntie Sheila and I had this happen to us.. Maybe coincedence?? Maybe Not???

Sams fishing trip ~ Tom and Sam went up to lake Elizabeth to go fishing last Saturday!! They had a Great day, but only caught two fish :( One was pretty small, but the other they brought home to show Mom!!! Sam was pretty Proud of his fish (Perch) Tom cleaned it, and fried it up!!! We all had a taste of Sam's fish!!! They had a nice day to go fishing, and they had fun!!! Uncle Chuck met them at the lake too!! Tom said that Sam enjoyed eating the snacks and drinking Pop that they brought with almost more than fishing!!!

The Doves ~ or as we will call it "Carl's Angel Wings"

Tom and I wanted to do something that would carry on Carl's memory for a very long time. Something of a living memorial in Honnor and Tribute to Carl!!! We came up with the idea of starting to do "Ceremonial Dove Releases" like we did at Carl's funeral service. We want to give something back to our family and friends and community for all of the support and Love we have have been given. Our plan is to offer the free gift of a dove release to any family interested, that is planning thier Loved one's final arrangements with Nelson-Martin Funeral Service. From the moment we met Phil Martin at the hospital, the night Carl had passed, we felt such a sense of trust and Love. Phil told us the other day that when he saw me holding Carl at the Hospital, he didn't know what to say....He didn't need to say a word, as Phil sat down next to me and put his arm around me, I could feel everything he couldn't say, and that was all that mattered. We were treated with grace and dignity, during our planning of Carl's funeral, we could not have received more sincere compassion anywhere!! We are so very Thankful for everything Phil has done for us for Carl! We met with Phil a couple of days ago to order Carl's grave memorial, and we got that all set and in the works!! We mentioned our idea to Phil, about the doves, and he was just as Excited as we are about this whole project!!! We will keep you all posted as this whole plan transpires!!! The doves are eight weeks old right now. They have not been allowed outside to fly around yet. After a few weeks, we will slowly let them outside in our yard, and get them to go back into their loft from a trap door. Then after they have all mastered that well, we can take them further away, small distances at first, then further and further to practice flying back home. Eventually they will return home from anywhere we release them from!!!

We are looking forward to Jenny & Jessie coming home this weekend!!! We miss everyone so much since Christmas!!! The kids have got to see the twins Kaylee & Kody a couple of times, but I have not had the pleasure yet. Maybe this weekend I will get to see them and hold them, and mooch them up :0) They are both home and doing very well!!! I saw Mandi today as she stopped in the post office, and she looks Fantastic!!!

Thank you all for stopping by, and for all of your continued Love and support!!! Try to stay warm, at least here in Minnesota, it is freeezzzzzing out there!!!!!! I heard it is supposed to warm up to about 5 above by Monday Yippeeee!!!!! We still have little snow, just a small bit, not enough for sledding or snowmobiling yet. But I am not complaining, only the kids :0)

Take Care everyone, have a Great weekend!!!!

Love & Peace

Kelly


Monday, January 3, 2005 9:09 PM CST


Good Morning everyone this Saturday!!! Be sure to take a peek at Camp Jornada's Website ~ link above ~ Stacey added pics (home page & view photos) of the kids on New Years Day at the Donald House and the Hotel swimming!!! Tom and Sam are going Ice Fishing today :0) I am sure Carl will be right there with them smiling :0)

Have a Great weekend everyone!!!

Love & Peace

Kelly

************************************************************




HAPPY NEW YEAR!!!!! To all our dear family and friends!!

This past year started out with sadness and ended with sadness. We learned on December 1, 2003 that Carl's neuroblastoma was growing again in his little body. We began chemo again right after we made a plan of attack, then the year 2004 began to unfold. In January we took a wonderful vacation to Disney World!!! Carl was feeling well and we all enjoyed every minute of our Magical trip!!! We made many memories during our first real family vaction we were Blessed to have together with Carl!!! February started a roller coaster of progress with Carl's treatment, and the heartaches of infection and antibiotics nearly every month. We were Exstatic to hear his test results were very close to being considered "NED" (No Evidence of Disease) we kept our hope alive, and faith strong, both never faultered as we continued our fight!!! In April we returned to New York for a Comprehensive Re-Evaluation. Carl was doing well, and his disease was considered stable. The highlight of our trip, was a reunion with our Dear cousins Freddy & Patti, and Ann & Keith Hauck!! We will never forget this precious time we spent with our NY family and friends!! Carl would recall this weekend many times, and tell us about his favorite moments he remembered!!! The summer was right around the corner, and we began working on Alex's Lemonade Stand, and gearing up for our big Event at the Minnesota Twins vs. Philadelphia Phillies game!!! Carl was unable to attend the Lemonade Stand as he had become ill a few days prior, with a (dose limiting toxitity) reaction to Irinotecan, the chemo he was treating with. Carl spent almost two weeks in the Hospital between Redwood Falls, and Rochester until he was recovered. We went ahead and held the Lemonade stand, and Carl (with the help of Auntie Jill and some of the sweet nurses) served up Lemonade from his Hospital room, and sold $20.00 himself for Alex's Lemonad Stand on June 12th 2004!!!! Carl's chemo was then changed to another doseage and schedule. After two rounds of this combination, we learned that his neuroblastoma had progressed, and it was now 60n his bone marrow, and spots were seen on his liver. Again his chemo was changed, we did a high dose round of Cytoxin/Adriamycin, and Carl became our little baldy again. His counts were very affected from both the chemo, and the cancer, so he required many transfusiions for many weeks. Chemo was changed again to try and surpress the neuroblastoma, and recover his counts. The counts got better, but the cancer started to progress in the liver. Through all of the summer trips to Rochester, and the Redwood Hospital for transfusions, and antibiotics (more infections) Carl had a wonderful couple of months playing with Sam, Sydney, his cousins, and enjoying all the things little busy boys do!! Carl got to bring his calf "Spike" to the Renville County Fair!!! This is one of our Highlights of the year, and we will remember how Proud Carl was of his calf, for the rest of our lives!!! Carl had another line infection, but his fever was managed enough to keep him out of the hospital for a couple days allowing him to spend two Wonderful days with his family at the fair!!! Watching Carl invite any passer-by to pet his calf, and seeing the smile on his face were the most priceless moments we have ever had!!! Carl was in his glory, and we were just as Proud of him, as he brought many smiles to faces those two days of the fair!!! Carl's summer was not all pain and agony, he enjoyed life each and every day to the fullest!! He never stopped to rest, or complained of pain, as he knew that he may not get to run and play if he admitted any discomfort. Carl Loved his time on the farm, and his time in Rochester!!! When Sam went back to school, Carl was a very sad little boy, he would even ask when we would be going to Rochester again. Carl did Love his time at the Donald House where he spent many hours playing with his buddy Andrew and other kids he met there!!! Even in the Hospital, Carl made fun out of each and every day, and found Joy in riding his little tractor like a maniac, and making trips to the playroom for activities whenever he could!!! Carl needed to go to school, and he wanted to go to school more than any child I have ever known. Carl wanted to go to school, just like Sydney and Sam, and he wanted to learn just like the other kids did!!! I was able to get Carl enrolled in Head Start, and we were so Excited for his first day to happen!!! Carl begged me every day to go to school, and he could hardly wait for his first day to come!!! The rest of the story is very sad. Carl went to Philadelphia for a treatment we had hoped and Prayed would slow his cancer, and give us more time and options to keep him with us longer, and allow him to go to school, just as he wanted so bad. After the MIBG treatment, Carl came home and was never the same. His cancer had progressed terribly the last week before the treatment, and he would never get that chance to go to school. One week after Carl returned from Philadelphia, his body quit fighting. Carl never gave up, but his little body stopped working. Carl would never have to fight for his life, or feel this dredded pain ever again. He earned his Angel wings, and flew from this life into the life he had so deserved.... He was cured of Cancer forever!!! Carl Won his long battle....In Heaven!!! Carl is now our little Angel in Heaven, and our lives will never be the same without him. What does 2004 mean to us??? It was the Greatest Joy we could have ever known, especially when we thought he was nearly cancer free once more. And it was the Greatest Sadness we have ever known, when Carl became cancer free. As Carl's button says ~ "Cancer No More in 2004"

Now we begin 2005. A new year, and a new life. Carl has a new life too....he has a new life of complete and total Happiness!!! Carl is still with us, but with us in another sense. He still surrounds our lives, and is present in our hearts more than ever!!! We think about Carl constantly, and Pray that he gives us signs from heaven that he is well and Happy!! We are comforted with the thought that we will one day be with Carl again, and that to Carl the time of waiting will not seem so long. In God's time it will feel like the blink of an eye. Carl will be with us and watching over us, until that day we can join him in Heaven for that Wonderful Reunion that we await!!!

Our weekend was very nice!!! On Saturday January 1st, we put on a house supper at the Donald House in Rochester!!! It was so fun, and we all had a Wonderful time doing this!!! We enjoyed visiting with Deb and Andrew, and Shelly, Justin & Ashleigh from Crookston!!! Our crew included Uncle John & Auntie Sheila, Sarah & Kate, Uncle Chuck, Uncle Denny, Auntie Janet, Auntie Jill & Cousin Nickey, Auntie Joy, and Tom & I, and Bryan, Sydney & Sam. We served Roast Beef sandwiches, Augrautin Potatoes, salads, and we served a Happy New Years cake with Ice Cream!!! It was good to go back to the Donald House, but I felt very emotional that Carl was not there with us for the first time. One little girl even asked where Carl was (a little friend he had played with) this nearly broke my heart as I explained to her that Carl passed away. Oh how I wished I could turn back the calander a couple of months, and have him come running in the room to ask everyone "Whatcha Doin?"

After our house supper, we all went over to our hotel and the kids all swam and played for a couple of hours!!! Stacey, Jesanna & Kyle, and Megan from Camp Jornada all stayed at the Hotel too!!! We had a nice evening of visitng and laughing!!! it was so good too, to hear many Carl memories told throughout the day and night!!! Carl made so many people smile, and laugh :0) I am sure he was so Happy to know that we were all together and had such a nice time this weekend, and that his Memories are so much alive in our hearts as we talk about his many funny moments!!! The hotel also brought on many emotions for me as we had celebrated Carl's 4th Birthday last December there, and Carl and I had stayed there many times during treatments. All of Rochester is loaded with many memories of Carl. He was everywhere in Rochester.

Thank you all for continuing to check in with us, we appreciate all of your Love and Support still!!! You are so important in our lives, and we are grateful for your ongoing support!!!

Please keep all of the children battling cancer or other illness in your Powerful Prayers!!!

They whom we love and lose
are no longer where they were before.
They are now....
Wherever we are.
-Saint John Chrysostom

I can tell you this
about Angel children,
from my heart, where I know its truth:
In the hand of God
or at his right side,
or on the cobbled, golden street of heaven,
his winged Angel Children
surpass in Love and Joy
all that they ever knew with us,
And lose forever
the merest memory of pain.
-B Milleson James

both from "I am wherever you are" by N.A. Noel

Peace & Love

Kelly & Tom
& Family


Thursday, December 30, 2004 4:36 PM CST

Hello this Beautiful Thursday!!!!!

Today is December 30th, sunny right now, 50+ degrees, no snow in SW Minn??? I can't help but wonder if Carl has his hands in this little Phenomenon?

Thank you to everyone that released balloons for Carl to Honnor his 5th Birthday on the 28th!! We were so touched to be at Sophia's wake on Tuesday evening and have people know that it was Carl's birthday!!! We were very Happy knowing that many Orange balloons were sent up to Carl that day, and we are sure he was very pleased!!! We could imagine Carl and Sophia catching them as they floated up to greet them....both silly little Angels giggling all day as they enjoyed all of your Birthday Balloons sent with Love!!!

We are so glad we were able to go to Boston to be with Diane & Dave and her family for Sophia's Celebration of Life. Thank you to EVERYONE that made it possible for us to make the trip!!!!! We met so many warm loving people there, and visited with friends we knew, Bob Oconnor Anna Bananna's Dad from Chicago, and Ellen Hanson from Cape Cod!! It was so good to seem them again, and having some time to visit together. Dianes whole family was so welcoming to Tom and I, we enjoyed every minute of getting to know them!!! Sophia's funeral was just as sad and Beautiful as Carl's. The church was so Beautiful with flowers and greenery, the music was equally as Beautiful, it was all just so Beautiful!!! The singer was especially picked by Diane, as she found her at a Chirstmas eve service somewhere else, Diane said she knew that Sophie would love this woman to sing to her. And she did sing to Sophia, soo Beautifully!!! We feel peace knowing that Carl and Sophia are up there together, and they are soo Happily playing!!!

Sydney called me today while I was working, she wanted to tell me of a dream she had a day or two ago. She said that we were at a clinic or Hospital? Tom and I were talking to Doctors about Carl's situation. She said that we were waiting for results or something?? Waiting for an answer If Carl was cured or if we would have to give up. Sydney said, Carl came out to her and said "Sissy I don't have cancer anymore!!!" I told her that maybe this is a message to her and us, that he is ok, and he is telling us he is cured in heaven!!!! Exactly what Sydney thought too!!!!

Thank you all for continuing to check in on us, and for all of your notes and emails!!! Your support has not failed, as we feel all of your Prayers giving us strength through these difficult weeks!! We are very Blessed to have all of your faithful Love!!! God sure knew what he was doing when he chose Carl to bring so many people together. If this was his mission, I think it was a very successful one!!! God Bless you all!!!

Love & Prayers

Kelly & Tom
& Family


Saturday, December 25, 2004 5:45 PM CST

Merry Christmas to all our dear family and friends!!!! May you all be finding Joy and Peace this Holy Day and Enjoying the Celebration of our Saviors Birth!!!

We have been so saddened by the loss of two more of our Precious warriors. Little Trey and Sophia are spending Christmas with Jesus this year as Beautiful Angels. I know Carl is showing them all around and had probably lined up two Hot Wheels vehicles for his friends and they are busily racing around the Golden Streets of Heaven Smiling ear to ear and gigiling together :0) Please keep both Trey's family and Diane & Olivia, Sophia's Mommy & sister in your Powerful Prayers at this most difficult time. I have heard that God chooses the best to bring home during HIS Holy Season, and this Beautiful time of year will Always provide the Best of Memories of our Angels in Heaven!

We will be canceling our Balloon Release at the farm on Tuesday December 28th, so that Tom and I can go to Boston to be with Diane for Sophia's Celebration of Life. I still encourage anyone that wishes, to go ahead and release balloons on Tuesday anyway, from wherever you may be in Honnor of Carl's 5th Birthday!!!! We will still be sending some balloons to the Rochester Ronald McDonald House, and we will try to send some up to heaven for Carl from Boston. Carl will not mind if they come from everywhere, and at different times :0) I know he will be watching over us in Boston, and he will know how much we needed to be with Diane with her loss of Angel Sophia.

We have had a very nice Christmas!! Bryan is at home and did not get to be here with us, but will be coming out next week to Spend some time with us then!! Our family is planning on putting on a house supper at the Ronald McDonald House in Rochester on New Years Day!!! We are looking forward to getting together with family again, and seeing all our friends at the Donald House!!! We miss our friends there so much, and we want to be sure and see Carl's best buddy there Andrew, as he will be going home in a couple of weeks.

We started our Christmas Holiday by putting up a Beautiful Memorial Candle Holder with a 7 day candle, at the cemetery by Carl's grave. We lit the candle and then went to the Christmas vigil at chruch. The church looked so pretty with all of the Poinsetta's and greenery. I was so touched to see one of the Poinsetta's near the manger on the Alter was holding one of Carl's Memorial Cards. We went to Janets for our traditional Christmas Eve Family gathering. I was worried about emotions at Janets, because all of the kids Loved Auntie Janets so much!!! It is their favorite Memory of Christmas, and I wondered how it would feel without Carl there with us. I do think somehow he was right there with us, and we knew he was not far away!!! Some things we did at Auntie Janets were tradidional, and others were very new!! I think the new helped, and made for new traditions to carry on!!! Like our wine and beer tasting contest's :0) We had so much fun and lots of laughs too!!! I hope this doesn't mean we're all turning into a bunch of drunken wine-o's :0) After we left Auntie Janets we drove through the cemetery to check and see if Carl's Candle was still glowing. When we turned up the street and got near the cemetery, we could see the bright red glow from the road. It was so Pretty!!! I knew Carl would love his candle, because he was always in to flashlights, and lights :0)

We enjoyed some time at home this morning with Sam and Sydney getting their Santa presents!!! Sam was very Excited to get the Remote Control Hummer he asked Santa for!!! Sydney got a Stereo Boom Box for her room!!! It was so fun to see the Excitement in Sam especially, I wondered if Carl was looking down with a smile on his face :0) The last time Tom and Carl and Uncle Chuck were in Rochester, they stopped at Cabella's and they picked out a Ice Fishing House. It was so cute, when they got home, I was laying in bed with Carl talking about his day with him.. I asked him "Did you and Dad get a Ice Fishing House today?" And before I could get all the words out, Carl was SSSHHHHHHHHH'ing me and putting his little hands over my mouth :0) He was so worried that Sydney and Sam would find out, and he wanted to keep it a secret. Tom set the Ice Fishing House up out in the front yard last night after Sam was sleeping, and he woke up to a Big Surprise outside this morning!!!! We are not sure the Ice conditions? But we may try to go Ice fishing tomorrow, and I am sure Carl will be sitting right there with us, very very Pleased!!!!

We had dinner with my Sister Holly & her Husband Terry & their family today!!! It was so tasty, we really enjoyed a wonderful dinner!!! We all went up to Woodale then and spent some time with My Mom and Dad!!! We had some pepermint candy cane ice cream (my favorite) and cookies!!! We also watched the movie (The Christmas Story) Also another Christmas favorite of mine!!!! We stopped at the cemetery again, to check on Carl's candle, and it was still burning brightly!!! What a warm feeling to see that candle glowing for Carl. I am sure it will be even more Beautiful when we get a blanket of white snow covering the ground.

Speaking of snow, we do not have any snow to speak of!!! I am not complaining though, I have a feeling once we get it, we will be shoveling for about three months straight. The kids are so Excited for snow however so they can go snowmobiling and sledding!!! So we are hoping for the kids to get a fresh Beautiful Blanket of snow soon!!!

We would like to wish you all a wonderful Christmas and Peaceful weekend with all of your families and Loved ones!!!

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

I see the countless Christmas trees around the world below.
With tiny lights, like Heaven's stars, reflecting on the snow.
The sight is so spectacular, please wipe away that tear;
For I am spending Christmas with Jesus Christ this year.

I hear the many Christmas songs that people hold so dear.
But the sounds of music can't compare with the Christmas choir up here.
I have no words to tell you the joy their voices bring.
For it is beyond description to hear the angels sing.

I know how much you miss me, I see the pain inside your heart.
But I am not so far away, we really aren't apart.
I cannot tell you of the splendor or the peace inside this place
Can you imagine Christmas with our Savior, face to face?

I will ask him to light your spirit as I tell him of your love.
So then pray for one another as you lift your eyes above.
So be happy for me, dear ones, you know I hold you dear.
And be glad I'm spending Christmas with Jesus Christ this year.

I sent you each a special gift, from my heavenly home above.
I sent you each a memory of my undying love.
After all, love is a gift more precious than pure gold.
It was always most important in the stories Jesus told.

Please love and keep each other, as my Father said to do.
For I can't count the blessing or love he has for each of you.
So have a Merry Christmas and wipe away that tear.
Remember, I am spending Christmas with Jesus Christ this year.

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~


Peace to All

Kelly & Tom
Bryan, Sydney
Sam & Angel Carl


Friday, December 17, 2004 7:05 PM CST


Congratulations to Matt & Mandi Robinson with the birth of their twin babies on Tuesday December 21st 2004

Baby girl ~ Kaylee (sp?)
Baby boy ~ Kody

We visited them last night and they are Healthy and Beautiful!!! Mom Mandi looked Fantastic too!!!! The babies will have to spend a little time in the hospital before allowed to come home. Kaylee was the biggest at just over 5 pounds, and Kody was just under 5 pounds. Mom and Dad are Happy and very Proud parents!!!!

I also have some sad news, and would like to ask for your Awesome Prayer Power at this time. First off Bryan's grandpa Bill Creamer passed away yesterday. Please keep Brayan his Dad Bob, and all of his family in your Prayers at this difficult time.

Please keep our Sweet little Friend Sophia in your Prayers as she was admitted to the hospital last week, with an enlarged liver. Please stop by her site and offer your support.
SOPHIA'S PAGE

Please keep Trey in your Prayers as he is at home, and will soon be earning his Angel Wings.
TREY'S PAGE

Thank you for all of your continued Love!!!! We would like to wish you all a Beautiful Christmas Weekend!!!!!

Love

Kelly & Tom
& Family
*************************************************************



Good Evening this Friday!!!

Thank you everyone for your continued Love and Support!!! We appreciate every note, card, phone call, visit, that you have taken the time to offer!!! Today we recieved a Beautiful floural arrangement from our Sweet Kala's family!!! Thank you for Brightening our day, it was so good to get new flowers again, that reminds us of Carl's Love for flowers!!! I have some button Mum's that I pulled from the "Son" arrangement that we had at the church for Carl's funeral. I ordered them because they resemble dandelions :0) I have a small bunch in a little glass of water, just the way I would in the summer. They remind me of Carl and believe it or not they still look Great after three weeks!!! Amazing!!!

We are planning this balloon release on December 28th for Carl ~ In Honnor of his 5th Birthday!!!!!

Jenny B. You asked what the plan is, so I will give it to you!!!! :0)

For anyone that is close by, and would like to join us to release balloons here at the farm, we are inviting you to come be here with us to send your balloons up to Heaven for Carl!!! Come to the farm with your balloons ready. We are planning on doing our release about 4:30pm, to allow anyone getting off from work to get here. We will also Celebrate Carl's day with some food, drinks and cake & Ice cream!!! Don't worry about bringing food, we will take care of the refreshments, just bring your balloons!!

Anyone that cannot join us here, but would still like to join our release is welcome to do so from wherever you are at, on that day!!! And whatever time is convienient for you to do so is just fine!!!! I have talked to Helen at the Rochester Ronald McDonald House, and we will be sending some balloons there on the 28th for Andrew and who ever would like to release a balloon from the "Donald House" for Carl :0) Carl spent alot of time at the Donald House, and it was his second home for over two years, so I know it will be special for our friends there to be included in his Celebration!!!!!

This is the plan for now, and we look forward to a very special day for Carl!!!!! It feels very good to be planning something for Carl, in his Honnor!!! What has helped us along the most since we lost Carl, is all of the support from all of you!!! We are so Anxious for Christmas next week, as we know many of our family will be back home again and we will be able to spend time together again!!! We miss you all so much, and can't wait to see you all soon!!!

Matt & Mandi are doing a very good job of keeping us all updated on the Twin Baby news!!! The twins are growing like crazy!!! Mandi is on bed rest now, and must take it easy to keep those babies in the oven for a couple more weeks!!! She is so adorable and pleasingly plump :0) She looks Great and is the cutest expectant Mom ever!!!! We are so Excited for the arrival of those babies!!! The Robinson's need some Happiness and Excitement in the family, and those babies are going to give us all that lift that we need!!! Carl was so interested in Mandi being pregnant, and her growing belly :0) The last time he saw Mandi, he was sitting on my lap down at Grandma & Grandpa Robinson's, Carl wanted me to scoot our chair as close to Mandi as we could, so that he could feel Mandi's tummy :0) He would have been such a little helper for those babies, and in such glory holding them :0)
We will keep you posted on any breaking news!!!!!

Thank you all for continually checking in, I think it is therapy for me to continue journaling, it makes it seem like Carl is not too far away...

Please keep in Prayer all of our friends battling NB and other cancers, or illness.

Tom and I are going to get away to St. Cloud tomorrow night after I get done working. We are going to enjoy a night away, and do our Christmas Shopping. We are looking forward to a this little escape!!! Have a Great Weekend Everyone!!!!

We Love You ALL!!!!!!

Kelly & Tom
& Family


Monday, December 13, 2004 4:40 PM CST

Good Evening this Monday!!!!!

Thank you all for continually checking in, and for all of your Faithful Love and Support that goes on.... for our family!!!

Last night Tom and I attended the Compassionate Friends Candle lighting service in Redwood Falls. This was a world wide ceremony for parents that have lost a child. It was good to meet other parents that know exactly how we feel, and are feeling those same feelings as well. This is a most difficult time of the year to be feeling the loss of a child, and it was good to validate our thoughts and emotions with other parents. As we have said before, we belonged to a club that nobody wanted to be a member (A Neuroblastoma Parent)....Now we belong to another club that nobody wanted to join....(Parents who have lost their child)....Or as I prefer to relate...(Parents of an Angel)....I guess the latter feels better to me.

Our lives have not stopped, even though our hearts have this huge hole....We are back to working, and homework, and chores, and trying to weed our way through each day the best way we can. Work has been good, It has kept my mind busy, and my body active. I try to find joy in each day as I go about my work. Sometimes it is a cute dog that runs out of a house to greet me as I deliver a package....maybe a couple adorable goats standing against a barn with the bright sun warming them :0) Or a flock of white doves that pass over and land in the field near by.... Or today my joy was seeing Jenny Bloedow's picture on each news paper I slipped into mailboxes all day :0) Today that made me smile, all day long as I worked :0) Ok Jenny I want to join that dodgeball league next year too!!!!!

Last Wednesday we enjoyed the company of John & Char Frank, and Kala, Laurie Ourada & Dominick, and Joel & Linda Harmoning with their adorable kids!!! It was a warm evening of good company, conversation and sharing. Laurie brought Sam his very own Christmas tree, with ornaments to decorate it. Sam was also presentsed with many special ornaments from the Franks and other friends that wanted to help Sam decorate his tree!!! We made Cranberry & Popcorn strings to hang on Sam's tree, and enjoyed Hot Chocolate and goodies together!!! It was a very nice evening that we will cherish in our hearts forever!!!

Saturday evening after Mass, all the children put on this years Christmas Program at Church!!! I noticed one of the teachers wearing an Orange ribbon on her sweater, and I thought to myself...."Orange ribbion...Carl!!!" Then as all the children came in to take their places for the program, I noticed that all of them were wearing an Orange ribbon!!! When the littlest children did their part, all I could do was think of Carl up there singing with them, as he would have been in this group this year. The tears started to flow, and then they made an announcement that this years Christmas program was dedicated to Carl Robinson!!! How very Precious.....

We are all missing Carl so terribly....It is still so hard to believe he is gone....the house is so full of Carl everywhere....his toys, his little things he kept, his Shrek :0) Sam is bringing Carl up quite often, which is good too...I think he is trying to feel better about Carl being with God in Heaven and not with us here. Sam asked me yesterday if God was taking care of Carl. I told the kids about a couple of dreams that I had....they seem kind of silly, but It made me feel a little better, and It made Sam and Sydney laugh :0) The first dream I had, involved myself calling for Carl....He wouldn't come and wouldn't come, so I went to go find Carl....When I got to him, he was playing with a baby Orangutang :0) Then the second dream...I was carring Carl around, and there were animals all around, and a lion came walking up to us???? I decided that Carl must be in Heaven....since there are tame wild animals around....and Carl's job is helping to take care of the animals up there :0)

I didn't feel like my dreams were a definite sign, but maybe a little glimpse??? I keep Praying for a sign....A unmistakeable sign that Carl is ok....I have read about other parents receiving signs from their child, and feeling a sense of peace about their Angel, and I am hoping and Praying for that too.

Auntie Jill has suggested that we do a Balloon release for Carl on his Birthday ~ December 28th!!!! I think that sounds like a Wonderful Idea and I invite any of you who would like to join us, to do so, wherever you are.. in Honnor of Carl's fifth Birthday!!!!! Carl will be spending his Birthday in Heaven, but he will see all of our Beautiful Orange Balloons rising up to greet him on his Big Day!!!!! Sydney and Sam want to tie notes to our balloons, so we will probably do that, and put Carl's web address on the notes, then we will wait to see if anyone logs on that finds one of them!!!

Thank you all for your Prayers and Love that continues for our healing....We Love you all so much!!!!

Please remember all of our friends with children battling NB and other cancer or illness.

Love & Peace in HIM

Kelly & Tom
Bryan, Sydney
Sam & Angel Carl





Tuesday, December 7, 2004 5:49 PM CST

Good Evening this Tuesday!!!

We can't tell you how much we Appreciate all of you still checking in on Carcar's site, and leaving more notes of support and comfort. We still keep checking daily, and I hope to keep journaling, even though it will be so different now, and we will all feel this void in our hearts and souls, where Carl took up residency for so long. It will seem strange not writing about the things Carl is doing, and saying, and how he is feeling each day. It will be different writing about the kids without Carl included, as he was always the little comic star we all laughed about :0)

We have recieved so many Beautiful cards in the mail from so many family and friends!!! So many nurses that took care of Carl in Rochester have sent cards with notes of sympathy. All of you have the same thing to say about Carl, all of you share memories of Carl riding on that little tractor in the halls of St. Mary's :0) How he loved the freedom to just ride like the wind.... I can remember so many times waiting for him to get unhooked, so he could get on that tractor and ride!!! He brought smiles to many faces around St. Mary's, and that was such a joy to see!!! I can still see people turning around to see what was coming up behind them, and stepping aside to let Carl zoom around them :0) Thank you to everyone that has expressed your sympathy in every way!!! We appreciate everything you have all done for our family during this very sad time in our lives.

One week ago today, we went up to the funeral home to get Carl dressed. How Beautiful and peaceful he looked. It was easy to see that the little Carl we knew was not the Carl laying there. Our little energetic, crazy Carl is going full speed up in heaven. He is racing around and playing with all of his new friends that has welcomed him into his new paradise. He is in the company of Jesus, and all the Beautiful Angels that are taking care of him. I am trying to find peace with knowing that Carl is ok, and well away from us. I know he is, but it is hard convincing ourselves that he is ok without us, since we have taken care of him for so long. I try to imagine how Happy he was when he would zoom off on his tractor, perfectly content to be out visiting with other patients or hospital staff :0) Or when Carl would desert me (most of the time) :0) at the Donald House to go play with Andrew his very speical buddy, or to go visiting with Paula and Maggie or Helen in the lobby :0) He was perfectly Happy and enjoying the company of whoever he was with!!! I never really worried about him, because I knew he wanted to be away from me socializing and talking or playing with his friends. It was hard to keep him put, and everyone at the Donald House or the Hospital knows what I am talking about :0) So I try to imagine "That Carl" running around visiting in Heaven with all of his new friends, and Having the most Wonderfully Happy conversations, and playing so contently that he would not want to come back home.

Our sweet niece Jenny sent us an email to let us know that she feels Carl is ok. Jen heard one of the songs from the video show (at the church) on her way home from our house on Sunday. She felt it was more than coincidence as she was looking at Carl's button in her car when it happened. I too think it is a sign for us, and I am so glad you felt this Jen!!! I have been hoping and Praying for a sign, or for a sure feeling of inner peace. I have not personally received this yet, but I am hoping for something to ease my mind and heart. Carl was all about surprises, so I am sure he will give us a sign when we least expect it :0)

Last Tuesday was Carl's wake. I have never seen so many Beautiful flowers in a church before. There were a couple little trees lit up with lights, and a Wreathe that the Aunties and Uncles gave with little trinkets of Carl's tied all around :0) We have it here at home now, but it is missing the little loader and a little tractor :0) Sam insisted on having them off :0) The steady flow of people was so unbelievable, we were so Blessed to have so many people come that night. We felt very Loved and we knew that Carl was so Loved too!!! Amoung our friends and family that came to the wake, we were so Thankful that Tracy Fischer and Eric, Mark, Ryan, & Alex made the six hour drive to be there, and then they had to drive back for Tracy's work on Wednesday. Thank you guys for being there!!!! You are Special Friends and We Love you dearly!!! Also speical friends from Crookston Shelly & Baldy (Justin) & Ashleigh our dear friends from the Rochester Donald House made the trip from way up North!!!! We were so Amazed to look up and see you all standing there, sooo very Awesome!!!!!! It was good to see you all and I know Carl Loved you being there!!!! Then our Sweet friend Diane Donnarumma from Boston made the trip (Sophia's Mommy) I still can't believe she did that, all to be there for our family!!!! May God Bless all of your heart's for making these journey's to be there for Carl and our family!!!!! It means more than words can express how Thankful we are to have you all in our lives.

The Prayer vigil was so Beautiful!!! The opening song was so Appropriately "Angel's we have heard on High" How very fitting, to sing of Angles in the presence of Carl. We Prayed and then Sang "Away in the Manger" one of my favorite childrens Christmas songs. Then we spent some time sharing memories of Carl :0) How very Wonderful to hear all of the many memories shared by Father Ron, family, friends, and a sweet nurse Amy from Mayo. It was very evident that Carl has touched so many people, all in some very special ways!!! Mostly remembered was Carl's spirit, and Energy!!!! Carl was full of Life and he lived life to the fullest every day.... up until his little body could no longer keep up. He wanted so much to feel good, I remember on Friday the 26th, the day Carl was taken home to Heaven....I was up at the Hospital with him, waiting for his blood transfusions to be done. I hung up the phone from talking to Tom, and in our conversation, we talked about Tom and Uncle John going up to Grandpa Jims to grind feed, and they were taking Sam along....Carl asked me what was going on....When I told him Dad and Uncle John were going to be grinding feed, and Sam was going along, Carl laying there not feeling so good, he grumbled and expressed his disappointment.... he wanted to go with too...But he knew he was just not feeling quite up to helping this time. The boys loved to play together on the farm, and they loved to help Dad and Uncle John with chores!!!! Oh how I miss seeing them bouncing back into the house after getting so dirty and full of ground feed :0) His little head complete with a dusting :0)

The funeral service was equally as Beautiful. Father Ron's sermon was very good, and touched on how we just don't understand why these things happen, but someday we will put the pieces together. I was also so Happy to have Sara & Vic Hammer from Lakeland, and Mary & Molly Hollway from the cities in attendance. They are both NB families and good friends we have met along Carl's journey. We also were comforted by all the gals from the Rochester Ronald McDonald House!!!! I know Carl Loved you all being there!!!!! The church was brimming with Loving Family and friends. Most everyone followed the procession to the St. Patricks cemetery. After the final Prayer, we had a Ceremonial Dove release. Three doves were released one at a time, when Father said "In the name of the Father....In the name of the Son... In the name of the Holy Spirit" They were released by Sydney, Sarah, & Katie. Then the fourth Dove was to represent Carl's spirit. John Frank released the fourth Dove "Carl's Dove" What a Beautiful sight to behold.... The three doves circled around for awhile, then the fourth dove that was released flew up, then came back and circled around the crowd once again before flying off to make it's journey back to their home in Montivideo. These doves are homing, so they will fly back to thier home from hundreds of miles away. Tom talked to the man that brought the doves, a couple of days ago, and he said that all the doves were back home safely!!! It did take a couple of days for the last one to get home....On Thursday morning when we went into town to go back to church to pick up flowers, we saw a white dove flying over a barn near State Hwy 19 & Cty rd 5, I said "Look there is Carl" Who knows, it could have been one of the doves that was released??? We were very glad to hear they safely made their way back to their home!!! Another Beautiful Expression of Love was the Balloon release!!! Many Orange and blue Balloons were sent up to Heaven for Carl :0) Some of them got caught in trees :0) It made me remember the balloon release at Captain Dan days in Lucan (In Honnor of Laurie & Terry Ourada's son Dan who was also taken away too soon on Dec 29, 2001) this past summer. Carl held on to his balloon and would not let it go when we released all of the balloons :0) He wanted to let his go when he was ready to!!! So when no one was looking he let go of his balloon....Then the little stinker said "Look there's my balloon"....when it was soaring up into the sky almost out of sight!!!!

Tomorrow night we are having Laurie Ourada and John and Char Frank over to spend some precious time with us!!!! Laurie has promised Sam his very own Christmas tree :0) And he has not let her forget about it!!!! We were so Blessed to have them over one night before the wake. It was so good to spend some time talking together. The Franks have a very special place in our hearts, and we know that our little Angel is still watching out for John as he has had a special bond with John!!! We are so Blessed to have family and friends care so much about our well being!!! We don't know what we would have done without all of your Love and Support this past week. We had the luxury of having company every day, and we Loved having them all here with us!!! We enjoyed our time, and conversations with you all!!!!! And Thank You to everyone that helped us work on Thank You's!!!! We still have some to work on, as we are still getting cards and gifts in the mail every day!!!!!

We have had some people ask about donations to a charity in Carl's memory? What we are doing, is first of all to take care of our responsiblities from Carl's funeral, we then plan to donate to one or more of our favorite charitable NB funds we have been supporting the past couple of years. We also hope to use some of the memorial money to help us with A tribute to Carl's memory, we hope to get started with very soon!!!! We are very Excited about this idea we have and we think the community will be very Thrilled as well!!!! As soon as we get more of the plans and details in place, we will be unvailing our Plan of "Carl's Living Memorial" to all!!! This will be a way for us to give Tribute to Carl over and over again, and to keep his name Alive!!! We hope to Pay foward all of the Love we have received from our supportive community in Honnor of Carl!!!!!

The kids are doing well, I think they are managing very good in fact. Sydney has received so much support from her friends at school, and today she got a little surprise from Anne Bloedow ~ Three roses in a vase!!! She Loved it, and she feels very comforted by her friends at school!!! Sam seems to be doing just as well, he doesn't say much about Carl, he just goes on about his business playing and drawing tractors and pictures. I asked the kids if they think they would like to talk to a school counselor, but they both said they felt they were ok. I hope to find a community grief support group for our whole family. I think things will get harder at different times, and maybe some of grief the kids are feeling will surface later? I think right now, things have not completly sunk in for any of us??? We are so Thankful for all of your outpouring of Love and comfort you have all been giving, we can't Thank you all enough for keeping us in your Prayers!!!!

Please remember to keep all of our friends in your Powerful Prayers, as there are so many children out there still fighting this terrible disease. Please continue to Pray for a Cure for NB. Please also remember all of our other friends battling other illness.

We Love you all!!!!!

Kelly & Tom
Bryan, Sydney
Sam & Angel Carl


Thursday, December 2, 2004 7:55 AM CST

Krista Daniels wrote this in the Wabasso Newspaper last week ~

For the second time in less than a month, I must sit before my computer and pen my column about the untimely death of a young person in our area.

Four-year old Carl Thomas Robinson earned his angel wings last Friday evening after a valiant battle with Neuroblastoma, an aggressive form of childhood cancer.

Even though Carl is from the rural Franklin area, I have written a couple of times before about his battle and he shared a special bond with Wabasso’s John Frank, so many people in this area know of him.

Carl’s battle began when he was only 2 years old. After many months of treatment, he was declared to be cancer free and remained so until November of last year, almost 11 months. And then he relapsed.

He endured one more year of treatments, but also during that year, he had many care-free, pain free days on his family's farm, and for that we can be grateful.

He had just returned from the Children’s Hospital of Pennsylvania after undergoing a new, aggressive treatment for his cancer. So, although we knew this day may come, I think we were all in shock that it happened when it did and happened so quickly.

He spent one last holiday with his family, including extended family that had come home for Thanksgiving. In a way, that knowledge is somewhat comforting.

And even though he was only with us for a short time, he taught us many lessons. First of all, it was from Carl that I learned to be more patient with my own children. Like most mothers can probably attest, there are days when you have one nerve left and your children are stepping on it. During days like this I would just think of Carl and remind myself how incredibly lucky I am that my children are healthy and here with me.

He taught me that worrying about my kids’ actions and what other people think is so trivial in the grand scheme of things. When they are running and screaming through Wal-Mart and won’t listen to a word I say, I need to remember that at least they are there with me and the alternative would be so much worse.

Carl taught me to appreciate the small things in life, the things that really matter. Like when my children pick me weeds and dandelions and present them to me and ask if I will put them in water. Carl’s mom, Kelly, calls them "Mommy flowers" and they have become extremely precious to me.

One of Carl’s favorite movies was Shrek. He watched it numerous times through months of treatments. I know that every time I see anything with Shrek on it, I will remember Carl.

I’m sure he’s tearing around Heaven about right now on the fastest toy he could find when he got there. And if God has any pockets, he better watch out. Carl was famous for "lifting" things from nurses pockets.

And I know he is looking down on us and watching over the thousands of people he touched during his short life, with guardian angel wings on his back.

God Bless you sweet boy, we will all miss you.

Thank you Krista, so very Precious!!!


I would like to share with you the Most Beautiful Tribute to Carl!!! This was in the Rewood Gazette Yesterday, and brought many tears to our family as we read the piece. Thank You Troy for your touching words.

A Shining example until the end

Another Article in the Redwood Gazette~

Sad Hearts





Good Morning Dear Ones!!!!! Thank you all for your outpouring of Love and Kindness, we will never forget all that has been done for Carl and our family.

I have many thoughts and feelings to share, and I hope to continue journaling on Carcars site. I will update soon, about the Beautiful Celebrtation we all experienced the past two days, as we said GoodBye to our Precoius boy.... Right now I would like to share with you an email from a Dear Friend Mary Hollway, another NB parent we met this summer in Chicago. The Hollways are also from MN. and have become a great support for our family, and so many other NB families around the country. We keep in touch with other families through our NB list serv, and Mary sent an email this morning to share with all our families, the Beautiful day we had yesterday!!!

Mary wrote:

Hi All,

I wanted to share with all the beautiful day Molly and I had today
celebrating the life of Carl Robinson.

We made the trip to Franklin MN, a quaint little faming town about 100 miles
from Minneapolis, in about 1 1/2. It was a beautiful day, the first day of
full sunshine in weeks. As we drove into town, you could tell life had
stopped for the day to celebrate Carl. The church was packed 3/4 an hour
prior to the service and as we entered the church, we were greeted by
Kelly, Carl's mom. We hugged tightly and we both cried! Molly was very
apprehensive as to how she would feel, and if it was OK to cry hard in
public. We marched to the front of the small church to see Carl adorned in
his Sunday best and surrounded by "Orange " items and his favorite stuffed
animals. He was angelic and we cried openly to see our sweet little friend
who's spirit was now with his maker.

The service was very nice but incredibly sad to witness. There were three
families for our list at the funeral. All the way from Boston, Diane,
Sophia's mom, had made the trip for Kelly and family. The Hammers, Sara,
Vic and baby , Mary were there from western Minnesota, and Molly and I.
Kelly was overwhelmed to see us all there, and it was so special to see one
aother again.( I certainly would have preferred other circumstances though!)
We had all met in Chicago! Thanks to Pat Tallgun!!

The highlight of the day was the cemetery. A procession of at least 100
cars followed one another to the cemetery. It was a newer cemetery, and
fortunately insight of the Robinson Farm. We gathered under the tent and
listened to the priest give one last prayer. After the prayer, four
beautiful Doves were released. It was breathtaking! They circled the field
and a few seconds later off went the 100's of Balloons...mostly orange, up
to the heaves with Carl. It was probably 20 degrees with the wind, but no
one seemed to leave. Carl's short life left an incredible impression on so
many.

We all went back to the Church for lunch, and I finally asked why everyone
had so much Orange on? The pall bearers wore bright orange ties, all the
relatives painted their nails orange, there were little orange ribbons
everywhere!! It was Carl's favorite color, and how fitting that even the
roses were orange.

As Molly and I drove home feeling completely drained, I felt immensely lucky
to have met Kelly and the Robinsons. Even though Carl's life was so short,
what a huge impact he had on so many. I was so happy to see the Hammer's
again and hear Daniel was 2 Years NED, and dear Diane, she was so faithful
to come all the way from Boston to see her special friend.
Thank you for this wonderful list and thank you for special people like the
Robbinson's. Dear Carl may you rest in peace now free for this awful
disease and watching over all of us.... and probably wearing "Orange"

Love you Kelly, Tom, Sydney, Sam and Bryan!!!

Mary and Molly Hollway

Thank you Mary for sharing your Loving thoughts, we will always treasure your friendship. Thank you Mary, Molly, Vic & Sara with Baby Mary you have been a true friend from the first day we spoke on the phone about bringing Carl to New York, and Thank You to Diane who traveled so far from Boston to be here with us, we were so Amazed to see your smiling face and so thrilled to have you hear with us!!! We have many dear memories with you, and Sophia.... Carl is watching all of us now, and is with all of the other little Angels that went before him....I know he will be close to Jesus up there, I am sure he is hogging Jesus' lap :0) I will ask Carl to watch over Molly, Daniel and Sophia, and all of our NB warriors!!! GOD BLESS YOU ALL!!!

Thank you to EVERYONE that made our Celebration Of Life so special for Carl!!! Thank you to everyone that came to be with us, and to those of you that could not be with us, we know you were with us in thoughts and Prayers!!! We could feel all of those Prayers, as we did manage to find a sense of Peace with Carl leaving us...We know the Prayers were what was holding us up in this difficut time. Thank you to Father Ron for for the most Beaufitul Service we could have imagined... Thank You to all of the Church members for all of your help with everything... to those that served lunch both at the wake and after the funeral We are So Appreciative!!! It was so very nice how you had everything so perfectly orchastrated, and flowing so Beautifully!!!

Thank you for stopping by today, and for all of your Prayers that continue to give us strength today......

With Love and Hope

Kelly & Tom
Brayn, Sydney
Sam & Angel Carl


Tuesday, November 30, 2004 8:08 AM CST


Obituary in the Redwood Gazette, Redwood Falls Mn.

Carl T. Robinson

Carl T. Robinson, age 4 years, the son of Tom and Kelly Robinson of rural Franklin, died Friday, November 26, 2004. Many loving family members were present at the Redwood Area Hospital when Carl's two year battle with neuroblastoma cancer ended.

Mass of Christian Burial will be held at 10:30 a.m. on Wednesday from Sacred Heart Catholic Church in Franklin with burial at St. Patrick's Birch Cooley Cemetery, rural Franklin.

Visitation will be held at Sacred Heart Catholic Church on Tuesday evening from 4 until 8 p.m., with a prayer service at 7. Visitation will continue at the church on Wednesday for one hour prior to services. The Nelson-Martin Funeral Service of Redwood Falls is handling the arrangements.

Carl Thomas Robinson was born December 28, 1999 in Redwood Falls, a son of Thomas and Kelly (Greer) Robinson. He lived with his family in rural Franklin. Carl was a big Shrek fan, and also a fan of Bob the Builder who had taken special time to personally contact Carl. He also thought riding in the tractor, farming with his uncle Chuck, was a good time. Carl and his brother, Sam, were always outside with some sort of building project.

In 2003, Carl was named Redwood Falls "Person of the Year" by the Redwood Gazette. He was Honorary Chair for the 2004 Redwood County Relay For Life and this year year carried the torch for Morton in the Renville County Relay for Life.

Carl is survived by his parents Tom and Kelly Robinson of rural Franklin; big brother Bryan Creamer (age 17) of St. Paul; sister Sydney Bladon (age 11) at home; and his brother Sam Robinson (age 6) also at home. Other survivors include his paternal grandparents George and Phyllis Robinson of Morton; maternal grandparents Bill and Dorothy Greer of Redwood Falls; godfather Chuck Robinson of Morton; godmother Janet Welter of Morgan; aunts, uncles, cousins, and a host of friends.

Carl Thomas Robinson Celebration of Life

Wake ~ Tuesday November 30th 2004
4:00 to 8:00pm Prayer Service 7:00pm
At Sacred Heart Catholic Church
551 2nd Ave E.
Franklin Mn. 55333

Funeral Service ~ Wednesday December 1st, 2004 ~ 10:30am
Visitation one hour prior to service
Sacred Heart Catholic Church
551 2nd Ave E.
Franklin Mn. 55333

Out of town guests welcome at the Morton Inn. Morton Mn.
400 Kokesh Dr.
Morton Mn. 56270
507-697-6205

Hotel Discount for Carl's funeral guests.

For directions or Information Please Call the Robinson Farm 507-557-2941

Or 507-430-2445 Tom's Cell phone
or 507-430-2446 Kelly's Cell phone

Tom and I would like to Thank EVERYONE for all of your Outpouring of Love and Support at this very difficult time. We have been surrounded by family and friends ever since Carl passed. You are holding us up, and making this terrible tragedy a little easier. I just don't know what I will do when this is all over, we will be lost and go through people withdrawls :0) We Truly Love you all so dearly, and Appreciate everything that has been done to help our family as we grieve for our little carcar. We realize that this has affected all of you too, not just us as parents feel this deep void in our lives. Carl had touched soooo many people in sooo many ways. I was always amazed by all the many people around St. Mary's that knew Carl :0) Not only the Sweet nurses that we Always Loved so much, but many people he went out an met on his own :0) I can recall many times going with him, (Carl peddling his little tractor) around the halls of the Hospital...Maybe we would be heading to the cafeteria, or the gift shop :0) And people along the way would greet Carl by name :0) And I didn't even know who they were? LOL

Carl has touched so many lives, even those that knew about him but never met him. He was a very special child and we feel very Blessed and are so Proud to be his parents. It will be so hard to live the coming days, weeks, and beyond without his little laughter, and smile to lighten our hearts. He has made a mark in our hearts forever!!!! Yesterday Tom and I along with Sydney, Auntie Janet and Auntie Holly, went up to the funeral home to dress Carl and get him ready. When we walked in and first saw him laying on a table (covered with a hospital gown) it about took our breath away. He looked like a little Angel laying there :0) So Precious and so Beautiful..... We dressed Carl, put his little ring on his finger that he liked to wear, and carried him to the casket and got him arranged comfortably as if he were sleeping. We brought a special pillow that he will rest on.... It was a little throw pillow he used to grab and sleep on when he would climb in between Tom and I in our bed (nearly every night) :0) We wanted him to look natural and peaceful the way remembered how he was sleeping peacefully. Carl will be covered and comforted by a very Special blanket that the Frank Family gave to Carl last year at John's benefit, when we met John and their family the first time :0) We felt very good about seeing Carl yesterday, it was healing and meaningful to all of us.

We will soon begin to bring things to the church to set up. We have so many pictures and some chosen items of Carl's that had special meaning to him. We have been enjoying all of the planning we have put in to his "Celebration of Life" and it has been so good to have our family and friends here with us to share in all of the memories we all hold so dear. We feel so confident that Carl knew how much we all Loved him!!!!! And he Loved Life and all of us with all his heart!!!!! He did live each day to the fullest, even when he was not feeling well, he still wanted to be included in what was going on and he would express wanting to go along or get up, but realized he was too sick to try. How very sad that was to witness, knowing how Carl had bounced back so many times so quickly and would get up and take off, or get on his little bike and ride for all he was worth!!!! :0)

Thank you all for the Wonderful food you have been bringing over, and all of the many groceries that will help us out so much!!! It has been so nice to not have to cook or look very far for something to eat!!! Please know that we Appreciate all of this from the bottoms of our hearts!!! God Bless you all we Love you so much!!!!!

We look forward to seeing many of you later today, and tomorrow, and for those that will not be here, we know that you are with us in Spirit and Prayer!!!

Love and Peace

Kelly & Tom
Bryan, Sydney
Sam & Angel Carl


Saturday, November 27, 2004 7:51 AM CST

Carl Thomas Robinson Celebration of Life

Wake ~ Tuesday November 30th 2004
4:00 to 8:00pm Prayer Service 7:00pm
At Sacred Heart Catholic Church
551 2nd Ave E.
Franklin Mn. 55333

Funeral Service ~ Wednesday December 1st, 2004 ~ 10:30am
Visitation one hour prior to service
Sacred Heart Catholic Church
551 2nd Ave E.
Franklin Mn. 55333

Out of town guests welcome at the Morton Inn. Morton Mn.
400 Kokesh Dr.
Morton Mn. 56270
507-697-6205

Hotel Discount for Carl's funeral guests.

For directions or Information Please Call the Robinson Farm 507-557-2941

Or 507-430-2445 Tom's Cell phone
or 507-430-2446 Kelly's Cell phone
**********************************************************
At 8:45pm Friday November 26th, Our Precious son Carl flew to Heaven with Jesus and all of Heaven's Angels. Carl was without pain, or suffering, he drifted off to sleep peacefully in his Daddys Loving arms. The tears are flowing as I type this journal that I have feared and dredded from day one, of carcar's website, and journey. It still does not seem real. It actually feels like a bad dream we will wake up from, and go on... Carl is not here with us, but his Spirit remains embedded in our Hearts and Minds. How could we forget a little boy that has touched so many lives and Hearts in such a short life... his memory will live on Forever!!!!!

Carl had a very nice Thanksgiving day at Auntie Sheila & Uncle Johns. He got to see most of his relatives, and enjoy time with his cousins that he adored so much!!! We visited Grandma & Grandpa Greer and my Sister Holly's family in the afternoon!! Carl even showed some interest in eating, although he wouldn't try anything. He slept pretty good through the night, but then woke up early with some pains. We gave him morphine a couple of times, over a short period of time. Tom brought Carl to the Redwood Falls Hospital to check his blood counts, as we expected his platelets would need transfusing on Friday. He did get platelets and red cells as well...they were also low. Tom thought Carl was pretty good all day at the Hospital, and he even took a couple of bites of pizza for lunch!! I later came up to the Hospital after work, and stayed with Carl until he was done with his transfusions.

Carl slept most of the time I was with him, but Tom had gave him another dose of Morhpine right before I got there. When we got done about 4:00pm we left to go home, and I needed to give him more morphine when we got to the car. When we got home, Carl crawled back into our bed and rested for awhile. I started his tube feeds to get some nutrition in him, and he rested. He continued to get more pains, and his tummy was looking more distended, so I shut off his feeds to let him rest. I had planned on taking Sam, & Bryan to the movies, and we were going to meet cousins Jenny, Jessie, Jackie & Uncle Denny. Tom was going to stay home with Carl to let him rest. Carl's pain was increasing after we left, and Tom was getting concerned about not controling his pains. His tummy appeared to be expelling some air through his g-tube, so he called the ER at the Hospital and talked to Nurse Heather about Carl's situation. She knows Carl and has helped us before with his g-tube when it had fallen out one time, so she was very helpful. Tom tried to draw out some fluid and air from Carl's tummy with a syringe, and it did help to relieve some of the pressure. Then Tom decided to bring Carl into the Hospital, to see if they could help make him more comfortable with his tummy.

The doctor on call was waiting for them to get there, and talked to Tom about Carl's condition. Tom realized that he did not have much time left at this point. The nurse sent for someone to find me at the movie theatre. I flew out of the theatre and got to the Hospital within minutes, and as I was walking down the hall the nurse came to tell me that Carl had already passed. It was only a short time before I got there. Tom held him and they helped him breathe with some oxygen, and Carl gently drifted off peacefully without any distress. It was a Blessing that he went so peacefully.

After I got to them Carl looked like he was peacefully sleeping in Toms arms. I held Carl then for awhile, kissed him and snuggled with him. Then Uncle Denny & the girls and Sam & Bryan came to the hospital. It was very difficult telling the boys about what had happened so unexpectedly this evening. Bryan came in the room and saw Carl, and he held him for a little bit too. I think that helped him to tell him how much he Loved his little buddy. Sam seems to be doing ok, but we will need to give him lots of extra attention and Love and try to help him talk about his feelings too. We stayed at the Hospital for a couple of hours, and more relatives came to offer support. My sister Holly & her Husband Terry came too. We all spent alot of time hugging and crying.

Sydney was in Texas with Her Daddy for the weekend, so she did not find out about Carl until this morning. We phoned Jeff, and he gently told her about her little brother. Then both Tom and I talked to her too. She will be coming home later this evening, Jeff will be driving her out to the farm after their flight gets in. I know Sydney will be a big support help for both Bryan and Sam, she is such a good girl, and she is so strong for a little girl.

Today Tom and I will meet with the funeral director, and try to make plans for Carl's service. We are not sure of any dates yet, we are thinking about next Tuesday or Wednesday to allow for making plans and for travelers. As soon as we know more we will update on our plans.

Thank you all for all of your Love and Support, and for all of your Prayers that have kept us so strong!!!! We Love you all and we Cherish your presence in our lives!!!

God Bless you all

with tears,

Tom & Kelly
& Family


Thursday, November 25, 2004 7:03 AM CST

HAPPY THANKSGIVING!!!!!! To all our Dear Family and Friends!!!!!

Thank you all for your Loving Support that you have given our family so faithfully for so long. On top of our Thankful list, is all of you that have been on this journey with our family for over two years!!! Your steady Encouragement, and Prayers of Hope have given us strength to go on with confidence in HIS Plan so many times... You have never given up on Carl or our family... and for all of your Unending Love we Give Thanks, today and Forever!!!!!

We wish you all a most Beautiful Thanksgiving Day in the Lord, and a Wonderful Holiday weekend with your families and Loved ones everywhere!!!!

Our family will be getting together at John & Sheila's for dinner today!!! Grandma Phyllis will also be spending the day with us, so that will be very special!!! We will then visit my Mom at Woodale, and My Dad & my Sister Holly & her family will join us for Pumpkin Pie this afternoon!!!

We are hoping Carl will feel well, and have a fun day with his cousins and family together today :0) He Loves to be with his cousins, so we expect that will perk him up if nothing else can!!! He has been about the same, mostly resting on the couch or in my bed. We have continued to give him Morphine about every three or four hours, but last evening and through the night, he didn't request it as often!! I asked him if he needed pain medicine several times, and he said "no" so I told him to let me know if he has any pains. We have kept his tube feeding running pretty steady for over 24 hours now, and have his rate up to 40 now. The bruising around his eyes is gone and he looks better in his face. As for his tummy??? We are not sure if his tummy seems smaller, we keep looking at it and trying to decide if it does, but it is so hard to tell??? We don't think it has gotten bigger though. We are thinking possibly that Carl may be feeling a little better??? We Continue to Hope and Pray that his condition gets better, and we are allowed more time.

Tom said that Dr. Anderson told him from an email from Dr. Maris in Philly, that Carl getting in for the MIBG treatment was close to being under the gun with how his liver situation was getting. So his liver disease was progressing rapidly in the couple weeks and days up until he was admitted to the hospital for the treatment. He was very near being unable to get the treatment. We are Thankful he did get the treatment when he did, and we are Praying that it did help the NB spots, and in the liver, and things will settle down and stabilize yet. Carl's situation is very seriouse right now, it could go either way, for the better or the worse. Dr. Anderson told Tom that we needed to prepare ourselves for what could be happening??? As much as we do understand Carl's condition, we still hold on to Hope just as strongly!!! And we are Praying for his Miracle!!!

Thank you all for stopping by today, and for all of your PRAYERS that we feel and know are being sent up and stormin Heaven so strong for Carl!!! GOD BLESS all of you, and we Wish you a Beautiful Thanksgiving Holiday Weekend!!!!

Love & Prayers

Kelly & Tom
Bryan, Sydney
Sam & Carl


Wednesday, November 24, 2004 6:04 AM CST

Good Morning to everyone!!!

Thank you for all of your notes, emails, phone calls, cards, Prayers and Love!!!

Carl's appt. yesterday went ok. Dr. Anderson saw that Carl was not his usuall Happy, eregetic, busy self :0(
His blood counts were good, (was transfused Monday). Carl's pain continues steady, so we have a new precription for a higer dose of mophine to use. We also have begun to start tube feeds with a pump again. Carl has not eaten more than a few bites for about a week, so we think this will help get his tummy working and feeling better again! A return appt. was set up for December 23rd, to review Carl's counts and determine if he will need his stem cells back. He will have counts checked locally twice a week, and transfusions as needed. Carl's liver is enlarged, and he is in a very serious situation. However his lungs are clear, he has good color, and there is hope that things will get better. We are holding on to hope, and we are Praying very hard that Carl will feel better and receive that Miracle that we are all Praying for!!!

We started his tube feeds last night thanks to the Wonderful staff at Home Medical and our Sweet neighbor Cecilia, that brought over a pump, bags, and formula on her way home from work!!! Thank you and God Bless!!! We started to run his feeds at 20 overnight. We stopped it once to give him a little break, but later turned it on again, and it has been running steady ever since. We just bumped it up to 30 and hope to keep it running all day. He seemed to wake up feeling a little better. Tom and I both woke up feeling very good, and with peace about Carl...THANK YOU FOR ALL OF YOUR PRAYERS!!!!! We know this is a very difficult time of the year for all of this to be going on, but we will keep our spirits High, and stay Hopeful!!!

Thank you again for all of your Loving support!!!!! We Love you all so much!!!!!

Uncle Chuck will be staying with the boys today while Tom and I go to work, so I am sure Carl will enjoy that!!! Thank you Uncle Chuck for all of your help!!!!!!!!

Have a Great Day in the Lord, we will update more later!!

Love & Peace

Kelly & Tom
& Family


Tuesday, November 23, 2004 4:44 AM CST

Good Morning to all!!!

Thank you all for your Prayers as Always!!!

Tom & Uncle Chuck are off with Carl to Rochester for his first follow up since the MIBG treatment. Carl is still having considerable amount of pains, and has not eaten much for about a week now. His liver is still enlarged, and his tummy feels very firm. We are getting concerned about all of this, and Praying things start to get better soon. Carl's counts were low yesterday, so he got both platelets and red cells in Redwood Falls.

We also have had a bought of the stomach flu going through our house over the weekend and last night. We believe Carl got hit with this as well, as last night he was vomiting too. It has been a miserable few days, but we are trying to keep pedaling along. We did get Grandma Phyllis out of the nursing home on Sunday, and brought her home for supper!! We think she really enjoyed her time at home, and it was fun to see the kids playing like they always do at Grandma's house :0) Including Carl :0)

I will update more after we hear back on Carl's doctors appt. at Mayo. Thank you for checking in, and Please say some extra Prayers today for Carl, as he is trying so hard to feel better.

Love & Prayers

Kelly


Saturday, November 20, 2004 1:21 AM CST

Good Morning to Everyone!!!

The boys are Happily back home tonight!!!

Tom and Carl left the Hospital about 11:30am to head to the Philly Airport. Tom was telling me that they went out the front door of the Hospital and started looking for a cab. They crossed the street and asked woman where a good place to catch a cab would be, and she suggested down the street a block and a half. So they started down the street, Tom pushing Carl's stroller and dragging his bag on wheels behind him. Being the Savey NY traveler that Carl is, he knew exactly what to do :0) Tom said he sat in his chair with his finger in the air!!! A cab driver spotted Carl and whipped across two lanes of traffic to pick them up. He told Carl "You know how to hail a cab don't you!! "I stopped for YOU not your Daddy" :0) I can just picture Carl, feeling yucky, but still thinking :0)

Thanks to Uncle Clair and Auntie Joy for picking the boys up from the airport, and meeting me with them!!! We Appreciate you driving through all that crazy traffic in the rain!! And Thanks Auntie Joy for sharing your Pop :0)

Carl started right in showing Sam all of his treasures he brought home!!! He could hardly lift one of his bags, I caught him hauling a heavy one through the house to the living room, and quickly grabbed it away to help!!! Carl looks very weak and tired :0( He has lost some weight, and has racoon eyes. His right eye is very black and blue looking. His tummy if quite enlarged and distended :0( I was very shocked to see him this way from a week ago. I realize he has had a tough week from the MIBG treatment, and his liver has been very compromised, from not only the cancer, but from the MIBG working on it too. Tom thinks his tummy appears smaller since yesteray?? He does think he looks better in terms of energy though, and it was Great to see him playing and smiling with Sam and Sydney!!

I think I expected Carl to breeze through this treatment, and recover immediately?? I know I have read about other children coming out of MIBG treatment differently?? This coming week Carl will see Dr. Anderson at Mayo on Tuesday for a check up and labs. We will need to check his counts locally on Monday, because his platelets may need transfusing already. I was hoping to get Carl (he was too) started in Head Start school on Monday, but we probably will wait now until the following week, with the Thanksgiving Holiday break this week, and his appointments and all. Carl will need to be seen once a week in Rochester for labs and check up. His counts will bottom out in about four weeks from now. We are hoping he will not need to get his stem cells back, but we will see how he recovers on his own and go from there. We will be working closely with Dr. Maris in the furture for Carl's next treatment plan.

Thank you all for your EVERY PRAYER, and all of your AWESOME Support you have offered during this past week!!! We are so Very Blessed to have you all along with us on this journey we must travel. We are hoping Carl will feel up to keeping his commitment to help sell PopCorn at Turkey Bingo tomorrow night :0) Last week at our 4H meeting Carl raised his hand to volunteer when they were asking for helpers to take the evening Bingo Shift!!! So if any of you are gambling for a Turkey in Morton tomorrow night, we may see you there!!!

How precious is Your unfailing Love!
The children and the adults,
all take refuge in the shadow of Your wings.
They feast on the abundance of Your house;
You give them drink from your river of delights.
For with You is the fountain of Life;
in Your light do we see light.
Psalm 36: 7-9

Love to all

Kelly & Tom
& Family


Wednesday, November 17, 2004 5:39 PM CST

Thursday PM update ~

Carl and Tom will spend one more night in Philly and plan on heading home tomorrow afternoon!!!

Today Carl's radiation level was considered safe. His foley cath was removed. Carl continues to have pains, and is still getting Morphine to help. He also has had a couple of fevers, but they resolved quickly with tylenol. Carl had labs drawn this morning, and his platelets were low, so he is getting a transfusion shortly. A MIBG scan was done earlier, to look at all the uptake. This will be a base to compare future scans to. Tom saw the scan, but said he couldn't tell much, it just looked very highlighted everywhere??? He should see Dr. Maris tomorrow before they go, and get a full report, and have questions answered as well. Tom said Carl is feeling a little better, but still is pretty tired and has just been resting all day.

Tom and Carl had a very special visitor today!!! Alex Scott's Mom Liz, and Alex's little baby brother :0) Tom was so Thrilled to meet Liz, and of course I was sorry to not have been there :0( I am sure we will be making several more trips to Philly and I hope to get the Pleasure of meeting the Scott's maybe next time!!! Liz surprised Carl with a gift bag of wonderful things !!! Thank you so much Liz for making Tom and Carl's day!!!!!

Tomorrow will be a big day getting Carl back home!!!! We are all so Excited and Anxious to see them both and give them Hugs and Mooches!!!!!!

My lips will be a glowin :0)

Thanks everyone for checking in and we will update more after we get these radio-active boys back home!!!!!

Love & Peace

Kelly & Family

*************************************************************



Good Evening this Wednesday!!!!

THANK YOU ALL for your Wonderful notes and Beautiful words you have shared with us!!! We Love to read your encouraging entries!!! Your Happy notes have cheered us during this difficult week, and We Thank you for that!!!

This has been a very difficult week, but when ever I think about the road being so hard, I think back to this little story I have shared on Carl's site in the past!! This is my favorite of favorites, and I wanted to share this one with you all again!!!!!

***********************************************************
The Road of Life

At first, I saw God as my observer, my judge, keeping track of the things I did wrong, so as to know whether I merited heven or hell when I die.

He was out there sort of like a president. I recognized His picture when I saw it, but I really didn't know Him. But later on when I met Christ, it seemed as though life were rather like a bike ride, but it was a tandem bike, and I noticed that Christ was in the back helping me pedal. I don't know just when it was that He suggested we change places, but life has not been the same since.

When I had control, I knew the way. It was rather boring, but predictable it was the shortest distance between two points.

But when He took the lead, He knew delightful long cuts, up mountains, and through rocky places at breakneck speeds. It was all I could do to hang on!

Even though it looked like madness, He said, "Pedal!" I worried and was anxious and asked, "Where are you taking me?" He laughed and didn't answer, and I started to learn to trust. I forgot my boring life and entered into the adventure, and when I'd say, "Im scared," He'd lean back and touch my hand. I gained love, peace, acceptance and joy; gifts to take on my journey, My Lord's and mine.

And when we were off again, He said, "Give the gifts away. They're extra baggage, too much weight."

So I did, to the people we met, and I found that in giving I received, and still our burden was light.

I did not trust Him, at first, in control of my life. I thought He'd wreck it; but he knows bike secrets, knows how to make it bend to take sharp corners, knows how to jump to clear high rocks, knows how to fly to shorten, scary passages. And I'm learning to shut up and pedal in the strangest places, and I'm beginning to enjoy the view and the cool breeze on my face with my delightful constant companion, Jesus Christ.

And when I'm sure I just can't do it anymore, He just smiles and says...

"Pedal."
***********************************************************

I have talked to Tom many times today, and I am so Happy to report that the boys may get to come home tomorrow night!!!! Carl's radiation level was 15 this morning. Thanks to a helpful tip from a dear friend Shayne Thomas, Christi's Dad :0) Tom has changed Carl's sheets a few times today, and we believe that has helped the radiation count go down faster!!!

Carl still is having pain, but it is being managed by IV morphine on a regular schedule. Tom thinks it is getting somewhat better? Carl's activity level is practically nothing....He told Tom "I just can't wake up" Bless his dear little heart. He is feeling the effects of the MIBG working on his NB and we think it has knocked the wind out of his sail in the process. He has not eaten much, but this is also a normal side effect for a couple of days. One of the Doctors told Tom that usually the second day is the worst, and things should imporve from there!!! So we are expecting Carl to be feeling better by morning, and to hopefully be perking up as well!!! Tom told Carl that they may be able to go home tomorrow, and to that suggestion he got a raised eyebrow... but still too tired to get up and Celebrate :0( I personally think this is GODS way of keeping Carl calm and managable during this trying isolation period!!! Knowing perfectly well what Carl's normal level of performance can be, I was very worried about how we would keep him confined and stationary during this treatment. So this may be a little Gift from above that we don't fully realize!!!

One other little concern today was Carl having a small temp. They treated him with Tylenol and a dose of Roseffen and he will get another dose of antibiotic tomorrow morning. They were unable to culture his line, due to his blood being radio-active still. I am not sure what will be done, it is possible that he will get culutured when they get back home? Or if his fever remains normal, then maybe nothing will need to be done for a culture?? The nurse did say that his urine had some sediments in it, so it is possible that he has a little bladder infection going on from the catheder? We Pray that his fever stays away and he is feeling energetic and back to his Crazy Carl self by tomorrow!!!!!!

Thank you all again for looking in on Carl, and for all of your POWERFUL PRAYERS!!!!!! They are being heard, and we can feel a storm of Peace & Comfort coming straight from above!!!!! God Bless you all, We Love you all Dearly!!!!

Until Tomorrow ~ With The Grace from HIS Love

Kelly & Family


Tuesday, November 16, 2004 7:41 PM CST

Hello to all our Precious family and friends!!!!

It means so much to us to know that you are all out there checking in on Carl, and keeping him lifted up in Prayer as you do so faithfully!!! I am Amazed to learn daily of all the wonderful people that I didn't realize do follow Carl's journey!!! We see the number of hits on Carl's page growing steadily, but don't really fathom all of you out there that care so much about this little guy!!! Thank you all for your dedication, and Supportive Love that truly gives us the strength to march on!!!!!

Carl is doing soo Well!!!!! I am so Happy that he is managing so good in his isolated bed!!! Tom sounds like he is holding up Wonderful too!!! I am so Proud of the both of them, I can tell you all one thing for sure...... They are both my HEROS!!!!! Carl went down to sedation this morning to have his foley cath placed, and didn't fight a bit, he was not fond of the idea, but he did not resist sedation or fight at all. What a trooper!!!! When the nurse was putting Carl to sleep, she asked him what he was going to dream about :0) He told her Mickey Mouse :0) So when he woke up, she went and found him a little surgical cap with Mickey Mouse on it to wear!!!

The MIBG infusion started about 1:40pm this afternoon. It took about an hour and a half to infuse. Tom said that Carl slept through the whole process, and did not complain much of any discomfort when he was awake!!! He is continuing to get Morphine on a regular schedule for awhile to help with tummy pains, and Dr. Maris said his pains should go away within a week!! I am sure the pain meds are helping his mood as well, he is not as cranky and whiney. The child life staff is keeping Carl busy with legos and other activities!!! Tom was able to get out of the room for a short jaunt to McDonalds which is downstairs in the Hospital!!! Lucky for Carl, he can get those Chicken Nuggets daily still!!! Overall things seem to be going well for the boys!!!! I am very Proud of these guys, but miss them terribly!!!!

On the home front we are doing very well too!!! We went to Sydney's reading conference tonight and I was so pleased that she is doing very well in her class!!! Sam came with and was acting so shy in front of Sydney's teacher :0) It is so nice to be here with the kids, and actually make it to a childs conference and feel like a concerned, supportive parent!!! It is also a joy to be able to go over their homework each night, and help with spelling words, and reading!!! They are surly appreciating Mom being here with them this week, It is a good feeling both ways!!!

Tom said he is wearing a Geiger counter (to measure his level of radiaion) and last time he looked it was over 200 something??? He said that Carl's count was about 31. A radiology guy took a reading a certain distance from the door. He said when Carl's level was down to a 7 (I believe?) he would be allowed out of his isolation area. He also told Tom that he is not a Doctor, but he thought that the longer it took for the radiaion level to drop, the better it probably was??? Meaning that the radiation was working longer in his body?? Which makes sense to us too. So we are not in any hurry to get Carl out, as long as the MIBG is working like crazy to rid his body of those nasty NB cells!!!!

The boys are settled in for the night, and we Pray that tomorrow goes as well as today did!!! It certainly makes my worries less, knowing that these boys are not climbing the walls and going crazy in there!!!

THANK YOU LORD for Helping Carl and Tom through these difficult days, and for keeping my peace of mind while away from them this week!! Please send your Angels to Guard over Carl and stay with him to ease his days during this treatment. He is such a good little boy, he never questions what we ask him to go through, he just trusts us with his life, to make these decisions with your guidance. He is so Precious to all of us, as he has touched so many lives throughout this journey. He has shown us YOUR Love in so many ways, and reminded us that You have a very speical plan for him in the works. We may not understand right now, but we do know that Carl is in your hands.

Thank you for keeping us so strong with your Prayers!!! Please also remember all of our friends battling cancer and other illness.

By God's Grace

Kelly & Family


Monday, November 15, 2004 7:02 PM CST

Good Evening this Monday!!

Carl's phone number at CHOP ~ 267-426-4301

The guys had a very nice weekend!!! They visited the Betsy Ross House, The Liberty Bell, and went to the Philadelphia Zoo with Freddy & Patti our sweet cousins from NY!!! They enjoyed their wonderful company yesterday and it sure helped to have some quality free time, before getting checked into the Hospital today!!! Thank you Freddy & Patti for making the trip to Philly to spend the day with Carl and Tom!!! It sure meant alot to the boys spending the day together with you yesterday!!!!

Today I was talking to Tom several times earlier, and I could hear Carl crying in the background. Tom said Carl's tummy has really be hurting him again :0( He put Carl on the phone, and I tried to explain to him that the reason he is there, is to help make him feel better, and that after his treatment his tummy pains will be better. Carl then started sobbing :0( It about broke my heart to not be able to hold and kiss him... Tom got back on the phone then, I suggested he check with the nurse to see about getting him some pain medication. Up until now, we have only been using tylenol or ibuprofin. There is no reason why he should have to be in that amount of pain!!! So the Nurse did get him a dose of Morphine, and that did help a lot. The next time I talked to him on the phone, he was happily sitting in a window watching a skid loader working outside on the street :0) He was talking to Dad, telling him that is what he wants to do when he grows up :0)

We do believe that his liver is causing the pain. The Nurse Practitioner Pat could feel his liver, so it has started to become enlarged. She also reported to Tom today that Carl's liver enzymes were elevated. Up until now all of his levels have been within normal range. This elevation has caused some problems with enrollment on the MIBG protocol. She first came in the room and told Tom there was a Problem...All Tom could think was that we were not going to be able to go ahead with treatment. What will happen is more paperwork, and a consent to go ahead with the treatment. He will still have the treatment, and she said that it was very needed at this point!! Along with Carl's liver funtions being elevated, his blood counts have plummeted too. He is currently getting both red cells and Platelets, also a requirement (high enough platelet count) to qualify for the treatment protocol.

They are settled in to the room they will spend the next three or four days in. Tom said it is covered with plastic everywhere. As we knew before, everything that Carl touches (after treatment starts) will need to be disposed of. It sounds like Tom can keep things on the other side of the room, and that will be ok, such as Carl's stroller, and his bag. Once the infusion takes place, Carl will need to stay in bed (with lead sheets around his bed area) until the radiaion level is safe enough to come out. Tom will be doing all of Carl's cares, and this will include giving him doses of iodine (Lugos) about 10 times a day? (I think he said) The nurses have Carl's IV pole set up close to the door, so they can administer meds easily without going into the room. They strung enough tubing from the pump to reach to Carl's bed. He will be sedated briefly in the morning to have a foley catheder placed, and then the MIBG Injection will be given. There was a question about the volume of Carl's stem cells in storage, and that is all settled. There is enough to allow the Highest dose of MIBG that Dr. Maris wanted to give Carl! So we are very Happy about that!!! If there were not what was needed, then he would have only got a smaller dose, but we are glad he will get the higher dose, in hopes that this will work hard to kill those cells all over his body, including his liver.

Carl also was able to have the blood drawn for the TX vaccine study!! So that is done, and being shipped off to Dr. Heidi Russell to begin working on his cells to create a vaccine to hopefully be ready for him in about four to six months!!! With Carl's low counts today, Tom didn't think this helped him very much, he said they took many tubes of blood to be sent!!! Hopefully the transfusions tonight will help boost his blood back for awhile!!!

I just checked with Tom again, and he said Carl is getting his red cells right now and sleeping peacefully. He did get another dose of Morphine tonight and Carl was up to his old tricks again ...He was trying to fleece a Calculator from the Nurse's pocket :0) Carl is famous at fleecing Nurses, just ask one of Carl's nurses and you will hear his little line ~ "What do you got in your Pocket?" :0) So that is good, he is feeling up to being his little stinker self!!! The only thing missing is a little three wheel bike, and an open hall way!!!! Oh heck a crowded hallway is even better, it makes for more swerves and turns and break locking!!!! :0)

Have a Great night everyone, and Thank you for looking in on Carl tonight!!! We will keep you posted as the next couple of days will be the toughest!!! We know you will keep those Prayers Stormin Heaven!!!!!

Thank you and We Love you all!!!!!!!!!!!

Kelly & Tom
& Family


Sunday, November 14, 2004 8:05 AM CST

Good Morning to everyone!!!

I talked to Tom and Carl yesterday afternoon, and they sounded Wonderful!!!! Carl was feeling well, and said his legs are not hurting and his tummy is better!!!

They went on a little outting to visit the "Betsy Ross House" It sounds like they had fun together!!! Tom said Freddy & Patti (Our NY cousins) are taking a little road trip to Philly today!!!! I am sooooo Jealous that I will not be there too :0( I know they will have a Wonderful day together!!!! I asked Carl "Do you know that Patti and Freddy are coming to see you tomorrow?" He said "I know and I'm sooo Excited"!!!!!

The boys will check out of their Hotel, and get admitted to the Hospital around noon tomorrow. Tom explained the isolation period to me, and it doesn't sound as bad as I had thought. He will be able to stay in the same room with him, but be on the other side of protective lead sheets that surround Carl's bed. The hardest part will be that Carl can not get out of bed until the radiation level is at a safe level. He can get out of bed to use the toilet, but only for that! He will have a foley cathater placed before the procedure, and I was glad to hear that they will sedate Carl for the placing part. He will not be Happy to wake up with it, and it will probably be uncomfortable, but at least he will be sleeping when they put it in!!! He has had one put in several times, where he was awake, and it was a terrilbe experience for him.

All is good on the home front!!!! We are having sunny cool days, and enjoying our time here together!!! I think the kids are Happy that Mom is here with them, it makes the time go by much quicker, and keeps their lives somewhat normal!!!!!

I wanted to update you all on Alex Scott reaching her goal of ONE MILLION DOLLARS!!!!!!!! The Scott's made an announcement this past week, and it was on many radio stations and News stations around the country!!! We are soo Proud to have been a small part in helping Alex reach her goal!!!! We are very Blessed to have Carl at CHOP right now, being in the care of her Wonderful Doctor Dr. Maris!!! The hard work and dedication of Alex, has made a difference already in Neuroblastoma reasearch and goal of a cure!!! We are forever Grateful to Alex and her family for all that they have done for all of our children battling this terrible disease!!!

I also wanted to share an email that we received from the Scott's about upcoming Events and Awards to continue on with Alex's Legacy!!!!!!

***********************************************************
Hello,

Please forward this e-mail to anyone you think may be interested.....

We are writing today to let you know about a new award that Volvo Cars has created. It is called the Alexandra Scott Butterfly Award and is a hero award started to honor children who go above and beyond for others.

If you know someone you would like to nominate go to ALEXANDRA SCOTT BUTTERFLY AWARD to nominate them. The child who is selected will receive a $25,000 donation to the charity of their choice. As part of the awards Volvo will also make a donation of $25,000 to Alex's Lemonade Stand For Pediatric Cancer each year.

Volvo describes their Volvo for Life Awards as follows:

The courage to act. The conscience to care. The character to do what is right. This is the promise of Volvo – and of the Volvo for life Awards program.
The Volvo for life Awards honors your heroes: ordinary people who go above and beyond the call of duty to help others in Volvo’s core areas of Safety, Quality of life and Environment.

The nomination deadline for the 3rd Annual Volvo for life Awards program is January 10, 2005. Your hero could be featured on this Web site – and receive a donation to a charity of choice, a trip to our Times Square awards gala on March 23, 2005, a starring role in a heroes documentary…or even a Volvo for life!

Thanks

Jay & Liz Scott

www.alexslemonade.com
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Thank you to all that helped our family with our Minnesota Alex's Lemonade Stand this past year!!!! We are Already making plans to hold a Second Annual Alex's Lemonad Stand this coming June. The Scott's are planning on the second weekend in June, so we are Hoping to hold our stand on Sunday June 13th 2005!!!! We will keep everyone posted as the time gets closer. A couple things we are thinking about is to Hold our stand at the "Mall of America" We also have two other Minnesota NB families that may team up with the Robinson's, to help make our Minnesota Effort so Awesome!!!!

Thank you all for stopping by, and as Always for keeping Carl and our family in your Prayers!!!!

Have A Beautiful Day in the Lord+

Love & Peace

Kelly


Friday, November 12, 2004 5:36 AM CST

A quick update :0)

Praise the Lord, the boys bag was found and delivered!!!!!

All went well today with Dr. Maris and Carl's clinic appt. :0) They are waiting to confirm the volume of Carl's stem cells? It seems there is some confusion, and the dose of MIBG will depend on the true amount of stem cells in reserve. This should be settled by Monday. Otherwise, they talked about the MIBG procedure, and isolation time. Tom said Carl enjoyed the childlife area :0) Today the activitiy was reading "Alex's Lemonade Stand" book :0) Carl pointed out his picture in the book for the child life girl :0) Tom said it is a very nice place, and he even had the pleasure of visiting with a family we met in NYC back in April, their little boy Josh is starting a new chemo there. It is always so warming to see familiar faces, and reconnect with friends we have met along the way!!! I will try to update more this weekend, it will be fun to hear what the boys do to entertain themselves over the weekend before they get admitted to the Hosp. on Monday. Carl asked me if it was raining at home, because it was raining there :0( I told him "No it is a Beautiful Sunny day!!!" Hopefully the weather will clear up so they can enjoy getting out to the zoo or something!!!!

Thank you all for checking in!!! And Thank you for keeping those Prayers coming strong!!!!!! They are being heard!!!!!! God Bless you all!!!

Love
Kelly

****************************************************************


Good Morning to everyone!!!!!! Thank you for stopping by today, and everyday that you do!!! We are glad you come along with us on this journey, and we are so Grateful for your Love, Support and Prayers that keep us Strong!!!!

Tom and Carl arrived safe and sound in Philly yesterday afternoon!!! They arrived....but thier bag arrived in Boston :0( So almost everything was perfect. Northwest is tracking the bag, and hopefully today it will be tracked and catch up with the boys!!! As of last night, we figured out that there is no NWA flights from Bosotn to Philly, so we believe they were going to put the bag on another carrier in to Philly, then have it delivered to thier hotel??? Like I said ....Hopefully today

They are staying at the Sheriton University Hotel. The phone no there to reach them at is ~

1-215-387-8000 and they are in room number 1625

I talked to Carl a dozen times last night :0) Each time I was on the phone with Tom, trying to solve the lost bag problem, Carl would pick up the other extension in the room and start talking :0) It was so Precious, and very priceless :0) He sounds so adorable on the phone, and last night he sounded very Happy and well!!! Tom said he has been walking pretty good, and not complaining about his leg, but last night he was having some tummy pains?? It could be anything from constipation to hungries??? We are not too concerned, we are just Glad they are in Philly and will be seeing Dr. Maris today, and will get the MIBG soon!!!!

Yesterday morning we met with Dr. Anderson at Mayo. We were unable to get the blood drawn for the Vaccine study in TX. We needed all of the Tuesdays labs back, and they would not be back until today. So they packed up the collection kit, and all the paperwork and brought it with them to CHOP. The blood draw should be done on Monday now, so that it will get to TX early in the week. Other than that, we picked up a consent form for the MIBG treatment, and some other paperwork and off we went to the airport. We talked to Dr. Anderson about the stem cell infusion (if and when that would happen) Tom will talk to Dr. Maris about this, to see if they have any preferences as to where it is done? We may have the option to get the cells sent back to Mayo from NYC and re-infuse them at home? The other two options would be to do it at Philly, or go to MSKCC where they are, and reinfuse there?

We have lots of questions for Dr. Maris...Poor Tom, I do wish I was there for all of the questions, but I know he will be Wonderful and Carl will be Great with his Daddy helping him through this treatment!!! I am anxious to hear how todays meeting and visit will be with Dr. Maris :0) We have nothing but Wonderful things to say about all of the care and consideration we have received up until now on the phone and emails etc. with Dr. Maris and his sweet Nurse Practitioner Pat B. They have been very kind and compassionate. We are so Happy Carl will be in their hands, we feel very Blessed to have Carl there!!!

I will update later this afternoon!!! Please say a few extra Prayers for their bag to arrive to them today :0) And as Always Please keep all of our friends in your Awesome Prayers!!!! God Bless you all

Love & Peace

Kelly


Tuesday, November 9, 2004 8:22 PM CST

Good Evening this Tuesday!!!

Thank you for checking in on Carl, and for all of your Awesome Prayers that have been stormin Heaven for his healing!!!

Carl has been doing very well, considering he has been off of chemo for almost four weeks. We have started to see some effects of the progression. Since this weekend, Carl has been complaining of leg pains (mostly his left leg) and he has started to limp some when he walks. It is so hard to see this happening, it is the reality of this disease, and a reminder of how fast Carl condition would deteriorate if we stopped all treatments.

Dr. Maris will be seeing Carl in the clinic at CHOP on Friday morning. Then on Monday he will be admitted to the hospital. I believe the treatment will happen on Tuesday. What MIBG treatment is, for those of you that are wondering…. The same radioactive isotope that is injected into Carl to do a MIBG scan (areas of NB light up on scan) at a much higher dosage will be injected into Carl. The radioactive material will go to the cancer spots and kill the tumor cells. During the time that Carl is the most radioactive, he will need to stay behind protective screen walls, and be in somewhat of isolation until the radiation level is safe. The hardest part of this whole process will be the isolation. Everything that goes in with Carl will need to be thrown away, and will not come out with him.

I spoke with an associate of Dr. Mairs this evening to go over some of the plans and to make arrangements for Carl to come to clinic on Friday. We are very Happy Carl will be able to get in so soon, and get this treatment in hopes of halting much of the NB progression. We do not know how much this will help, but we are Praying very hard that it does a good job of killing as much tumor cells as possible!!! Carl will be able to have additional treatments in the near future, as long as his stem cells are not needed to rescue him following very low counts when they will drop several weeks following this treatment. Carl should feel pretty good coming out of MIBG treatment, and will most likely be back to running and jumping again very soon!!!!

To add a little more stress to our already crazy lives, I learned this week that my job at the post office will be turning Full Time. Because of the need to be available and active in my job right now during this critical time of waiting for the position appointment, I am not going to be able to go with Tom and Carl to CHOP. We decided that my full time position was very crucial to us in our lives, and we must make these sacrifices to try to make it work for me to be able to keep my job. Tom has time available to him for taking leave from his job, so he will be the main caregiver, and one to take Carl for appointments and treatments for awhile, until I have some time built up to take off too. It is very difficult and painful to make these choices in our lives, but we also know that we must consider our future, and what our situation will be like regardless of how things turn out for Carl down the road. We Pray that our lives will somehow find a normalcy, and we can enjoy these Blessings and manage with Carl having some stability of his disease. He is also ready to start Head Start school when he gets back from treatment, and he is soo Excited to be finally going to school!!!! …. Another little sneak peek at what it would be like to live a normal life!!! Working actually feels very good to me, it is a sort of “escape from reality” and without trying too hard, one can almost slip into that all too comfortable “denial mode” that NB parents know and can all relate to so well.

I think Carl is excited to be taking a trip with Dad again!!! He has done a few NY trips with Dad in the past, and these two boys managed so well together!!!! I also think there is a chance that Carl will actually behave better, if I am not there with him :0) I also do believe that this will be much harder on Mom than it will on Carl …

So Thursday we will head to Mayo for an Appt. with Dr. Anderson, then to finish up with drawing blood for the Vaccine trial we have also enrolled Carl in. Then the boys will fly out to Philly, and meet Dr. Maris on Friday morning. We are not sure where they will be staying yet, someone from the Hospital will be phoning tomorrow to help us make arrangements. I was told that since we were doing MIBG treatments, we would not be able to stay at the PA Ronald McDonald House?? Not quite sure, but I was told they would help us get something arranged. I believe Tom should be able to stay at the Hospital during Carl’s admission, so this will not be too bad. I will be sure to post his hotel/phone no so that anyone wanting to get a hold of them or just call to offer moral support during Carl’s isolation period, you may do so!!!

Please keep those Prayers steady during the next couple of weeks, it will be a challenge for all of us!!! We are hoping the boys will be back home for the Firemans Steak Fry next Friday night!!! Then on Saturday night, Carl volunteered himself (during our 4H meeting last night) to help out selling Pop- corn during Turkey Bingo, for the Beneath the village Wreath Celebration in Morton ~ Next weekend!!!!

Please remember all of the other children fighting cancer, and other illness in your Powerful Prayers, as our hope continues for a cure very soon….

Thank You we Love you all!!!!!

Kelly & Tom
& Family


Saturday, November 6, 2004 9:28 AM CST

Good Morning this BEAUTIFUL fall (Minnesota) morning!!!!!

The forcast is for 60 and above warm sunny weather!!! What a Joy and a gift to us this late in the fall season!!! We know in Minn how easily it could be snowing and blowing and bitterly miserable. It is also opening deer hunting here, so the hunters should enjoy warm sitting :0) But I think I have heard they actually like a bit of snow for tracking (The non sitting ones)

Auntie Joy is at home this weekend for Grandma Phyllis' Senior Center Fall Fund raiser. I am going to bring Sydney down shortly to help serve and clear tables. Grandma will be spending the afternoon at the ceter too, she will enjoy getting out and about on such a nice day, and seeing all of her friends from Morton!! An update on Uncle Mark . . He is back home and is doing well!!!

Carl's docotors appts, went well this week!!! He is in very good shape going into MIBG treatment, which is such a HUGE Blessing!!!! Carl's blood counts look very good!!~

HMG ~ 10.4
ANC ~ 15.41
platelets ~ 294,000

MIBG Scan ~ multiple areas of diffuse increased uptake within skeletal structures, including skull, proximal hemeri, pelvis, femurs, and proximal tibias. These would be consistent with marrow involvement with know Neuroblastoma. 8/13/04, previously noted diffuse abnormal uptake in thoracic and lumbar vertegrae is much less evident on todays exam, as is previously noted increased uptake in the proximal and distal left femur. However, diffuse uptake in the mid to distal left femur is more prominent on today's exam. With spect imaging, multiple foci of increased uptake are seen in both lobes of the liver, also consistent with metastases. On whole body images, this appears unchanged. IMP: multiple areas of abnormal uptake consistent with skeletal and hepatic neuroblastoma metastases, with mixed response to therapy compared to exam of 8/13/04.

Overall the report shows some improvement with marrow uptake (Skeletal) since August scan. Carl has new/more uptake in his left femur. So he has had some response to therapy, but very mixed???

We are very confident that he is going in to MIBG therapy in excellent shape for his condition!! He is feeling well, and continues to maintain his high energy level!!! He is outside with Sam right now hammering boards, as they are in the process of making something??? :0) He enjoys his wide open spaces and freedom to play outdoors just being a Happy little boy!!! We are also Happy that after the MIBG treatment, Carl will not have any side effects of sickness or pain, hopefully allowing him to keep up his current quality of little boy living!!!! We will have to keep an eye on his counts, and keep him protected when they do get dangerously low, but other than that, it should pretty easy!!!

Carl was also excepted for Head Start this week!!!! He can start this coming week, I just need to complete some paperwork and he should be good to go!!!! He is very Happy about starting school, and we could not be Happier as parents that he will be allowed to experience being a big boy going to school, like other children do!!!! The first couple of weeks will be hit or miss, when he can go, but we are Hoping that soon after we are done in Philly, that Carl can get on somewhat of a routine, and enjoy many full weeks of school to come!!!!

Next week I will bring Carl back to Mayo on Tuesday for a blood draw to check for the EBV (Ebstien Barr virus) to qualify him to enter the new Baylor TX vaccine study. Then on Thursday we will go back again, to draw his tubes of blood to send off to Dr. Heidi Russell in TX. The process of getting his blood/cells ready for reinfussion will take about four months, so this will be in the works while we are hopefully getting Carl stable by MIBG treatments in the mean time. We will also see Dr. Anderson on Thursday to go over anything before we head to CHOP (Childrens Hospital of Philadelphia) the beginning of the next week (We are thinking by Nov 15th) Dr. Maris is still in the process of getting all of Carl's preliminary tests/studies together. But by yesterdays consult with Dr. Anderson, it looks like Carl should meet all of the requirements, and is a very good candidate for consideration at CHOP!!!

We feel Carl is physically ready and able to go into the MIBG treatment, and we are very Hopeful he will have a Great response!!!!! Although his bone marrow is still at 30 percent involved, he has good cellularity of >95%. Which means his marrow is functioning well and is not so beat up by all of the chemo he has endured over the past two+ years. Carl's weight is holding at 38 pounds, and we think he is getting taller every day!!! I have been trying to boost up his nutrition with a couple of cans of pedia-sure daily, and I think this has really helped!!!!

We are Happy to be back home, and also overwhelmed with thoughts of what our next couple of weeks will be. We know we will manage, and will be in GODS hands, as we feel ever more confident that HE has led us in this direction, and we feel this is right plan for Carl now!!! Thank you all for keeping those Prayers lifting us up daily, we don't know what we would do without all of your constant Love and Support!!!!! We can count on your presence in our Lives, to remind us of HIS presence ALWAYS!!!!

Please continue to keep all of our friends in your Powerful Prayers as their journeys lead them on new paths. Please remember all of the Precious Angel's that we have lost to this terrible disease, and remember all of their Parents struggling daily for Peace and meaning. Pray that warm memories flow to their hearts, as a constant reminder that their child will Live on Forever!!!

Think of all the beauty still left around you and be Happy.
Anne Frank-

Today is for itself enough....
Shelley

One ought, every day at least, to hear a little song,
read a good Poem, see a fine picture, and if it were possible, to speak a few reasonable words.
Goethe-

Peace by HIS Generous Love

Kelly & Tom
& Family


Tuesday, November 2, 2004 4:53 PM CST

Good Evening to everyone!!!

We hope you all had a Fun Halloween, and made it through this big election day!!! I will be very Happy to NOT be getting any more political phone calls every day :0)

Carl is busy playing with a new little group of friends he met here at the Donald House. Very cute little ones, a little bald girl, she looks about 2 or 3 years old, kind of reminds me of Carl not so long ago. And another little girl wearing a mask, also reminds me of Carl's transplant days :0) And another little boy about Carl's size!!! He gets so busy and involved in his playing, doesn't even want to stop for supper. I fixed some soup, and he did eat part of a bowl before heading back to the play room. I'm sure he will want to raid the pantry about bed time :0)

This week we will be busy getting all of the necessary preliminary tests done that will be needed for the MIBG treatment at CHOP. Tomorrow we will go to the clinic early for blood work, then we will do a four hour urine collection to once again check vma/hva levels. Then Carl will have a heart echo. On Thursday he will get the MIBG nuclear Med injection, and then on Friday the MIBG scan followed by our Doctors appt. with Dr. Anderson in the afternoon. Carl's bone marrow results came back about the same as last time. I am no pro at reading these reports, but it appears that the cells are matured, and overall about 30 percent marrow involvement? One aspirate showed 10 percent and the other showed 60 percent?? Dr. Anderson said mixed report, some same, and some better??

It sounds like Carl will be able to get in to CHOP as early as the week after next!! I am very Happy about this, as I was beginning to be worried about him being off of chemo for too long. This Thursday it will be three weeks since he has had chemo. Carl continues to maintain his high energy level, and still tires me out, and puts me to shame!!! I only wish he could share a small portion of his energy :0) This is very good of course, it is a good sign that his NB is staying stable. I am constantly on the look out for any clue that he is in pain or stressed. Aside from his port-a-cath still being a little tender, he has been doing very well since last week!!!

Thank you everyone for stopping by to check on Carl, and as Always for lifting him up in Prayer!!! It is with all of our Prayer Power happening, and by the Grace of God that this little boy is still with us and is doing so remarkable!!!! We are so very Blessed and Grateful to have all of you in our lives, to share Carl and the Love we know that is given us from above. God Bless you all+

Please remember all of the other children battling cancer and other illness in your Prayers as well. And remember all of the little Angels that are no longer with us here, and all of their Loving parents that miss them so terribly.

Please keep Uncle Mark in your Prayers as he is having some tests and procedures down at Methodist Hosp in the cities. He gave us all a scare, but we are sure he is in Gods hands and will back home soon!!!

Have a Great Evening everyone!!! We will keep you posted on Carl's week, and anything new!!!


By GODS Loving Grace

Kelly & Carl
at the Donald House


Saturday, October 30, 2004 7:59 AM CDT

Halloween Pictures ~ CLICK HERE

The kids enjoyed carving pumpkins with Uncle Chuck yesterday, and had a Fun night trick-or-treating!!! In the pictures, we visited Jenny Bloedow's house :0) Where Carl left with a rope :0) Then we hit Sam's teacher's house, Miss Jones :0) They all got lots of candy and had a Wonderful day!!! Sam was Prince Andrew (The prince that rescued sleeping beauty) And Carl was a Dragon :0) Sydney Helped Grandpa George hand out candy in Morton!!!

I will update more later, still waiting to hear back on Friday's bone marrow test, and what will be taking place this week.

Thanks for keeping the Prayers coming strong!!!!

Love to you all

Kelly



Good Morning this Saturday!!

Thank you all for all of your steady support, for all of your Awesome Prayers and for everything you continue to do for Carl and our family to help our lives when our times become so confusing and troubled.

Carl's surgery went very well, he didn't have any problems like the last time waking up with a headache. The surgeon said there were no complications getting his new Port-a-cath placed!! He also had bone marrow biopsies and aspirations, that are done here by a bone marrow team. Carl has had quite a bit of discomfort at his new port site. He complains and winces when we pick him up. We have been giving him ibuprofin quite regular since yesterday. We expect this soreness will subside and should even get much better today!!!

We probably will not hear the BMA results until at least Monday. They usually are done within a day, so we should get those back then. Both Dr. Anderson and myself have been in touch with Dr. Maris from CHOP (Childrens Hospital of Philladelphia) Dr. Maris thinks he can help Carl, and he said they do have some openings soon!!! After Dr. Anderson gets back to him early next week with BMA's and other information requested, we should find out more about available dates for Carl. The protocol states that the child needs to be at least three weeks from Chemo to start MIBG. I am not sure if this is true for all of his protocols, but it is for the one he sent to us. If we can't get Carl in very soon, then we will have to get him on some type of chemo. We are hoping and Praying that we can move directly to CHOP for MIBG in the next couple of weeks. Carl does have a bag of stem cells available in storage at MSKCC in NYC, which are a requirement to be considered for the MIBG treatment.

We also heard back on our email request to Dr. Heidi Russell from Baylor at TX. She is working on a vaccine study that would require us to send blood to TX to be worked on for about four months. Here is what Dr. Russell said ~

Thank you for your interest in our lymphocyte study. We are generating two types of lymphocytes that are modified with a chimeric receptor that has a GD2 antibody fused to the lymphocyte receptor. Therefor the lymphocytes should recognize and kill the tumor cells. Half of the lymphocytes will be generally stimulated, and the other half of the lymphocytes will be specific for EBV.
>
> We can send you all the tubes for the blood we need to get started, the consent form and a fed-ex slip to send it back to us. Then it would take about 4 months to make the cells. During this time, we'll keep in touch about how the cells and how the patient are getting along. He will need to receive the cells in Houston and stay for about a week, other follow-up can take place at home.
>

So we have this option as well. We know of several other parents that have already got started with the vaccine process, and may have their cells ready fairly soon. Carl does meet the requirement of never reaching a HAMA when doing antibodies, but the other eligibility is being positive to the EBV (Ebstien Bar Virus) which most of us are, so hopefully Carl too will test positive for this!!!

So for right now, we are kind of in a holding pattern. . . It is always so difficult to just be waiting. . . But we feel comfort in that we are in HIS hands, and we do feel peace and HIS Love surrounding our lives as we move ahead with Carl on this next step!! Aside from Carl's temporary discomfort of his new Port, he is Happy, and still full of Energy!!! He is Excited for Halloween, and he keeps asking me when is Halloween!!! He just asked me about 5 minutes ago ~ "Is it today"? :0) We are trying to take each day as it comes, and enjoy every day we are given, because each new day is a gift from HIM!!!

We are back home for a couple of days, then we will be back to Mayo early next week for Blood work, Labs, and an MIBG scan, as well as meeting with Dr. Anderson to go over results and discuss our next leg of the journey. We know you will be lifting us up in Prayer, as we can feel the Power of all of your Prayers Stormin Heaven for Carl!!!

Thank you and God Bless

Teach us to number our days that we may get a heart of wisdom.
Psalm 90:12

Dost thou love life? Then do not squander time,
for that's the stuff life is made of.
Benjamin Franklin

The best thing about the future is that it
only comes one day at a time.
Abraham Lincoln

Peace. . By HIS Love

Kelly & Tom
& Family

P.S. Check back for Halloween Pics, and check Bryan's site for an oldie but goodie..... (sorry Bry) :0)


Thursday, October 28, 2004 5:08 PM CDT

Good Evening this Thursday!!!

We just got back from the clinic and our appt. with Dr. Anderson. Carl's vma/hva were slightly elevated. The ct scan shows the liver spots as some lesions unchanged, and some are enlarged. Carl's blood counts are very good, and holding well, so we are very encouraged by that report!! We are saddened that this chemo did not do more for Carl in terms of the liver, but we did accomplish his blood count recovery, and that will allow us to go on to another treatment from here.

We discussed several options for Carl, from the IL-2/IL12 Study, to a new chemo trial here at Mayo. Then we brought up the option of bringing Carl to CHOP for the MIBG treatment. That is what we are setting our sights on right now. With this report of slight progression, we fear getting hung up getting on the IL study and Carl progressing worse. We have been reading about several other relapsed children lately (even with heavy bone marrow disease) that have done the MIBG treatment. So for whatever reason, I would Like to believe GOD is directing us in the right decision/path (And we do feel peace) we will be starting the process to get Carl to CHOP (Philly)

Dr. Anderson has emaile to Dr. Maris, and we will find out more hopefully tomorrow. We also will probably need to get Carl on some other chemo in the mean time to hold him over. Now we are getting more limited on the drugs that he will not be resistant to, so hopefully Dr. Maris will have some ideas on what to do there. We are also going to find out about collecting some blood to send to TX for the vaccine study that Dr. Heidi Russell is working on. This may be an option down the road after the MIBG treatment???

Tomorrow Carl will have his port placed, I believe he will be scheduled early in the morning, I will need to call the surgery scheduling line later tonight for the exact time. Then while he is having his surgery, a Bone Marrow ASP/Biopsy will be done as well. We will hopefully be able to head back home for a couple of days, then we will be back for an MIBG scan and chemo. I am hoping this will get scheduled for Monday or Tuesday.

I will keep updating as I find out more information. Please keep Carl and our whole family in your Powerful Prayers as we will be taking another path, and another big step to try to buy us more time with Carl. We are feeling at peace, and for the most part we are feeling that this is the right decision right now. We do not want to waste any more precious time, and we know that Dr. Maris will be Wonderful, and he will help us with Carl. Dr. Maris is the doctor that helped our Precious Angel Alex Scott for many years, and never gave up trying to help her and her family!!

Thank you and God Bless+

With Love in HIM

Kelly & Tom
& Family


Monday, October 25, 2004 1:48 PM CDT

Good Afternoon this Monday!!!

Carl's labs this morning ~

Platelets ~ 37,000 WhoooHoooo!!!!!!!There coming back!!!
HMG ~ 12.5!!!!
Wht ct. ~ 18.3!!!

Thank you Lord!!!!!!!!! I was Praying for NO transfusions today!!!! What a Blessing to be home this evening!!!

We are well, and very Exstatic about Carl's counts today!!! We really were expecting a transfusion of platelets at least, but this news is so Great!!!!!

Carl is out playing with Pika, it is sunny and cool, but a very nice Beautiful day here in Franklin :0)

We enjoyed our trip to Byron's Twietes Pumpkin Patch on Saturday!!! It was a little rainy and chilly, but we managed to keep warm and still had a Great time with all the camp kids that joined the party!!!!! Thanks Stacey and Megan for all that you do to arrange these Wonderful get-togethers for all of these kids!!!

The next couple of days we will be getting ready to head back to Rochester for Carl's Doctors appts on Thursday & Friday. He will get his new Port placed on Friday, and hopefully we will be back home again for the weekend!!! We should also find out what the next step will be for Carl's treatment plan. Either another cycle of chemo the same as he has had now twice (Gemcitibine) or we will make plans to head to Madison Wi to see the NANT Onocologist Dr. Sondel there about the phase I study we are looking at? Today we just feel very Blessed to have Carl here with us, still feeling Great and full of Life!!!!!

I would like to share with you a Beautiful Essay a Sweet friend of Carl's wrote. Anna-Bannana who Carl met in NYC last year during Antibody treatments. For this Essay, Anna won first place ~ Andre-Sobel Award!!! The assignment was to write a letter titled "The letter I wished I would have received from a friend or family memeber while in treatment" It is truly Amazing and Most Definitely Note Worthy, and I would like to share this with all of Carl's faithful readers/Prayer Warriors!!!!

ANNA'S ESSAY

Wishes to you all for a Beautiful Day in the Lord+

My Neighbor,s Bible . . .

I am my neighbors Bible,
He reads me when we meet;
Today he reads me in my home,
Tomorrow in the street.
He may be a relative or friend,
Or slight acquaintance be;
He may not even know my name,
Yet he is reading me.
-Author Unknown.

Peace in HIM

Kelly & Tom
& Family






Thursday, October 21, 2004 12:08 AM CDT

Hello this Thursday!!!!! MEA Weekend YIPPEEEE!!!!!!

First off.....Yes Jenny I am with you on the Sox thing :0) It was a Great Game last night, and Hats off to the Sox for coming back after three losses!!! Sorry Ann & Eric Fischer, and all of our Dear Loving NY Family & Friends that We Adore and Love so much (die hard Yankees fans)!!!!! Something about rootin for the Underdog, is Minnesota style!!! And I agree about Dougie M. :0) It will be a fun World Series to watch!!!!!

Carl, Sydney and I watched the game last night from the Redwood Hosp. :0( Carl did need platelets and red cells, as his counts were low from last weeks chemo. It went very smooth however, and our Sweet nurse Jeannie Green did such a Perfect job of getting Carl's IV line in his hand, and wrapping it up (like a cast) :0) and the whole process was pretty manageable. Carl even had to have two sticks in his arm earlier in the day for his blood draws. He did well, a little fussing but overall he was very brave and a such a big boy through it all!!! Carl was a bit antsy in the Hosp. we were there from 4:00 til after 10:00 to get the whole job done. It helped to have Sydney with us to entertain Carl and take him for walks and a ride in the wagon around the halls :0) Then we just watched the game and Carl sang "Take me out to the ballgame" at the top of his lungs!!! It was getting late and I was trying to stifle his performance, but Sydney reminded me "Mom just let him sing, he is soo Happy" :0) Which is very true!!!

School was so fun for Carl!!!! He didn't hesitate to go with the teachers to complete his testing!!! He did very well, and was scored about average for most areas, he scored low for motor, which I am not surprised with his disease affecting his bone marrow, which involves his legs. Carl scored on the Higher level with Social skills, which too was no surprise :0) We even learned that there may be an opening in a few weeks for Head Start, and Carl could go to school Monday through Thursday every week!!! I am soo Happy for this chance for Carl!!! I asked if it would be a problem with our schedule? Sometimes Carl may need to miss shool for a week or more with his treatments, and it sounds like this would not be an issue, we would just need to keep the staff informed of our situation/schedule for Carl!!! So Carl may get to go to School, like a big boy!!! I will need to bring Carl to school every day, because bussing runs only within the Redwood Falls City limits. But Carl would be able to take the bus from Jeannie's daycare if he should be there while I am working!!!

The kids are enjoying being home today :0) I couldn't believe Sam.... A kid who I have to drag out of bed every morning and dress while he is still sleeping.... was the first one up, and waking the rest of us up!!!! I guess it's like those snow days, when you could go back to bed, but you are just so darn excited you couldn't sleep so you stay up anyway!!! :0) We are going to try to do a face lift on the house today and tomorrow, then Saturday we will be packing up and heading to Byron to visit the Tweites Pumpkin Patch with our friends from Camp Jornada!!! Bryan will not be coming with, he will be joining Emily and her family for a little trip to Chicago this weekend!!! He is very Excited to be going, and I told him I don't blame him, I am sure he will have a Blast!!! We will be doing some fun things at Tweites including a Hay ride!!! We are keeping our fingers crossed that the weather is nice, at least not raining.

Thank you all for taking the time to check in on Carl as often as you all do, it really means the world to us to know that we have all of your support, and encouragement and Prayers lifting Carl up daily!!! I do believe all of the Prayer Power is what is keeping Carl so well and full of life!!! He is a little Miracle, and we are Amazed every day by his Spirit and Energy!!!! We continue to have HOPE alive in our hearts, and it is so easy by just watching Carl and the Love he generates wherever he goes!!!

Nine requisites for contented living:

Health enough to make work a pleasure. Wealth enough to support your needs. Strength to battle with difficulties and overcome them. Grace enough to confess your sins and forsake them. Patience enough to toil until some good is accomplished. Cherity enough to see some good in your neighbor. Love enough to move you to be useful and helpful to others. Faith enough to make real the things of God. Hope enough to remove all anxious fears concerning the future.
-Goethe

May you find Blessings in every day!!!

Love to all

Kelly & Tom
& Family


Wednesday, October 20, 2004 7:41 AM CDT

Good Morning this Wednesday!!!

Carl spent the night at Auntie Sheila's house last night :0) He pleaded with me all day yesterday, "I don't have anyone to play with" He was missing his cousin's Sarah and Kate, and thought they should not be in school yesterday so they could play with him!!! We waited until the afternoon, then Carl called to Auntie Sheila's house and left a message :0) We called back a little later to talk to the girls after school, then Carl phoned Auntie at the bank to see if he could come over to play!! So Carl got to stay at Auntie Sheila's house last night, as she had a day off today :0) I made Carl very Happy, but when Sam got home from school, all heck broke loose when he found out Carl was at Uncle Johnny's and he could not stay over night!!! I reminded Sam that he gets to stay many times when Mom and Dad are away to Rochester with Carl. I thought it was so cute how Carl thinks it is Auntie Sheila's house, and Sam thinks it is Uncle Johnny's house :0)

I think Carl got spoiled rotten in Rochester last week!!! He misses his friend Maya, and he was getting very accoustomed to having numerous art projects and activities set up for him in the play room each day!!! He got pretty used to that life style, and was enjoying himself :0) I also think Carl is sooo much ready for some type of pre-school/learning readiness. And as a matter of fact, I will be bringing him this morning to "Sam's School" for pre-school screening!!!! When I told him the other day that we would be going to school to do some fun testing/play activities, he about jumped out of his skin with delight!!! This little boy wants to go to school so bad!!! He asked me about it yesterday too, he wanted to know if I would be leaving him there? I told him No I would be there too, and then later he would be able to start some learning classes and go to school!!! He said "But arent you going to leave me there, I want you to leave me there by myself!!!" :0) He really is so Excited to go today to this screening, and Hopefully we will be able to get him into the learning readiness program!!! And of course I Pray that we will be able to be home often enough for Carl to be able to "Go to school" This little boy even wanted to know if I would wake him up early like the other kids so he could go to school too!!! Bless his sweet little heart!!!!

Yesterday Sam's class made Stone Soup :0) It sounds like it was a hit!!! I sent him off to school, forgetting to send him with a veggie for his contribution to the soup ooops :0( So Carl and I made a quick trip up to school to make sure Sam had something to add to his class Stone Soup!!! Carl enjoyed peering into Sam's classroom and picking out Sam in the crowd :0) And I am sure he would have stayed all day, if he could have!!!!

This morning I will bring Carl to the Hosp, to check his blood counts, and have a culture drawn. We are hoping and Praying his counts are holding!! I have noticed a couple of bruises on his head? So wondering if the platelets are dropping, or if it is just a bad week for clumsey bumps? Then we will head over to Carl's preschool screening!!!

Wishes to you all for a Great Day!!! Enjoy, I heard that it will be in the 60's here today?? We have to enjoy this warmth while we get it, it sure won't be long and we won't get these little breaks for a loooong time!!!!

The Art of Abundance ~

Abundance is . . . a jack-o-lantern grinning at you from a doorstep.

Abundance is . . . a comfortable chair

Abundance is . . . a class in a subject you're interested in.

Abundance is . . . the potential of every child born on this earth.

I will bless the LORD at all times:
his praise shall continually be in my mouth.
Psalm 34:1

Love to all

Kelly & Tom
& Family


Monday, October 18, 2004 11:32 AM CDT

Hello to everyone this Monday!!!

We hope you all had a Nice weekend!! It sure has turned chilly here in Mn. Burrrrrrr. The boys bundled up and played outside anyway!!! They enjoyed farming with Dad for a few hours yesterday, and Sydney and I spent some time working on her Health poster for school. We are glad to be home again for a couple of weeks before needing to go back to Mayo. On Wednesday I will bring Carl in to the Redwood Hosp. to have his blood counts checked and a culture done to make sure the infection is gone.

I checked emails last night and was so saddened to read about another relapse. Little Sydney Dungan from Texas has recently relapsed. Her Dad Mark is the Wonderful man that started Lunch For Life last year and has continued his efforts tirelessly this year to continue for his purpose!!! All of us NB families share this same purpose, and for that we all feel connected and feel each others pain and loss. It hit me in the gut to read about Sydney, and how it brought back those those same feelings nearly a year ago. A year ago we thought Carl was just fine, he was still doing antibodies in NYC and our lives seemed to be feeling "Normal" again for the first time. Shortly after Carl returned from his Nov antibodies and scans, we heard that devestating news that Carl had relapsed. How we learned in a hurry that we could never take one day for granted (not that we did since Carl's diagnosis), each and every day now was ever more cherished.

Lunch for Life is still an ongoing benefit for Neuroblastoma and all of our children. The link above will take you to the Website Mark has created for all of our children. If you have not already pledged a lunch for all of the NB children, you may do so still!!! I myself have slacked and not sent in our donation, but will be doing this today!!! It is only with research dollars that a cure can be found, and our children deserve the best chance at survival, the same benefit as any other childhood cancer enjoys, they cannot fight for themselves, so we have to help them!!!!!

An update on Alex's Lemondade Stand ~ The total is very near Alex's goal of one million dollars!!!! Last weekend most VOLVO dealers around the country donated money for each test drive of a new Volvo!!! I have not checked lately but I do believe they are very close!!!!! Next summer "ALEX'S LEMONADE STAND" Will be truly Amazing with all of the dedicated folks getting involved to help us raise these so important research dollars!!!! Already the money raised has helped in some of the new trials that have become available for our children. Carl may even directly benefit from all of our Hard work!!!!! The NANT group of Researchers/Doctors is working steadily on new and coming trials for NB and one of them is the IL-12/IL2 that we hope to enroll Carl in, at Madison Wi soon!!! I was contacted by a man John Grossman from SYKE magazine last week, he is doing a story about Alex's Lemonade Stand and wanted to talk to several other families that participated this last June 12 with a Lemonade stand. This magazine is one that is in the seat backs of Delta planes. It will be interesting to see the final story!!! Carl's Commando's is hoping to gear up for next years Lemonade Stand and possibly joing forces with the Hammer, and the Hollway families, also Mn NB families!!!!

Thank you all for keeping Carl in your Prayers, Please continue to Pray for all of the NB Warriors, and Angels that we have lost to this terrible disease. Remember the parents that are struggling to find peace and comfort with either their battling child or the loss of their Angels.

Have a Beautiful day in the Lord

Kelly & Tom
& Family


Friday, October 15, 2004 1:38 PM CDT

HAPPY FRIDAY!!!!!

Yes we are busting out of Club Med today!!!!!

Carl's last antibiotic infusion is at 2:00pm so we should be on the road by 3:30 YIPPEEEEEE!!!!!

Auntie Jean we are glad you will be staying until tomorrow so we will get the chance to see you!!! What a bummer, you come all the way up from St. Louis, then we leave town the whole time you are there :0( Thanks for all your help with the kids, and for helping Sam with his little bunny journal!!! We can't wait to see your Pumpkins Sam!!!

Carl's return appts. are set up for Oct. 28th & 29th, he will have an abdominal CT, an Ultra sound to check for the best place to put his new port, then see Dr. Anderson and a Surgery Consult. Then on the 29th, surgery to place the new port. Carl and I ran in to Dr. Anderson down stairs a little earlier. After a long week here at Club Med, it was nice to see his smiling face :0) He said he was very Pleased with Carl's counts!! I asked him if he knew if Carl would be doing another cycle of chemo before we head to WI. and he was not sure, he said it depends on the Doctors there? He said probably about a 50/50 chance? Either way we will be Glad to see him when we return in a couple of weeks!!!

I better sign off and go round up Carl to get hooked up for his final antibiotic infusion!!! Oh and grab our clothes out of the dryer!!!

Have a Great Evening everyone, and Thank you for all of your constant PRAYERS And Support!!!

We Love you all!!!!

Kelly & Carl

P.S. Please keep sweet little Maya in your Prayers, as she is still trying to get her tummy working right.

MAYA'S PAGE"


Thursday, October 14, 2004 5:37 PM CDT

"If you want to hear GOD laugh, tell him your plans"
Mother Teresa ~ borrowed from Maya's page :0) Thanks Holly!!

Speaking of Maya, Please continue to keep this sweet little dolly in your Prayers!!! MAYA'S PAGE

Carl's port is out ~ he temporarily has his cast :0)

We go home tomorrow. . . YES HOME ~ we learned today from the infectious disease doc that since the source of infection is removed, we do not need to do a week of antibiotics after, only 24 hours, then we are done!!!!!

That will be Wonderful!!!!! THANK YOU LORD!!!!!

The morning started out VERY stressful!!!!! From the nurse questioning if Carl should get his chemo since his ANC (infection fighting white cells) were so low??? Leading to STRESS for Mom!!!! To a personal visit from the doctor to inform me that if I choose to do chemo, I could be putting Carl at risk for serious/life threatening consequenses!!! Then on to the afternoon, Carl has been in pain with a terrible headache since coming out of anesthesia, and has required several doses of Fentenal for relief. He also was having fits of screaming from pain (worse than antibody pain when we did 3F8's in NY) Then the resident came in to tell me the news that there must have been an error with Carl's blood counts because the ANC was actually 1500 today and yesterdays recorded figure was 400, which could not have been correct??? So the whole Serious/Life Threatening scene was all for nothing, which I still have not recovered completely!!! I cannot go in to details, but those that Understand. . .Understand!!!!

We are Happy however that we can get back home and not need to be running to and from the Hospital for antibiotic infusions!!! Carl will start his GCSF shots tomorrow, and we will check his blood counts several times in the next two weeks, in case of needing a transfusion. I feel frazeled today, to say the least!!! I do believe a cocktail or two would be in order for tomorrow night when we get home!!! Well a kiddie cocktail for Carl :0) It just breaks my heart that Carl was so good this morning, getting up and asking me when we would be going down to get his cast. He was in such a good mood, and so very cooperative!!! He rode down to surgery so nice on a little crib/cart, smiling and talking to everyone he passed. He even was so good when they made him breathe the mask to go to sleep. Then after waking up, and even after getting up to our room he was having such terrible headache pains :0( What these poor little people have to go through, I often question how this can be right?? It certainly does not seem fair to me and I guess never understand, just try to trust and believe in HIS plan for each of us, because it is definitely not the plan we would choose ourselves. . . .

Thank you everyone for stopping by, and for keeping Carl and all of his little friends in your Prayers. God Listens, and he shows this by all the many Blessings we can still find, even when our road is rough and we don't understand, we just have to get out of the drivers seat, and go for a ride and trust HIM at the wheel!!!

Carl did get his second dose of Gemzar this morning, I think God had something to do with this count thing, I think this was a little demonstration to reassure my faith in HIM was right, to believe and stand up for!!!

Love & Prayers

Kelly & Carl


Wednesday, October 13, 2004 12:38 AM CDT

Good afternoon this Wednesday!!!

This morning we learned that Carl's Oct 10th culture came back positive:0( This bacteria seems to be slow growing, and slow to clear. The decision was made to pull Carl's port tomorrow after his chemo in the morning. He will have a IV in his hand (He calls this getting a cast) Our Dear cousin Patti Hauck from NY remembers this, because last time we went through this ordeal, Carl called Patti up and told her he had a cast :0) Then the whole plan has changed to have Carl admitted to the Redwood Hosp. to finish out his antibiotics. I believe Carl will still be able to leave the Hosp. on passes inbetween his infusions, like we have done in the past also. I am sure we will have lots of volunteers (Aunties and Uncles) willing to bring Carl in for one of his shifts once in awhile :0) I am not sure how long this will be, probably for at least 10 days. Hopefully with the port removed, the infection will clear sooner. We will have a new port placed when Carl is due for his next chemo, which has not been scheduled yet, but we do have a return appt. with Dr. Anderson on Oct 28th. I am sure it will be arranged then, as well as our next step of treatment. By then we were hoping to be moving foward on the Phase I trial in Madison Wi. (NANT IL-12/IL-2)

We were hoping, and looking forward to seeing Auntie Jean when we got home Tursday. Jean is in Morton all week to spend some time with Grandma Phyllis!! I am not sure, but I think Jean is leaving on Friday? We will get discharged on Friday if nothing else comes up in the mean time. It was fun to read your notes Auntie Jean :0) And Grandma's too!! We are so Happy you are getting to spend this time with her, and I am sure she is enjoying your company as well!!! We are also so Pleased to read how well Grandma is doing, and how well she is walking again!!!! Keep up the Great work Grandma!!!!!! We all want you back home soon, it is not the same missing those Sunday night suppers in Morton, and getting together when we all did!!! Also the boys miss going to Grandma's house and getting spoiled rotten :0) Only at Grandma's can you get Ice Cream and Pop corn in the morning!!! And a full cookie box waiting for grubby little fingers to help themselves any time :0) We all miss you at home Grandma and we look forward to when you get back there again!!! we Appreciate all that you are, and all that you do for us still!!! We are not done needing you. . . and we ALL Love you so much!!!!!

I also should mention that we were moved to a different room. We are now in 3-108 and our phone no is 507-287-4620
They needed our room for a patient that required the overhead monitoring camera. So we are two doors down, and exactly right across the hall from Maya!!!

Thank you for all checking in on Carl, and for keeping those Prayers Stormin Heaven!!! We appreciate all of your Love and Support!!! We continue to find many Blessings in each and every day, and one of our Biggest Blessings is all of you!!!! God Bless you all

Love & Prayers

Kelly & Carl

P.S. Thanks for joining us for Supper last night Sara, it was fun!!! Thanks Roy for picking up our Tab!!! We miss you Megan and wish you were there to enjoy some of Carl's obnoxious behavior :0) Oh Ann Carl and I had a piece of Carmal Pecan Silk Supreme!!!! Yummmm, I should be starving myself today after all thoses calories :0(

P.S.S. Stacey!!!! Thanks for stopping by to visit us, it is so good to have you close by us here :0) You are sooo Wonderful Girlfriend!!!


Tuesday, October 12, 2004 4:03 PM CDT

Hello to everyone this Tuesday!!!

Thank you for checking in on Carl, and Thank you for your notes in the guestbook, your phone calls, and Prayers!!!

God is actively working Miracles in Carl, and we are witness to HIS Love each day we are Blessed to share with this Happy energetic little guy!!! Each smile Carl brings to another face, is a Ray of sunshine and a gentle reminder of HIS gift to us each day. Carl has been busy spreading sunshine all over the hospital this week :0)

Carl gets a dose of Vancomycin every 8 hours, and is unhooked between doses. He is allowed out on pass, but he chooses to stay here and play. He is enjoying all of the attention from the childlife staff, and he is having so much fun with his friend Maya right across the hall to visit and play with too!!! Maya has not been feeling well, so I have to remind Carl to let Maya rest so she gets to feeling better. She is such a precious little princess, it is so fun to watch a little girl playing for a change :0) She Loves Dora, and pretty things :0) Please keep Maya in your Prayers, as she may be spending a couple of weeks here before she can go back home.

MAYA'S PAGE

This morning I received my RN training for (IVAD)Implanted Vascular Access Device: Accessing, which included 7 pages of written instruction, a couple pages were for drawing blood and cultures, both of which are good to know as well. I am actually greatful for the training, both of the sweet nurses helping were very good and showed me the proper sterile techniques that are so very Important!!! We will get perscriptions for all our supplies, and should be all set to handle port accesses when we are discharged.

I just got a call from Sara Gosse (Sweet Megans Mom) and Carl and I are going to meet Sara for supper at Bakers Square in a little bit!!! So I will sign off, so I can go round up Carl to get ready to go!!!

Have A Great Evening and we will update more tomorrow!!!

Love

Kelly & Carl


Monday, October 11, 2004 9:26 AM CDT

Good morning everyone!!!

The above ADORABLE picture is of Carl with his little friend Devin, who was at the Hosp. yesterday visiting with Holly & Maya and some of thier other friends that they met on the internet who are here for appts. today!!! It is always so fun to visit with friends we know, that we have followe their journey for over two years too. Both Holly & Maya, and Karla with Baby Jacob and thier family were all staying at the Donald House back when Carl was first diagnosed. We became friends, and enjoy getting together each time our paths cross here in Rochester. We were saying that we will have to all get together on a non-medical grounds somewhere and spend some time with one another!!! Little Devin and Carl enjoyed playing with play-dough, riding the halls on the three wheelers, and then they had a little pizza party together for supper :0) Tom and the kids were also here yesterday, they came on Saturday night, and then left to head back home in the early evening Sunday. Carl always likes to have Sam and Sissy here with us too!!! It makes our stay more of a family experience when we can all be together, and it breaks up some of the long days of the same-old.

Carl's temps have been better, not spiking so high, just 99. temps off and on, but to me that is considered a temp, because he usually keeps a low temp. The question is if they will pull his port, put in a IV in his hand temporarily until the infection is cleared, and the antibiotics have run their course, then putting back in a new port. Or leaving his port in, and hoping the infection clears and we have no re-occurance of this infection??? I am in favor of pulling the port, even though it may not be necessary. I am thinking about our short-term plans/goal to get Carl started on the Phase I study (IL-12/IL-2) in the upcoming weeks, and would hate to see him set back by having this infection cause complications again before, or during the start of this trial. This morning when I got up, I asked the nurse to check to see if they had scheduled surgery for this morning, because I didn't want to feed Carl anything if he should be NPO. She paged the docs and then came back in to say, No not today. Then one of the residents came in for her routine morning check on Carl, and she said "I am sorry about the confusion about the surgery" "We have not set anything up or contacted the surgerons etc." Well I just told here that I wanted to be sure, before I fed Carl anything, because there has been at least two occasions where transport people have showed up to get Carl for surgery, that I knew nothing about prior to them coming (I knew it would be happening, but was not iformed exactly when) So anyway, I do know that nothing will take place today yet. I am not sure how long we will be here either? It will probably depend on this port issue too. Carl is due for his second Infusion of Gemzar on Thursday as well, so maybe it will work that he is still here to get that done???

We don't know much else, just trying to survive the day in and out hospital routine. Holly (Maya's mom) made reference to ground hog day in her latest journal, and I can totally relate to that feeling. We wake up each day, and it starts out and progresses just like the last. The days seem to mesh together, and you forget that you have been doing this for a week already... Pretty crazy!!!!! It is a good thing the nurses change, or we would really get confused :0)

The doctor just came in for rounds, and the plan is to keep Carl here until after his Thursday chemo. So we will get back home Thursday after that, and then finish his home IV schedule of Vancomycin, then culture his line again a few days after the antibiotics are complete. If Carl's culture comes up positive, then his port will get pulled. I also discussed taking over doing Carl's port accesses at home, to assure more consistency of handling his port. His last line infection was about August 16th, so this is becoming way too frequent and inconvienient, and extremely costly, with both time and money. I know these infections can occure and are often nobodys fault, but with proper cleaning, and handling, they may be highly avoidable. The nurses will be setting up a training session for me to practice a port access before we go home. Even without training I think I could handle it, as I have watched this done a hundred times or more!!!

I hope you all have a Wonderful day, and find many Blessings all week long!!!!

Thank you for all of your Prayer Power, and for all of your notes and well wishes!!!!!

Please remember all of our friends in Prayer that are also battleing NB and for all the Angels and their Loving parents that miss them so much. And for all the other children with other forms of cancer or illeness.

Love to all

Kelly & Carl


Saturday, October 9, 2004 7:47 AM CDT

Good Morning to everyone!!!

Carl's culture did grow a Staph type bacteria, we finally heard the news last night. Yesterday morning it was still negative, leaving us all very surprised, since the whole scheme of things was so typical of a line infection. They have not yet identified what strain we are dealing with, but hopefully will find that out soon. Carl has been treating on Vancomycin since Thursday, so with any luck this was the right mix that should work on whatever type it may be. I do have my concerns however, since the fevers are continuing, it seems about every eight to twelve hours he spikes another temp. I wonder why, because in the past, his fevers stop within twelve hours or so. Today some time we should have more information to go on.

I always believe to everything is a purpose? And even when not so good things happen, we can believe there is a reason for this somewhere, but we don't always understand right away. Many times we are Blessed to see that "reason" and find that understanding (what gift from ABOVE) I have been wondering this since Thursday, "what purpose" as I DO Believe there is a course of events or happening/s for a "reason" with Carl's infection that has come on??? I keep looking, and wondering, and have my antennas out to try to pick up something that may occure to explain this whole process??? I do know that an understanding may not be clear for some time, or it may come to me when I am not trying to see, but then it will make sense later?? Does any of this make sense to you?? I guess I have had much too much time on my hands to think about things, but I do believe in purpose, and it is a GIFT when we do see the light!!!

Other than the fevers, when Carl is feeling well, he is very well, just as always, on the go and not wanting to take a break or rest :0) We were so Greatful, Anutie Sheila came yesterday morning to bring us some clothes, and she was able to stay and visit with us for awhile!!! We were able to unhook Carl for a couple of hours, so we decided to get him out and go across the street to the Honker for lunch. He started to feel a little warm just as we were leaving. When we got over there, Carl was not himself and was starting to shiver, with his lip quivering. So I brought him back right away, Auntie Sheila waited for our food and would bring that back to our room. Sure enough when we checked Carl's temp, it was on its way up and the whole picture was starting to resemble the one from Thursday in the PITC when Carl had his seizure. We were lucky to get his temp down, and no complications this time. We are trying to watch his temp closly and start Tylenol or Ibuprofin right at 99. to avoid his fever shooting up so quickly.

Shortly after Auntie Sheila left to go back home, Deb and Andrew stopped by the Hospital (Carl's friend Andrew from the Donald House) They brought Carl and Sam a "Homer Hankie" How very sweet and much appreciated!!! Then, Megan Gosse came to visit, and brought Carl his favorite food ~ Chicken Nuggets in a Happy Meal!!! Carl played and fooled around and made Megan laugh as usual, Then Stacey came by when she was done with work!!! It was Great to have company from all of you yesterday, THANK YOU ALL SO MUCH for making our day!!!! Not only did we get visitors, but our Friends Holly with her little sweetie Maya were inpatient right across the hall from us, so we were able to visit with them for a little while!!! Also Karla with her precious Jacob, was visiting Holly and Maya, so we got to see them too!!! A very nice added bonus, is to know your neighbors in the Hospital :0)

Today we will play, and try to keep Carl's fever under control and wait for more information on his infection. It may be that his antibiotics will be changed, based on what strain is identified? Or another possibility would be to have his port pulled, depending if this is the same type as last time (prelim reports showing it may be?) However the case, we will enjoy our day, as it looks like it will be a Beautiful sunny day :0) We may be allowed out on pass for a couple of hours, so we may be able to go do something??? There is a new Halloween shop in town that I have been wanting to get to :0) We have a job to find Sam a costume!!! We found Carl one a couple of weeks ago, but could not find one in Sam's size. That may be on our to-do-list today!!!

We will miss Mandi's baby shower today :0( But we will be thinking about all of our family and friends that are home this weekend to be there, we will miss all of you. We hope it is alot of fun, and that Mandi makes Wonderful Memories of her special day, In preparation of those two little (baby boy & baby girl) Robinson babies!!!

Please keep the Prayers coming strong for Carl during his hospital stay, and for all of the other little children especially Maya who is here recovering from surgery.

Have a Beautiful day in the Lord

Love

Kelly & Carl


Thursday, October 7, 2004 3:41 PM CDT

Good Afternoon everyone!!!

St. Mary's Hospital room 3-104
Phone no. 507-287-4600



It is hard to believe our little smiley "Twins wanna-be" in the above picture (taken yesterday) is laying in bed tired, recovering from a febrile seizure. When Carl woke this morning, he felt warm :0( He had a 99. temp. I gave him some tylenol, and we left for Rochester. He was feeling ok, but not as active in the PITC while getting his chemo. We were trying to work on his beaded bracelets for his aunties that are all coming home this weekend. Carl felt tired, and mostly rested while he watched Home Alone 3. After his chemo was done, and during the flush, he started to chill, and shiver terribly. I took his temp but it was only about 100. I knew with the shivering he was soon to spike a temp and could easily seiz. I gave him some tylenol and within 20 minutes he had a seizure :0( This one was tougher than the others, and the Doctor was concerned enough to want to admit him to the ICU. He did come around and respond shortly after, so the order was changed to admit him to the floor. We were transfered to the floor, and Carl has been sleeping off and on ever since. We are stronly suspecting a line infection AGAIN!!! Carl received a dose of Cefapine, and they went ahead and started Vancomycin already, as this is the typical for these line infections. Dr. Arndt is on service today, and she said that Carl will be getting ten days of antibiotics no matter what!!!

I guess I am feeling like I am not sure what hit me right now, and I know Carl will be wondering the same when he wakes up and gets ready to ride the halls. We didn't plan for a hospital admission, even though Carl was starting a temp already this moring. I figured we would come back home after chemo, and keep a close eye on him. I guess we are Lucky this all happened when it did, and while we were already here, otherwise we would most likely had to come back very soon anyway. Carl's fever is back to normal, THANK GOD!!! We were worried about a second seizure, as it was not coming down for some time. This is a total surprise to us, as Carl has been feeling so well and had no signs of any illness or infection.

On a good note Carl's platelets were 127,000 today!!!!! His marrow is indeed working, and he is making those platelets on his own!!! We are very Blessed!!! I am also very Thankful that Carl got his chemo in before any of this happened today, another Blessing!!!!!

Yes we did enjoy yet another exciting Twins/Yankees Game!! We are ready to hoot and hollar tomorrow night, I guess we will be doing it here at the Hospital. Maybe Bryan will come and stay with Carl and Mom for the weekend to keep us company, we will see!!! Right now it looks like we will not be home for Mandi's shower, and possibly for a few days at least until we figure out what is going on, or Carl's cultures (If positive) come back negative.

Thank you all for checking in on Carl today, and for all of your Awesome Prayers that are giving us strength to ride on through this roller-coaster that we ride.

Love & Prayers

Kelly


Wednesday, October 6, 2004 10:58 AM CDT

Carl's quote this morning ~ "When I grow up, I want to play baseball, and wear this shirt!!!" :0)

How About those Twins!!!!!

REMINDER~

"Open House Baby Shower" for Mandi Robinson!!! This will be on Saturday October 9th at 1:00 PM at the Morton City Hall!!! Come one and Come all!!! The shower will be put on by all of the Aunties, we will be serving Hot turkey sandwiches, Salads & Deserts!! Matt & Mandi are expecting twins ~ Both a little boy!!! And a little girl!!! In December!!!!! We look forward to seeing everyone there on Saturday!!!!! Please Pass the word to anyone that does not already know!!!

We enjoyed the game last night, all together piled up on our bed. The kids spilled water in the living room satelite dish box last weekend, so we are out of TV viewing in the livingroom for now. We had fun cheering and clapping for our Twins!!!

We are all well, and Loving this PERFECT fall weather we are Blessed with!!! These are the days we will remember, and long for, when the snow starts to fly, and wind starts to whip around. Carl is outside with a bucket right now, looking for frogs, or worms or whatever he can find. We had Sam's conference last night, and his sweet teacher Miss Jones, says that Sam is all about being outside and hands on learning!! How true for both of these little guys!!! A couple of months ago, we ventured into a Learning/Toy store while in Rochester (finding Carl a toy for a reward for being good during ct scans) and we found these cute frogs in an aquarium :0) And next to it, a stack of boxes/kits to grow-a-frog. Well after not sending in for our tadpole for weeks, we finally did it, and we also got a second tadpole to grow :0) The kids are having fun watching their little critters get bigger, and sprout legs!!! It is pretty amazing to watch!!! What is nice about these frogs is that they stay in water all the time, and are not picked up and handled :0) So they can have their frogs inside the house, and keep them too!!!

Tomorrow Carl and I will head back to Rochester for a count check, and chemo (90 Min. IV infusion of Gemzar) then we should be back home in time for supper!!! We are sure Carl's platelets will have held strong, so we should not need a transfusion this time!!!!! How wonderful it feels to know that we have had our Prayers answered!!! I was beginning to fear that Carl's platelets would never recover, and we would be seeing the start of the end of the road for this journey. We have been given more time, and a chance, that is all I have Prayed for!!!!!

Have a Beautiful day in the Lord

Praise the Lord for he is sooo Good!!!!!

GOD'S GIFT OF TRUTH
FOR YOUR TIME WITH HIM

* God honors your desire to come to him-
however you choose to come.

* Faithfulness matters more to God than dura-
tion. But as you grow closer to the Lord,
chances are your time with him will grow.

* If you let them, times of trouble can mature
your prayer life.

* Prayer still works even when you're full of
questions. And don't be afraid to bring your
questions and doublts to the Lord.

* Always remember to say Thank You when you
pray. It's not just a question of manners, but
of remembering how blessed you really are.

-Emilie Barnes.

Please keep all the NB warriors & Angels in your Prayers, and all the children everywhere battling other forms of pediatric cancer.

Love & Prayers

Kelly & Tom
& Family


Monday, October 4, 2004 6:25 AM CDT

Carl and I just got back from the Hosp. and I couldn't wait to update!!!!!

Platelets ~ 89 WOOOHOOOO!!!!!!!!
HGB ~ 12
WBC ~ 3.5


Today is a day of CELEBRATION!!!!!!!

Thank you Lord for hearing our Prayers, we are so very Blessed!!!!!!

Thank you all for all your Prayers, this means that Carl's platelets are starting to rebound, and his marrow is functioning!!!! We will be able to go on to a Phase I trial with Carl!!!! We were given the chance for more time!!! What a gift this truly is!!!

Thank you, and May God Bless you all

*****************************************************************


Good Morning to everyone!!!!!

Before I begin, I would like to announce the "Open House Baby Shower" for Mandi Robinson!!! This will be on Saturday October 9th at 1:00 PM at the Morton City Hall!!! Come one and Come all!!! The shower will be put on by all of the Aunties, we will be serving Hot turkey sandwiches, Salads & Deserts!! Matt & Mandi are expecting twins ~ Both a little boy!!! And a little girl!!! In December!!!!! We look forward to seeing everyone there on Saturday!!!!! Please Pass the word to anyone that does not already know!!!

We hope you all had a Beautiful weekend!!! We had cooler weather to start out with, but then it got just Perfect yesterday!!! We enjoyed our time with Auntie Jill, Nick & Kiri, & Auntie Joy and Uncle Clair, who were all home this weekend!!! Bryan was here as well, so Nick & Bryan got to hang out together for a couple of days :0) Carl and Sam always like it when Nickie is here too, in fact we believe Sam and Nick were cut from the same cloth :0) We spent some time with Grandma Phyllis, and yesterday we all gathered to share Bryan's Ice Cream Cake "Belated B-day" at Woodale, and even had my Mom join us!! Grandma Phyllis is feeling better, and we think her spirits have improved!!!

Carl has been feeling well all weekend!! Today we will go in to the Redwood Hosp. to check his blood counts, and transfuse if needed. We are hoping and Praying his platelets are starting to rebound a little. We usually start to see some bleeding around his Mic-Key button about this time, after his latest platelet transfusion (last was on Thursday) but he has not had any bleeding so far!!! We will check his counts again on Thursday at Mayo, when we return to begin Carl's second Cycle of Gemzar. The second cycle will consist of one Gemzar infusion on Thursday over 90 minutes, then the following Thursday another infusion. Then two weeks off to rest, then we will see Dr. Anderson again on October 28th. We will also repeat the abdominal CT that Thursday. Carl's urine test ~ vma/hva will need to be collected and sent in after his second chemo infusion so that it is done in time for our Dr.s appt.

Thank you all for checking in on Carl, and for keeping him lifted up in Prayer!! We Appreciate all of your support, and knowing that we have so many wonderful family and friends out there that care so much about Carl and all of us!!! We never feel alone in this journey, we know we have HIM and all of YOU by our side ALWAYS!!!

To plow is to pray - to plant is to prophesy,
and the harvest answers and fulfills.
-R. G. Ingersoll, About Farming IN Illinois

Abundance is . . . tereacotta urns full of pink geraniums and blue ageratum flanking the entrance to your home.

Abundance is . . . ripe southern peaches dripping
with juice and flavor.

Abundance is . . . kissing a baby's cheek.

Candy Paull.

Have a Beatiful day everyone!!!! Thank the Lord for all of his many Blessings

Love

Kelly & Tom
& Family


Thursday, September 30, 2004 1:25 PM CDT

Good Afternoon Prayer Warriors!!!!!!!!!!

Carl is now at the PITC getting his platelet transfusion, and then we will be heading back home!!! Dad is with Carl, and I am over cleaning our room at the Donald House :0) Well sort of taking a break to do an update :0)

We did Carl's CT'S yesterday, and got his blood work done in the morning too!!! We ended up seeing Dr. Anderson earlier, and swaping with the PITC (transfusion appt)time, so that worked out very well. Carl's platelet count was 11 yesterday and today!!! We are Praying that this is a sign that it is starting to hold its own, and maybe even be recovering!!!!! Carl's HGB and WTC are good, I don't have my lab papers with to give you the exact figures, but his ANC is Great so we can stop the shots for now!!!

As for the CT reports, the head CT was clear!!!! Jokingly Dr. Anderson told Carl that he still has a brain :0) And the Best news of all is that the Liver CT shows some response to the chemo!!!! The spots are smaller!!! Carl's vma/hva was slightly lower, not as much as I had hoped for but lower at all is an improvement, and We will take this as stability for now and Rejoice with this Wonderful news!!!! THANK YOU LORD!!!!! These are not huge steps but they are small steps, and small steps are steps nevertheless!!!!! Carl has been Happy and Playful, we allowed him to take his little three wheel trike to both the PITC and the Clinic today :0) It was very priceless to watch his little legs peddling so fast up the hills and down the hallways. We of course had to remind him to slow down and watch out for other people, about every 10 feet :0) But we couldn't be Happier ourselves, or feel more Blessed!!!

Thank you all for your Awesome Prayers for Carl's healing!!

I Loved this so much, I want to add this again, as it has so much meaning to us, especially today!!!!!

What is faith?

Faith is the eye by which we look to Jesus. A dim-Sighted eye is still an eye; a weeping eye is still an eye. Faith is the hand with which we lay hold of Jesus. A trembling hand is still a hand. And he is a believer when his heart within him trembles when he touches the Hem of the Saviours's garment, that he may be healed. Faith is the tongue by which we taste how good the Lord is. A feverish tongue is nevertheless a tongue. And even then we may believe, when we are without The smallest portion of comfort; for our faith is founded Not upon feelings, but upon the promises of God. Faith is the foot by which we go to Jesus. A lame foot is still a foot. he who comes slowly, nevertheless comes.
-George Mueller

Today is so Beautiful, the air is so clean and fresh feeling!!! Almost more like a spring day :0) It feels Wonderful!!!!!! Wishes to you all for a Beautiful Day in the Lord

Please keep lexy in your Prayers, her latest scans were not with imporvement. She is a beautiful little girl that Carl met and played with in Chicago!!! We met her parents and Grandparents and they are the most Loving people!!! Lexy's site is LEXY'S PAGE

Please keep the Prayers coming for Sweet Sophia, who is almost ready to come home from her transplant!!!! GO SOPHIA!!!!! SOPHIA'S PAGE

Please Pray for all of the NB warriors and Angels, and all of their loving parents.


Love & Prayers

Kelly & Tom
& Family


Tuesday, September 28, 2004 10:41 AM CDT

Good Morning to everyone!!!

As you can see by the new picture, Carl is up and out with Uncle Chuck, in the Beautiful fall weather farming!!! I didn't have to ask him twice if he wanted to ride along with Uncle Chuck today :0) I was waiting for him to wake up, and I finally went in and asked him if he would like to go farming with Uncle Chuck, because he called and could take him with for awhile today? Carl turned his head over with a smile :0) Then I told him to let me know when he was ready to get up and get dressed. He nodded his head yes, and then 20 seconds later Carl said "I'm ready to get up!" :0)

Yesterday we spent most of the day at the Redwood Falls Hospital. Carl was having some bleeding around his g-tube, and I became concerend about this going on all day and until Tuesday evening when we were scheduled to bring him in for his platelets. I phoned the Hosp. and talked to Dr. Medrud, who also thought Carl should be checked and get platelets Monday. So we went in for blood work, Carl's platelets were 9, and HGB was 8.5, so Carl got both platelets and red cells. The HGB is likely due to the bleeding from the low plateles. Carl's white count has been ok, it was very high last Thursday as we started to give him the gcsf shots. I backed off for a few days, because it was 17.9 on Thursday. Yesterday it was back down to 1.3, so we started the shots again to boost his whites back up. He is still feeling very good, and in Excellent spirits!!! He is a Happy playful little guy, and I still wish I could keep up to his energy level. When we were leaving the Hospital last night, Carl insisted on taking the steps, and then he ran all the way to the car :0) The nurses were joking that he wanted to get the heck out of there fast!!!! :0)

Tomorrow we head back to Rochester. Carl will be having a head ct tomorrow. I requested this because of the nose bleeding Carl was having previously. I am sure it was nothing serious, but I would rather be cautious than not. Then on Thursday Carl will have a body CT, blood work and then see Dr. Anderson. I am sure he will probably get platelets again on Thursday as he will most likely be needing them. We had set his transfusion schedule up for Tuesdays and Fridays, but ever since we have been doing this, we have been changing it to Mondays and Thursdays, so I will check to see if we can just plan on those days in the future, as that seems to be when he is most needing the platelets. We are still Praying very hard that Carl's marrow and platelets start to work and make their own soon. I am not sure how long this can go on, before one makes the determination that they just are not going to ever recover? We are Praying that it will still turn around but just needs more time, and that the chemo has helped to surpress some of the NB in Carl's marrow to help this whole process!!! We also turned in a vma/hva urine test last week, so we will see how this has changed since the last results. His latest vma/hva was 18.6/24.0 normal is 13.0/13.5 So we Pray that these values come down to indicate the NB is being reduced in his body!!!

May you all have a Beautiful Day!!!! Wishes for Bright Fall colors, and warm sunshine over your shoulders!!!

Please Remember all the NB warriors, and Angels in your Prayers. And thier parents that are struggling and heartbroken with loss and grief.

We must not hope to be mowers,
And to gather the ripe gold ears,
Unless we have first been sowers
And watered the furrows with tears.
It is not just as we take it,
This mystical field will yield as we make it
A harvest of thorns or of flowers.
-Johann Wolfgang Von Goethe

Love & Prayers

Kelly & Tom
& Family


Friday, September 24, 2004 9:17 AM CDT

Saturday evening update ~ Sept. 25th

Just a little update to let you all know that Carl has been fever free all day, and we have not heard anything about his cultures growing so we are very Happy and very Blessed!!! Thank you for all of your Prayers that are working wonders in our lives!!!

We have had the most Beautiful Fall day :0) Sunny and very pleasant!!! We have Sarah & Kate here with us today, and they are enjoying the boys and Sydney so much!!!

Have a Wonderful evening everyone!!! And a Beautiful Sunday in the Lord

What is faith?

Faith is the eye by which we look to Jesus. A dim-Sighted eye is still an eye; a weeping eye is still an eye. Faith is the hand with which we lay hold of Jesus. A trembling hand is still a hand. And he is a believer
Whose heart within him trembles when he touches the Hem of the Saviours's garment, that he may be healed. Faith is the tongue by which we taste how good the Lord is. A feverish tongue is nevertheless a tongue. And even then we may believe, when we are without The smallest portion of comfort; for our faith is founded Not upon feelings, but upon the promises of God. Faith is the foot by which we go to Jesus. A lame foot is still a foot. he who comes slowly, nevertheless comes.
-George Mueller

Love & Prayers

Kelly

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~




Good Morning and Happy Friday to all!!!

Pics from last weekend ~ CAR SHOW ~ CAMP SNOOPY

It is a chilly morning and Carl is still snuggled in bed snoozing. . . . zzzzzzzzzzzz

Yesterday we visited Grandma Phyllis at Woodale, and Grandma Dorothy & Grandpa Bill. They were having a September Birthday celebration, and My mom's birthday is today!!!! Grandma Phyllis is back at Woodale after spending a few days at the Hospital. It will take some time for her to recover, and get around again, she seems like her spirts are very down, and it is hard to see her like this. Please keep Carl's Grandma's and Grandpa's in your Prayers, they are all so fragile and dear to us.

During our visit with Grandparents, Carl felt warm so I asked one of the Sweet nurses to check his temp for me. It was about 99.9. We left shortly after that, and when we got home it had spiked to 101. So we packed up and went to the Hospital for line cultures and antibiotic. Carl also got his Friday platelet transfusion early, as his platelets would be expiring by midnight, so we just did it early, otherwise we would have had to wait til tonight. Which would not have mattered really, because Carl will need to go back in for a second dose of antibiotic today. We are Praying this is NOT another line infection. While I was up at the Hospital with Carl, Auntie Jill and Auntie Janet came up to see us :0) Auntie Jill suggested she stay with Carl so I could get home and with the other kids for homework and to get them ready for bed!!! Thanks Jill for your help, it did work out Great!!!!!!!

Carl's fever continued in to the night, and of course made us very nervous. He has had several seizures from High temps in the past, and it is always a fear. Right now with his platelet issues, we can only give him Tylenol, Motrin can cause bleeding so we are limited to only Tylenol. I always preferred Motrin for fevers, it seems that it worked faster and better. If there is a bacteria growing in his culture, we should hopefully hear this later today or tonight. I guess today we will have to tentatively prepare to pack up and head back to Rochester if he should have a line infection. Our lives are forever on this uncertain path, we can never tell from day to day what will transpire. I got a call from one of the Peds/Onc scheduling nurses this morning about Carl's scans that are scheduled for next Thursday. After I hung up, I thought, well the way things go, we may not keep those appts, and we may be in Rochester sooner and the whole scheme of things change depending on these culture results.

I have not heard anything back yet about any options for Carl, after I emailed to Dr. Maris at CHOP. He did tell me that he would be talking to Dr. Anderson, and/or one of them would get back to us. I would not be surprised if we do not hear anything until we are seen back at Mayo with Carl. Another fear of Carl landing back at St. Mary's with a line infection, is that we would most likely be dealing with one of the other doctors. We have received the most support from Dr. Anderson, and he has been helping us in any way possible to keep Carl with us as long as we can. He respects our wishes, to "Try" and not just give up because statistically Carl should not still be with us. We appreciate all of his dedicated help, and care. It can be very disheartening, and stressful when we don't feel that same support from other doctors.

Carl is keeping his High sprit and energy flowing for all of us to keep hope!!! He is truly Amazing and such a little trooper!!! He has been Happy, and bubbly, the other day he made about 7 bracelets from beads, he wore 6 of them and gave me one :0) Then he gave Auntie Janet and Auntie Jill one at the Hospital last night!! We told him he was going to have to make all of his Aunties a bracelet, or they would be very jealous :0) Earlier that day, Carl went out and picked Mom a little bouquet of "Mommy flowers" It was so precious, and I wondered if this was the last of the mommy flowers to be found for this season? Carl can be so naughty at times, and full of such negative energy, but then he can be the sweetest little Angel and bring tears to my eyes the next moment. I Pray that next spring and summer we see thousands of Mommy flowers and I find two little outstretched fists bursting with beautiful yellow flowers, and that precious smile to brighten Mommys day!!!!!

Please continue to Pray very hard for Carl's Miracle!!!

Abundance is. . . . .

Abundance is. . . a smiling four-year old child.

Abundance is. . . a full box of kittens.

Abundance is. . . the first day you feel better after

having the flu.

Abundance is. . . a crocus peeking it's head out of the snow.

Abundance is. . . the little tight green buds of spring.

Candy Paull.

Love & Prayers

Kelly & Tom
& Family


Wednesday, September 22, 2004 8:42 AM CDT

Good Morning to all!!!

Thank you for visiting Carl's page, and for all of your Powerful Prayers!!!

Carl and I were in the PITC at St. Mary's yesterday from 9:00am until 6:00pm. Carl got a second Infusion of Gemzar (chemo) then Platelets, then red cells. His counts are still low, and not recovering. His platelets were 11, and red cells 8.1. The high 80,000 on Friday night, was from his platelet transfusion on Thursday. Platelets are only temporary, lasting a couple of days. His bone marrow is still not making platelets on its own? We are still hoping this will turn around, and it will just take some time. Carl has had two infusions of Gemzar now, so we are curious to see how this has helped him. We will go back to Mayo next Thursday to see Dr. Anderson, and to repeat the abdominal ct and check urine again. I am thinking it would be good to check bone marrows and a mibg or pet scan again, but we will see? I have also emailed to the NANT Dr. in Wisconsin, and also to Dr. Maris at CHOP to see if/what options we may have with Carl's platelet issues??

Carl continues to feel well, no complaints of any pain, and his performance has not stopped a bit!!! I am sure Deb and Andrew are getting a much needed rest after Carl has been terrorizing them for the past couple of days at the Donald House :0) Carl is busy playing with Pika today, and he has let a couple cats in to eat already, so I have been busy throwing animals out left and right this morning. It looks like a Beautiful day today, after the rain they had here yesterday, so Carl is ready to get outside and burn off some of his energy!!!! I only wish I could borrow half of Carl's energy to get some of the things done that needs to get done around the house!!! Maybe I can put him to work :0)

Please keep the Prayers coming for Carl as we still are so uncertain of what will be next in our lives. Keep Sophia in your prayers as she is in transplant in Boston. And remember all of our other friends as they have struggles of their own.

Grandma Phyllis is in the Redwood Hospital getting better, Please keep her in your Prayers for a speedy recover, and to be feeling better, so she can get back up on her feet and get around again soon!!!

Thank you all, and God Bless+

Kelly & Tom
& Family


Friday, September 17, 2004 12:02 AM CDT


Here are some quick pics from Yesterday CAMP SNOOPY

Mary Hollway another NB Mom that we met with her daughter Molly, shared these pics with our whole NB family. We also met up with the Hammers and had a Wonderful day!!!!!

Saturday was as equally Awesome!!! The Car show was so fun, the kids had a great time, and we Celebrated Bryan's Birthday with the whole group!!!! Thanks to Stacey and everyone that put on this Fantastic Day and that had a part in making Bryan's day so special!!!!

Carl and I are in Rochester, we arrived on Friday night after Carl began to have some bleeding from his nose. It turned out that his platelets were 80,000!!! So no need for transfusion, but I am still a little worried about the nose bleeding, as he has had a little more bleeding since?? Tomorrow Carl will get his second dose of Gemzar (chemo) and platelets, also red cells as his Hmg was near transfusion level on Friday night, so I am sure he will get red cells too.

I will add more pics from our entire weekend after we get back home, it is so much easier to work on them at home!!!

Have a Great Evening everyone and Thank you for your Prayers and support Always!!!!

Love

Kelly & Carl




Hello and Happy Friday to everyone!!!

Wishes to you all for a Beautiful Sunshine day, it looks as though it will be one here :0) This is my favorite time of year, when the weather is a little cooler, and the sunshine shows off all the beauty of the fall colors!!!

We are doing well here!!! Carl has been soo bored with Sam in school. He just doesn't seem to know what to do with himself :0( Mom is ok, but not the same as a friend to play with. Yesterday Carl came to me upset "I have Nobody to play with me!!!" Carl even asked me "When are we going back to Rochester?" So I suggested we call to see if his little friend Peyton could come and spend the day with us on Friday!!! She was able to!!! Carl and Peyton are Having such a ball thinking up things to do together!!! Carl slept in almost until Peyton arrived, so he had not eaten breakfast yet. Peyton came and then the two of them were in and out of the house about 10 times before I had breakfast ready. I called out to Carl that their breakfast was ready :0) As they climbed up the steps to come in the house I could hear Peyton telling Carl "I'm not even hungry" :0) I chuckled, and thought this little girl was probably thinking this crazy Robinson lady is trying to force feed me after I already ate breakfast!!! I guess it just comes with the territory, It is natural for a Robinson to try to feed everyone!!! Anyway the two thought it would be fun to bring their breakfast up to the fort to eat:0) Peyton said "This is just like camping"!! They are having fun, and it warms my heart and makes me smile to watch these two enjoy playing together!!!! Carl is in his glory today, and such a Blessing to see him so Happy and Excited!!!

On Wednesday night as I was putting Carl to bed, I noticed he felt warm. He did have a temp of 100, so Tom and I got him ready and made our way to the Redwood ER for line cultures and antibiotic,, the usual schpiel. His blood was checked too, and to our displeasure, his platelet level was at 11. So instead of doing platelets on Friday as we had scheduled, we set it up to do them on Thursday along with his second dose of Roseffen antibiotic. Carl has been feeling well, and fever free ever since?? We have not heard any word on the cultures growing so we are Praying he is infection free, and nothing else is going on!!! We feared if we held off for a day or two on checking him, we would be that further off from getting results and him started on any treatment. I hope we don't have to deal with any line infections for a long time, it has been a couple weeks since he has been off his home IV antibiotics for the last line infection. It has to be hard on his system with all of the antibiotics too!!!

Our weekend should be fun-filled and Enjoyable!!! Tomorrow is Bryan's birthday ~ He will be *17* years old!!!! WOW I can't believe I am old enough to have a 17 year old YIKES!!! We will be going to Lake City to the Camp Jornada fundraiser!!! It will be an Antique car Ralley!!! We are looking forward to seeing some of our Camp friends and counselors!!!! Then on Sunday, we will be heading to the Mall Of America for the Make A Wish Annual Camp Snoopy Fun Day!!!!!! We went last year and had such an Awesome time there!!! The kids are Excited to try out the new rides and enjoy a day of non~stop fun and Excitement!!!!! We are Praying that Carl's platelets hold out and allow us to take in all of this fun stuff before we return to Mayo on Tuesday for his next scheduled infusion.

Please keep all our friends in your Prayers, all of the children we have met along Carl's journey, both with NB and other cancer or illness.

Keep little Sophia in your Prayers as she is starting her bone marrow transplant, and she needs lots of healing Prayers for a speedy recovery!!! SOPHIA'S PAGE

Sing to the LORD with thanksgiving;
make melody to our GOD upon the lyre!
He covers the heavens with clouds,
He prepares the rain for the earth,
He makes grass grow upon the hills.
Psalm 147:7-8

It all goes by so fast. . . Oh earth, you're too wonderful for anybody to realize you . . . Do any human beings ever realize life while they live it - every, every minute?
-Thornton Wilder, Our Town

Love & Prayers to all

Kelly & Tom
& Family

P.S. If you get a chance, Please stop by Bryan's page and wish him a HAPPY 17TH BIRTHDAY!!!! I know it would mean the world to him!!!!! ~ Link above


Tuesday, September 14, 2004 8:59 PM CDT

Good Evening to all!!!

Thank you for stopping by, and for keeping those Awesome Prayers Flowing so strongly!!!!! We can feel them today, as we are filled with a sense of Peace, and confidence. We don't know if anything is necessarily better, we just feel lighter hearted, and the air feels clearer!!!

We met with Dr. Anderson this morning, and have opted to try the chemo Gemzar for a few weeks. This is a different agent than Carl has ever had, and it will hopefully be easy on his platelets. Dr Anderson said that there is a chance that Carl's platelet situation will improve from the chemo? It may help, or may not, but should not get worse. Carl is now scheduled to get platelet transfusions twice a week automatically, on Tuesdays and Fridays. He is also now labled "transfusion dependant" but we PRAY this is only temporary!!!

Carl's schedule will go something like this. Transfusion at Redwood on Friday. Chemo on Tuesday, with Platelets at Mayo. The chemo is a 90 minute IV infusion, then we will start gcsf shots to boost white counts. Then transfusion again on Friday 24th, then platelets on Tuesday the 28th at Redwood, then back to see Dr. Anderson on the 1st, and platelets if needed. When we return for our follow up we will re-evaluate Carl's situation to see how the chemo is helping. If the Platelets are up, then we will be checking to see about enrolling Carl in one of the NANT studies (preferably IL-12/IL2) Dr. Anderson has contacted Madison Wi Nant Hosp. about Carl for his potential enrollment. We were thinking more about Chicago, since we do have family and friends there, but I am not going to complain at this point, if we can get to WI with good Platelets!!! I would go to the moon for Carl if it meant a chance to beat this Neuroblastoma!!!!! Madison has a "Donald House" too and it is drivable for us!!!

Plan B if platelets don't recover to 100,000 Well we are not really sure?? There are a couple of other studies that don't require this higher platelet level. The CEP-701 only requires 50,000 and above (This would be Great right now!!!) then there is the Fenretinide study (16 pills a day) YIKES!!! We are also in the process of checking to see if it is acceptable to crush the pills, mix with cream (it needs fat to digest with for absorption) and then syringe into Carl's g-tube (Mic-Key button) Not sure if this is allowed for the study? Fenretinide is coming out in powder form, but not until early 2005. And if nothing else, more chemo, low dose?

Carl continues to prove he is a little fighter and wild man, as his performance in the doctors office is literally "out of control"!!! I am not sure what is going on, but I think he is getting messages from HIM above that he needs to prove he is feeling well, and that he really does have energy to burn, without any pain!!! He is proving that his exhistance in his present state, is truly a miracle every day!!!! He demonstrates that he is a Happy, Busy, Silly, Goofy, Crazy normal little boy (despite living with terminal cancer) and showing us all that we should NEVER underestimate the Power of Prayer!!!!! Carl is living Proof that Prayer is Powerful!!!!! And Always remember that there is POWER IN NUMBERS!!!!! So lets keep Praying for Carl's counts to recover, so that he can move on with treatment to beat this terrible disease forever!!!!!

GO CARL!!!!!!!!!!!!!!!!!!!!!!!!

Tom and I both drove down to Rochester today, because we wern't sure if Carl and I would be staying for a few days or coming home right away? We were glad we were able to come home right away, and enjoy the rest of the week at home, and enjoy how we are feeling.....That Life is good....right now... We are learning to know what it feels like to live each day to the fullest, and to live it like there is no tomorrow!!! What a gift that truly is, to know how to appreciate every moment as a gift, and to really feel that in your heart!!! What a gift to not take anything for granted. . . to live your life and feel it, this close to the bone is to truly "Get It" I'm not saying that I am so Happy to be one that "Gets it" I would much rather go on about my daily business, and not have to think about how it will feel to live my life without my precious baby... Hope is all we have to sustain us for now, Hope and life!!!! For as long as there is life (Carl running around like an out of control maniac) there is Hope.... Thank You Lord each and every day for our Crazy Carl, he keeps our minds in the right place, and makes us smile and laugh, and reminds us of your Love!!!!!

On the road trip we brought with the boys play walkie talkies :0) They worked to talk back and fourth on our drive. Carl enjoyed saying "Hi Dad" "What you doing?" "Can you hear me?" "WHAT?" over and over again, it was quite humerous!!! It made for entertainment down and back from Rochester!!! We also stopped at Sam's club on the way home. Carl always enjoys having all the samples they are dishing out in the food section :0) You can go grocery shopping, and have lunch all in one place!!! I picked up a case of Pineapple juice there. One of the NB Moms had suggested this to help raise Platelet counts, she swears by it!!! Since Carl will not drink it much, we can rely on his handy dandy g-tube for this little home remedy too!!!!

I wanted to ask for Prayers for Grandma Phyllis, she fell today and fractured her pelvis, and broke her wrist. She was having an insulin reaction and this was believed to be the culprit. She will be staying at Woodale for the time being until she is recovered. Please remember Grandma in your Prayers for a speedy recovery!!!!

Well it is getting late, well not actually but last night our power went out in the storm. We had no electric, and our alarm clock was not on either. So we stayed awake til nearly 1:30 waiting for the power to be restored, afraid to go to sleep as we were needing to get up early by 4:00 to get ready to head to Rochester. So needless to say, I am very tired tonight, and it will feel very good to hit the pillow soon!!!!

Thanks again for all of your Prayers!!!

How precious to me are thy thoughts, O God!
How vast is the sum of them! If I would count them,
they are more than the sand. When I awake, I am still with Thee.
Psalm 139 17-18

He Prayeth best, who Lovest best,
All things both great and small;
For the dear God who loveth us,
He made and Loveth all.
Samuel Taylor Coleridge

Please remember all the other NB warriors and Angels in your Prayers.

Little sweet Sophia is having a bone marrow transplant, please keep her in your Prayers!!!! GO SOPHIE!!!!! ~ Sophia's Page

Love & Hugs
Kelly & Tom
& Family


Monday, September 13, 2004 1:16 PM CDT

Good afternoon this Monday!!!


Carl's counts today ~

WBS 13.6 Normal - 4.8 to 10.8
HGB 10.7 Normal - 14.0 to 18.0
PLT 16 Normal - 150-400
ANC 38 Normal - 37-80

Needless to say Carl will be getting platelets today.

I am not sure what to say about Carl's count situation. We don't know if this is still from the chemo, or from the cancer? We are really at a loss right now???

At the suggestion of another Mom, I contaced Dr. Anderson to see if we could get Carl back to Mayo sooner than the 22nd. We are concerned about waiting that long to start some other type of chemo. If Carl still has 60% bone marrow involvement, it could be worse by then, if we don't get him started on something soon. This other Mom's little boy had about 100% marrow involvement, and came home from the Hospital with 0 counts and pneumonia. She told me that 60% is better than 100% and she thought it would be wise to get Carl back to the Dr. sooner, while we still have a chance. This other little boy became very sick, and became an Angel soon after. Dr. Anderson has suggested the chemo Gemcitabine before, and I had read this on our friend Jay's website that he is using the combination of Gemcitabine/Docetaxel. Dr. Anderson thought that this would be a better combination than the cytoxin combos, since it has been worse on these. So we are Praying we can start Carl on this tomorrow, and I think it is an outpatient regimen, so we can do this in the PITC easily!!! Virginia, if you are reading this, I will have to talk to you about how Jay is doing on this chemo!!! I also remember Dr. Anderson saying before that the Gemcitabine was a liver targeting chemo?

We don't know what our future holds, or how long we will be Blessed to keep Carl with us? We only Pray that HE continues to give us strength, and Faith to trust in his Plan for Carl, and to believe that HE will see us through. Please keep the Prayers coming for Carl's Miracle. God is in the business of Miracles, and there just may be one around the corner for Carl!!!!!!


Jesus said "If you have faith as a grain of mustard, you will say to this mountain Move from here to there, and it will move nothing will be impossible for you"
Matthew 17:20

God Bless+

Kelly


Thursday, September 9, 2004 8:21 PM CDT


To view Cabin/Fort pictures ~ click here

NEW FORT PICS

****************************************************************



Good Morning and Happy Friday to all!!!

Carl's counts are rising slowly, I had hopes of higher numbers today, but I will take what we got, as it is a start, and Pray for better!

WBC ~ 10.4 (normal 4.8 to 10.8) (high level due to gcsf shots)

HGB ~ 10.5 (normal 14.0 to 18.00) (transfuse at 8.0)

Plt ~ 39 (normal 150-400) (transfuse at 20)

ANC ~ 33 (normal 37-80)

Carl spent the night last night at Auntie Janet & Uncle Marks house. He is still with Auntie Janet today enjoying some quality time with his wonderful God Mother!!!

I will try to get some pictures added of the new cabin/fort. It sounds like the boys will be shingling this weekend, and if the weather is good, maybe two little campers will get to try out their new fort!!!

We will check Carl's counts again on Monday, and then every few days after that. We need his platelet count to recover to 100 in order to try one of the Phase I studies. I am not sure what we will do if not, possibly some other chemo to try to control things?? We are scheduled to return to Mayo on Sept 22nd.

Thank you for your Prayers and Support, Thank you for your comforting words and Love for Carl and our whole family.

God's Love and Blessings

Kelly

***************************************************************

Good Evening this Thursday!!!

Thank you for checking in on Carl today, I know many of you are looking for an update from yesterday.

We were very saddened to find Carl's counts still low and needing transfusions. Carl received both red cells and platelets again before we went home.

The abdominal ct results were just as disappointing, the liver spots are appearing larger than a couple of weeks ago?

The HVA/VMA urine test that I mailed in last week, was still showing pending on the computer? We questioned if it was lost, so we did another collection to turn in, and should have those results back later this week. A test was done right before the last cycle of chemo, so this test will be a good indicator if the chemo Carl just had worked on his NB at all?

We are hoping and Praying that Carl's counts start to recover soon allowing us more time, so that we can try something else, such as one of the studies we were looking at in Chicago.

We will do a count check on Friday and again on Monday, and transfuse if needed. Yesterday Carl's platelet count was 24, so we are Praying it begins to rise and stabilize.

last night and again tonight I gave Carl a gcsf shot for his white counts. Over the past week, his legs have been very bruised from the shot sites. Tonight I took off his bandaid from last night, and it was completely clear without a mark or bruise!!! This may be a sign that his platelets are coming back!!!! We Pray!!!!!

I will update more tomorrow after we check his counts in the morning. Please Pray very hard for Carl's counts to recover, we are keeping our hope alive, as long as Carl is as crazy and active as he is, we know that he is not giving up, and we are not giving up either!!!!!

On a lighter note, yesterday during our appointment with Dr. Anderson, Carl was the naughtiest little boy ever!!!! He was mouthy, and threw toys around the room. He even hurrled a stuffed bear at Dr. Anderson a couple of times, and left the exam room to go visiting in the hall with the nurses!!!! Dr. Anderson scored Carl 100n the lansky scale for performance, so it is very difficult to accept these reports seeing how active he continues to stay!!!! This is a good thing, and this is what gives us hope!!!

Love & Prayers

Kelly & Tom


Tuesday, September 7, 2004 9:39 AM CDT

Hello this Tuesday Morning!!!!

Thank you for stopping by and for keeping those Awesome Prayers flowing for Carl's complete healing!!!!

We are all well, Carl is feeling good, and we believe his platelete count is starting to hold it's own!!! He did get a fourth platelete trasnfusion on Monday morning. After the infusion his count was 108. We are hoping this will hold him now!! We are getting ready to head back to Rochester for tomorrow, we will be leaving later today. Carl will be having a body CT in the early morning, followed by bloodwork, and a doctors visit. I don't think he will be ready to start another round of chemo yet, but we will see? If not we will probably be able to come back home for a few more days?

Our weekend was very special!! Tom, with Chuck, Denny & John's help constructed a Beautiful cabin/fort in the grove for the kids!!! The boys helped out some, and enjoyed hammering and watching the progress as the walls went up and finally complete with a overhang roof and Beautiful flight of steps to climb up to their hide-out!!! What a Cool place for the kids to hang out!!! Carl is all ready to do some camping out with Auntie Janet next weekend if it works out!!! :0) Thanks to all of you that were here to help out, it has made these little people very Happy!!! I am sure these kids view you guys as their Hero's the way you slapped up that fort so skillfully!!! Auntie Jill you would be very Impressed!!!!!

Carl this morning asked when we were going back to Rochester? He is Happy to be going back, and visiting his friends at the Donald House!!!

Have a Beautiful day in the Lord

Only those who have the patience to do simple things perfectly will aquire the skill to do difficult things easily.
-Schiller

Do you see a man skilful in his work? He will stand before kings; he will not stand before obscure men.
Proverbs 22:29

Every good endowment and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change.
James 1:17

Until Later ~ Love & Prayers

Kelly


Thursday, September 2, 2004 9:25 AM CDT

Friday update ~

New photos on the photo page added!!!!

Carl's platelets are 9 today, another transfusion to happen.

He is feeling well and enjoing Dad being home today!!!

Dr. C. Anderson is checking with Chicago, to see if/when Carl could be enrolled in the IL-12/IL-2 study there.

Will update later, Thanks for your Prayers and Support as Always!!!!!!!

Please remember all of our friends in your Prayers too ~ Our Dear friend John Frank is in the Redwood Hosp. recovering from hip surgery, Please send some extra Prayers upstairs for John's Speedy Recovery!!!!!!!

Love & Prayers

Kelly

***************************************************************





Good Morning and Thank you for stopping by!!!

Since Carl was up late getting his blood transfusions (1:00am) he is still sweetly sleeping. Tomorrow we will complete the home IV antibiotics. Friday I will bring Carl back in to the Hospital to check his counts before the weekend.

This morning went much better than yesterday for getting the kids off to school!!! It is just so hard to get them used to going to bed early now!!! Both kids had a Great first day of school, and It was so fun to hear about Sydney's day and the male teachers she thinks are cute :0) Sam seems content with his class, and told me he would soon be taking a field trip to the Redwood Hospital. I told him "Man you should know all about that"!!!

Besides all the blood concerns and worries, and getting kids off to school, I have been doing some more research on other options for Carl and other possible clinical trials available. I finally took my dear friend Sara's advice and emailed to Dr. Clarke Anderson, a doctor who is very knowledgable and experienced with NB in LA. I originally was inquiring about a trial called BSO-LPAM, that is a very high dose kick butt chemo followed by a stem cell rescue? Dr. C Anderson, emailed back, and did confirm my suspicions that Carl would not qualify, due to the fact that he has had both his kidneys radiated. He did also, spend some time to give a list of other suggestions, and offer any help we needed!!!

First off, I am just blown away by the care, and kindess of this Doctor!!! I could not believe he took the time to write such a nice email and never even meeting Carl or speaking to us before!!! Dr. C. Anderson works with the NANT (New Apporaces to Neuroblastoma Therapy) The NANT is mostly Phase I clinical studies. We have heard of several of his options, and I was mostly impressed with his kindess!!! This is the email I received back from Dr. C. Anderson ~

>>>Kelly,

Thank you for the extra details. Before I go into details, the bottom line
is that the odds are pretty stacked against curing Carl and therefore no
matter what is decided you must weigh that into the decision. The other
thing that I think is important to consider is that if Carl is older that 7
years old, he should be directly asked wha he wants.

If Carl were treated at CHLA, here are the range of things that I might try.
(no particular order)

1) PZA---a new agent that works really well in the test for resistant
disease. The toxicities are bone marrow suppression (so need stem cells)
and mild nerve toxicities. So far, the kids on it have done well.

)Interleukin-12!!!!!!! Might be a very strong choice (more I think about
it, I might even rank #1) If eligible (and I just briefly scanned the
eligibilit), might be reallly attractive. It exploits the bodies' natural
immune system t destroy (in theory) even chemo-resistant NB. The major
(and this is big) is that it is intravenous, inpatient and the side effects
include major (potentially) flu-like symptoms. I am currently treating a
patient with this medication this week and she is in the play room and
feeling pretty good.

2) ??? MIBG, the double infusion. I am not completely sure if possible
and I would be happy to discuss with Dr. Matthay about the 60arrow thing,
but . . . I jsut read the protocol and it states, "Patient with massive bone
marrow invasion (greater than estimated 50replacement of bone marrow by
tumor cells), will still be eligible, but the first dose of I-131-MIBG will
be decreased to ensure that the whole body irradiation delivered does not
exceed the planned dose(Section 5.33)" Dr. Maris is very smart to be
concerned because the problem with massive involvement is that the radiation
dose to the bone marrow space is obviously much higher so much higher risk
for bad things (non-engraftment, other bad things). Again, I think Carl
might still be eligible, but . . .?? if worth the risks. I will of course
be happy to call Dr. Matthay for you. The other question I have that may
preclude the MIBG is how much radiation Carl prviously had to his liver--per
the protocol, I don't see where it would prevent treatment.

3) Consider Topo/Cyto again. Antecdotally, I have seen this temorarily
work if it has been awhile since received or if never had.

4) Low dose chemotherapy (cytoxan or vp-16 or temodar) plus retinoic acid
plus celebrex (plus even thalidomide and rocaltrol). This is potentially
a good choice because the side effects are minimal (e.g. can go o school and
feel good) and in resstant cancer might still work since these medicine are
intended to attack the normal blood vessles that are growing into the tumor.

5) No anti-cancer therapy. As scary as this sounds, it is actually an
important consideration. Carl sadly has had a lot of therapy and the
stupid, evil disease is laughing. If he is feeling good right now (as your
email states), then maybe exploiting this time might be important. Not
many parent choose this route for obvious reasons, but in adult
oncology----believe it or not, it is a common personal choice (e.g. feeling
good for a major trip, visiting firends)

6) others-------it is late and I could write out at least 3 or 4 other major
choices.

Please mull this over and let me know what you want to do. Take care. No
matter what you decide, it will be the best thing to do and I will be happy
to help. <<<

I will be talking to Dr. C. Anderson a little later today, He is in SPT, which is two hours earlier than here! If Carl is eligible, Tom and I are considering the IL-12 study, and would most likely be doing this in Chicago, our NANT center of choice, due to the fact that we have our Robyn & Kevin in the Chicago area, and Anna Bananna!!! And Angie & Michelle that we know from the Rochester RMH!!! We would know some family and friends in Chicago!!!

This study would involve about three or four weeks? There would be testing before, during and after the course of the treatment. Carl could potentially get up to four? cycles of this treatement if it works, and after the first course, it would be much easier, and possibly more out patient!!

This is all alot to think about, and a HUGE decision to make. Most of our options are probably temporary, but maybe we will get some more time with Carl until a cure is found!!! I just Pray that this last cycle of chemo did kick good NB butt, and knock down a majority of the cells.

I will keep you all posted on what we decide to do, and what else I find out after I talk to Dr.C.Anderson.

Keep the Prayers coming everyone!!!!!!

Love,

Kelly



Wednesday, September 1, 2004 12:29 AM CDT

Thanks for stopping by today!!!!

This morning's first day of school, left a lot to be desired ~ with tired kids that were up too late, and pulling Sam out of bed three times before he would get dressed, then missing the bus?? I still don't know how this happened, I guess I will have to syncronize my clock with the bus clock??? Luckily a friend was driving by with his daughter that also missed the bus, and brought the kids in to Morton to catch the bus there!! Thanks Ryan for your help!!!

Carl's counts are still dangerously low, his platelete count was 5 this morning, it was 11 on Sunday evening, and he was transfused Monday? We are waiting for the arangements from Redwood, to get platelets sent down from Willmar. We will be spending the late afternoon, early evening at the Redwood Hospital doing both Red cells and platelets today. I am checking about Tom giving platelets here to use for Carl, if he should need them in a couple days again? Also I wonder about red cells if they can be given and then directed for a person?

Other than the low counts still, Carl continues to be busy and active!!! He is lonesome without Sam today, and is a little bored. I told him we would be spending some time at the Hospital later today, and he didn't seem to care. Carl's mouth is also bleeding again, it is from one of his front teeth this time. Dr. Anderson at Mayo has prescribed a syrup type solution to have Carl swish with that will help any clots that are breaking off and continuing to bleed. As long as Carl stays fever free, and is not sick, we can stay home with him and just monitor his counts, and transfuse as needed.

Have a Great Day everyone!!! And Thank you for keeping Carl in your steady Prayers!!!!

The Art of Abundance ~ Discovering Life's Treasures

Abundance is . . . changing cloud patterns
in a bright blue sky.

Abundance is . . . a card in the mail from a friend.

God Always gives us strength enough, and sense enough,
for everything he wants us to do.
-John Ruskin

Abundance is . . . Renting a three-hanky
romance video and having a good cry.

Cancy Paull

Love & Peace

Kelly


Monday, August 30, 2004 2:55 PM CDT

Hello this Monday afternoon!!!

Carl is starting to show signs of stress from last weeks chemo. We noticed some blood spots in bed after he got up yesterday morning? We could not really figure out where it was coming from? Later in the day, we were down at Grandma & Grandpa Robinson's and noticed blood around the corners of Carl's mouth? We checked inside his mouth, but could not really see anything that looked like it was sore or bleeding? We kept wiping the corners of his lower lips, as the blood was continuing to appear? Later after we got home, we were stripping him down for his bath, and noticed how very bruised his legs were :0( Then the lightbulb went off, and we realized that his platelets were probably very low. After a phone call to the home health service we brought Carl in to the Redwood Hospital to get checked. His blood was drawn, and not to our surprise, his platelets were 11, the number they usually transfuse at is 20, so he was very dangerously low. This morning we went back in to get Carl transfused with platelets, and hopefully this will hold him now. He will have counts checked again on Wednesday. His ANC is still below 1000, so we will continue to give the GCSF shots for now. His poor little legs have a bruise at each shot site :0( And he has a collection of bandaid marks.

Other than the low platelets, Carl continues to go full speed without hesitation!!! I brought Sam with me to get Carl's transfusion this morning, and forgot (since it has been so long) that it takes about three hours to get this done. So the boys were little dickens, running around and driving their Mom crazy the whole time. Sam has started this belching thing, he does this at will, and the more you try to stop him, the more he continues to demonstrate his new discusting skill :0( I told Sam that he better stop doing this before he goes to school!!! His teacher will not put up with this, and he will be getting himself in Big trouble!!!! Then we went to Revier tire to get my tire put back on my car that we dropped off earlier this morning. The boys were climbing in the stacks of tires they had sitting around in the waiting room. They both looked like Michelin babies with their heads sticking out!!! All I could picture was Carl tipping over, and cracking his head on the cement floor with his platelete situation (hopefully with the transfusion, it is better)!!! So to say the least, Carl is the busiest, craziest little (sickest???) I'd say NOT, little bugger this side of the river!!!!!

I had better get going, we will be heading up to Reede Gray soon, to meet Sam's new 1st Grade teacher Miss Jones :0) Hopefully for his sake, (and my embarassment) he is all burped out by then!!!!

I found a favorite misplaced book!! ~ Abundance

Discovering Life's Treasures

Clean clothes. A hot bath. A smile from a stranger. Lunch hour browsing in the shops. A quick sandwich on the run. Crusty bread. Crisp salad. Salty olives. The car starting on the first try. A red carnation sitting jauntily on the desk. Daffodils and paperwhites displaded in the florist's window. Kids laughing as they get off the bus in the afternoon.

Love & Prayers

Kelly


Sunday, August 29, 2004 7:16 AM CDT

Good Morning to all!!!

Thank you for checking in today, and for your continued Prayer Support!!!

New Photo above ~ We managed to take in the State Fair yesterday, and the kids enjoyed sitting/climbing on all the toys at Machinery Hill!!! I was a fun day, we got up at 4:00am to get on the road by 5:00am. Tom and Sydney wanted to watch the Beef Showmanship at 8:00am. The boys were not up to sitting quietly at the show, so I walked around with them for awhile, so Tom & Syd could watch the judging in peace :0) I took the boys up the giant slide, and we walked through the grandstand. We had to get out of there though, as there were too many things the boys wanted to have!! We all had a nice day, and were very tired by the time we left for home.

Carl is still feeling well, he even walked much of the day yesterday!!! We will be checking his blood counts on Tuesday to see where he is at? And if his ANC is above 1000, we can discontinue the GCSF shots. We will check his blood again a few days later, and the home antibiotic infusions will continue until the 3rd of September. Our next visit to Mayo will be the 8th, unless Carl should start to run a fever with low counts before that. We took a urine collection before we started chemo last Monday evening, and I will be sending another one in this week to compare HVA/VMA levels. Overall he looks and seems to be feeling very good, but it is so hard to imagine what is going on inside his little body?

Sydney and Sam will be starting school on Wednesday next week. We will be going to their open houses on Monday and Tuesday evening!! The beginning of school has always been such a bitter-sweet time for me, I guess I can always remember my own emotions as I would go back to school each fall, as a child growing up :0) I always tell our kids, that this is the best time of your life, before you have the responsibilities, and all the worries of grown up life!!! I just want them to Love school, and enjoy learning!!!! One of the biggest milestones that I hold in my heart is for Carl to one day get on that big bus and go to school with his brother and sister. A Blessing it would truly be!! It Angers me to think of how many parents out there don't even care, and take for granted that gift of their child being able to step up on that bus, and enjoy seeing their kindergartener return home from that big first day of school, and skip off that bus with a big smile on their face, bursting with pride. The nagging pain inside my heart is the reality that he may never be allowed to experience that first day of school. . . with his Proud momma taking pictures and following him on the bus with my camcorder (Sydney is still embarassed, and scarred for life):0) If other parents only knew, maybe they would look at their child a little longer, hug their child a little tighter, and appreciate just a little bit more.

Thank you and God Bless all of you this Beautiful Day in the Lord+

Every good and perfect gift is from above, coming down from the father of the heavenly lights, who does not change like shifting shadows. He chose to give us birth through the word of truth, that we might be a kind of firstfruits of all he created.

James 1:17-18

Love & Peace

Kelly & Tom
& Family


Thursday, August 26, 2004 8:41 AM CDT

Babies (Twin update) Allert!!!!!!!!!!

Our Sweet Matt & Mandi Robinson had an ultrasound yesterday!!! We are :0) (The Robinson family) expecting a little boy and a little girl!!!! We are Soooo very Happy and Excited!!!! It will be fun to have both a baby boy and baby girl addition to the family!!!!! Congratulations Matt & Mandi, we can't wait for the Big Day!!!! I think the EDA (expected date of arrival) is December or January??? Just around the corner, so we are Thrilled and Very Happy for the both of you and both of the babies, and for all of us that are ready and waiting to share your new bundles!!!! God Bless those precious babies+

Carl is such a trooper!!!! He is feeling Great, and busy back to fun activities around the farm with brother Sam!!! Last night we had Sue Nelson, a sweet Redwood home health nurse come out to show us how to administer Carl's Antibiotics (Vancomycin) the last five days here at home. We hook his line up to a little vaccume packed ball, that releases the med into Carl's line over about an hour. Carl thinks this is pretty fun, he enjoys hauling his little ball around, and treats it like it is a little puppy or something :0) We also started the GCSF shots last night, to boost Carl's white counts. That went off without a hitch too!!!

It looks like a rainy day today, so I am sure the boys will find many things to do inside :0)

Thank you all for checking in, and for all of your Awesome Prayers that continue to lift Carl up and give our family the strength to march on in this battle.

Thank you God for all of the Awesome Relationships you have formed in our lives throughout this journey, we need these Loving people to help us through with your Love.

GOD'S TRUTH FOR YOUR RELATIONSHIPS ~

* You were never intended to go through hard times alone.

* In the middle of your pain and difficulties, God is calling you to ministry - to be his hands and feet and ears and voice in a hurting world.

* Every Moment of your life, in sickness and in health, you have the choice to withdraw into self or reach out to others.

* Your ultimate source for love and support is the Lord. But you can trust him to provide the human support you need.

* Yourt need can be a gift for someone who needs to reach out. Ask for it!

* Your deepest regrets will be those you could have helped. Even when you're hurting, reaching out to others will carry you toward peace.

* Your greatest gift of love toward another person is to share Christ with them.

Emilie Barnes.

Love & Peace

Kelly & Tom
& Family


Tuesday, August 24, 2004 10:10 PM CDT

Hello this Tuesday evening!!!

Carl is in the process of getting day two of his chemo. He tolerated day one like a pro, never a clue of sickness or fatigue until this evening when his motor was slowing down, then finally quit. We were allowed out on pass this afternoon, so the boys ran themselves ragged at the Donald House, while Sydney and I went back to school shopping. We got back to the Hospital about 6:00, and by 8:00 Carl was laying on the couch, watching Shrek, then before long fell asleep, and has been sleeping like a baby ever since.

After Carl's morning dose of antibiotic, we can check out of the hospital, and get ready to go home!!! We will go back to the Donald House to clean our room, and check out of our room there, that we have occupied for nearly a month this time. We will head back home, and start Carl's home care of antibiotics (til next Monday) and for the first time in almost a year in a half, we will start giving Carl GCSF shots to boost his white counts. This will be strange, and something new again for Carl to get used to.

It is funny but many things that Carl never questioned, or thought twice about, he is starting to wonder about. Such as our talking about his hair falling out again, and he was so fascinated with his blood transfusion yesterday :0) Anutie Janet and I tried to explain why he was getting a blood transfusion, and where it came from. Then we told him about the time in New York when he got Auntie Jills blood that she donated for him :0) Both Sam and Carl sat there with their ears wide open listening and the wheels turing as they tried to process that whole concept. At the time, Sam was sitting on the little tykes tractor that Carl has claimed all week, and was riding in and out of our room every ten minutes or so. Well Sam left the room, and when he returned, the first thing out of his mouth was "Carl and Jill have the same blood"? Janet and I broke out laughing, what a hoot!!!

As long as Carl does not spike a fever or get sick, we will be able to be home until about September 8th, when we will come back to Mayo for a follow up with Dr. Anderson. We will repeat the VMA/HVA urine test, and do a liver ct for staging after this first round of chemo. We will hopefully start a second round, or be eligible to enter the Phase I study with these two chemos Carl is getting plus the G3139 Antisense drug. We feel very relieved that Carl got started on this chemo, and we are Praying very hard that this begins to Kick NB Butt!!!!

Thanks for stopping by everyone!!!! Thanks for all of your Loving support and Prayers Always!!!!!! We desperately need them right now, and we can feel them coming strong!!!!

Love to you all

Kelly & Carl

P.S. Megan I am sorry we will miss that cheese cake :0( Thanks for the offer sweetie!!!!

P.S.S Michelle we do have those hankies all ready in case we need them!!! They did work, and we really relied on them back then. I can remember Carl feeling the effects sometimes a few days after his chemo was done. Thanks for sticking with us all of these two years!!


Monday, August 23, 2004 10:51 AM CDT

Good Morning to everyone!!

We hope you all had a Great weekend, we had a very Good one ourselves here!! Bryan was with Carl and I until yesterday, and we were able to get Carl out of the hospital on pass to go to a Twins game!!! It was alot of fun, we went with Stacey and a group of kids from the Donald House and camp!!! The kids got to run the bases after the game, and we stopped TC down on the field to get a group photo!! It was a fun day and THANK YOU Stacey and to everyone that made this possible!!! Did I mention this was a sky box at the dome? Very Awesome!!!!

Carl is doing well, he is still full of energy and craziness :0) We will not be starting the new Phase I trial today, since Carl's platelets do not meet the requirement. They are 88 and need to be at 100 thousand I guess? Plan 2 is to begin chemo anyway, without the G3139 agent of the trial. The two chemos are Doxorubicin and Cyclophosphamide, both chemo drugs that Carl has had in the very beginning of his treatment. He responded to these drugs very well, so we expect he will have good response to them again!! Carl's blood counts will drop low, and he will have the other side effects already experienced, such as nausea, vomiting, hair loss ect. Carl may develope a fever when his counts drop, and again require a hospital admission for line cultures, and antibiotics. We will finish this first cycle of chemo, then decide what to do from there? The NB may be reduced from this first cycle, and more stablized, so counts recover enough to start the trial, a couple weeks later?? We will just see what happens, and I know that GOD is leading us down the right path for Carl.

We are waiting for the lab to come up and draw blood for a cross match, required to order up a transfusion. Carl will receive red cells this evening before starting the chemo after. We will be allowed out on pass, until about 5:00 when we will come back to get started on his transfusion. We are also waiting for Auntie Janet with Sydney and Sam to arrive!!! They will be coming for a couple of days to keep us company and offer some moral support!!! I am very glad Sam will be here to play with his buddy, Carl is starting to get bored, and the week has only started :0( Dr. Anderson thought we may be able to be discharged either Wednesday or Thursday? So hopefully we can get back home for the weekend, before Carl's counts bottom out.

Thanks everyone for checking in on Carl, we can feel the Power of your Prayers and know that we are not alone in this continued battle. Please remember all of the NB warriors, and other children battling illness of their own

Bryan has set up a caringbridge for himself to jornal and keep in touch with family and friends!!! Stop by and leave him a little note if you get a chance :0)

BRYAN'S PAGE

God Bless you all

Kelly & Carl


Friday, August 20, 2004 9:02 AM CDT

Bryan now has his own web page, to keep in touch with friends and family!!! Go to ~ www.caringbridge.org/mn/bryan

Now he can keep in touch with all of his new camp friends!!!!

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Good Morning & Happy Friday!!!!

Carl is up having breakfast, watching Dora (wearing a huge milk mustasche) :0) He is feeling well, actually so well!!! We had some visitors last night, Deb & Andrew from the Donald House!! Deb asked at the desk what room Carl was in, and she said they told her room 110, but you will probably find him riding around in the halls!! It was fun to see our friends, we do miss them, and Carl sure does Love tagging behind Andrew most of the time:0) Carl did his usuall tractor riding through the halls here yesterday, and he even got in trouble as he came riding by one of the nurses full boar, and slapped her on the behind on his way by. She Loves Carl dearly though so I don't think she minded too much!!!

This morning I checked out the Redwood Gazette website, and found an adorable picture of Sam, with his calf Spot!!! To view go to linke ~

REDWOOD GAZETTE

The kids got finished up at the fair yesterday, and brought all their fair stuff and animals back home. They will be busy putting everything away today. They had a Great time this year, and made many memories for themselves and for all of us too!!! I was so Happy that Carl was able to spend a couple of days there with Spike his calf!!! Thanks again to everyone that helped us out and helped the kids with their animals!! We appreciate all of your efforts, and patience with Sydney as I know she needs reminders to stay focoused on her responsibilities of a 4H'er!!! She is young (pre-teen) and at that age, but I am sure she too appreciates all that has been done for her to help her with her projects again this year!!! Tom and I were talking this morning, and this is the second year, that we both have not been there very much for the fair. We have not been there to coach, discipline, and supervise the way we as parents should and wanted to be. We know the kids were always in Excellent hands, and we THANK YOU all for helping us through another year of a busy fair week. We know you will be richly rewarded!!!

We will soon be leaving to head over to Camp Jornada to get Bryan from his adventurous week of Fun!!! I talked to him last night again, and he was so Happy and Excited about his week!!! We will join the campers for lunch, then attend the Camp's closing ceremonies, complete with a slide show of all the pictures that had been taken all week!!!! WE CAN'T WAIT!!!!!! Bryan will be staying with us here at the Hospital until Sunday. I am so glad we will get to spend some time with him too!!! I am looking forward to some quality Mom/Son Son's :0) time!!! I have alreday picked out some Great movies to watch, and we will just hang out together and relax!!! I'm sure Carl will be fine riding the halls, (Just kidding, we will try to corrall him for some fun movie watching too) :0) We will also be able to leave the Hospital on Pass for a few hours each day.

I am still waiting for the Doctor to come by rounds, we are still keeping our fingers crossed that Carl can start his new protocol by Monday!!!

Thank you for stopping by, and for keeping us in your constant Prayers!!!

Maybe Bryan will update later on his Wonderful week at camp!!!

Love

Kelly & Carl


Wednesday, August 18, 2004 9:14 AM CDT

Thursday August 19th update ~

St. Mary's Hospital ~ room 3-110
phone no ~ 507-287-4623

The strep bacteria of Carl's port culture is an eppi strain of strep that is Roseffen resistant. He was admitted this afternoon to begin Vancamycin IV Therapy. Cultures were drawn again this morning. The resident was just in and said that the Vanco will be an hour IV infusion four times a day. We may be allowed out on pass between infusions. Carl was due to start the new chemo protocol (Clinical trial) on Monday, so hopefully he will be able to stay on track with that plan, and we will find out more tomorrow after we see Dr. Arndt.

We had not realized it, but August 18th yesterday was the two year anniversary of Carl's diagnosis. Sitting here in a room directly across the hall from our first room back then, it brings back so many of those emotions. It in many ways does feel like the beginning, like we are starting from scratch, and never even got anywhere in two years.

Please keep Carl in your Powerful Prayers, as our journey marches on . . .

Love & Peace

Kelly

***********************************************************







Wendesday evening update!!!

What a day at the fair!!!! All of the kids did a FANTASTIC job of showing their animals, we are so very proud of them!!! Sam earned a participation ribbon for his baby calf project, and both Kate & Sydney earned blue ribbons on their breeding heifers!!! Sydney won Junior Showmanship for her heifer!! For Chickens Sarah and Sydney both did very well, their chickens each had some minor flaws, so they did not do as well as they hoped. But they did a Wonderful job of showing all their animals and presenting their projects to the Judges!!!

I have to Thank Jenny & Jessie & Dustin for all of your help this week!!! These guys took off a whole week of work to be here to help the girls with their animals at the fair!!! It is with their dedication and enthusiasium that has enspired the girls to work hard and keep trying!!!! Thank You So Much we could not have done all of this without all of your help!!!!!

We received a phone call from Dr. Gross at the Redwood Hosp today, Carl does have a gram positive infection. We made another trip to the ER tonight for a third dose of antibiotic. We will be seen in the morning at Mayo, and learn what the treatment plan will be to treat this infection. These set-backs really make us angry!!!!! They are unnecessary, and preventable with proper sterile handling of Carl's port and line. We caught on of the Doctors last week (An Anesthesis) trying to go into Carl's line for sedation without wearing gloves, or cleaning the tip on his line. Not only once but twice!!! So it is not hard to figure out why these line infections are happening!!!!! Now depending on what needs to be done, this could compromise Carl's chemo schedule, and push everything back. At this point we don't feel like we can afford these thoughtless mistakes, when it is our childs life hanging in the balance!!

I talked to Stacey today for a brief moment, before my cell phone cut off on me, She said that Bryan is having the time of his life at camp, and he wants to come back every year!!! She said he even wants to be a camp counselor!!!! I am so Happy Brayn is enjoying his week!!!!!!

Thank you for checking in on Carl and for all your Prayers Always!!!!

We Love You all!!!!!!

Kelly & Tom & Co.

*****************************************************************




Good Morning to all!!!

We are enjoying the fair, but more sitting back watching the boys with their calves :0) They are so proud of their little projects, and have been busy to keep them cared for!! They noticed how everyone would stop at thier little calves and ooooo and ahhhhh over how cute they are, so they began to ask every child that stopped if they wanted to go in and pet their cow :0) Soon Carl began to venture further out of the barn to snag wood be walkers by, to come in and pet his cow :0) It was very precious, we sat and smiled, and laughed so much at these boys!!!

We have been keeping a close watch on Carl the past couple of days. He started to run a temp on Monday, and has visited the Redwood Hospital for line cultures, and antibiotics twice to cover a possible line infection. We have not heard an official report after 24 hours, so I guess then this should mean no news is good news?? He wanted to be here so badly at the fair, so we are so Happy that Carl got his chance, and that Sam was able to have his little partner with him!!!

Bryan is at camp Jornada this week, and I have not heard anything from him so far. I know he is having a blast, because they have a week of fun activities planned for all of the campers!!! I think later today was the biggest event of all week ~ The Jello War!!!!! I can't wait to hear all about his adventure at camp, and see the pictures of all the kids!!! They should be having nice weather this week, it did rain earlier on, but it has been just Beautiful ever since!!!

Sydney has already left with Tom to get to the fair. Today they must wash and get ready her chickens and her heifer for the shows!! Sam will be showing Spot, but he really needed to sleep in a little this morning since they were working so hard yesterday, and were so tuckered out last night :0) Sydney's Grandma and Grandpa Bladon, Doyle and Helen are here to watch Syd show her animals, and Jeff arrived last night too. I was in the restroom yesterday, and turned around after washing my hands and Helen was standing there!!! I said "HELEN" and she said "KELLY" and we hugged!!!! She didn't expect to see me at the fair, she knew Carl had some tests to do in Rochester this week, but didn't know we got it all done on Monday, and could come home for a couple of days!!! It was so good to see them again!!! They are all excited to see Sydney show her animals today, and Sydney is so Lucky to have so many family members there supporting her!!!! We also have Auntie Jill and Nickey coming this morning, Aunties Janet, Joy and Sheila will all be there today too!!!! Thanks to all of you for taking time off of work, and making this a special fair week for the kids!!!!! Sydney will be bringing her friend Heather to the fair with her tomorrow, she is looking foward to a day of fun, after her showing is all done!!!

Thank you for stopping by, and for all of your Prayers that are making a difference in our lives!!!

GOD'S GIFT OF TRUTH WHEN YOU NEED SOME COMFORT AND JOY

* It's impossible to be always happy, but it really is possible to be continually joyful.

* Little joys can carry you through when you can't get your mind or body around big ones.

* You can be joyful even when you don't feel joyful. You can accept comfort even when you don't feel comfortable.

* When you don't feel comfort, look for strength. When you don't feel strong, give the Lord your weakness.

* Joy comes from understanding what has been promised, trusting in God's care, practicing thanksgiving-and appreciating life.

* God will give you the comfort and joy you need, in the proper dosages, to bring you where you need to be.

* Joy is that deep-down knowledge that all is well, regardless, and all shall be well, no matter what.

Emilie Barnes-

Love & Prayers

Kelly & Tom
& Family


Saturday, August 14, 2004 7:47 AM CDT

Good Morning this Beautiful Saturday!!!

If you have not been to Carl's site for a few days, let me bring you up to speed on what is happening. Last week we started tests/scans. His results include bone marrow progression to about 60 percent, and liver involvement.

We met back with Dr. Anderson yesterday to review results and figure out a new plan. Carl's MIBG scan clearly showed the bone marrow progression, and confirmed the bone marrow biopsies to be about 60 pecent. Carl's little body was lighting up like a christmas tree. The liver spots that were discovered on the CT scan, were noted on the MIBG scan but too small to measure. So what we are dealing with is heavy bone marrow involvement, with mets to the liver (however small) We are Happy that no tumor, or lesions were found. We feel ok with the results, we of course would have liked to see less bone marrow disease, and now we live in the fear of what will transpire next with new growths. Carl had about 80 percent bone marrow involvement at diagnosis, and cleard afer a couple of rounds of chemo, so we are hoping and Praying that a chemo protocol will kick butt on the marrow disease again and give him a good response!! The MIBG treatment at CHOP is not an option with this much marrow involvement. We have contacted Dr. Maris about Carl's situation, and asked to be put on his list (two or three months) to consider then if his condidion should change.

We were presented with the Fenretininde study, (oral pills, works like accutane but better) but we dismissed this option because we don't feel Carl can swallow 16 pills a day. This drug will be coming out in powder form in the fall, so we can use this as an option later! We discussed several palliative chemos with Dr. Anderson, then discussed a couple of possible clinical trials. One was the Rebeccamicin trial, a new chemo drug trial. The other was ADVL0211, a trial using two chemos that Carl has already had in the past (that worked) and introducing another agent that works to block the way cancer cells become resistant to chemotherapy. We are thinking about the second trial, since it includes two chemos that we feel Carl can respond to again.

We will be heading back to Rochester tomorrow to bring Bryan to Camp Jornada. Carl will have appointments to get a heart ecco, a bone scan, & blood work. We are hoping to get them all done on Monday, so we can get back home for the beginning of the fair. Carl will not be able to start this new protocol until Monday the 23rd, as he has to be off of prior chemo for two weeks before starting. Sydney and Sam will be bringing their calfs, Sydney's is a breeding heifer. She will also be showing her chickens. The times for shows are poultry 10:00am and beef 12:00 noon, both on Wednesday August 18th. We are planning on bringing Carl's little calf Spike, just so he can experience having his little guy at the fair too :0) He is so Excited for the fair!!!

Thank you all for checking in so faithfully, and for keeping those Prayers Storming!!!! We are feeling a strong sense of Peace, so we know that the Lord is ever present in our lives and has a very speical plan working for Carl!!! We can feel it so strongly!!!!

Please continue to keep all of our friends with children fighting cancer and other illness in your Prayers, and all of our NB family, all of the warriors, and Precious Angels that we have lost. Thank you and God Bless.

~ The Power Power Of Prayer ~
No Ocean can hold it back,
No river can overtake it,
No whirlwind can go faster,
No army can defeat it,
No law can stop it,
No distance can slow it,
No disease can cripple it,
No force on earth is more powerful or
effective,
Than the power of prayer.
(author unknown)

Love & Prayers

Kelly & Tom
& Family


Wednesday, August 11, 2004 3:43 PM CDT

Thursday afternoon update ~

We are back at the Donald House for a moment, we need to go back to St. Mary's for Carl's MIBG Injection soon, then over to the Mayo bld. for an eye exam.

More troubling news today, I met with Dr. Anderson for a few minutes to sign a consent to have Carl's Bone Marrow sent to another lab for further testing. The bone marrow aspirates are back ~ one shows 10 percent and the other 60 percent ??? I am not sure I understand that this can be?? Just one month ago, the Marrow showed less than 1 can't believe that a little boy as active, running, busy, can have this much disease in his marrow?? Just one week ago, Carl made about 10 trips up the super slide (32 steps) hauling a heavey carpet to slide down on. He did this all alone with no help. I don't know what to say, but I guess we will certainly find out more tomorrow with the MIBG scan results.

I best go round Carl up and head over to the Hosp. for his injection. I will update tomorrow after our Doc.consult.

Thank you all from the bottom of our hearts for all of your Prayers that are surly helping us through!!!

God Bless

Kelly & Tom
& Family

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Good Afternoon this Wednesday!!!

The little boys are in the tub right now, getting cleaned up from beer!!!! Yes BEER, they got into Dads cooler that was sitting outside, and had a blast breaking cans and spraying each other. They came in the house smelling like a brewery :0) Carl said "Im not too bad Mom - see" showing me his drenched back.

Yesterday when we got home from Rochester, Mayo called to update me on new appointments that were scheduled for Thursday, and Friday. Carl will be having an eye exam tomorrow (not sure why, could be due to a clinical study that requires the exam?) then an MIBG injection for a MIBG Scan to be done Friday Morning. Also urine and bloodwork tomorrow. We are glad they are now doing the MIBG scan, since it may be very important for what may be coming up. I emailed to Dr. K. today and asked to have Carl's MIBG scan and CT'S from April sent fed-ex to Mayo for them to compare to. We have received many emails from our NB family about Carl's situation, and as we figured, this is not a good situation for Carl. We are so Thankful for all of the Support and Well Wishes, Prayers and Positive Energy being sent our way!!!! It means the world to us to know that so many people are pulling for Carl!!!!

We will meet with Dr. Anderson on Friday after all of the tests are complete. I am not sure if we will keep the Monday PET scan or not? We already have some thoughts and ideas about a plan of attack!! We are sure Carl will need to get on a chemo soon to hopefully halt any more NB growth in the liver, and beyond. Carl did have mets to his liver at diagnosis, and it did clear from the chemo, so maybe this will work again, and buy us some more time!! We then will probably get on the list at CHOP for the MIBG treatment, or explore the other Phase I studies at CHOP that are showing some promising results in some of the children, we just don't know how well they would work for liver mets?

PRAY PRAY PRAY I am asking all of you to Pray harder than you ever have for Carl. Lets join forces and like Sara Hammer said "Storm Heaven with Prayers for Carl" Lets Pray for Carl's Miracle!!! This time it is not just for clear scans, the stakes are so much higher. Please Pray that Carl will be allowed to live longer, Pray that he will be given more time here on earth with all of us. I am not afraid of Carl going to heaven, I know he will be in Jesus loving arms and the company of all the other precious Angels we have lost. I don't think he is afraid of going to Heaven, he talks about Jesus and that Jesus Loves him. Today he told me that "Jesus Loves me... He is always with us, and he will take care of us" The faith of a little child is so Amazing!!!! We just want to have Carl with us for as long as possible!!! Pray that we make the right decisions that are best options for Carl, and that the Doctors lead us with God's help!!!

Carl and I will be heading back to Rochester tonight, so that we will be there early in the morning to begin appointments. Tom will join us tomorrow night, and be there for Fridays tests and to meet with Dr. Anderson.

Thank you all for all of your Help, Support, Love and Prayers Always!!!! We couldn't do it without all of you!!!

O LORD, I call to you; come quickly to me. Hear my
voice when I call to you. May my Prayer be set before you like incense; may the lifting up of my hands be like the evening sacrifice....My eyes are fixed on you, O Sovereign LORD; in you I take refuge-do not give me over to death.
-Psalm 141:1-2,8

Love & Peace

Kelly & Tom
& Family


Tuesday, August 10, 2004 9:14 AM CDT

Thank you for keeping the Prayers coming strong!!!

We are getting ready to head back home, Carl is done with his bone marrow procedure, and eating his second order of toast with butter :0)

While I was waiting for Carl in surgery, Doctor Anderson came in the room and wanted to give me the results of yesterdays CT's (abdominals) It did reveal some spots on Carl's liver. We will know more after the bone marrows are back, as to what else we are dealing with, and also the PET on Monday. We will be meeting back with Dr. Anderson on Friday to discuss Carl's results, and to come up with a plan. We will be considering a phase I study, such as the ABT 751- or CEP 701 oral chemos, but I would like to see Carl get a couple of cycles of IV chemo to target the liver to get him stableized before going into a Phase I study. We will find out more on Friday, and feel more comfortable once we establish a plan of attack!

Carl is getting restless in his stroller here, so I will sign off for now and get us on the road. Thank you for all of your constant Love and Support!!!

Love & Prayers

Kelly & Carl


Monday, August 9, 2004 5:58 PM CDT

Good Evening to everyone!! Thank you for checking in on Carl today, and for remembering him in Prayer.

I was going to hold off on an update until I know more information, but I then decided that we may need to start pumping the Prayers strong, and it couldn't hurt to begin sooner than later. I have had a very sick feeling in my gut, and I can't shake it. I have been on the verge of tears all day, and more than once wiped my cheeks as my thoughts have been much more about gloom today, than sunshine. And I fear the rest of the week will also bring more unpleasant test results.

Carl had CT scans this morning of his body, and everything went fine with that procedure. Carl is really turning into the most cooperative little patient. He let the girl access his port without a peep. He layed on the table with his arm up to let her get at his port area, and he watched Jo Jo's circus while she got him hooked up :0) As we were waiting for his contrast to sit in his tummy for about a half an hour, I decided to make a few phone calls to see if we could get his PET scan done this week instead of next Mon. the 16th. Well no luck there, the girl in Nuclear Med, said there was NO openings this week at all!!! So I thought then I would try to call one of our scheduling gals in the Peds Hem/Onc area to see if we could then get an MIBG scan set up this week since it was scrapped last week when we were trying to get it scheduled. So I talked to Norma on E9 and then directly to Dr. Anderson who explained that Nuclear Med, were the ones that felt it not necessary to do both the MIBG and PET. And the most important/best scan right now would be the PET as it would show anything of any concern and was the most sensitive scan. Also he was aware that we cannot get it done unitl the 16th, so we just have to go with that and nothing really can get changed.

Then Dr. Anderson looked to see if Carl's VMA/HVA was back from the urine collection I turned in last Thursday. Yes it was back and the results are as follows:

VMA - 22.1
HVA - 28.2

His last test about three wks ago were:

VMA - 15.8
HVA - 17

Normal for both of these values are less than 13

Three or so weeks ago, when Carl's results were elevated we questioned if it could possibly be some fluke, due to something he ate, or that he was on the antibiotics during the collection etc. Now we are almost certain that this is not a fluke, but tumor growing somewhere?? Dr. Anderson does think that we will find something.

Carl will be having his Bone Marrow Aspirates/Biopsies tomorrow. We will go back home and then return on Friday to complete the CT's (Head CTs) then we will meet with Dr. Anderson in the afternoon to go over the results that we will have back so far. We will bring Carl back to Rochester on Monday for the PET Scan, and I suspect if anything is showing up on the PET we will probably do an MIBG scan since Dr. K. and Dr. Maris at CHOP prefer to use these scans for NB. We will probably be heading to CHOP next and Carl will most likely have every test repeated again???

It is so hard to speculate before we know for sure, and very hard to imagine what will come next if he does have some new growth going on. It is just so hard to wait . . .

Mostly what this all means, is that the chemo he has been taking, is not working, or has become resistant to his disease. Not a complete surprise, it has been very nice for a very long time that Carl has responded so well to this drug. He was so much of an exception to the relapse rule for response and quality of life. It was almost too good to be true, we were living in a fantasy world for almost a year, and getting too comfortable with Carl being so well, I guess our luck has run out!!! And we are now awakened to the reality of the true picture. . . a slap in the face if you will, and it feels so terrible. I would prefer to go on living in the fantasy/denial world that we have become so accoustomed to, it felt comfortable, and safe.

We ask for lots of Prayers from all of our Prayer warriors right now. We are facing the unknown, but we know we can make it though with all of your help. We know that God is in control, he has Carl's life in his hands, it is His will, in His time. We Pray that Carl will continue to fight this hard, and our dream of a second remission be obtainable for Carl.

I will update as soon as we have more information.

Please also remember all of the other NB warriors in your Powerful Prayers, and all of our Angel's and their loving parents that miss them so much.

Thank You and God Bless+

Kelly


Thursday, August 5, 2004 8:08 AM CDT

Saturday Morning update ~

Carl and I arrived back home yesterday early evening. We feel Happy to be back home, and Carl is quickly catching up with Sam and activity he has missed all week!! We attended the Renville County Relay for Life last night in Olivia. Grandma Phyllis and Carl carried the tourch for Morton, and I once again found myself in tears as I watched our two survivors with Pride!!!

Sadly little Simon has passed away to join Alex this week in heaven. Please keep both families in your Prayers, as the struggle to find meaning, and peace with their devestating losses. Mary, Simon's mom posted a link this morning to a story tn the Utah paper ~

SIMON'S STORY

We left Mayo yesterday, trying to get Carl's scans/tests set up for next week. I received a call when I got home from the sedation nurse, and it seems that they could not schedule everything on our list, which was ~
Bone scan, MIBG, Pet scan, all which required sedation, because Carl would never hold still for 20 to 40 minutes without moving a muscle. So they consulted with the our Doctor, and have decided to only do the PET scan and cancel the rest. And the PET scan was scheduled for the 16th??? Not next week while we are doing Carl's bone marrows, and CT scans (without sedation) So we will be trying to get his PET moved up to next week, to make our lives a bit easier. The way it is set up it will require a trip to Rochester on Monday, then home on Tuesday, then back on Friday to see the Doctor for results. I do enjoy the drive to Rochester, but 150 miles one way, can become inconveinient, when appts. are scheduled so spaced appart. Then we still have the issure of the MIBG scan, that we really would like Carl to have. Dr. K. in NYC is still following Carl, and he prefers this scan to study NB. So anyway, we will either be trying to schedule this at a later date, or visiting Dr. K. again in the near future to get this all done for Carl's benefit!!! I wouldn't be as concerned this time, if his urine markers were not elevated this last time, but with that result, it could mean NB growing again? We did repeat the vma/hva urine test, and should get the results back next week too. So I guess this is just all in the day of the life of a chid fighting cancer!!!! And a day in the life of a mom trying to manage a busy schedule. All of Carl's scheduling issues, also revolve around the County fair the week of the 15th, where Sydney is spending a week with her animals. And Bryan going to Camp Jornada in Stewartville. I missed Sydney at the fair last year, so I wanted to make an extra effort to be home with her this year, as it is so very important to her at this time of the year!!! All will work out and fall into place, it always does!!!

Today we are going to spend a quiet day at home. Carl wants his little friend Payton Loken to come over to play, so we will see if that is ok with her parents!!! It is so fun to see him having fun with a little friend!!!

Please keep the Prayers coming for Carl, as he will be doing his scans/tests bone marrows next week, and for all the NB warriors and Angels.

God Bless

Kelly & Tom
& Family

**************************************************************



Good Morning to all!!!

I am adding a link directly to Carl's News Clip from the WCCO story on Tuesday evening. Go to~

CARL'S NEWS CLIP

It aired again yesterday at noon :0) I left Carl in our room for a few minutes while I left to go and get him a glass of milk, and when I walked back in the door, I caught the tail end of it. Carl watched it then for the first time, as he was sleeping at 10:00pm that first night :0) Now he thinks it is just natural that he is on TV all the time!!!

Today Carl has chemo at 9:00am then we head over to the clinic for blood work, and then to see Dr. Anderson to set up Carl's scan/test appointments for next week. After that we will spend the afternoon at the Olmstead county fair!!! Carl has a wristband for rides, and is very excited to start using it!!! We met Stacey and Megan, her Mom Sarah and a few other friends at the fair yesterday, and went to the Rodeo last night!!! It was a Great time, but it bothered Carl to watch the calf roping event :0( He thought they were hurting the little calfs, and he was thinking about Spike his own little calf at home.

Thank you all for checking in, and for all of your notes and comments about Carl's News appearance!!! I too Loved it, and I am so Happy they captured Carl in his true essence!!! A very busy active healthy looking little boy!!!! He was such a crack up, it was just perfect!!!!

Thanks for keeping the Prayers Flowing, we are very Blessed to have such a strong Prayer force pulling for Carl!!! And we will need all the Prayers we can get next week during Carl's scans/tests!!!

Have a Beautiful day in the Lord

Love to all

Kelly & Carl


Tuesday, August 3, 2004 12:45 AM CDT

Good Morning to all!!

I just found a video link on WCCO to view last nights clip :0)

Go to www.wcco.com, and look for WCCO Video Minn boy fights cancer by selling Lemonade: Bridgette Bornstein

I think they did a wonderful Job of capturing Carl in his natural form, he started out a little shy, but after he got going and was turned loose outside with his buddy Andrew, he was Crazy Carl!!!!

Have A Great Day and we will catch up again with you later!!!

Love and Peace

Kelly & Carl

********************************************************************


Just a quick update: Carl and I were interviewed this evening by Bridget Bornstein. It should run on the 10:00pm WCCO channel 4 news tonight. If it does not get on tonight, it will be on tomorrow night!!!

Good Night, and God Bless

Kelly

***************************************************************


Good Afternoon everyone, and Thank you for looking in on Carl today!!

Carl's week has been going very well, and he is busy and full of Energy like any normal child would be!!! Actually I think he is busier than any normal child, he is a little fire cracker, and anyone here at the Donald House could attest to that!!!

last week was a FANTASTIC first week of chemo, and we enjoyed our time here in Rochester very much!!! On Thursday, we went with Megan, (a very sweet Camp Jornada Counselor) to Kellogg Mn to the Lark Toy store!! It was an Idea of Megan, and a good one too, we had a great time ;0) Megan works at Baker's Square here in Rochester, a few weeks ago we went for pie and ice cream with Stacey, Carl wanted to get a Shrek guy out of a game in the lobby ;0) But couldn't. Megan asked her manager if he could get it out for Carl, but he could not. So her manger went to Toy's R Us and purchased a Shrek for Carl, and a Donkey and a Shrek Sticker book!!! Can you believe that!!!! Well Megan wanted to give these treasures to Carl, and she thought the Lark Toy store would be a fun place to go!!! Inside the toy store, is a beautiful hand carved wooden Carousel. We all took a ride on the carousel, and looked at all the interesting toys all around the store. Carl also took a little train ride ouside before we left!!! It was SO much fun, THANK YOU Megan for being such a sweetheart, and Thanks to your manager for his part in Carl's surprise!!!! We will be stopping in for Pie sometime to Thank you both again!!!!! :0)

Bryan came out then on Thursday night and we left for home after Carl's chemo on Friday morning. Sam's 6th Birthday was Saturday!!!!! HAPPY BIRTHDAY SAMMY!!!!! We packed up the car Saturday morning and drove up to Spicer/New London for a fun filled day of fishing, putt putt golf and go-carting :0) Sam and Carl even cought a few little sunnies with Grandpa Robinson's Cane pole!!! We had a very special day, it was so good to get away, and forget about the world for awhile!!!! On Sunday we drove down to Isanti to attend Uncle Rick's folks- Dennis and Shriley McVenes' 50th wedding anniversary!!! It was a very nice party and we were very glad we were able to be there too!!! From there Bryan, Carl and I headed back to Rochester to start Carl's second week of chemo on Monday. Bryan needed to be back home for a special date tonight (Tuesday) it is his and Emily's third month anniversary :0) So Bryan headed back home last night!!!! Oh to be so young and in Love!!!!

We are keeping busy here at the Donald House, Carl is enjoying his friend Andrew, and being the little tag-a-long that he is known for ;0) It is so Great that Andrew doesn't mind too much!!!!

Since Alex's passing, we received a phone call from the WCCO News station. They would like to come out later today and do an interview, and Story about Alex, and a follow up on how Carl is and our participation with the Lemonade Stand!!! I am not positive this is happening, but I will find out a little later when one of the reporters calls back to confirm them coming out. If the story is done, it will probably be on the evening news, and I will let you know that later for sure. It would be channel 4 news here in the twin cities.

Thank you all for keeping Carl lifted up in Prayer, it has helped us get through these difficult times, and gave us comfort and hope to carry on!

God Bless you all

Love

Kelly & Carl


Monday, August 2, 2004 7:55 AM CDT

The Philadelphia Paper has an article about Alex Scott ~ ALEX SCOTT

Good Morning to all!!!

After a fun filled busy weekend Carl, Bryan and I are back in Rochester for Carl's second week of chemo.

I just opened my emails after being away from the computer for a few days, and I am sitting here in tears.

I have learned that Alex Scott passed away yesterday about 4:00pm. She passed very peacefully in her sleep, without pain, with her family holding her hands. A very sweet precious child that has touched the world, is now an Angel. I knew that Alex has not been doing very well, I think we all thought she would just keep on going the way she has for all of these years. Alex has done a wonderful thing for Neuroblastoma with her Amazing Lemonade Stands across the country!!! The last update I read was about 700,000.00 total so far, with many more stands and fundraisers to happen all throughout the summer. The Scott's are sure they will surpass one million dollars. We are very honnored to have been a part of Alex's Amazing Lemonade Stand day this past June 12th 2004!!! Alex has forever touched the lives of so many people, and so deeply, even people she has never met!!! Alex will be Honnored and remembered forever, and the world of Neuroblastoma will forever be changed because of Alex!!!! God Bless the Scott family at this most devestating time, Please keep them in your Powerful Prayers as they could use peace and comfort right now.

This past couple weeks has been very difficult with our NB families. Another child that is loosing his battle with cancer is Simon. His mother Mary has been so wonderful with her updates and journals. She is Amazing and has been so helpful to all the other families in our group so often! Even when she has been in the midst of her troubles, she will always reach out to other folks that have questions or concerns. Please keep Simon in your Prayers, pray for painfree special moments for his family while they wait for Simon to gain his wings. To read about Simon go to ~ SIMON'S PLACE

I will update more about last week, and our wonderful weekend later. Right now all I can muster is these a few requests for Prayers. Carl is well and Happy, so we are feeling very Blessed right now, Please continue to keep Carl in your Prayers as he continues this second week of chemo, and for his upcoming scans/tests the week of July 9th.

Thank You and God Bless

Love & Prayers

Kelly & family


Tuesday, July 27, 2004 5:07 PM CDT

Hello this Wednesday!!!

I have a photo link to view pictures we took in Chicago, and of the Rochester Cruise.

Go to ~ NEW PICTURES

Hopefully this will work, I added them to shutterfly, you should be able to view them as a slide show!!!

We are doing well here today!!! Getting ready to go meet Stacey for lunch!!!

Have a Great Day everyone!!!

Warm Wishes

Kelly & Carl
***************************************************************





Good evening to everyone!!!

Thanks for checking in, as I said yesterday I would re-cap my journal, that I lost.

We are back in the routine of chemo, and playing!!! Our schedule will be 9:00am every morning, and we should be done around 10:30 each day, allowing for much playing!!! Tomorrow we are going to meet Stacey for lunch, and catch up with her on what has all been going on!!!

Today we went shopping, we visited the Rochester Harley store, and Carl enjoyed riding a quarter opperated Harley in the lobby area :0) He rode normaly, then backwards, then he stood up, then he rode on the back as if he were a passanger :0) He was quite entertaining I must say!!!

We then made a trip to Menards to look for a new (much needed) kitchen faucet for home!! Well as soon as we got in the store, Carl started singing the famous song ~

"Save big money at the nards"

:0) Who said advertising doesn't work??? Well to my embarassment, he sang loud and non stop :0) We found a fawcet, and got the heck out of there, but left Carl's little Harley cap in the cart in the process :0( I called "The Nards" when we got back to the Donald House and they found Carl's cap, so we will go back and get it tomorrow!!! :0)

If you have read any of the guestbook entries, you will have noticed that we met and enjoyed our time soo much with many families this weekend at the Chicago Neuroblastoma conference!!! It was very Awesome, and we are so Happy we went this year!!! The kids had a blast, and made some new friends too :0) We got to see the Hammer's, the Thomas team, the Oconnor's (Anna Bananna ~ Carl's best girl) and many other faces we recognized from NYC!!! We met folks that we have talked via internet with about our children for the past year and a half! We were amoungst some of the nations most admiral Doctors/Researchers that study NB and are as dedicated to finding a cure as all of us parents!!! Truly a Joy to be there, and we will never forget it!!! It was hard to say goodbye to some of our friends, and others we missed a hugg as we were leaving Sunday morning. We felt so much Love and compassion for and from everyone in attendance, and we all were united for the same reason, which is what made this a special event for all!!! If you missed the pictures, go to my previous journal from yesterday and click on the link there with NB Conference Pictures on it!!!

When we got back to the Ronald McDonald House Sunday afternoon, we were there just in time for the 3rd Annual "Cruise" bike ride to raise dollars for the Rochester RMH!!! The Cruise include almost 900 bikers, and our sweet Kala and her Dad rode in the ride too!! It was very Amazing to witness this many bikes parading together to reach the RMH where they parked for ice cream and pop :0) The Event raised over $60,000.00!!! I have some Great Photos and hope to get them added soon!!!

Carl's appointments have gone well so far. We do have a small concern, but hopefully it is nothing to worry about. The level of his hva/vma was slightly elevated from a urine collection I sent in last week. This value measures tumor activity, and could be an indicator that NB is growing somewhere in Carl's body. It also could mean nothing, as these values have been know to be in-accurate before and can be affected by simply eating a particular food or being under stress or many other factors. Also Ganglio tumor(mature/treated NB)can cause an elevation??? These were the values that we got back ~ VMA 15.8 & HVA 17.0 I have heard that each lab will have a different range of what is considered normal? MSKCC has a differnent measure than Mayo etc? So we will continue with this current cycle of chemo that we are on, and then re-test/re-scan.

Thank you all for stopping by, and for all of your heartwarming notes and Prayers Always!!!

Please keep the Prayers coming strong for Carl this week and in the next couple of weeks to come. Pray for nothing new growing in his body, Pray for clear scans, as he so very much deserves to continue with this Blessed good health that he has been enjoying!!!!

God Bless you all

Love & Prayers

Kelly & Carl


Monday, July 26, 2004 7:26 PM CDT

Good Evening everyone!!!!!!

I just spent about an hour doing a Great update, and lost the whole ball of wax!!!!!!!!!!!!!! UGHHHHH!!!!!!!

I will try to recap my journal tomorrow sometime, but here is a link to see some pictures of some of the kids this weekend at the conference!!!! Which was Awesome!!!!!!

CONFERENCE PICTURES

Another Minn Mom that we met, Mary Halloway, took these pics, and shared them with our group today. We had a fantastic time meeting new families, and sharing time with old friends we already knew!!!! What a Joy!!!!!

We started chemo today, and all is well, Carl is feeling good, and busy as ever!!!!!

I will try to update tomorrow with more details about the conference and share the Wonderful "Cruise" Motorcycle fundraiser that took place here at the Rochester RMH last night!!!! Very Amazing Event!!!!!

Love & Huggs to all!!!!

Kelly & Carl


Tuesday, July 20, 2004 10:14 AM CDT

Good Morning to everyone!!!

Relay For Life Pics added!!!!

I am Happy to report that Carl is officially home from the Hospital, and done with his antibiotics!!! Praying that they did the trick, and his line infection has cleared, to avoid pulling his port, and another hospitalization.

Thank You auntie Joy for staying with Carl on Sunday night, it sounds like you all had a Great time with your Shrek Party!!! Thanks Uncle Clair for bringing Bryan Home on Sunday, it helped us out very much!!!

Some more Thanks You's ~ To Krista for stopping by on Friday to visit Carl, and for bringing the boys the Hulk guys :0) I did spend some time reading those magaizines you brought!!!! So Much Appreciated!!!!

Thank you to all of the Redwood Falls Hospital Staff, for all of your Loving care, and for putting up with a very busy little guy all week!!!

Thank you to everyone for all of your help the past couple of weeks, we truly appreciate all of your assistance with everything that you do to make our lives more bearable!!!

We especially Thank you for all of your steady Prayers that keep us strong during these crazy times. May God Bless you all, We Love you Dearly!!!!!

We are getting ready to head to Chicago on Thursday for the Third annual Neuroblastoma Conference!!! We are Excited to be attending this year, and so Happy we will get to meet up with some of the Great Families we have met and communicated with over the internet for awhile now!!! We are also hoping to come home more educated and informed about treatment options for relapse NB.

Here is a link for the Childrens Neuroblastmoa Conference 2004 ~
NB CONFERENCE 2004

Carl will be due back in Rochester on July 26th for his second round of the new chemo protocol (week 1) so on our way through Rochester, coming back from Chicago, we will stop off at the Donald House and hopefully get a room for the week. It will be a busy couple of weeks as usual!!!

Please keep all of the NB warriors in your Prayers, and Pray for safe travels for all the families making thier way to Chicago this week!!!

GOD'S Gift of Truth for your own Journey ~

* No matter where you travel, God lives there,
too. There is nowhere you can go to get away
from his love and care.

* You can trust the Lord to guide you through
every earthquake zone.

* To build your faith, remember to look back
at where you've been!

Emilie Barnes

Love & Peace

Kelly & Tom
& Family


Saturday, July 17, 2004 2:18 PM CDT

Hello this Saturday, Thank you for stopping by!!!

So much to update, it has been a busy week for all!!

I am so sorry to have read that Michaela has passed on. Even though I knew this would be happening, it still cuts like a knife to know that another of our precious children has been taken much too early, from this terrible disease. I feel anger, and rage that something is not being done quicker to stop this deadly form of childhood cancer!! I know it is being worked on non-stop, but still a cure must be found soon, this has taken too many innocent lives, for too long!! Our children deserve the same chance of survival as other forms of cancer, it just needs to happen now!!!!! Please keep the Mease family in your Powerful Prayers during this very difficult time, I can't even fatham what they have endured, and are feeling with the loss of their Beautiful daughter.

Carl is still inpatient doing his antibiotics, he should be discharged on Monday some time. We were able to bring him to the Relay for Life last night, and he enjoyed nearly all of the evening with us!!! He needed to leave at 7:00pm for two infusions, but was able to return by 9:30pm for the Ceremonies, and to get some time playing with his brother in their little camo tent, and running around the track of Beautifuly decorated luminaries!!! Carl was honnoray chair this year, so Carl made an appearance at the Cermonies with us. I was the one to speak for him, but choked and could not get much out. I had many thoughts and feelings I would have Loved to convey, but at such an emotional time, it was not easy. I wanted to tell everyone about Carl's past, and how well he is doing right now, but I could barely speak. I guess I am better at writing than speaking, and maybe should have wrote this all down and read it off of a paper? If I would have been able to speak about what I have on my mind and in my heart, I would have been there all night. There are just too many emotions involved in fighting cancer in your little baby, and I just hope everyone understands that!!!

We also enjoyed our friend Stacey from Camp Jornada being with us last night!!! Stacey drove all the way up from Rochester with her sweet daughter Jessanna, and set up a very cool Tee-Pee for us all to check out!!! Stacey also spoke at the Ceremonies about Camp Jornada!!! "Camp Jornada" The most Wonderful Camp in the world for kids with cancer, their siblings, or children of parents fighting cancer!!! I am adding a link to the "Jornada Rocks" site for you all to keep tabs on what is happening with our favorite camp!!! Stacey trys to organize other activities throughout the year for the camp kids to get together and have fun!!! Such as our night at the Rochester Honkers game a couple of weeks ago!!! It is good for the kids to renew their friendships formed at the summer camp, and to get to see one another in between summer's as it gets to be an awafully long year of waiting to go back to camp each summer!!!! These kids have the best time together, and Love Stacey dearly!!! She is a Angel appointed by God to Love these kids as she does!!! Thanks Stacey for all of your help and Love Always!!!!

As I mentioned the Luminaries were so Beautiful last night!! Carl had so many bags around the track, some with adorable pictures of him on them, and others with his favorite charictures "Shrek" "Nemo" and little notes to Carcar, and how much he is Loved!!! Yes he is Loved so very much by so many people, he has touched so many lives in this short (or long) two years since he has began this battle with Neuroblastoma. It is always amazing to me to have someone come up to me and ask me if I am "Kelly ~ Carl's Mom"? I am so very Proud to be his Mom, and so very touched to have so many people recognize us, and want to tell us that they have been following his site for a long time!! It touches me that Carl has touched so many people and made a difference in so many lives, even so many folks we have never met!!! If this is the reason for Carl's trials, then I feel that we have a purpose, as we were chosen by God to deliver this message!!! The message of Love, and Hope to all!!

GOD'S TRUTH FOR EVERY DAY
OF THE REST OF YOUR LIFE

~ God is good. God is good. God is good.

~ God heals - but he does it his own way. And
he wants to heal the whole person, not just a disease.

~ Death happens - but Christ is the Lord of death.
So death is really just a change of address.

~ Anything that ever happens to us can be a
building block for God's kingdom.

~ Every moment of our lives is an extravagant
gift from the God who Loves you! Don't forget
to say Thank You.

from ~ A different kind of Miracle
Emilie Barnes.

Love and Prayers

Kelly & Tom
& Family


Wednesday, July 14, 2004 6:04 AM CDT

Good Morning and Thank you for looking in on Carl!!!

He is doing well, just busy and very active at the Redwood Hospital :0) We can take him out on pass a couple of times a day! Once after his noon infusion for a short hour and a half, then again after his 3:30 antibiotic until 7:00pm! Auntie Sheila stayed overnight with Carl last night, to give me a break to be at home. Thanks so much Auntie Sheila, it was good to sleep in my own bed again!!! Carl was so Happy to have Auntie last night, Tom talked to him on the phone once, and he said Carl was very excited!!!

We will keep doing the same through the weekend until Monday I believe. We are getting prepared for the Relay on Friday Night!!! It should be a very enjoyable night, as it always is with friends and family around, but it will be a bummer with Carl's inpatient situation :0( But we will mannage and get through this, as we do every little setback we are dealt!

Please keep the Prayers coming for Carl this week, and say some extra Prayers for sweet Michaela (link above) and her Loving family. I am so heartbroken for Kim and Dave and for what they are facing with their precious child. No parent should ever have to experience the pain of losing thier baby at 8 years old. God Bless Michaela and her family and bring them peace, comfort and special moments to cherish forever!

Thank you all for your endless Love and Support, we appreciate knowing that you are always with us in thoughts and Prayers no matter where we may be in our journey!!


God Bless+

Kelly & Tom
& Family


Sunday, July 11, 2004 11:29 AM CDT

Good Morning to all!!

This afternoon we will move Carl to the Redwood Falls Hosp to complete his antibiotic IV treatments, which will continue until a week from Monday. Due to the complexity of administering the two drugs, it was too difficult to set up home infusion therapy. It will be easier and more efficient to do this in the Hospital. We will be able to get Carl out on Pass between his infusions. Right now Carl is receiving Gentamicin every 8 hours, at 3am, 11am, and 7pm. Then he gets Ampicillin every 6 hours, at 2am, 8am, 2pm and 8pm. So we will be able to leave between some of the infusions.

Yes this is going on until Monday after the Relay this coming Friday night. We will try to get Carl out on Pass to go to the Cancer Walk for a few hours!! It will not be as convienient as we would have liked, but then when is anything ever convienient when you are fighting cancer in your child!! We are still planning on CARL'S COMMANDOS keeping our annual position at the Redwood County Relay For Life this year, and we are feeling very Blessed that Carl will be with us, walking proudly as a TWO year survivor!!!!! GO CARL!!!!!!!!!

Thanks to Stacey our friend here in Rochester, she has made our week enjoyable and helped Sydney pass some of her time!!! Sydney went with Stacey on a road trip to bring Brooke back to Iowa yesterday!!! It sounds like they had a Great time and many laughs ;0) When the girls got back they were giggling and trying to keep a little secret:0) Well it turned out Stacey picked up a "fart machine" and the girls were fooling around with it all day yesterday. Stacey had the box in her purse, and Syd had the remote :0) Well soon enough the boys cought wind of the fart joke, and joined in on the fun!!!! Carl had the box hid in his pants, and walked out in the hall (pushing his IV pole) and Syd and Sam did the remote ;) all the while trying to keep from cracking up!!! Stacey told Carl that he needed some "Beano" :0) Thanks Stace for all the great fun and laughs this week!!!! It has been a Blast!!!!

Be sure to check the guestbook ~ Stacey added a zeocast of pics from the Honkers game!!!!

Thank you for checking in on us, we appreciate all of your constant Love and Support Always!!! Thank you for keeping us in your Prayers daily!!

I will try to update during the week as I get a chance, we will make trips home for breaks while we are out on pass, and I hope we will be able to see my folks during some of these breaks as well, it has been so crazy the past few weeks we have not been able to see them very often.

Take Care and Have a Beautiful Day in the Lord+

Love & Prayers

Kelly & Tom
& Family


Friday, July 9, 2004 7:57 AM CDT

Good Morning and Happy Friday to all!!!

Had our week turned out as we hoped, we would be up cleaning our room at the Donald House, and getting ready to head over to the PITC for Carl's last dose of chemo, then hitting the road for home by 10:30 or so. We would probably end up stopping at McDonalds either on the way out of town, or in Owatonna to get Carl's fix on McNuggets :0)

But since our plans changed so quickly on Wednesday, I am typing here on a cot, Sydney is snoreing on the couch, and Carl is still snoozing in his bed behind me at St. Mary's Hospital!! Carl will finish his last dose of chemo this morning, and will continue on his antibiotics to fight off a Strep Infection now classified as Enterococcous. They do know which antibiotic to best treat this strain, and have been using it since last night. Carl was on four antibiotics for a short time, but now has been cut back to two, the best combination to work on this particular type of strep.

A little earlier I was up and in the bathroom. One of the residents came flying into Carl's room, and spotted Sydney sleeping on the couch (thinking she was me) . . . so she then came bustling into the bathroom to turn on that light, only to find me sitting on the pot!!! Well no big deal, a little embarassed, but I am getting used to it since yesterday the cleaning lady barged in on me also sitting on the pot!!! I guess I had better start locking the door, I must be feeling too much at home here. At home someone is usually blasting in the bathroom whenever anyone is in there with the door closed, and Pika even pushes the door open to come in and visit on occasion.

Today I hope to find out more about the treatment schedule for Carl's antibiotics and the outlook of our hospital admission. The resident explained that the culture drawn yesterday, was still growing the Entro strep, so they may need to keep culturing until it comes out negative before we are safely able to leave the hospital, either to continue IV antibiotics from the PITC here, or to try to transfer home to complete the 10 or so days?? We are pleased Carl's fevers are gone, and he is feeling very well, and is energetic as ever!! It is always so hard to see him down, but when he is Happy and enjoying himself, we can deal with daily IV antibiotic infusions, especially when we know what we are dealing with!!

Tom and Sam are coming later today, and Carl is very Excited about that!!! He has been telling all of the nurses "My brother is coming"!!! He even told Sam on the phone yesterday "I got some silly string, we can squirt the nurses" heeeheheheh (Thanks Stace!!! ;O) ) Stacey brought Carl some silly string and told him he will have to squirt Farah one of the nurses and camp counselors!!! So he has been looking for her ever since ( I think she is on today) :0) Then Carl told Sam that he has the tractors all ready for when he gets here!!! Oh no, I hope they are ready for the two brothers to hit the halls here again!!!

Tonight is the Rochester Relay For Life, so Sydney and I are going to Join Stacey and some of the Camp Jornada team at their Relay here!!! It should be fun, and we are looking forward to getting out of the Hospital for a little while!!! Dad will hold the fort down here with Sam and Carl A.K.A. Maniac tractor drivers!!! It is almost time again for the Redwood Relay For Life back home. Next Friday is the date, and we are hoping and praying that we will be able to be there for the walk!!! We are certain that Carl will need to have at least 10 days of IV antibiotic treatments, so we will try to get this transfered to Redwood as an out patient basis, even for a few days, so that we can be home for our Relay on Friday!!!

If our lives are not hectic, and busy enough, the following week July 22nd through the 25th we are planning a trip to Chicago for the third annual Neuroblastoma Conference!!! This conference will include many physician guest speakers from around the country and everything will be about NB, from the history, current treatments, up and coming therapies, and about grief and support! We will get the chance to meet many other families that we have communicated with over the past year and a half on our NB support group list serv. And reunite with families we have met in NYC at MSKCC. The kids can come with, as there are activities planned for all the children while the parents are in the lectures. We did not go last year because we were doing so much traveling back and fourth to NY and we just wanted to stay home. This year we wanted to make every effort to go, as it will be especially important to attend since we are now dealing with Carl's relapse and seeking as much information as we can find about treatments and options!!!

Thank you for all of your Prayers and Support, it means the world to us knowing that we are backed by so many concerned, Loving friends and family!!! Carl is very Blessed to have so many fans on his side!!!!

Please continue to keep all of our NB families, and other friends battling other cancers, or illness in your Powerful Prayers!!!

God Bless you all+

Love & Peace

Kelly & Tom
& Family

P.S. Jerri, it is so good to have you back reading and signing the guestbook again!!! We missed your wonderful entries!!! Thanks to all of you that take the time to sign in to just say HI, or to offer well wishes and Prayer, It always brightens our days to read those notes!!!


Thursday, July 8, 2004 10:31 AM CDT

Hello this Thursday, and Thank you for looking in on Carl and for Keeping the Prayers flowing!

Carl does have a line infection, a strep bacteria has grown from the culture, and we are waiting to see if any further classification is grown, to determine which strain and the best way for antibiotic treatment. He woke up with a fever again, and we got on it with tylenol to keep his temp under control, and avoid any further seizures from the high temperatures. This should all improve too, with the antibiotics kicking in on the infection.

It will be at least 48 hours of culture growth before we know exactly what we are facing for treatment (antibiotic) and how long we will be admitted. Of course we were hoping to be able to go home this weekend, but we are not counting on it right now, we will just wait and see what transpires with this culture. Carl was able to get his next dose of chemo this morning, and he will finish this round tomorrow! I am very happy that he has handled his new chemo regemind so well, and has not experienced any side effects from the lower dose Irinotecan!!! So with that, we should be able to keep him on this plan for the time being, and he will need to repeat this two week round starting on the 26th of July. The plan is to re-scan after that round to see how things are looking at this point.

We did get to meet Sandy last night, she was able to walk over to the Hospital, as they were staying at a hotel right across the street from St. Mary's!!! We enjoyed our visit, and we think Sandy is the sweetest person, we are so glad we finally got to meet her, It was so fun to visit and get to know her better!!! Stacey came by last night too, and kidnapped Sydney for awhile:0) They went shopping, and to watch a friend Lynne play Volleyball!! Thanks Stace for all that you do for us, you are so Great Girl!!!!

Please continue to keep our friends in your Prayers also battling cancer and other illness. We are so Blessed to have all of their support, we need to remember them too, and offer our Love and Prayers to help them in thier journeys.

Thank You and God Bless+

Love & Prayers

Kelly & Family


Wednesday, July 7, 2004 4:38 PM CDT

Hello this wednesday afternoon!!

We are at St. Mary's Hospital Room 3-110

Carl has been admitted to St. Mary's today. We headed over to the clinic to have labs drawn, after chemo this morning, as Carl was feeling sick. He was having chills, then later spiked a temp. While we were waiting to be called for labs Carl went into a seizure. It was short, but never the less scarry as usual! Once again a febrile seizure, and had I realized he was feverish earlier, I could have dosed him with tylenol or mortrin and posibbly prevented it.

We are not sure yet what is going on, perhaps an infection? The fever is the cause of the seizure, but the fever could be from a virus, or infection of his line or some other infection in his body. After a nap in the ER (we were taken by ambulance to the Hosp) Carl woke up and was back to his little crazy Carl self again!!! The nurses were very surprised up on the floor when they saw his condition when we got up there ;0) He looked very good!!!

So for now we are expecting at least a two day hospital stay, maybe more depending on the culture results. I am over at the Donald House packing some belongings, and I will head back over soon. Syd is holding the fort down with Carl, they are actually in the playroom and hopefully Carl is mending his ways while I am gone!!!

We are expecting a very special visitor tonight, Sandy Tryon from Duluth!!! She is a cancer survivor, and a former Peds patient here at Mayo!! She has been following Carl's website for a long time now, and finally we will get a chance to meet her!!! We are hoping she will be able to find us at the Hospital, she was going to come by the Donald House tonight. I will let the desk girls know where we are at!!!

Please keep Carl in your Prayers that he gets over this little virus/infection with few complications, and we are able to get back home this weekend!!! Thank you all for checking in, and for your continued Love, Support and Prayers!!!!

Love
Kelly & Sydney
& Carl


Monday, July 5, 2004 4:13 PM CDT

Tuesday Update!!!

Thank you for stopping by, and for all of your Awesome Prayers helping Carl and our family in our daily journey!

Please keep Mandi & Matt, and her whole family in your Prayers. Mandi's Grandmother passed away yesterday. Please Pray for peace and comfort during this very sad time.

Please remember to keep the Prayers coming for all of our dear friends we have met along the way. Pray for sweet Michaela (link below) and all of the Neuroblastoma warriors. Also all of our friends here in Rochester at the Donald House, that we have come to know and Love so much!!!!

We have a gloomy day here in Rochester today, but we are going to go and find something fun to do!!! There is a place called "Bearcat Wallow" ?? a little south of town, that we are going to go check out!!! It has Bears, Cats and other animals. We thought about going up to the Mn. Zoo in Apple Valley, but thought this would be closer to get to today, and we will save that for another day, and maybe we can meet my friend Shellie there some time!!! hint hint Shell :0)

It is fun to have Sydney here with us, she has been a big help with keeping an eye on Carl :0) He is such a little social butterfly, feeling welcome visiting just about anyone here at the house:0) Last night we went to the Honkers game!!! It was so much fun!!! It did rain, but we enjoyed our night very much!!! Brooke got to run the bases before a dog got back from retrieving a stick!!! Then Carl and little Chloe got to go out on the field between a couple of innings to do a performance ;0) They had to dress up in the big guys clothes, with shoes and all, then run to home plate!!! Sydney was with Carl helping him, and Chloe got help from her Daddy:0) Stacey got many Great Photo's of our night!!!! She will probably get them posted on her site soon!!!! To check there go to ~ CAMP JORNADA ROCKS

Thanks Stacey for everything!!!!!!!

Ok I thought this would be short and sweet, so I will sign off for now!!! Have A Beautiful day everyone!!!

Thank you for your continued Love and Support!!! We Love you all!!!!

Kelly & Syd
& Car************************************************************



Hello this Monday!!!

We are back in Rochester for week two of chemo. It is so strange, it really feels like Sunday here. The good thing, is that we already have day one of chemo behind us, and only four more to go!!! So it feels like we have a head start or something??? Not really but it feels that way!!

Bryan and Sydney are with us, Bryan will be leaving us in a half hour, he still has some summer school to attend, so we will have to wait until that is all done for him to spend some time with us here on another trip. Sydney had only one day of softball, so we thought it would be ok for her to miss that one day. Sam has three this week, so he is on the other end, and I hate to have him miss three days:( So he will be home with Dad this week, and will get some quality Dad and Sam time to himself!!!

We enjoyed our Holiday weekend at home very much!!! It really flew by way to fast however. Carl enjoyed being back home, and having the freedom again to run around outside!! We managed to keep him nearly mosquito bite free, even with the "Est Tile" virus scare going on around our house :0) Carl made a new little friend this weekend, her name is Payton Loken, Larry and Joann's little girl:0) Payton and Carl were born the same year, only three months appart. It was so Adorable to watch them chumming around together, Carl was so happy to have a friend of his own!!! I even caught Payton helping tie Carl's shoes for him:0) I was so impressed!!! Tieing shoes at 4 yrs old!!!

Sam and Carl have become quite enterprising these days:0) It all stared with Sam finding a really neat rock in the crick at the park!! He thought it must have been some sort of fossel or something, as it appeared to have a spot on it where bugs could go into and hide:0) Believe it or not, he managed to sell that rock to Uncle Clair for $1.00 :0) Well a little while later, when Carl caught wind of Sams money making operation, he was busy looking for a rock to sell too!! He wanted me to help him find one, so we looked for a short time. I figured Uncle Clair wouldn't care what the rock looked like, if Carl came by trying to sell it, he would probably succeed with a rock of any sort:0) So we quickly found a rock, and off Carl ran to find Uncle Clair!!! It was so Adorable watching from a distance:0) I could see Carl doing his pitch, then pretty soon Uncle Clair bending down to listen closer, (Hook, Line, and Sinker) Uncle Clair was reaching in his pocket for a bill:0)
One of those very priceless moments. . . Well it cost Uncle Clair a buck I guess!!!! :0)

Tonight Sydney, Carl and I are going to the Honker's baseball game with Stacey and some of the kids from Camp Jornada!!! It should be a blast, we are excited to get to meet Brooke and some of the other camp kids!!! Stacey is such a sweetie pie, we are so lucky to have her in our lives, she Loves these kids so much!!!!

Well I better get going here, it is almost time for Bryan to leave. I will update more tomorrow!!!!

Have a Great Evening Everyone!!!!!

P.S. Thanks for the Birthday Wishes too!!! It has been a good Birthday, and I feel very Blessed!!!!

Love & Prayers

Kelly & Sydney
& Carl


Friday, July 2, 2004 11:38 PM CDT

Happy Fourth Of July To Everyone!!!!!

New Photos added to Zeocast from this past week!!!

The above Photo of Carl I took on Monday, he was standing in front of his artwork on the bulletin board along with all of his friends handprints!!! This beautiful display was added to the Ronald McDonald House for their recent Open House. It is with much Prayer and all of our hopes that Carl will be able to say "Cancer No More in 2004" This is our goal, what we are striving for with blood, sweat and tears!!! Monday also was the first day of Carl's new treatment protocol. It is a new beginning for Carl, and as I was taking this picture, I was thinking what a special day it really was, and what a special photo of Carl in front of his little hand prints. As you may recall, we did Carl's handprint almost two years ago when this all began, we called it Carl's "Heart On Hand" If you notice one of his hands almost looks like it has a heart on it! This time we did not put a little sticker heart on his hand for the print, the "heart" likeness came out on his natural handprint!!! On Monday, I couldn't help but wonder, if this day was the first day, of the rest of Carl's life, and with it would bring, a healthy happy child that truly would have Cancer No More in 2004!!!!! And Forever!!!!!

Have a Wonderful Holiday Weekend Everyone!!!!

God Bless you all!!!

Love & Prayers

Kelly & Tom
& Family


Thursday, July 1, 2004 7:46 PM CDT

Hello to all and Happy Friday (tomorrow) To everyone!!!

Carl is having a Fantastic week!!! We have one more day of week one left for chemo!!!!

So far no side effects to be concerned about!!! He is looking so good and feeling well too!!! He is also eating like a horse, which is so wonderful, I am so Happy he has such a nice appetite this week!!!

We have been finding things to do to pass the time, and Carl is having fun too!!! A couple of nights ago, we went over to the Best Western Apache for swimming :0) A couple of the boys here were going, and they were talking about it in front of Carl, well the next thing we knew we were on our way to the Hotel too :0) Angie here found out that the kids from Ronald can swim free any time over there!!! They had such a good time, and Carl slept so well that night!!!

Tonight I took Carl to see the new movie "Two Brothers" What a fool I was to think I could sit through that whole movie about two little tiger cubs that were so cute, seperated, father killed, mother almost killed, the little ones nearly tortured, then put back together by some mean men expecting them to fight to kill one another, only to recognize eachother as brothers and begin playing together again, then to be set free, then reunited with their mother!!!!! Without Crying. . . . NO WAY, ok sorry if I spoiled the plot for you all, but it was so terrible, I was just sobbing in that theatre!!!! Carl even looked at me once and said "This is so sad" which made me cry even more!!!! Well we are ok now, we went to the Olive Garden for supper, and I feel better after a couple glasses of wine:0)

Tomorrow after Carl's morning treatment we will be heading out of town to pick up Bryan after summer school, and then heading back home!!! Carl is very excited to be going home, and he can't wait to show Sam his new scooter :0) Sam has been staying at Auntie Janets this week, since she was off work, and she would be able to get him to his T-ball game and practice. We talked to Sam last night, and it sounds like he has been really enjoying himself at Auntie Janets and Uncle Marks the past few days!!! He told Tom he didn't want to come home until Friday when Mom gets home:0) We also learned that he has been shopping with Janet, and he has conned her into a few toys in the process!!! Sydney and Katie (Happy Birthday Kate!!!) just got home from 4H camp today!! It sounds like they had fun, but she said something about their cabin getting robbed? Hopefully it wasn't too serious!! She was Happy to hear my voice on the phone tonight, and we are all so Excited to get back home together soon!!!

We would like to wish all of you a most wonderful Independance Day, and weekend!!!!! Enjoy your time together with your children, and remember to give them a squeeze, and tell them how much you Love them!!!

God Bless you all

Love & Prayers

Kelly & Carl


Tuesday, June 29, 2004 1:40 PM CDT

Good Afternoon to all!!!

Two beautiful days here in Rochester!!! Can't beat that, we so do Love these sunny warm days, and one thing I can really appreciate is hardly any mosquitos!!!! Carl wanted to go ousidse last night, and he aske me "Is it est tile out?" After repeating his question about 6 times, I realized what he was asking me LOL he was asking "Is it West Nile Out?" I have been so strict about letting the kids out after supper at home, because the mosquitos are so thick, I think I have them scared for life about West Nile Disease!!!! We do have WND in our area, and two years ago, (When Carl was first diagnosed) we lost "Meg" Toms horse to West Nile. With all of the rain we have had this spring, the mosquito population has got to be astronomical this summer :0( But back to my point, it is so nice to be outdoors in the warm breeze without being eaten alive!!!!!

Two days of chemo have gone very good!!! The Temolozide is a caplet filled with powder. We are able to open the caplets and mix the powder with water, and (Thank God Carl still owns a G-tube) syringe the mixture in his Mic-Key button, and he is not any worse for the wear!!! I don't know how we would have been able to get him to swallow "5" pills a day, but I suppose if we had to, we would have found a way to do so!!! He has complained a little today of tummy pains? I gave him an extra dose of Zofran, and it has helped so far. Also our appointment for chemo was at 9:00am today, so Carl did not get a chance to eat anything before hand. But the Temolozide is supposed to work best on an empty stomach? Hopefully this will get better and not worse as the week goes on!!! Other than a few small complaints, Carl's energy has not kept him down, and he is keeping his reputation "Crazy Carl" going strong!!!!

If anyone knows Carl, they also know what a little conversationalist he is :0) Or shall I say a little question-er he is :0) Carl's little buddy Andrew, told us that one day (while we were home) the crew here had a "Carl day" They immitated Carl all day with ~ "Why?" "Because" and "How Come?" :0) What an Honnor for Carl!!! :0) It just goes to show how much he is Loved here!!!!!

We have kept busy with a fun Volcano activity yesterday afternoon, then we went shopping!!! Carl has wanted one of those little scooter deals, so he can go outside with his buddies and ride, while they are riding their skate boards :0) He spotted a little girl with a pink Barbie scooter yesterday, and what do you think happened next? You guessed it "Mommmmmmm can I get a scooterrrrrr" Well when we got back from Toys R Us, Andrew and Mohamed met us outside, and Andrew had a big grin on his face :0) All he said was "I knew that was coming?" I guess Andrew has gotten to know Carl pretty well, or I'm a sucker one of the two!!!!!

Carl and I stopped at Bakers Square last night for supper, and met a very nice gal Faye, and her friend that happened to be sitting right behind us in a booth. Carl was crawling around, and flirting, as usual, and pretty soon we were talking to these girls!!! Faye told us that she also has Neuroblastoma, she is battling a relapse too. We still can't get over meeting someone else, and an adult that has NB here in Rochester. We enjoyed visiting with them and when we were getting ready to leave, Faye grabbed our bill and insisted on paying for our supper!!! What a very kind, sweet person, we were so Blessed to have been seated right next to these two wonderful Women!!! I was telling my friend Stacey about this happening, and she said "You know what, God puts people in the right place at the right time" And I too believe that as well!!!! If you are reading this Faye ~ Thank you and God Bless you, for touching our hearts!!!

Thank you all for checking in on Carl, and Thank you Always for keeping the Prayers going strong for him!!! I am very convinced that all the Prayer Power happening for Carl, has been working, as we are reminded of Gods presence in our daily lives!!!

God Bless you all+

Love & Prayers

Kelly & Carl


Saturday, June 26, 2004 12:08 AM CDT

Hello this Saturday!!!

Thank you for checking in on Carl today!!!

It is a Beautiful day here in Mn today, the boys are off with Dad doing chores, and Sydney is at a 4H poultry class with Sarah!!! Before we know it, the county fair will be upon us again. Tom and Syd brought out the two heifers yesterday, that she and Kate will be showing at the fair!! They are leading around so nicely!! Then Syd and Sarah got their chickens a couple days ago, it is so cute to watch Carl with the chickens, he is not afraid to pick them up and hold them :0) They are so gentle which really helps, but he looks so cute with a chicken tucked under his arm petting her back with a smile on his face :0)

Carl and I will leave tomorrow to head back to Rochester for two weeks of chemo. The new plan will be a lower dose of Irinotecan with Temozolomide. The Temozolomide is an oral pill? So this will be a first time trying to get Carl to swallow a pill. The Irinotecan will be the same as before, an IV infusion, but will be a lower dose over two weeks. We are hoping to get home for a day or so for the Fourth of July weekend, heading back to Rochester early on Sunday the fourth, to begin week two. We are not counting on getting home, as soon as I plan something, it will not work out, so I am just taking a day at a time, and Praying Carl will toloerate the new chemo dose well!!

Please continue to Pray for all of the Neuroblastoma Warriors, and Please say some extra Prayers for Michaela (Link above) she is now under the care of Hospice, and her wonderful family are trying to make the most of each day, to handle their daughters care with Grace and dignity. We are Praying for Michaela's Miracle, but if not that, then for her to experience peace and painless days until she gains her Angel wings. God Bless Michaela and family+


Have a Blessed Weekend!!!!

Love & Prayers

Kelly & Tom
& Family


Thursday, June 24, 2004 9:30 AM CDT

Good morning to all!!!

Thank you for stopping by Carl's page today, and for keeping him lifted up in your Powerful Prayers!! We truly are so blessed to see him feeling well again, after that week of dehydration in the Hospital. I reflect back to a little boy laying in bed with a bucket next to him, not a smile in days, to this little Happy boy outside with his brother (fawcet running on the house) filling water balloons and giggling :0) Thank you Lord for keeping Carl well, and showing us your Wonderous works!!

We have had a very busy week with Sydney, and Sams ballgames, and Sam's football camp!! We wouldn't trade being there watching them for anything!!! Sam is so cute in T-ball, he actually caught a ball and threw it to first for an out!!! He stood there grinning afterward, very pleased with himself!!! He is doing so good this year, he is so much braver and confident, which is so nice to see!! Sydney does well too, she was Happy her team won yesterday!!! She enjoys playing and a few of her good friends are on her team with her!!!

Bryan is busy for a few weeks in summer school. He would rather be home enjoying his days, but it won't last long and he will be done soon!!! Everyone thinks his girlfriend Emily is so cute, and she and Bryan make such a great couple!!! They really do, Emily is such a sweet girl, we Love her and enjoy having her around with us!!! It is so hard to believe Bryan is growing up, but we see a very honest, caring, loving young man, that is so fun to be around!!! We are very Proud of Bryan for being the wonderful person he is!!!

We believe all of our kids have learned many life lessons after being around cancer for two years. They are strong, compassionate, Loving beings. They accept our crazy, un-normal schedules, and have learned to adapt to changes at any given moment. They have seen our fear, and felt fears of their own, but through all of our ups and downs, they know we will always be honnest with them, and they have unending trust in us as parents with all that we face.

I would like to ask for Prayers for another little girl battling a relapse ~ Michaela (link above) She relapsed about the same time as Carl, and has been desperately fighting ever since. She is now experiencing pain, and her Neuroblastoma is rapidy growing. The doctor has said there is nothing more they can offer for treatments. Michaela is now taking oral VP16 and will have some radiation to a leg for pain. Please Pray for a Miracle, as we are not in control, only He knows the plan for each of us. May God Bless Michaela, her dedicated Mom Kim and their whole family as they look for comfort and Peace.

Wishes to you all for a Beautiful Day in the Lord+

As it is written in the book of the words of
Esaias the prophet, saying, The voice of one
crying in the wilderness, Prepare ye the way
of the Lord, make his paths straight. Every
valley shall be filled, and every mountain
and hill shall be brought low; and the crooked
shall be made smooth; And all flesh shall see the
salvation of God.
Luke 3:4-6

Love & Prayers

Kelly & Tom
& Family


Sunday, June 20, 2004 7:55 PM CDT

Happy Fathers day to all the Dads, Grandpa's, Uncles, God Fathers, Dad's to be!!!

We enjoyed our very full weekend so much!!! We spent most of yesterday and much of today in Morgan at Morgan town and country days!! We sold lemonade, and enjoyed family and friends and just relaxing in the beautiful weather!!! Today we made breakfast for Grandpa Greer, and also had supper in Morton with Grandpa & Grandma Robinson!!! It is so Amazing to see Carl feeling well again :0) Just one week ago June 12th while we were all at the Metrodome with our Minnesota's Alex's Lemonade Stand, Carl was a very sick little boy in the Hospital at St. Mary's in Rochester (Although he was enjoying Auntie Jill being with him, and he managed to sell Lemonade from his hospital room) :0)Yesterday while watching Carl take part in the Childrens Tractor Pull, we reflected back to his condition one week ago, and we feel very Blessed that he is here with us and feeling so good!!!

Yesterday Dr. Anderson phoned with the bone marrow results from last week. His explanation was that there were very minimal cells found. Less than the last bone marrow test that was done. I asked him if it was measurable, like 10% or 5%?? And he said "Less than 1%" Dr. Anderson was very pleased with the results, and described Carl as having a very good partial remission!! We are very Happy with this report, and feel very Blessed at this time!!! We will begin his next round of chemo on June 28th. After a couple of rounds of this new combination of chemos, we will repeat the bone marrows again, and Pray very hard that he is in a complete remission!!!

It will be so Wonderful to be home for a whole week before we have to head back to Rochester!! Both Sydney and Sam are active in T-ball and Softball, and it means so much to be there at their practices and games with them!!

We hope you are enjoying your summer, and doing lots of fun things with your family!!!! Happy Fathers Day!!!!

Trust in the Lord and do good; dwell in the land
and enjoy safe pasture.
Psalm 37:3

Love

Kelly and Tom
& family


Friday, June 18, 2004 4:47 PM CDT

Good Evening and Happy Friday!!!

A cool but sunny day we have had, a break from the rain is always welcome!!!

We have not heard any bone marrow results yet, probably not until Monday I believe. Dr. Anderson said he would call as soon as he gets the results back.

Carl had kind of a rough evening yesterday, he ate and ate when we got home. We went to Sam's T-ball game last night and that was so much fun!!! Those little boys are so fun to watch, it is just a hoot!!! After the game we went back to Grandma Phyllis's and were visiting for a few minutes, when Carl got this look on his face and said my tummy hurts :0( Thanks to the quick reaction of Auntie Sheila, grabbing the lid on the cookie box, and handing it to me just in time, Carl lost his cookies :0( We all felt so bad for the little guy and of course it just worries us more. I do believe that he ate so much, so quickly, and his tummy is just not back to normal yet after a week of being upset.

Today no upset tummy, and his diareah is getting better. I have been syringing some plain yogurt through Carl's g-tube several times today, and I really think that is helping!! From all the antibiotics he has had, it has not helped matters. I do believe Carl is feeling better each day!!! We also will be staying home for a full week before heading back to Rochester, which will give Carl some more time to recover!! We will return on June 28th, and start the new combination of chemo's that we will try next.

Tonight the kids and I are going to take in Garfield!!! We are excited to Escape at the Movies!!! Then tomorrow we will be selling lemonade at the Morgan Park for Morgan days. Auntie Joy and Uncle Clair are coming home tonight and we will get to see them tomorrow!!!


Here is a link to an Associated Press Story that has a picture of Sam from Alex's Lemonade Stand!!!

A.P. STORY

Have a Great Night Everyone!!!

The LORD said: "My eyes will be open and my ears attentive to the prayers offered in this place."
2Chronicles 7:15

Love to All

Kelly & Tom
& Family


Thursday, June 17, 2004 7:23 AM CDT

Good Morning to all!!!

We should be able to bust out of here soon!!! Waiting to find out from the Doctor, what the plan will be. Carl had CT scans of his head yesterday. And today he is scheduled for Bone Marrow Biopsies/Aspirates. Dr. Anderson said they were going to do four, similar to NY but they would do them all in the back and not two in the front. It will be a larger sampling than they usually get. I already collected urine this morning for the vma/hva test, Carl is such a good little guy, he woke up when I asked him to, peed in a cup then went back to sleep like nobodys business. A MIBG or PET scan will be done later, if the urine is elevated or the bone marrow has got worse.

Dr. Anderson will be talking with the Radiologist Onc here about doing Carl's Jaw radiation that we consulted about last time. He too agrees that this should be done, because it would be a prime area for another relapse if left alone, and it should be done soon, and not wait til after Carl's bone marrow is clear, as "we" know there is no set protocol for clearing relapsed NB. I don't know when this will all begin, probably within the next few weeks. As for Carl's next chemo, which was scheduled to begin the 21st of June, We will start on that day, but with a lower dose of Irinotecan, and a different drug called temezolomide. The Irinotecan works in synergie with other drugs, so this combination may be a good change for Carl. The only down fall is that it is run over two weeks. So we will go home after the first five days, then need to come back on Monday for the second five days. We certainly have learned to take one day at a time, as is the case now, as we just don't know what will be.

It would be wonderful if Carl's bone marrow showed clear!!! If that were the case, I don't know what our treatment plan would be? but that is our goal to get him back to Ned "No Evidence of Disease" Lets all try to focus some positve energy towards Carl this morning, and Pray for No NB cells in his bone marrow!!! As helpless as I have felt this past week, and beyond, I have turned Carl's life over to the Lord more than ever. It is a feeling of powerless. I turn my worry and struggles over to the Lord and trust that he is showing us the right path, that He has everything in His hands for Carl. His Great plan for Carl is at work in our lives, and we must trust that he has everthing under control, we must Believe He is with us and He knows best.

On the home front ~ Tom has been working hard this week to get the kids to the right places every day for their summer rec activities!! Thank you Auntie Sheila for taking care of getting the Lemonade Stand Donations in the mail to PA yesterday!!! And I heard you got the lawn mowed yesterday, THANK YOU SO MUCH!!!

A little stray dog showed up at our home last weekend while we were gone. If anyone is missing a little brown, scrawney male, chiuahuaua looking dog, or if you know of someone missing one, please let us know!!! He has taken a liking to Pika, and needless to say she will be getting fixed next week. I will try to post a pic of him when I get home to see if anyone recognizes him, but Tom thinks someone just dumped him off somewhere :0( and he found his way to our place???

This weekend is Morgan Days!!!! Our Carl's Commandos team will begin gearing up for our "Relay for Life" coming up in July!!! I believe we will be setting up our Lemonade Stand in Morgan this weekend to start raising dollars for our teams total, all to be directed "ear-tagged" for Pediatric Cancer Research!!! Carl is so Excited to join in with our family selling Lemonade, so we hope he will be able to be there some to help out!!! If any of you are looking for something to do this weekend, head down to Morgan for the activities, and stop by for some Lemonade!!! Maybe even served up by Carl!!! :0)

Thank you everyone for your Powerful Prayers that continue for Carl and our family!!! We so do know they are being heard, as we feel the Lords comfort and peace in these difficult times. We have learned to Trust in the Lord for He is always with us, and will never forsake us!!

God Bless you all+

Love & Prayers

Kelly & Carl


Monday, June 14, 2004 10:40 PM CDT

Good Evening to everyone!!!
Carl has had a very good day today!!! He is eating well, and his energy is amazing!! It is so good to see him wanting to go to the play room, and enjoying activities again!!! He is still getting TPN and Lipids, but the Doctor thinks that will be weaned soon. His loose stools are getting further appart, and he has put on most of the lost weight from this past week!!!

We would like to Thank those of you who have mailed us donations to include in our Alex's Lemonade Stand total!!! We are so touched by the generousity of so many wonderful people out there that are moved by what we are doing, and have found meaning in their own lives from Carl's journey! Lana ~ Thank you for collecting all of those donations, we are so moved by your act of kindness!!! We are so very Greatful!!!

We have so enjoyed being a part of Alex's Lemonade Stand Day!!! It was such a Huge High on Saturday, and I can almost feel the energy whenever I look back over the pictures again!!! Thanks Stace for taking all of those wonderful pics, and for putting them on a disc for me!!! We all should feel very proud and satisfied that we contributed to something so very Important, something so very needed!!! The last I heard, the total count was over $300,000.00 so far!!! These dollars will go to help advance pediatric cancer research to one day find that desperately needed cure!!!

It is almost 11:30pm, Carl is sweetly sleeping, and I am ready for sleep myself!! So I will say good night,God Bless you all, and may your tomorrow be a Beautiful day in the Lord

Love to all

Kelly & Carl


Sunday, June 13, 2004 6:33 AM CDT

I wanted to add a link to the St. Paul Pioneer Press story!!! The story (In the paper) features Sam yelling "Ice Cold Lemonade!!!" I will scan the photo when I get a chance (and add it to the site) ... It is sooo adorable, the photographer had to work very hard to get his picture :0) Whenever Sam would see her trying to catch him, he would duck down below the stand and hide ;0) For awhile he was trying to help by calling out to the crowd passing by!!! Here's the story:

St. Paul Pioneer Press Story

Here is another link to a story done on a little boy Jacob Mozer, this was a very informative piece both on Alex's Lemonade stand day, and about Neuroblastoma itself. go to link:

JACOB'S STORY

Thanks Sara for emailing this link to us!!!

We decided that when the kids were the ones pouring lemonade, we had more folks stopping by for a glass!!!

<<<<<<<<<<<<<<<<<<<<<<<<>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>


Good Evening this Sunday!!!

Carl is doing Great, he is feeling much better, and back to keeping us very busy again ;0)

Carl is eating and drinking well, and keeping it down, we only need to clear up his diareaha and we will be back on track again!!!

A culture is pending to determine if this is a certain virus, if not then the doctors believe this was from the Irinotecan (chemo)? We talked today a little about what we will do for treatment if this is chemo related? It sounds like a different chemo to work with the Irinotecan would be an option, since certain chemos can work differently together to change how they respond to NB cells, and ease side effects.

NEWS ALERT ~ The Early Show Monday Morning tomorrow at 7:00am will feature an update on Alex's Amazing Lemonade Stand, and may include footage of our Minnesota Lemonade Stand Effort!!!

Have a Great Evening Everyone!!!!

**************************************************************



A quick update from Mpls Mn!!!

Alex's Lemonade Stand Update ~ Carl's Commandos effort at the Minnesota Twins game yesterday helped generate $1845.00 (so far) towards Alex's one million dollar goal!!!

The most touching part of our day yesterday was when we heard from Carl at St. Mary's Hospital in the afternoon!!

Carl had set up shop at the Hospital, and was selling lemonade from his room!!! Auntie jill reported that he was set up by his door, with the help of his nurses :0)

He later even sold a couple glasses of lemonade from his bed, and helped to raise about $20.00 on his own!!!

We are so proud of Carl!!! He is our Hero!!!!!

We enjoyed our day, it was Amazing and Perfect in nearly every way!!! We were presented with a check for $500.00 from Stacey and Camp Jornada!!! Thank You Stace for all of your Awesome help yesterday!!!! You are a Wonderful Person and we all Love you sooo Much!!! You do so much for all of our children, and your true dedication always shines through, you are the best!!!!

The weather was perfect, hot and sunny, it could not have been a better weather day for selling Lemonade!!!

We managed to be interviewed and on channel 4 CBS/WCCO News, and they covered the stand Live at 5:00 and 6:00!!! We were also on Fox 9, and Kare 11 news!!!

The St.Paul Pioneer Press did a story as well!!!!

We felt we had a very successful day, and are very proud to have been a part of such a Wonderful Cause!!!!

A Big Thank you to everyone that helped to make our Mn Lemonade Stand Effort possible!!!! We could not have done it without all of your support!!!!

Carl you are the reason and our drive!!! We Love you so much and miss you sweetie, we can't wait to get back to you so we can hug and mooch you up!!!!

God Bless you all

Love & Prayers

Kelly & Tom
& Carl's Commandos!!!!!


Friday, June 11, 2004 11:21 AM CDT

Hello this Friday!!!

We are in Rochester at St. Mary's Hospital with Carl.

Room no. 3-148
Phone no. 507-287-4641
Tom's cell phone 507-430-2445
Kelly's cell phone 507-430-2446

Yesterday morning Carl was looking better, but before long was appearing to look about the same as the day prior. He has become severly dehydrated due to all of the vomiting and diahreah going on for a week now. We decided to transfer him Rochester around noon. I rode in the ambulance with Carl, and Tom went home to pack what we needed for the weekend (Lemonade Stand items) and clothes. When we arrived at the Hospital, the nurses were very shocked to see "Crazy Carl" looking so down :0(

I am Happy to report that Carl is doing better today!!! He was so very dehydrated, even after all of the fluids he was getting in Redwood. They hooked him up to a heart monitor to watch his vitals during the next few hours where he received many bolus's of fluids. Lab came in about 4 times to draw blood between bolus's to check his electrolytes and sodium etc. I was astonished by the amounts of fluids he was getting and so quickly. Within an hour you could see imporvement in Carl's skin, with fullness and color again. His eyes looked so sunk in and he really was weak from all of the loss throughout the week. Now he looks much healthier again!!! We collected urine and stool to check. The Dr.s are suspecting Roto virus?

Carl's strength is better, he will sit up and has even been eating real food without vomiting! He was struggling and kicking when the Doctor woke him once last night to check him over again, and he even made a tear, which is a good sign, I don't think he could have cried tears a few days ago. So he is definitely feeling and looking better, and is showing much improvement with eating!! We are still waiting for labs/cultures to come back. Carl will be starting something called "Gama goblin" Spelling????? it is something to help his immune system. He will also start TPN which is an IV type of feeding. We will consider starting tube feeds if Carl's food intake is not enough. Overall, we feel he is on the road to recovery!!! The bad news is, that he will not be able to come to the Lemonade Stand at the Twins game tomorrow :0( Auntie Jill will be coming down tonight to stay with Carl, so that we can get up to the cities and take care of what is needed before tomorrow and then to start our Big Day ~

"ALEX'S LEMONADE STAND" "HOSTED BY CARL'S COMMANDOS"

Carl will be there in spirit, and we will wave at him if this should get on the news!!!

I understand "Alex's Amazing Lemonade Stand" is being picked up by the Associated Press!!! It was found online and here is a link to read about it!!!

Associated Press

We are very Excited about the Event, and can't wait to get to the Metrodome and get started selling Lemonade!!!!

We would like to THANK ~

Faye Kruse and her vendors from the Morton Liquor Store for donating all of our cups to use at the Lemonade Stand!!!

Magic Water in Redwood Falls for donating some jugs of water to get started setting up!!!

Glenwood Inglewood Mpls for donating 120 gallons of water to make our lemonade stand run!!!!

Northstar Ice for donating all of the Ice to chill our Lemonade with!!!!!!

Thank You Auntie Joy for all of your hard work making these contacts for us, since our previous water and ice offer was cancelled on us at the last minute. We couldn't have done it without all of this and without you!! It takes the time, sincere willingness to help, and Love in your heart, to make such an Important Effort, a meaningful sucess!!


Lemonade Stand Information~

Come to Alex's Lemonade Stand at the H.H.H. Metrodome Plaza outside by gate F (near ticket stand)

We will begin setting up at 12:00 Noon!!!

We will be open until game time 6:10pm

Come by for Lemonade, and if you want stay for the game!!!
"Minnesota twins vs Philadelphia Phillies"

We will be selling Alex's new book "Alex and the Amazing Lemonade Stand" at the stand as well!!! Complete with a charicture likeness of Carl!!! Pick up your copy at the Stand, or get information on how to order one!!!

Thank you for stopping by, and for all of your steady Love and support you have given!!! Thank you everyone at home who has helped us get through this week, it has been very trying and stressful, but with all of your support we are always able to handle these unplanned situations.

We look forward to seeing many of you tomorrow at the Lemonade Stand!!! If anyone would like to donate to Alex's Lemonade Stand that can not come to our Event, please visit Alex's website for imformation.

Alex's Lemonade Stand

We will update with any breaking news, and will update as soon as possible after our Big Day!!

Love & Prayers

Kelly & Tom
& Family


Wednesday, June 9, 2004 4:11 PM CDT

Thank you all for continually checking in on Carl and for your notes of well wishes, and Powerful Prayers as always!!

Carl is a very sick little boy, I can't remember when he was this down and out. I am not used to seeing him laying in bed, not smiling or talking much for this many days. He has not eaten since Friday night, and he is down five pounds now. It just breaks my heart, and everyone else that has come to see him the past couple of days. It is just that Nobody is used to seeing Carl this way, it's just not him, it's just not right!

We had been going into the hospital twice a day for fluids, as Carl has been so sick and not keeping anything down. Then yesterday Dr. Medrud felt it would be better to just admit Carl and keep him on a continual IV drip and get him hydrated again. We have limited his oral fluids to small sips, trying to give his tummy a rest and to hopefully turn him around towards recovery. He is very dehydrated, and continues to have diahreah, and smaller boughts of spitting up. He is somewhat better, but mostly due to limiting his oral intake. His temp has been better, but we are watching it very closely to avoid any seziures. Dr. Nelson, the doctor on call here today phoned to Dr. Khan in Rochester about Carl this afternoon. She advised to start trying Imodium a couple times a day. We are still not sure what is causing this trouble, none of the lab/cultures are back yet, but we are thinking it is a virus of some sort? He is also getting an antibiotic in case of a bacterial infection.

We are hoping and Praying that Carl will recover and be able to be at Alex's Amazing Lemonade Stand on Saturday June 12th (This coming Saturday)!!! If not, Auntie Jill has offered to stay with Carl, so we can carry out our plans to hold the stand at the Twins Game. It will not be the same without Carl there, and I don't even want to think about that right now, I am only thinking positive thoughts that he will recover and be able to join his Commandos on Saturday!!! Please Pray very hard and send Positive Energy for little Carl that he gets over this bug soon!!!

We are still getting plans in place for Saturdays big event!!! I had been trying to contact some of our Minnesota Media over the past few weeks to see about getting our Event covered to Promote Alex's Lemonade Stand!!! I just ran home from the Hospital to check up on emails, and Carl's site, and to do an update. I received an email from Tracy Smith from CBS News "The Early Show" she is doing an update on Alex's Lemonade Stand and would like to include footage from our Minnesota Stand!!!!! We are so Excited to be involved in such a Huge Passion of ours~ To raise dollars for Pediatric Cancer Research!!! It feels so good to be "doing something" to help Carl and all of the other little children that are fighting for their lives, that should never have to endure such a terrible fate.

Thank you all for your Awesome Love and Support that never fails!!! God Bless you all+

Should anyone have to reach us in the next couple of days, you may try one of these options ~

Home ~ 507-557-2941
Tom's cell 507-430-2445
Kelly's cell 507-430-2446
Redwood Falls Hospital 507-637-4500 Carl's room 201

Love & Prayers

Kelly


Sunday, June 6, 2004 7:17 AM CDT

Monday evening update.

Please keep the Prayers coming strong, Carl is still a sick little guy. He is still has virus symptoms, vomiting and diahrea intensly. We brought him into the ER last night and he did get a bolus of fluid to rehydrate him. I brought him back in this morning again, and we will be heading back in shortly to get more fluids. One more complication, Carl is starting to run a fever :0( So I am sure we will have to go through the routine of a line culture and antibiotics. I don't think he will be admitted, since they are comfortable doing his infusions then sending us home? We are not sure exactly what we are dealing with? Probably something Carl picked up in Rochester last week. We Pray that this clears up and Carl is feeling better for our big June 12th Lemonade Stand.

Please Pray very hard for this miserable little guy to feel better.

Love to all

Kelly
****************************************************************




New Zeocast Photo's added - Enjoy!!!

Good Morning to all!!!

Carl and I got home yesterday afternoon!! We did not go to Bryan's Saturday games, Carl has been sick the past couple of days :0( The Hawks took fifth place in the State Softball tournament!!! Congrats Bryan!!!!

On Friday evening while we were driving up to Coon Rapids, Carl was complaining of his tummy hurting, and that he had a headache? Then he got sick, luckily he found an empty Walmart bag on the seat to use. We were on 35E at the time in rush hour traffic :0( I did manage to find his Zofran (anti-nausea med) and a syringe in my purse, and measured him up a dose and handed it back to him. He felt better very soon, and even ate some pop corn and had some Gatorade at the game. I knew he was not his normal self though, and thought back to earlier in the day, when he picked at his lunch. I am sure this is not chemo related, as Carl never gets sick from chemo. I think he has definitely picked up a bug of some sort. Yesterday on the way home it was the same thing, Carl was feeling sick to his tummy. He has only eaten a couple bites of mac n cheese since yesterday. Carl also has a bit of the diarreha:0( He slept well last night, but some time during the early morning we discovered him in bed with us. We will be keeping a close eye on Carl especially if he is not eating or drinking well. Please say some extra Prayers that Carl is over this little bug quickly and is feeling better soon!!!

Lemonade Stand Update~

After Alex appeared on the Today Show, we received this email from the Scott's:

We are back from NYC and The Today Show. It went very well, we thought Alex did a great job.

After the piece was over the crowd started to hand MAtt Lauer money for the FUnd. Then they started chanting 'pass the jar, pass the jar' Alex's brother, PAtrick grabbed the jar and walked around the crowd and collected almost $900 on the spot. It was very cool. We then got a donation from an office collection of $1600. That puts us $2500 closer to $1million.

Jay & Liz & Alex & Family & Volunteers

I did hear from more than one source that Alex WILL be on the Oprah Show on Monday June 7th!!! This piece was taped a couple of weeks ago, and will air on Monday. Alex has not been feeling well, and she just had some radiation treatments to her throat recently. Her parents are very Proud of her for what she is doing!!! Here are comments from her parents in another email to our NB group:

She is having a very rough time and is very sick. She amazed us on The Today Show yesterday. The Today Show and Matt Lauer said they really wanted to help promote The Lemonade Stands and would proceed even if Alex was unable to particpate. We tried to talk her out of doing the show because her throat is very sore from radiation treatments, but she insisted on going on. She did a wonderful job and we were very proud.

Jay & LIz Scott

I watched the tape that Tom made of the Today Show for us, since we missed it in Rochester. I like many others that commented on how touching Alex was, found myself in tears watching it too. I can understand how Proud the Scotts are of Alex, I can't imagine watching my sick little child do what Alex did, and keep my composure and not start bawling watching her speak, as wonderful as she did. The Scott's are very strong people and I admire them very much for their strength!!

If you have not seen the Thursday June 3rds edition of the Redwood Gazette, here is a link to see Carl's Story about our Minnesota Lemonade Stand Effort ~

CARL'S STORY

Thank you all for stopping by today, and for keeping the Prayers coming strong!!!

Love & Prayers

Kelly & Tom
& Family


Friday, June 4, 2004 1:14 PM CDT


Friday Evening Update!!!!

Carl made the Front page of the Gazette on Thursday's eddition!!! THANK'S TROY for helping us to get our story out!!!! It's Great!!!!! go to this link

CARL'S STORY

I did not get a chance to see Alex on the Today Show this morning :0( Rochester's channel cut off at 9:00am and went to something else. Luckily Tom was watching at home and taped it for us!!! I talked to Auntie Jill this afternoon, and she said she did get to watch the piece!!! She said she was in tears and called several girls at work to have them tune in as well!!! Jill described her feelings about seeing Alex talk about June 12th and National Lemonade Stand Day, she said she felt so full of Pride to be a part of this effort, and that is exactly how our whole family feels about what we are doing to help Alex!!!! I personally feel so much Gratitude to the Scott family for letting us all get a piece of such an Awesome Event to help all of our children!!!

I am getting kicked out of the computer lab so I will update more tomorrow!!!

We went to Bryan's game and they did not win, but they are all Winners in my eyes!!! It was fun!!!

Until Tomorrow

Love & Prayers

Kelly & Carl





Hello and Happy Friday to all!!!!

HAPPY 11TH BIRTHDAY TO SYDNEY RAE!!!!!

I can't believe my baby girl is already 11 years old!!! She left today to go on vacation with her Dad. She will not be with us for the Lemonade Stand on June 12th, but she will be having almost as much fun on a Caribbean cruise ;0) Syd will be back right after that, to start her softball season for Summer Rec!!! Sam is doing T-ball again this year :0) and he even asked me to sign him up for Football camp. I am so Excited for the kids to be doing some Great summer sports activities!!! It makes our lives feel normal!!!

I have several questions to answer for all of you that may be wondering about the Lemonade Stand Day June 12th, Thanks Marjean for asking!!!!

HI ROBINSONS - I'VE BEEN FOLLOWING YOUR SITE AND THE LEMONADE STAND AND I HAVE A COUPLE QUESTIONS - IS THIS GOING TO BE BEFORE THE GAME OUTSIDE IN THE PLAZA SO THERE FORE YOU COULD GO AND NOT HAVE TWIN TICKETS AND ACTUALLY GO INSIDE OR TO THE GAME OR DO YOU NEED TO PURCHASE TICKETS? ALSO WHAT ARE THE HOURS OF THE STAND - 2 UNTIL GAME TIME OR?? WILL THERE BE ANYTHING FOR CARL DURING THE GAME? I'M KEN ROBINSONS SISTER-IN-LAW AND HAVE BEEN FOLLOWING CARL'S JOURNEY AND I LIVE IN THE TWIN CITIES AND WOULD LIKE TO GET SOME FRIENDS AND COME DOWN TO THE DOME AND VISIT YOUR STAND - I'LL CHECK BACK HERE OR YOU CAN E-MAIL ME AND IF I NEED TO GET TICKETS I WILL -THANKS AND GOOD LUCK - YOU ARE ALL SUCH AN INSPIRATION AND ALWAYS IN MY PRAYERS
MARJEAN STANTON

The Lemonade stand will be set up by 2:00pm on the Plaza outside the Metrodome by gate F (by the ticket booth) The game time is 6:10pm and we will be closing everything by the start of the game, as our family, and many of our family and friends helping at the Stand will be attending the game too!! I don't know if there will be anything during the game for Carl? That would be very nice if there was, we have not heard anything at this point if there will be, such as recognition during the game for Carl, but we are hopeful!!! We will be very Happy if the Twins can make some announcements, and help us to promote what we are doing!! So, you do not have to be going to the game to visit the Lemonade Stand, but if you are interested in attending the game, you can surly purchase tickets right by the Lemonade Stand!!! Anyone and Everyone is welcome and Invited to visit Carl's Minnesota Lemonade Stand at the Metrodome on Saturday June 12th!!! Come for Lemonade and Stay for the Game!!!!!

Carl and I are getting ready to head to Coon Rapids to watch Brayn's game tonight!!! The Humboldt Hawks are once again playing in the Mn State Adapted Softball Tourney!!!!
GO HAWKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Have a Great day everyone!!!! Thanks for checking in and for keeping the Prayers flowing for Carl, our family and all of the little children battling cancer.

God Bless

Love & Prayers

Kelly & Carl


Thursday, June 3, 2004 1:04 PM CDT

Hello this Thursday afternoon!!!

Last nights game "Rochester Honkers" was a blast!!! We all were as entertained by Carl as we were the ballgame going on:0) What a little goof ball!!! His buddy Andrew took Carl to purchase one of those "Honker blower noise makers" and I am sure you can just picture the scene :0) It is very loud,annoining and he was blowing continually!! Some of the audience in front of us did not think it was so cute though, we saw a few heads turning around to see what parent was letting their kid Honk!!! :0) Good Times!!! The fireworks were Awesome, very nice show!!!

Today we ended up having Carl's needle removed, and reaccessed (needle in port for chemo) due to the activity last night, Carl's port was bumped and hit a few times. It couldn't have been his climbing over rows of seats, and climbing the backstop fence a few times ;0) Oh well, nothing too serious, just a small delay in getting hooked up for chemo. Two more days of chemo then we will be heading back home!!!

We have a few loose ends to tie up before next weekends Lemonade Stand on June 12th!!! Hey if you get a chance, visit Alex's site (link is above) and check out the Volvo offer!!! Volvo is giving away a two year lease for entering a drawing, with a donation!!! Pretty Impressive!!!

Remember to watch the Today Show on Friday if you get a chance!!! There will be a piece about Alex and her Lemonade Stand Effort!!! She will also be talking about her new book "Alex and the Amazing Lemonade Stand" that is now available to purchase!!! All proceeds of Alex's new book are going to the Lemonade Stand Fund!! Liz Scott, who wrote the book, asked me a few months ago if It would be ok with us to include a charicture with a likeness of Carl in Alex's book!!! So it will be fun to see the final product!!! The Scott's are sending Carl's Commandos a couple of cases of books to help sell. So Alex's new book will be available at our Minnesota Stand on June 12th. If anyone unable to make it to the Twins Game would like to reserve a copy of the book, Please let us know and we will keep one for you!!! This is a childrens book, and would make great gifts for any child for birthdays, Christmas or any occasion, and they are going to help the best cause in the World ~ CHILDHOOD CANCER RESEARCH!!!!!!!

Have a Great Day Everyone!!! It is warm and Sunny here, so we are Lovin it!!!!! God Bless you all!!

Love & Prayers

Kelly & Carl


Wednesday, June 2, 2004 10:04 AM CDT

Hello this Wednesday!!!

Carl is doing fine this week so far!!! He is Happy and full of energy as usual!! He started round 9 of chemo yesterday, and will complete his week on Saturday morning since we got a late start due to the Holiday on Monday. Carl is enjoying his friends here at the Donald House :0) and we just saw little Justin's Dad at the front door, so his buddy Justin (the little guy that got a bike just like Carl's) will hopefully be getting a room by tonight too!! We have been so Blessed that we have met and got to know so many Great folks here at the Donald House. Carl is right at home and feels Loved by everyone!!!

Yesterday we met with the Radiology Oncology Dr. here at Mayo to discuss treatment on Carl's Jaw, where he had the large lesion at relapse. Plain and simple, talking to this doctor, I felt like I was half out of my head for suggesting that radiation be done at this time? (keeping in mind that Dr. K. in NY thought this was very appropriate to do soon) Her thoughts on this subject were, since Carl still has bone marrow involvement, it is not urgent to treat the jaw right now. She felt that if his marrow cleared, we could do it at that time. Also throwing in that if the spot were to start growing again they would definitely treat it then? and it would not make much of a difference (in set back) if it did start to grow and they treated it then? OK I am chalking this up to Lack of NB knowledge and experience!!! I will not go into details about my frustrations, I am currently waiting for a call back from Dr. Wolden in NY (MSKCC'S Radiology Oncology Dr.)to run this by her!!

On a more Postive note ~ The Ronald McDonald House is taking a trip to the Opener of the Rochester Honker's Baseball game this evening!!! They are having a taco bar first then taking cabs over to the Mayo field!!! We are looking forward to game, and even more thrilled that the weather is supposed to be nice today!!! YIPPPEEE!!!!

Remember to watch the Today Show on Friday if you get a chance!!! There will be a piece about Alex and her Lemonade Stand Effort!!! She will also be talking about her new book "Alex and the Amazing Lemonade Stand" that is now available to purchase!!! All proceeds of Alex's new book are going to the Lemonade Stand Fund!! Liz Scott, who wrote the book, asked me a few months ago if It would be ok with us to include a charicture with a likeness of Carl in Alex's book!!! So it will be fun to see the final product!!! The Scott's are sending Carl's Commandos a couple of cases of books to help sell. So Alex's new book will be available at our Minnesota Stand on June 12th. If anyone unable to make it to the Twins Game would like to reserve a copy of the book, Please let us know and we will keep one for you!!! This is a childrens book, and would make great gifts for any child for birthdays, Christmas or any occasion, and they are going to help the best cause in the World ~ CHILDHOOD CANCER RESEARCH!!!!!!!

Wishes to you all for a Beautiful Day in the Lord+

Love & Prayers

Kelly & Carl
Ready to cheer on the Honkers Baseball tonight!!!!


Monday, May 31, 2004 5:35 PM CDT

Good Evening this Memorial Day Monday!!

We are back at the Donald House

Room no. 219 (When we were checking into our room Carl said "Hey this is Baldy's old room") Baldy is Justin Erdmann Carl's buddy!!

Phone no. 507-252-2189

We hope you all have had a very nice weekend, with BBQ'S picnic's, friends and family and many memories made!!!

Our family had a Wonderful weekend together with all of our family that were back home!! We spent yesterday working on the lettering for the Lemonade Stand. It turned out Beautiful!!! We will surly stand out blocks away!!! Uncle Denny did the construction of the stand, then with Tom help they finished painting the boards "Bright Taxi Cab Yellow" to get ready for the lettering. Then with the help of everybody that was around we got all eight boards complete with lettering!!! The finished product will read ~

top boards say:
Alex's Lemonade Stand Hosted by Carl's Commandos

bottom boards say:
Fighting Pediatric Cancer
one cup at a time

Everyone worked so hard on this, I think we all feel so good about the work we did, and sooo good knowing what this is all about!!! We are very geared up for the big day June 12th!!! and we are ready to sell Lemonade like crazy!!! Please join all of us Commandos and Pray for a Hot Sunny Day!!! No more rain, we have had enough!!! Yesterday we spotted a little duck couple swimming in the small body of water that collected on the side of the driveway :0) very cute!!

Thanks to everyone for all of your help this past weekend, we had a ball working on the Stand, and so much fun spending time together!!! It was Great!!!

I heard that Alex's appearance on the Today Show may be this coming Friday June 4th. She will be talking about all of her efforts to raise funds for Pediatric Cancer, and about what we are all doing on June 12th!! If the date changes I will let you all know. Also she is expected to appear on the Oprah show the second week of June!! Stay tuned for details on that too!!!

Carl and I are in Rochester for at least a week, if not longer. Carl will begin round 9 of chemo. He will also be having a radiation consultation tomorrow to discuss radiation treatments to his jaw bone. When Carl relapsed, the largest spot was on his right jaw bone. It has disappeared with the chemo treatments, but usually with a spot this size, radiation is done to follow up the chemo in case of any residual cells still lurking in that area. I don't know how many days this will involve, but usually radiation can be anywhere from seven to fourteen days/treatments. Carl will not receive treatments on the weekends, so we may be able to get back home for a day or two, and Carl will definitely be appearing at the Lemonade Stand on June 12th God Willing.

This coming weekend is Bryan's State Adapted Softball Tournament!!! The games will be at Coon Rapids High School, on Friday evening and on Saturday. Carl and I are planning on driving up to the cities for the games, for sure on Friday night, and hopefully Saturday too, depending on when Carl's chemo will be scheduled. We enjoyed meeting Brayn's girlfried Emily at the Awards Cermony last Wednesday evening!!! She is a very cute and sweet little girl!! Bryan is so proud of her, and he was Happy we were able to come and meet Emily!!! We ended up running into some terrible bumper to bumper rush hour traffic on 494, which delayed us by almost 45 minutes (I almost thought we were in NYC):0) We missed most of the Awards presentation, but caught the tail end of it!! Bryan received an award for "Most Dedicated Player" and he will have a name plate added to a huge plaque that hangs on Humboldt's Wall of Fame, directly below his best friend Mike York who received this award last year!!! Bryan is very proud to follow Mike up with such an Honnor!!!

Thank you all for stopping by, and for all of your Awesome notes, and Prayers lifting Carl and our family up so high!!! We gather our strength every day, from all of your continued Love and Support that never fails!!!
God Bless you all

Have a Great Evening, and a Fantastic end of the school year to all of the kids, and all of the parents!!!

And to all of the Wonderful teachers that we entrust our children to every day, that help us to raise our valuable possessions. . . Thank you helping our children to grow!!!

Love & Prayers

Kelly & Carl ~

In Rochester, and Carl is off playing with his friends, just like he has not missed a beat for two weeks!!!


Wednesday, May 26, 2004 12:08 AM CDT

Good Afternoon everyone!!!

Well the sun shone long enough for us to dress Carl up, run outside, and quick take this picture :0) He did get a few laps in too, before coming back in the house! We are still having scattered rain, and cloudy weather. Noting like our friends in Iowa, it sounds like they have got hit pretty bad :0( We are ready now for some warmth and sunshine just in time for the weekend!!!

We are Excited for the weekend, and looking forward to seeing Auntie Jill, Uncle Rick & the kids, and Jenny & Jessie that are all coming home!! Our plans are to do the lettering on the Lemonade Stand. Uncle Denny is getting the boards all done this week with Bright Taxi Cab Yellow!!! Then the lettering will be Bright Orange (of course) and black!! Things are really coming together for our June 12th Lemonade Stand at the Twins Game!!! Alex, the little girl that has Inspired this effort, will be making a couple of appearances on National TV soon. She will be on the Today Show, and on the Oprah Show. I will let you all know the exact days and times as soon as I hear when that will be!!! In an email I received from Liz Scott yesterday, she mentioned that Alex is starting a new chemo, and has she has not been feeling well. PLEASE keep Alex in your Powerful Prayers!!! Her dream is to raise one million dollars on June 12th with all of the stands that are helping her around the country. Please say some extra Prayers that Alex will respond to this new chemo, and that she feels better so that she can enjoy her special day, and reach her goal with Pride!!!

The kids and I are heading to St. Paul this afternoon to be there for Bryan's sports award ceremony!!! He is so Happy that we will be there with him, and we are so Excited to meet his girlfriend Emily!! They also are having a Parents against the kids softball game!!! It should be a fun time!!!

Thank You all for checking in, we are doing Fantastic, and enjoying our time here at home before we need to be back in Rochester on Tuesday June 1st.

Have a Beautiful day in the Lord

Love & Prayers

Kelly & Tom
& Family


Sunday, May 23, 2004 7:12 PM CDT

Good Evening Everyone!!! Thank you for checking in!!!

Wow this weekend is nearly over already. It has been cool, and rainy here most of it. The kids have been climbing the walls today, wanting to get outside, even though it was raining pitchforks out!! Auntie Joy was here this weekend and surprised Carl with an adorable power wheels, Orange Harley Motorcycle :0) He was heartbroken that he was limited on riding these past two days. Also Uncle John and Dad, finished building a Go-Cart, and brought it home yesterday!! Hopefully the weather will clear soon, so they can all get out and have some fun driving!!!

Carl is feeling better, but Sam is now coughing terribly. Actually Carl has been a little dickens the past couple of days, so we suspect he is well rested, and feeling chipper again!! We missed everyone in Rochester and Iowa this weekend. It sounds like the Auction was a Huge Success for Camp Jornada!!! That is so Great!!! Sydney and Bryan will be joining the Camp crew this summer in August for a week of fun and adventure!!! It will be a Great time to see other friends, and parents that will also be bringing their kids to camp!!! Some of the other campers are, Eric Fishcer and his brothers, Zane and his brohers, Elijah, and his brother :0) And some new friends we have met, maybe Justin and his Sister from Crookston will be there!!!

We are getting closer to June 12th, our Lemonade Stand at the Minnesota Twins Game!!! It is getting closer, and we are trying to get everything arranged and done!! Kevin White has put together a "Carl's Customized" Tri-Fold brochure for us to use at the stand, and to hand out before the Event!!! If anyone would like to view the brochure, or download a copy to print, you may find this at the above link "Carl's Zone" Kevin has added several options for the brochure files. A jpeg, less resolution, to download quicker, or a Higher resolution copy which is better quality, but takes longer to download. Feel free to check out and Print copies of Carl's brochure!!! Thanks Kevin for all of the work you put in to this for us!!!!!

Have a Great Evening Everyone!!!

From God's little devotional book for Moms ~

Give your troubles to God;
He will be up all night
anyway...

He will not allow your foot to slip;
He who keeps you will not slumber.
Psalm 121:3

Love & Prayers

Kelly & Tom
& Family


Wednesday, May 19, 2004 1:53 PM CDT

Thursday Update!!!

Shrek was Awesome!!!!! We had a blast, I can't remember when I laughed so hard :0) The kids Loved it too, almost as much as us adults!!! I think we really needed that!!!!

Carl woke up this morning with a croupy sounding cough :0( We decided to cancel our plans to go away for a couple of days, and stay close to home instead. I worry so much now, about Carl getting sick. He has been doing so good, we just want to keep him well with all of his treatments coming up.

We will miss you all at the Auction tonight in Rochester. We Pray that it turns out to be a Huge Success!!! I know you will have lots of fun, and we will be anxious to hear all about it!!!

We send our Prayers and Wishes to Eric and his family this weekend at Dubuque's Relay for Life!!! May God's Love and comfort embrace you at this very emotional time.

Love & Prayers

Kelly & Tom
& Family
**************************************************************



Good Afternoon Everyone!!!!!


Shrek 2 is open today YIPEEEEEE!!!!!!

Carl is having a Shrek Party tonight!!!! We decided to ask all of our family here in town, to join us at the movies tonight!!! We are all very Excited, and looking forward to sharing this special Event with Carl!!! I guess we have been waiting for this day, for a very long time :0) Each time we would rewind and restart the Shrek 1 movie, during Carl's treatments and many Hospital stays, I would often think to myself, Shrek 2 can't come soon enough!!!! Don't get me wrong, I do Love Shrek 1 It has provided many many hours of comfort and security during difficult times during the past two years. It has been familiar comfort, during troubled times, and we will cherish those hours forever!!! We are Just so Happy to finally get to see Shrek 2!!! I'm sure it will have "new" bodily function sound-effects such as "Shrek Fluffing in the water" from no 1 :0) That we laughed at over and over again, and again, and again!!! ;0)

Carl had his dental work done this morning. He had 10 of his teeth capped, as he had some pretty bad cavities, and the start of some serious decay. Dr. Dorthe Hartmann did Carl's dental restorations. She is such a Wonderful Pediatric Dentist!! We are so blessed to have found her for Carl. Dr. Hartmann understands all of the things we are dealing with concerning Carl's treatments with his disease. She also has been down this same road with her little girl, who lost her battle to Luekemia about a year ago at the age of four. Dr. Hartmann is so sweet and gentle, she is a very special person! Carl did so well, and as usuall jumped right up and was ready to go again!!! He is out doing chores with Daddy right now!! Carl is supposed to take it easy the rest of the day, since he was sedated for the procedure. We thought a nice evening with family and loved ones, laughing at Shrek 2 could not be too hard on him tonight!!!

We have a couple of busy days coming us ~ Whats new right?? Tomorrow night the Camp Jornada Fund Raiser is going on at the Radison in Rochester!!! Sydney, Carl and I will be driving down to Rochester for the Event!!! To read about this wonderful Camp for children with Cancer and their siblings, you may go to this link ~

CAMP JORNADA

Also Stacey has a caringbridge website go to ~
JORNADA ROCKS

Then On Friday, we will be heading to Dubuque Ia to join Eric Fischer and his family for their "Relay For Life" We are looking forward to seeing the Fischers again, and sharing Eric's Relay and "Survivor Lap" with Carl's first cancer buddy!!! Please continue to keep the Fischer's in your Prayers, as they just lost Eric's Grandma Judie this week to Cancer. I'm sure Eric's Relay will be very emotional this year.
ERIC'S PAGE

God Bless

Let all who take reguge in you be glad; let them ever
sing for joy. Spread your protection over them, that those who love your name may rejoice in you. For surely O Lord, you bless the righteous: you surround them with your
favor as with a shield.
Psalm 5:11-12

Love & Prayers

Kelly & Tom
& Family


Monday, May 17, 2004 8:15 AM CDT

Good Morning this Monday!!!

Thank you for looking in on Carl, and for all of your Awesome Prayers being sent up to Him every day!!!

Yesterday we enjoyed a Great Day at the Lucan Park for Captain Dan Days!!! It was a Wonderful Celebration, and very Emotional as well. The presence of Love surrounding us all, we experienced a very touching Ceremony, beautiful music, and a balloon release. It was so nice to see John and Char Frank and some of their family too! John looks so Good!!!! Thank you Laurie and Terry for the donation to Caring Bridge, on Behalf of John and Carl!! This really means so much to us, as Caring Bridge has been our Life-Link for nearly two years now. We have used this website to communicate daily, to keep in touch with our many family and friends with urgent medical news, to update on Carl's progress, including his ups and downs, but most importantly it has been our source of support from all of our readers, and from many other families we have come to know throughout Carl's journey. The support given through your touching notes, and words of commfort and endless Prayers offered up, have keep us stable, steady & strong to march on in this battle wherever it may lead us!! We So Appreciate your Loving gesture, as we can't imagine what life would be like, without Carl's site and without all of your Love & Support we receive through Caring Bridge!!!
Thank You and God Bless all of you!!!

I learned this morning that Eric Fishcer's Grandma Judie has passed away. She no longer feels the pain of suffering with cancer, but feels the peace and comfort from Above. ERIC'S PAGE

Our sweet little friend Kala is doing so Great!!! I was so Happy to read her update today!!! GO KALA!!!!!
KALA'S PAGE

Thank You Patti & Freddy!!! Carl's box arrived and he opened it first thing when we got in the door on Friday!!! The boys are enjoying everything you sent back!!!

Thank You Robyn & Kevin for the Great Shrek cards!!!! It came at a perfect time, I cleaned the boys room this weekend, and they now have new Shrek Bedding!!! They are so Excited to sleep in their own beds now!!!! As you all probably know, Shrek 2 is coming out this week!!!! YIPPIE!!!
check out the SHREK sleeping beauties in the photo section!!!

Thank You Linda for sending the Adorable pictures of Sam!!! He Loved getting a letter of his own :0) The pics are so Great, it looks like he was enjoying his time with you!!!

Have a Great Day everyone!!!!!

God sends children for
another purpose than
merely to keep up the
race - to enlarge our
hearts, to make us
unselfish, and full of
kindly sympathies
and affections . . .

from God's little devotional book for Mom's

My little children, let us not love in word,
neither in tongue; but in deed and truth.
1John 3:18

Love & Prayers

Kelly & Tom
& Family


Friday, May 14, 2004 11:00 PM CDT

Good Evening to all!!!!

Carl and I are home again, and we have had a Exciting first evening home!!!

We had a Bon fire tonight, and had friends and family over for some Go-Cart fun!!! Dale & Kathy Heiling with their little guy Brian, came over with two Go-Carts!!! Also Uncle John & Auntie Sheila, Katie, Uncle Chuck, Dick and Julie Sindelir and Josh were here too!!! The kids all took turns riding our path through the grove, around and around many times!!! Even us grown ups took turns, and we had many good laughs:0) It was a Great night, kind of chilly so the fire felt Great for warming our buns up!!! We took lots of Great pictures, so I'm sure they will show up here on the site some day soon!!!

Congratulations to our Nephew Nick McVenes, who will be making his Confirmation this weekend!!!! We wish you the best and hope you have a Wonderful Celebration!!!

I mentioned I would talk about Captain Dan Days for this weekend, but I am unable to find my schedule :0( We will be heading to Lucan on Sunday to take part in the festivities!!! I understand there will be T-ball, A balloon release, a Lemonade Stand (Carl will help out at) and many other activities for both Saturday and Sunday!!! We look forward to seeing many of our friends at the Event!!!

Have a Great Weekend Everyone!!! Enjoy your family, and don't forget, it is ok to be a kid once in awhile too!!!

Love & Peace

Kelly & Tom
& Family


Thursday, May 13, 2004 1:50 PM CDT

Good Afternoon Everyone!!!!

Thank you for checking in on Carl, as Always!!!! And Thank You for remembering us in your Prayers. We are doing good here at the Donald House, Carl is through with his chemo for the day, and we have no other appointments for today!! Tomorrow morning Carl will see an ENT to have his ears cleaned out. They have become very plugged with wax, and our attempts to use drops to clear them out has not been making head way at all!! Then after chemo we will head back home, and should even be home before the kids get out of school!!!

This afternoon, we will meet with a couple of Make A Wish volunteers here at the Donald House. They called while Carl was doing chemo, and wanted to visit us here today! We have been trying to get Carl's wish all finalized, but our plans have become changed, as Carl's Wish trip is not what it started out to be, so they need to come and re-interview Carl to find out what he would like to do. Carl's wish started out to be going on a cruise ship, and since he Loved Disney so well, we thought it would be Great to do a Disney Cruise just like some of our friends did last year!!! Carl's trip was approved, but due to changes made with what Disney will allow for a compassion cruise, the trip is now cut down from what it used to be in the past. The curise was a seven night package, but has been changed to a four night cruise. When I spoke to one of the Make-A-Wish people about the change, he told me about Disney and their change, but if we were set on a seven night Cruise Wish Trip for Carl, we could certaily look into other Royal Caribbean seven day packages, since MAW deals with Royal Caribbean, and this should not be a problem. So to make a long story short, we did some researching, and discussing with the kids about different options and places to go!! One of the options was an Alaskan Cruise, with an intinerary including a Salmon Fishing excursion from one of the ports, which sparked an HUGE Interest from Carl and Sam, since they have heard all about fishing in Alaska from cousin Nickey, when he went there last year!!!! We talked of many different choices and options, but the kids liked the Alaska idea the best! Our meeting today with MAW will hopefull get things settled, and they will see that Carl is very much interested in Alaska, and fishing!!! Some of the other neat things about this trip were Whale sightings, and panning for Gold :0) If anyone knows Sam and Carl, they know they are serious about Rock Collecting (even from our front yard rock garden)!!! :0)

This weekend if anyone from around home is looking for something to do, head out to the ~ Lucan Captain Dan Days!!! This is going on Saturday and Sunday, and includes many sporting events, and other activities!!! We will be there on Sunday, and help to run a Lemonade Stand at the Event!!! Some of the proceeds of the stand will be donated to Caring Bridge in Honnor of friends of the Ourada's John Frank and Carl Robinson!!!! It sounds like a Great weekend is planned, with loads of fun activities!!! I don't have my program here with me to list specifics, but I will try to talk about this more when I update from home tomorrow!!!

Have a Great Evening everyone!!!!!

Lots of Love & Hugs

Kelly & Carl


P.S. Carl has a new friend from Crookston his name is Justin, his site is ~ JUSTIN'S PAGE
I told Justin's mom that I have a couple of niecs from Crookston!!!


Tuesday, May 11, 2004 10:11 AM CDT

Good Morning to all!!!!

We are doing Great here in Rochester, and keeping very busy!!! Carl is enjoying his friends ~ Justin, Mohomad, Andrew, and Michelle!!! It is so comforting to come back to our family and friends here at the Donald House, Carl fits right in with his buddies and Loves them so much!!!

Sorry for the lack of update, each time I log on to the computer, I end up lost in numerous emails and responding to many notes we have received. I know that you all are so faithfully checking Carl's site for updates and news, We are so Blessed that we have all of your support and continuous Love wherever we may be!!! Thank You for keeping us close in heart, and for your steady Pray that we feel so strongly each and every day!!!!

Carl's week started out very Good!!! We met with Dr. Khan yesterday morning to review his blood counts and get him set up for the week of chemo. I asked if any reports were received from NY and they have not arrived as of yet. In our daily struggle to try to make sense of Carl's situation and decide what course of treatment is the right path, we continue this tug of war, called ~ "What do we do?"

On Sunday morning I was going through emails that were new, and noticed one from my friend Diane, Sophia's mom. I opened her letter and read over several fowarded notes from other parents that she sent to me, containing questions about the "Mini-Allo Transplant" This was brought up to one of our Doctors a few weeks ago, but we did not receive a positive response to this option. So we kind of let it go, and have not pursued it any further. We have kept this in the back of our minds however, and felt that we still needed to find out more about this posibility.

I sent a reply to Diane, and within a couple of minutes, the phone was ringing, to my Surprise it was Diane!!! We visited for awhile about the Mini-Allo Transplant idea, and how we both feel so strongly about this being the answer. Diane is still working towards this with Sophia, and she has gathered some promissing data from other children that had success with this transplant. I still feel a nagging in my gut that will not go away, and a feeling abut this that I can't leave alone. Both Diane and I feel the same way about this transplant, and the feeling is that it just makes sense!!! I told Diane that I feel I need to bring this up again on Monday with our Doctor, and see what she thinks about the idea. We would be seeing Dr. Khan, and she is a Transplant Doctor, so she would be able to give her opinion, from a transplant perspective!

I did ask Dr. Khan about the possibility of Carl doing a Mini-Allo Transplant (low toxic chemo- with donor bone marrow) She was very receptive to the idea, and said that she was actually in the process of writing a protocol for a Mini-Allo-transplant that would include Neuroblastoma!! She said Yes this would definitely be a possibility for Carl! She did say that he would need to be NED (no evidence of disease) before considering the transplant. So with this I felt for the first time in a very long time, that we maybe have a plan, and a feeling that there is something for Carl that is promissing!!! We know that there are many issues with this transplant, and it is not always a good outcome. The biggest threat is Graft Vs Host disease, which can be fatal if the patient does not respond to steroids and other medications that work to combat this complication.

For now we will continue with the current chemo schedule, and Pray Pray Pray that Carl's bone marrow becomes clear!!! We are very satisfied to keep Carl on this treatment plan for now, as long as he is doing so Great as he surly is!!! His hair is even growing back :0) He was looking in the mirror this morning when he was washing his hands, and he smiled at himself and patted his little head :0) He said "My hair is coming back"!!! in the most pleased tone of voice he could use!!! He is a Dolly!!!!!

We have been enjoying our friends here from Wisconsin, Karla with Baby Jacob!!! Talk about Dollies!!!! We went out for supper last night to Bon's Buffet!!! That was alot of fun, and it is always so Great to be able to chat with Karla, she is a very special Mom and a Wonderful friend!!!
To read about Jacob go to JACOB'S PAGE

Also we got to see Holly with her little girl Maya on Sunday and yesterday before they left to go home!!! It is Fun for Maya to have someone to play with and for Carl to learn how to play with a girl, and not always with his rough and tumble brother!!! Maya would refer to Carl as "My Friend" :0) What a Precious little girl!!! Holly moved to Lacrosse Wi from Michigan to be closer to Karla and her family and to be closer to Mayo with all of Maya's medical needs. We have a good chance of seeing them often, as they are here almost as much as we are!!! To read about Maya go to MAYA'S PAGE

Please keep all our friends in your Powerful Prayers, and remember Kala who is in transplant here at Mayo. She has many rough weeks ahead of her, and can use all the Prayers we can send up for her right now!!! Her page is KALA'S PAGE

Thanks for stopping by and for all of your Love and Support that continues to raise us up!!!

God Bless you all

Kelly & Carl


Friday, May 7, 2004 9:54 AM CDT

Good Morning and Happy Friday!!!

I emailed Dr. K. this morning to see if the final results were available. Carl's Bone Marrow Aspirates are about the same as they were here at Mayo. The urine is still pending. So I guess at this point we did not learn anything that we did not already know. I am still not sure what the uptake (highlighted area in the femur, from the radio-active nuclear med injection) on the MIBG scan means? I guess the PET scan does not pick up everything? So it appears that we may still have some NB present other than just residual bone marrow cells? Unless this is considered ganglio (sp?) (mature benign nb cells) ???
I guess we were hoping to have a better idea first hand, of Carl's recent test results. Perhaps we will learn more when we see the Dr. at Mayo on Monday, as all the reports were sent to Rochester from NY. I asked about having Bone Marrow cells checked for N-MYC amplification. What this is all about is ~ Neuroblastoma either does or does not carry this particular gene. If the NB is N-MYC amplified, it has made 200 copies of itself, and is usually more difficult to stop. It is better to be non-amplified, but not always a better outcome, as both types seem to be just as complicated. It is just a bit of information that is good to know, but knowing does not change anything usually. When Carl was first diagnosed, a biopsy of the tumor was never taken, and tested. So we have never known one way or the other. When surgery was performed in Dec-02, this should/could have been analized at this point also, but was never done. I actually was not aware of this "N-MYC gene, until we started to become educated about NB when we learned of MSCKK, and met other parents fighting this common war. So it has just been one of those things we always wondered about, and never found out with Carl's tumor? It is not right to assume that all stage 4NB is amplified, because I heard somewhere that only 20% of stage 4 is amplified! Would Carl have been treated differently had we know he was definitely not amplified? ~ no, because his NB had metatisized to many areas making him high risk anyway! I am assuming that since the Bone Marrow aspirates were minimal (like Mayo's results) that they were unable to test for this??? But maybe it will be in the report???

Carl and I will head back to Rochester on Sunday to be there for Monday to start round 8 of chemo! Please keep Carl in your Prayers for this next week of treatments coming up!!

Sydney and her 4H Group Birch Cooley did a Wonderful Job at their "Share The Fun" competition last night!!!! They did not take first again but we all think they are Winners!!!!

Brayn had a Great date last night :0) It was fun to talk to him after he got home!! He is coming out to spend the weekend with us, and I'm sure we will hear more about his new girlfriend!!!

I would Like to take this opportunity to Wish all Moms, Grandma's, God Mothers, Aunties, Day care providers, Special Nieces, and Cousins that know and Love our children so much!!!

A VERY HAPPY MOTHERS DAY!!!!!

To all the Mom's that have lost a baby, or child of any age, I Pray for peace, comfort, strength as there is nothing more difficult than loosing your child. There have been so many Mom's in our NB group that have lost a precious, innocent child this past year to a deadly disease cancer. And they struggle for strength to make it through each and every day, sometimes each minute as they miss their
child so desperately. One of our Mom's posted this piece, and I felt it very touching, and wanted to share this with all of you, especially the Moms who have lost a child.


> Surviving A Child On Mother's Day
> By
> Erma Bombeck
>
> If you're looking for an answer this Mother's Day to why God reclaimed
your
> child, I don't know. I only know that thousands of mothers out there
today
> desperately need an answer as to why they were permitted to go through the
> elation of carrying a child and then lose it to miscarriage, accident,
violence, suicide, disease or drugs.
>
> Motherhood isn't just a series of contractions; it's a state of mind.
From the moment we know life is inside us, we feel a responsibility to
protect and defend that human being. It's a promise we can't keep. We beat
ourselves to death over that pledge. "If I hadn't worked through the eighth
month". "If I had taken him/her to the doctor when he had a fever". "If I
hadn't let him use the car that night", "if I hadn't been so naive, I'd have
noticed he/she was on drugs or needed help with depression."
>
> The longer I live, the more convinced I become that surviving changes us.
After the bitterness, the anger, the guilt and despair are tempered by time,
we look at life differently. When I was writing my book: "I Want To Grow
Hair, I Want To Grow Up, I Want To Go To Boise", I talked with mothers who
had lost a child to cancer. Every single one said that death gave their
lives new meaning and purpose.
>
> And who do you think prepared them for the rough, lonely road that they
had to
> travel? - their dying child. They pointed their mothers toward the future
and
> told them to keep going. The children had already accepted what their
mothers
> were fighting to reject. Even those children who died a sudden death are
able
> to spriritually touch their parents and help them live on.
>
> The children in the bombed-out nursery in Oklahoma City have touched many
lives. Workers who had probably given their kids a mechanical pat on the
head without thinking that morning were making calls home during the day to
their children to say, "I love you."
>
> Joy and life abound for millions of mothers on Mother's Day. It's also a
day of appreciation and respect. I can think of no mothers who deserve it
more than those who had to give a child back.
>
> In the face of misery they ask, "Why me?" but there is no answer. Maybe
they
> are instruments who are left behind to perpetuate the lives that were lost
and
> appreciate the time they had with their children. They are the ones who
help
> pick up the pieces when tragedy occurs and others have lost their
children.
>
> ~*~*~*~*~*~*~*~
>
> Love, Peace and Comfort to you this Mother Day!

God Bless+

Kelly & Tom
& Family


Thursday, May 6, 2004 10:54 AM CDT

Hello this Thursday!!!!

I will start out with no updated news on the rest of the tests ~ Bone Marrow Aspirates

I am however feeling a tad more anxious, and I'm not sure why it's not as though we fear hearing relapse, we are already beyone that phase. It could be taking longer, since I asked about having any cells found, to be analized for gene amplification. So it is possible the cells are still under investigation!! Or there is so few they are having to look so closely to detect any??? That would be good I suppose, but we still are not sure what the uptake on the femur is all about? Especially since the PET scan from Mayo was clear?? At any rate, it will be a relief to hear the final verdict, and go on with a plan!!!

The boys are outside, busy on Carl's new tractor!!! While we were in NY, the Tim Orth Foundation donated this tractor to Carl!!!! What a Wonderful Surprise for Carl to come home to!!! He Just Loves it, and has kept himself very busy, even when Sam is at school:) Yesterday he made many trips around the yard picking up sticks and fallen branches and hauling them off in the wagon to the grove!! It was so cute watching him, he was so serious about his work!!! A very special THANK YOU to the Tim Orth Foundation for thinking about Carl and making this little boy very Happy!!!

About the pictures above ~ The adorable picture of Carl and the older gentleman Pop, Patti's father, Yes I thought that was a Wonderful Photo too!!! Carl is so Loved by everyone there, we are so Blessed to have Loving family even when we are as far away as NY!!! Pop and Carl have a special bond and it is so fun to watch them both together!!! The first time that Carl was introduced to Pop, there was an immediate connection, and a special admiration for each other!!! It warms your heart to watch Pop and Carl interact!! Pop had not been feeling well a couple of weeks ago, Patti was telling us, so it was so good to have him there with us that afternoon, and to see Pop enjoy Carl again, and Carl fool around with Pop again too!!!

An update on Bryan ~ he is so Happy these days!!! He is doing well with his Softball team, and he has a new girlfriend, the third base player ~ Emily!!! Brayn and Emily are going on a date tonight after school, they are going to the museum, and out for supper!!! I am so Happy for Bryan, he just seems so Excited to have a friend to like, and do things with!!! Emily is also disabled, she has Spina Bifida, and uses a wheelchair too. Emily can also walk some like Brayn, so it really sounds like they have alot in common, and can understand each others challenges!!

Sydney will be performing thier skit "Share The Fun" with her 4-H group tonight in Olivia. This is the third year for Birch Cooley to be involved in Share the fun!!! The first two years they won 1st locally and were awarded a State Fair Trip with thier act!!! The group is doing a Great Skit again, and will do just as good!!! GOOD LUCK TO BIRCH COOLEY ~ Or should I say ~ BREAK A LEG !!!! (so not to jinx them) :0)

Thanks everyone for keeping up with Carl's Journey and for all of your constant Prayers that are keeping us going!!!

Please remember all of our other frineds battling cancer and other illenss in your Powerful Prayers!!

...be thou an example of the believers,
in word, in conversation, in charity,
in spirit, in faith, in purity.
1 Timothy 4:12

Love & Prayers

Kelly & Tom
& Family


Monday, May 3, 2004 7:29 AM CDT

New Zeocast pictures added!!!!

Test results so far ~

Bone Marrow Biopsies negative
still waiting for Aspirates

MIBG improved from November

We should hear the rest soon!!!

Have a Great Evening everyone!!!!
********************************************************************





I received an email from our Sweet niece Mandi, and she has some info on a Minnesota Twins Ticket Deal :0) Here it is ~
Matt and I went to Applebee's for dinner last night in Willmar and they are giving away one free ticket to any Twins game (home games only) with the purchase of their baby back ribs. Matt and I thought this was a great idea for anyone who is wanting to go to the game for the lemonade stand, (and also if you like ribs! :) I just thought you would like to know in case you wanted to get a few free tickets, or know anyone that does. They are doing this deal at all Applebee's until the end of April, or while supplies last.

Thanks for the info Mandi!!!! We always eat at Applebees when we are in Rochester, so we will take advantage of that deal, and I know others may also that are interested in attending the June 12th Home game against the PA Phillies!!! during our Alex's Lemonade Stand Event!!!!!!! Thanks So Much!!!!!
*************************************************************

Good Morning to all, and Happy May 3rd!!!

We are home safe and sound, we must say though, our plane ride back home was the worst either of us has ever been on for turbulance etc. We were very glad to feel the wheels touch the runway when we landed. Carl had a Great flight though and didn't seem to mind the bumps and huge jerk we felt (it rattled my cage a bit) Carl just enjoyed watching his Nemo DVD and slept the rest of the way :0) When we drove up to our house, Sydney and Sam were ready with Smiles and Hugs to greet us!!!!

We had a Fabulous Saturday afternoon at Freddy & Patti's home with friends and relatives joining us for a Beautiful gathering!!! As Ann described in the guestbook, we all had loads of fun and laughter!!! It felt just like a typical Robinson function!!!! We are so Blessed to have such Wonderful family and have met the Greatest friends in NY :0) We had so much fun, and we already miss all of you guys!!!! THANK YOU ALL for such a Great day, and for your Royal treatment as always Freddy & Patti!!! It was so sad saying goodbye at the airport, we didn't want to let go. On the ride home from the airport, Carl asked us "Can we take a cab to NY"? :0) I have some great new pictures to add of our week in NY, I hope to get to that soon!!!!!

Today I am home with my two little boys:0) Sam woke up with a cough, and said he was not feeling well, so he is taking up residence on the couch right now. I think he also misses Carl and wants to be with Mommy today:0) I'm sure he will be feeling better soon, and will be up in action, playing with Carl and his new treasures he brought home from NY. Carl is feeling Great and is already up and busy!!! It is sunny here, and we are hoping for a warm day instore:0) Planting will be going on, so we will keep Pika in doors as much as possible so she doesn't chase the planter and get herself planted:0) She was also Happy to see us all come home last night!!!

We will soon begin working on our next project "Alex's Lemonade Stand Day" on June 12th at the Mn. Twins game!!!! We talked to Auntie Joy and Uncle Clair yesterday when they picked us up from the airport, and we have some good ideas going!!! We are gearing up and getting Excited for the Event!!! I will be sending out a group email to all that have expressed interest in helping on the project, If anyone else is available to help that day, or would like to get involved on any level, just drop me a line and I will include you on our list!!! Even if it is just for ideas and suggestions!!! Our hopes and plans are to make this one of the most "Successful" Lemonade Stands in the Nation on this day!!!! Thank you all!!!!!

We are coming up to a busy couple of weeks for Carl. He is due back in Rochester on Monday May 10th for his next cycle of chemo. Then the following week he is scheduled to have some dental work done at the Mankato Hospital. Carl will need to be sedated for X-rays, cleaning, filling cavities, and capping of some teeth. I will also need to talk to our Oncology Doctors at Mayo about starting some radiation treatment to Carl's Jaw, where he had the largest lesion at relapse. Dr. K. in NY felt it was important to get started on that very soon. I am not sure what all will be involved, but I am guessing it will require a week or two of radiation treatments to that spot (probably under sedation) so we may be spending some extra days in Rochester in the coming weeks. This radiation will interfere with normal growth in Carl's jaw where it will be treated, so this will also mean future reconstructive surgery as he grows and gets older to correct any damage done to that spot.

We are waiting for the other test results and reports to be finished from NY. I will update later if I hear anything today. I may not hear back for a couple of days though.

Thank you everyone at home for helping us out so much with the other kids (through sickness and all) and with farming and the chores, and the cows getting out, and EVERYTHING!!!!!! We could not have done it without all of your Love and Help!!!!

Thank you to Auntie Joy and Uncle Clair for having us at your home, for helping us to get to the airport, for keeping our car, and for picking us up again yesterday!!! Thank you for the Great lunch, and just for always being ready to offer of yourselves whenever needed!!!!

Thanks to Freddy & Patti and Ann & Keith and family in NY for all of your Love and Support for us whenever we have come to NY!!! You guys are so Wonderful!!! We feel so welcome and wanted as you open your Hearts and Home and we feel so much "At Home" whenever we are with you all!!! Carl is a lucky little boy to get so much Love and Attention from you all!!! Thank you so much, and know that we appreciate everything you do for us, we Love you all so dearly!!!

Patti ~ Carl Love's you 33 inches :0)

When we were riding in the car with Freddy & Patti, Carl was measuring his outstretched arms with a little tape measure he found, and it measured 33 inches:0) He was telling Patti that he Loved her this much!!!!!

Thank you to ALL of our family and friends who have kept Carl and our family in your ~ So Powerful Prayers!!! Although we don't know what our future holds, we feel peace and comfort, and we know that you will always be there with Love and Support as you so faithfully have done.

God Bless all of you!!!

Love & Prayers

Kelly & Tom
& Family


Saturday, May 1, 2004 11:53 AM CDT

Hello to all!!!!

We are getting ready to have a BBQ at Freddy & Patti's this afternoon!!! We are enjoing our time here in NY and have Loved seeing our friends at the Donald House and Medical Team again!!! Carl is a little bit more spoiled than he was before we got here, as he has been treated like a King here at Freddy & Patti's!!!

We met with Dr. K. yesterday to go over test results so far. The CT's were clear, but the bone marrow tests were not back yet. The MIBG scan showed uptake in the right femur, but this is due to the bone marrow cells still present, not hot spots still showing lesions. We will have a better picture when all of the final reports are in, which should be Monday or Tuesday. For right now, there is nothing new that we didn't already know about, or anything that has changed. So for now we will continue on the current chemo schedule, then retest/scan in a couple of months, unless the final reports show something different, that we are not aware of, then we will need to make some decisions on what changes to make for Carl's treatment.

We will be heading back home tomorrow and should be back on the farm sometime in the evening!!! We miss all of you guys back home, and can't wait to see you all!!! We must say that we have very much enjoyed our trip, and Loved seeing everyone here again!!! We are already missing all of our family and friends here, but will be looking forward to seeing everyone the next time!!!

Wishes for a Wonderful weekend to you all!!!!

P.S. Bryan ~ Patti said you should be here, there is enough food to even feed you :0) We miss you and we will be calling you soon!!!! We need to hear about this new Gal!!!

Love & Huggs to all!!!!

Kelly & Tom
& Family


Wednesday, April 28, 2004 3:08 PM CDT

Hello this Wednesday!!!

We are doing well here in NY, Carl seems to be back to normal after sedation for CT scans, and Bone Marrows today. Tomorrow he will have the MIBG scan, then Friday we will meet back with Dr. Kushner to go over what results are back at this point.

We have enjoyed seeing the nurses and so many familiar faces at the hospital, and Dr. Kushner was very Happy to see Carl looking so good and full of his crazy mischief!!!
Everyone has commented on how tall Carl has grown, today we got to see Gail, Carl's primary nurse :0) She was So Excited to see Carl today, she even got to mooch his cheek when he didn't expect it :0)

We have been keeping busy with our free time!!! We went up to Central Park yesterday after we were through at the clinic. We walked around, and went to Conservatory lake where they rent out little remote control sail boats. We spent a little time trying to figure out how to direct the boat the way we wanted :0) It was fun and a learning experience!! Carl wanted to slide in one of his favorite playground areas in the park. Tom and I enjoyed watching him over and over again, as he climbed the steps, then stood there watching the other children for awhile, then he would finally take his turn. Then he would run back up the steps and do it all over again:0) We walked up to Rockefellar Center, and then back to the Donald House. Carl actually walked about half of the whole trip, he didn't want to ride in his stroller, and was happy to run up to each intersection, then jump over the cracks and holes in the street as he held my hand crossing over each block :0) It is so good to see him Happy and so full of Energy!!!

Back home it sounds like things are not going as well as we had hoped. The flu is going around the house at Uncle John's and Auntie Sheila's :0( and everyone is taking their turn at being sick :0( We are sorry to hear that, and hope that this bug is gone very soon.

Thank you for checking in with us!!! And Thank you for all of your Prayer!!!

Please keep Kala in your Prayers this week and in the weeks to come, as she is having her Bone Marrow Transplant soon. KALA'S PAGE

Love & Huggs to all of you!!!!

Kelly & Tom
& Carl




Monday, April 26, 2004 7:03 PM CDT

Hello this Monday Evening!!!!

It has been a rainy day here in NY, but we have enjoyed our free day before all of the scans/tests begin.

We went to Tom and Carl's favorite place to eat for dinner. The Silver Spoon on first street :0) Carl Loves their meatloaf, and always eats there so well!!! They give you huge portions that you could never finish!!! So with the steady rain, we didn't venture out too far. We then decided to take Carl to the "Little Shop of Pottery" he painted a couple of projects, and Mom even made something fun!!! One of the girls there does face painting, so Carl got a lady bug painted on one hand, and Blue from Blues Clues on the other hand :0)

They had a house supper tonight!!!! Yippie!!! We were just as Excited as we get in Rochester :0) But before that, a group came to the house to make dirt cakes with the kids!!! Carl made two dirt cakes and planted bouquets of colorful flowers in the center of them :0) He thinks that they are decorations though, ~ we told him these cakes are to eat, and Carl says "NO YOU CAN'T EAT THEM"!!! They are the cakes that have chocolate pudding and layers of crushed oreo cookies, with gummy worms on top :0) They really are YUMMY!!! We will have to convince him later that they really are meant to eat!!! heeheeehee

Tomorrow begins Carl's week of appointments. He will get blood drawn first, then see Dr. Kushner. then the rest of the day will be free!!! Wednesday will be CT. scans and Bone Marrow Biopsies/Aspirates. We are Excited to visit the new Pediatric Day Hospital to see jsut how Wonderful everyone says it is!!! We are also Excited to see Dr. K. and all of Carl's nurses that he has not seen for awhile:0) I'm sure they will all be surprised at how much Carl has grown, and how Great he is looking!!!! And at how much of a wise guy he has turned in to!!!!

Thank You for keeping the Prayers coming so strong!!! We really are certain that all of the Prayer going up for Carl is making a difference in his health, and in our lives!!!

Please continue to keep our friend Kala in your Prayers this week and in the months to come, as she is having her Bone Marrow Transplant soon. KALA'S PAGE

Please Keep Eric Fishers, Grandma Judie in your Prayers. She is loosing her battle with cancer, and experiencing much pain. Please Pray for her, for painless days until she is called home to our Lord. And for the Fischer family during this difficult time. ERIC'S PAGE

God Bless you all+

Love & Prayers

Kelly & Tom
& Family


Sunday, April 25, 2004 3:36 PM CDT

Hello from NY!!!

We are safely at the "Donald House" and feeling very much at home again!!!!

Freddy & Patti met us at the airport, and greeted us with Waves and Smiling faces!!!!! We were so Happy to see them, and give them Big Huggs!!!! Carl didn't seem to miss a beat with his mischevious antics all the way into the city:0) He Loves to fool around being a little clown, and he Loves the attention he always receives!!! Thanks Freddy & Patti for all your help!!! We Love You So Much!!!

We got checked into our room, and the first thing Carl said was "Lets go find Jay" So we headed down stairs to the Game room/computer lab. We did find Jay and Virginia, and Richie too!!! It is Great to see familiar faces and good people we have missed so much!!! Carl is running around just like he is at home again, and I am typing next to Jay right now!!! We have decided to go out for supper with Jay and Virginia tonight!!!

I will sign off for now, and update more tomorrow!!! Thank you for keeping Carl and our family in your Prayers!!!

Please remember Kala this week as she will be soon having her Bone Marrow transplant in Rochester.
KALA'S PAGE

P.S. Thanks Everyone at Home for all of your help with the kids and animals!!!!! We Love You Guys!!!!!!!

Have a Great Evening!!!

Love & Prayers

Kelly & Tom
& Family


Friday, April 23, 2004 2:27 PM CDT

Hello from the farm & Happy Friday!!!!

Carl and I are back home!!! It is a Beautiful sunny day, the birds are singing, and the flowers are shooting up everywhere :0) When we were out and about yesterday, Carl noticed some Mommy flowers (dandelions) :0) The season of Mommy flowers is about to begin :0) Oh how I love to receive beautiful bouquets from my little boys:0) We must always put them in water, (even the stemless ones are floated in water) Carl carried some of his belongings into the house after our drive home, then he headed out side and soon I heard the faucet on the house running. I called out to Carl "what are you doing in the water?" he replied "I'M watering your plants" the shrubs in the front yard are starting to grow!!! Carl is becoming quite a little gardener:0) He planted a cup of morning glories in Rochester for one of the House activities!!! He was soo Excited yesterday to discover his little cup has a sprout popping through the soil!!! He insisted on holding his cup all the way home in the car :0)

I received an email from another NB parent today. He is from Texas, and is trying to get a Lemonade Stand going at the Houston Astros game on June 12th!!! I guess we have started something here in Minnesota, and I am so Happy and Proud that we are helping Alex with a Lemonade Stand at the Twins game!!! Hopefully the Astro's will also support our cause and allow a Stand at their game too!!! Wouldn't that be Awesome!!!! We are So Excited about the stand, and will be starting to put our ideas to work and make plans soon!!!

We will be re-grouping here at home, then paking to head out to NY on Sunday. Carl found a new little backpack/luggage bag on wheels (It has FDNY, with flashing lights) to bring along, so he is very Excited to pack his bag with fun things to take with!!! I would like to ask for your POWERFUL PRAYER POWER this coming week, as Carl will have scans/tests at MSKCC. He will have an MIBG scan, which he has not had since relapse. He will also have bone marrow ASP/BIOP (4 samples taken) then CT scans and urine. Carl has had two rounds of chemo since his last Bone Marrows were done at Mayo. I have hope, and I have Faith, and Confidence that Carl could show NO evidence of disease. Please send UP Prayer, and Positive Energy out to NY for Carls scans/tests to come out clear!!!!!!! This may be a long shot, but I feel so good about it, and I think we can do it!!!!!!!!! GO CARL!!!!!!!!!!!!!!!!!!!!!!!!

Wishes to you all for a Beautiful Weekend!!!! Enjoy your children, and give them big Huggs and Mooches every chance you get!!!! Don't forget to be Thankful for Mommy flowers and display them, so your little people will see how much you really cherish them!!!!

God Bless+

Love & Prayers

Kelly & Tom
& Family


Wednesday, April 21, 2004 3:21 PM CDT

Hello to everyone this Wednesday Afternoon!!!

We are doing Great here in Rochester!!! The weather has been wet and dreary, but Carl has managed to stay Happy and is making the most of being here with his friends at the "Donald House" :0)

Carl has another new little friend, his name is Rhett, I'm not sure how to spell his name?? It is like Rhett Butler?? Anyway he is just a little doll!!! Yesterday he had a new little "leaf blower" complete with goggles and all. Carl spotted that and of course that was the new hot item he instantly wanted!!! Rhett's Mom said that she found his on the clearance rack at Walmart for $5.00!! So today after chemo, we made a trip to Walmart to look for a leaf blower. The two little boys can blow leaves like crazy now!!! Carl was in such a hurry to rush back to the Donald House after we went shopping, he didn't even care if he ate lunch!!! I told Carl that the other children were all at the clinic still, and they will be back at the House later tonight!!! He is such a little go-getter, he is so Happy to be playing, and making new friends every day!!!

Last night there was a House Supper for all of us here!!! They served pork chops, mashed potatos and gravy, and corn and rolls and desert!! It was very good, and they even waited on us at our tables, what a treat that was!!! Tonight they are having another house supper, I think it is going to be Sloppy Joes :0) Yumm!!! We all were joking last night at supper, how our lives are so boring :0) We all get so Excited about House Suppers, and then our other Excitement here is watching Reality TV!!! We enjoy the Reality shows, because we know what our reality is, I think it must give us an escape or something. We all can laugh about it though, so that is good!!! We decided we are all lacking for good Entertainment!!! When Tom was here with Carl on Monday and Tuesday, they went to Fleet Farm, and spent a couple of hours checking out everything they had in the store. Then Tom said he took Carl to Walmart and let him climb on the go-carts in front of the store for about a half an hour :0) See what I mean!!!!!

We are half way through the week, just two more days of chemo, then we can head back home for the weekend!!!! We will be home until Sunday, then we will fly out to NY for a week of tests/scans at MSKCC. Today when I got back in from shopping with Carl, I logged on to my email, and noticed an email from Dr. K. in NY. His email asked ~ How is everything going? I had to chuckle, I don't know if he realizes we are going to see him next week :0) He knew we were trying to get scheduled to come out there, because he felt it would be useful to re-evaluate Carl there, but he may not know just when we are coming. In any measure, it is just a good feeling that he is concerned, and cares enough to question how everything is going!!!

Thank you all for checking in on Carl, and for keeping the Prayers flowing so Strong!! Our Spirits are High as we feel Confident that the Lord is working in our lives!!

Please remember in Prayer all of our family and friends that are also battling Cancer or other illness. There are so many children battling relapse with NB right now, please Pray for the Doctors and Scientists working on new treatments, that a cure be found soon.

Gods Blessings to all of you+

Love & Prayers

Kelly & Carl


Monday, April 19, 2004 6:48 PM CDT

Hello and Good Evening this Monday!!!

We have all had a Good day!!!

Tom and Carl are settled in the "Donald House" and day one of chemo went well. The only little inconvience was Carl having his port de-accessed and re-accessed. Tom was not satisfied with the way his port looked, and since Carl would be needing to stay accessed for the five days of chemo, he asked the nurses when they got upstairs to the PITC if they would re-do the needle and tegaderm. We are so paranoid about a line infection, we have been very particular about port accesses ever since. We don't mean to be pain in the butt parents, but a little extra cautious to avoid unnecessary problems. We Appreciate the Super Sweet nurses that take care of Carl in the PITC where he gets his chemo, they are all Excellent and it helps that they know Carl and they Love to see him when he comes!!!

I must have talked to Carl about a dozen times today on the cell phone :0) It helps now that we have these new cell phones with unlimited moble to moble service!!! I told Carl "I miss you!!!" he replied "I don't miss you!!" I said "What??" He then said ~ "I Love you but I don't miss you!!!" What a little stinker!!!! He cracked me up with that one!!! He was enjoying being back at the Donald House!!! We splurged on a new little three wheel bike, to replace the little bike Auntie Jill bought Carl last year. When Carl and Sam were both in Rochester together a few weeks ago, that other little bike was in three pieces :0) It not only was well used from Carl, it had been fought over by the two boys for a week!!! So anyway, Carl took off on his new littl bike as soon as Tom and he checked in and carried their bags up to thier room :0) I'm sure Carl has already visited all of his buddies ~ Andrew, Kala, Mohamad, Michelle :0) I'm glad he is so Happy!!!!! But I do miss the little bugger :0)

I work tomorrow, then I will head down to Rochester to take over, so Tom can get back home to work himself. It becomes difficult at times for me to keep my job going, and needing to be gone so much with Carl. Then it is even harder to justify Tom using his limited vacation days to be with Carl, so that I can work for a day. It gets hard to find a balance, without guilt or frustration!!! We both put Carl first, and we know that he is always our Priority no matter what, and we are Greatful for those that do understand and go out of their way to try to make our lives easier!! Especially to family and friends that have picked up the slack for us so many times without a complaint!! We feel like we owe all of you guys so much!!!! We hope you realize how much we Love you all!!!

On the home front here, Sydney is outside searching for her Volley Ball that got blown away in the storm last night. Sam is out fixing things, I last saw him walking by with a chain and boldt, he was fastening a swing somewhere on a tree? Bryan WON his second softball game today against Robinsdale!!! The score was 13-5 and Bryan got two RBI'S!!!! Congratulations Bry!!!! Pika is Good, she loves to be outside in this warm weather :0) She desperately needs a bath!!! Oh and Mom is fine, just a little tired!!

I would like to ask for Prayers for a cousin of Tom's, Loni's husband, who has relapsed with Leukeimia. Please say some extra Prayers at this difficult time.

Please keep all of the children fighting NB and other cancer in your Powerful Prayers. And all our other friends that are battling other illness.

Lemondae Stand Idea ~ Our Cousin Ann had an Idea of mentioning somthing about Alex being from Philly and Carl being from Mn. Like ~ Carl from MN helps Alex from PA sell Lemonade to fight Pediatric Cancer!!! Great Idea Ann!!!!

Wishes to all for a relaxing evening!!!

I found two verses that I would like to share tonight!!

Speak up for those who cannot speak for themselves,
for the rights of all who are destitute. Speak up
and judge fairly; defend the rights
of the poor and needy.
Proverbs 31:8-9

I thank Christ Jesus our Lord, who has given me
strength, that he considered me faithful,
appointing me to his service.
1 Timothy 1:12

God's Blessings to all

Kelly & Tom
& Family


Saturday, April 17, 2004 7:15 AM CDT

Good Morning to all!!!

I have been getting terrible about updating, but with that means that Carl is doing Fabulous, and we are living some normal days, and enjoying life the way we should be!!! The boys spent a full day of playing outside, I did catch them (digging) more than once yesterday :0) They came running in the house with a bucket, I could only imagine what was inside, YIKES!!! Sam said "Mom what is this?" I slowly looked in and to my delight, saw a fuzzy little curled up ball. They had found a little caterpillar by the wood pile. Off they went to set him free, when shortly after that they came running back in to tell me they found their fuzzy guy a friend:0) After convincing the boys that they would probably fare better outside where they found them, they did go and return them to the wood pile. Later Sam and Carl came driving by on their Gator, Carl carrying a worm, he announced on the run by, "We're going to put my worm back now" :0) I can only think of how very Blessed we are to be able to watch Carl playing and having so much fun with his brother!!! The gift of Precious time, never to be taken lightly. We are so Blessed!!!!!

We lost another Neuroblastoma Child Jordan Luke on April 14th. Jordan put up the most Courageous fight, and surprised his doctors and family at how long he continued to fight! Jordan was a very Precious Loved child, and will be Terribly missed forever! Please keep the Luke family in your Prayers as they endure this very difficult time. These are Jordan's rules, and we will always remember them!!

Jordan's Rules: Let your children sleep in your
bed, let them make messes, have more patience,
don't take anything for granted and tell them
you love them all the time

Our kids like the sleep in Mom and Dads bed rule. And they take advantage of it whenever they can!! If Carl does not start out in our bed, he usually finds his way in sometime during the night. He snuggles in and goes right back to sleep. Last night I looked at the clock and he made his transition about 4:30am :0) One thing Sam likes about Carl being gone for treatments, is that he can take his turn and sleep with Dad or Mom :0)

I have gotten really Bad at remembering our Families Birthdays. It seemed we would be away, and a whole slug of them would pass by:0( So I have decided not to mention Birthdays anymore, as it is too hard to keep on top of, and I risk forgetting too many!!! I will however mention Uncle Chuck's Birthday which is April 18th!!! Uncle Chuck is Carl's God Father and a very special person to Carl and our whole family!!! We will Celebrate Uncle Chuck's Birthday tomorrow at supper in Morton!!! This is planting season, so we hope that Uncle Chuck and Tom will be there :0)
HAPPY BIRTHDAY UNCLE CHUCK!!!!!!!!!

Lemonade Stand News!!!! I spoke to Andrea the contact person from the Minnesota Twins. We are beginning to make plans and gather ideas for our "Alex's Lemonade Stand ~ hosted by Carl Robinson" on June 12th at the game. I have received a few emails with Great Ideas and offers to help out!!! It looks as though we will be setting up on the Patio/concourse area in front of the dome. This outside location should be busy with thousands of people milling around before the game. We can set up early, and take advantage of the pre-game traffic around that area!!! I also asked to have an announcement made before the game, and that would not be a problem!!! I thought we could send a few larger kids (Tall & older not fatter ;0)) around with posters on (like human billboards) I have lots of ideas and am getting lots from you too!!! Thank you and keep the ideas coming!!!!! One thing that is really neat, is that Alex is from Philly!!! The Minnesota Twins are playing the Philladelphia Phillies on that day ~ June 12th!!! How Ironic is that??? I am quite sure that the Phillies already know who Alex is and what she has done for childhood cancer. Alex is quite a celebrity, as she has appeard on the CBS News many times!!! It will just be a fun time, and the fact that the Twins play the Phillies will make it even more special!!!!! I will keep you all posted on the Plans!!!

Please keep in Prayer all our friends battling Cancer, and other illness. Please keep Carl in your Prayers this next week as he will be doing another round of chemo in Rochester. We pray that this week goes off without a hitch, so that we can keep our plans to fly out to NY the 25th, for his Evaluation at MSKCC.

Thank you for stopping by, and for signing Carl's guestbook!!! We do Love to read your notes, it makes us smile and brightens our days!!! I check many other caringbridge sites of our friends as often as I can, but sometimes I don't leave a note :0( even when I know how much it means to me to read Carl's notes. Even a "Hi I was here" can mean so very much to people!!!!!

Have a Beautiful Weekend in the Lord

In your hearts set apart Christ as Lord. Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have. But do this with gentleness and respect, keeping a clear conscience, so that those who speak maliciously against your good behavior in Christ may be ashamed of their slander.
1 Peter 3:15-16

Love & Peace

Kelly & Tom
& Family


Wednesday, April 14, 2004 8:36 PM CDT

Hello this Wednesday Evening!!!

This week has sure been flying by, can't believe it is almost Thursday!!! We have been blessed with some warm sunny weather the past couple of days, but we hear it is supposed to rain and be windy :0( The kids have been in their glory playing outside and enjoying the things they have been waiting for all winter!!! It's so fun to watch them in action, full of old tricks and new ideas :0)

I have Great news to share!!!! We have been approved to host our June 12th Lemonade Stand for "National Alex's Lemonade Stand Day" at the Minnesota Twins Baseball Game!!!! We are so Thrilled, and Excited to have this Amazing Opportunity Granted to us!!!! We will be working with an appointed person from the Twins to coordinate all of our plans. We already have some family members volunteer to help, and if anyone else would like to help in any way, we would be more than Greatful for any help offered!!!! I will keep you all informed as the Event draws closer, what is all happening!!! We will be getting Media Coverage, since this is a National Event!!!

Some things we will be needing ~

Ideas
Posters
flyers
cups
persons to help at the event

Donations to the Event are Welcome ~ Checks can be made out to "Alex's Lemonade Stand" We will collect all of Carl's donation contributions, and mail them together to Alex's Foundation when the Event is through.

To read more about "Alex's Lemonade Stand" you may visit the above link.

Not too much else new, just getting ready to return to Rochester on Monday for Carl's next cycle of Chemo. Please say some extra Prayers that Carl manage to make it through this next week uneventfully, without any infections. We will be leaving then on Sunday the 25th for New York for a week of evaluation at MSKCC, and to see Dr. Kushner to discuss Carl's situation, and treatment options. We are also Thrilled that we will be getting together with our NY cousins again!!! We are Excited to see them all again!!!

Thank you all for checking in, and for all of your Powerful Prayers that continue to lift Carl and our family up so very High!!! God Bless you all

Those who know your name will trust in you, for
you, LORD, have never forsaken those who seek you.
Psalm 9:10

Love & Peace
Kelly & Tom
& Family




Monday, April 12, 2004 9:16 AM CDT

Good Morning to Everyone!!!!

HAPPY EASTER MONDAY!!!!!

I would like to Thank Auntie Sheila, & Uncle John and the girls for our Wonderful Day Yesterday!!! Everything was so nice, and Dinner was so Yummy :0) I think today would be a very good day to start a serious diet!!! We had a very FUN weekend, and made many special Memories with our children and family!!! As you can see from the pictures above (New Easter Zeocast) that we all shared many smiles :0)

We are so very Blessed to be spending these Precious times together with Carl!! The gift of Precious time, never to be taken for granted. Of course we hope and Pray for many more years of Easter Sunday's to Cherish. Without knowing from week to week what we will be facing, and only taking one day at a time, we try to "drink in" these Speical Moments to hold in our hearts all of our days, whatever that may be? We are so Thankful for our Yesterdays, and for every Today we are given!!!

Thank you for stopping by, and for keeping the Prayers flowing for Carl's complete healing!!!

Have a Beautiful Day in the Lord+

Love & Prayers

Kelly & Tom
& Family


Sunday, April 11, 2004 9:00 AM CDT

HE IS RISEN


Happy Easter to all our Family and Friends!!!!

Thank you for checking in on Carl and for all of the Prayer that we feel so Strongly every day!!!

Carl's appts. went very well in Rochester on Friday!!! His neck incision looks Great, and his blood counts are Fantastic!!! Carl has even gained a little weight!!!

We are getting ready to go to church, and then go to Auntie Sheila's & Uncle John's for dinner following!!! We have been having a very nice weekend so far, it has been fun seeing all our relatives that are home, and the kids have been having a ball playing outside with their cousins!!!

Have a Beautiful Day in the Lord

If we walk in the light, as he is in the light, we have fellowship with one another, and the bloodof Jesus, his Son, purifies us from all sin.
1 John 1:7

HAPPY EASTER!!!!!!

Kelly & Tom
Bryan, Sydney
Sam & Carl


Wednesday, April 7, 2004 7:39 PM CDT

Good Evening to everyone!!!!

Thank you for checkin in on Carl today and for keeping our Family in your Powerful Prayers!!!

Today, Carl and I were guests of our sweet little niece Sarah, at her schools "Special Person Day" We enjoyed refreshments, and played Jepordy in her classroom!! We got to look around the school, and we saw Grandma Phyllis and Auntie Janet in Katherine's class, they were her guests!!! It was fun, and we enjoyed our time with Sarah today!!! Sam spent this time with Auntie Sheila while we were at school, and enjoyed playing outside as it was very warm this afternoon!!

I will be bringing Carl to Rochester on Friday to have his 10 day counts checked, and to have his neck looked at, from his node biopsy. It actually looks perfect, without any sign of infection or swelling. The best part is, we will be coming right back home after this appointment!!! Carl will start his next round of chemo on the 19th of April. Then we will be making a trip out to New York on April 26th to see Dr. Kushner and to do an Evaluation there. It will be good to compare Carl's scans to the scans that were taken in November that detected the relapse. We will have a true picture of Carl's progress on this chemo regimend he has been treating with. We will also discuss Carl's situation, and talk about other treatment options.

The kids are getting Excited for Easter!!! We will be having dinner at Uncle John's and Auntie Sheila's The kids have a tradition of coloring Easter Eggs at Grandma Phyllis's each year on Saturday :0) We are looking forward to seeing all our family that will be coming home this weekend!!!!

A nice evening to all!!!

He hath made every thing beautiful
in his time . . .
Ecclesiastes 3:11

Love & Prayers

Kelly & Tom
& Family


Monday, April 5, 2004 11:30 AM CDT


New Zeocast Photos added!!!

Also check out the Photo link ~ a couple from the Tim Orth Benefit Saturday Night!!!

*****************************************************************


Good Morning to all!!!

We hope you had a Great Weekend!!! We enjoyed the Beautiful weather, and the kids were Happy to spend most of the day out doors yesterday!! Tom put the Trampoline back up, so it was a Jumping afternoon on Sunday!!! We then grilled hamburgers at Grandpa & Grandma Robinson's for supper:0) It really feels like sping is here!!!

We stopped at the Tim Orth Benefit on Saturday night on our way home from Rochester. It was sure a Great turnout, we were Amazed by all the people there. We made it for part of the opening Cermony, and just before they introduced the Basketball teams. The kids Loved the Mascots again, Crunch, Gee Wiz, a blue Jaz guy, and the Baylor Bear were all there!!! I got some pretty good pictures of when they were slam dunking :0) I will have to update pictures soon!!
We wanted to stay long enough to get some pictures with the Mascots, and autographs, but it was getting pretty late, and Carl had really put in a full day with getting chemo, and the drive back home and all.

Sydney had a Great time on her Spring Break!! She went to a Monster's Inc. on Ice show!!! She had lots of stories to share, and she really enjoyed spending time with her Grandpa & Grandpa Bladon :0) Grandma Bladon sent a box of towels home with Sydney to have for her very own, all the time, as she went shopping and got some new towels for her bathroom. She said that Sydney always choose these towels to use while in Arkansas!! Grandma said, think of it as a Hug from us every time you use these towels!!! I thought that was pretty special of Grandma to do!!! How Lucky Sydney is to have such Wonderful Grandparents that Love her so much!!!

We are busy here trying to get caught up on many things that have been left undone for so long. It seems like a vicious cycle!!! With the warmer weather, it makes it easier to get motivated. Today it is very windy out, and not quite as nice, so the boys have stayed inside all morning so far. So I have two little helpers :0)

Wishes to all of you for a Beautiful Day!!!

Love & Prayers

Kelly & Tom
& Family


Friday, April 2, 2004 4:55 PM CST

Hello and Happy Friday!!!!

We have been on the go all day!!! The boys are full of Energy and Spring Fever!!!!

We went to the Zoo today in Byron, and got out in the Beautiful sunshine for awhile before needing to get to the Hospital for Carl's chemo, and antibiotic. One more day of Chemo left!!!

Tom is on his way to Rochester tonight, and we will get Sydney back tomorrow afternoon, after she gets back in to Minnesota!!! The boys have been asking about her daily, so I do believe they miss their big sister:) We will be anxious to give her big huggs and mooches again!!!

Tomorrow evening is the Tim Orth Benefit in Bird Island. We are going to try to stop on our way home!! Carl was one of the recipients last year and we are so very Greatful for the help this foundation has supported our family with!!! We were asked to come back this year, as they like to include past recipients each new year!!! The kids are already excited about going to the benefit. They know that all of the Mascots will be there, and they are looking forward to seeing them in action!!! Only Carl went last year, but we were able to see videos of the benefit after it was all done, so they all know how fun this event is!!!

Thank you for stopping by, and for keeping us all in your Powerful Prayers!!! We are so Thankful for all of your support and Love that continues so Strong!!! God Bless+

Have a Great Evening all!!!

Love & Prayers

Kelly
Sam & Carl


Thursday, April 1, 2004 10:44 AM CST

Good Moring to everyone!!!

Thank you for checking in on Carl today, and for all of your Prayer Power that continues to give us strength each and every day!

The Bone Marrow tests were back yesterday. Carl still has NB cells in his marrow :0( The wording was "very minimal" so it is probably not as bad as it could be. But even one cell is not desireable. The sweet Fellow Dr. made a special trip back from the clinic, to the PITC to give me the report yesterday, he came over earlier but missed us, as we were not there yet. He was very positive about it, and reassured how everything else was looking so good for Carl, as he did respond Excellent to the chemo!!! It will just take a little longer to clear his marrow. The Bone Marrow test that was done last month showed no NB cells. What this all means, is that the sample pulled out the first time showed no cells. This latest sample did show "very minimal" so some were detected. The sampling is a random draw, even if it shows no cells, this does not mean that none are there, it just means that the random sample drawn, did not contain any cells. So there were probably NB cells still present at the time of the last test, but none were drawn that time.

We are keeping our Faith Strong, and we are confident that Carl's marrow will clear of these nasty cells once and for all!!! The plan will be to continue on the chemo we are using for a couple more months, then repeat the Bone Marrow Biopsies. We will then go from there with whatever treatment plan appropirate based on the results. I can't think of the verse right now, but It goes something like this ~ God answers our Prayers, in his time. And that is just what I believe!!! In His Time. . .

Today we are off to the park for some play!!!! Yesterday we visited Silver Lake Park, and the boys fed the Geese, and played on all of the Playground equipment!!! They had a ball, and are ready to go back again right now!!!!!! So I had better get going :0)

Have a Beautiful Day in the Lord+

Love & Prayers

Kelly
Sam & Carl


Tuesday, March 30, 2004 8:41 PM CST

Good Evening everyone!!!!!

A quick update, before I get kicked out of the computer lab at the Donald House :0)

We are out of the Hospital Yeaaaaa!!!!!!!!!

Carl's final pathology report came back today, and the Nodes in his neck show NO Neuroblastoma!!!!! We are still waiting for the Bone Marrows, and hopefully will get those results tomorrow!!!! THANK YOU PRAYER WARRIORS!!!!!

We were able to get Carl started on his first day of chemo tonight before they discharged us!!! So one day down, four more to go. Carl napped during his infusion, and Brayn, Sam and I enjoyed the Minnesota Gophers Girls game!!!! We are back at the Donald House and will go to the Peds Infusion Therapy Center tomorrow at 4:00pm for his one dose of antibiotic (two doses left) and the second infusion of chemo. We will try to get the rest of the times adjusted so that we can leave to go back home somewhat early on Saturday!!!! WOW this feels so good!!!!!! We are Truly Blessed with so Many gifts!!!!

The plan we will follow for now will be to continue on this chemo for awhile. Dr. Anderson is thinking even up to a year? We will continue to research, and explore other therapy options, but for now we are pleased that Carl is doing so well, as he has responded to this chemo so Wonderful!!!!! We are almost afraid to stop right now, since everything is going so perfect!!!

Thank you for lifting Carl up and all of our family, we are feeling every one of your Prayers and feel the Power of this Energy working in our lives, we are So Greatful!!!

Please keep all of the other NB warriors in your Prayers, and say some extra Prayers for Eric Fischers Grandma Judie who is also battling cancer.

God Bless+

Love & Prayers
Kelly & Tom
& Family


Monday, March 29, 2004 10:16 AM CST

A Quick update :0)

Carl is doing Great!!!! He got back up to his room, and asked to eat first thing!!! Then he wanted to get out of bed and get on his tractor and GOOOOO!!!

We do believe our son is a close relative to the Energizer Bunny :0)

Tom has left to head back home, and I am with the three boys at the Donald House until we need to be back to the Hospital for an 8:00 dose of antibiotic. Bryan will stay til Wednesday, and Sam until we come back home:0)

We should know more tomorrow, as far as when chemo can start, and when we will be able to be discharged from the hospital and so on.

Thanks again for your Awesome Prayer Power, and for Lifting Carl and all of us up so Faithfully!!!!! Please Pray for all the NB warriors, and all our friends battling cancer or other illness.

Please keep our sweet friend Sandy in your Prayers as she having more testing, and may need to return to Mayo.

All our Love and Appreciation to everyone!!!! God Bless!!

Love
Kelly
*******************************************************************




Good Morning, this Beautiful Sunny day!!!!!

THANK YOU PRAYER WARRIORS FOR ALL OF YOUR STEADY PRAYERS!!!

Carl went into surgery about 9:30am this morning. Before we knew it, Dr. Moir was coming around the corner to give us the report. Carl did Great, he removed about 6 or 7 nodes in his neck to have tested. The rapid test, and initial look of the nodes were good!!!! He believes that they are just fine (NO Neuroblastoma)!!!!! they just look like angry nodes acting up from the strep infection.

PRAISE THE LORD WE ARE SO VERY BLESSED!!!!!

Carl is not up in his room yet, but should be coming soon!!! Dr. Moir wanted to be sure his neck was cleaned out well to avoid complications from the surgery with his infection. He also said he would be getting some extra antibiotics today. It may take a couple of days to get the confirmation on the nodes, we will probably need to wait until then to start his chemo. Chemo will be five days, so we will not be getting home as soon as we thought, but that is very minor compared to what we could be dealing with right now!!! We are so very Thankful for our many gifts!!!

Thank you for checking in on us, and for keeping the Prayers coming so strong!!!! Carl is a Bright example of Gods Miraculous works!!!!! PRAISE THE LORD HE IS SO GOOD!!!!

God Bless you all, we will update soon!!!!

Love & Prayers

Kelly & Tom
& Family


Sunday, March 28, 2004 7:48 PM CST

Good Evening to everyone!!!

Thank you for checking in and for all of your Prayers that continue to lift Carl up!!! One of the Nurses Denny, just stuck his head in Carl's room and asked Tom & I "What's he like when he is 100 percent?" :0) We just laughed!!! Carl and Sam are riding the halls on their tractors, until they have to quit here in a couple of minutes for Carl to get hooked up for his 8:00pm antibiotic infusion.

Surgery will be in the moring, Carl will have his Node biopsy, and Bone Marrow Biopsy & Aspirates. Please Pray very hard that the node is only enlarged from the strep infection. We will be anxiously awaiting the results, we should know something right away from the Node, but it may take a couple of days to hear back on the bone marrows. If both of these biopsies are clear, then this would mean that Carl should be in remission (NED no evidence of disease) again, since the PET scan did not show any other areas with Neuroblastoma from the relapse. Everything has cleared in his body that appeard in Novemeber on the scans and tests. We will be able to Shout "Cancer No More in 2004"!!!! This will be a Glorious day for all of us!!!!!

I have a very special Prayer request ~ A very dear friend Sandy, that we have met from Carl's website, who has been following Carl's journey for a very long time is having a procedure tomorrow morning too. Sandy was also a patient at Mayo and is a Cancer Survivor!!! She is very special to us, and has been one of our Faithful Prayer Warriors!!! Please keep Sandy in your thoughts and Prayers tomorrow too. Pray for negative results, and continued Good Health!!!! We Love you Sandy, and we are Praying very Hard for you too!!!!

Have a Great Evening everyone!!! We will update tomorrow as soon as Carl is out of surgery and we have some Good News to report!!!! Send Positive Energy & your Powerful Prayers!!!! We Can Do It!!!!!!!!

We Love you all!!!!

Kelly & Tom
& Family


Friday, March 26, 2004 4:11 PM CST

Happy Friday Everyone!!!!!

Today is so Beautiful!!!! It is 62 and Sunny!!!!!

We just got back from Silver Lake Park with our friends Chris and Randy Johnson, who surprised us with a visit this afternoon!!! Carl enjoyed all of the Wonderful playground equipment, and trying to get Randy to keep up with him :0)
Thanks so Much you guys we Loved spending time with you on such a Goergous day!!!

The Doctors are planning on doing the Node Biopsy, and Bone Marrow Biopsy on Monday. I found out this morning that the infection is NOT a line infection like I originally thought. It is a Strep infection in his body. Which actually makes even more sense that the Nodes are enlarged from this infection, since Strep is found in your mouth, and the Nodes in the neck would probably react to such an infection. We don't know how this all started, we can't blame it on his line again, but we are glad he does have an infection to blame the Nodes on!!!

We will need to head back over to the Hospital by 5:00pm for Carl to get his next dose of antibiotics. Then Bryan will be coming down to spend some time with us here :0) Bryan is on Spring Break this coming week too!!! Tom and Sam will be back tomorrow, and Sydney is on her way to Houston to begin her Spring Break :0) We still don't know how long we will be away from home, or in the Hospital? We are hoping to get Carl's chemo started Monday, and then we will possibly be able to be home by next Friday!!!

Thank you for checkin in, and for keeping those Prayers flowing so Stong!!!! We are certainly feeling their Peace.

God Bless all of you

Love & Prayers

Kelly & Carl


Thursday, March 25, 2004 4:11 PM CST

Good Afternoon to All!!!

Even though we are still waiting for answers, and results, we are finding so much comfort and peace!!!

Carl's surgery has now been postponed until at least Monday due to his Strep line infection. The Oncology team, as well as the Surgery team, both are thinking the same thing that I was thinking, that the enlarged Nodes may just be due to this infection. They seem to be shrinking a little each day, and Carl is feeling so good!!!

We are so Pleased with this thought, we choose to hang on to this with every thread we are given!!!! We, as well as all of the Doctors, do not want to let our guards down however, until we are certain (by biopsy) that Carl's nodes are not enlarged from Neuroblastoma!! I was so delighted that the Docs were all on the same wave link as we are!!! We are soooo Blessed and Thankful that God is very actively working a plan here just as we were feeling so helpless. I do believe that he is helping us to sort this out, and in the process, our Prayers are being Answered!!!

Since surgery will not take place tomorrow morning, Tom has left to head back home. We were able to get out of the hospital for a couple of hours earlier today, and went shopping a little and out for lunch. Tom will go back to work tomorrow, then get packed up and come back again on Saturday with Sam. Sydney will be leaving after school tomorrow to spend her spring break with her Dad, and then visit her Grandpa and Grandma Bladon in Arkansas for a couple of days!!! We will miss her, but we know that she will have such an enjoyable time on her break!!! She Loves to visit her Grandparents, and see what new Projects her Grandpa Doyle is working on :0)

We are not sure yet what day surgery will happen?? We also are hoping to get Carl started on his 5 days of chemo, which is what we desperately need to do, to keep him on schedule. If his biopsy is negative, then we should be able to start chemo right away. We will probably be here in the Hospital until next week? But may be allowed out and just need to come to the Peds Infusion Therapy Center for chemo and antibiotics?? We will see!!!

Thank you for sending Prayer up for Carl, and all of your Positive Energy coming our way!!! We feel so good right now, so we do believe it is working!!!!!

With Love and Appreciation!!!!

Kelly & Tom
& Family


Wednesday, March 24, 2004 1:35 PM CST


Thursday morning about 2:09am

As I was drifting off to sleep, on the most comfortable couch/cot next to Carl, I heard a faint knock at the door? Someone poped their head in, and I heard "There already sleeping" Well it must have been close to 11:00 and after the past 24 hours, this is a most reasonalbe finding. Anyway, a few moments later, a second knock at the door, then in came a doctor, I can't remember her name and I didn't recognize her in the dark. But she made the announcement that Carl's line culture has come back positive with Strep I believe. She said that Vancomicin would be added to treat the infection, and that Carl's port could possibly be sacraficed. I told her that we just went through this only weeks ago :( :( :( UGHHHHHH

She was not able to offer any other information, but assured me that we would hear more from the doctors in the morning. She then left, and left me with many thoughts to ponder instead of returning to the sleep I had started to find.

This is my therory, (forget that I said I would not speculate, its almost 2:30am and I am up typing, I have to do something resourseful right???) Ok here is my theory ~ Carl's nodes are trying to fight off this Staph (line infection) He has had this infection brewing, which would explain the low grade temp over the weekend and Sunday night, and the nodes appearing Sunday for the fist time??? Sunday night Carl was in the worst pain (in neck) and had trouble sleeping, he also had some diahrrea Sunday and Monday, and a mild skin rash (thought to be medicine related?) in the clinic on Monday. Possibly all of these symptoms could point to this Strep infection??? His nodes do look smaller, possibly since he has started the antibiotic??? His neck is less tender as well. Now in my Therory (I cant spell right now) It makes more sense to me that Carl's enlarged nodes, are due to this Strep infection, since this all came on about the same time???? Than the possibility of the enlarged nodes being a bright new spot for NB to set up camp!!!! I like my Therory better than the other!!!!! I think it just sounds like it makes more sense!!!!!

This is my Prayer ~ That the antibiotics between now and Friday morning will kick butt on this infection!!!! (It will not be totally clear and we may spend a week or more in the hospital, and we may need to pull a just put in brand new line in the process) Buttt the suspicious nodes will be completely gone, as they were the result of this stupid infection in the first place!!!!!!!

These are my thoughts, and this is my Prayer!!!!!! I am thinking Positive about this situation, and invite all of you to join me in this POSITVE ENERGY!!!!! Send lots of it to Carl so that Surgery will be a breeze on Friday morning!!!!!! Prayer and Positive Energy!!!!!! We can do it!!!!!!

Ok I had better try to get to sleep now :0) I woke Tom up over at the Donald House about an hour ago, to share my Thoughts with him :0) He didn't mind too much, I guess that is Love!!!!

Thank you again for helping us stay strong, we could not do it without you!!!!

Love

Kelly
***********************************************************



Good Evening to all!!

We are back from our appointments at the clinic, and Carl is hooked up getting his evening antibiotic drip.

The PET scan showed uptake in mulitple nodes in Carl's neck. The good news and strange part of this is that all of his other areas of relapse from before are gone. If the nodes did not show uptake on the scan, then I guess we would be feeling very Happy right now. The fact that they did, is disapointing. We feel it is very strange that the nodes would all of a sudden (just days ago) start filling up with NB? when all of his other areas have been clearing, and his bone marrow was clear on the latest biopsies? What is so troubling is that NB can do most anything, and nothing is predictable. We were assured by both our Oncologist, and the surgeon that this still could be just a flukey infection or something, that it is possible to uptake just like NB would. And it is possible that this will not be positive for NB. It appears to be NB on the scan, however nothing can be confirmed positive until a biopsy is performed. The surgery nurse told us of a case just last week where they were convinced it was cancer in the nodes, and when they went in and looked, it was actually not, but an infection, so this is very possible for Carl too.

I will not try to speculate any more, Tom and I have talked about this til we were blue in the face, and the fact is that we will not know for sure, until a biopsy is done. The surgeon said that they will know within fifteen minutes if this is NB or not. They will run multiple pathology tests on the biopsys that are taken. If this is positive I have requested that we check for N-MYC gene amplification. This is a test that is usually performed at diagnosis, to determine if the NB is amplified or not, and Carl's has never been tested. If NB is positive with N-MYC then it has made over 200 copies of itself and thus is more difficult to stop. It is just a little piece of helpful information to consider for treatments. Not all stage 4 NB is amplified, this is something I have always been curious about with Carl's NB.

Surgery will not happen until Friday morning. So we will have an extra day to Pray. Please join us in Prayer for Carl's surgery to be sucessful, and for the nodes to be clear of NB. Please Pray very hard for this Miracle!!!! We know that God performs Miracles every day, and we have seen his work in Carl before!!!

Thank you all for checking in and for all of your Love and concern!!! Mostly Thank you for your POWERFUL PRAYERS!!!!!

Carl has an actual handprint with a Beautiful Prayer given to me by a Dear friend Sara. If you would like to view this, or print out a copy to hang on your refrigerator to Pray for Carl, just go to the link above "Carl's Zone"

All our Love to Every one of you!!!

Kelly & Tom
& Family
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Thank you Everyone for all of your Prayer that is lifting Carl up, and bringing us peace and comfort!!!

Carl's PET scan went well, we took an ambulance over to Methodist, and then back again. He slept through the prep injection, and while he was supposed to stay still, so that was a Blessing. Carl's temperature has been stable, he has not needed tylenol since his last dose at 1:00am. He is getting one antibiotic every eight hours for 48 hours to rule out a line infection. We were even allowed out on a pass for this afternoon, so we got out and walked over to McDonalds for lunch:) Carl's favorite (chicken nuggets)!!

We had appointments previously set up to meet with Dr. Anderson at the clinic at 2:45pm today, to discuss the PET scan results, and then with Dr. Moir for a surgery consult to discuss doing the biopsies tomorrow. (Lympth node, and repeat bone marrows) So we decided to keep those appointments and just go over to the clinic this afternoon. So we will leave soon to catch a shuttle over to the Gonda Bld.

Carl is feeling Great, in fact he is down the hall right now socializing with the nurses, or whoever is walking by:) He was lucky that Julie one of the sweet child life gals found him his little tractor this morning so he can "Zoom around" the halls of 3rd floor again :0) He really is feeling well, and the swelling of his neck seems so much better!!!! Praise the Lord!!!! We are feeling good ourselves, and feel ever so confident that this will turn out to be nothing serious. We owe all of this to all of the Prayer that has been happening!!!!!! THANK YOU PRAYER WARRIORS!!!!!

We should have something solid to report after we are done at the clinic today!!! We will update again soon!!!!

Thank you so much for keeping your Faith strong for us, and for all of your encouragement when we have been down. It has surly lifted our Spirits!!!! And the fact that it is such a Beautiful warm sunny day, has made us Smile :0)

We Love You All!!!!!!!!!

Kelly & Tom
& Carl


Wednesday, March 24, 2004 0:04 AM CST

An update from St. Mary's Hospital

Room ~ 3-149

Phone no ~ 507-287-4642

Carl spiked a fever this evening, about 101.5 we brought him in to the ER about 9:30pm. He was checked, and an antibiotic started. Shortly after we were taken up to his room, and as we were waiting for the Ibuprofen order to be sent up from pharmacy, he had a Febrile seizure. It wasn't even ten minutes after I mentioned to the nurse that he has a history of Febrile seizures, that he went in to one. It will never get any easier to witness this happening.

He is now sleeping peacefully, but still has a high fever, we are waiting for the Ibuprofen to kick in. A dose of Tylenol is waiting, and he will be able to get that within a half an hour. He has a monitor on to catch any jerking movements during the night, to awaken us in case of another seizure. And his bed is made up with padded side rails for protection. We are Thankful for our very thourough nurse, she is one of the first nurses we had when Carl was first diagnosed, and he began his first round of chemo.

What is going on with Carl is still a puzzle, but I am certainly wondering if the fever is related to the swollen lympth node, and if this is some sort of an infection or virus that has invaded his little body. We are not sure what we will now find out tomorrow, since his PET scan will be cancelled in the morning. He will need to stay on the antibiotics until his fever subsides. The doctor on service tonight already mentioned starting a second antibiotic since Carl is still Febrile. Cultures of his line were taken in the ER, but usually that takes almost 24 hours for any results.

We will update in the morning after we know more about the situation. Please keep the Prayers coming strong, we are still Praying that this is not NB related, but something that will easily be resolved so that Carl can continue his current treatment plan.

Thank you for all of your Love and Support!!

The nurse just popped in and said that they are going to try to keep his PET scan appt. at Methodist Hosp. in the morning. It is scheduled for 6:00am. If he is not running a temp, this will go on as planned. He will be taken by ambulance over to Methodist for the test. We will certainly update with anything we find out tomorrow.

Love & Prayers

Kelly & Tom


Tuesday, March 23, 2004 11:21 AM CST

Good Morning, well almost noon :0)

Thanks for all of your kind, uplifting words and Prayers for Carl and our family!!

I phoned the clinic this morning to see if we could get any results from yesterdays blood work, or the CT scan, but we are still waiting for a call back.

We will need to leave soon to bring Sam to Mankato to meet Auntie Sheila so she can get him back home for school tomorrow. Thanks to everyone at home for taking care of everything for us once again, we appreciate all of your support, and it surly helps ease our minds while we are here with so many other things on our minds right now! We Love you all and can't tell you how Greatful we are to all of you for everything!!!!

Carl is feeling much better today, we even think the swelling in his neck seems smaller? He doesn't complain as much about it hurting, and he is running the halls here at the Donald House like nothing is wrong with him. They are trying to get each second of play in before they will need to say goodbye for a few days.

Thanks again everyone!!! We Love you all, and we will certainly update if we are able to with any news we find out today. Otherwise we are scheduled for a PET scan a 6:00am on Wednesday morning, and then we meet with our Oncologist in the afternoon.

Love & Prayers to all

Kelly & Tom
& Family



Sunday, March 21, 2004 6:15 AM CST

Thank you for checking in, and Thank you for keeping Carl in your Prayers as always!

Chemo is on hold this week, until we figure out what is going on with Carl and this lympth node situation. He had CT scans from head to liver today, and we will be doing urine test, vma/hvma to check for elevation, which would mean tumor present, as NB gives off a hormone that is detected in the urine. He will have a PET scan on Wednesday, and if need be a biopsy will be done on Thursday, with repeated bone marrow biopsies.

If this is NB related, then we will need to decide where to go from here, as this would mean the chemo that Carl has been doing is not working the way we thought. If this is an infection of some sort, then we will need to wait until this clears up to begin chemo. We are sitting in the unknowns for right now, but hopefully we will have some answers soon.

We did discuss changing treatments, and the Mini-Allo-transplant option. We still are not certain what we will be doing, probably staying on this same chemo regimend for awhile. The Mini-Allo-transplant is not a favorable choice of our Doctor, so we will explore other options. Everything will first depend on the outcome of these tests in the next few days.

Please keep the Prayers coming strong, we are feeling depressed and helpless. We just need to trust that God is working a plan here, just like we have always believed, and that the answers will come from above.

Thank you for all of your unending support!!

Love & Prayers

Kelly & Tom
& Family




Kelly & Tom
****************************************************************


Good Morning from Rochester!!

We are in the Ronald McDonald House!!

Getting ready to head over to the clinic. Carl is not feeling well. He has a lympth node in his neck that is very swollen and painful, and he has running a temp since last night. We are hoping and praying that this is nothing serious, it just came on kind of fast??

We will update later today, please keep Carl in your Powerful Prayers that he is feeling better soon.

Thanks and Love to all

Kelly & Tom
& Family
************************************************************



Good Morning Family & Friends!!!!

We are very Proud to announce that Brayn with his team the Humboldt Hawks took 5th place yesterday at the State Adapted Floor Hockey Tournament!!! We enjoyed the games, and Bryan was very glad everyone that came, made the trip to watch him play!!!! Thanks to Auntie Sheila, the girls, Auntie Janet & Grandma Phyllis for being there!!!! We will never forget this day, it was Great!!!

I added new Photo's of yesterday to the Zeocast!!! Enjoy!!!

Today Tom and I will be heading to Rochester with Carl. We will meet with Carl's Oncologist tomorrow morning and discuss Carl's treatment plans. We are thinking he will probably have a same round of chemo this week, so nothing will change just yet. We are bringing Sam with us, and he will come back with Tom monday afternoon. Tom and Sam are the two best bets for a bone marrow match, so we will try to get their blood work started for typing, for a possible future transplant. We read that our friends Cheryl & Zane will be heading to Rochester today too, and Kala will be there on Tuesday!!! We will be Happy to see some familiar faces again!!! It has been over a year since we saw Zane so we are looking forward to seeing them again!!!

Please keep Carl in your Prayers as he starts another week of treatment, and that our plans for future treatments comes together in God's hands.

Please say some extra Prayers for our friends also battling NB and other forms of cancer or other illness.

Zane is having tests/scans this week, Pray for clean, and clear results. ZANE'S PAGE

Kala is have BMA'S & getting ready for an upcoming bone marrow transplant. KALA'S PAGE

Have a Beautiful Sunday in the Lord

Love & Prayers

Kelly & Tom
& Family


Thursday, March 18, 2004 8:59 AM CST

Good Morning!!! A quick change, Bryan's first game will be at 9:00am they did loose last night, but will be coming back strong today!!!! Gotta Go, will update later!!!!

Have a Great Day!!!!

Kelly
***************************************************************

Happy Friday everyone!!!!!

A quick update ~ Bryan will be playing in the Adapted Floor Hockey State Tournament tonight and tomorrow morning. They play at the Stillwater Highschool. Times are tonight at 6:30 and Saturday morning 10:00. There will be one game tonight, and two games tomorrow!!!

We will not make it to the game tonight, but will be coming in the morning, and bringing a huge cheering section. Auntie Sheila, Sarah, Katherine, Grandma Phyllis, Auntie Janet, and of course Sydney, Sam, Carl and Tom & I will be YELLING for the Humboldt Hawks!!!!!!

GO HAWKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Have a Great day :0)

Love & Prayers
Kelly
************************************************************


Good Morning to all our dear family & friends!!!

We had a nice St. Patrick's Day here at home!!! I painted the boys cheek with a green Shamrock :0) They enjoyed showing some Irish Spirt, and looking at their faces in the mirror many times during the day:) (Auntie Jill ~ they would have Loved to be full of tatoo's with Nickie) I used to send Bryan to school every year with a green Shamrock on his cheek:) He will remember and probably smile when he reads this :0) I explained to Sam that his Great, Great, Great Grandfather Greer was actually born in Ireland!! He seemed pretty impressed that he is actually a part Irish ~ for real!!!

Carl continues to feel good, and he is still full of energy!!! We Thank the Lord many times a day for letting Carl live a sort of "Normal" life at home. Normal meaning free from shots, transfusions, pain medication. We are so very Lucky, and beyond words we are so very Thankful to have him here with us and to see him playing happily without pain or fatigue. All to often our children battling NB especially a relapse do not enjoy life the way Carl has been so Blessed. Please keep the Prayers coming strong that Carl will enjoy many, many Happy days.

This morning Tom and I opened our emails, and before long we were both in tears as we read another Mom's post that her precious baby has earned her Angel Wings. We have been reading about Cierra for some time, with all of her ups and downs. There were times when her treatments were working, then it would turn the other direction and start to get worse. She is now pain free, and in Jesus Loving Arms. CIERRA'S PAGE

Thank you for stopping by, may you have a Beautiful day in the Lord.

This piece was posted on our parents group list awhile back, and this morning when I was visiting Cierra's page, I saw it again, and thought I would share this with you ~

The Strength of an Egg by Juliet Freitag


An egg has a polished, smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be so smooth or solid.
Most children, at some point, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an ever slightly different angel, will break. The contents, once so neatly concealed, will come spilling out. The no longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength.
A rock, on the other hand, is solid all the way through. To break it is almost impossible. If you suceed you will find that there is nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. Parents of kids with cancer are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell from being shattered. "Balancing an egg" while running a household, going for doctors' visits and hospital stays, and holding on to the very constant unraveling ties of your sanity can be very tricky, indeed.
Ocasionally, the angle will be off and the shell will break, shattering hope and all the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of kids with cancer will pick themselves up and put themselves back together again!


God Bless You All

Kelly & Tom
& Family


Monday, March 15, 2004 9:49 PM CST

HAPPY ST. PATRICKS DAY !!!!

We are expecting a quiet day at home today!!!

We will always remember St. Patricks Day of 2003. Carl was in the Hospital in NYC, having his stem cell transplant. We had a very nice visit from Cousin's Keith & Justin Hauck :0) They brought Carl a little "Boots" from Dora the Explorer:) They took pictures of Carl and his new Boots guy:) Then later that evening, we got to listen to a parade of Bagpipes coming down the halls at the Hospital. Carl could not leave his isolation room, so we put him up on a chair to watch out the window:) It is so hard to believe a year has passed by so quickly.

It is sunny here at home, an inch of snow fell last night, but will not last long. Sam is up and dressed in green clothes that he chose last night:) Carl is still sweetly sleeping... But will soon be ready for another day of adventure with Sam:)

Have a Great Day everyone!!!!

Love & Smiles :0)

Kelly & Tom
& Family
*************************************************************


Good Evening to everyone!!!

We hope you had a Great Monday!!!

I have just been checking in on some of our friends and would like to ask for some Prayer support for a couple of them. Sophia is starting her chemo, and could use some Prayers that she get through this first round without a hitch!! Her site is SOPHIA'S PAGE

And for our little friend Morgan. She will be having scans again soon. Her site is MORGAN'S PAGE

Also our buddy Zane will be returning to Rochester for tests/scans soon. His site is ZANE'S PAGE

We had a busy day running errands, and visiting Grandma and Grandpa Greer. Carl also had his blood drawn at the Hospital to check his counts. He has always recovered from chemo, without needing GMCSF shots, or transfusions! And by the energy he keeps up, I am certain there is nothing to worry about this time either!! We will be heading back to Rochester again ourselves on Monday the 22nd. We will talk about Carl's continued treatment plan. We are so Happy that his treatments so far have been so good for him with hardly any side effects!! It almost seems to good to be true! Gods hands are certainly working in Carl's life!!

Thank you all for stopping by, and for all of your Prayers that have lifted us up for so long. Please keep all of our friends battling NB and other cancer, and other illness in your Prayers. May God Bless us all

You will keep in perfect peace him whose mind is
steadfast, because he trusts in you. Trust in the Lord
forever, for the LORD, theLORD, is the Rock eternal.
Isaiah 26:3-4

Love & Happiness

Kelly & Tom
& Family


Sunday, March 14, 2004 10:51 AM CST

Hello to everyone this Sunday!!!

Thank you everyone for stopping by and all of those signing Carl's guestbook!!! We enjoy reading your notes, and we Love to know just who is visiting Carl's site:) We were so Happy to read an entrie from the Royal family from Wa. Very Special folks that we met, and spent time with at the Rochester "Donald House" and we missed soo much!!! It was Great to hear from you, we are so Thrilled to see their names out there in Carl's guestbook!!! It really does make our day to hear from all of you too!!!! We think about all of you, and we Love to know how you are doing as well!!! Thank you for all of your continued Love and Support!!!! God Bless all of you!!!

We are having a windy day here on the farm. The boys just came in from riding their Gator, they have got their tractors out instead, and are resorting to playing inside where it is much warmer:) We received a bunch of pictures from cousins Ann & Keith Hauck in NY. Ann emailed some photos of the 1989 Wolter/Robinson reunion, and some earlier farm memories. Tom and I have had a ball looking at all of them:) Ann was inspired, after seeing the baby calf pictures with the kids that we recently added:) She found some adorable pictures of her boys bottle feeding calves out at Uncle Denny's. I told her that the calf huts are the same ones from Denny's, and the bottles look the same too:) She also sent many other pictures that are such a treasure to have. We are putting them all on a cd and will bring it to Grandma & Grandpa Robinson's tonight when we go down to Morton for supper!!! To all of the Robinson's that will not be there, we will share them with you another time:) I think I will add three of them in the photo section, If anyone would like to check them out!!!

Thanks Ann for all of your hard work sending all of these Great Photos!!!!!

Brayn is getting ready to play in the State Tournament next Friday and Saturday. He is playing Adapted Floor Hockey!!! The games will be a the Stillwater High School. I will check, and add the times later. He is all pumped up and ready to kick some butt!!! It is so fun to see him and all of his team get so excited and to Play their hearts out!!! We are Happy that we will be home and able to go to Brayn's games for this Tournament!!! These are those moments that our children will always remember, and realize that these times are just as important to us as they are to them!!!

Wishes to all for a Beautiful Day in the Lord+

Now for a little while you may have had to suffer
grief in all kinds of trials. These have come so
that your faith-of greater worth than gold, which
perishes even though refined by fire-may be proved
genuine and may result in praise, glory and honor
when Jesus Christ is revealed. Though you have not
seen him; and even though you do not see him now,
you believe in him and are filled with inexpressible
and glorious joy, for you are receiving the goal of
your fiath, the salvation of your souls.
1 Peter 1:6-9

Love & Prayers

Kelly & Tom
& Family


Thursday, March 11, 2004 11:45 AM CST

Good afternoon everyone!!!

If you have not already, be sure to check out the new photo's on the Zeocast. Carl went to a livestock auction yesterday with Daddy, Uncle John & Uncle Chuck:) They came home with two little baby bottle calves!! Carl has been hounding me all morning to go out and feed the babies again. He will have to wait for a few more hours yet!

Today is March 11th, a day that holds bittersweet emotion and memory for Tom and I. One year ago today was Carl's stem cell transplant in NY at Memorial Hospital, MSKCC. If you followed Carl's journey back then, you know all of what I am talking about, where this journey has taken us. And now were we have been led, remains to be seen. Had Carl still been in remission, I guess this day would be a Celebration, a sort of first birthday of a new life. But since the cancer took over, and things went wrong, we are not feeling those Joyous feelings that we may have. Instead we are feeling the hope a new beginning, in that God has led us down a different path. The way is still unknown, but we are certain that God has a plan for us. It just did'nt turn out the way we thought it would, looking back a year ago. One thing we have learned, is to not dwell on the past, as we can't change any of that. But to look ahead, and learn to take one day at a time, knowing that God is working in our lives and has yet to reveal his perfect plan.

I will share with you, a beautiful speach written by our Sweet niece Kiri McVenes. Kiri gave this speach at school, and sent us a copy:) She did a Wonderful job, and I felt this was definitely noteworthy. Today is a perfect day to share this with you, as we reflect on this day one year ago, and as we look to the future with God's plan for Carl.

Written by Kiri McVenes

One stem Cell transplant, six rounds of Chemotherapy, 14 rounds of Radiation, 5 rounds of Antibody shots, and five rounds of Accutane. Can you imagine going through that or having your son go through all of that by the time he is 4 not to mention all the tests and operations to put in and take out all kinds of ports and tubes? Tom, Kelly and Carl Robinson can. Tom is my uncle, Kelly is my aunt, and Carl is my cousin and this is a tribute to them about their life the past four years.

Carl Thomas Robinson was born on December 28th 1999. He is Kelly's fourth child and Tom's second. Carl is named after his father Thomas Carl Robinson. There are also three other family members yet to be introduced and they are Big Brother Bryan who is 16, Big Sister Sydney who is 10, and Big Brother Sam who is five. They had a very happy family.

Until August 18, 2002 changed all of that because Carl was diagnosed with Stage four Neuroblastoma, which is a very rare, high risk Childhood Cancer. It was that day that Kelly and Tom received the news that, their little boy had a 30% chance of survival. That news shattered everyone's heart but Tom and Kelly were determined to beat the odds so they went ahead and did everything they could and on December 23, 2002, they removed the tumor. So the new motto became "Cancer Free in 2003"

The moto was true and we used it this summer as the Robinson family does the Redwood County Relay for Life and Redwood does a neat thing were every team has a different theme so our teams name was "Carl's Commando's Fighting for a Cure!" We had everthing from army tents to army cots to an actual army fort named "Fort Remission". Since there are about 50 Robinson relatives, we made a pretty good army to fight this terrible monster called cancer. We also had people come of Carl's friends he had met while in Rochester receiving treatments. The survivor lap that takes place was pretty emotional for everyone. The summer and the fall were completed with their trips out to New York for the Antibody shots. Just as everyone was adapting to their new life it changed.

December 1, 2003 Tom and Kelly were told that Carl had relapsed and he now had a 10% chance of survival, they did not know what to do but they knew they had to do something. They weren't going to give in so they did some researching and they decided to go to Philadelphia and do a treatment out there but there plans changed when it seemed the cancer had responded to the Chemotherapy they had been giving Carl to make sure the Cancer didn't progress at all. They have now opted to do a Chemotherapy treatment offered at the Rochester Mayo Clinic.

I believe That Tom and Kelly have handled this all very well. If you were to look at Carl today you couldn't tell anything was wrong with him except for the fact that he has a little bald head. They have a web page and the address is http://caringbridge.org/mn/carcar.

You guys are the strongest people I know and I Love you Uncle Tom, Auntie Kelly and Car Car.


Thank You Kiri for such a Great Tribute to our family, you know all of you are included in this!!! We feel that all of our entire family and friends that have given us so much support over the past year and a half, are the reason we have had so much strength!!!!

I have some new news about Carl's next treatment plan. I was talking to Diane, Sophia's mom last night, and we discussed Sophia's plan now that she is also fighting a relapse. One option that Diane is considering, is to first get Sophia into remission again, then to do a Mini-Allogeneic transplant. This sounds like a very interesting and reasonable plan, since the toxitity of the Mini transplant is less than a full transplant. If we do this with Carl, we would have to see if Sam or Tom are a match for Carl, as we would not use his own stem cells, but a donors cells. We are consulting with all of our Doctors about this option. I am thinking this would be more desireable to try, versus waiting for a second relapse and then doing the MIBG treatment at Chop??? Still so many questions and answers to find, but we are excited about this possibility, and as Diane and I talked about last night, we both have a very good feeling about this option.

Wishes to all of you for a Great Day!!!!

Thank you for keeping those Prayers coming strong, we can feel their power!!!! Please keep in mind all of our friends battling NB and other cancers. Little Sophia's site is www.caringbridge.org/ma/sophiamarie

Lots of Love & Prayers

Kelly & Tom
& Family


Wednesday, March 10, 2004 10:01 AM CST

Extra Credit

If illness comes early
Life takes new form
Aware of mortality
Change from the norm

I've experienced 80
At 40 years old
Cancer, the courier.
Risks ~ they were bold.

Precious life threatened
I sensed a new cause
To listen more closely
To life's silent pause

So much to absorb!
Life moves on so quick!
Why must we suffer?
Why be so sick?

Now we must ponder
Our visit on earth ~
The journey beginning
The day of our birth

I will make the best
Of each brand new day
Even the ones
That "don't go my way"...

For every chance
That I have to get it
While remaining on earth
Must be extra credit!


From "When you Get it" by Leslie Droll

Carl went with Daddy & Uncle John, & Uncle Chuck to an auction. They came home with two little bottle Calves

Good morning to everyone!!!

We are enjoying our week at home, but it almost feels strange to not be going to the clinic or hospital, sometimes I'm not quite sure what to do. The boys Loved being together yesterday (Sam is in school today) they played outside in the 50ish degree sunshine:) We tried to fly a kite, but couldn't get it up (I must be out of practice) then the boys got their bikes out of the shed, next we found them climbing a tree together:) How truly wonderful to share a normal day of childhood!!!

Wishing you all a Beautiful day in the Lord.

Please keep all of our friends fighting this nasty disease in your Prayers. Remember Sophia, who has recently relapsed. Her site is www.caringbridge.org/ma/sophiamarie

Thank you for keeping Carl in your Prayers, he is a gift from God, and He shows us His Love every day!

Love & Prayers

Kelly & Tom
& Family


Sunday, March 7, 2004 9:33 PM CST

Hello to all our Great Family & Friends

Carl and I got home yesterday about 4:00pm, and we were so Excited to see everyone, and they were all Happy to see us too!!!

We enjoyed our week at the Donald House so much!!! We were Blessed to meet some Wonderful new friends, and Carl had a ball with Everyone!!! I added some new Pictures that we took at the end of the week. I could kick myself for not getting the camera out earlier, but I did get some cute ones, and I think you will enjoy them!!!

To look at pictures click on ~ The postcard that comes through the door, the stamp on the postcard, the little phone booth on the postcard, the billboard, the pictures inside the room.

We Loved our time with the Fischers, and were so Happy to get to see Susanna, Juan Antonio, Alba and Jorge a couple of times!!! We met some new friends from Iowa, Illinois, and Tennesee!!! Carl has two new Buddies, Jordan & Justin:) We miss all of you guys down there, and hope your next week goes well for all of you!!! Maybe we will get to see some of you on our next trip back in a couple of weeks:) It was a pleasure getting to know all of you, it just felt like we were all family there this past week, it was Great!!!

Things are going well here, we had a nice Sunday, and we are all ready to start our new week!! Carl is feeling Great, we will go to the Redwood Hospital later in the week, for blood draws to check on his counts, otherwise he shows no signs of any distress from the chemo, and we expect his counts to be good as well. Carl's counts have always remained stable since starting this Irinotecan schedule. We are very lucky that this treatment has been going so good, without any complications or side effects. We just feel so very Blessed with Carl's response since relapse, we give all Glory to God for all that we have witnessed with Carl's progress!!!

Thank you everyone for all of your Love and Support since our Journey began. We have learned so much from this journey. We realized how much we are all cared about, and Loved. We have learned how to Pray, and how very Blessed we feel, to see the Glory of God working in our lives and others. We have met so many Wonderful people, and formed bonds that will last to eternity. Thank you so much for sharing our lives. Through His perfect plan, God has chosen us, for his purpose. God Bless you all

Please keep Sophia in your Prayers, she and Carl were both in Transplant last year at this very same time. Now they are both fighting a relapse together. Her site is www.caringbridge.org/ma/sophiamarie

Please remember all of our friends battling cancer and other illness in your Prayers.

Love & Prayers

Kelly & Tom
& Family


Thursday, March 4, 2004 9:33 AM CST

Good Morning to everyone!!!!!

Carl's Bone Marrow results are in!!!!!

They are Negative!!!!! PRAISE THE LORD!!!!

No Neuroblastoma cells were found in the marrow sampled! What this means is, from the sample which they fished out, there were no cells sighted. This does not necessarily mean that he is totally clear, because NB cells tend to congergate in clumps, and had we took many more samples, it is possible that cells would have been detected. But this is the Best Possible Results we could have received right now!!!! And we will take it!!!! This is Good News!!!!!

Thank You Prayer Warriors for all of your Steady Powerful Prayers for Carl!!!!! We are sooo Blessed, and we will Celebrate this Good News we have right now!!!!!!! We don't know what tomorrow will bring, but today we are So HAPPY!!! We will Celebrate and give Thanks to the Lord for he is soo Good!!! God Bless you all

We did get to visit with our friends from Spain last night!!! It was so wonderful to see them and have them here with us again!!! After the house supper, the staff here at the Donald House showed a video that was made of the Rochester Ronald McDonald House:) It was so fun to watch, it included many children that we have seen over the past year and a half that have stayed here:) Jorge and his sister Alba, with thier Dad in the kitchen, was one of the pieces of the footage:) We all laughed when we saw them on the video, it was so neat to watch this, and have them here to see it too!!! Later in the evening, I was sitting at the computer in the computer lab, and Carl came running in to tell me "Eric Fischer's Mom is here" So to our delight, they were here, and they have a room right across the hall from us in the new section on second floor:) It is Sooo good to see them, and have them here with us too!!! We visited for quite awhile, then we decided we had better get all the kids to bed as it was getting pretty late. All of the Fischer family are here, so Carl will have lots of buddies to play with!!!

I have a very urgent Prayer request to ask of all of you, our Dear sweet little friend Danniel Hammer has been having some headaches, and Sara & Vic are worried about the start of a tumor or relapse. Please Pray very hard for Daniel that this is nothing and that he is feeling better very soon. Sara has held Carl and our family up in the Strongest Prayer daily, and we have become very spiritually close with all that we have endured together with our little boys. The Hammer's are very Special to us. Please send up some of your Powerful Prayers for Daniel and his family. DANIEL'S PAGE

Please remember in Prayer, all of our friends everywhere that are also fighting Cancer and other illness. This week at Mayo, Kala, Eric, Jorge (his tests are clear), Mia (Holly & Mia are coming Friday) We have been Blessed with so many wonderful friends throughout Carl's journey!!!

Have a Beautiful day in the Lord

Love & Prayers

Kelly & Carl


Wednesday, March 3, 2004 12:48 AM CST

Hello to all our Dear Family & Friends!!!

Happy Birthday today to my Dad, Carl's Grandpa Greer!!!

Thank you for all the POWERFUL PRAYERS coming our way, we feel every one of them, we feel so Wonderful today!!!!

We have been Praying hard here, and I know that we have so many more coming through for Carl's Complete Healing!!! Carl and I made a stop at the Beautiful little St. Mary's Chapel yesterday while we were waiting to be called in to surgery. It is such a pleasure to be there, the Lords Peace and comfort are always present within. The Beautiful Statue of our Mother Mary holding Jesus up in the center of the Alter is always so Amazing to me.

Carl's surgery was delayed until about 2:45pm, so we had alot of time to spend before the procedures. After surgery which went perfect, no complications, the nurse brought Carl an adorable stuffed Moose. It was kind of Ironic, as we were given a little stuffed "Miracle Moose" the last time we were at St. Mary's, by our chaplin friend Warren:) So here comes the recovery nurse with a "BIG" moose:) to go along with our little "Miracle Moose" that we made sure we carried with us yesterday!!! (The nurse didn't know about our little Moose til after she presented Carl with his Big one:) I wondered if this was a sign that our Prayers will be fulfilled with Carl's Big Miracle??? We are so filled with a Joyful Spirit, Carl is feeling Great and never ceases to Amaze me with his Energy!!!

After surgery he was admitted for the night, to get his first dose of chemo, and just to keep an eye on him with pain and everything. The nurse thought she should get a wheel chair to bring him to the play room:) Well knowing Carl, he was sliding out of bed and running to the door before we could stop him!!! He made his way to the play room and was delighted to find an available little tykes tractor to ride;) So off he went and we could hardly get him off of it the rest of the night. We played bingo later, but Carl handed me his card to watch while he took off to "Zoom around a little" as he put's it:)

Carl's new Port-a-cath is working just fine. It is in a new spot, on the right side now, in his rib cage area. The nurses kept referring to it as his "PAC" like- (pack) and then I realized that's his port-a-cath!!! Duuhhh!!! We are due back at St. Mary's Peds Infusion Therapy Center at 2:00pm for Carl's second dose of chemo.

We are planning on attending the Chapel's Anointing of the Sick service at 4:30 tonight. Then the house is having a supper at 6:00pm We hope our friends from Spain will be back so that we can sit and visit with them!!! We got to see them briefly yesterday morning again before we left for the Hospital. Our sweetie Kala is still here:) She hopefully will get to go home tomorrow. And we are still waiting to see Eric Fischer (I think tomorrow!!)

Please keep all of our friends everywhere in your Prayers.

Thank You everyone for all of your Positive Energy, Prayers, Love and Support!!!! We feel all of it, and we Love you all so much!!!!

Have a Great Evening and we will update soon!!!

Love & Prayers

Kelly & Carl


Tuesday, March 2, 2004 8:13 AM CST

Good Moring to everyone!!!!

Room No 208
Phone No 507-252-2178
Cell Phone 507-640-1714

We are at the Donald House:) And enjoying the comforts of our home away from home:) Yesterday Morning we saw our friends from Spain downstairs here at the house!!! Jorge looks so Wonderful with his beautiful hair!!! The whole family looks so Good, it was so Great to see them!!! We are hoping to get together more during this week and visit:) Susana said they are staying with friends here in town, but I'm sure we will get to spend more time with them!!!

Today is surgery day. Carl and I will head over to the Hospital soon, he is scheduled to report at 9:30am. We met with the surgeon yesterday, so we are all set for his procedures. Carl will have his port placed, then Bone Marrows, and his Mic-Key button will be changed, as his old one is starting to show wear. Please send lots of positive energy this way, and Pray very hard for Carl's Bone Marrow to be clear of Neuroblastoma cells!!! This would be nothing short of a miracle if his Bone Marrow shows clear!!! He has been feeling so Great, and Looks so good, and has not complained of any leg pain for a long time!!! Carl has even gained 1 kilo, he has went from 33 to 34.5 pounds since we were here a couple of weeks ago!!! GO CARL GO!!!!!!!!!

We even brought his little bike (That Auntie Jill bought him last year) with us, and he has been riding the halls here at the Donald House just like old times :0) He wanted to bring it to the clinic yesterday, and today he was begging to bring it to the Hospital. I told him that it is best if he wait till we get back to ride. He then said, I won't run over anyone there:0) What a Wild kid!!!!

We also got to see Kala, who is still here and waiting for the ok to go back home. Please keep Kala, Jorge, Eric (Eric is coming to Rochester in a couple days!) all in your Prayers this week as they have their doctors appts. It kind of feels like old home week here:0)

Well I suppose I better get going, I think Carl is in the office bugging the girls:0) Hopefully he is not eating anything, as he was not supposed to after midnight!!!

I will update soon!!!

Thank you for all of your Powerful Prayers, and Support Everyone!!!!!

We Love you all!!!!!

Love & Prayers

Kelly & Carl


Saturday, February 28, 2004 1:22 PM CST

Good Afternoon this Beautiful Saturday!!!

Wishes to all of you for a Great Weekend!! Tom is outside with the kids putting up a baskeball hoop:) It is so springlike, it feels soo good!!! We are haveing some really nice days, but we hear it may snow again Sunday thru Monday.

As I watch the boys and Sydney outside with their Daddy, it just warms my heart and makes me feel so lucky and very Blessed that we have today!!! It is so very special to know the meaning of not taking one moment for granted. If anything this journey has taught me, it is just that, we are Thankful for each and every day. We know the value of the gift of today. . . of each day that we are given together.

Please Pray for little Jordan Luke, a little boy that relapsed around Thanksgiving time. The same time that Carl also relapsed. Jordan is having some internal bleeding, and will be earning his Angel wings very soon. JORDAN'S PAGE

Please keep Becca in your Prayers, we are trying to send up many Prayers for "Becca's Miracle"

Please keep Carl in your Prayers as he will be having surgery on Monday for his port replacement, and Bone Marrow ASP/biopsies

Please continue to Pray for John Frank, as he is back home and could use some Prayers for strength and continued healing.

Please Pray for all our friends that are battling NB and other Cancer's and other illness.

God Bless You All+


Finally brothers, whatever is true, whatever is noble,
whatever is right, whatever is pure, whatever is lovely, whatever is admirable, if anything is excellent or praisworthy . . . think about such things.
Whatever you have learned or received or heard from me
or seen in me . . put into practice and the God of peace will be with you.
Philipians 4:8-9

Love & Prayers

Kelly & Tom
& Family


Thursday, February 26, 2004 10:29 AM CST

Good Morning Dear Ones!!!

Thank you for visiting us here, for all of your continued support, and constant Love you share!!!

Thank you for keeping the Prayers coming, I don't know what we would do without the strength, we gather from all of your Powerful Prayers.

I have a very urgent Prayer Request today, it is for a little girl named Becca. She is one of our NB Family (I don't think she has a website) He mother Theresa has put out an Urgent Request to get as much Prayer going for Becca as we can. One of the moms is going to coordinate a time when all of us will Pray in unison for this little girl. Becca just got back from a trip to Hawuii with her family. She also has been battling a relapse, and they fear she has taken a turn for the worse. We are all Praying for Becca's Miracle, God is in the business of miracles, and we are Praying very Hard for Becca!!! I will update when we find out this special time of Prayer, in the mean time, Please lift Becca up in Prayer, as the family needs to call on our Great Physician in the sky to heal this little girl.

Carl continues to do very well!!! Yesterday he had some leg pain when he first woke up, and for a little while in to the morning, but then it got better, and he was running and jumping like nothing was ever bothering him:) We had a very busy day yesterday. First Carl and I had dentist appointments. This was the first time Carl has been to a dentist aside from the dentist that looked in his mouth a year ago before his Stem Cell Transplant. Carl was being a little stinker, and would only let the dentist peek in his mouth briefly:( But it appreas that he has a couple of cavities (two lower molars) I guess this is what can happen with chemo, lots of medicine, chewing Accutane all of those rounds:( eating candy like theres no tomorrow, and us letting him, and then not brushing as good as we should have made him!!! So now Carl will be going to a Pediatric Dentist clinic in New Ulm for dental work. I found out yesterday that the gals at this Clinic, know of us, and have been following Carl's Journey:) What a very special connection that is, we will be Happy to meet our friends in New Ulm in a couple of weeks!!!

Then after our dentist appointments, Carl and I had lunch with Sam at school!!! Yesterday they honnored Sam as V.I.K. (Very Important Kid) We made a Beautiful poster with pictures that he picked out from Florida and of our family, that Sam shared with his class:) And he brought treats to celebrate his summer (July) Birthday!!!! He was just beaming when Carl and I walked into the Cafeteria to join him:) It was very priceless, We Loved every minute of it, and we decided we will have to go have lunch with Sam more often!!! We are planning on bringing our dear puppy Pika to visit Sam's classroom on Friday morning, we wanted to do it yesterday but with lunch and everything we thought another day would be better:) Sam is excited for us to be bringing Pika, and we will have to be sure and stop in to see Pika's Puppy-sitter Jenny Bloedow's class:) While we were on vacation in January, Jenny brought Pika to class one whole day:) Jenny's kids just Loved her, and I'm sure they will be Excited to see her too!!!

Carl had his CBC drawn again yesterday, along with a culutre. Which I have not heard any results back yet, so I am Praying they are negative!!! We will return to Mayo on Monday March 1st for a week. According to his schedule, Carl will have labs drawn, then see the Dr. and then a consult with the surgeon for his port replacement. His surgery will probably be on Tuesday, to replace the port, and for Bone Marrow ASP/Biopsies (PRAY, PRAY, PRAY for clear marrow) then he will probably start chemo late on Tuesday or Wednesday depending on when the surgery gets done. Which will take us to eiher Saturday or Sunday, so this will be a full week of appointments. I don't know what the situation is at the "Donald House" we are Hoping again to get in there, but we will not know for sure until Sunday or even Monday when we get to Rochester.

Last night after church (Ash Wednesday) Tom and I went to the late showing of "The Passion of the Christ" playing in Redwood. It was just as Amazing as we have heard. Very graphic, and very sad, I must have cried through most of the movie. I had red, puffy, swollen eyes when we walked out of there :.( I think the hardest part, or the part that I could relate to the most was when Mary, watched and witnessed what was happening to her Son. It was so painful for her to watch her son be beaten so terribly, then to be forced to carry his cross when he could hardly carry himself. In a way I can relate with little Carl and all the suffering he has endured, and all of our innocent children that have been forced to carry such a heavy cross for so long. Nothing as terrible as Christ, but the same in the way of an innocent one having to suffer so. I am glad we were able to see the movie, and it had special meaning for us on Ash Wednesday. It was a good way to start out the Season of Lent. The readings and "The Passion" when heard in church, will be very vivid now after seeing such an Emotional Presentation!!

Thank you for stopping by!!! We appreciate all of your Support, we are glad you continue to come along with us on our journey, we will never feel alone!!!

God Bless all of you+

Love & Prayers

Kelly & Tom
& Family


Monday, February 23, 2004 7:27 PM CST

Good Evening everyone!!!

I am trying to journal again, we will see if this works. I have not heard back from Caringbridge about our journaling problem.

Today Carl had his CBC (Complete blood count) drawn at the hospital. He did very well considering he needed to get a stick in the arm the old fashioned way. He was bothered by the rubber band on his arm, worse than the actual stick itself:) But he was a very big boy, I was Proud of how well he did today:) We will go back again on Wednesday to get another blood draw, and this next one will also include a blood culture. Carl is now done with his oral antibiotics.

We had a very nice weekend here at home!! On Saturday afternoon we met with a couple of sweet girls from "Make A Wish" that came to our home from Waseca. They came with bags for each one of the kids with toys and treats for them to enjoy:) We talked about ideas for a wish for Carl. Back when Carl was first diagnosed, we applied for a wish, but never followed up, or finalized anything. One of the kids popular choices is a Disney Cruise. We tried to give them other ideas and options, but Carl and the rest of the kids keep coming back to the BIG Disney Boat as their favorite idea. It will be pretty hard to Top our Disney World Orlando vacation, but this may be just as fun with all the charactures on board, and the many marine sights and activities offered.

Our friend Eric Fischer and his family went on a Disney Cruise last year for Eric's Make A Wish!!! It sounds like they had a Great time, and got to do lots of things:) Eric attended a Make A Wish Fundraiser last week, and he journaled about his trip on his website. To read about Eric's exciting Make A Wish click here ERIC'S PAGE

We are thinking about later June for Carl's trip, and I think we already have a Pika-sitter all lined up for a week:) Speaking of Pika, Carl and I took her to the Vet today to get her over-due second series of puppy shots. It was very cute to see Carl so concerned about her. He explained to me that she was getting her shots to keep her healthy, "just like me when I get my medicine". I thought that was pretty wise of him to put that all together:) He then told me that he doesn't need to go back to the Doctors anymore, because he is not sick anymore. I felt sad at that moment, and couldn't even give an answer back. It sure would be something to only know doctors once a year for checkups, and animal doctors for puppy shots.

We hope you all have a nice evening!!!

Please keep the prayers coming for John Frank. He is in the Redwood Hospital trying to get better so he can get back home again!!

Please keep all of our dear friends also battling NB and other cancer's, and other illness in your Prayers.

Please remember in Prayer, our friend Stacey Hildebrandt's Grandmother who was recently diagnosed with cancer.

being confident of this, that he who began a
good work in you will carry it on to completion
until the day of Christ Jesus.
-Philippians 1:6

But he said to me, "My grace is sufficient for you,
for my power is made perfect in weakness. "Therefore I
will boast all the more gladly about my weakness, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
-2 Corinthians 12:9-10

Love to Everyone!!!

Kelly & Tom
& Family


Monday, February 23, 2004 6:44 AM CST

Good Morning Dear family & friends!!!

I have tried to update many times over the weekend, but when I get done with my journal and go to review and then add the new journal, about half of the journal is missing, and the the box to "Add Journal" is not there?? Very Strange??? I have emailed to Caringbridge to have this problem addressed, hopefully this will get fixed soon. It does allow you to do a very short message and add it, but something must be wrong, and I wonder if anyone else with Site's are also experiencing this problem???
Since I cannot Journal more than a couple of paragraphs, I will just say that we are all doing well, and Carl is feeling Great!!! He had a Wonderful weekend of playing outside with Sam:) They worked on their snow fort tirelessly:) I will update more after this Caringbridge update problem becomes resolved!!! Have a Great day everyone!!! Please say some extra Prayers for John Frank, he is dealing with a painful skin condition.
Love & Prayers ~ Kelly & Tom & Family


Thursday, February 19, 2004 8:44 PM CST

Good Evening Everyone!!!!

New Photos added in the Zeocast!!!! Enjoy!!!

If you are reading this tomorrow ~ HAPPY FRIDAY!!!!

We are doing Great, the boys are enjoying being home together!!! They have big plans for tomorrow, it is supposed to snow more, and they have new snow shovels they want to put to use making a snow fort:)

We had supper at Grandma & Grandpa Robinson's tonight. Auntie Jeannie made Tator-tot hotdish, and Goulosh!!! It was very good!!! Uncle Dave & Auntie Jeannie are heading back home tomorrow. Please keep them in your Prayers for save travels.

Please send up a few extra Prayers for John Frank. He is having some hip pain lately.

Please keep all our friends battling cancer and other illness in your Prayers too.

God Bless you all+

Love & Prayers

Kelly & Tom
& Family


Tuesday, February 17, 2004 3:45 PM CST

Good Afternoon Everyone!!!!

We are home Yippie!!!!!!

It feels good to be back home, and Carl is Happy to be home with his family too!!!

Carl and I spent the night at the Redwood Hosp. and Carl received 2 of his infusions. Uncle Chuck stayed with Carl so that Tom and I could go to Uncle Dave's fathers (Grandpa Gores) funeral this morning. They were able to leave the hospital, and he actually is able to be out on pass until his next infusion at 6:00pm tonight!! Carl will again spend the night, and can leave after his morning infusion on Wednesday. And then after his pm dose, he will be discharged. Carl will follow this up with oral antibiotics for five more days.

Right now Carl is with Daddy, running some errands around town:) He enjoyed his moring with Uncle Chuck, and even got spoiled with McDonalds for lunch!!! Carl's favorite:) He really eats those chicken nuggets so well!!! We have even started to order him the 6 piece instead of the 4 piece with a Happy meal!!! It will be good when they change from those Lion King toys however:)

Please keep the Gores family in your Prayers, as they are in need of some comfort with the loss of a very special man. I was so very glad that little Carl and I were able to visit Grandpa Carl in St. Mary's last Monday. It was very touching to hear how much he enjoyed our visit, as he told his family about seeing us:) That warmed my heart to know that we really cheered him up. We heard how little Carl crawling up in bed to give Grandpa Carl a kiss, meant so much to him!!! The funeral was very beautiful, to hear father talk about the wonderful person he was, made me wish that we would have met, and got to know him before. But we are so glad that we did brighten one of his days!!

I am going to try to change some pictures, and get the picture of Carl with John Frank posted soon:) Check back for new photos soon!!!

Have a Great Evening everyone!!!

The Twenty-Third Psalm

A Psalm of David:
The Lord is my shepherd; I shall not want.
He makes me to lie down in green pastures,
He leads me beside the still waters.
He restores my soul.
He guides me in straight paths for His Name's sake.
Yea, though I walk through the valley of the shadow
of death,
I will fear no evil
For Thou art with me.
Thy rod and Thy staff, they comfort me.
Thou preparest a table before me in the presence of
my enemies.
Thou anointest my head with oil,
My cup runneth over.
Surly goodness and mercy shall follow me all the
days of my life.
And I shall dwell in the House of the Lord Forever.

Love to all,

Kelly & Tom
& Family


Monday, February 16, 2004 12:10 AM CST

Good Afternoon to everyone!!!

We are Happy to report that we are heading back to Redwood Falls this afternoon!!! Carl is hooked up for his last infusion, then we will admit him to the Redwood Hospital for a couple of days. He will continue to receive antibiotics every six hours. We will be able to leave the Hosp, for a few hours between his doses. On Wednesday Carl will be discharged on an oral antibiotic. We will need to check CBC's and repeat a blood culture after 48 hours of stopping the antibiotic to see if the infection is gone.

We will return to Mayo on March 1st for surgery to replace his port-a-cath. Carl will also have bone marrow aspirates, and biopsies done. After Tom and I did some more discussion about future treatments, we decided to still keep Carl's g-tube intact. I was doing some research this morning on possible future clinical trials, and one of them was an agent that has been tried with Leukemia adults. It comes in a liquid form, and can be mixed with juice. Well Carl is not a big drinker normally, so we re-thought our decision to close his g-tube. It just may come in handy for something we have to get down him, that he will not take orally, and if we close it too soon, we may regret that decision later. So we will keep the g-tube but have his Mic-key button changed to a new one.

We believe Carl will continue on this chemo plan that we are doing for a couple of months before looking into something else. And if he continues to respond well, without any setbacks, we can actually keep him on this for quite some time. There have been children using this chemo for over a year. We think we are so Blessed that Carl has been given this "Gift of Time" and we will use this time to research, and decide the best plan to take next. There are so many new and coming drugs that will be coming out in the months to come, and possibly one of them will be the answer. Or it will be something to also buy us more time until we find that answer.

Thank you all for checking in, and for all of your Love and Support!!!! Thank you for your Prayer Power and for never giving up on us!!!

We Love you all!!!!

Kelly & Tom
& Family


Sunday, February 15, 2004 8:34 PM CST

Hello to all our family and friends!!!

We are doing well here at St. Marys Hospital, just trying to keep up to Carl and Sam as they have been busy driving the halls (on two little tykes tractors) between Carl's antibotic infusions:)

The Dr. thought we would continue this IV antibiotic for a few more days, and then Carl could possibly go home on an oral drug. We asked about getting him transfered to the Redood Falls Hospital, to finish out his schedule. Since we are able to leave the Hospital between infusions, we could actually go home for almost 5 hours and then return for the infusions. We will find out in the morning what the plan will be!!! We are all anxious to get back home:)

The Doctor asked Tom (I was out with Sam getting breakfast)if going home for a couple of days would even be worth it at this point. And Tom made it clear that YES getting back home would make a big difference in our lives, even if it is only a couple of days earlier!!! It didn't sound like it was any work on their end here, so we expect that this should be a reasonable request.

We have had some trouble with the attitude and cooperation from several of the Doctors here on the team, ever since we started dealing with Carl's relapse in December. Not only have we been hearing negative responses to nearly everthing we try to bring up, but we feel that they are not very willing to work with us, and help us with our treatment options for Carl. (Dr. Anderson has been the only one we have felt satisfied with) We feel like we are on our own, and when we ask questions, it is only negative or patronizing responses, rarely hopeful or supportive of our focus (to pursue a cure for Carl). I don't think they realize where we have been, and what we know about the process and nature of this disease. We are fully aware of the statistics we are facing with a relapse, but we are also dealing with "Carl" who is a healthy, energetic, warrior that continues to Amaze us every day!!! We also believe in Miracles, and we have always know that GOD has a very big plan working in Carl and all of our lives. PRAYER IS POWERFUL!!!!!

This morning the Doctor came back in our room, as I has asked to speak with her again about a couple of questions we had. We understand that Carl's port-a-cath will be re-placed again, probably the morning we come back on March 1st for his next chemo. We wanted to have Carl's g-tube removed at this time, as we really want him to be back to as normal a little boy as possible, and we haven't used his Mic-key button for tube feeds for over four months. And I wanted to request that Bone Marrow Aspirates, and Biopsies be done again at this time since he would be sedated for the other two procedures anyway. And it has been three months (November) since BMA'S have been done. Well the response I got from this Doctor was this...
"You want to know???" Well after she left the room, Tom was just fuming!!!!! Yes we want to know!!!!! We want to know if this chemo is working as well on his bone marrow as it is on the tumor load!!! And it is normal, and natural to monitor if a child is responding to the treatments!!! We took her response as "The Bone marrow is going to be packed with NB anyway, why do you want to confirm that!!!" Well we would Love to have his bone marrows come back negative just to prove how well he is really doing on this chemo, and that he is having miraclous response after relapse, just the opposite of what these Doctors are so sure will result. This same Doctor told me before we started this chemo, that Carl would be sick, and would probably require hospital admissions for severe diarreah. Which has not happened!!!
We hope, with the Love and help from the Good Lord above to prove them all wrong!!!! It still comes back to the one word "HOPE" and we refuse to give that up!!!

If we didn't have the one Dr. cooperating and trying to help us, we would be out of here so fast!!! Tom and I have talked about going to the U of M or Mpls Childrens to see if their Onc Dr.s are any more helpful and caring. I told Tom we could meet one that is just great, and then have it turn out that the rest of that team is just as bad as what we have been dealing with here. It is so frustrating to have these feelings and negative support from our Doctors, and even harder to understand how they could not naturally Love this little boy and feel compelled to join our fight of all fights, against all odds!!!

Thank you everyone for all of your faithful Prayers!!!! I would like to ask for specific Prayers, for Carl's upcoming surgery for his port replacement, G-tube removal, and Bone Marrow tests. Please Pray very hard that his bone marrow is showing as much remarkable response to chemo as the tumor has. Lets Pray for another "Big One" for Carl's Marrow to be clear!!! Pray that these treatments will free Carl from all cancer in his little body, and he will be completely healed.

We will update tomorrow after we know what the plan will be for transfering to Redwood Falls.

God Bless+

Love & Prayers

Kelly & Tom
& Family


Friday, February 13, 2004 3:33 PM CST

Happy Valentines Day!!!!!

Carl and Sam are on the Go......

We just got back from the Mayo 1 Hellecopter pad tour, and the boys got to sit in the cab for a picture:)

Uncle Dave & Auntie Jeannie are stopping by on their way through to Morgan today. Grandpa Gores passed away yesterday. Please keep all of the Gores family in your Prayers at this very sad time.

Have a Beautiful day in the Lord

Love & Prayers

Tom & Kelly
& Family

************************************************************

Hello and Happy Friday!!!


Room Number 3-145

Phone Number 507-287-4048

Carl has been admitted to St. Mary's Hospital today. This morning we were called over at the clinic during his chemo, and we received the report of yesterday's blood cultures, and we were surprised that it still is positive after stopping the antibiotics for 48 hours:(

First off, Carl's medi-port was removed, and a regular line put in his hand for the time being. Carl will need to continue IV antibiotics for possibly 7 days:( So here we are again Inpatient with Carl on his little Tykes Tractor:) Tom and Sam are coming down tonight, and we will decide the schedule for the upcoming week. Tom may stay for part of next week, so that I can get home and be with the kids at home. I am so sad we will not be coming home this week end, but I am glad we found out about this infection before we got home, and before Carl started to spike a fever again.

I will update again soon, Carl is saying "LETS GO" he wants to go down to the cafeteria and get some food, as he has has not been able to eat anything all day due to the sedation for the port removal.

Thanks for checking in, and Thank you for keeping the Prayer coming strong!!!!

Lots of Love and Huggs to all!!!

Kelly & Carl


Thursday, February 12, 2004 4:42 PM CST

Hello this Thursday evening!!!

Thank you everybody for checking in, and for all of your loving thoughts and notes:) We Love you all and miss you all too, we are so anxious to get back home, and are ready for lots of Huggs!!! So glad to hear Jen is coming home this weekend:) I wonder if it will be good sledding weather this weekend??? We will have to keep that in mind!! Here in Rochester today the weather was just Beautiful, I'm sure it was at least in the mid 20's!!! Now for all of our southern friends and relatives, you are thinking we are nuts, but 20's can feel like spring after we have had such freezing temperatures for so long:)

Carl is enjoying himself and feeling very well this week:) We went to Target and found a blow up dolphin that he thought would be a perfect compainon for the pool!! After waiting so long to finally get in the water, he got kicked out as they were draining the wading pool to clean it last night:( So he had to wait until today to take a swim with his new floatie:) He did have fun, but it is just not the same without his sister, brothers, and cousins with him:) He actually has had more fun riding on his dolphin in our room making motor-boat sound effects!!!

We did get to see Karla with little Jacob,(They hadn't gone home yet!!!) and Holly and Maya on Tuesday!!! It was so good to see them, and visit for awhile, it has been so long since we have seen each other. Both Jacob, and Maya have grown so much, and are just as Beautiful as ever:) Karla let me hold little Jacob, and Carl ran around with Devin, Jacob's older brother, (he has always reminded me of Sam) and Maya!!! They got along famously, I sure wished we were able to spend more time together, as the kids really Loved to play with eachother!!! Karla got such a kick out of Carl, she had called me earlier in the day to see about us getting together:) Well Carl answered the phone and told her exactly where I was at the time:) He said "She's on the Pot" I could hear him talking on the phone, and I wondered who he was talking to, I thought to myself, I hope it is my sister he is telling that to:)

To visit Jacobs site go to www.caringbridge.org/wi/jacobdavid

Or Maya's site go to
www.caringbridge.org/mi/mayam

Thank you everyone for your notes, emails, cards, Prayers that are lifting Carl and our whole family up!!! We feel so very blessed to have Carl feeling and looking so well right now!! We truly feel the Lord is hearing all of our Prayer requests, and showing us how much he Loves all of us!!! Please give Thanks to the Lord for all the many blessings he is giving us and for giving us this gift of time with Carl!!! We don't know what the future holds, or even what next week, or month will bring, but we do know that today we have a Beautiful, Happy, Energetic little boy to Love, and that brings so much Love in to our lives, he is a gift from God and we give thanks for that gift each and every day we have been given!!! God Bless all of you+

P.S. Check out John Franks site, go to one of the photo links, they have some pictures from John's benefit last Saturday!!! There are a couple of pictures of Carl with John and Char!!!

Have a Great Night everyone!!!!

We Love you all!!!

Kelly & Carl


Monday, February 9, 2004 11:56 PM CST

Good Evening to all!!!

Carl and I are back in Rochester at the Apache Best Western. Our phone no here is 507-289-8866 room 161 and I do have my cell phone with 507-640-1714

Today went well, chemo continues to be a breeze and Carl is a trooper as always!!! I am so proud of him!!! He is turning in to quite the little charicture here at the clinic on the chemo floor. The nurses Love to have him here, and enjoy fooling around with him:) These nurses get him going by setting him up with a water loaded syringe, and then encouraging him to call for one of the other nurses and then blasting them with water:) He thinks this is just a hoot, and he giggles right from his toes, and he usually gives himself away before ge gets the best of them:)

We missed Karla and Baby Jacob that were coming from Wisconsin, but hope to get together with Holly and Maya our friends from Michigan!!! Since none of us were able to get into the Donald House, we are all split up:( There was some water damage done to a group of rooms there, and they ended up closing them off, and have a waiting list to get in again:( We may still get over there before the end of the week, for now we are settled in here at Carl's favorite Hotel, and we feel very comfortable here too!! Tonight we went to see the Movie "Brother Bear" there is a movie theatre right around the corner of the Hotel, within walking distance, and the movies are only $1.00 per person during the week!!! It was a very cute Movie!!!

Today we went up to St. Marys to visit Uncle Dave's father Grandpa Carl Gores!!! Auntie Jeannie asked us to give him a big Hug for her, and we gave him a couple big Huggs!!! Grandpa Gores is in an Intensive Care Cardiac area, after having a heart attack, and possibly more than one. He looks very Good, and was very cheerful and talkative!!! We visited for a little while and he seemed to know who little Carl was, and was familiar with who we belonged to, and where we were from!! He talked of someone he knew that had cancer that had returned, and that he survived!! It was so sweet, he looked at me and said "I think he will make it"!! What a very precious man, we enjoyed our visit, and we will stop back again before we head back home on Friday:)

We also stopped down on 3rd floor to visit our sweet little Kala Joy!! She is in a Hepafilter (spelling?) environment, and we did not want to bring her any germs, so we waved and blew kisses from the window!!! We Love you Kala and are Praying for you to keep your Spirits up and that you are feeling well!!!

Our weekend was a very special one for our family!!! We went to John Franks benefit Saturday night, and what an Awesome experience that was to meet this very Beautiful family!!! What a Wonderful feeling this gave us inside, I cannot even explain how touching this was to see Carl with John!!! We worked our way up through a very long line of guests that were waiting to greet John and Char. When we got up to the front, Carl did not hesitate to go to John into John's arms and give him a hug!!! What a very touching moment!!! we felt such an incredible joy to be with their family with Carl!! We took a picture of Carl on John's lap later in the evening, Char, Sydney and I are also in the picture!! Last night, Carl was digging in the Camera bag and took out my camera. He wanted to look at that picture on the camera again!!! It was so cute, when I showed him the picture again, he smiled and said to me "I want to keep him"!!! We truly feel the Lord has revealed his Love, through one little boy, and one very special man!!

We will have to continue on with our vacation journaling when we get back home again!!! Bryan did a good Job of telling about our day at Universal Studios!!!

Have a Wonderful Tuesday and we will update as we can get computer access here at the Hotel. I did not bring the laptop with, as I thought I would be at the Donald House, and had trouble getting it hooked up last time:(

Thank you all for keeping us in your Constant Prayers, we appreciate all of your steady Love and Support!!!

Please keep Grandpa Carl Gores also here in Rochester in your Powerful Prayers!!!

Please keep Kala in your Prayers as she is inpatient while her counts are down. www.caringbridge.org/mn/kalajoy

God Bless all of you we Love you Dearly!!!

Kelly & Carl


Friday, February 6, 2004 7:59 PM CST

Hello everybody it's Bryan,

So far I have been doing good in school and playing Addapted sport's. We are 6 and 1 because I was in Faboulous Florida soaking up the sun and having a great time. It was so awesome and I hope we get another chance to go to Florida in the future.

As my mom said we got the opportunity to go to Universal Studios on our second day in Orlando. We ended up meeting up with People from the NYC Donald House ans saw our good freind's Richie and Jay. I really enjoyed the rides there because they where based on famous movies such as Jaws and Earthquake. The rides where just so realistic and that's why I liked them.

Another thing that I liked was the Roller Coasters the Hulk and Dueling Drangons at Universal's Island of Adventure's. They where really fast and had giant loops that's what I liked about it most. I'm suprised I don't have any head damage because my head was moving so much. After I got off the rides I felt like my head was going to fall off!

We also went on a bunch of 3D rides such as Spider Man and Shrek. It was really cool and it felt like you where in the movie. It was really cool and I felt to Boot afterward! I hope we all get to go back soon!!

Everything is good back in Minessota. The boys are running around and taking out all the toys. What can I say boy's will be boys. I'm glad I get to spend some time here with carl and family!!

Until next time peace and love!! PS I'm single and looking for a girl, so to all the girl's out there call Me!!

Goodninght and love to all,
Bryan, and the family!!


Tuesday, February 3, 2004 9:13 AM CST

Good Morning to everyone!!!

Hoping you are keeping warm in this freezing weather. I worked yesterday, and quickly refreshed my snowey delivery driving skills. It was quite a challenge with all the new fallen snow, and trying not to get stuck anywhere. I think today will be a worse day however, with the colder temperatures, and the snow now in a hardened state. I don't mind the snow, as much as I do ice. It was a relief to get back home, safe and warm again!!!

Carl is Happy to have Sam home to play with today:) They are already drumming up ideas, and hauling all of their toys out from everywhere. My mom has a care conference at Wood dale later this morning, so we will venture out and attend that meeting with my Dad. Mom has been doing better, her leg is still not completely healed, so she is still wearing the cast. They are using a TENS unit on her, to hopefully promote better healing. She is supposed to go back to Mankato sometime soon, to have the cast re-done. Tom's mom, Grandma Phyllis is doing well at home now too!! Carl visited Grandma yesterday afternoon while I worked, and I think she really enjoyed having him there:)

More on Carl's Disney World Vacation....

On Sunday, we got up and ready to go early, as we wanted to get a full day in!!! We decided to start with Epcot for the first day in the parks, and this was the day of the Disney Marathon. The Marathon started at Epcot, and also ended there later. Richie from the NY Ronald McDonald House, was running in the Marathon, and a group of families were with him at Disney for a couple of days. We would look for Richie at Epcot, and try to hook up with the group in the next day or two. We never did see Richie, but there were lots and lots of runners coming in at Epcot all day, and we had to cross over their running path between runners many times during the day as we were making our way around the park.

We started our day by finding Mickey and Donald Duck right as we got in the park!!! So Tom and Sydney ran to go find some Autograph books for each of the kids to get signatures in!!! They hurried back, as Bryan, Sam, Carl and I waited in line to see Donald first!!! It was sooo cute to watch Carl, as he looked up at Donald Duck:) He reached his hand out and touched his furry belly as he looked up in amazement at this adorable guy:) Mickey was next, and we were able to get signatures and pictures before there managers wisked them away. They were usually only around for a short time whenever they appeared, so when we would see any characters it would be a mad rush to get to them and get in line before everyone else did!!!

We visited several of the buildings including the technology exhibit, and that is where the little scientist's had their picture taken on a Huge digital camera!!! It was so cute to watch them, as they were the chosen little volunteers for the demonstration:) We were able to do alot of filming on our camcorder throughout our trip and this we completly filmed:) We went on several little boat rides and we went in the Big Ball on a ride that went all the way up into the Ball and back down again!!! Everything we saw or rode on, was a educational experience, and was very interesting to see!!! We enjoyed all of the countries later in the afternoon, and sampled some German food, and had Ice Cream at one of the stops we made!!! We were so Impressed by all the Beautiful flowers that were everywhere at Epcot, it was such a Lovely day, It felt so good to have sunshine and warmth on our skin in January:)

We went back to our Hotel, and enjoyed Pizza, and Hot wings for the special of the day at the Hotel restaurant. We talked to Virginia on the phone, our friend from the NY group, and visited about their plans for Monday. Richie had some extra tickets to Universal, and they invited us to join them for the day!!! We were very Excited to meet up with these guys, and decided to join them in the morning at the Swan Hotel for breakfast!!!

To be continued......


Have a Beautiful day in the Lord

Accept our praise, O Lord, for all your glorious power. We will write songs to celebrate your mighty acts!
Psalm 21:13

Please keep all of the other children also battling NB in your Prayers. NB WARRIORS

Please remember in Prayer, our other friends with other forms of cancer, or illness.

God Bless you all

Kelly & Tom
& Family


Sunday, February 1, 2004 0:51 AM CST

Greetings to all our Dear Family & Friends!!!

Happy Birhtday to Uncle Tom Johnson!!! Which was actually on January 26th, but is celebrating today up North in Duluth tonight!!! We send our Love and Wishes for a Wonderful Celebration!!! We are sorry we are not there to join the fun, but you are in our Hearts today and always!!

Also we missed mentioning Uncle Rick's on January 9th, Uncle Mark's Birthday on January 11th, and Auntie Janet's on January 12th!! Uncle Denny on the 13th, Grandpa George Robinson on January 14th, Tommy Johnson Jr. on the 24th!! We Love you all Dearly, you are also in our Hearts always!!

Thank you for stopping by and for keeping Carl in your Thoughts and Prayers!!! We are having a nice weekend, and it even feels a little warmer outside today:) Maybe we are just getting used to it?? The washing machine is thawed out, and back to running again, so Life is Good!!!

The guys on the fire dept. got together tonight for their annual Fire Dept. Christmas Party. And some of the wives, got together at Amy Jo Mude's for a little get together! We had a ball, I can't remember when I laughed so hard:) We played a new board game, that also has a DVD to follow along on the TV. (Can't remember the name of the game) But it is a Movie trivia game, Lots of Fun!!! The kids went bowling with Uncle John, & Auntie Sheila and the girls:) So we all had a night out, and enjoyed ourselves!!!

I changed the format again on the Vacation Pics:) I have had so much fun trying out different styles, It is hard to choose which I like best. I could sit and watch those pictures over and over again, and I get misty eyed each and every time. It just brings memories of such a fun time we all shared, and we will never forget our adventure together!!!

I promised I would Journal about our trip, so I thought I would try to write a little each day about our vacation!!

Carl's Wonderful Vacation at Disney World ~ Day 1

On Saturday January 10th, we flew out of Hubert H. Humphrey Terminal, early in the morning. We got up very early to get to the airport two hours early, and we had plenty of time to spare, so we waited in anticipation for over an hour to board the plane. We teased Bryan about needing a muffin bag on the plane, as he has a pretty weak stomach sometimes:) But he did just fine, in fact everyone had a good flight, and it was very uneventful!!!

We got to Orlando and the weather was in the 50's to start with, but it warmed up to the upper 70's later in the week. We got a rental van, and WOW was this wonderful to load four kids into:) We got a map and headed down the highway to find our Hotel:) We drove around, and around, and around, but could not find our Hotel (The Double Tree) so we finally ended up stopping and asking for directions:) We then drove right to the place:) We were greeted by a very sweet group of desk clerks that gave the kids a bag of their famous "Double Tree Cookies" they are two chocolate chip cookies put together!! YUM:) We then found our room, and Carl had a Beautiful Bouquet of balloons waiting for him, along with a basket full of treasures for all of the kids!!! We even were given a Mickey Mouse Alarm Clock:) Which we used every morning to wake up to... To start our day of adventures!!!

We cought our breath and rested for a little while, then we got ready and drove over to the Downtown Disney area, which was right down the road from the Double Tree. We ate supper at the Crab Shack, and then let the kids do some shopping at the Disney Store!!! Both Carl and Sam decided on a "Mickey Mouse" and in one of the above pictures, you see Carl hauling his back to the van when we were leaving:) We told them if they wanted these Mickey's then they would have to carry them on the plane back home, and sit with them too:) And that they did, when we went home:) Then we headed back to the Hotel, to get a good nights sleep before starting our first day at Disney World!!!

To Be continued......

Have A great Sunday Everyone!!! We are planning on having a little Super Bowl Party with the kids:) We are rooting for the Panthers, as we know several very special families from NC!!! and we are joining them to cheer on the Panthers!!!!

Please continue to Pray for Carl's Miracle, and Pray for all our friends also fighting a common battle.

I prayed for this child, and the Lord has granted me what I asked of him. So now I give him to the Lord. For his whole life he will be given over to the Lord. . .
1 Samuel 1:27,28

Love & Prayers+

Kelly & Tom
& Family


Friday, January 30, 2004 1:32 PM CST

Hello this Friday!!!

I changed the format of the photos, so that they are easier to see!!! You can click on any one of them to bring it up and look at it. I also added a few more that I had on another roll of film!!! And they are in day by day order!!! Enjoy!!!!

Things are good here on the homefront!!! Trying to stay warm, and get our washing machine running again, the drainage port has froze up:( UGGGG!!!!

Have a Great Day, and Keep Warm!!!

Love & Prayers to all

Kelly & Tom
& Family


Thursday, January 29, 2004 7:34 AM CST

Good Morning to Everyone!!!

It is good to be home, but it is sure freezing BRRRRR :0(

I added this picture Zeoflic above, and looking at the photos again, sure makes us wish we were back there in that warm weather. It is chilly, and Tom thought there was more snow on the way:( It sounds like many other places in the country are getting the same stuff.

Carl is doing well with his home infusions. It is a syringe push of antibiotic in his port-a-cath every eight hours. On Monday the nurse will come to change his line, and draw cultures again.

We will probably keep the little guys in the house for a few days and hibernate until it warms up:) Uncle Chuck is coming over later to stay with Carl so that I can go up to Redwood and visit my folks today.

Wishes to everyone for a Beautiful day in the Lord

Thank you for keeping the Prayer Power Flowing, We truly believe that all the Prayer is the reason for Carl's great success with his treatments!!! In Prayer Please give Thanks to the Lord for his healing Graces on Carl.

Please remember in Prayer all of our friends also battling cancer and other illness.

God Bless you All

Love & Warmth

Kelly & Tom
& Family


Thursday, January 29, 2004 7:34 AM CST

Good Morning to Everyone!!!

It is good to be home, but it is sure freezing BRRRRR :0(

I added this picture Zeoflic above, and looking at the photos again, sure makes us wish we were back there in that warm weather. It is chilly, and Tom thought there was more snow on the way:( It sounds like many other places in the country are getting the same stuff.

Carl is doing well with his home infusions. It is a syringe push of antibiotic in his port-a-cath every eight hours. On Monday the nurse will come to change his line, and draw cultures again.

We will probably keep the little guys in the house for a few days and hibernate until it warms up:) Uncle Chuck is coming over later to stay with Carl so that I can go up to Redwood and visit my folks today.

Wishes to everyone for a Beautiful day in the Lord+

Thank you for keeping the Prayer Power Flowing, We truly believe that all the Prayer is the reason for Carl's great success with his treatments!!! In Prayer Please give Thanks to the Lord for his healing Graces on Carl.

Please remember in Prayer all of our friends also battling cancer and other illness.

God Bless you All

Love & Warmth

Kelly & Tom
& Family


Monday, January 26, 2004 9:29 PM CST

Good Evening to everyone!!!

Hoping you all are home safe and warm with your Loved ones this chilly snowey evening.

Carl and I are safe and warm still at St. Marys Hospital:) We will be heading back home tomorrow sometime. Carl will require several IV infusions of antibotics at home for two weeks. He will have to have his port de-accessed and re-accessed at least every five days, and cultures drawn a couple of times. We have been so spoiled with hardly any Carl maintenance, since his tube feeds have stopped, and his port is not a Hicman as it once was. We will just be thrilled to be back home again!!!

I think this has been the most enjoyable Hospital admission Carl has ever experienced!!! He is not sick (besides the infection, but no symptoms) so he has been on the go, socializing with the nurses, other patients, visitors in the hall, the cleaning ladys OH MY GOSH, I just remembered his admission in NYC for transplant, that was quite a hoot too, and the nurses there know what I am talking about, I guess he has had two enjoyable Hospital admissions:) And if he is Happy then what more can we ask for!!! Today the nurses set him up at the nurses station with his lunch tray to eat lunch:) They have got him spoiled rotten, and he thinks it is ok to do whatever he pleases. I was talking to Auntie Jill on the phone today and I told her, I think he gets away with more, because he is so darn cute with his little bald head:)

On Saturday we had a surprise visit from Laurie and Terry Ourada, Laurie is Linda Harmoning's sister!!! Carl and I visited Laurie last year when she was here at St. Mary's while Carl and I were in Rochester. Laurie's daycare has done so much for Carl and our family, all of the parents put together a Beautiful Christmas Care package and sent it to us at Christmas time:) It was so great because I didn't get very much baking in this year, and everything was so Yummy!!! It was so Ironic, I actually thought of Laurie earlier on Saturday. We were down on the end of one of the wings, and I thought to myself that it looked like the floor that Laurie was on last year. Then to our Great surprise, Laurie and Terry stopped by for a visit in the afternoon:) Laurie was in the Hospital again, with a second surgery, but was being discharged on Saturday. We really Appreciated them stopping by, it was so good to see them, they are so kind and Loving!!! Laurie asked Carl if he wanted to send a message to John Frank, as they would be visiting John and Char on their way home:) Carl gave Laurie a Hugg and Kiss to pass along:) Very Sweet!!

I have met a couple of other moms here since last week, one of them has a little boy with Neuroblastoma too. It is always so nice to meet and talk with other people that are also fighting similar battles. We all can relate to each others problems, even if it is a different illness or type of cancer, we are all fighting for our Precious babies lives, and with that we all share a common understanding.

Thank you all for checking up on Carl, Thank you for your Steady Prayers that are surly being heard!

Prayer Requests ~

Laurie Ourada as she is healing from surgery this past week, and could use some of our Powerful Prayers!

For John Metzger, Husband of a coworker of Jenny Robinson
John Metzgers page

For Alex Scott, who is dealing with health complications, and has just found out about new areas of NB on her scans. Alex has been battling NB since she was one, and she is an Amazing fighter!!! Please Pray for Alex and her family as she needs lots of Prayer for healing right now!!! ALEX'S PAGE

Alex has another link to read about her Great fundraising works "Alex's Lemonade Stand" for Neuroblastoma!!! Our family is planning on joining the Scott's and other families around the country on June 12th to hold a Nation Wide Lemonade Stand!!! Our goal here at home with Carl is to hold our Stand at the Minnesota Twins Game!!! We have some work to do to get this rolling and to get all our ducks in a row, but I'm always up for a Challenge!!! To read about what Alex has done for all of our families go to ALEX'S LEMONADE

Please keep our sweet Chrisit Thomas in your Prayers right now too. Christi is needing lots of Prayers specifically for her blood counts to recover. She is not eligible for many studies due to her count situation, Please Pray very hard for Christi. CHRISTI'S PAGE

Please Pray for Carl's sweet friend Anna, she is having radiation treatments and could use many extra Prayers coming her way. ANNA'S PAGE

Please give Thanks to the Lord for answering all of our Prayers for Carl, for giving us a Gift of Time!!!

Love & Prayers to all

Kelly & Carl


Sunday, January 25, 2004 4:17 PM CST

Please give Thanks to the Lord, for he is so Loving and Good to us!

Despite the line infection that has kept Carl in Rochester to treat, an extra couple of days, we have actually had a couple of other very Good reasons to still be here!!

God is always looking out for us+

Tom and I spent some time visiting yesterday about Carl's current situation, his test results, and about pursuing the MIBG treatment in Philly.

I felt that I really wanted to do some more research and see what else is out there currently, and if something else would be more appropriate for Carl since the chemo is working at this point!

Well I did alot of research up into the wee hours of the morning, and did come up with a couple of ideas to look in to, and a couple of studies being available right here at Mayo, that we were unaware of.

I asked Dr. Anderson this morning if we could talk about Carl's treatment plan, and discuss current clinical studies that are available here at Mayo. Dr. Anderson, started with Great encouragement on the CT scan and PET-scan results. I was only told (Friday by a different Doc) that there was some improvement, but was not aware that it was as good as it really is. Dr. Anderson reported that there was "Unexpected Response" and "Nearaly complete Response" to the chemo Carl has been getting! He showed me the scans, and I saw for myself that they look very remarkable!!! I am trying not to get too excited about this, because I know the story for so many children that have relapsed. But for now, we will give Great Thanks to GOD for giving us this hope.

Right now where we stand, Carl probably would not qualify for the MIBG study, as there must be some tumor present in his body to meet the requirements. He has such a small amount left in the jaw, and the scan was taken on Tuesday before 4 more infusions of chemo. We have decided to not pursue the MIBG treatment at this time, because of the Unexpected response to the chemo, and we will keep Carl on this regimend for several months. We will then review what is available either at Mayo or elsewhere for the next plan of treatment. There are several new studies being worked on right now, and Dr. Anderson is involved in alot of the research that is happening at Mayo right now!!

I feel almost stunned, but deep down very pleased. I know it would not have happened without the Constant, Powerful Prayer that has been flowing so Strongly for Carl!! I just want to give thanks to the Lord above for his Unending Love, and Thanks to all of you for helping us get our requests lifted up on behalf of Carl!!!

God Bless all of you+

We will be sent home tomorrow with orders to do several daily infusions of antibiotic (I believe at home) for a couple of weeks. Carl has been fever free for over 24 hours, and he has been running the halls and peddling everywhre on a little tykes farm tractor that he found down in the playroom:) He is the hit of the floor these past couple of days:) Dr. Anderson said that he has sure brought smiles to many faces:)

Love & Prayers

Kelly & Tom
& Family


Friday, January 23, 2004 5:18 PM CST

Saturday afternoon update

Room no 2-149
Phone number 507-287-4161


Hello from St. Marys Hosp. in Rochester. Last night about 10:00pm, we received a phone call from Dr. Anderson. Carl's line culture came back positive with an infection:( He wanted Carl to be admitted ASAP. So here we are, enjoying the familiar comforts of Inpatient life, for a couple of days. Carl will get a different antibiotic (Vancomycin) every 6 hours. After which type of bacteria we are dealing with, is determined, then the Docs will decide how to further treat the infection. We may be able to go back home on Monday, and Carl would require up to 14 days of daily antibiotic in Redwood. That would pretty much bring us right up to when we need to return to Rochester again. He is feeling well, his fever is better, but we are keeping a close eye on it because of his febrile seizure history. We are up in the library right now checking out a few movies, and we are waiting to be loaned a laptop in our room. (Our laptop does not work here either for some reason)? Tom is here with us, he drove down last night after we received the phone call about the positive culutre. The kids are shipped off with Auntie Jill who is in Morton this weekend, and with Uncle John & Auntie Sheila later. We will keep updating, but really expect this to blow over without any complications, as Carl looks so well and is asking to go shopping for toys right now:) We were given a pass to leave the Hosp in between antibiotic infusions, but we decided to stay in the building today, as Carl was having some tummy pains (diarreah) from the Irinotecan.

Thank you for thinking about us, and for all of your steady Prayers!!! We are very Happy about the scan results, and Dr. Anderson seems very pleased as well, which is encouraging to us!!!

God Bless

Love & Prayers

Kelly & Tom
& Carl
**********************************************************************


Hello dear family and friends!!!

We are still at the "Donald House" in Rochester. Carl spiked a 101. fever last night, which required two days of antibiotics to cover a potential line infection. He will receive the second dose tomorrow at 9:00am, then we will hit the road for Franklin!!! I am not sure what the cause of the fever? I think it could possibly be a cold virus:( I am starting to get a runny nose myself, and I believe the kids at home have been kind of hoarse and with runny nose since we got back from Florida:( I think the weather change is partially to blame, plus the moisture in the air was causing us all to feel a little sinus-ie (is that a word?) Anyways Please pray that Carl's fever is resolved soon, and that this is nothing more than a virus.

I did receive scan results this morning and am very pleased with the report!! The Head CT showed a reduction in the lesion in Carl's jaw, and the PET showed no new spots. Overall he is remaining stable!!! We have scheduled another round of Irinotecan/Vincristine beginning on Feb.9th, and I will be calling Dr. Maris in Philly to touch base with him on scheduling Carl for sometime in March. Carl was tentatively set up to do the Phase II study, (Single Dose MIBG) but Dr. Maris wanted to hold out until an opening was available in March for the Phase I rapid double infusion MIBG treatment. I can't believe we are already coming up to February.... I can't believe we have gone to Disney World and are back already.... We just Pray that Carl continues to hold out and remains stable.

Thank You everyone for keeping the Prayers rolling for Carl!!! They are being heard, and we are feeling the Lords comfort surrounding our lives!!!

Please keep Kayla in your Prayers, she is doing good, she is in remission again and waiting for a bone marrow donor!!! Her site is www.caringbridge.org/mn/kalajoy

Please Pray for Jenny Robinson's co-workers husband, as he is battling cancer as well. His site is www.caringbridge.org/mn/johnmetzger

Please remember all of our friends in your Powerful Prayers that are also battling cancer, and other illness.

May God Bless you all for your Love and Support

Love & Prayers

Kelly & Carl

P.S. Check back later this weekend for Disney Updates and Photos!!!

P.S.S. Tom said that Sydney's band concert went great!!! She told me tonight that she wants to either be a

Marine Biologist (after visiting Sea World)
Teacher
Journalist

We miss all of the kids back home and can't wait to hugg and mooch them all up!!!!!


Wednesday, January 21, 2004 8:06 AM CST

Good Morning this Wednesday!!!

Thank you all for your Wonderful notes, and for checking in on us so often:) I am sorry for the lack of updates, It is frustrating not being able to get on a computer for very long. We still are unable to hook up with the laptop, and the house computer has been on the fritz some:( I was able to check the site yesterday from the clinic for a few minutes, and scan over our emails. I received an email from our Sweet Nephew Kevin White, and he has created a Beautiful Screen Saver of Carl!!! If anyone would like to look at this, or download this onto your computer, you may go to the link below "Carl's Zone" and check it out!!!! Thanks so Much Kevin for doing this, I can't wait to get home and look at it too!!! (could not have a good look from Mayo)

Our week is going very good!!! The first two days of chemo were a breeze, and Carl is as full of energy as you could imagine!!! Today at 10:00am he will have a Head CT to compare to the last one that showed the lesion in his jaw. Then on Thursday a PET scan. We will meet back with Dr. Anderson on Friday to go over the results and visit about the plan for Carl's continued treatment.

Thank you Prayer Warriors for keeping the Strong Prayers coming for Carl!!! We feel peace and comfort surrounding us this week!!! We can't wait to get back home again and get to stay there for a couple of weeks:) We will miss Sydney's first band concert on Thursday night:( She called me yesterday afternoon to tell me that bad news:( It breaks my heart, as I was waiting for this moment for her ever since she took up the Trombone. I hope Tom will be able to film her, and we can watch it together when we get back home.

Have a Beautiful Day in the Lord+

Look for Miracles, they do happen every day!!!

Prayer Requests ~

Please Continue to Pray very Hard for "Carl's Miracle"

Please Pray for Kala here in Rochester during her treatments and as she is battling a relapse too.

Please Pray for all our friends with cancer, that they may find complete healing.

Love & Prayers

Kelly & Carl


Monday, January 19, 2004 7:15 AM CST

Hello to all our dear family and friends!!!

Carl and I are guests at the "Donald House" in a brand new room, never before used, and enjoying the comforts of our familiar, old second home:) It feels good to be here where we have felt at home for so many times before:) We were even surprised that our sweet little Kayla Joy from way up in Northern Mn is here with us too:) Sadly Kayla is back in treatment, dealing with a relpase as well.

Our room no is 315

Our phone no is 507-424-3207

I am having trouble getting the laptop to connect to the internet in our room:( I will see about getting some help later. In the mean time, I must resort to the one and only computer on 2nd floor, and will not have as much time to journal as I would like to, but will soon!!!

Carl has labs at 8:50, then an appt. with Dr. Anderson at 10:30 this morning. Chemo should follow soon after, and then we are off to Walmart to get some film developed:)

I will update again later today!!!

Have a Great day everybody, and keep Praying for "Carl's Miracle" Please remember Kayla and all of our other friends in your Prayers too.

God Bless+

We Love You all

Kelly


Saturday, January 17, 2004 8:18 PM CST

Hello from the Robinson Family Vacationers!!!!!

We are back home after a week of Fun and Adventure in Beautiful Sunny Orlando:) We got used to the 70 degree temperature very quickly this week, and it did feel Heavenly!!! We enjoyed the green grass, and fragrant blooming flowers that adorned all of the parks:) We almost forgot it is really January, and back home we have three more months of winter to endure:( We were glad to get back home though, as "There's no place like home" :0)

We do have many stories and pictures to share!!! I will update more throughout the week, there is just so much to report!!! We had a Fantastic Family vacation, and we made many memories that we will hold very dear to our hearts forever!!! Thank You Jackpot Junction for the gift of this Wonderful trip!!! It was a Magical week for Carl, and our whole family!!! A very special Thank you for the gifts of extra spending money we received, we were able to take in a couple of extra events such as Sea World, and we enjoyed a Dinner and show at the Dixie Stampede!!! The kids also brought home many souvenirs of our Disney Vacation!!! We are So Thankful for this Dream come true!!! And we will never forget your generousity!!!

Thank you Jenny for keeping Pika for us this week!!! We can't believe how much she has grown, and her color is really changing:) (Maybe she will be Carl's little Orange puppy afterall) She was excited to see us, and we were Happy to hear her little yippy barking again:) We heard Lucky and she got into a bag of treats last night, it sounds like those two dogs are partners in crime:)

Thanks to Virginia and Jay, and Richie at the NY "Donald House", and everyone in your group that let us hang out with you all on Monday!!! We Loved every minute of our day with you guys!!! We are so Thankful we were able to get together with good friends, and very Happy to make some new friends too!!!

Tomorrow Carl and I will be leaving again for Rochester. Carl will begin his third round of chemo, with our present treatment schedule to keep his cancer at bay. He has been feeling very good all week, a little complaint of his knees hurting, but we chalked that up to the rides we put him on that day at Universal Studios:) We have noticed that his hair is thinning out alot:( In fact if you grab ahold of a little tuft of hair, and give a gentle tug, it comes right out:( But knowing that hair loss is due to the effects of the chemo... working to stop cell division, (hair being "cells") brings comfort that the chemo is doing something, and hopefully stopping the division of NB cells as well.

We expect that Carl will be scanned this week, possibly a PET Scan. This scan will highlight any areas of NB in his body, and give us a complete picture of what we are dealing with. I am Praying very hard myself, for a miracle for Carl. My Prayers are for a "Miraculous Healing" for Carl. Maybe this is too much to ask of God, but I decided to go for the "Big one", and to also ask all of our Wonderful Prayer Warriors to join us in Prayer for this specifically.

I talked to Helen from the Rochester "Donald House" tonight, and she is pretty sure there will be room at the Inn this time:) So hopefully we will be settled in there this time tomorrow night!!!

Have a Good night everyone and God Bless+

May he grant you your heart's desire
and fulfill all your plans. May there
be shouts of joy when he hears news of your victory,
flags flying with praise to God for all that he has done
for you. May he answer all your prayers!
Psalm 20:4-5

Love to All

Kelly & Tom
& Family


Thursday, January 8, 2004 10:53 AM CST

Good Morning and Thank You for Stopping by:)

Thank you for all of your Great Disney Advice everyone!!! We received so many Wonderful tips and suggestions!!! It is a common agreement that we are going to the Most Magical, Fun place for kids!!!!

We have learned that our friends Virgina and her son Jay, will be at Disney around the same dates and we will be able to meet up with them!!! We met them last year at the NY "Donald House" Jay is Bryan's age, and he has been battling NB for quite awhile. Virginia and Jay lived at the "Donald House" for over a year while Jay was treating at MSKCC. Bryan became friends with Jay during his visit to NY with Carl and I in July. They had a Great time together!!! One of Bryan's highlights was going to a Movie with Jay (Alone on the streets of NY) What was I thinking???? They managed just fine and lived to tell about it:) I knew that Jay had NY street smarts, and I trusted him with our "West Side Home Boy" Bryan thought he also had street smarts and felt quite confident:) Bryan got to know all of the "Donald House" staff (he knew everybodys name, I didn't even) and many of the other kids staying there. Richie one of the staff, is running in a Disney Marathon and is bringing along several families to join him. They are getting there today in fact!!!! It will be very Great to see some familiar faces in a far away land!!! I bet Bryan and Jay will even get to hang out together again!!!! We are very Excited!!!!

The boys are counting down the days, and soon it will be hours!! They are still trying to pack toys and treats for the trip:) I picked up a box of zip lock bags to store some toiletries and items in our suitcases. These two partners in crime, have been busy filling all of my bags with their items that they must bring along:) Silly Boys:) They are having fun with their anticipation, so I guess that is all that matters!!!

Thank you everyone for your Steady Prayers!!!! We are still in the midst of a crisis, but we feel peace and comfort surrounding our lives, as we put our trust in the Lord. As I have said before, there is a big plan in the works, and we are all a part of it!!!

God Bless You all

Therefore we do not lose heart. Though outwardly we are wasting away yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is Eternal.
-2 Corinthians 4:16-18

Love & Prayers

Kelly & Tom
& Family


Wednesday, January 7, 2004 10:25 AM CST

Good Morning to everyone!!!!!

I had not planned on updating this morning, becasue I should be cleaning and packing, but I had to share with you a very Special Email I received today:) Our Sweet Stacey from Camp Jornada did an 1800's tipi camp out this weekend!!! Burrrr it was very chilly this past weekend:)

Here is what Stacey said:

Kelly,
This weekend when I was at the rendezvous, I had my tipi set up. Next to my tipi was a gentleman by the name of White Eagle...he is Blackhawk Indian.
I had told him about Carl earlier in the day when we were looking at my scrapbook from camp...that night he asked if we should do a ceremony of healing for Carl with sage and sweetgrass and the medicine wheel..
He shared a legend with me of how Natives used the medicine wheel to teach them how to approach life.
It is actually done in four stages with each stage relating to a direction of the earth (north, south, east, west).
He explained that there are four steps....

The first being SACRIFICE ~ A sacrifice is necessary to overcome a crisis.

The second one being PRAYER ~ People need to pray deeply for what they need.

The third is TRANSFORMATION ~ There are many stories of miraculous healings that take place spontaneously as a result of prayer.

The fourth step is THANKSGIVING ~ When a person is healed in body or in spirit..he shall use his strength to heal other people for the remainer of his days.

Kelly...We know that Carl has sacrificed his little body and is a true Warrior! The Prayers from across the country have been tremendous. We WILL see the Transformation and Miraculous healing of little Carl...And then we WILL indeed have Thanksgiving and know that Carl WILL continue to give strength to all people he comes in contact with.



I added a picture of me winter camping this weekend...I'm bundled up trying to stay warm and the temp was 5 degrees!

Thank You Stacey So Much, you made my day!!!!!

To visit Stacey's Camp Jornada Website click here JORNADA ROCKS

Have a Great Day Everyone!!!!!!

Love & Huggs to all (((((())))))

Kelly & Tom
& Family


Tuesday, January 6, 2004 8:25 AM CST

HOPE

Do you know what hope is?
It's magic and it's free
It's not in a prescription
It's not in an IV
It punctuates our laughter
It sparkles in our tears
It simmers under sorrow
It dissipates our fears.
Do you know what hope is?
It's reaching past today
It's dreaming of tomorrow
It's trying a new way
It's pushing past impossible
It's pounding at the door
It's questioning the answers
It's always seeking more
It's rumors of a breath
It's whispers of a cure
A rollercoaster ride of remedies unsure
Do you know what hope is?
It's candy for the soul
It's a perfume for the spirits
to share . . . makes you whole.

author unknown


Good Morning to everyone!!! Thank you Ann for this poem, it really touched my heart:)

Carl is doing well, he is feeling very good!! His tummy pains have continued a bit, but we are blaming it on the diahhrea from his chemo last week. I always feel better when I can blame his symptoms on something. We are giving him Imodium and hoping this resolves itself very soon!! On Sunday night, Tom caught Carl painting on the bathroom wall with finger-nail polish:) All I can do is just smile:) Then last night I was changing the sheets on our bed, as Carl had spilled a pop on the blankets. He climbed up, and was jumping like a little monkey, as I was trying to tuck in the corners:) How does that sound for a "Normal Kid" :) Last Thursday night, in Rochester, I took Sydney and Carl to the movie "Cheeper by the Dozen" :) it was very cute!!! I could totally relate to many of the incidents that took place with that family!!! Which feels very normal for us here with our four kids:)

The kids are getting very Excited for our trip!!! Carl has been searching for toys and things that he wants to bring along:) He is so used to staying at Hotels, and the "Donald House" with lots of idle time. I don't believe Carl or Sam understand just what is in store for them at Disney:) We can't wait to see the joy in their faces as they discover all of the Enchantment to Behold!!!!

Thank you for checking in on us, and for keeping your Powerful Prayers going so strong!!!! We can feel all of them, and know that God is planning our next step. We give all Glory to God for Carl looking and feeling good!! You really would never know this little boy is sick!!!


Beginning or End?

You have cancer they've told you
Eyes fill with tears
A day to remember
Can't control the fear

You cry for the first day
But, then you must pledge
To determine the meaning
New Beginning? or End?

Choose New Beginning!
Life's "second chance"
Muster your courage
With no backward glance

God, family, vacation ~
Your new lease on life
Forgetting the everyday
Struggles and strife

Cut, burn, or poison?
Must you pursue treatment?
Not glamorous choices
But, life's bittersweet-ness

A vow of survival
A mission plan set
Surgery, radiation, or chemo?
How bad can it get?

You give up some flesh
Take poison ~ how bold
Irradiate your skin to 100 years old

Some go bald in the process
And needles abound
It's hard to believe
That you're not losing ground

Then, there are the people
You've met on the way
Be thankful for them
Each and every day

Not due to the illness
But the lessons it brought
Trade in this journey?
I would guess not

Without this experience
How would you know
what courage you have
Or how far you could go?

To get one more chance
At the legacy you'd leave...
You couldn't imagine
What God had up His sleeve!

For cancer has taught me
To give God His due
And pass on this message
From me to you

Believe in the miracles
While working to come back
God ~ and the Angels
Will keep you on track!

Leslie Droll ~ From "When you get it"


Love & Prayers

Kelly & Tom
& Family


Sunday, January 4, 2004 4:09 AM CST

Good Morning everyone!!!!!

HAPPY BIRTHDAY TO ~ Jessi Robinson today January 4th!!! Finially the big *21* Hope you all had fun last night:) We are looking forward to going out for Supper tonight, and Celebrating with you too!!! Love You Lots Sweetie:)

Tom and I have been up for a little while, actually Tom is back to sleep, but I am suffering from this Robinson Insomia tonight. We were woke up about 2:00am, with Carl. He was crying of tummy and leg pains:.( We comforted him and gave him some pain meds, he is sleeping soundly again. It breaks my heart that he is feeling pain, and we are not really sure what is going on. With chemo all week, the NB should not be causing that much pain? It scares us to think that it is taking off and getting worse. Please Pray very hard for Carl that his pain is better, and his cancer is staying stable.

The Redwood Gazette printed an article on Carl in the December 24th edition of the paper. Carl was chosen as "Person of the year" I have been waiting for this to be added to their website to add a link to the story, but it never was added. I would like to share this with you all, as many of our readers are not from the area, and I know our NY relatives would like to read the story about Carl.

CARL'S SONG


Story by Troy Krause - Staff Writer

On Dec. 28, 1999, Carl Robinson was born. Like all little boys, Carl - who is now almost four - likes tractors, trucks and throwing baseballs. He also gets owies, scrapes, bruises and cuts. But for Carl, there is something more. There is something deep down in this little boy that gives us all the courage to move ahead because of the comparatively insignificant issues of our lives. Carl has cancer. In fact he has such a rare form of cancer (known as neuroblastoma) - something any four-year-old boy with a limited vocabulary could not pronounce let alone understand - that it has made a normal life an oxymoron.

Carl is sick, but when you talk with him or see him playing with his big brother Sam, you certainly could not tell he has this disease threatening greatly his young life.

According to Dr. Steve Medrud, the doctor who helped deliver Carl, neuroblastoma is a disease that affects the nerve cells in the body. He said that it most commonly appears in little boys about two years of age. Carl, unfortunately, fit the pattern.

One year ago, months after the original diagnosis, Carl went into remission.
"He had surgery to remove a tumor," said mom, Kelly Robinson.

After undergoing that surgery, Carl would face round after round of chemotherapy in hope that it would keep him in remission. From the looks of things, alone with stem cell transplants in a New York hospital famous for its work with neuroblastoma patients, Carl was doing well.

"There was a time in May when he did radiation treatments," Kelly said. "He did two a day for seven days."

Every three months, Carl is scanned to make sure nothing is coming back.

In November, Carl and his dad, Tom, made the trip to New York for another round. Less than two weeks later, the bad news hit the Robinson family.

Carl had relapsed.

"They found cancer in the marrow and in some of his hard bone," said Kelly. "I guess you could say the good news is that they haven't found any in his organs."

Although no one really wanted to hear that Carl had relapsed that is the reality.

"Right now, we just stay hopeful," said Kelly.

Right now, Carl is on a waiting list for a new children's hospital in Philadelphia which specializes in neuroblastoma cases that have been in remission and cancer has been found again.

"Whats good is that these doctors have seen lots of cases every day of this," she said. "It's not like we are the first."

Kelly said for the family the hope is to continue buying time. "We just want to keep him in treatment until they find a cure," she said. "There are many other families who have been doing this for a lot longer than we have. What we want is for this to be stable, managebale."

Kelly said the family can hold on to hope because of all the new research being done in the area of neuroblastoma. "We all believe it is just a matter of time before they find a cure," she said.

Kelly said Carl doesn't really understand much of what he is facing. "He knows he is sick," she said.

He also knows a lot about travel, as he has spent an awfull lot of time over the past year on the road making trips to New York and Rochester. "There were two months straight where we were gone," said Kelly. "What is nice to know is that we have the support of family and friends back home who have been willing to do anything we ask."

When an appeal is made, people jump at the chance to help.

One of those who has been there for her sister is Holly Weilage.

"I think this is a very strong family, they're very close," Holly said.

Despite that strength, Holly knows that it is only with the support of their faith that the family can keep moving ahead. "I know my sister," Holly said. "There are days when I can tell it is getting to be a lot for her, but God's strength is helping her through."

When Holly looks into the eyes of that little boy, she sees joy. "He is cuddly and loveable," she said.

Holly said on the day after they found out that Carl had relapsed she took the day off to be with Kelly and Carl.

"That is a day I would not trade for any," she said.

She recalls putting Carl down for a nap knowing that he knew she was going. When Carl asked his auntie if she was leaving she said it nearly tore her heart out to say she had to go.

She said it is a hard thing to see a child suffer, but she added the times when anyone is around Carl certainly change all of that.

He is a little boy with a heart, a smile and a family that is determined to see this through. Carl will get to spend Christmas and his fourth birthday at home this year. Right after that he will be packing up and heading out for another round of the latest in cancer fighting treatments.

What is nice, said Kelly is in between there the family will be able to get away for a couple of days thanks to the funds raised during Jackpot Junction's fund raiser for Carl held earlier this year.

Kelly said the family is very appreciative of that donation and every single card, word of encouragement, prayer and otherwise that people have offered on behalf of Carl.

Kelly said it is hard not to let Carl see the emotion. There are days when she cries. "We all have good days and bad days," she said "We all try to stay as positive as we can not only for Carl but for all of the kids."

In four years, a little boy named Carl has touched the lives of so many - many more than others will touch in their entire lives. "Carl has been a trooper through every thing," said Kelly.

Little kids are not supposed to get cancer, but they do, but it is not just because Carl is sick that we are telling this story. Carl has demonstrated strenght, courage and determination beyond his years. If a three year old can impact the lives of millions, this is the one who did it. Thousands have called up Carl's web page to make sure they are up to date on what is happening with him. He has become part of so many daily routines. His family has demonstrated strength, faith, and dedication to each other. It is an example for all of us to follow. For that reason, Carl is the 2003 Gazette person of the year.


A very special Thank you to Troy Krause at the Redwood Gazette for doing such a Wonderful Story about Carl!!!

Wishes to you all for a very nice Sunday!!! We will not be leaving for our trip until Friday Jan. 9th. I will keep updating until we leave, and then I will try to update somewhere from Disney during the next week:) We are looking Sooo forward to that warm Florida Weather!!! It is getting too cold here....BURRRR

Love & Prayers

Kelly & Tom
& Family



Friday, January 2, 2004 6:49 AM CST

Good Morning and Happy Friday!!!!!

We hope you all have had a Wonderful New Years Holiday!!! Ours was very nice, Anutie Janet stayed one more night, and spent New Years Eve with Bryan, Sydney, Sam, Carl & I. It was so good to have her here. I truly appreciate every minute of her assistance, and company here with us!!! It was a pretty uneventful evening. The kids got out of the pool early, as it was so crowded that day. It was very full, and busy here at the Hotel, I mentioned to Janet several times that I was so glad we had Carl's birthday party when we did, and not on New Years Eve like we had talked about. I don't think we would had enjoyed it as much as we did. So we ended up getting a pizza, we heated up left over chicken wings, and had a feast!!! We were all in bed early watching Dick Clark's Rockin Eve:)

Carl's chemo has been going ok. He required an antibiotic as he was running a low grade temp on Tuesday morning, so the Dr.s put us in the Peds Infusion Therapy Center of St. Mary's Hosp for the rest of the week. We were very Happy about that, We were able to see some of our wonderful nurses that knew Carl from his many inpatient stays:) We got to see Jen one day from Child Life, and saw many smiling familiar faces in the halls:) What is so difficult though, is to stop and talk to someone, and then explain that "Carl has relapsed" then to see the disappointment in their faces. It is almost as hard as the first time around admitting that Carl has cancer.

One of the points brought up at Carl's Dr. Appt on Monday, was about the lesion in his jaw bone. Dr. Anderson said that if it starts to cause him pain, we can do radiation to help alieviate the pain. Well so far he has not mentioned anything, until last night. For the first time he came to me and told me "My cheek hurts" I asked him to point to where it hurts, and he pointed right to that area of his right jaw:..( I can't tell you how much this breaks my heart. I don't really understand how this chemo is working, if it is at all I guess? Then I recall what the Radiologist mentioned to me the day Carl had the head ct, that he could tell that side of his lower face looked fuller. Now of course I think it looks fuller too.

Carl has one more day of chemo this morning, then we will be heading home. We will just keep an eye on him and monitor any pains, then address this again at our next visit which is January 19th. Some of you have already heard, but I guess I have neglected to mention that we are going to be taking our family trip to Disney world this next week. This past summer, Jackpot Junction held an Angel Golf tournament to raise money to send a child and their family on a dream vacation. Carl was the chosen recipient for their golf benefit!! We have been so busy with trips to NY for treatment ever since, and just have not had the time to allow us to take the trip. We have decided to go right now, between Carl's chemo treatments while he is still feeling good. We don't want to wait any longer, as we hope to soon be getting him in to the Hospital in Philly, and will begin another involved treatment plan, and don't know what our time will allow.

We are excited about our upcoming vacation, but with this brings bittersweet feelings for Tom and I. We are so Happy that we will be able to do this with the kids, as we have never been able to take any vacation with them, and we have always talked about the day we would go on a vacation. Some of you know about our "vacation fund" We started to fill a large cheese ball container several years ago, with loose pocket change, and coins we would find from the laundry or in the couch:) The kids would even put their money they would get in cards for their birthdays in our "vacation fund" because they really wanted to do that!! So this is truly a "a dream come true" for our family:) The other part of the bittersweet, is that when we were Blessed with this vacation, we thought Carl to still be in remission. Our idea of taking this trip would be a celebration for Carl. Now that has changed to the idea of wanting to do this while there is still time for Carl.

I do believe we will be very Happy when we begin our trip, and feel nothing but overjoyed when we witness all of their Excited faces when we get to Disney!!!

I had better sign off, and get started cleaning our room out, we will be checking out this morning when we leave for Carl's treatment. Carl is so Happy to be going home, he cried last night when Sam left with Auntie Janet. I told him one more night then we would be going home too!!!

Thank you all for keeping us in your Prayers, we couldn't do this without all of your support!!!

Love & Smiles

Kelly
Sydney & Carl

P.S. we are also excited to be getting back home to Pika!!! Oh Tom too:) Tom has had little Pika all week to himself, we are hoping he has actually bonded with the little sweetie:) (he would never admit it if he did) :)


Wednesday, December 31, 2003 5:19 PM CST

HAPPY NEW YEARS!!!!!



"CANCER NO MORE IN 2004" !!!!!


Thank You Ann for that Thought!!!! Yes I think that sounds Wonderful....A very Beautiful Thought, and a reasonable goal to "Fight For"!!!! Go Carl!!!!!

I know we can count on all of you for your never ending Love, Support, and Prayer to carry us through!!!!! Carl's Commando's was created for our team this past year for the "Relay For Life" we were made up of a very large family and many friends!!! We consider all of you reading this today, a member of "Carl's Commandos"

Through all of the Love, Support and Prayer, we are all fighting for Carl....We are "Fighting For A Cure"!!!!!

Thank you all for being there with us, and for us, throughout all of Carl's Journey!!!!!


We hope you have a Fabulous New Years Eve!!!!!



We Love You All!!!!

Love & Happiness,

Kelly & Auntie Janet (We get Auntie one more night!!!)
Bryan, Sydney
Sam & Carl:)

Be sure to check out the photos I added from Carl's Birthday Party!!! Thanks Matt & Mandi for sending these to us, If anyone else has any pics that they could share Please feel free to email them to us!!!! I would Love one of Carl with his Birthday Cake!!!!!!! I have film to get developed but will probably not get them done for a few days:( THANKS!!!!!!


Monday, December 29, 2003 5:46 PM CST

Hello from Rochester!!!

Sorry for the lack of update, but Mom has been suffering from a Major Migraine for a couple of days:( At first I blamed it on the blue smurfie deal from Saturday night, but when it was worse this morning, I knew it was a doozie, and had nothing to do with a blue smurf....ok Jenny (ie deal) :)

I am feeling better, and I am very Thankful that Auntie Janet is here for a couple of days to help out with the kids!!! They have been swimming fools!!!! Sydney has been swimming since after breakfast today:) And the little boys are just as bad, they don't want to get out of the pool:)

Thank You All for the Wonderful Birthday Wishes for Carl!!! I must say, he had an Amazing Birthday Celebration!!!! It was so fun to watch him running around, and playing:) He Loved all of his presents, and the best part was watching him so intrigued with his cake!!!!! It was not completely orange:( It had orange lettering, and trim. I had a couple of photos put on top (snowmobiling/sledding) from a couple of weeks ago:) Then it had two little snowmobiles on top!!! Carl spent much of the afternoon looking at his cake, and showing everyone that came along "His Birthday Cake" He Loved It!!!!

Thanks to everyone that came to share with us, Carl's 4th Birthday!!!! We loved seeing everyone, and Carl had the Best Birthday ever!!! The Aunties and Cousins had fun trying to "Short Sheet" a couple of beds in our group:) We all had lots of good laughs, and enjoyed great conversation and company!!!!!

Today went very well at the clinic for Carl!!! We got to see Dr. Anderson today, and that was Wonderful!!! It is so good to hear positive compliments about Carl, instead of only negative. Carl has grown, and even put on some weight since his last Mayo visit a couple of weeks ago!!! Dr. Anderson was very pleased to see Carl looking so well, and talking so much!!! Dr. Anderson even asked about Carl's brothers and sisters:) Carl had his chemo, and we have added Vincristine to his regimend of Irinotecan. We will talk about scanning after Carl's next round in January.

Sydney just drug herself out of the pool and is a wrinkly prune:) She is complaining of being hungry, so I will sign off for now, to go feed my little starving swimmers!!!

Thanks again everyone for all of your Wishes, and Prayers!!! We Love You all!!!!!

Love & Huggs

Kelly & Janet
& Kids


Sunday, December 28, 2003 11:49 AM CST

HAPPY BIRTHDAY TO ~

CARL TODAY DECEMBER 28TH!!!! Happy 4th Birthday Carl

JOLENE PANITZKE!!!!

CARLA SCHROEDER!!!!

Wishes to you all for a Wonderful Day!!!!!


Carl had a Great Birthday Party yesterday in Rochester with all of his family!! We have lots of Fun Memories of his special day!!!

Some of the family is getting ready to leave, so I will sign off for now, and update more later:)

Lots of Love

Kelly & Tom
& Family


Friday, December 26, 2003 10:04 PM CST

Hello to all our Wonderful Family & Friends!!!

HAPPY BIRTHDAY TO ~ Cousin Freddy Hauck December 27th!!! We hope you have a very Special day Freddy, we miss you and Love you Bunches!!!! Carl talks about you and Patti all of the time:) Have a Great Day!!!!!

We are busy getting packed up to head to Rochester tomorrow. The kids are So Excited to get there!! They have thier swimming gear all ready, Carl has his little swimmer pants packed:) We are expecting quite a group to join us at the Hotel for Carl's Birthday Party!!!

Carl's buddy Eric Fischer had surgery today at St. Mary's Hospital, we will stop by to see him before we check in to the Hotel. Please keep Eric in your Prayers for a speedy Recovery!! ERIC'S PAGE

Thanks for all of your Christmas Greetings, and Wishes!!! We had a very nice day, the kids got lots of fun stuff!!! Tom is listening to his gift from Sarah "The Best of Simon & Garfunkel" right now:) heeheeee Tom just got done telling Bryan "Now this is Music!!!" :) "None of the Rap Crap!!!"

Thanks for stopping by everyone, we Appreciate your Support, and Steady Prayers!!!!

Please remember in Prayer ~ all of our friends and their children battling Cancer, and other illness.

For Grandma Greer, as she is having some symptoms of congestive heart failure.


This is my hope for you,
that all your prayers will be
answered. When they are,
you are to give praises to
God for his grace and
mercifulness. Why not
have a party to give praise
to our almighty God? Shout
the wonderful news of what
God has done for you.

Emilie Barnes

May he grant you your heart's desire
and fulfill all your plans. May there be shouts of joy when
he hears news of your victory, flags flying with praise to
God for all that he has done for you. May he answer all
your Prayers!
Psalm 20:4-5

Love & Prayers

Kelly & Tom
Bryan, Sydney
Sam & Carl


Thursday, December 25, 2003 8:52 AM CST

"He is still found
by those who seek him"


"Through the tender mercy of our God;
whereby the Dayspring from on high hath visited us,
to give light to them that sit in darkness. . .
to guide our feet into the way of peace."
Luke 1:78,79 kjv


Wishes to all of you for a Very Blessed Christmas We are enjoying watching the kids go through their stockings, and play with their new toys:) Sam & Carl are both eating a Huge apple that Santa left them!!! along with a Huge Orange, Peanuts, candy and all a new sled:) They are very Happy, and excited to open presents from each other, after Bryan gets here later this morning.

Yesterday we enjoyed some time with Grandma & Grandpa Greer, and My sister Holly & her family. We went to Church and had a very unique experience of sitting behind the choir in the church loft, inbetween a Huge pipe organ:) We sure experienced the music from a different perspective!!

We spent the evening with the Robinson family at Auntie Janets, and enjoyed good food and company!!! The boys are a little bit more spoiled than they were before;) We decided to pack up and head home, as it was getting pretty late, and we wanted to be sure the little ones were tucked in bed so that Santa could make an appearance!!!

We were driving home, coming up county rd 2 towards our farm. The little boys were in the back seat chattering Happily, as Tom Sydney and I were in the middle of another conversation. To my surprise, I spotted a *Shooting Star* up in the sky as I was glancing up at the beautiful night sky. I said, "I think just saw a shooting star?" to my delight, Tom said "I did too!!" and Sydney said "Me too!!!" It was Sooo amazing that all three of us saw it together!!! Usually on a rare occasion one person will think they saw such a site, but never before has three of us at the same time saw the same wonderment!!!! I told everyone then, "We must make a silent wish upon that star" And we all did!!!!

These days, we have all been Praying for any sign. . . any sign of *HOPE*. . . . . .



"He is still found
by those who seek him"



Thank you all for your Fervent Prayer, we feel so much comfort, and know that every one is being heard. Thank you for your notes, emails, cards, phone calls!!! GIFTS!!!! Thank you Pop for the adorable shirt you sent for Carl!!! It was waiting at our home when we got back from church last night:) Carl took off the shirt he was wearing, and we put his new "ORANGE" shirt on!!!! He looked so Cute:)

God Bless all of you on this Beautiful Day, may you all find peace and Happiness wherever you are, and whatever you are doing!!! May God's Love find you this Christmas

Love & Prayers

Tom & Kelly
Bryan, Sydney
Sam & Carl


Monday, December 22, 2003 7:14 PM CST

Good Evening to All!!!

Happy Belated Birthday to Mandi Robinson!!!! December 17th!!!! We Celebrated with Matt & Mandi last Saturday night!!! It was a Great Party, and we had lots of fun!!!

Happy Birthday to Nick McVenes today December 22nd!!! Nickie broke a wrist sledding a couple of days ago:( Hope you are mending well, and Having a Great Birthday anyway!!!!


A special Thank you to Uncle Denny for borrowing us a monitor, and for Sweet Jenny for bringing it over today!!! It is good to be able to get back into my email, and to download photo's again!!!

New Photo's added tonight:)

We have been busy here on the home front, getting ready for Christmas, and making plans for the next couple of weeks coming up!!! Carl will be turning *4* on December 28th!!! We are heading to Rochester early, (He starts round 2 of chemo on the 29th) We are planning a Birthday Party at the Hotel on the 27th, and expecting many of our family to join us for the Celebration!!! We are looking So forward to a fun filled day for everybody!!! Carl is excited to be going swimming again, and can't wait for his sister, brothers and all of his cousins to be there with him!!! Carl has asked for a "BIG ORANGE CAKE" so he will be getting just that!!!!

Carl will be having his second round of Iriontecan starting on the 29th. We are Praying very hard that this chemo is holding Carl until we can get him to Philadelphia, in February or March, as soon as there is a spot open for him to get in. Since he started the first round, we have heard no complaints of any pain, or seen any signs of fatigue. In fact we have only seen a Healthy looking, Energetic, Busy, Active, sometimes naughty:) (almost 4 yr old) normal little boy!!! We are So Happy he is feeling so good, it almost makes us forget that he has truly relapsed, and has NB cells circulating in his body again. We are able to carry on normal family Holiday festivities, and it feels so Wonderful to spend time together with our family and friends at home!!! We have so much to be Thankful for, we could never begin to count our many Blessings.

Prayer Requests ~

For Carl, that he continues to feel as well as he has, and for the NB to remain stable and possibly be reduced from these chemo treatments.

For all of the children everywhere, fighting NB and other forms of Cancer or other illness.

For Eric Fisher, he will be having surgery in Rochester on Decmeber 26th, for a safe, successful surgery, and a full, speedy recovery!!! ERIC'S PAGE

For our sweet niece Sara Robinson, as she has surgery on her knee tomorrow. Pray for an easy surgery, with a speedy recovery!!!

For Grandma Greer and Grandma Robinson at Wood Dale, that they both continue healing from their injuries, and feel peace and comfort this Holdiay Season!!


Past Reflections

I recall from the past all that
God has done for me. These
miracles of the past not only
lend encouragement to me,
but my many friends also give
me encouragement that God
will hear my present pleas. I
know he comes to me during
this time of suffering.

Emilie Barnes

In my troubles I pled with God
to help me and he did!
Psalm 120:1

Love & Prayers

Kelly & Family



Saturday, December 20, 2003 10:04 AM CST

Good Morning to Everyone this Saturday Morning!!!

I can't believe it is already Dec 20th, just 4 more days until Christmas Eve:) WOW once again here we are, a couple of days til Christmas, shopping and wrapping left to do, and no Christmas cards in the mail:( Oh well why would this year be any different? We actually got most of our shopping done last night, while the boys went to Auntie Janets and also spent the night there:) We hope to tie up loose ends by today!!! The kids are soooo EXCITED for Christmas, and we are also feeling their Joy as they wait in anticipation for the Happiest day of the year!!! Today Santa will be making an appearance at the Community Center. The Schult employees children will be visiting with Santa there:) Since we have not brought our kids to see Santa anywhere yet, my sister Holly has offered to let our kids join their little ones to see SANTA today!!!

A couple of days ago, Troy Krause phoned from the Gazette. He asked if he could come over and talk to Carl and me as they would like to do a story on Carl. Each year Rick Peterson picks someone to be "Person of the year" and this year Carl was the little chosen guy with the Honnor of that title!!! I feel very Humbled and Honnored myself, that Carl was considered and chosen for this year. Troy came over yesterday morning, and was greeted by these two wild, out of control monkeys. I was totally mortified by their obnoxious behavior:( I know that Troy has a bunch of kids himself, so hopefully he wasn't too offended by these two little monsters:) Anyway I will let you know when the story comes out, Carl surly has had one very jam packed year, with everything he has encountered, and endured. It has been a year with just as much Joy, as it has been with all of the bad.

With Carl, we Celebrated "Cancer Free in 2003" well for a little while anyway:) We still have many of Carl's buttons laying around on dressers, and shelves, it often brings on the tears as I recall how very Happy we all were as we joined together for the 2003, Relay for Life!!! We did have a piece of Happiness...... however short lived. It was well worth all the Celebration we felt then....... we will always hold that dear to our hearts as Carl was, and always will be our HERO!!!! And I think we will feel even more motiviated to "Fight for a Cure"!!!! We were so blessed to be able to connect with our NY relatives this past year:) One of the many Blessings we were given!! We were able to see beautiful country we probably never would have seen!! We met so many wonderful people, both strangers, and other families going through this same war with their child, and we have been blessed with all of you!!!!! Thank you for never giving up on us!!! Mostly we Thank You for your steadfast Prayer for Carl's complete healing!!! We Love You ALL!!!!

Thank You for checking in:) I will try to add some new pictures later, our monitor blew out on us, so we have to go over and borrow one from Uncle Denna's. (Uncle Denny heeehee) It is kind of funny we have a Tomma and a Denna:)
I have been using the laptop for a few days until we get a monitor plugged back in:)

Have a Beautiful day in the Lord, may Peace and Happiness find you whatever you may be doing!!! God Bless

Faithful Friends ~

Father God, thank you for
the springs of friends who
stand beside me in all my
situations. They are always
there when I need them to
listen, laugh, and cry. They
are special to my life. May
they realize what their
friendship means to
me Amen.

Emilie Barnes.

But he......shall
be refreshed from springs along the way.
Psalm 110:7

Love & Prayers

Kelly & Tom
& Family


Wednesday, December 17, 2003 7:07 PM CST


Thursday Noon update!!!

Carl is back to his normal self:) He woke up this morning feeling very well!!! No fever, or diahrrea since yesterday!!!! We do think Carl just had a little flu, because Tom and I both are taking our turn:( I am just glad that Carl is feeling better, and nothing serious to worry about!!!

I just finished talking to Dr. Maris in Philly, about the treatments for Carl there at CHOP. They have a date tentatively scheduled for Feb 10th, for the single infusion. Dr. Maris recommends that Carl be treated with the Double rapid infusion, because they think it may be more effective. He would not be able to get in until March for this study, and if we agreed to this protocol, Carl would need to be in Philly for about 8 weeks for all of the work ups, and testing involved. The single protocol would only involve about 1 week, and Carl would have all of his pre-work up and post-work up done here in Mn. So we have just left it open at this point, we are going to try to get him on the double study, and he may possibly get in sooner? It really sounds like the Dr. would recommend the double, as with the single, Carl would very likely need a second infusion later anyway? There has only been a hand full of kids in the world that have done the double, so it is new, but they feel very promising!

Please keep Carl in your Prayers that he holds out, until we get him to Philly. If you could see him today, you would think there was nothing wrong with this kid:) He is so Happy, and full of Energy:) I think I will go mooch him up right now!!!!!

Love You all!!!

Kelly
**************************************************************



Good Evening this Wednesday to everyone!!!!

Thank You all for checking in on Carl, and for lifting us up in Prayer so Strongly the past couple of weeks!! We don't know what we would do without all of the Love you continue to show for our family!!! God Bless you all

Carl has received a couple of gifts in the mail, we are getting wonderful Christmas cards daily:) And last night a delivery came from a very special group "We Care" from Morgan!!! several boxes with food, and great treats for all of the kids arrived as a most appreciated surprise!!! What a Wonderful feeling to know that so many people care, and want to do something from their hearts!! We have been more than touched by your Loving kindness!!!!

Today I brought Carl to the Redwood Hospital to have blood drawn to check his counts, and to have his line cultured for a possible infection, as he has been running a high temp the past 24 hours. Carl has been having diahrrea, and tummy pains:( We are not sure if this is from last weeks chemo? or if he just has the flu? Dr. Olson phoned Mayo to report Carl's condition. Dr. Arndt spoke to him and advised that Carl should have an IV Antibiotic in case of a line infection, and that he should be seen again tomorrow. She also advised he should be taking Imodium every three hours until his diahrrea stops for 12 hours straight. So we are on a Tylenol, Imodium schedule, and Praying that this will pass in a day or so.

Still no word back from Dr. Maris in Philly?? In my last email to him, I inquired about Tom and I flying out there to consult with him, and to have our many questions answered, I told him we would be willing to do that, as it would probably be much easier to just make an appt. and sit down and visit with him about the decision we have to make with Carl's treatment, and which MIBG study would be the best for Carl? We just want to make the right decision after we understand all of the facts. The hard part is that we feel such a sense of urgency to do something right now!!!! When Carl was first diagnosed, we started chemo within a few days and we hit it hard. We are doing this other chemo right now for the mean time, but it doesn't feel the same. We must remind ourselves daily, sometimes hourly, that God is watching over Carl!!

Have a nice Evening everyone!!! We heard it may snow again tonight, and could be blizzard conditions again:( The kids are hoping for another snow day:) We shall see;)

Prayer Requests ~

For Carl, that he feels better soon, and that the chemo he is getting will keep his NB stable until we get him to his next treatment at CHOP.

For all of the children everywhere battling Cancer and other illness, that they may feel Love and Peace during this Holy Christmas Season.

For Tim and Amy Nesburg and Family, as they lost Amy's Mom to Cancer a few days ago.

Thank You for keeping us in your Toughts and Prayers!!

Jesus said: "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."
John 16:33

Love and Peace

Kelly & Tom
& Family


Tuesday, December 16, 2003 8:43 AM CST

Tuesday Morning, Cold, Blowing Snow, No School!!!!!

The kids are thrilled to be home today, as I'm sure the teachers are enjoying a break as well:) We are always Thankful they call the day off, before we get everyone ready, and out the door. The kids are watching cartoons and playing with Pika:)

Our weekend was very nice!!! We enjoyed seeing all our family that made it home for Grandma's Birthday, and for Matt & Mandi's Birthday party:) We did get to sled for awhile on Sunday, but not with our full crew, and the hill was not in it's best form (It should be now with this new snow) We will have to try this again when more of the Robinson's are able to join in!!!

Today I was to bring Carl into the Hospital to have his blood drawn to check his counts. I will wait until tomorrow, when the traveling is much easier. He seems to be feeling good, except for a little diarrhea that started this morning:( Which is one of the side effects from the chemo. One other complaint has been "My legs feel cold inside" ??? It could be from low counts???

We are still waiting to find out exactly when Carl can get in to CHOP for the MIBG treatment. Dr. Maris emailed me yesterday and said that he still needed to get some things together, such as Carl's stem cell information. He said for the Phase I trial that we were considering, Carl would probably not get in until March. With the Phase II he would possibly get in, in early February. We started out leaning towards the Phase I, but after more thought and consideration, we are now thinking more seriously about the Phase II, single dose treatment. He may get by without using any stem cells for rescue. With the single, he would be allowed up to two more treatments if needed. We are not sure about the dosing for the Phase I, but with the Phase II, it has already been tested and tried. I hope to talk to the Dr. there soon, and get some more information about the treatments and his opinion for Carl.

We are trying hard to keep our spirits up, for all of the kids, during this most difficult time of year. We are feeling the stress of the unknown of what will happen in the weeks to come, and the pain of trying to make this a most Special Holiday... always with the thought that this may be our last Christmas with Carl. If only this would have happend a couple of months later...Could anything really make this seem easier???

We are still filled with Hope, and we will not give up our Faith, we just know that God's will is what always prevails, The master plan is in His hands, and we must believe that he is in control of everything, we must put our Faith and Trust in God for only he knows our future.

Please Pray for Carl that his disease keeps stable until we can get him to the next treatment at CHOP.

Please Pray for all the children everywhere fighting this common war with Cancer, and for all the parents who have lost their precious Angels, and miss them so much.

I will reveal these truths to you so that you can describe these glorious deeds of Jehovah to your children, and tell them about the mighty miracles he did.
Psalm 78:4

Love & Prayers

Kelly


Saturday, December 13, 2003 8:05 AM CST

HAPPY BIRTHDAY TO ~ Grandma Phyllis Robinson!!!!! We are going to Celebrate with Grandma at Woodale this afternoon:) She will enjoy all of the company of her family today!!!! Grandma is doing pretty good with her hip, she is able to put some weight on it now to help with transfers. Please keep Grandma in your Prayers as she continues to heal.

Yesterday when we got home, we unloaded the car, then came in the house. We noticed there were a couple of messages on the answering machine so I went to play them:) To Carl's Surprise, was a message from Bob the Builder!!!!! He tallked to Carl and chuckled, it was such a Joy to watch Carl's face as he instantly recognized Bobs voice speaking to him!!!! Then Farmer Pickles was in the background, and wanted to talk to Carl too, but just about then the two got cut off:( But they called back again, and left a second message for Carl!!!! Both Bob and Farmer Pickles talked some more to Carl, They told him they were sending Loads of Love!!!!! What a very Special Surprise to come home to, THANKS SO MUCH to Bob the Builder & Farmer Pickles, you both Brightened Carl's day very Much!!!!!

It is good to be back home, and we all slept much better last night!!! We are getting ready to enjoy the weekend with family coming home, Grandma's Birthday Party, our Church Christmas Program, and then a sledding party tomorrow!!!! Carl is feeling so Good, he is so Happy to be back home too!!! He enjoyed showing Carl all of the things he brought back from Rochester:)

Wishes to all for a Beautiful Day!!!!!

Let all who take refuge in you be glad; let them ever sing for joy. Spread your protection over them, that those who love your name may rejoice in you. For surely, O Lord, you bless the righteous: you surround them with your favor as with a shield.
Psalm 5:11-12

Love & Prayers

Kelly & Tom

Bryan, Sydney
Sam & Carl


Friday, December 12, 2003 3:28 AM CST

Happy Friday Everyone!!!!!

Yes I know it is only 3:28am, I have this insomnia thing going on again:( I am not alone with this, I just got an email from our sweet niece Jenny Robinson:) I sent a reply right back asking "What are you doing up this late?" or is it this early?? At any rate I don't feel alone sitting here typing, I know of at least one other person that is joining me with probably "insomnia"... Get to bed Jen!!!!!!

We are almost done with our first week of chemo!!! Carl has been doing Fantastic, and feeling Excellent!!! No pains to speak of, his legs have not bothered him at all, and he has not needed tylenol since we left home!!! He is full of energy, and looks so good:) His skin is finally clearing up from the Accutane abuse. I did notice tonight however that his eyebrows look a bit thiner? I can't tell for sure without a second opinion, so I will have to get Tomma to look him over when we get home?? I didn't think he would loose any hair from this chemo, but maybe he will?? The poor little guy just got it back, I sure hope it stays for awhile longer:)

We have enjoyed some Great company the past couple of days!!! On Wednesday night, Stacey Hildebrandt a sweetheart that we met last year at the "Donald House" and Mayo, and Stacey is the VP of Camp Jornada, a camp for kids with Cancer:) shared the evening with us!!! Stacey Loves all of our kids, and her Love comes straight from the bottom of her Heart!!!! We joined her to watch her son play Hockey here in Rochester for a little while:) That was really fun, I have not watched Hockey for a looonggg time. We enjoyed supper at Perkins, and then brought Carl back to the Hotel to go swimming for awhile!!! He Loved It sooo Much!!! Stacey's boyfriend Rod, with his son Joe joined us too, and Carl had such a ball in the pool!!!! It was so Fun to watch him be so Happy and Enjoy himself to the fullest!!! Thank You Stacey for Everything, We Love you so Much!!!!!!!! Stacey has a caring bridge site for Camp Jornada to check it out go to JORNADA ROCKS

Then Thursday night, we met Sara Gosse from Rochester (One of Carl's faithful journey follower's) with her son Tyson, and his friend Tony!!! We brought Carl swimming again, and he LOVED having these boys fool around with him in the pool!!! It sure helped fill a void in Carl's heart, as he has been missing his brothers and sissy just terribly. The boys were so Sweet, I think they had just as much fun as Carl did, and Sara and I enjoyed visiting, and watching these boys get Crazy and entertain Carl!!! We all went to the Hotel restaurant for supper, Carl was just as much a Ham at the supper table, what a characture he can be:) It was a very Fun evening!!!!! Thank You Sara, for coming over, and bringing the guys, We Enjoyed it So Much!!!!!!

In the morning, Carl will have his last treatment early, they have him scheduled for 7:15am So we will get done early in the morning and be able to start back home!!!! We will be meeting Bob in Mankato to pick up Bryan, and bring him home for the weekend with us too!!!! We are looking forward to a Great Weekend!!! We are Celebrating Matt & Mandi's Birthdays and we are going to try to organize a sledding party in Beaver Falls Park, if it is not too cold on Saturday:) We are Soooo excited to see everyone that is coming home!!!!

Wishes to all for a Wonderful Friday!!!!!!

Thank you for your Awesome Prayer Power!!!!! Keep the Prayers coming STRONG!!!!!! Pray for Carl's complete Healing.... Pray for Carl's Miracle.....Christmas is the Season for Miracles+

Remember in Prayer, all of our friends in this common battle with NB, and other cancers.

Thank You all and God Bless

Love & Prayers

Kelly & Carl


Wednesday, December 10, 2003 0:43 AM CST

Hello this......Wednesday Morning:)

I was asleep, but woke up and decided to journal, maybe that will help me get back to sleep. Maybe I will bore myself back to sleep:)

Tuesday was another Great Day for Carl!!! We went to Denny's for breakfast. The waitress brought his meal, set it down in front of him, and that familiar look of "Im gonna puke" came across his face:( I ran him to the bathroom, all the other customers probably wondered what the heck was going on? Carl recovered from this little spell as soon as we got into the bathroom, and never did get sick. We returned to our table, and he ate a very good breakfast!!! This was the only sign of chemo working in his body to speak of. Otherwise he was Happy, Energetic, Goofy, Busy, and a real Chatterbox:)

We got to his treatment about 2:00, and got started right away. The nurses discovered that the chemo should actually run over an hour and not 30 minutes like it did the first day. (oops) So Carl was hooked up for a while longer than expected, but heck we don't have anything else to do, and this is certainly a breeze compared to antibodies, so I would be willing to sit there and Play for 8 hours if need be!!! Carl is one of very few children in the outpatient chemo area, so he gets alot of attention:) It is Amazing that the staff there remembered him from only a couple of other times he was in the outpatient area back when they were on another floor. He needed to go there I think only two or three times, to get a Vincristine push as part of his protocol for several of the chemo rounds. But they all were excited to hear he was coming for a visit when they noticed his name on the schedule for Monday:)

FAITH AND HOPE


Yes this is what we are living, eating and breathing these days!!! Prayer has more meaning than it ever did, when I read about all the Prayer that is being offered up for Carl everywhere, I feel an Incredible Engery and these two words Faith and Hope come alive to me, they are so evident in our lives, now more than ever!!!

I have received numerous emails with Prayer chains going out everywhere!!! I read your notes and offers of Prayer, and I feel the HOPE more than ever!!!! I feel with all of our Prayer, Carl's Miricle will be done, it will Happen, I can feel the Presence of this positive energy and our Prayer is getting through loud and clear!!!!

I heard that our Dear Patti from NY and her sister Donna have tied an Orange Ribbon around trees in their front yards:) HOW COOL IS THAT!!!! I think we will join them in that, and I know of a few trees at home that would look lovely with BIG "ORANGE" Ribbons around them:) Never mind that the colors should be RED and GREEN for the Christmas Season, Orange is our Color of Choice for Carl!!!!! Thank you Patti & Donna!!!! Please tell Pop Hello from Carl, We Love you all too!!!!

Carl and I went shopping tonight after his treatment. We looked for a Christian Book & gift store that used to be in the Galleria, but has closed. We did find another down the street and had a Wonderful time browsing and checking out all of the Beautiful things inside. We got Carl a very sweet childs Rosary. It is made of large colorful wooden beads. Tonight we Prayed the Rosary together, and he sat right next to me, listening, and following right along with each bead, it was very Precious to spend this time with him.

PRAY PRAY PRAY ...... PRAYER IS POWERFUL!!!!! I will not listen to anyone tell me there is No hope, we will continue to keep our FAITH AND HOPE alive, as long as there is life!!!

Have a Great Day today!!!! We are going to have a Wonderful day today, I asked the nurse about de-accessing Carl's port for the last couple of days so that he can swim!!! We can do that, and he is going to have some fun!!!

Until Next time, Please keep the Faith and Prayer Strong... if we believe, it can be done!!! Faith can move Mountains!!!

Thank you and GOD BLESS

Love & Prayers

Kelly & Family


Monday, December 8, 2003 8:22 PM CST

Good Evening to All!!!

We are settled in to a Hotel, as the "Donald House" still has quite a waiting list, and the new addition is not completly open yet:( Maybe in a day or so!!

We arrived in Rochester by 9:30am, and took Carl right to the lab area to get his port accessed, and to have blood draws done. We then went upstairs to 9E and discovered that we were scheduled for 1:30 with the Dr. and then at 4:15 to start chemo. So we got the heck out of the clinic for awhile:)

Tom had wanted to look up an old friend Greg, that he used to work with way back when:) At Holiday in Redwood. Greg is now a Priest "Father Greg" at St. Bernard's Catholic Church in Stewartville, actually he has been a Priest for about 13 years now, and it has been close to 20? since Tom has seen Greg. We had lunch together in town at a very adorable Cafe. Wonderful Food!!! We enjoyed our visit very much!!! It was alot of Fun, Carl ate very good, and helped himself to a hand full of suckers he spotted in a basket by the cash register on the way out the door:)

We got back to Mayo for the Dr. Appt. We saw Dr. Rodriguez today. She started out by giving us the same old schpiel that we already heard last week "There is NO cure" Well later after our Appt. I was looking over some reading material, and pamplets that they had lined up in a cancer care area in the waiting room. I picked up a brochure that was titled ~ "You have the RIGHT to Hope" !!!!!!!!!!! To me that says it all, and that is all that matters to us right now is HOPE, it has nothing to do with denial, but everything to do with HOPE!!!!!! It is a very Horrible thought, and I would never wish this on anyone, but Tom and I have often wondered what some of these Dr.s would do if this were their child.

Carl finished his first day of chemo. It was a 30 minute drip. He will complete 5 days, then we will go home on Friday. We will check his blood counts locally, then return on the 29th of December for the next round. It looks like we will be spending New Years in Rochester again. I will be emailing all you Robinson's to see who all would like to celebrate with us this year again!!! This Hotel we are at is Great, it has a neat pool, with a small childrens water play area, then a really cool twisting slide for the older kids. Carl can't swim this week because of his port, but we will make sure he is able to if we are here for New Years!!!

So far so good, no nausea yet... Uncle Chuck drove down to pick up Tom, so we all went out to Applebees for supper. Carl was excited to have Uncle Chuck with us, and insisted on sitting next to him!!! Carl did not eat very well, but he had been eating crackers, and cookies during his treatment at the clinic not too long before that. He is tucked in bed now, and watching Yogies Christmas on TV:) He was crying a little while ago, he misses Daddy, & Uncle Chuck:( and he wants to go home:( I told Carl, Maybe tomorrow we will get in the "Donald House" and we will have lots of fun there. Otherwise I just know this little boy would Love a trip to the Apache Mall to ride on that fire truck he enjoys so well:)

Thank You everyone for stopping by, and for all of your Steady Powerful Prayer!!!! We feel so Stong and we know it is from all the Prayer being sent up for Carl and our family!!!! We Love You all!!!

God Bless+

Love & Prayers

Kelly


Saturday, December 6, 2003 9:20 AM CST

Good Morning this Saturday!!!

HAPPY BIRTHDAY TO ~ Matt Robinson (Denny's oldest son, and the oldest Robinson Grandson ~ Carl is the youngest:)

HAPPY BIRTHDAY TO ~ Keith Hauck ~ Our cousin in NY (Long Island)

Both Birthdays are today December 6th!!! We Love you guys and hope you have a Great Day!! I know we will be Celebrating with Matt & Mandi on the 13th, we will be ready for a HUGE Party, we can't wait to cut loose!! We hope Keith has a Good Day, and that your not too buried in snow out there, we heard you got a snow storm:( Take Care and Love to all of you out there on the East Coast!!!

Thank You everybody for all of your Love and Kindness, we have been receiving an outpour of Compassion from everywhere!!! Your notes of encouragement have lifted us up every time we log on to Carl's site!! Last night Jenny Bloedow brought a Wonderful Supper of "Cowboy Chow" We all Loved it, even though we were all a little gassey:) Thanks Everyone for lifting our Spirits up!!! If it were for Prayer alone, Carl would be cured!!! You Prayer Warriors are AWESOME!!!!

The plan right now is to bring Carl to Mayo on Monday to begin a chemo to hold him at bay until we can get in to CHOP for the MIBG treatment. Dr. Maris said they would be able to treat Carl in January or February. We will get him on this chemo in the mean time, and PRAY that his NB has not taken off too much and that he keeps stable until we get him in to CHOP. Carl was feeling better yesterday, only one dose of tylenol for pain at bedtime (THE POWER OF PRAYER) He was busy with Sam yesterday, playing outside, running around the house, riding his little bike around the house, entertaining Jenny Bloedow while she was over, and it was probably 11:00pm before these wild kids settled down to finally get to bed. Way too late for any of them to be up!!! But Carl has had very good Energy levels, he has been a trooper from the beginning, and he continues to Prove this as he marches on in this battle!!

All of the Robinson family would like to wish John Frank and his Wonderful Loving family a most Blessed Weekend as John comes home from the Hospital for the first time!!! We were filled with Joy to learn that John would be coming home this weekend, it won't be long and he will be home for good!!! GOD Bless the Frank Family!!! You are in our Thoughts and Prayers Daily!!!

Prayer Requests~ For Carl's cancer to remain stable as we wait to get to his next treatment at CHOP.

For all of our Friends fighting cancer and other illness that they may all feel the healing comfort from our Lord, and may they find Peace throughout this Holiday Season, and be filled with HOPE for the coming NEW YEAR!!!

God Bless All of You

To know someone here and there whom we
accord with who is living on with us even in silence-
this makes our earthly ball a people garden.
GOETHE

Life begets life. Energy creates energy.
It is by spending oneself that we become rich.
-SARAH BERNHARDT

The best way to cheer yourself up
is to cheer somebody else up
-MARK TWAIN

God Loves a cheerful giver.
2 CORINTHIANS 9:7

Love & Prayers

Kelly & Tom
& Family


Friday, December 5, 2003 6:34 AM CST

Good Morning and Happy Friday to all!!!

The boys are still sleeping, Sydney is up singing "Santa Clause is coming to town" to Pika:) and there is a fresh blanket of snow on the ground. I bet you can guess where Tom is this morning ~ out plowing:) I don't think we got too much snow, just a couple of inches maybe. It always makes things look so fresh though, even though we start to hate it by January.

We are doing well, we are trying to keep positive about life and Carl's relapse. We have periods of being up, but then reality creeps back into the picture and the sorrow can take over once again. Carl feels pretty good, but the reminders of this terrible disease are becoming very evident. I gave Carl Tylenol several times yesterday to help his leg pain.

We talked to Sydney last night and laid it on the line. We told her that Carl's disease is not good. We told her that we are still going to try fighting this with a new treatment, and we may be spending some time away from home again. She understands very well because we have read about many other children that have lost their battle. We have read about other children relapsing, and then later finding out that they earned their Angel wings. We told Sydney that when the time came that there was noting we could do to save Carl any longer....we would tell her. But until that time comes, she should not worry about it. We also talked to her about how Carl is beginning to not feel good, and he is showing some pain in his legs, and that we need to start being extra gentle with Carl and try to avoid rough play that could hurt him. The three of the kids here can get pretty rough sometimes, and just last night they were three little monkeys jumpin on the beds:)

Yesterday I spoke to Dr. Kushner on the phone. He agreed with us that the MIBG treatment would be a good plan. We could follow that up later with the Fenretinide or possibly something else. He advised that Carl will need to start a chemo called Irinotecan (low dose, low side effects) to keep things at bay until we can get into CHOP. There may be a waiting list. If we can get in early, then we would not have to do the chemo. I am not sure where we would do the infusions, possibly Mayo outpatient. I believe it is a three hour drip, 5 days for two weeks.

I emailed Dr. Maris yesterday and he will be in touch later today. I will then have more of an Idea about what will be happening in the next weeks to come. What this MIBG treatment is about, is basically the child is injected with radioactive material (the same isotope that is used to highlight on a MIBG scan to show the cancer spots) this material goes to the spots and kills the cancer there. The childs blood counts will drop just like in transplant, they may require transfusions, and a stem cell rescue is involved (Carl has a supply of stem cells at MSKCC) The worst part of the whole procedure is that the child is radioactive for a period of time, everything that comes in contact with the child gets thrown away. After a safe level is reached (radioactivity) then the child can go home. One of the studies is a High Dose Rapid treatment. Our little friend Christi Thomas is at CHOP right now, and has been treating on this study. I have received so much information from Angela, Christi's mom, and from others that have been to CHOP and had this and similar treatments there. It is promissing, and may get Carl into remission again!!! we have to give it a try!!!!

I will keep you posted, Thank you for your continued support, your notes are a huge lift for us, and your Prayers are being felt, we know the Lord is watchin over us!! Carl is starting a new chapter of his journey, a part of this very Big plan that he was chosen for!!!

Though I walk in the midst of trouble, you preserve my life; you stretch out your hand against the anger of my foes, with your right hand you save me. The Lord will fulfill his purpose for me.
Psalm 138:7-8

God Bless all of you

Kelly & Tom
& Family


Wednesday, December 3, 2003 10:49 PM CST


Thursday Morning Update:

Thank you all for continuing to check in on Carl and our Journey!!

I just wanted to do a quick update, and tell you how good we feel this morning!!! We have received some very Wonderful Advice from many of our NB family!!! And we feel confident that we should March on in this battle!!!

We have made the decision to not do the Fenretinide study at this point, but to save this for possibly down the road as an option.

I have emailed Dr. Kushner in NY, and Dr. Maris at CHOP for more information and options. We still do not know what we will be doing, but we feel good in that we are getting some good hopeful Advice from other families that know!!!

Please keep the Prayers coming, and I will update if anything new arises!!!

God Bless

Kelly
******************************************************************

Hello to all our dear Family and Friends

Thank you all for your notes, emails, phone calls, Prayers offered up for Carl and our family!!! You are all so Awesome, We are So Blessed to have your Love and Support holding us up right now. This is more difficult than anything we have ever dealt with, and we sure do need all of you right now!!! We Love You all!!!! Thank you for being there for us, we truly feel the Lords comfort!!

We are back home, it is about 11:00pm Wednesday night. I am not sure where to begin, but I will try.

Carl had labs drawn this morning then we went to CT's and spent alost three and a half hours there. Between waiting, then fooling around to get the scans done, then waiting for the Dr. to read them, then they had to repeat a head view, because something was showing up that wasn't there before.

The CT showed a NB spot on Carl's right jaw bone. The scan was done a second time to get a better look at it. It did reveal a spot that was new, from the last time. Tom and I were just discussing the last time Carl had a head CT was February, right before we left for NY. (done in Willmar)

Well we missed the hearing screening, due to the CT's taking so long. So we went right to the Peds. Onc Appt. We met with Dr. Khan and firstly she explained the reports from NY. She described the Metastases that had been highlighted on the MIBG scan. Which was quite a bit more than we realized. He has spots on both humerus, both iliac wings, both femora, and the left tibia. The bone marrow Aspirations indicated NB in one of the biopsies.

Nothing has spread to his organs, head, orbits (eyes) ~ it seems all of the areas we radiated are ok.

So what to do now????? We don't know!!!!!!

We were offered a Phase II study of an agent called Fenretinide. This is in the same family as Accutane, and works similar to kill cancer cells. This would not be curative, and we were informed that there is nothing available that is curative for Carl.

She said that using Chemotherapy would not be a good idea, since he relapsed after all that he has already been through. She basically said that this treatment would help prolong his life, and we it would be good to concentrate on the quality of life at this point. There is no cure!!!

We already know there is no cure, that is why Neuroblastoma is such a Horrible type of cancer. We have only hoped that he would be one of the 30 kids out of 100 that would make it to remission, and prove long term survival.

So what do we do now???? We don't really know, all we know is that Carl's situation is more bleek than we originally thought two days ago. We don't know all of the treatment options, as there is more out there, and we do know it is possible for a relapsed child to make it to remission again.
I have not talked in depth to Dr. K. about options, only briefly in emails. Tom and I thought about taking a trip back to NY, to sit down and talk to him, and try to get some solid advice. We know the Dr. can't make our decision, but we would appreciate something that sounds hopeful, if there is anything?

Right now I am researching, and seeking advice from our NB family. One of the things Tom and I thought was to check into taking Carl to CHOP (Childrens Hospital of Philly) A Dr. Maris is the one there that has so much experience with NB, and relapse. CHOP has a MIGB therapy that we have heard about from many other families that are in this same boat. We have always thought of it as a back up/last resort if this time ever came. I don't know alot of details, but that is what I hope to find out.

We have return appts set up for two weeks, in case we decide to go with the Mayo study. He can't start the F trial until he is off the accutane for two weeks. So this will give us some time to do some research. Carl still has his G-tube, the Dr. thought it may come in handy later for nutrition if we do any further treatments, and for getting meds in him if needed, so he is still with Mic-key button.

Our heads are swimming, and we feel more confused than ever. We were on the road to a normal life, Carl was doing so good, and we felt for the first time in a very long time We had a plan. We knew what we were doing, life was good and felt promising. Here we are back to square one, only worse. We are coming upon Christmas again, and feel like our whole lives have just gone to Hell. We want Carl to have quality if his days will be very limited here on earth. But we are not ready to give up, we don't want to feel like there was something we could have tried that maybe would have worked.

Of course the thought that "There is nothing curative for Carl" keeps echoing in our heads.

Please continue to Pray for Carl, Pray specifically that the cancer that has started growing and spreading in his body, be stable and not spread further.

Please Pray for all of our friends with Children battling this monster, and other cancers for their complete healing.

God Bless all of you!!!


Thank you again for all of your Support, it means the world to Tom and I right now!!!!

Love & Prayers
Kelly


Monday, December 1, 2003 7:11 PM CST

Good Evening to all

It is with great sadness that I am updating with devestating news that we have feared we would one day be hearing. Dr. Kushner phoned tonight during supper, and he gave us Carl's test results. He has relapsed in his bone marrow, and legs. Tom and I will be taking Carl to Rochester on Wednesday for his appointments, and will meet with our Onc team there to discuss the new plan for treatment. Dr. Kushner has already consulted with Mayo, so they know about all of this. They have discussed a plan, and we will find that out soon.

The treatment of 3F8 Antibodies/GMCSF is now over for Carl. We also were instructed to discontinue the Accutane. Right now we feel devestated, sad, overwhelmed with the unknown. We are going to try to keep upbeat and Positive for Carl, he is running around Happy, and Playing with Sam, not even aware of what is going on in his little body. We will stay strong and we will make it!!! We did the first time, and we will again!! We know we can count on all of your Prayer lifting us up and giving us the strength to march on in this bloody war.

Thank you for all of your Love, support and Prayers

I will update after we know more about Carl's next treatment plan.

Love & Prayers

Kelly & Tom
& Family


Monday, December 1, 2003 11:17 AM CST

Good Morning to Everyone!!!

We hope you all had a Wonerful Weekend!!!

Ours was very nice, but went by much too quickly. We visited Grandma Phyllis yesterday in Mankato, and she will be coming home to Redwood today. She will spend a little while at Woodale for more healing and Rehabilitation. We hope and Pray that she will have a speedy recovery, and get back home soon!!

Today Carl will have his blood drawn at the Hospital, to be sent to NY for his HAMA test. He is doing so well, and is finished with his fifth round of Accutane!!! One more round to go, and he will be all done with the Accutane Yippieeee!!! His little face is so dry and cracked:( He hates when I try to put lotion on his cheeks and around his mouth:(

We will try to make it to Rochester for Carl's appointments this week. He is re-scheduled for Wednesday thru Friday. He will have CT scans, hearing screening, and then on Friday he will have his Mic-key button/g-tube removed. I think the weather report is good for this week, so we will keep our fingers crossed that we can get these appts. all done this time!!!

We still..... Have not heard any results from Carl's BMA'S and MIBG from two weeks ago:( I did email Dr. K. this morning and told him about our appts. at Mayo this week. It would be good to have the results before we go to Rochester on Wednesday!!

Sam is home today, so the two boys are busy with activity:) They found their tents from last year (Pooh, and Spiderman) so they have hauled them out, and have been playing in them ever since:) Sam got his from Santa last year. We spent Christmas in St. Mary's Hospital after Carl's surgery, so Santa made his yearly Robinson home visit to Carl's hospital room, and left the tent there for Sam:) He woke up in the morning on his little cot, and opened his eyes to the tent he had been dreaming about!!!

Wishes to all for a very nice Day!!!!

Prayer Requests ~

For Carl's scans/tests from NY and this week at Mayo to be clean and cancer free.

For all our friends everywhere battling cancer, and other illness.

For all of Carl's Grandparents during this Holiday Season.

Blessed are those whose strength is in you, who
have set their hearts on pilgrimage. They go from
strength to strength, till each appears
before God in Zion.
Psalm 84:5,7

Love & Prayers

Kelly & Tom
& Family


Friday, November 28, 2003 2:01 PM CST

Hello this Friday!!!!!

We Hope you all had a Wonderful Thanksgiving!!!!

Happy Birthday to my sister Holly Weilage!!!! Her Birthday was Yesterday, on Thanksving Day:) We got to see her and wished her a Happy Birthday!!! I wanted to post Holly's Birthday, since I didn't get a photo in the paper this year. So wish Holly a Happy 42nd Birthday Everyone whenever you see her!!!! I will work on another picture for next year:) heehheeeee ~ sorry girlie:)

We had a very nice dinner with Family at Uncle John & Auntie Sheila's home. It was so good to see, and visit with everyone that came. We did miss Grandma Phyllis though, and it was not the same without here there:( We all felt really bad when we heard that her dinner was tomato soup:( We drove down to Mankato on Wednesday evening, and stayed with Grandma for a little while. She was pretty tired, and still uncomfortable from her surgery that night before. We are planning on driving down either tonight or tomorrow to visit her again!!! She will be transfered to the Redwood Falls Hospital in the beginning of next week, Monday or Tuesday.

We spent some time with my parents at Woodale yesterday afternoon. Holly baked a couple of Pumpkin Pies to bring along. Mom is doing better, she had her Foley removed a week ago, and is much happier about that. Dad is doing well at home, and is making daily visits to the nursing home to spend time with Mom. It is hard when they are in two different places, and can't be together, especially during the holidays. It looks like both Grandmas will not be home for Christmas this year. Please keep Carl's Grandparents in your Prayers during this healing time, and throughout this Holiday Season.

I am waiting for Carl's schedule at Mayo, with his Appts. that we had to reschedule from this last week. We believe they will be this next week, Dec. 3rd, & 4th. I understand the Rochester "Donald House" has a waitng list of over 40 people right now, I can hardly believe that!!!! It looks like there will be "No room at the Inn" again this trip to Rochester. We may get to see Eric Fischer, as he will be at Mayo on the 4th too!!! We have not seen Eric since they were here in Redwood for the Relay for Life this summer. This time of year sure brings back thoughts and memories of all our friends we have come to know over this past year!!! We spent Thanksgiving, Christmas, Carl's Birthday, and New Years Eve last year at either St. Mary's Hospital, or the "Donald House" It became our second home for a long time. Even though we would have prefered to be at our own home, we sure had some good times just being together and Giving Thanks for all of our Many Blessings, it didn't even matter where we were, we just felt so Blessed!!!

Wishes to all of you for a Wonderful rest of the Weekend!!!

God Bless


Sing to the LORD with thanksgiving;
make melody to our God upon the lyre!
He covers the heavens with clouds,
he prepares the rain for the earth,
he makes the grass grow upon the hills.
Psalm 147:7-8 RSV

It all goes by so fast. . . . Oh earth, you're too wonderful
for anybody to realize you. . . .Do any human beings ever
realize life while they live it-every, every minute?
-THORNTON WILDER, OUR TOWN


Love to all

Kelly & Tom
& Family


Thursday, November 27, 2003 8:10 AM CST

HAPPY THANKSGIVING TO EVERYONE!!!

I have added some pictures of Thanksgiving last year, and Carl's fifth round of chemo in Novemeber. I get very choked up each time I reflect back on where we were a year ago, and how far we have come since....

We have so much to be Thankful For!!!!!


Be thankful for the least gift,
so shalt thou be meet to receive greater.
-Thomas A kempis

He who is plenteously provided for from
within needs but little without.
-GOETHE

May your Holiday be filled with many Blessings, wishes for a Beautiful Thanksgiving to You and Yours!!!

Whatever comes, let's be content withal:
Among God's blessings there is no one small.
-Robert Herrick




Love & Prayers

Kelly & Tom
Bryan, Sydney
Sam & Carl


Wednesday, November 26, 2003 12:04 AM CST

Good Afternoon!!!

Grandma Phyllis finally had her surgery last night about 10:00pm!!! There were so many emergencies the past couple of days, so she kept getting put back:( She is doing well, and will soon begin to stand putting weight on her good leg. We are planning on visiting Grandma tongight!!! Auntie Jean & Uncle Dave are stopping there too on their way home for Thanksgiving!!!

We are still waiting for test results from NY. I have decided to just wait, and not email back again. I really believe everything should be ok, If not, I should hope we would have heard from them by now. It is frustrating though, when we are expected to get there, put Carl through all that he endures to have these procedures on a timely basis, and then receive no response for all our efforts? We do trust and value MSKCC'S expertise with NB, but just feel frustrated in these situations. Tom and I have decided to start having all of Carl's scans and tests completed at Mayo beginning with the new year. Our insurance coverage will be changing January 1st.

We have such a mess of claims and charges that have still been unsettled from this past year. We cringe at the thought of starting a new year with Different Insurance benefits, a new group number, and claims processing differently than in the past, with so many outstanding issues still unresolved. As a former Blue Cross Customer Service Representative, I know all too well what will be happening!!! Sometimes I wish I could just fix everything, because I understand what is going on, but can't change a thing... only watch it happen!!! As long as Carl is doing as well as he is, we feel comfortable doing scans/tests at home. If anything should arise, we would have our NY Doctors to consult with and repeat anything questionable.

Carl's Medical Assistance will cover his Antibody Therapy in NY, so we hope to alleviate as many other charges as possible from going through our group plan. We are still working on getting claims settled from Carl's Transplant that happened in March. Not to mention all of the tests, and physician charges that are too numerous to count. It would sure make it easier if all providers, billed in the same manner. We think MSKCC has their own unique system that nobody can quite figure out??? I think I will have to spend a whole weekend sometime sorting through and trying to make sense of this past years mess of charges and payments. I could go on and on about Heatlh Insurance, so I had better get off the subject now!!!!!! LOL

This morning I called an old friend of mine Shellie!!! We visited for a long time, and it felt so good to talk to her again!!! It is so good to do those things that you think about and tell yourself "I will do that tomorrow" or next week!!! An old friend is such treasure of the Heart!!! I hope to spend this next year doing those things that I have thought about doing, and never got done, especiall where other people are concerned!!! It means so much to get a Thank You note sent out to someone that touched your heart, and made your day!!! To stop by and visit someone that would Love to have you stop for a few minutes and chat!! Or a phone call to a good friend you have not visited with for so long!!! It is a Great Feeling to Share of yourself!!

Thank You for keeping the Prayers coming for Carl and our family!!! We Love You all so much!!!!

God Bless+


THE ART OF ABUNDANCE

Abundance is . . . not how much I own but
how much I appreciate.

I am come that they might have life,
and that they might have it more abundantly.
John 10:10 KJV

Abundance is . . . a pink and lavender sunset sky.

Abundance is . . . the smell of freshly baked
chocolate chip cookies.

Abundance is . . . an unexpected phone call from a friend.



Love & Happiness

Kelly & Tom
& Family


Monday, November 24, 2003 1:26 PM CST

Good Afternoon!!!

I did receive an email back from Dr. Kushner yesterday, (Allison within minutes of your Prayer )

Carl's urine HVA is normal
MIBG and BMA'S still pending....
Immune funtion normal ~ tested for post transplant immune function (Carl can discontinue Bactrim)

Grandma Phyllis is stil waiting for surgery to repair her hip!!! She was put back several times yesterday and finally today at 2:00pm is the expected time for surgery. Please continue to keep Grandma in your Powerful Prayers for an event free surgery, and speedy recovery!!!

The boys are enjoying their time at home together today!!! Even though it is cold, it is very sunny:) They stayed outside for quite awhile this morning building an Igloo:)

Have a Great Day everyone!!!


THE ART OF ABUNDANCE

Slide down a snowy hillside on a sled or your backside. Roll in the grass on a dry sunny day. Take regular walks outdoors.

Abundance is. . .Store windows that
display the delights within.

Abundance is. . . the wind blowing through your hair.

Abundance is . . . zucchini!



love to All:)

Kelly & family


*****************************************************************



Kelly &




Hello this Monday Afternoon!!!

Carl and I are home, and will reschedule the Mayo appt.s in a couple of weeks, and hopefully the weather and roads will be much better for travel. I just talked to Karla, and I am so sorry we missed spending some time with them. She said that Jacobs appts. all went very good!! We may be able to meet this next time when we get rescheduled, as Jacob has some return appts. and it may fall at the same time!!! I am sorry we didn't get this all done, but there must be a reason, and we are glad we are safe and sound!!

I emailed Dr. Kushner this morning, and asked about Carl's MIBG, and BMA results from last week in NY. We are very surprised to have not heard from him yet, as he usually emails by Friday, and whenever we email him, we get a response within an hour if not sooner. Of course our minds are running rapid, with thoughts of bad news coming our way. We have heard that he only emails with good results, but will phone if there is something wrong. No matter how hard you try to be positive and surpress these thoughts, they surface and are always present like a sort of ache you live with that can be eased at times, but never really goes completely away.

The kids were hoping for a snow day today, and Sam really wanted it to be a B Kindergarten day instead of an A day. I told kids they have a very short week this week!!! Then they will have a very nice long Holiday Thanksgiving Weekend!!! We are all Excited for Thanksgiving, to be home together this year, and be able to spend some time with all of our Relatives that are coming home to share and Give Thanks for all of our Many Blessings!!!

We are Very Saddened about Grandma Phyllis and her accident. She is in good spirits, and is scheduled to have surgery on her hip today. I believe this is the same type of repair that was done on the other hip last year. Not a complete replacement, but a screw and plate type of fix. We are not sure how long she will be in the Hospital in Makato, but if this recovery is like her last one, we expect that she will be transfered to the Redwood Falls Hosp. for transition in a swing bed. Please continue to keep Grandma Phyllis in your Prayers for an easy recovery so we can have her back home soon!!!

Please remember in Prayer ~ All of our friends we have met along Carl's journey with Cancer. Many children fighting NB, and different Cancers, and the children living with other illenss. And for all the parents that live this life day to day, and have nothing but unconditional Love for their children.

Thank you for stopping by and offering your support, We appreciate all of your Prayers and Encouragement Always.

God Bless all of you

From a book I recieved as a gift from Holly:

ABUNDANCE

When in doubt, believe the best. Whether it is for your future or about the people you know, believing the best brings back the best. It's almost like sending a radio message out to the universe, "You can trust me to appreciate the good gifts you're sending!" A little seed of gratitude can one day grow into a crop of blessings.

Bless the LORD, O my soul; and all that is
within me, bless his Holy name!
Psalm 103:1


Love & Prayers

Kelly & Family


Saturday, November 22, 2003 7:12 PM CST

Good Morning to all

We are still home, and not sure about making the trip to Rochester.

Please Keep Grandma Phyllis in your Prayers, she fell this morning and has broke a hip. She is on her way to the Mankato Hospital. We will keep you posted on her stituation.

Thank you, and Love to all!

Kelly & Tom
& Family
*************************************************************





Good Evening
from Snowy Franklin!!!

It is kind of pretty, but not good driving weather:( Carl has appts. in Rochester on Monday, Tuesday and Wednesday. He is scheduled for CT scans, and a routine hearing screening. Wednesday is the day for his Mic-Key button to come out. We are watching the weather closely and will make a decision in the morning if we will attempt to make the trip. It is about a three hour drive. The weather reports are talking about six to ten inches on Sunday:( We may just have to reschedule everything for a better travel time, and stay home and snuggle up for the day.

Tom is getting to bed early, as he knows he will be getting up early to get his snowplow out for the first time. It has been out once already, during the NY trip, but this will be Tom's first snow for the year. I am hoping the storm poops out, and stops, I really wanted to get these appts. done and out of the way. We were going to meet a friend of mine Karla Schroeder with her little boy Jacob. We were planning to share a room Sunday night, as Jacob has appts. at Mayo on Monday morning too. She was going to bring her little 4 yr old Devin with, and I know Carl and Devin would have a Great time playing together!!!

The kids went with Auntie Sheila and Sarah & Katherine to see the Movie "The Cat in the Hat" today in Redwood. It sounds like they had a good time!! We went to Church tonight, and Sydney was the Cross Carrier!!! She has been looking forward to doing this, and she did a Great Job!!! She looked so grown up, and we felt very proud to watch her be a part of the procession:) Both Tom and I made eye contact with Sydney up on the alter. We smiled, but tried not to make her crack up. It brings back memories of my sister and I in church, looking at each other and trying not to giggle:) The harder we tried, the harder it was to stop:)

Carl has enjoyed Pika being around:) She is doing very well and is just so darn cute to watch!! She is already a very spoiled little puppy. The cutest thing is to see Carl come into the room, carring Pika in his arms:) He totes her around like she is a little doll.

We will see what tomorrow brings?? Either we will start out for Rochester, or Carl will be home getting a ride on Uncle Chucks snowmobile:) I bet he would choose the latter:) But I do know he would also have fun meeting Karla and little Jacob & Devin. They are coming from Wisconsin, so I don't know how their trip in will be either? You can visit Jacobs page here: JACOB'S PAGE

Thank you for all of your Powerful Prayers for Carl and our Family!! We appreciate your notes and emails we Love to read every one of them!!!

Prayer Requests ~

For all our friends with Cancer, and other illness.

For Carl's test results to be Cancer Free!!
(Still waiting for the NY results)

For all those driving in this snowy weather, for safe travels.

May God Bless you all


Many are the plans in a man's heart, but it is the Lord's purpose that prevails.
-Proverbs 19:21


Love & Prayers

Kelly & Tom
& Family


Thursday, November 20, 2003 4:27 PM CST

Good Evening, and Thank you for checking in on us!!!

WOW it sounds like Carl and Tom had a Great time with Family and Friends in NY!!! We got home about 10:30pm, and Carl was sleeping on the way up the driveway. We tried to wake him to see his surprise the kids and I have worked on for him:) We decorated the front yard with some Christmas Lights, candy canes and candle sticks. We put up a luminated inflated Snowman, and Santa, both 8 feet tall:) Carl was quite sleepy from the journey home from the airport so he didn't enjoy the lights as much as I had hoped:( But he will get to see them many days to come!!!

He greeted Auntie Sheila, Sydney & Sam with Smiles and lots of excitement!!! Sam got busy looking for anything new in Carl's bags and for anything that could possibly be meant for him:) Tom and I talked for awhile and went through the Great pictures that he brought back. They sure enjoyed their time with Freddy & Patti, and pictures really do say 1000 words!!! It looks like they had sooo much fun!!! We talked about how Lucky we are to have a connection with our NY relatives, we are so blessed to have this opportunity to share time with and get close to real family away from home!!! It feels so good, and we are so Happy to have them in our lives, and be a part of theirs:) We Love, that Carl is Loved so much by our family in NY!!! We wish we could have them here at home too, for the rest of our Mn family to enjoy the same!!! We are talking about a family reunion sometime in 2004, and getting our NY relatives here in MN together with all the Robinson/Wolter family!!! We are excited and think this would be a Great Family Reunion!!!

I also got to see the pictures Tom took of Carl with his new friend Anna at the clinic during treatments. I think Anna is so pretty and sweet, it sounds like Carl and Anna had a famous time together!!! Carl has a way of capturing hearts and I think he has Anna's now too:) I will be posting some of these Great Pictures soon!!! Anna is a Beautiful 18 year old girl. She was diagnosed with NB July 4, 2002, right before Carl was diagnosed. NB does strike older kids too, something we learned from our journey to MSKCC. A child of any age can be aflicted with this terrible cancer.

Carl looks so GOOD and I'm sure he has grown at least an inch during this two and a half weeks he has been gone. He also looks like he has beefed up a little:) It must be the daily stops at McDonalds on the way back from the clinic:) I think Carl must have 20 Happy meal toys. The little orange collar that Carl brought home for Pika is not little enough:( She is pretty tiny still, but I know she will grow into it quickly:) Carl Loves his new Puppy, and Pikas sure Loves him too:) They are a perfect match!!! Tom even "likes" Pika.....so far:)

Today Carl went to Grandmas for the day while I worked. He also got to hang out with Uncle Chuck some:) Carl got to tag along, to bring home Uncle Chuck's snowmobile, and I'm sure he was in his glory:) We talked about snow on the way back from Morton, Carl is all ready to get a ride on that sled as soon as it snows!!!

I am going to try to get some Pictures added after supper, and we have lots of unpacking and putting away to do. The kids are Happy, and playing together so nice!!! It is very good to have them back home again!!! Last night when I was putting Carl in his car seat at the airport, I asked him "Can Mommy mooch you up?" :) He even said "Yes"!!! I have alot of Mooches to get caught up on:)

Have a Good Evening Everybody!!! We Love You all!!!

The fruit of the Spirit is Love, Joy, Peace, Patience, Kindness, Generosity, Faithfulness, Gentleness, and Self-Control."
-Galatians 5:22


Love & Prayers

Kelly & Tom
& Family


Tuesday, November 18, 2003 5:08 PM CST


Good Morning this Thursday!!! Carl and Tom got home safe and sound!!! It is Great to have them home again!!! Carl has lots of stories and treasures to share, and Sam is enjoying going through the bags to see what looks new:) I will update more later, I got called to work today and need to get out the door soon:( Have a Great Day everyone!!!

Love & Happiness

Kelly & Family
**********************************************************



Good Evening to Everyone!!!

I just got off the phone with Carl and Tom:) They are very Excited to be coming home soon!!! Carl had a million things to tell me, he told me about the OrangeCollar and leash that he got for Pika at a Pet Expo he went to this weekend with Freddy & Patti:) Dad already had it packed, but he was trying to get him to dig it out while we were talking:) Carl asks about his puppy every time we talk. He always asks, "Is my puppy sleeping?" Today it was Soo nice here in Mn. So Pika enjoyed being outside longer than usual!!! I picked the kids up from school today so Sydney could get a wire on her braces fixed, that had come loose yesterday. I brought Pika with, and we stopped by Jenny Bloedow's room at school to introduce her little charge:) Jenny has offered to babysit when the whole family needs to be away!!! I think the two hit it off just fine:) Pika gave Jenny lots of puppy kisses:)

Tom and Carl went up to Rockefeller Center to see the Christmas Tree. It was not all decorated and will not be turned on until the first week of December. But they got to see it standing. They are almost all packed and Tom is finishing up some laundry. Tonight the children in the House are making Christmas Ornaments:) We are busy here at home getting ready for the homecoming!!!!!

Thank You to Freddy & Patti for having the guys stay again!!! It sounds like they enjoyed their weekend very much!!! You are too good to us, We Love you so Much!!!

Wishes for a Beautiful Evening!!! Enjoy this Beautiful Weather while we have it, We are So Blessed!!!!!

Prayer Requests ~

For Carl's Scans and tests to be Cancer Free!!!

For Safe travel home for Carl and Tom.

For all our friends everywhere fighting NB and other forms of Cancer and Illness.

For the soldiers, away from home missing their families.

God Bless

The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing.
Zephaniah 3:17


Love

Kelly & Family


Sunday, November 16, 2003 8:38 AM CST

Good Morning this Sunday!!!

We are keeping busy here with little Pika, and the kids are in their glory, having a little baby to haul around and cuddle with almost non-stop:) It is a good thing Carl is not in school yet, he will need to be holding her alot, after Sydney and Sam are finished with her this weekend!!!

I talked to Tom yesterday, I could hear Carl in the background giggling, and playing!!! He sounded very Happy:) Tom mentioned that they did get to see Anna before they departed on Friday!!! Carl was able to give her, the snow globe, and a set of pictures they developed!!! I was glad to hear that news!!! Carl will be out of treatment this next week, but will have a couple of tests. On Monday he will have his Bone Marrow Aspirates, and Biopsy, then on Tuesday, an injection of Isotope that will highlight any Cancer areas on the MIBG Scan which is scheduled for Wednesday at 2:00pm. The injection must be done 24 hours in advance of the scan. Carl will also need to take Iodine drops for three days for thyroid protection. The scan can damage the Thyroid, so these drops cover that. Otherwise, they will have some free time between procedures to do some fun things during their last couple of days in NY. They will be flying back home Wednesday night!!!

Tom said today they may take a train back into the city from Long Island. That should be quite an experience, and I can't wait to hear all about it when they get back to the "Donald House"!!!

Prayer Requests ~

For Carl as he has these scans and tests this coming week, Please Pray for clear cancer free resuluts!!!

For all of our wonderful friends we have met along this journey, also battling Cancer and other illness.

For the troops, as they are away from their homes and families, for their safety, and for peace. Sam asked me last night as we were watching the news, "Mom...how come God made guns?" I told him, "God did'nt make guns, people made them". Funny how a little mind trys to make meaning of what they see and hear...

God Bless Everyone!!!

"The light of the eyes rejoices the heart,
and good news refreshes the body."
-Proverbs 15:30

Love & Huggs

Kelly & Family


Saturday, November 15, 2003 5:54 AM CST

Good Morning to all!!!

We are Happy to Announce the arrival of new family member "Pika" :)

She joined our family offically last night, and the kids are so Excited about her!!! They want to take her everywhere and show her off:) Sydney wanted to bring her right over to Jenny Bloedow's house last night, after some convincing, she agreed we should probably call ahead, and make sure it is ok before we just pop in with Pika:) So be expecting a call sometime Jenny:)

Carl does not know that Pika is home yet, but I'm sure when we talk to him today, he will be very Happy about the news!!! She is doing well so far with trianing, I am not going to brag, because she has not even had 24 hours yet, but she is coming along great, and is such a little Love!! I think she willl fit in with our family very nicely:) She already has the potential to become a very spoiled little puppy:)

Carl & Tom are at Freddy and Patti's for the weekend!!! I know that they will enjoy their visit again, and Carl will get lots of Huggs and Mooches all weekend!!! Carl and his new friend Anna, said their goodbyes yesterday, as Anna will be going home for a couple of weeks between her treatments. Carl had a little snow globe that he picked out for her, and brought it to the clinic yesterday:) Tom said that the globe was broke accidently, so they got Anna a replacement but missed her before she left:( We will have to mail it to her home, when the boys get back, so she will have a little rememberance of Carl:) Tom also got a roll of film developed from this past week, and he said there are some very cute pictures of Carl with Anna:)

Wishes to all for a very wonderful day!!!

God Bless


"He will command his angels concerning you to guard you in all your ways."
-Psalms 91:11


Love

Kelly & Family


Thursday, November 13, 2003 7:24 AM CST

Good Morning Everyone!!!!!

What a Bright and Beautiful Morning here in MN!!!

Yesterday, we were not sure what was going to transpire? It started out cloudy, then the next thing was blowing just terrible, and snow fluries whipping in every direction. Then it stopped, and turned into a very nice sunny day:) Then last night, driving home from religion class with the kids, the moon was out and just as Orange and Pretty as you can imagine!!! It was not quite full, but was burning so brightly, it was a sight to behold.

Here is a Beautiful slide show, sent to us from our Sweet Niece Jenny Robinson. If you have a moment, it is very Beautiful to watch. Just click on the link, and wait for a few moments for it to load. It is worth waiting for:)

AN INTERVIEW WITH GOD


I would like to ask for lots of Prayers today for Jenny!!! She has a very Important Job Interview!!! Lets Pray very hard for Jenny and send lots of positive engery her way!!!

I talked to Carl a couple of times yesterday:) He was in a very good mood!!! He has been talking about getting a (Orange back scratcher)??? I'm not sure about this whole deal, I think it started one of the times we were in NY and he spotted one at the Hospital gift shop. He has asked for one ever since:) The gift shop does not have them any longer:( Tom and Carl had stopped at a couple of stores on the way back to the "Donald House" yesterday, and found a "back scratcher" not orange, but it was ok, so he settled for the one they found!!! It seems we are always on some sort of a mission to find something that Carl gets in his head that he must have!!! That slacked off while we were at home, but I do believe it has started up again:) I will never forget, some of our past missions:

Pooh slippers
Pooh sunglasses
Pooh watch

I think he was on a Pooh kick in Rochester:)

Orange Sunglasses
A little rubber pig
A little Hammer~ this is Auntie Jill's favorite
A little Shopping cart:) Auntie Janet remembers this one;)

I am sure there are more I can't recall at this time:) Lots of fond memories!!!

Sam is missing Carl just terrible:( He has started to ask daily, "How Many More Days til Carl comes home"? This morning I came up with an idea, I suggested we make a paper chain, and that would show how many more days til Carl comes home:) So Sam made a chain of 6 links, and will get to rip off the first link tomorrow!!! He is now busy making a chain, to count the days until Christmas!!!

Wishes to everyone for a Wonderfuly Beautiful Day!!!

Please remember in Prayer, all our friends in NY also having treatments, and all the children everywhere fighting NB and other types of cancer. Say the above Prayer, for their complete healing.

God Bless

Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go.
Joshua 1:19


Love & Prayers

Kelly & Family


Tuesday, November 11, 2003 10:58 PM CST

Good Evening to everyone!!!

New Photos added from this past weekend!!!

I can't believe it is almost Wednesday already, only one week left, and Carl will be home. I am Soooo ready to mooch him up:) Every time I talk to Carl on the phone, I tell him "have Daddy mooch him up for me" :) Carl says "We don't mooch, we just Hugg" :)

Carl has met a new friend Anna, at the clinic and Ronald McDonald House:) They have been sharing a room for treatments last week, and this week. Tom said that he has enjoyed visiting with Anna and her family, they are very sweet people!! Carl likes Anna very much:) One of the childlife girls asked Carl who his friends were at the Ronald McDonald House, and he said "Anna" :) It sure makes the long clinic hours more enjoyable, when you are able to meet and become aquainted with so many Wonderful families we have been Blessed to cross paths with!!!

It sounds like Tom and Carl had a Great Weekend at Freddy & Patti's, as Always!!! And it sounds like Carl is a little bit closer to being "Rotten" as in Spoiled Rotten!!! I am so Happy that they were able to see another of Freddys brothers Steven, his wife Dana, and daughter Lynsey!!! Keith and Chris were able to come too, and they had a little Birthday Celebration for Chris!!!! They also got to see Donna, (Patti's sister) Jillian (Donna's daughter) and Pop (Patti's Father)!!! Carl and Pop just Love to be around eachother, Patti said it was so fun to see her Dad Laugh at Carl:) They sure have a very special bond!!! We are so Grateful for the Wonderful Hospitality we have been showered with on each visit to our Relatives there in NY!!! Tom shared with me, that Carl told him, he did not want to go back to the "Donald House" he wanted to stay there with Freddy & Patti:) Thanks for all your Love!!! We feel so lucky to be able to share these precious times with all of our Relatives there in NY. Our family away from home!!

I am going to work on Tom to do an update sometime this week!!! He has quite a bit of spare time while Carl naps each day, and a lonely laptop staring him in the face, and begging him to type a journal!!!!! Maybe Tomorrow??? :?)
Not that I mind, I love to journal, I just think it would be fun to hear from Tom:) What do you all think???

Have a Great day!!!! I will say day, because it is almost 11:30 MN time, and 12:30 NY time so that counts as tomorrow here, but today there. And it will probably be morning when you are all reading this:)

Thanks for your guestbook entries everyone!!! We Love to hear from you, and Appreciate your Love & Encouragement!!!


God Bless you all+

"I pray that, according to the riches of his glory, he may grant that you may be strengthened in your inner being with power through his Spirit."
-Ephesians 3:16


Love & Prayers

Kelly & Family


Sunday, November 9, 2003 8:49 AM CST

Good Morning this Sunny Sunday Morning!!!!!

HAPPY BIRTHDAY TO ~ Chris Hauck today November 9th!!! Hope you have a very Special Birthday Chris, we are thinking about you here in Mn. and wondering if you will get to see our boys this weekend!!! Have lots of fun whatever you do:) All our Love to you and all the family there in NY!!!

We made it to Bryan's games Friday and Saturday!!! It was great to watch them play again!!!THE HUMBOLDT HAWKS Took FIFTH place in the State Tournamet!!! It was so exciting to watch the Saturday games expecially!!! They lost the first game on Friday night, but came back Saturday to prove they are NO.1!!! The Hawks played without 4 of their teamates this year, and still proved they could play their best!!! I brought my Digital camera to take some photos of the team, and my battery pooped out on me right as they were grouped together for the Team Photo, with Bryan holding up their Trophy:(

After the game, we went to the new movie Elf that came out on Friday!!! It was very cute, We really enjoyed ourselves!!! It is always good to "Escape at the Movies" :) It is also Great to see a good Holiday movie around this time of year, it has a way of putting you in the spirit!!! Our favorite part was when Elf drank a 2 liter bottle of Pop, then let out this huge Looong belch:) Then he turned to the kid sitting next to him and asked "Did you hear that"? LOL We laughed and laughed, I had tears running down my face:) Not the best encouragement for Sam... we are trying to get him to stop Burping out loud in public, and laughing about it:)

We have not heard from our boys in NY yet, I am sure they are having a Great weekend, of visiting and laughter!!! I'm sure Patti is giving lots of Huggs, and Mooching up Carl for me:)

Thank You everyone for checking in on us this weekend!!! We appreciate your Love & Support always!!! We know the Prayers are being heard above, we feel comfort and peace surrounding us daily. God Bless You All

If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast.
Psalm 139:9-10


Love & Prayers

Kelly & Family


Friday, November 7, 2003 6:57 AM CST

Good Morning & HAPPY FRIDAY

The first long week is almost over for Carl's antibody treatment in NY!!! I know Tom will be rejoicing today when they are on their way back to the "Donald House" It has not been an easy week for Carl, I sure Pray that next weeks treatments are better!!

The boys will be spending the weekend with Freddy & Patti on Long Island at their home!! Carl has a surprise for Patti, that he came up with on his own :?) and he is very excited about it!!! Patti said they may get to see Pop this weekend too, Patti's father, who Carl just adores!!!

On the homefront, we are doing Great!! Bryan's Adapted Soccer team THE HUMBOLDT HAWKS play in the State Tournament tonight!!! The game time is 6:30pm at the Stillwater Highschool. They will also play tomorrow morning, even if they lose tonight. The team will be a little compromised this year :?( They lost one of their key players a few weeks ago, due to a coach from another team. The Adapted team is made up of players with a number of different disabilities. From being in a wheelchair, to hearing impaired. This coach tried to get two of the boys removed from the team because they were only "Hearing impaired" and he did not think that qualified? I'm not sure all the details, but one of the boys was allowed to return and play. Then just a few days ago, two of the Hawk players were involved in a fight, and were suspended. These two boys will not be playing in the tournament. These two players are also key players, one is the goalie, and the other is one of their main Offensive players. It is a shame, but perhaps will teach a valuable lesson!!

We will update after the games and will have some cute little anecdotes from Long Island to share of Carl's adventure with Freddy & Patti:) I am so excited for them to see our Big boy, I think they will be very amazed at how much he has changed over the past two months:) I think he has changed so much in looks, and he has really matured. Mooch Up that dolly for me Patti!!! And have a Fun Reunion!!!!! We wish we were there too:(

Have A Great Day Everyone!!!! We are enjoying the Beauty of the Sunshine here in Chilly Mn.

Consider all the Miracles that happen around us everyday...You can find one, if you just look....Miracles are a gift from God to those who open their hearts to see.

Love & Prayers

Kelly & Family


Wednesday, November 5, 2003 10:18 AM CST

NEW PICTURES ADDED:)

The top picture is of Snoopy, with the boys, at "Camp Snoopy" when we went there for the (Make a Wish Event)!!!

I have gotten terrible with film developing since Carl came back from NY the last time:( I just got the pictures back today. Two are of Freddy & Patti with Carl at an adventure park they went to on their last trip!!! The third is of Sydney & Bryan after Bry's Soccer game on his 16th Birthday!!!

Look at Carl's little bald head :?) well he had a few hairs growing!!! Boy has he changed in 8 wks!!!

Have a Great Evening!!!

Love to all,

Kelly
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Good Morning Everyone!!!

I have changed Carl's homepage format, to include Lunch for Life Info, and links!!! It will make my updates much easier, as I will not have to type this info each time I update my Journal!!!

I am waiting for todays report from NY on Carl's treatment!! Yesterday he did have a tougher day Tom said. He needed to have 3 doses of Narcotics to manage the pain. It seems that the timing of the first dose sure make a difference in the whole outcome. If he gets this too early, then it wears off before it has a chance to help when the pain starts. I sure hope today is better!!

The phone just rang and Carl is on the phone telling me about a brown bear that he got in his McDonalds Meal!!! He sure sounds GOOD!!! Tom said that Carl has been eating very well, they have been making lots of trips to get munchies:) Tom reported that he did have pain like yesterday:( and he needed 3 doses of pain meds again:( I am so glad that he recovers from these treatments, and is able to enjoy the rest of his day away from clinic!! So far I have not heard about any mood crazies, but that usually comes toward the end of the week. Tom also said that Carl is scratching alot. I forgot to pack the benedryl so they will be making another trip to the store to pick some up. He usually starts to get hives towards the end of the week too, from the antibodies.

Thanks everyone for continually checking in on us, and for always keeping Carl and our family in your Prayers!!!!!

Please keep Christi Thomas in your Prayers as she is starting MIBG treatment at CHOP. CHRISTI'S PAGE

"All who believed were together and
had all things in common."
-Acts 2:44

Love & Prayers

Kelly & Family


Tuesday, November 4, 2003 7:55 AM CST

Good Morning this Tuesday!!!!

The kids are off to school today, a little sad:( I am too, we really had a fun day yesterday!!! When the bus was a little late, we had a glimmer of hope that school was called off today for slippery roads or something, but then we looked up the road, and spotted the familiar flashing light coming over the hill:)

Carl is doing well, when I talked to him on the phone yesterday, the first thing he asked me was "Is my Puppy there"? :?) I remember last time he was away, the question was always "Is Sam riding the Gator"? :?) I remember Freddy getting such a kick out of that when the boys stayed there last time!!!

After my Sunday Journal, I received an email from cousin Patty Hauck from NY. She wanted me to know about Carl, when she saw him in August that night he had the seizure. Patty said: "When I read the website it was very strange about August 29th when Carl had his seizure. Now that you mentioned it I thought it was different. There was a feeling when we were trying to wake him up. It was not a panic type of feeling that you should have in these type of circumstances. Something made me say this will be OK and not to panic. The serentity that Carl had when you touch him was reassuring that everything would be OK. It was almost like he was dreaming. When he was alert he said turn off the light I want to go back to sleep"!

And I do remember how Tom told me on the phone, that Patti and Freddy were so calm through everything, and helped him so much with Carl that morning. All I could think, is that if I were there, I would probably be a basket case. I was very greatful they were surrounded by such Love & Comfort!

Patti also mentioned that she got to meet one of our Sweet Nurses Rosemarie C. at her door on Halloween!!!!! What a Surprise to actually have someone that knows Carl show up at your door at Long Island NY!!! Patti was also very busy:) She said she made up some flyers to pass out to the parents bringing their children to tell them about Lunch For Life and one of its very special little soldiers!!! Thank You Patti for such a Great Idea!!! I shared your idea with Mark Dungan, and he will probably add it to our "From The Front" link which features stories of what people have been moved to do for our Crusade!!! :?)

A couple of Updates:

My Mom is doing better!! I took her to Willmar last Thursday to see an Internal Medicine Dr. It turns out that she has been suffering with a Urinary Tract Infection, and has a thyroid imbalance which both conditions can be treated and hopefully will make her feel much better!!! Holly and I brought her TV back up to Woodale, and took her some pretty flowers to cheer her up!! She is back in her original room that she spent the last year in, and I also think that will be comforting for her.

Bryan is playing in the Adapted State Soccer Tournament on Friday Nov 7th, and 8th!!! The time for Friday night will be 6:45pm at Stillwater Highschool, against South Suburban!! This team is the one that caused all the problems for the two deaf boys that were playing with the Hawks. It should be interesting!!! The address for the Stillwater Highschool is 5701 Stillwater Blvd. GO BRYAN AND THE HAWKS!!!!!!!!!!!!!!!!!!!!!!

Prayer Requests ~

For Carl as he completes the first week of 3F8 Antibodies, that he tolerates the treatments well without too much pain.

For John Frank, Keep John in your Faithful Prayers!! JOHN'S PAGE

For all the children at MSKCC, And everywhere fighting the battle of their lives against NB and other forms of Cancer.

Have a Beautiful Day!!!

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Sprit.
Romans 15:13

Love & Huggs

Kelly & Family

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Lunch For Life ~ We are waiting for a story on Carl and our Lunch for Life Project, to run in the Rochester Paper. I will keep you posted!

Our story is being heard, lots of new coverage is in the works!!!

Links~

Lunch for Life CLICK HERE

In The News CLICK HERE

Stories from the Front CLICK HERE

CNCF - Childrens Neuroblastoma Cancer Foundations, CLICK HERE

CNCF Mailing address:

P.O. Box 6635
Bloomingdale, IL 60108

Phone No. for CNCF 1-866-671-2623

Thanks for all your Continued Support Everyone!!!!


Sunday, November 2, 2003 7:05 AM CST


NEW PHOTOS ADDED:)

Check out our Franklin Mn. Wintery Wonderland!!!! The Kids are so Excited to have some snow!!! They tried to make a snowman, but it is too fluffy, not sticky enough:(

I just talked to Tom, and he reports the weather in NY is 78 degrees. He said they used the air conditioner some yesterday to cool the room a little:)

OK I guess I picked the wrong time to stay home;)

Carl is napping right now, they are going to take a walk to the park when he wakes up!!! That sure sounds like fun right now!!!

Carl did well today in treatment. Tom said they saw some of the regular nurses that know Carl!! I'm sure they enjoyed having him back:)

The kids and I went up to Redwood, (No School Today) and did a little shopping. I found Sydney a new winter Jacket at Wilson's, (Going out of Business sale) as we were driving, we flipped through the radio stations, and to our surprise, 94.7 is playing continuous Christmas Music!!! A little early yet, but with the snow falling so pretty, it was very welcome!!! We sang Christmas Tunes all the way home!!!

It was good to have the kids home today it really felt an actual snow day!!!

A very Nice Evening to all!!!

Gods Blessings

Kelly & Family

***************************************************************
Monday Morning Update:)

Room Number 407
Phone No 212-639-0407

Our boys got into NY safely yesterday afternoon!!! The NY Marathon was going on near the Ronald McDonald House on 1st ave, we were surprised to hear from them as soon as we did, with all the traffic. Carl was such a big boy on the trip, he even told Dad he had to go potty on the plane:) Then later that night, I was talking to Tom on the phone, he stopped talking for a moment to check and see where Carl disappeared to. Much to his surprise, Carl went in the bathroom and got on the pot all by himself!!! :?) What a Dolly!!!!!

It should be about 8:00am right now in NY. Carl will be at the clinic already, either getting weighed in, a finger stick, waiting, or seeing Dr. Kushner. I am very Excited to hear what they all think of our big boy!!! He is looking so well and healthy!!!

I will update later after I hear back from the boys!!!

Lots of Love, Have a Great Day!!!

Kelly

********************************************************************

Good Morning this Sunday!!!

Welcome to Carl's Corner!!!

Thank You for stopping by today, and for all of your Love & Prayers, that we certainly feel!!!

We are already missing Carl & Tom, as they are in route with Uncle Chuck to the airport. :..(

Sydney and Sam have hopped in our bed and are watching TV together. We handled the good byes pretty well, I kept my composure until I looked out the window and saw Carl from behind, making his way to Uncle Chucks Truck. We did have a little while this morning to hugg and cuddle before they left, and I must have told him a dozen times how much I love him:) Carl is such a Strong, Brave little boy, he is our Hero!!!

Last night we enjoyed a Chili Supper at Uncle John's and Auntie Sheilas after Church!!! It was very good:) Auntie Janet had stopped over earlier before Church, so she stayed and then went with us to Church. It was very nice to have Auntie Janet with us, She is Carl's God Mother, and that little boy is very Special to her!! Likewise, Uncle Chuck is Carl's God Father!!! Both Auntie Janet and Uncle Chuck hold a very Special place in Carl's Heart!!! We are So Blessed to have always had such Loving Supportive Auntie's and Uncles to help raise our children!!!

While Auntie Janet was here yesterday, we visited about Carl, and about when Carl had talked about John Frank to me. Janet asked if I knew what Carl was doing on a couple of occasions that the Frank Family had gathered together to Pray for John. The reason why, is that she had talked to a relative of John's, one night about this. We looked at a calander to see where Carl was in August. He was in NY for treatments from August 24th through September 5th. Then we looked on Carl's website, and scrolled back to those dates to look for anything significant. We went through the week, and when we got to my August 30th Journal, we stopped in our tracks. That was the weekend that Carl and Tom spent at cousins Freddy & Patti Hauck on Long Island, inbetween treatments. Friday night, actually early Saturday Morning, August 30th, Tom was awakened by Carl having a seizure. Now that I look back, this was a very unexpected episode. He had a fever, but not a really high fever. (Carl has a history of febrile seizures) Then, he never spiked a fever after that, and he was not sick, to explain the fever that provoked the seizure. He recovered from this, and was well and normal from then on? Then Janet and I then went into John Franks History on his website, to find the dates when the family Prayed over John. We scrolled through those dates, then to the Friday August 29th entry, that was when the Frank Family laid hands on John, and said some Special Prayers for his healing. What an Amazing coincidence. We don't know if this has any connection, but it sure makes you wonder... I told Janet when I had first learned about John. The first day that I mentioned John in Carl's journals was August 27th, Carl was in NY then. I remember feeling such a stong need to Journal about John, and to ask for Prayers then.

Our Family continues to ponder over the turn of events, and Carl's witness to John's healing. We are sure the Frank family is also doing the same. All we can do, is to Pray, have faith in the Goodness of the Lord, and Believe that Miracles do happen. I truly believe that John and Carl are Miracles, and the Lord has Blessed us with an Incredible Testimony, through Carl, for their healing.

Please keep John Frank in your Powerful Prayers, as we continue to witness John's healing!!! JOHN'S PAGE

Please keep Carl in your Prayers as he will start round 5 of antibodies on Monday.

Pray for all the children everywhere fighting NB and other forms of Cancer.

God Bless you all

I sought the LORD, and he answered me; he deliverd me from all my fears. Those who look to him are radiant; their faces are never covered with shame. The angel of the LORD encamps around those who fear him, and he delivers them. Taste and see that the LORD is good.
Psalm 34:4-5,7-8

Love & Prayers

Kelly & Family

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For "Lunch For Life" Info, Please go to my previous journal in the Journal History where you will find links that will take you there!!! Thank you


Thursday, October 30, 2003 7:53 AM CST


Saturday November 1st Update!!!

Good Morning and Welcome to Carl's Corner :?)

HAPPY ANNIVERSARY TO ~ Keith and Ann Hauck today Nov. 1st!!! Congratulations to you both!!! Wishes for a Wonderful Day, and Many More Happy Years to come!!! Sending all our Love to you there In NY!!!! Love & Huggs ((((()))))

We had a very FREEZING Fun Halloween:) It was very cold, I can't remember it ever being this cold while trick-or-treating? I do remember a couple of years of snow however:) In 1991 we got 21 inches I believe, then again in 1997 9 inches of snow:) I think the wind was just so raw last night Burrrr:( Carl and I cut it short and went back to Grandpa & Grandma Robinson's house. Tom kept going with Sam, he was not ready to give up!!!!! Needless to say, they came home with more candy than they ever imagined!! They played with their candy for a couple hours before going to bed. I can remember doing this with my sister Holly when we were kids:) We would get home, sort out all the like pieces, then line them up in rows, then trade, then eat, then do it again:) Good Memories, and to watch these guys sure brings me back to those good childhood days:)

We did watch the Unsung Heros segment last night on WGN, and it was very good!!! Both Ann and Pat did such a good job!!! The segment is scheduled to air several more times, you may check the "In The News" link to read the story and check for additional air times. CLICK HERE FOR NEWS

There was also a story done in the Denver Post yesterday by Tony Pasma, another NB father. It is definitely noteworthy, you may want to check out. It really touches on the "Funding issue" where the NCI, (National Cancer Institute) which is government funded, allocates their dollars. A very informative story!!!

Well I have alot of packing to do to get my boys ready to fly out to NY tomorrow morning!!! I had better get started:( They boys fly out early in the morning. Uncle Chuck is going to bring them to the airport this time. We thought it would be easier to seperate, if we avoided the long hard goodbyes at the airport. Tom said last time they flew out, Carl cried half the way to NY:( It just breaks my heart. I think he is ok with leaving this time, When I mentioned that he would be seeing Cousins Freddy & Patti, his one eyebrow went up:) and he got a big grin on his face!!! He will have lots of fun in NY, and we will keep busy here at home to make the time pass quickly!!!

Wishes for a Beautiful Day!!!!

God Bless you all

Love & Pryers

Kelly & Family

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Happy Halloween to Everyone!!!!!

The boys are in costume, and starting to fight, so we are heading out the door to make a couple of stops:)

Bryan's team "The Humboldt Hawks" Won their game last night, so the Hawks will be going to the State Adapted Soccer Tournament next weekend!!!!! Go Bryan and the Hawks!!! I will update game times later, I do know they will be playing at the Stillwater Highschool!!! They had lost two of their players, and had 5 games stripped from them, due to a coach from another team thinking they were not eligible as "Just being deaf" the Hawks faught back, and are able to keep one of the players!!! It is such a shame this type of negative sportsmanship must be displayed by "Adult" Coaches! The Hawks are Happy to get their one player back, but are very sad for the unjust situation that has happened to their team!!! These boys are Awesome and Play their Hearts out!!!!!

Have a Great Day everyone, we hope you have a Spookey Halloween:) BOOOOO :?)

Remember to tune into WGN TV tonight between 9:00 and 10:00 CST, if you are able to. They will be doing a "Lunch For Life" piece in the Unsung Heros segement!!!

Love & Huggs

Kelly & Family

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Good Morning to All!!!

New Photos added last night:)

Well the snow is gone, and it feels a little warmer out today:) We sure are not ready for that white stuff to be sticking, and staying around for five months. The kids would Love to have it though, every time they see a few flakes in the air, they get soo Excited:) I do believe the Robinson's will have to plan a couple of sledding parties again this year!!!

Carl's potty trainig is going very good!!! He has been telling me when he has to go, as he runs to the bathroom:) He is still filling up his sticker chart. It was Soo funny yesterday, Sam went running for the bathroom announcing "I gotta Poop"!!!! then he asked "Can I put a sticker on Carl' s chart"? I laughed all day about that one:) Carl's little reward (PIKA) should be here when Carl gets back home from NY, in a couple of weeks. Sydney and I will have a little time to work on training the puppy before Carl returns to his new puppy:)

The boys are all excited to go Trick-or-Treating tomorrow night!!! Sydney will be attending a party with cousins and friends in Franklin:) We plan on making a couple of early stops during the day tomorrow, as Friday is Sams off day this week!! Carl just got up, and asked in a very sad little voice "Where is Sam"? He feels so lonely when big brother is gone to school. I reminded him that tomorrow the two of them will be together, and they will finally get to Trick-or-Treat!!!

If any of you are at home Friday Night, October 31st, and get a chance to watch WGN TV out of Chicago, the "Unsung Heros" Segment will feature "Lunch For Life" in about a two minute spot. The air time is supposed to be between 9:00 and 10:00 CST. This will be our first National Coverage of our Project!! The segment is also scheduled to air in Chicaco on Direct TV in several other time slots.

On Tuesday morning our Church had an Anointing/healing Service, which I brought Carl to. It was very nice, and I felt very good that I was able to bring him. During the Anointing part, Father says a blessing, then does the Anointing on your forehead, then on the palms of your hands. After we got back to our seat, Carl began clapping his hands together, and was not stopping. He was fascinated with the oil, that made his hands feel wet. This was kind of embarassing, and I couldn't get him to stop doing this. After the service, we had rolls and coffee downstairs. John Goelz said, "Well it must have worked, Carl was sure Happy, he was clapping his hands" :)

Thanks for stopping by, and for signing Carl's guestbook!! It is always fun to hear from all of you!!! Thank you for keeping Carl in your Prayers, we are so Blessed everyday that he continues to be well and thrive!!!

Prayer Requests ~ John Frank, Please keep John and his family in your Prayers, John is doing very well!!! JOHN'S PAGE

Please keep my folks in your Prayers, Mom is having a difficult time since she returned to Woodale with her broken leg. Today Dad & I are taking her to see an Internal Medicine Dr. in Willmar, to have all of her medications reviewed and see if we can make some changes.

Please remember in Prayer, all of the children fighting Neuroblastoma. And all of the children battling other forms of cancer and illness.

Have a Great Day!!!

You will not have to fight this battle. Take up your positions; stand firm and see the deliverance the Lord will give you... Do not be afraid; do not be discouraged.
2 CHRONICLES 20:17

Love to all

Kelly & Tom
& Family

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"Lunch For Life"

Is still growing!!!!! One of the NB Dads is working on a (Professional) Flyer, to use to promote our campaign. It may be used for Businesses to hand out to employees, and possibly get in some magazines!!

To read about Lunch For Life CLICK HERE

To read what is happening "In The News" CLICK HERE

CNCF ~ Childrens Neuroblastoma Cancer Foundation
CLICK HERE

CNCF Mailing Address

P.O. BOX 6635
Bloomingdale IL 60108

CNCF Phone No. 1-866-671-2623


Monday, October 27, 2003 7:03 AM CST

Wednesday evening update!!!

NEW PICTURES ADDED:)

It is cold out, and snowing.... BURRRRR

Sydney got her full set of braces on today, and looks adorable:)

I will update more later, have a Great Evening everyone!!!!

Love
Kelly
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Good Mornong this Monday!!!

Welcome to Carl's Corner:?)

We hope you all had a Great Weekend!!!

It was good to go back to day light savings time, it is crazy but I really think we feel more rested with that one hour turned back? This morning I woke up right at 6:00am right before the alarm went off, and felt well rested!!

Sydney just left for the bus, Sam is awake here cutting toy pictures out of my Parents magazine:) (He must feel well rested too) :?) Carl is still sweetly sleeping:) Carl has seemed more tired this weekend, and napped some yesterday. His runny nose, and cough are much better, but he still is not feeling up to par.

This is our last week before Carl heads back to NY for round 5 of GMCSF/Antibodies. I can't believe our 8 weeks at home together have came and went this quick. We will be spending time this week, getting things organized, and located to get ready to pack. For so long, we have had our bags partially packed, as we were going every couple of weeks, but now we will have to start over and try to remember all of the important things to take along. After this trip we will be home for Thanksgiving, Christmas and New Years!!! Unlike last year, we spent all of these in either St. Marys Hospital in Rochester, or in the "Donald House" We still enjoyed being together, but there is nothing quite as special as being home for the Holidays!!!

Carl just walked out of the childrens bedroom, he is up and ready to go too!!! The boys will have three days at home together this week, including Friday "Halloween" It will be fun for them to trick-or-treat together this year!!! Last night Sydney brought up something that I nearly forgot about:) a couple of years ago Carl was just beginning to talk, while we were out trick-or-treating he would say "Numm a naaa" which was his word for food:) that's what his request was, when people would answer their doors:) Very Precious Memories!!!

Please remember in Prayer ~ John Frank, keep the Prayers coming for John and his family!!! It is so Exciting to read John's Progress every day!! JOHN'S PAGE

Please keep my Mom & Dad in your Prayers. Mom is having some difficulites since returning to Woodale with her broken leg. She has some sort of an Imbalance going on, and is not very Happy. Dad is feeling just beside himself dealing with all of these issues.

Thank You all for stopping by and for all of your Great notes!!! We Love to hear from you, and always enjoy reading your Warm Messages of Encouragement!!!

"Through him you have come to trust
in God, who...gave him glory, so that
your faith and hope are set on God."
-1Peter 1:21

Love & Prayers

Kelly & Tom
& Family

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Lunch For Life

Today the Redwood Gazette will be doing an update on our Fundraiser!!! I talked to Jackie Lueck on Friday, and she is having a small update included on the front page today!!! Thanks Jackie and all of our Friends at the Gazette!!! We truly Appreciate all of your concern, and help to get our Story Heard!!!!

The total is about $100,000.00 and still Growing!!!! Thank You all for your Donations, and for passing the word on to your friends, our plan is working because of all your help!!!

Lunch For Life Links ~

To read about Lunch For Life CLICK HERE

CNCF ~ Childrens Neuroblastoma Cancer Foundation
CLICK HERE for online donations.

CNCF Mailing Address:

P.O. BOX 6635
Bloomingdale IL 60108

To Read what is happening "IN THE NEWS" CLICK HERE

What is Next for Carl in our Crusade ~ The Rochester News will feature a story about Carl, and the "Lunch For Life" Fundraiser we have been involved in. I am not sure the date of this, but will keep you posted!!!


Thursday, October 23, 2003 4:40 PM CDT

Good Morning, this Saturday!!

I am getting ready to fly out the door to work, but I wanted to share with you another of our Precious Angels has earned his Angel Wings. Michael Downing was treating at MSKCC in NYC and Carl shared a room with him during our first round of 3F8 Antibodies. His Sweet Mom Anne was such an inspiration to me, and a big help with Carl. We enjoyed our time together, and Carl always remembered Michaels name whenever we would see him in the Halls at Sloan from there on:) Our Wonderful Cousin Ann from Long Island, emailed me this info, I had spent some time last night trying to find the story on the NYC News links, but was unable to. This morning I opened my emails, and there it was, Ann must have been looking too:) Thanks Ann!!!! Here are two stories about Michael. Michael lost his Daddy right before his diagnosis. He was a NY firefighter.

Farewell to Brave Tyke

He's Heavens little Firefighter

In grief Strength

Please keep Anne Downing and family in your Prayers, she is such a Loving Person, Michael did not have a website, but I know all your Prayers will be heard.

God Bless

Kelly

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Good Evening to everyone!!!!

HAPPY BIRTHDAY TODAY OCTOBER 23RD TO ~ Uncle Clair Murphy!!

And to Robyn White!!! We wish you both a very Wonderful

Birthday today!!! We Love You both very Much!!!


Meet Pika, in the above picture:) This is Carl's new Puppy!!! We went to visit her tonight, but can't take her home for a couple of weeks, she is only a month old. She is a Peekapoo/Jack Russell Terrier Mix She will not get very big, as both her parents are small dogs. This is Carl's little incentive to get Potty trained:) This will be a little difficult as he will be spending a couple of weeks coming up in NY with treatments, but hopefully he will continue to work on wearing big boy undies:)

Carl and Sam both have a little runny nose, and the start of a cough going on:( I am praying this does not turn into anything serious before Carl leaves for NY. It seems every time we arrive there for treatment, Carl shows up with some sort of ailment that he brought from home:( I guess it's that time of the year when the cold and flu season starts to make the rounds. We will be checking on getting Carl, and the rest of our family covered by flu shots this year!!

I am sorry to report that we lost another of our Precious children today to this nasty disease Neuroblastoma! This sweet child Lance has been in Hospice for a long time, and we have been reading posts for many months from his Mom Justine. This has been the worst roller coaster ride that anyone should have to endure. This is especially a tough one for me to have read today. Just a day ago, Justine was telling us all that she was certain that Lance did not have very much time left. Then the next day, Lance was up and feeling better again, her next post was of pure Joy that she would have Lance to hold onto for a little while longer. Then today, I read the email subject line "Lance has now earned his Angel wings" another blow right in the gut. Please keep Justine in your Prayers at this very sad time.
LANCE'S PAGE


Please Continue to Keep little Sydney Dungan in your Prayers as she is recovering from Surgery. SYDNEY'S PAGE

Please keep John Frank In your Prayers, as John continues to recover, and bring joy to all his family as they witness the Goodness of the Lord JOHN'S PAGE

Thank you all for checking in on Carl and our family!!! We appreciate your Love & Support, and Powerful Prayers that continue to Bless our lives with Carl's health and Happiness!!! God Bless you all

"I will restore health to you
and your wounds I will heal."
-Jeremiah 30:17

Love & Prayers

Kelly

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I will continue to post "Lunch for Life" information and links, as we are still working on our goal!!!

"Lunch For Life" CLICK HERE

CNCF CLICK HERE

CNCF ~ (Childrens Neuroblastoma Cancer Foundation) Mailing address:

P.O. BOX 6635
Bloomingdale IL 60108

What is happening "IN THE NEWS" CLICK HERE

Links to some of our Childrens homepages, with photo's "Angels & Fighters" CLICK HERE

Thank You's from our Families CLICK HERE

A generous Offer from a High School friend of Mark Dungan's!!!! Donate to "Lunch For Life" without giving up your lunch:) Or consider, doing some Christmas Shopping???
A great idea and 40 percent of sales go to Lunch For Life!!!
CLICK HERE FOR DETAILS

Thank you to everyone for all of your help with our Fundraiser!!! We appreciate your support, and assistance with getting our Message out around the country!!! The word is traveling, and we are Excited that we are all a part of making a difference!!!!! THANK YOU!!!!!



Sunday, October 19, 2003 10:08 AM CDT

Good Evening to all!!!

I wanted to wish Kevin and Robyn (Gores) White a Belated Happy 1st Wedding Anniversary!! May your Love continue to grow, and flourish with every new year to come!!!
God Bless you Both!!

We are all doing well here on the homefront:) Mom got home today from Mankato, and is back at Woodale. She is in fairly good spirits considering her situation. Holly and I helped Dad bring back clothes, and other things that we brought back home a week ago:( She is in a different room, but should be able to move back to her original room in a week or so.

The kids are driving their tractors around the house tonight, and make believe farming together:) Carl got his first haircut (trim) last night!!! Dad kept saying that he really needed a little trim, because his hair is growing out so uneven, and it was beginning to look kind of shabby:( Well after seeing him with a little trim, I do agree that he looks so much better!!! I just hated to start cutting, after he just finally grew back hair for the first time in over a year:) He does look like a little Doll, but I guess I have always thought that, even as a little baldy:)

Mark your calendars for Friday October 31st (Halloween) our Lunch for Life Crusade is Going to be aired on National TV for the first time!! Pat Tallungan, the founder of CNCF, And another fellow NB Mom, Ann Folan with her son Danny will be featured in an "Unsung Heros" Segment. This will air on WGN-TV between 9-10 Pm and is subject to time changes. This will also be aired on Direct TV several days, at different times. I will update with any changes if I learn of any. This will be a big step toward getting our story moving Nationally!!!!
Pat said that the reporter started to ask questions about her son Nick, who she lost to NB in 1999, and the tears started to flow. How very difficult that would be, I think I would start bawling if I ever got on TV, just because I feel so strongly about what we are all doing for our Children!!! This is truly an Awesome Fulfilment that we all have our hearts in very deep!!!

Carl's story in the New Ulm Journal is now available online. You may page to the bottom to find the link, then click on Lifestyles, then click on Oct 20th

Please keep Sydney Dungan in your Prayers tomorrow, as she will be having surgery to resect her tumor. Say some extra Prayers for an uneventful surgery, and a speedy recovery!! SYDNEY'S PAGE

"Pray for us as well that God will open
to us a door for the word, that we
may declare the mystery of Christ."
-Colossians 4:3

Have a Great Evening everyone!!!

Love & Prayers
Kelly
*************************************************************

Hello this Monday afternoon!!!

A quick update, and request for Prayers for my Mom, Dorothy. Mom fell last night at home (She came home from Woodale last Tuesday, not even a week) she was transfering from the recliner to her wheel chair, and fell and broke her right leg in two places. She was taken to Mankato, where she is having her leg casted today. She will wear a full leg cast for several months, and will need to return to Woodale for this period of time. She will not be able to transition to home again, unless she is allowed 24hr nursing care. Dad will be checking into the home health care situation, to see if that would be allowed. Please keep Mom & Dad in your Prayers, as they sure could use some extra right now!! Thanks Everyone!!!

Love
Kelly
************************************************************

Good Morning on this very Beautiful
Sunday!!!

Welcome to Carl's Corner & Thank you for Stopping by!!!

We are truly Blessed to have this Beautiful Warm Weather to enjoy, for a little while longer!! Carl and Sam just left with Dad to do some farming:) This time of year, the kids are (farming crazy) Sam snuck a little John Deere Tractor in his coat today on our way out the door for church. Then brought it out after the service started:( The two little boys, messed around most of the Mass, and were actually very naughty, if you can believe that;?) We are always Thankful that our Church family is so Very Forgiving:)

The guys will be combining Corn at home here today, so Sydney and I will be making one of their favorite Lunch's to take out to the field. (Chili Dogs) They really rave about them, but I just think they are so hungry that anything would taste good to them:) Then we will be getting ready to watch the "VIKINGS" take on Denver!!! Bryan already has his spot in front of the TV, all ready for the big game!!! GO VIKINGS!!!!! (since we can't root for the Twins anymore:( For our NY Relatives, and our little buddy Eric Fisher in Dubuque Ia, (The Biggest Yankee's fan) GO YANKEES!!!!!!

We want to wish all of you a Wonderfu Day!!!!

Prayer Requests~

Dave Woodford's father passed away yesterday. Please keep Dave & Gloria, Daves Mom, and all of the Woodford family in your Powerful Prayers.

For John Frank~ Please keep your very Strong Prayers coming for John, and the whole Frank family!!!! John is doing so very good, It is such a joy to read the daily Journals of his wonderful progress!!! JOHN'S PAGE

Please keep all of the children fighting Neuroblastoma in your Prayers, Pray for all of the little Angels that have been called home to be with Jesus, and for their parents that miss them so terribly.

God Bless You All

"My Son, attend to my words; incline thine ear unto my sayings. Let them not depart from thine eyes; keep them in the midstof thine heart. For they are life unto those that find them, and health to all their flesh. Keep thy heart with all diligence; for out of it are the issues of life.
Proverbs 4:21-23


Love & Prayers

Kelly & Tom
Bryan, Sydney
Sam & Carl:)

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"Lunch For Life" 10,000 strong, and $80,000.00 so far!!!

Thank you all for your donations, your help with this project, for all of the Love & Support of our Devotion to change the world of NEUROBLASTOMA as we know it!!!! NB can become curable, and We are dedicated to "Keep up the Fight"
for our children and the lives of future generations!!!!

To read about "Lunch For Life" CLICK HERE

CNCF ~ Childrens Neuroblastoma Cancer Foundation, donation page CLICK HERE

Address for Mail in donations:

CNCF
P.O. BOX 6635
Bloomingdale IL 60108

Visit a Page featuring our "ANGELS & FIGHTERS" CLICK HERE

Read Thank You's from our Neuroblastoma Families for helping us in our Crusade CLICK HERE

A Generous Offer from a Highschool Friend of Mark!!! A new way to donate without giving up your lunch!!! CLICK HERE

Read how "Lunch For Life" is making its way around the country "IN THE NEWS" CLICK HERE

Carl's story was ran in the NEW ULM JOURNAL today Sunday October 19th!!! A very nice story of Carl's journey with NB, and about our Crusade "Lunch For Life" the Journal also features several Color Photo's of Carl, and One of Sam & Carl riding on their Gator this summer!!! Very Cute:) Thank You to Fritz for doing such a Fantastic Job on your Lifestyles feature of Carl!!!!! Much Appreciated!!! The feature has not yet been added to the New Ulm Website, but will be soon I'm sure. You may check there later at
NEW ULM LIFESTYLES FEATURE OF CARL

I am still looking for any new ideas to get our word out about "Lunch For Life" and "Neuroblastoma Awareness" please feel free to email me privately with any ideas!!!! We Love to hear from you, and are very appreciative for all offers of any Help!!!!! THANK YOU!!!!!


Thursday, October 16, 2003 7:01 PM CDT

Saturday Morning Update.

Hello to all, and Thank you for stopping by and visiting Carl's page:)

We are all doing well here on the home front!!! Carl is coming along Great with his potty training:) Sydney has been such a Wonderful helper!!! She made him a little sticker chart yesterday, and it is working very GOOD:)

It sounds like a Beautiful day is instore here in MN!!! Enjoy!!!!

I am sorry to report that another little boy Justin Armenio, battling NB has lost his battle, but is now in the comfort of Angels & Jesus. Please keep the Armenio family in your prayers. JUSTIN'S PAGE

Eric Fischer's scan was clear!!!! Praise the Lord, and Thanks to all our Prayer Warriors for Keeping our friends in your Powerful Prayers!!!

Have a Nice day:) Squeeze your children tight, and tell them how much you Love them!!!!

Love & Peace

Kelly

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Hello this Thursday Evening!!!

A busy day here on the home front. We just got back home from picking Bryan up in Glencoe. I worked today, then Carl had an Appt. at the Redwood Hospital to have his port flushed. We took off from there to get Bryan, and now we are back home:)

Dave Woodford's (who I sub for on the mail route) father was taken to the hospital yesterday after having a stroke. Please keep the Woodford Family in your Prayers during this difficult time. I know the devistation of a parent that has had a stroke, as my mother had one, in November of 1976. She continues to suffer the effects of the paralysis, that resulted from this terrible tragedy. It is so hard to see a loved one be transformed from what they were, into a person with so much taken away. It is a neverending struggle, with both physical, and emotional loss. Please keep Dave, and his family in your Powerful Prayers.

Carl did very well with his port flush at the Hospital!!! The girls there are so good with him, he doesn't even bat an eye during the whole procedure:) They keep a little prize bag handy, for when Carl comes in, and he is allowed to pick something when they are all done. Today he picked out an adorable little Black Kitty, Perfect for Halloween :?)
It is so nice to have an easy, painless procedure, and when all done, say Thank You, and Good Bye with a big Smile:) I think those nurses enjoy Carl coming too!!!

Well Bryan wants me to watch the Boston vs. Yankees game with him, so I will sign off for the night, and say have a Great Evening!!!!

Prayer Requests ~

John Frank ~ Continue to keep John and his family in your Powerful Prayers!! JOHN'S PAGE

Eric Fishcer ~ Continue to keep Eric in your Prayers, as they are waiting for test results. ERIC'S PAGE

Please keep all of the little NB fighters, and children everywhere battling cancer & other illness in your Prayers.

"Everlasting Joy shall be upon their heads;
they shall obtain Joy and gladness,
and sorrow and sighing shall flee away.
I, I am he who comforts you."
-Isaiah 51:11-12

Love & Prayers

Kelly

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"Lunch For Life" UPDATE!!!!!

To read about Lunch For Life, CLICK HERE

Carl's story, and our "Lunch for Life" Fundraiser was ran in the "MIDWEEK DEKALB" Dekalb County, IL. Newspaper on Wednesday Oct. 15th!!!! Thank You to Robyn, and Kevin's Mom for helping to get our story out there more!!!!

To see what is happening "In The News" CLICK HERE

CNCF Donation Page ~ CLICK HERE

CNCF Address:

P.O. Box 6635
Bloomingdale IL 60108

UPDATED PAGE!!!! "ANGELS AND FIGHTERS" CLICK HERE

To read Thank You's from all of our Families CLICK HERE

The New Ulm Journal is running a story in the "Lifestyle" Section on Sunday Oct.19th Of Carl, and our "Lunch For Life" Crusade

I interviewed with a Rochester News reporter yesterday, and a feature will soon be ran featuring Carl and our "Lunch For Life" Crusade!!!! I will keep you posted!!!

A Generous Offer!!! A New way to donate to Lunch for Life without giving up your lunch!!!!! CLICK HERE

"Lunch For Life" is still unfolding around the country every day!!! Many more stories in the works, and our families are motivated to Keep this going, and continue to get our word out!!! We are going to work extra hard this next week, as Mark will be spending much needed time with his little daughter Sydney, as she will be having surgery to resect her tumor. Please keep Sydney and her family in your Prayers!!!! Thank You to everyone who has donated, and helped our families to spread our story and plea. We intend to change history, and make Neuroblastoma as curable as any other cancer, our children deserve the same chance!!
Thank You for all your Love and Support during the past two weeks, and for your continued support as we march on!!!!!


Wednesday, October 15, 2003 11:55 AM CDT

Hello to all on another Beautiful Day!!!!

I sure hope this Great weather keeps up for as long as possible!!! Each day is another Gift from above!!!

This weeks begins another attempt of the dreaded "Potty training" of Carl Well Monday started out excellent, but we reverted back to pullups by the end of the day. Tuesday was about the same. Today we are armed with Brand New "Bob the Builder" Undies!!! How Exciting to pull on a pair of these brightly colored jockeys!!! Well after Carl's morning bath, we reviewed the plan for the day. I reminded Carl to let me know, when he has to go, and no Peeing, or pooping in his new drawers:) Carl with a cleaver little grin asked "Can I fluff in them"? (The Robinson children refer to passing gass as fluffing) :?) I have set our goal of Complete success for December!!! I will keep you posted:)

I stopped by Eric Fischers website today. I want to ask for Prayers for Carl's buddy Eric. He has been experiencing some pain in his back and foot. Eric is having a MRI done of his foot today. Please keep Eric in your Prayers that this turns out to be negative. Also Eric has some really cool pictures of the Yankee's added to his site, Eric got to meet Roger Clemens on their trip to NY this summer!!! Stop by and check them out!!! ERIC'S PAGE

Please continue to keep John Frank In your Powerful Prayers as John is making gains every day!!! JOHN'S PAGE

Please remember in Prayer, all of the brave children everywhere, fighting cancer.

"For surely I know the plans I have for you, says the Lord, plans for your welfare and not for harm, to give you a future with hope."
-Jeremiah 29:11

Have a Great Day Everyone!!! We Love You All!!!

Kelly & Tom
& Family

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Lunch for life CLICK HERE

CNCF ~ Childrens Neuroblastoma Cancer Foundation CLICK HERE

Check out what is happening "IN THE NEWS" CLICK HERE

Thank You's from our families CLICK HERE

This website has many of our childrens photos and links to the homepages CLICK HERE


Tuesday, October 14, 2003 6:28 PM CDT

Hello to everyone this Beautiful Tuesday Evening!!!

Thank you for stopping by to check on Carl :?)

It is so Gorgeous here today, sunny, a little crisp, but a very Beautiful Fall day!!! Sam is out of school for the rest of the week, with MEA (Minnesota Education Association) this weekend, so the little boys will be in all their Glory as they chum around outside while this Great weather holds out!!! They just pulled up to the house in their little Gator hauling a full load of Pumpkins up from the garden:)

We are waiting for supper to get done, we are having baked ziti. I was thinking that I must be missing NY:) We seem to have this alot at the "Donald House" when they have house dinners. Carl will be home for two more full weeks, before he will need to return for round five of Antibodies. This trip will be very different, as our Friends Virginia and Jay are home now, and the Hammers will be heading home about that time, and Morgan is on a different schedule too. I'm sure there will be some familiar faces as there always is. Every time we ask Carl if he is ready to go back to NY, he says NOPE. I'm sure when the time comes, he will remember the goods times that are had during a difficult two weeks of treatment.

Thank you to the little Elf that slipped some money in our car this morning for the Lunch for Life benefit!!!!

Thank You to Sara and the St. Johns Catholic Elementary Morning Latchkey Program for sending Carl all of your beautiful creations!!! He was so surprised to open the box today, and find such a treasure that your group made especially for him!!! He really loves the little Mountain Dew Car:) He used the box for a shed for a little while:) We really are touched, and appreciate your thoughtfulness! Carl is so lucky that you chose him to adopt for your project!!! God Bless you all

Prayer Requests ~ For all the children fighting cancer everywhere.

For John Frank and his family, as John continues to improve and show progress every day!!! JOHN'S PAGE

Thanks to everyone for all of your Beautiful words, and Prayers for Carl and our family!!!

"Whatever God does endures forever; nothing can be added to it, nor anything taken from it; God has done this, so that all should stand in awe before him."
Ecclesiastes 3:14

Love & Prayers to all

Kelly & Tom
& Family

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"Lunch For Life" CLICK HERE

Total to date ~ $73,632.00

Many more stories to be hitting the print soon!!!

Find out what is happening "IN THE NEWS" CLICK HERE

To go directly to CNCF CLICK HERE

Thank You's from our families CLICK HERE

To see some of our children both Angels and still fighting CLICK HERE


Monday, October 13, 2003 8:56 AM CDT

Good Morning to All!!!

We hope you had a Nice weekend, ours was very nice here!!! Auntie Joy, and Uncle Clair were home, and we got to see them yesterday in Morton for Supper at Grandpa & Grandma Robinson's!!! We had Chili, and Toasted cheese sandwiches, for those Robinson's who were not with us :?) It was a Great supper!!! The boys enjoyed playing, and digging in the dirt around Uncle Chucks shed. I give up on trying to keep white socks for these two little excavators!!! Carl spent the whole evening outside without shoes, with just socks on. They were having fun, so I guess that is all that matters. We think so often, how Lucky our children are to be making these wonderful memories at Grandma & Grandpa's house. Our Sunday Suppers have become a tradition, and a special time to gather and enjoy each other before going our own directions, and starting a new week again!!!

Thank You all for your very Loving entries in Carl's guestbook!!! This means so much to our family!!! We Loved reading all the notes from the Frank Family & Friends!! I even recieved a phone call from one of John's sisters this weekend!! We are so Happy that Carl has touched the hearts of so many people!!! We were always sure when Carl was enduring such terrible treatments, & sickness, that there must be a pretty Big Plan instore for this little man to be going through what he has. I will never forget a day, when Carl was about his sickest, he asked me "Mom...am I a good boy"? That broke my heart. I still break down and cry, every time I remember that moment. I cried right then and told him Yes you are such a good Boy, and we love you So much!!!! Perhaps we are beginning to understand what God had in mind for Carl. He is a very special little guy, to look at him only makes you smile:) He is the Ray of Sunshine in our lives!! Carl is a Gift from God, and a reminder, how we are so Very Blessed every day!!!!

Please continue to Pray for John Frank, and for his family to keep up their positive energy for John, as he must face very extensive Rehabilitation in the days, weeks, and months to come. JOHN'S PAGE

"I have now come out to give you wisdom and understanding. At the beginning of your supplications a word went out, and I have come to declare it, for you are greatly beloved. So consider the word and understand the vision."
-Daniel 9:22-23

Love & Prayers

Kelly & Tom
& Family


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"Lunch For Life" CLICK HERE

The total as of today is $67,143.00

This week, many new stories will travel the country!!! to keep updated on what is happening "In The News" CLICK HERE

Our children battling Neuroblastoma ~ CLICK HERE then go to Neuroblastoma Community and Click there.

Thank You's from our Families CLICK HERE

To go directly to CNCF Childrens Neuroblastom Cancer Foundation CLICK HERE

The address for CNCF:

CNCF
P.O. BOX 6635
Bloomingdale, IL 60108


Saturday, October 11, 2003 9:05 AM CDT

Good Morning to Everyone, and Welcome to Carl's Corner :?)

I have decided to recap Carl's conversation with me a couple of days ago, and then journal about another conversation we had last night.


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Carl was in the company of an ^Angel^

A couple of days ago, Carl said some very Shocking things to me about a Man that he had never met, at least I didn't realize he even knew his name, until that day...

Carl was watching me work on the computer, I was trying to set up a few links and didn't get the coding just right, so I was making many attempts before I finished. I was trying to add a link to John Franks page, John was in a terrible accident on August 16th 2003, and suffered extensive fractures, and injury to his head due to this fall.

We have been Praying for John and his family daily, and now that I knew how to set up these links, it would be very easy to link Johns's homepage to Carl's as many of our Faithful Prayer Warriors visit John's page regularly to check up on his progress, and offer Prayer and Support!!

I pulled up John's page to check the html address, and Carl standing behind me asked, Who is that? I replied, "That's John.....John Frank" as I continued to type. Carl then shot back with "That's Not John"!! "He doesn't look like that" I immediately stopped what I was doing and looked at Carl in disbelief....He then went on to say "He was in Heaven, then they took him to the Hospital" I continued to stare at Carl and asked "Have you seen John"? Carl replied with "Yep"!! then he said "They're saving him"

Well I am still in shock, but also believe that God does reveal himself to children, and Carl was a chosen little Angel and Messenger of God the other day!!! I remember the tone of Carl's voice, he knew very well who John Frank is and he knew his story, without ever hearing it before....

The second part of this journal, is about a second conversation I had with Carl last night. As I was looking at John's website, I pulled up a new picture that the family has just added of John in the Hospital. I could not help my curiosity, and wondered if Carl would recognize this man in the photo. I called Carl over, and put him up on my lap. I asked him "Do you know who this is"? He looked puzzled for a moment, then he looked up at me and asked "Is that John Frank"?

I said yes it is, and then I asked him about our conversation the other day. I asked Carl "Do you remember when you saw John Frank"? Carl said "Yes" with a very serious look on his face. I asked him if they were in Heaven and he said "No", I believe they were in John's hospital room. Then I asked Carl, "Were you with Jesus"? Carl replied "Yes" then I asked him "What did Jesus look like"? Carl sat and stared, and thought for a couple of seconds, and I sat there in anticipation not sure what to expect out of his little mouth next....

Carl replied with...."He had BIG wings" now at this point I am just stunned, and almost speachless, but I asked on... I was just too curious...I then asked Carl, "Was this an Angel" and Carl shook his head and said "Yes" I think he was confused about Jesus, and who he saw with wings?? I had the feeling there was so much in his little head, but he did'nt have the means to express everything. I asked Carl how old the Angel was, and he said "He was a boy" He said that he was younger, like Sams age? Thats when I was sure that he was in the company of an Angel. I asked him what his clothes looked like, and he said "White"

Then Carl pointed to the photo of John, and said, "He was standing right there". (He pointed to the left side of John's bed) But Carl was troubled about John's trach, he asked "What is that"?? several times, he asked. So I wondered if Carl saw John without a Trach? Carl also said that John was talking...I asked him what did John say to you, and he relplied "He said whats your name"? I decided to stop asking questions, I had asked so many, as Carl just sat there with the most serious look on his face. Tears were welling up in my eyes, and I didn't want him to see me that way. I truly believe his story was credible, and that Carl went to see John, and was in the company of an Angel....

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Please keep John Frank, and his whole family in your Powerful Prayers JOHN'S PAGE

I am not sure what to make of this whole experience? I have heard other parents mention that their children have done and said very phenomenal things. Some children have mentioned Jesus, and Angels in the weeks before they lost their battles and actually became ^Angels^ themselves. In a way, it kind of scares me, but also brings comfort. I really have no fear of Carl leaving us for Heaven. We would miss him terribly, and I can not imagine living without him. But I know if this ever were to happen, he would be Surrounded by the Love and Security of Angels, as they would bring him home to Jesus. I am content to believe that this phenomenon Carl experienced, was indeed God speaking through Carl, we all needed a message, something to grasp, a message that John and Carl will be healed.

Thank you all for visiting Carl's website, we appreciate more than words can express, all of the Love and Support, we continue to receive from all of you!!! You encourage us, inspire us, and give us the strength to March on each and every day!!!! We are filled with hope and Love from the Lord Above. God Bless all of you

"Take heed that ye despise not one of these little ones; for I say unto you, That in heaven their angels do always behold the face of my Father which is in heaven."
Matthew 18:10

Love & Prayers

Kelly & Tom
& Family

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To view Lunch for life information, you may go into the History section. Links are provided on my last journal.


Thursday, October 9, 2003 8:18 PM CDT

Good Evening everyone!!!!

Welcome to Carl's Corner :?)

"Lunch For Life will not stop at 10 days, It must go on"!!!

Excerpt from a fellow Warrior Mom's email this morning Friday Oct 10th 2003
LUNCH FOR LIFE UPDATE

Well, we aren't going to reach $10 Million in 10 days, much to no one's surprise, I suppose. But what has occurred in these short days has been nothing less than phenomenal. We have received phone calls from as far away as Western Australia. They've also come from Geneva, Switzerland and the United Kingdom. The mail arrives in sacks, and the foundation office is getting so many calls they had to buy a new telephone! Donations are pouring in, and the momentum is building across the country, and, obviously, beyond.

And while this effort is definitely about the money, for me it's about so much more. It's about giving hope to hopeless families. It's about giving purpose to grieving families. It's about unifying families in similar battles and dealing with similar heartaches. It's about fulfilling the personal missions of so many otherwise helpless parents, all of whom are struggling to make sense out of their child's fate with this horrible disease. Most importantly, it's about saving lives -- real lives of real children.*

An update from Mark Dungan ~ Congratulations! We have raised $50.282.00 through day 9. The mail and phone calls continue to roll in and we are still counting. We have truly done some amazing things and we have not even begun to start. Thank you for your support. We will issue a press release this morning telling everyone that the effort is continuing.*

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If this is your first time here, please stop by the "Lunch For Life" page to see how your $5.oo lunch money donation, would help in our battle against Neuroblastoma!!!
CLICK HERE

See how our Story is traveling the country "In The News"
CLICK HERE

A NEW LINK ADDED OCT 10TH ~ A place we can share some of the Amazing Emails that folks have been sending, to tell us what they are doing to Help with our Campaign!!! CLICK HERE

Visit a page with many of our Childrens pictures with links to thier websites. These children are all our Angels, both here on earth, and in Heaven with ^wings^
CLICK HERE

Our Families would like to Thank You for helping our Children CLICK HERE

Click here to go directly to the "Lunch For Life" donation page Donate in Honnor of Carl
The CNCF Address is:

CNCF
P.O. BOX 6635
Bloomingdale, Il 60108

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On the Homefront, a very busy day!!!!! I worked today, so I was away from all the action of the campaign all day. I got home and opened up about 75 emails. Things are still taking off, and the news is traveling fast!!! Lots of new stories in print are on the way, and many News spots to come!!!

Due to the overwhelming response and all of the Media coverage still in the works, the Campaign will continue until further notice!!!! Tomorrow is day 10, but since we just got started, and have not even hit the Tip of the Ice Berg, our Group of Parents will March on!!!!! We are on a mission, and will not stop just yet!!!

The Wabasso Standard News Paper ~ Serving the Heart of Redwood County, did a Story on Carl Wednesday October 8Th 2003. The story was the same as the Rewood Gazette feature with the Press Release, that I had submitted, only a Picture of Carl was included in the Wabasso feature!!! Thank You to all of our Friends at the Wabasso Standard for helping us to get this very important message out about the desperate need for Research funds for Neuroblastoma!!!

Carl is really feeling the effects of the Accutane this week. He will be walking across the room, then stop and start crying and holding his knee. My first reaction is "Ok who is fighting now"? but then he shakes his head and says "No my leg just hurts" Tylenol seems to do the trick, and he has been sleeping pretty good through the night. I was emailing back and forth with Sara Hammer yesterday, discussing the Fundraiser, and talking about our two boys Accutane Treatments. Her little boy Daniel is about identical with diagnosis, and treatment as Carl, and close to the same age. Sara mentioned that they decided to keep Daniel on Accutane for 12 months instead of the 6 months of the standard protocol. She said that there are other parents also keeping their children on Accutane treamtment for up to 12 months. As tough as this is on a child, we are all willing to try extra aggressive measures to hopefully ward off a relapse. There are never any guarantees, but we are willing to take extra precautions to keep our children in remission as long as possible, and continue Praying they are Cured!!!!!

Thank you all for stopping by today!!! Please continue to keep Carl and all of the other little brave Fighters in your Powerful Prayers!!! Please Pray for all of the children especially the past weeks and months that have so courageously lost their battle, and are now in Jesus', loving arms, away from pain, and suffering. Please join us in Prayer, that our Lunch For Life Crusade, will grow and raise these much needed funds to put research in high gear to find a cure. We Pray for a cure, so that our precious children will be cured, and cancer free forever!!!!

Remember to keep the Prayers coming for John Frank and his family, as John is steadily recovering! JOHN'S PAGE

NOTE: Caringbridge will be undergoing some changes to their server this weekend, so the site may be down for up to 72 hours:( I will update as soon as everything is up and running again!!

"His divine power has given us everything needed
for life and godliness, through the knowledge
of him who called us by his own glory and goodness.
Thus he has given us, through these things,
his precious and very great promises."
-2 Peter 1:3-4

God Bless you all

Love & Prayers

Kelly & Tom
& Family


Wednesday, October 8, 2003 9:47 AM CDT

Hello and Welcome to Carl's Corner

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I have to write this down before I loose what my little Angel just said.

I was sitting here at my computer, trying to fix some Links that I just added that weren't working, and I pulled up John Franks page. Carl was standing behind me at the moment and asked me "Who's that"???? I said "John"... "John Frank" Carl then said "That's NOT John, he doesn't look like that" he went on to say "He was in Heaven... then they took him to the Hospital" Well I can tell you, I just about fell off my chair!!!! I looked at him and asked "Have you seen John"? Carl replied "YEP" then he said "They're saving him" I wish I could have seen the look on my face!!! then he talked about John more, he told me he fell and hurt his head... I know we have mentioned John and his accident around the house, but can you believe a 3 yr old could come up with such a strong story??? And the fact that he looked at the picture of John on his website homepage, and said "He doesn't look like that" Oh my Goodness, this gave me the chills.... I just had to share this with you, because I know alot of you are also following Johns story. I added a link to Johns webpage below.
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If this is your first time here, please stop and read about our "Lunch For Life" 10 Million dollar Goal Fundraiser ~ for the CNCF Childrens Neuroblastoma Cancer Foundation to go to Curative Research.
CLICK HERE

Please remember to sign Carl's guestbook

Other Links to visit ~

Lunch For Life "In The News" CLICK HERE

Our Neuroblastoma Children, both Angels with wings, and Angels still fighting CLICK HERE

Thank You's from other Parents CLICK HERE


Thank you for stopping by to check up on our Family!!! We have been very Busy, between work, farming, school, and our "Lunch For Life" project!!!

Carl started another round of Accutane on Monday, and I am already seeing the terrible effects:( Yesterday he as tired and very cranky. He also was complaining of a head ache. I pray that the rest of these two weeks on this treatment, pass without any serious discomfort.

The Lunch For Life Crusade Marches on!!!!! Check out the In the News Link. Several more stories in Print, and Mark reported that he has had several interviews, and an upcoming radio spot!! A couple of new papers are in the works for him too!!! Around the country, parents just like us, are busily getting their stories in papers too!!! Gin Bogert in Fl. with little Payten, is being interviewed today for their local news!!! This is so exciting, I am astounded daily at how everything is really working!!! I guess you put a bunch of Determined "Parents with a Purpose" together, and Anything is possible, we will do anything for our children!!!!! Mark also said that the mail is now coming in a Bag!!!!! WOHOOO!!!!!!!

Thank you everyone for all of your Love, Support,and STRONG Prayers!!!! We are So Blessed each and Every Day!!!!!

Prayer Requests ~

We just learned of another one of our childrens passing. Beautiful Jessica Nielsen another child treating at MSKCC In NY, also from MN has earned her Angel Wings. Please pray for the Nielsens as they need to feel Gods Comfort. JESSICA'S PAGE

Joel Harmoning's Brother Curt Had a Heart Attack. Please keep him, and his family in your comforting Prayers. Curt is only 30 years old, he is in very serious condition. Please pray very hard for a full recovery.

John Frank ~ stop by Johns page and read a very cute journal about a Kiss:) John is doing well!! Keep the Franks in your Prayers!!! JOHN'S PAGE

Have a Wonderful day everyone!!!

"Let the heavens be glad, and let the earth rejoice; let the sea roar, and all that fills it; let the field exult, and everything in it. Then shall all the trees of the forest sing for joy."
-Psalms 96:11-12

Love & Prayers

Kelly & Tom
& Family


Friday, October 3, 2003 10:58 PM CDT

Hello and Welcome to Carl's Corner!!!

If you are a new visitor, please visit the "Lunch For Life" page to read about our Exciting Crusade CLICK HERE

Stop here to find out what is happening IN THE NEWS

The Redwood Gazette's story of Carl is also found here Redwood Gazette Oct. 2nd Edition features Carl's Story"


Day 7 ~ " Lunch For Life"

Total So Far ~ $30,762.00 internet donations, not in total are mail in, hand collected, corporate, or matched

This morning I am trying to compose myself after receiving notice, of yet another one of our precious babies, that has earned his angel wings.

I knew without opening the post, when the subject line read "Dalton is now walking the streets of Heaven"

Katy wrote a beautiful note, and I do believe it helped her in this coping process. She talked of a conversation she and Dalton had several days ago. She said "if you ever would go to see Jesus, you should look for Madi, and be with her and hold her hand".

Madi is another little brave fighter that earned her Angel wings a few short weeks ago. As I was reading this post, with tears streaming down my face, Sydney passed through the room. She stopped when she noticed that I was crying. "What's the matter Mom" She knew that I was reading about another child that we lost. She insisted that I read this to her. I did, but my words were broken and very hard to get out. She sat with me, in tears too, because she and I read about Madi together on another sad day. Somehow I think in my mind, that maybe if she too has a look at the reality of this Monster, it may help her with coping, if the subject line should ever read "Carl is now walking the streets of Heaven" I am not trying to scar our 10 year old daughter, but I think she is mature enough, and I certainly am so very proud of how she really seems to understand. Her and I have talked about how hard it would be to say good bye to such a sweet young child. And we have talked about their innocence, and that they go straight to Heaven.....God Speed

Thank You all for your Prayers and Encouuagement!! I have not heard from Mark since yesterday, I do believe he must be very exhausted from several interviews, and taking care of a sick little girl as her counts drop from this last round of chemo. I will update later should anything arise. You may also keep track of our progress by the "IN THE NEWS" link above. All of our Media coverage will be noted here as we continue on in our crusade!!

Just as I finished my update, and looked at emails, I received one from Mark Dungan about our Progress!!! Things are moving very well, He talked about the "10" day thing, and reminded us all that this will be more of a "10'ish" day campaign. Some of our many stories are just coming out, and so many more to follow with News and TV coverage next!! He asked that we all remind our friends to follow up with their friends to insure our "Lunch Donations" continue down the line, that is how this is all going to work!!! It seems that most people are using email these days, so if you have emailed our Plea to your address book, then a simple follow up would be a good step to keep the momentum going!!! Mark even said that some of his own friends have said "I was going to do that later" The plan will only work if we keep the story moving, and so on and so on. Thank You all that have mailed checks to our home!!! We mailed off about 6 checks that we took in here, and Mark did say that all the mail is starting to roll in now!!!! This will work if we all follow up and keep it going!!!! Thank You for all of your Help!!!

God Bless

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On the Home Front ~ What a beautiful weekend, aside from the Attack of the "Asian Beetles" It seems everywhere (in our area at least) these bugs are bugging us!!!!! They are hanging on our house, getting in the door on our hair, clothing, the kids:( This warm-up we have, we've also been blessed with these little stinky beetles that drive you crazy!!! The kids don't really seem to mind too much, they are so happy to get out doors and run around without bundling up first:) Carl even broke out his little sandles again!! He told me "Mom...I can wear these...I'ts not too cold out" :?) I guess we need to enjoy the warm breeze while it lasts, we all know too well what is next.....

Have A great Day everyone!!!! Thanks for stopping by Carl's site, and as always, Thank you for your continual Prayers!!!! With all of our Prayer Support, our Lunch for Life project will be our Dream Come True!!!!

To read Thank You's from other "Lunch For Life" Families CLICK HERE

To see our Childrens Faces CLICK HERE

Check out the photo of the boys farming with Uncle Chuck yesterday!!! (in the photo section)
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Miracles do happen by Tony Pasma ~ A fellow NB parent

Miracles do happen.
Just look around, you'll see.
People are taking action.
Theyre responding to our plea.

A snowflake falls, innocent and true.
It's purpose in this world still inside.
One day it bonds with many.
The power unleashed, cannot be denied.

Lunch for Life, a noble challenge.
The reaction, truly astounding.
Supporters of all kinds, near and far,
Their contributions are compounding.

We stop for a moment just to say thank you.
Then off we go to continue our crusade.
Oh Lord, let this wish come true,
As one family we have prayed.

In Mark's update Friday night, he told the group that things are moving very nicely. He was on the phone all day (Reporters calling him) he said that he is aware of a couple of segments that will be running on regional news and morning shows.

It has been so rewarding to be involved in this effort. I have never felt such a satisfaction for something that I believe in so strongly. In another parents email Friday, she said "I have not felt this good about anything for months" We all share a common understanding for such a simple statement, and it is so powerful. This has been such a wonderful experience working with our other NB families!!! We have shared eachothers happiness, and sorrows over time, but now this is a feeling like none other, and I think we are all feeling it together!!!

I will list again the "Lunch for Life" donation options

For online donations go to to ~

Childrens Neuroblastoma Cancer Foundation ~ Donate in Carl's Honnor

To donate by Mail ~

CNCF
P.O. BOX 6635
Bloomingdale IL 60108

By Phone ~ talk to a live person you may call

1-866-671-2623 or 1-877-795-7948

Thanks for all of your help everyone, keep talking to your friends and tell them about Carl, give them his website to visit, then tell them to also spread the word!!!!!

We are still open for any ideas on how to get the word out. I have got several offers from people to take Carl's story to their local papers and that is Great!!! drop us an email if you have any others. Thanks Everyone for your Efforts!!!

Love & Prayers

Kelly & Tom
Bryan, Sydney
Sam & Carl


Wednesday, October 1, 2003 2:32 PM CDT

WELCOME HOME TWINS!!!!!

Minnesota Fans are Proud & Loud in the Metrodome ~ So Bring on the Yankees :?)

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Day 3 "Lunch For Life"

Total for day 2 was ~ $8190.00!!!!!

This total does not reflect donations given to be matched, donations collected in person, or donations mailed to CNCF, only phone in, and online donations!!!!!

Thank You So Much For all of your contributions, and generous offers to
help by spreading Carl's story to many different outlets!!!!! We are very pleased with what is happening so far!!!

In yesterdays update from Ill. we heard of many things going on out there!! The "Lunch For Life" story is traveling fast. Keep your eyes and ears open, we are not sure what will transpire next!!! Some companies are getting all of thier employees to donate a Lunch, then the employer is matiching Funds!!! If you think this is something your employer would consider, by all means present this to them!!!!

Any Idea we can come up with is definately worth a try. I would like to add, for people making donations, you may make them "In Honnor of Carl" the online donation form, has an Acknowledgement box, to indicate either In Honnor of, or In memory of. If an Acknowledgement is checked, then a card will be sent to Carl to indicate your donation!!!

Suggestion: Please Drop us an EMAIL tkranch@rconnect.com with the Subject ~ (I gave up my lunch for Carl) We then can keep track of some of "Carl's followers" contributions!!!

Thank You So Much for taking an Interest in what we are doing, and by helping our family be a Big part of this campaign!!!

I will update later today with any further reports or "Breaking News"

We Love You All!!!!

Kelly & Tom
& Family
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Thursday Afternoon ~
Just a quick note Ann Folan reported
that the story was not done today, due to not enough time. Danny's whole story and our plea will be aired on WGN (720 AM WGNRadio.com) tomorrow Friday at 1:10pm this would be Chicago, I am still not sure about the twin cities? If anyone knows what station Steve Cochran is on, please let me know!! Thanks:)

Thanks Jackie Robinson for your offer to contact several papers to run Carl's story!!!

The New Ulm Journal contacted me today about doing Carl's story too!!!

We are getting the word out!!!! And all of your help is going to make a difference!!!! Thank You all from the bottom of our Hearts. Every time I opened my email today, the tears were flowing, I was so touched by the outpouring of interest in Helping us to reach our goal!!!! You are all helping us to fulfill our deepest desire to "DO SOMETHING" From the very beginning, all I could think about was "What can we do, we have to do something about this"? Now we are blessed with the opportunity to pursue that desire, and it is HAPPENING!!!!!!! I Can't wait to see what todays totals are!!!

Have a Great Night Everyone!!!

GO TWINS!!!!!!!!!

Love to all
Kelly
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New Update ~ One of our NB Moms
emailed her son Danny's story to WGN Radio, and she received a reply from Steve Cochran, he is going to do a feature "Child Of the Week" of Danny's story, so if anyone can find this in their area, try to tune in at 2:40pm today!!!!!

Way to go Ann!!!! This is Huge, you are right, alot of people will be listening with all of the Cubs action going on!!!!

I think the twin cities station is 101.3 KDWB I will try to tune in, but our coverage out here in the boonies is pretty limited:(

Good things are Happening!!!!!!!

Thanks Robyn for your offer to help get Carl's story out in a few newspapers!!! I was so touched when I read your email, I feel so rewarded that what we are doing is really Inspiring so many of you to want to be a part of this Exciting crusade!!!!!

Thanks Everyone for all of your help!!!

Will let you know If I hear any more breaking news!!!!!

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Day 2 of "Lunch For Life"

Good Morning to all!!!!

What a Great First day of "LUNCH FOR LIFE"

First day total = $4527.00

That is just Excellent!!! I have a sample of what one person could do, this is the Mechanics:

Day 1 1 person asks 5 friends to donate 5 dollars Total:$25.00

Day 2 Those 5 people ask 5 of their friends to donate 5 dollars Total: $125

Day 3 Those 25 people ask 5 of their friends to donate 5 dollars Total: $625

Day 4 Those 125 people ask 5 of their friends to donate 5 dollars Total: $3,125

Day 5 Those 625 people ask 5 of their friend to donate 5 dollars Total: $15,625

Day 6 Those 3125 people ask 5 of their friends to donate 5 dollars Total: $78,125

Day 7 Those 15625 people ask 5 of their friends to donate 5 dollars Total: $390,625

Day 8 Those 78125 people ask 5 of their friends to donate 5 dollars Total: $1,953,125

Day 9 Those 390625 people ask 5 of their friends to donate 5 dollars Total: $9,765,625

Day 10 Those 1953125 people ask 5 of their friends to donate 5 dollars Total: $48,828,125

So as you can see we are off to a GREAT start!!! This can be done with all the combined effort from all of our friends!!!

Thank You Jeri, for your offer to take Carl's story to your Paper:) That is just fantastic, the more coverage of our "LUNCH FOR LIFE" crusade gets, the better chance of making this a Success!!! This Is Possible, It can Happen!!!!

If anyone else has any other ideas to get our word out, please contact me!!!


We are all set to watch the Twins VS Yankees tonight :?) Last night on the news, Kare 11's Eric Perkins was out in NY running around on the streets talking to people about the Twins and how the Yankees are really under pressure :) It was very humerous!! It should be fun!!!

Otherwise everyone else is doing great here. Carl and Sam went to daycare yesterday. It was so adorable when I walked in the door to pick them up. Carl was sitting in the kitchen at a little tykes picnic table with three precious little girls coloring. They were so adorable, they looked like little angels sitting there:) And of course sweet Josie was one of them;) I told Jeannie that I wished I had a camera at that moment:)

The weather here is very cold, I think I heard 24 degrees just now on the radio YIKES it is only October 2nd :?( But I heard that it is supposed to get back up to the 70s by next week!!!

Have a Great Day everyone!!! Keep talking to your friends, and pass the word along about our very Important "Lunch For Life" We appreciate more that words can express, all of your support, this means So much to us knowing that such a HUGE world wide effort is happening, and will surly make an impact for all of our kids suffering with this deadly cancer.

God Bless You all

I will update later if I receive any further emails with another TOTAL!!!

Love and Huggs to everyone!!!

Kelly & Tom
& Family

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"LUNCH FOR LIFE"

Many families with children fighting the fight of thier lives against Neuroblastoma, have been communicating for many months and trying to come up with a "BIG PLAN" to raise funds to go to the CNCF ~ CHILDRENS NEUROBLASTOMA CANCER FOUNDATION which is a ~ 501 (c)(3) non profit organization, based in Bloomingdale, Illinois, dedicated to education about, support for, advocacy of, and research into cures for Neuroblastoma. The organization was formed by Milton and Pat Tallungan who lost thier son Nicholas to Neuroblastoma in 1999. The foundation is governed by a board of parents, researchers, and physicians.

One of our fellow Parents Mark Dungan, father of 2 yr old Sydney from Fort Worth Texas, came up with the Idea:

"Lunch For Life"

What this all involves, is asking all of our faithful followers of Carl, to donate five dollars each - the equivalent of one person's lunch for one day to the CNCF in hopes of raising

$10 million dollars in 10 days!!!!!!!!!!

families across the world today have all joined together as an Army of Parents of Children with Neuroblastoma, and with all our combined efforts and the Love and Compassion from all of our "Faithful Followers" we are trying to get this done!!!!! This story will unfold in all corners of the United States, and around the World starting today October 1st 2003, and we hope our efforts will change the world of Neuroblastoma forever!!!!!

The next step is for everyone donating $5.00 to ask five of thier friends to also donate $5.00 and so on and so on.

I have a webaddress for you to go to, Mark has put together a "Lunch for Life" page that goes into much better detail than what I am giving you here right now.

go to http://www.sydneydungan.com/lunchforlife.htm

You may want to bookmark this site, I am trying to get a link here, plus a link set up for the CNCF website which is

www.cncf-childcancer.org

On the CNCF website you may find thier mailing address for mail donations, also I will list it here:

Checks may be made out to CNCF

CNCF
P.O. BOX 6635
Bloomingdale IL 60108

Donations may be made on the CNCF website, by mail, by phone talking to a live person call 1-866-2626 or 1-817-846-6085

If you would like to mail a donation to our home, we will then forward it to CNCF

Lunch For Life c/o
Carl Robinson
69118 370th St.
Franklin MN 55333

A story will be ran in the Redwood Gazette tomorrow, and I have sent my Press Release to several papers. Mark sent my story to the Regional Associated Press office this morning. We are not sure what will happen with all of the Press coverage going on everywhere, but I am very excited to find out!!!! We are Expecting very Great things to come from all of this!!! What we all hope to accomplish is to be a part of a cure being found, of better statistics for future generations of children being diagnosed with Neuroblastoma. We would like to know that when a child is diagnosed with this lethal cancer, their parents will be told that their child will be cured, or at least have a good probability of survival!!!

I feel so good about what is happening here today, This is something that I have wanted to be a part of but never had the opportunity, as it has never been attempted before. We all have to join together for the sake of Carl, for the sake of all of the other children fighting this terrible disease, for all of the next children, and grandchildren that may be diagnosed maybe in a couple years, or maybe tomorrow.... we just never know who will be next, this cancer does not discriminate it can happen to any child, and to this day, there is no known reason. Research funds are what is needed before we ever can find the answer, or a cure.

I will be updating often about our progress. I will be receiving several emails daily from either Mark or Pat and will post our "Totals" we may not have all of the numbers totaled for several weeks, as the mail in donations will take longer to get there, but we should have figures from the online donations!!! This is so exciting, I hope you all are feeling this too!!! All of our efforts could just possibly be the ticket to a new treatment that we may have to consider if Carl should ever need one.

One more thing, if anyone would be interested in your local paper doing this story, and you would like to help out by getting this out to the media? please contact me right away. I will be Happy to email you, our Press Release and Carl's photo to be included!!!


Thank You all and God Bless you for all of your Help!!!

Love & Prayers

Kelly & Family


Wednesday, October 1, 2003 7:24 AM CDT

Good Morning everyone!!!!

Happy October 1ST!!!!!!

Today is the day we hope to change History for all of us with.... Childhood Cancer Neuroblastoma!!!!!!!!

I don't have time to go into detail, I got called to work this morning and have to fly out the door:(

I will update as soon as I get home today. I can tell you that this story is a BIG one, and about to unfold all over the world today!!!!!

I will be asking for all of your help, as Faithful Followers of Carl's Journey, and I know I can count on everyone of you for this!!!!! It is very simple, but will be VERY EFFECTIVE!!!!!

Until Later, Thank You and God Bless+

Love

Kelly & Family


Tuesday, September 30, 2003 8:35 AM CDT

Good Morning to all of Carl's faithful "Journey Followers"

A couple of new photos added!!!

All is well at the Robinson home! Carl is still sleeping, but I'm sure I will be hearing "Mom...I want to get up"! very soon:) A couple of nights ago, I went in to cover Carl up, as he was calling out "Mom....cuber me upppp"! Well I lifted up his blanket, (g-tube on top of blanket) and guess what happened next....(g-tube came with blanket as I lifted it up) :( Never fear, Dr. Mom & Dad were ready and prepared with a spare Mic-Key button kit, we were sent home with the last time Mom pulled Carl's button out!!! We were beginning to wonder if we were ever going to perform this procedure (ourselves since we were now ready for any emergency) It has been five months since the last change-over:) and Carl will be undergoing a G-TUBE-ILECTOMY (If such a procedure exhists?) in November YEA!!!!! It will be good to have his little body, almost back to a normal 3 (almost 4) year old little body:) Lastly we will have to get rid of the (Port) but that will not happen anytime soon, it will stay in place until Carl completes all of his antibody treatments. Which may be close to, May of 2005 if all continues to go as well as it has!!!

I have been very busy, working on a project with other parents of children afflicted with Neuroblastoma like Carl. This has been something long and coming, something that all of us parents have been wanting to do for a very long time..... Something that could make a difference in the lives children in the future that will be diagnosed with this same deadly disease. We all want to be a part of future generations being told at diagnosis that their child will be cured, or at least a high probability of survival!! We continue to get news almost every day, of another child who has lost his battle, and has earned thier ^Angel^ wings.

September is National Childhood Cancer Awareness month, this project has been worked on extensively by one of our fellow ACOR-Listserv parents, and then was presented to parents in our group, and those that wanted to, were invited to join in this effort!!!
The timeing of this project was precisely set for Oct.1st, and we all agreed to keep this quiet, until all of the details are in place. I will be able to talk more about this in the next couple of days.....

In the meantime, I would like to leave you with some food for thought.... (On Funding Research) what our groups common passion is all about...

" The fact that one has been blessed with healthy children and never had to face the painful growth you have....That is the reason to fund research. As acknowledgment of the blessings we have received and as a show of compassion for those who had to walk that long, dark, and lonely road....That is the reason to fund research. Because one has walked that road and has a child who survived....or has burried their child, the heart of their very heart....That is the reason to fund research. Because we are all God's children and we are to Love one another. Because, whether we knew you before or not, we are united in suffering....That is the reason to fund research."

"You fund research because the next child to receive this diagnosis might be yours, or your grandchild and then it's too late to throw your own money at it and you'll be praying that someone else funded research in the past"

"The pebble you throw into the waters of eternity have a way of causing ripples beyond your lifetime, so you may never fully appreciate the effects of your efforts. Someday, some child whose life was lengthened by newfound treatment may well do something that will forever change history."

Quotes borrowed (without permission, sorry ~ and Thank you Mark) from another parents journals.

Prayer Requests ~

For John Frank as he is steadily recovering and doing very well! www.caringbridge.org/mn/johnfrank

For Chris Johnson, one of my best friends, that was just discharged from the hospital from surgery, and was re-admitted for an infection. We pray for your speedy recovery Chris!!! We Love You!!!

Have a Great Day Everyone!!!! It looks like a Sunny (cool) Beautiful day is instore here in Mn.!!!

Oh Praise the Lord, for he has listened to my pleadings! He is my strength, my shield from every danger. I trusted in him and he helped me. Joy rises in my heart until I burst out in songs of praise to him.
Psalm 28:6-7

Love and Prayers

Kelly


Sunday, September 28, 2003 7:36 PM CDT

Good Evening to everyone!!!!!

This weekend was very nice:) It was good to see Auntie Jill, Kiri & Nick-ie:) We went to the Fall Festival in Redwood, but nearly froze our tootsies off, so we didn't spend alot of time there. The boys stayed with Grandma Phyllis, and Kiri & Syd for the morning. Then Auntie Jill, Auntie Sheila, Auntie Janet and I went shopping:) It was a fun day!!! Tom and I got out later that night, and Nick-ie stayed with the boys, they just Loved that!!

I recieved a special "Mom" gift in the mail a couple of days ago, from Krista Daniels. I used to work with Krista at the Gazette:) Krista took a photo that I had on the front page of the website, and she worked with it, and printed it onto a canvas material. It is so nice. It was a picture of myself, holding Carl after the Morgan Parade:) We had our "Carl's Commando's" shirts and hats on that day, Carl is looking over my shoulder and he has a little somber look on his face (he was tired from the parade) Krista also sent me a copy of a story she wrote in the Wabasso Standard on Wednesday July 23rd. It is a story about Carl. I am so Happy she sent this to me, I had no Idea that this story was done:) I would like to share this with you too!!!

The Year Of Carl

In August of last year, we received a phone call at the Gazette that one of our former co-workers, Kelly Robinson, had just found out her son, Carl had cancer.
He had been diagnosed on Aug. 18, 2002 with Stage IV Neuroblastoma, which is a very rare, aggressive, high risk childhood cancer.
The news hit me really hard even though I had met Carl only once. Partly because I had been through the situation of a critically ill child myself; partly because two of Kelly's boys were born within a year of my two boys, so they are close in age; but mostly because Carl is only two years old. What kind of a God would do that to a little boy? What reason did He have?
A web site was set up through the hospital so that we could all log on as often as we wanted to keep up with Carl's progress. Kelly did a great job of keeping a journal every day and tried to update the pictures as often as she could.
Little Carl endured six rounds of chemotherapy, then in December he had surgery to remove the remains of the tumor. In March, he received an Autologus Stem Cell Transplant and shortly after that, started radiation treatments.
The Robinsons moved Carl from his treatments at the Mayo Clinic in Rochester to the Memorial Sloan Kettering Cancer Center in New York City, where he is now undergoing Monoclonal Antibody Therapy and receiving Accutane.
That is a lot of pretty rough medical treatments and a lot of big words for such a little boy. But Kelly says that most of the time, he is a little trooper, putting up with everything.
The Robinson Family created Carl's Commandos for this year's Relay for life, and since Carl is able to be home right now, he took his "Survivor Lap" last weekend at the Gilfillan Farm during the Relay for Life Event.
Peach, B and I went out to the event to watch this little survivor triumphantly walk around the track with his Mommy, his big brother Sam and his fellow cancer survivor and friend, Eric Fischer. What a moment it was. It was hard not to get emotional when you thought about not only Carl, but all the other survivors who were there, taking their lap, and what they had been through to get there.
I still don't know why God chose this little boy to suffer such a fate, but I do know that God always has a plan. I know He must have a great plan for Carl and only time will tell what that will be.
And on the way home from the event, I was reminded how big a force God really plays in our daily lives when Peach asked how the cancer had gotten itself out of Carl's body. I reminded him of all the treatments that Carl had been through like Chemotherapy, Radiation, Surgery, etc. And then he said, "And Mommy, don't forget about all those prayers. They really helped the most."


I also have a little Poem that Krista later emailed to me:) I think all of you teachers, day care providers, S.A.C., Latch Key teachers will enjoy this!!!

"Mine, Mine, Mine" Poem

"Property Laws of a Toddler"

1. If I like it, it's mine.

2. If it's in my hands, it's mine.

3. If I can take it from you, it's mine.

4. If I had it a little while ago, it's mine.

5. If it's mine, it must never appear to be yours in any way.

6. If I'm doing or building something, all of the pieces are mine.

7. If it looks like mine, it's mine.

8. If I saw it first, it's mine.

9. If you are playing with something and you put it down, it automatically becomes mine.

10. If I give it to you and change my mind, it's mine.

11. If it looks like I might like it at a later time, it's mine.

12. If you saw it first but I like it...It's mine.

13. If I break it and you find it and fix it, it's mine.

14. If I have one and you have one and I lose mine, yours is mine.

15. Heck, even if I don't lose mine, yours is still mine.

16. If you got it for your Birthday and I want it, it's mine.

17. If I don't even want it but you have it, it's mine.

18. If it's broken, it's yours, you can have it!


Thank You Krista ~ for bringing out both tears, and laughter:) Your Story was very touching, The Relay was not that long ago, but reading your story brings to mind what our whole purpose was with the Relay, and something we can't forget.... To Fight For A Cure... that is what our mission is!!!!!

Thank You everyone for stopping by!!! Please know that we feel So Blessed every day, to know that we have your Strong Forces of Prayer coming our way!!!!! God Bless You All+

Love & Prayers

Kelly & Tom
& Family


Friday, September 26, 2003 6:09 PM CDT

Good Evening this Friday!!!

We hope you all had a good week, and a Happy Friday!!!

It is quiet at the moment, Carl is napping, and Sam went with Dad to do chores:) Carl seems to be more tired on the days Sam is in school, I think he actually pushes himself when they are together, and will never let on that he is tired. They play so hard on Sam's off days, then Carl is tired and very clingy on the school days. He can always use a little nap, so I cautioned Sam as he flew in the door today, to let Carl sleep as long as he will.

Today I joined Sam and his class for their field trip to Holmberg Apple orchard:) It was a fun trip, even though we got rained on during the Hay-ride:) I think my favorite part of the whole thing, was when I arrived at school and entered the classroom. Sam spotted me, and watched me sit down at a little table out of the way:) When he caught my eye, he had a grin from ear to ear, that nobody could wipe off his face:) It was very sweet, and a moment I will always remember:) This is such a very precious time of thier lives, and a very short time for them to enjoy having Mom be there with them. Before long It will be too embarassing to have Mom show up at school, and heaven forbid hold hands and sit with on the bus:) For right now, I am Happy to have the chance to be there and steal these short moments.

Carl enjoyed a couple of hours at Jeannies daycare, and then the two of us visited our friends at the Redwood Gazette!!! Whenever I get to visiting with the girls, I realize how much I miss working with them. Of all the jobs I have had, I do miss the company of these girls the most, we used to have some pretty good times, and we always enjoy stopping back in and catching up, although I know they follow Carl's website very closely:) It is Great to know they are always with us!!! It is good too, that they overlook the curious behavior of my two boys when they come along:) I think it gives them something to chuckle about after we leave:) The boys are experts at seeking out, and helping themselves to whatever they can uncover (candy, doughnuts, what have you?) LOL Krista has two little boys just about the same ages:) Very adorable too!!!

Auntie Jill, and Nickie & Kiri are coming later tonight for the weekend:) Congratulations to Kiri for making the "National Honor Society"!!! The old Fashioned Fall Festival is going on up in Redwood tomorrow, so I think we will be checking that out!! Nickie wants to do some farming with Uncle Tom:) It will be fun to see everyone!!! They have not seen Carl since his hair has grown back, just a little stubble that was there when we met at the State Fair. The weather is sure cooling off, it is really feeling like fall now. I am still hoping for an "Indian Summer" We will see.....

Hey Jen & Jes ~ Let us know if you are still having a Bon Fire Saturday night:)

Thanks for stopping by, we always appreciate knowing that you are with us in thought and Prayer!!

This is a Poem that another parent on the NB listserv shared with all of us, I wanted to share it with you too...

Cancer - A journey in Self-Discovery

It does not sleep.
It does not discriminate.
A monster called cancer shares this room with us tonight.
In the deepest, darkest recesses of my mind, it
haunts me.
With indignance, it quietly seeks to consume.
Its chains bind his body, yet we see it cannot detain
his spirit.
Let him go I think.
Let him go I pray.
I look for answers, but see no guarantee.

In a constant vigil we fight back.
Just as the ocean wears away at the shore, we fight back.
We will not quit.
We cannot quit.
For somewhere in the fog of this journey lies the
answer to who I am.
At times I think the unspeakable, but refuse to go
there for long.

The fire of my soul burns dim this moment, but it's
still there.
His smile lights the darkness and provides my path
back to hope.
I look for answers, but see only the moment.

The silence conducts my thoughts and my loneliness
questions the path.
With time I know I will understand.
For now I simply trust, there is nothing else.
Each step into the unknown tests my faith.
Yet I confidently take the step knowing I will be
given firm ground or angel's wings.
Walking this path is clearly a journey.
Through it, I am challenged to discover my true nature.
I look for answers and finally realize, I must simply
believe.

From Tony

We Love You all!!!

Kelly & Tom
Bryan, Sydney
Sam & Carl


Wednesday, September 24, 2003 8:11 PM CDT

Good Evening this Wednesday!!!

HAPPY BIRTHDAY TO ~ My Mom (Grandma Dorothy Greer) today!!!! Tomorrow Woodale is having a Birthday party for the September Birthdays, so we will be there to Help Grandma Celebrate!!!!! Holly and I took Mom to have her hair done for her Birthday gift, and she looks very nice!!

Today Carl was just not feeling himself:( He went from his bed, to Mom & Dads bed, then the couch, then back to Mom & Dads bed:( He rested most of the day. I am suspecting Accutane is the culprit again.

After school today, Sydney and Sam came running to the house with the mail:) Carl had a very Special box addressed just to him, from his friend "Bob the Builder" :) He shot out of bed like a cannon to open his Surprise!!! Carl received some really fun stuff including an autographed book, from "Bob" himself, it reads
"Can Carl Do It...Yes He Can! Love Bob the Builder
Thanks So Much to "BOB" ;?) Carl Loves you too!!!!!

I received an Email yesterday afternoon from Dr. Kushner. Carl is still HAMA Negative!!! Very Good News, we are very pleased that Carl can continue on schedule with the antibodies, and is getting full benefit from the treatments. I also asked about having Carl's g-tube removed in November, he said this made sense to go ahead and do!!! I am trying to get all of Carl's appt.s set up for the last week of Novemeber at Mayo. The month of November will be very full, between the two and a half weeks in NY for antibodies, BMA & MIBG Scan, then when we return home, off to Rochester for the rest of Carl's workup.

We are listening to the TWINS again tonight:) We did enjoy the game last night, and we are very Excited to find out if they will be playing the Yankees!!! That will be Interesting!!! Carl's friend Eric Fischer is one of the Biggest Yankees fans on Earth:) While he and his family were in NY a couple of weeks ago, they got to go to a couple of games, and Eric actually got to meet Roger Clemmens!!! A dream fulfilled for Eric!!! I do enjoy this excitement, but it just is not the same (TWINS) without Kirby P., Dan Gladden, Kent Hrbeck, (Excuse my spelling HeeHee) :)

Well I had better go fish these two fish out of the tub before they flood out the bathroom:) There is just too much giggling going on in there!!!

Have a Great Night Everyone!!!!

Love to All

Kelly


Tuesday, September 23, 2003 5:12 PM CDT

Good Evening to all!!!

Thanks for stopping by, and for all the Great Greetings:) We really enjoy reading your notes, and seeing your names out there in the guestbook to go along with those numbers that keep rising daily on the counter!!! It means so Much to us!!!

NEW PICTURES ADDED!!!!!

What another Beautiful day today!!! I heard it got up to 70 today?? A Perfect First day of Autum, If we could only bottle the moment to let it out in January:) These days are very treasured here in Minnesota, we know they are only borrowed, and before long only a fond memory:) But we will take all the pretty Fall days for now, and try to enjoy them to the fullest!!!!

Carl and Sam have had a Perfect Play day today, I can't say that I had to break up even one fight!!! They have been up to some digging outside in the front yard lately:(
They actually got a shovel out and were digging a hole!!! I hadn't realized they were doing this, but once it be known, they were reminded 100 times a day "NO DIGGING" each time they go out the door, I ask them "OK what are we not doing outside" and they reply in unison "NO DIGGING" LOL just this afternoon, I looked out the window, and found them with thier little farm equipment, loading up trucks with thier little loader (in the "NO DIGGING" Zone" ) :( They sure are two little stinkers, but very Loved little stinkers!!!!

Sydney came home from school yesterday with an announcement!!! She said to me "Are you in a good mood, to hear my test results" I thought she was going to tell me she bombed out on a test, well she went on to say "I got an *A+* in Language Arts on this test" Yea!!!! She was very Proud of herself!!! I am So Happy that this year is starting out so Good for Sydney!!!! I think it is so Great too, that we are able to be home as a family for these first eight weeks of school!!! Last year we spent almost five months straight in Rochester, only a few short breaks at home. Life is certainly easier on these kids this fall!!!

Tonight we will be settled in to watch the TWINS!!!!! It is happening for a third time, our lives are revolving around these stupid games:) Well maybe just a little, it is fun and stirs up memories of that *87* & *91* EXCITEMENT!!! GO Twins!!!

We hope you all have a Great Evening!!!

Prayer Requests ~

For all of the children everywhere fighting Cancer.

For John Frank & his family: www.caringbridge.org/mn/johnfrank

For the Dr.s working day and night, that a cure for NB may be found.

God Bless+

"By these things people live,
and in all these is the life of my spirit.
Oh, restore me to health and make me live!"
-Isaiah 38:16

All our Love to you all!!!

Kelly


Monday, September 22, 2003 2:08 PM CDT

Good Afternoon everyone!!!

Please stop by and sign the guestbook, we would Love to hear from more of you!!!!!

We had a Good weekend, it sure seemed like it was here and gone in a flash. Tom has been busy with Fall Harvest, combining beans the past few days. Carl and Sam helped:) Tom haul beans into town yesterday, they always Love to get out there with the guys, even if it's just riding along in the big trucks:)

Sydney and Sam were both sick with the stomach flu for a day:( They both are better, and I am just keeping my fingers crossed that Carl escapes this crud!!! He is taking bactrim (antibiotic) three days a week, so maybe this will help the fight!!! Carl has been feeling very well, and looking Great!!! He still complains of his legs hurting some, but I really do believe it is due to the Accutane. When I asked Carl the other day which leg hurts he said "All of them" :) He just completed this third round of Accutane, and he will get two weeks off, then will do a fourth round. His fifth round will wait till after his next round of Antibodies.

Today Carl is Happily watching his favorite Nick Jr. shows:) it is cool outside, so he will spend the day indoors at least until his partner in crime gets home from school:) A little earlier, Carl dug out the JC Penny's Christmas Catalog. The kids always enjoy paging through the toy section, and showing me just what they want for Christmas!!! It is quite humerous to listen to Carl's requests, he wants one of about everything he see's but would like it in "Orange" Yes he is still on the Orange kick!!! Last week Sydney came home from school proudly showing off her *recorder* that the fifth graders are now learning to play in music class:) Well to bring an instrument into the house like that, and show it to two little "Inspiring Musicians" (Carl & Sam) is like showing candy to a baby, then taking it away:) Carl is insisting that we go right out and Buy him ONE "In Orange" :):):) I can hardly wait til Syd comes home with her *Trombone* YIKES!!!!! Could be interesting around here:)

Speaking of Trombone, I guess at Band Try-outs, Sydney dazzled the band instructors with her Trombone "blowing skills" :) They were very impressed with her try-out and think she will be Great at Playing!!! We will go to Band sign up night on Thursday to discuss the Instrument lease/lease to buy, details. She is very Excited about playing, and I am very Proud of her!!!

Thank you everyone for checking in on Carl!!!! He is doing Fantastic, and we feel So Blessed Every day!!! Thank You for keeping us in your Prayers!!!

Please continue to Pray for~

John Frank and his family ~ www.caringbridge.org/mn/johnfrank

all of the children everywhere fighting Cancer

God Bless

But make everyone rejoice
who puts trust in you. Keep
them shouting for joy because
you are defending them. Fill
all who love you with your
happiness
Psalm 5:11

Love & Happiness

Kelly


Sunday, September 21, 2003 11:36 AM CDT

Hello everybody, this is Bryan it's a cold blustery day here in MN. Thank you everybody for the Birthday card's and greetings. By the way Auntie Sheila I have already been kissed but I've never been missed. Thank You Auntie Jean and Uncle Dave for the Card That's what I looked like when I was a baby.

I also ended up winning my game against Robinsdale and there was also a big brawl at the end. I also really appreciated the cake my coach Tim cooked for me it was really special. It is really cool when you get to see your team mate brawl and also recieve presents, cake, cards and balloons all on the same day.

We have been watching the Twins and it's really exciting because they only have to win five games and then they clinch the divison. Today the boys went with Tom to dump corn at the elevator. They are very energetic and playing together so that is good.

Thanks everybody and we hope u have a great day love, Bryan,Sydney,Sam, Carl, Tom and Kelly.


Friday, September 19, 2003 8:52 AM CDT

HAPPY BIRTHDAY TO ~ Melissa Welter today September 20th!!! We hope you have a Great Day:) It sure is a Beautiful Fall Day, Enjoy!!!!! We Love You and Miss you, How You Doin???? We miss hearing from you girl!!!!! Love You:)

Kelly & Tom
Bryan, Sydney
Sam & Car
<<<<<<<<<<<<<<<<<<<<<<<<<<>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>




Happy Friday To Everyone!!!

NEW PICTURES ADDED!!!

Sydney and I made it to Bryan's Soccer game last night!!! They WON 5-3 against Robbinsdale!!!!! GO BRYAN!!!!! We showed up with a Bouquet of colorful balloons:) Hopefully Bryan wasn't too embarassed heehehhhee....It was alot of fun, we are very Glad we were able to be there!!!!

The Twins Won 5-3 Too!!!!!! GO TWINS!!!!!

Congratulations to Rick and Mary Peterson!!!!! They are Proud Grandparents to Carter Paul, born yesterday September 18th!!!! Carter and Bryan share a Birthday, and they both share the middle name "Paul" How About That!!! :)

I found a very special card for Bryan's 16th Birthday, (and then forgot to bring it along) this is the verse inside:

When you were born, I didn't know
How soon you'd grow
into the son you are today.
I looked away
for just a moment, so it seemed-
as if I dreamed
your little-boy years, and then awoke-
time played a joke on me.
The next thing that I knew,
you became you,
and I became the parent of
a son I love
far more than words can ever say.

How very true, you wake up one day, and wonder where the time has gone, as if a dream, the years have passed so quickly. A very funny thought...This morning as I was getting Carl up, and dressed, I chuckled as I realized that 16 years ago, I was changing diapers, and today....I still am:) As a matter of fact!!!!!! Carl just announced "Mom I pooped" :) (Break from journal to change diaper).....

Remember last year when Carl said to me, "Mom I capped my pants" :) Sydney and I were reminiscing last night in the car about all of the cute things that we remember Carl saying:) That has to be one of our favorites, at least it's the one that gets brought up every time we talk about the "Cute things Carl used to say" LOL I guess it is high time we get working on Potty training Carl!!!!! We want him to get rid of the diapers/pullups before he gets to "Third Grade" :):):) LOL

The boys are together today, all ready for a day of full activity:) Since the weather has been "Rainy" for a few days, they have had to resort to staying inside, to drum up their contriving plans, ("Tents" and "deer hunting" again) YIKES!!!! But today looks like a Beautiful day is in store!!! The sun is shining, and it is a bit cool, so they will probably need jackets on, but they will be able to play outside!!! They are Happy!!! I thought today would be a perfect day to make a pot of Chili:) and Chocolate Chip Cookies!!!! The thing I Love best about this Cool Weather, it brings out the "Hearth in the Home"

I have a few very Important Prayer Requests~

Our little buddy Zane K. from North Dakota, is in Rochester this week. A few spots were found on an MRI and he will be having surgery to determine if this is scar tissue, or cancer cells. Please Pray very hard for Zane that this turns out to be just scar tissue. www.caringbridge.org/nd/zanek

For Brittany Ross is in Rochester this week also having scans/tests www.caringbridge.org/brittanyross

For John Frank, Keep the Prayers coming for John and his family. John is recovering and is doing well!!! www.caringbridge.org/johnfrank

For all of those that were hit by Hurricane Isabel, that they are able to recover from damages, and get their lives back to normal.

For all of the children fighting Cancer, everywhere.

Thank you all for checking in with us, and for all of your continued support!!! We would not have the strength, if not for all of your Love and Prayers that have lifted us up over this past year!!!! Thank You and God Bless, we Love you all!!!!!!

When darkness seems to veil His face,
I rest on His unchanging grace;
In every high and stormy gale,
My anchor holds within the veil.
His oath, His Covenant, and Blood,
Support me in the whelming flood;
When all around my soul gives way,
He then is all my hope and stay.
Edward Mote

Love & Happiness

Kelly, Tom
Bryan, Sydney
Sam & Carl:)


Thursday, September 18, 2003 6:51 AM CDT

Good Morning to all!!!

HAPPY BIRTHDAY TO ~ Bryan today September 18th!!!!! Bryan is 16 today WOW, hard to believe:) Just 16 years ago, Bryan came into this world, two months early, weighing a little over 4 pounds:) And Look at him NOW!!!! Bryan is a Great kid, he is the most caring, considerate, and compassionate person, and we Love him Just the way he is!!!!!!!!!!!!!!!! Wishes for a Great 16th Birthday Bryan, WE LOVE YOU!!!!!

Along with September, comes Bryan's Birthday, and September Twins Baseball!!!!!! GO TWINS!!!! The year Bryan was born, 1987 was THE BEST year for the TWINS as they won the WORLD SERIES!!! It was a very exciting time for Minnesotan's and for our family, as we had this new baby to celebrate, and then Cheering on the Twins as they went all the way to the Top!!! We have been watching the Twins the past couple of weeks, and the Excitement is back!!!!!

Today I will bring Carl to the Hospital to have his blood "HAMA" drawn to be sent to New York. If Carl has developed a "HAMA" (has developed an immunity to the antibodies) then his next treatment would start after the "HAMA" has disappeared. He is scheduled to return for round 5 of antibodies on November 3rd. We really doubt that he has developed a HAMA, as the pain was very consistent this last round up until and including the last day of treatment. November is when Carl is due again to rescan/retest, so this next trip will probably involve almost three weeks. Some time in Novemeber, Carl will also return to Mayo to have some of his follow up done there. We are going to address having his G-tube removed, and we are thinking about doing this in Rochester when we are there for his other workup. One of the reasons why he has kept his G-tube for this long, besides nutrition, is to get him to take his oral medications. He hates the Bactrim, but we have on occasion, talked him into taking it by mouth along with the Acyclovir. We have told ourselves that most kids don't have this convenience, so we have to adjust to not using it. We were told that children out of transplant usually continue to take these medications for about six months post transplant, so that would bring us to... "NOW" We will have to see what the Dr.s have planned!!!

Bryan is playing Adapted Soccer again this year!!! Tonight is game *2* of the season, (They won thier first game against South Suburban 4-1!!!) We are going to try surprise Bryan and be there for his game tonight!!! (I think he knows we may come) hehehhee Go Bryan!!!!!

Thank you all for checking in with us!!!! Thank You Sarah for Adopting Carl for your Latch Key classes:) Hello to all of the kids in Duluth!!!!! Hope your day is Great!!!!

Prayer Requests ~

Zane K. and Brittany R. are in Rochester having tests/scans Please Pray for Perfect Results!

John Frank...www.caringbridge.org/mn/johnfrank Please keep John and his family in your Prayers, he is making Great progress!!!

for all of the Sick, and the children fighting Cancer everywhere.

For all of those in the Path of Hurricane Isabel!!

God Bless+

"Jesus took him by the hand and lifted him up,
and he was able to stand."
-Mark 9:27

Love & Peace

Kelly, Tom
Bryan, Sydney
Sam & Carl:)


Tuesday, September 16, 2003 10:56 AM CDT

Hello to all our Dear Friends and Family!!!

Carl will not have his counterpart today, to help conjure up enterprising schemes :( (Sam has school) but Carl will be ready for action the moment Sam walks in the door!!!

We visited the garden this morning, to check out the Pumpkin status:) The picture above is one of a few, from a larger variety, but there are several even BIGGER (Atlantic Giants), that have not turned orange yet. I ordered these seeds last year, but we never planted all of them, so it was kind of an experiment to see if they would grow:) Thanks to Uncle Chuck, a Garden was planted this year!! It will be fun to see how they all turn out in a few weeks:)

Last night Auntie Janet stayed with the kids while Tom and I met our Friends Bob & Karrie Bauer in Glencoe to deliver some beef to them, that we picked up from the meat locker. We ate supper, and enjoyed great conversation!!! It was so good to get out for a few hours, and visit with friends we have not seen for awhile!! I wish we lived closer to many of them, as we used to get together once in awhile. we always enjoy our time together!!! We miss the laughter, and reminiscing about all of our old times:)

I want to Thank all of you for continually checking in on Carl!!! We are So Delighted that you enjoy reading about Carl, and following his progress!!! We Appreciate your support through all of the Good and not so Good days, we are So Happy that we are having more of the GOOD days to report and our Family is experiencing Joy, and Peace as we spend these few weeks at home together!!! Life Is Grand!!!

We are always surprised by the number of people that check up on Carl, and follow his story:) This morning I received a very SPECIAL email from Deb D. her husband is William Dufris, the voice of "BOB THE BUILDER" and many of the other charictures on the show!!! What a Thrill to read that Carl is receiving Prayers from People, that we never would have dreamed of!!!!! We are very Blessed!!!!! Thank you to Everyone that Continues to keep Carl in your Prayers!!! "PRAYER IS POWERFUL"

Prayer Requests ~

Brittany Ross, Brittany is having scans/test in Rochester this week

John Frank and his family www.caringbridge.org/mn/johnfrank

For all of the children fighting Cancer everywhere.

For all of the People, Dear Friends and Loved ones that are in the path of Hurricane Isabel, that the storm loses strength, and that all are safe from harm and destruction!!!

You are mightier than all the breakers pounding on the seashores of the world.
Psalm 93:4

Many Blessings to you on this Beautiful Day!!!

Love & Peace

Kelly


Monday, September 15, 2003 8:26 AM CDT

Good Morning everyone on this Monday!!!!

We hope you all enjoyed a very nice weekend!!!

Carl received an invitation to Camp Snoopy at the Mall of America, several weeks ago. He was invited, along with all of his family to attend the annual "Make A Wish" Reunion celebration:) We weren't planning on going, we didn't think Carl was elibible to go, as he has not been granted a Wish, "Yet" He is however on their mailing list, because we did apply for a "Wish" for Carl a while back.

Our friend Brittany Ross, from Pine Rive Mn. that we met last year at the Rochester "Donald House" asked us last week if we were going to Camp Snoopy? Well I did some further checking, and Carl was eligible to attend, so we were then signed up for the Event!!! As for Carl's "Make A Wish" we decided to wait until next year, to meet with the "Wish Granting" people, and finalize Carl's wish:) We are not sure what that will turn out to be, but whatever it is, will be granted to a very speical, well deserving little guy!!!

We are So greatful to Camp Snoopy, and the Mall of America for having such a Great Day for all of these kids!!! We all enjoyed ourselves very much!!! As we were waiting to meet Bryan, we found Brittany, her sisters, and her Mom Tracey:) Brittany looks so good, it was Great to see her out in the normal world!!! Brittany was heading for Rochester after the Camp Snoopy day for a week of Scans/tests, it was good that she was able to have a little fun before her week at Mayo!!! We were treated to a Brunch in a ballroom, on the lower level of the park, and "Snoopy" himself was there to greet kids, and give huggs while posing for pictures:) What a Cutey Patuety he was:)

We then made the rounds and the kids rode on lots of rides:) Sam's favorite was the log ride:) Carl went on this one once, but bailed off for the second trip:) (We were allowed to ride twice before getting off, because Bryan had his wheelchair) Bryan made sure to take Mom on a scarry ride called "The mighty AX" and we did ride that one twice too:) We left the park area for awhile, and walked around the mall. As we passed the "Bath and Body" store, I remembered I wanted to look for a lotion that they sell. Alot of Moms use this on their children while they are taking Accutane, it is called *Shea Butter* It is supposed to work really well on their dry, peeling skin brought on by the "Acne Medication" that they are taking for treatment. I first heard about this from our cousin Ann in NY:) She had noticed *Shea Butter* on another childs website, and told me about it!!!!! Thanks Ann, I found it!!!!! It really smells good too, kind of like a coco butter scent:)

We decided to go check out the "Underwater Adventure" since we have not been there before, so we worked our way over to that area, and proceeded to go through the admission area. The gentleman at the counter noticed that we were wearing "Make A Wish" name tags, and wrist bands. He told us that we were allowed to go through this exibit FREE too, since we were there with MAW. The man called Sam, & Carl by name:) The boys were puzzled and wondered "How did he know our names" :) WOW, we didn't expect this, we were so thrilled with the opportunity to take in this SUPER awesome "Adventure" We really enjoyed this as our BEST part of the day:) The Sharks and Sea Turtles were so COOL!!! The kids were so fascinated with all of the fish, and underwater creatures!!! Before we left this area, we were able to touch some real "Rays" and fish in a little tank, the perfect height for little wonderous minds:)

A big surprise to us, we ran across Jessica Nielson, and her mom Laurie at Camp Snoopy:) Jessica is also a Patient at MSKCC, we met the Nielson's this spring in NY, and found out they too were a Minnesota family!!! It is kind of funny to recognize people back home, that we are used to seeing in NY:) It was a very fun Event, and we are So glad we got to do this with the kids!!! I think they will remember this day for very long time:)

Well believe it or not, the boys just came in the house from picking little pumpkins out in the garden:) They are full of dirt and need to get in the tub NOW (their first bath of the day, but surly not their last) LOL

Prayer Requests ~ Brittany Ross, this week as she returns to Rochester for Scans and Tests, Pray for Perfect Results!!!!

For John Frank, and his family www.caringbridge.org/mn/johnfrank

For all of the children fighting Cancer Everywhere!

GO TWINS!!!!! GO VIKES!!!!!

Have A Super Monday!!!!

Love & Smiles:)

Kelly


Friday, September 12, 2003 9:12 AM CDT

Good Morning and Happy Friday to all of Our WONDERFUL Family and Friends!!!!

Ricky Garrett Football Pics:
Hey Robinsons check out some COOL Football Pics of Ricky!!!!! Billy asked to pass this on, as he doesn't have all of your emails. Go to website: www.searcysports.com then scroll down the right side till you come to Hootens Classic. Click on Ozark VS. Clarksville ~ Look for Ricky he is no. 12 in a Gold Jersey, and Purple pants. Billy said that a couple of years ago, Ricky broke his leg, they said he wouldn't be a good player anymore, well they were wrong, as you can see!!!!! Great Pics Billy, Thanks for sharing with us!!!!! GO RICKY!!!!!

Last night we woke up about 2:30am by the screams of Carl. The first thing I thought was that his Mickey Button got pulled out, by him twisting up in his tubing. (one of my nightly fears) I quickly checked his g-tube, and everything seemed intact. His screams were of terrible leg pain, he was not just crying, but screaming that his legs hurt:( We got him up, and gave him some childrens motrin, and tucked him in bed with us for the rest of the night. He calmed down very quickly, and went back to sleep.

Carl did begin taking his Accutane (third round) this last Monday. I have read, and heard that Accutane can bring about many side effects, including leg pains. He has never experienced leg pains before to this degree. It is always a great shock at first, when your child begins one of these symptoms/side effects that we hear about from others going through the same treatment. Of course there is always the old fashionded "Growing pains" but how very hard to just discount it as a normal childhood ailment. I am sure it is just from the Accutane, but you can never totally put these events out your mind completely,(fears of a relapse) not when dealing with this disease.

This week was "Picture week" for Sydney and Sam:) Syd's was on Wednesday, and Sam's was today!!! They both are growing up so fast, I can't believe Sam is a "Schoolager" and Sydney will soon be wearing braces ( ) :):) She had an appt. on Wednesday to visit with Dr. Inglis about getting her new metal appliances installed. It will be around the end of October when completed. She is not too worried, these goofy kids these days are excited about getting braces for some unknown reason. Maybe it's to be like everyone else, or because they can choose the color of their rubberbands each month? One of the joys of growing up:)

To Freddy & Patti ~ Carl got a BIG Package brought to his door the other day:) He was looking out the window and said "MOM THE MAIL GUY IS HERE --LOOK!!!!!" He is getting a little too used to this MAIL GUY showing up:) Thank you for the gifts, and for sending them home here!!! The boys went right to playing with everything:) We know how much you Love Carl, and we all Love you just as much!!!!!

Prayer Requests ~

John Frank ~ www.caringbridge.org/mn/johnfrank Keep the Prayers coming, things are better!!!

For all of the children fighting Cancer everywhere.

Thanks for always keeping us in your thoughts, Prayers and for checking in with us, Thanks for your notes on the website, and for all of your private emails, we love to hear from you!!!

We Love You All!!!!

Kelly & Tom
& Family


Thursday, September 11, 2003 6:04 AM CDT

Good Morning on this Thursday

HAPPY BIRTHDAY TO ~ Kaden today Sept 11th, Kaden is Celebrating his 7th Birthday today!!!!! We want to wish you a very Special day filled with many Surprises!!! Lots of Love to you from Carl and all of his family:) I just know that your Grandma Jerri has something very Speical planned for you today!!!! Have a Fun Day Sweetie!!!!!
<<<<<<<<<<<<<<<<<<<<<<<<<<<<<>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Good Afternoon to all!!!

I just got back home with the boys from daycare:) It is always a joy to hear the cute stories Jeanie has saved up to tell me. Today Carl and Sam were peeking into the kitchen as Jeanie was preparing dinner, Carl asked "What we havin fo dinar?" well Jeanie told the boys, and off they went. Then a short while later they reappeared, to ask "Is the food ready yet?" :):):) She was So tickled by these two charictures today:)

It was kind of funny, Tom forgot to bring diapers for Carl today, he told Jeanie that he grabbed his lunch, but forgot to pick up his diaper bag that was sitting right next to it:) Jeanie said "Thats ok, I still have some pull ups that Kelly left here from last year" she went on to say, "Kelly told me to just keep them, Carl will be back"... Well I can very well remember that conversation with Jeanie, and I really meant it!!! And "Carl Is Back!!!"

Right now we are watching the Twins vs. Chicago game:) (GO TWINS) and a guy just finished singing "God Bless America" Each time I heard a patriotic song today, It gave me the chills. I think Tom and I have a different appreciation for the Sept. 11 attacks, since we have had the opportunity to spend time in NYC, and to actually visit the Ground Zero site. It still seems so unbelievable, like it couldn't have happened. The thing that I will always think about, when reflecting on this Historic, Tragic event, will be the people that were there, that experienced this, that lost a loved one. There is a general class of people we have discovered in NY, and that is the kindest, friendliest, warmest people we have ever met anywhere. I can honestly say we have run into very few people we would consider "rude" We are always greeted everywhere with a smile and Hello:) People are very down to earth, and generous!!! I think the Humility learned from the 9-11 attack, is ever more present in the hearts of many people, especially in NY, but I think is has affected people everywhere...

Eric Fisher is in NY right now:) I wonder if he visited Ground Zero today??? He was going to go to a couple of Yankee's Games (Eric's favorite team!!!)

Sorry Eric:) We are rootin for the Twins today!!!!! :)

Prayer Requests ~

For all of the children with Cancer, that they are healed by God's loving touch

For John Frank as he is steadily recovering: www.caringbridge.org/mn/johnfrank

For all of those that tragically lost their lives Sept. 11 2001, and for their families left behind.

Love & Peace

Kelly & Family

<<<<<<<<<<<<<<<<<<<<<<>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Today I am working again, so we will soon be shagging three little monkeys out of bed to get them dressed for their day!!!!! Both Sam and Carl will be going to Jeanies daycare today:) Sam has Kindergarten every other day, so today Carl is very Excited that he will join him with all of their little friends at Jeanies:)

I hope you all have a Wonderful Day!!!! I better get going here, but will update this afternoon, Check back later:)

Love & Peace to all

Kelly & Tom
Bryan,Sydney
Sam & Carl


Tuesday, September 9, 2003 8:47 AM CDT

Good Morning this Tuesday:)

I would like to share with you, a journal entry from Becky Smith, on her daughter Sarah's website. Many Neuroblastoma parents belong to a list serv, support group on the internet, and communicate daily about our children. We share stories about our Happiness, and share tears when one of our children earn their angel wings and are called home. Becky wrote this journal, after we all experienced two more little girls passing last week. This morning I logged on to check emails, and just learned of another girl, an older patient that was treating at MSKCC too, that also has just became an Angel.... Please read this, Becky has a very Special gift of writing.

UNSHACKLED ANGELS

Two girls whose stories I have been following died of Neuroblastoma this weekend. It was sobering to read about their deaths on their Caring Bridge Sites and to be slapped in the face again with the reality that they died from the cancer my daughter has. Medically speaking, her chances of survival are no better than theirs were; in fact, her chances are no better than any of the children I have heard about this year ---child after child after child who has died from this horrific disease.

I read another website earlier today and the dad was saying that when he hears all the grim statistics, his intellect takes it all in but somehow his emotions don't quite grasp it all. And to tell you the truth, I think that is the Lord's mercy because in the backs of our minds, all we Neuroblastoma parents know the odds of survival are highly unfavorable for our beloved children. And yet it's not something we can dwell on or ponder at length because our emotions are telling us that it's time to rejoice simply because our children are still with us, breating, eating, laughing, LIVING! This is all we need for right now.

I'm having a hard time picturing Sarah in the scenarios Ive read about lately where rapidly spreading disease takes over the body in a matter of days and brings about immense suffering and pain. Hospice, morphine, seizures, grief, a child's cry of agony-- there's at least one family somewhere out there today walking the final steps of this cancer journey and experiencing those very things; they're experiencing the beginning of the end of the life of their child.

But my emotions can't go there right now; instead I'm going to concentrate on this afternoon when I watched my "seriously ill" daughter wolf down a huge lunch and ask for seconds. I saw her tease her brother, chase her dog, and run up and down the stairs to her room. Earlier today, I saw her don a frothy, frilly dress for church, bursh her hair and put in a pink hair band with a bow. I watched her walk down the hallway to Sunday school, nonchalantly swinging her shiny purse and Bible and waving to little friends along the way. I watched her saunter along and my heart drank in the sight; I watched her little curly head disappear into a Sunday school classroom and I lingered just for a minute to inhale the perfume of the joy that she always leaves behind.

I turned away from that hallway and my mind went to the other little girl who died today and I pictured her mom dressing her for Church just a few short weeks ago, not realizing how few Sundays were left for her to do that. And I wondered how many Sundays do we have? How many days of school? How many birthday parties? How many homemade cakes with love stirred in? How many bedtime stories and morning kisses? How many?

I know very well how quickly this disease moves and that in as little as a couple of months she could be gone. But I also know that her disease could remain stable and she could survive for "quite a couple" of years! It's a strange place to be--embracing the hope and joy of the moment and dreading the fear and pain of the future, all the while trying to keep my sanity and to hold on to the peace that God promises.

But for today I will put other thoughts aside and honor the memory of two sweet angel girls who I've never met, angels who died from a disease I wish I'd never heard of. Today is a day to pray and hope and wonder; it's a day to hold my silly, frilly princess close to me and to be comforted by the steady rhythm of her sweet little heart.

This monster called Neuroblastoma may very well think that it's winning the battle. However, Neuroblastoma doesn't have the power to shackle the angels who are swiftly winging their way toward the smile of heaven, angels who are sailing away to a place where every little one is at peace, far from needles, chemo, morphine and tears cried in the shadows of a lonely hospital room.

I'd rather Sarah not fly to that place anytime soon, but I'm so glad that whenever her time comes, she'll be ready. She told me recently that even if she dies as an old lady, her wish when she gets to heaven is to be eight years old again. It truly is a wonderful age and whether she lives it out here on earth or up in heaven, she will be extravagantly loved and she will be in gentle hands.

And to all the children who have already made the journey--be watching at the gates to welcome into your world of joy the little ones who are yet to come. And if Sarah should ever be among them, tell her that her mommy is still breathing in the perfume of the joy she left behind.
************************************************************


To read more of Becky's wonderful journals and to read about Beautiful Sarah, you may visit her website at:
www.caringbridge.org/nc/sarahsmith

I do know that feeling of "My heart drank in the sight" I find myself feeling this many, many times a day as I look at Carl, and watch him playing so Happily:)

Thanks for checking in today, and for always keeping our family in your Powerful Prayers!!!!!!

Prayer Requests ~

Please continue to Pray for John Frank, and his family, they need lots of support as John is still healing.
www.caringbridge.org/mn/johnfrank

Pray for all of the children who have this Horrible disease NB, and for all of the "Angels" and their parents that miss them so much.

Love and Peace

Kelly & Tom
Bryan & Sydney
Sam & Carl


Monday, September 8, 2003 7:16 PM CDT

Good Evening Everyone!!!!!

Thanks for stopping by:)

I added a couple of new pictures, check them out:)
the second one is of Carl today at Jeanies daycare:)


Today felt like a very normal day, Sydney and Sam were in school, I worked, and Carl returned to his daycare:) What a very Good feeling to have.......Life Is Good!!!


This is the first time Carl has been back to Jeanies since last August, when he was sick, then diagnosed with cancer. As you can see, Carl's little sweetie enjoyed having him back again. Last year when Carl was in the Hospital, getting ready to begin chemo, Carl and I were talking about daycare, he would ask me many times if he was going to Jeanies in the morning:) We were talking about Josie one day, and all of the kids that missed Carl at daycare, Carl thought about it for a few seconds, then he said "Josie Loves me:)!!!" I remember how preciouse that conversation was:) Jeanie and the children, have prayed for Carl every single day at dinner, since he has been away. And the children would never let Jeanie forget that they needed to Pray for Carl!!!

God Bless all of the little children everywhere that have kept Carl in their Hearts and Prayers...

Wishes to you all for a nice Evening!!!


The LORD said: "My eyes will be open and my ears
attentive to the prayers offered in this place."
2 Chronicles 7:15

Love & Prayers

Kelly


Sunday, September 7, 2003 11:50 AM CDT

Hello on this Beautiful Sunday!!!!!


New Pictures Added!!!


What a Great weekend we are having:) Yesterday was the Annual Firemans Family Pic-nic:) It was So good to see and visit with everyone!!! It sure has been a long time since we have got out and done anything together!!! The kids always enjoy seeing all of the other kids and running around the park:) It was a very Good Time for all!!!

Today Tom is out Baling Hay with Uncle Johnny, Sam went along to help:) Carl and Sydney have been holding some new little kittens that ventured out of the barn today:) Bryan is enjoying a nap right now:) We plan on meeting in Morton later, at Grandma & Grandpa Robinson's for supper:) Uncle John & Auntie Sheila are bringing a fresh turkey, and plan on cooking it in their Deep Fryer!!!! Yummmmm:)

Another Beautiful fall day here in Minnesota!!! We hope you are all Having a Wonderful Weekend too!!!!!

Love & Huggs to Everyone

Kelly & Tom
Bryan, Sydney
Sam & Carl:)


Friday, September 5, 2003 11:58 PM CDT

Good Evening, Or Good Morning:)

It is 12:03AM, Carl is Home and still up playing with Sam:0)

Carl is showing Sam all of his treasures that he brought

back with him from NY!!!



Will Update more tomorrow!!!

Love & Peace

Kelly


Friday, September 5, 2003 6:22 AM CDT

Good Morning Everyone!!!! Happy Friday!!!!!

Getting the kids ready for school and to fly out the door for work today. I ended up getting called yesterday, to work today, so we will all be on our way soon. Sam asked to stay at Grandma Phyllis's today, we tease him that he likes to go to Grandmas for her cookies:)

The guys will fly in tonight, and I think they are very ready to come home!!! I talked to Carl yesterday after treatment, and he was just a giggly little boy, Tom said he was in such a good mood then:) Tom will be very surprised to look around when he gets home. The corn and beans have all turned since two weeks ago when they left. The weather is also a big change, from Hot to almost cool. We woke up this morning, and it is FREEZING in here...brrr


Have a Great day everyone!!!!! Thanks for continually checking in on us, and for keeping our family in your Prayers!!! God Bless you all

Be sure to check back this weekend for new "little hairy head pictures:)"

Prayer Requests ~

John Frank ~ Please keep the Prayers coming for John and his family www.caringbridge.org/mn/johnfrank

Chris Johnson ~ was discharged from the Hosp. yesterday, but still could use Prayer, as her condition has not been resolved.

Eric Fischer ~ Is having testing/scans in Rochester this week, Pray for Perfect results.

For all of the children everywhere fighting Cancer, and their families.

He keeps his eye upon you as you come and go,
and always guards you.
Psalm 121:8

Love

Kelly & Family


Wednesday, September 3, 2003 7:04 PM CDT

New Photos added this morning ~ Sam's first day of Kindergarten:)

Hello this Wednesday Evening!!!

HAPPY BIRTHDAY (belated) To ~ Jenny Robinson!!!!! Jenny Celebrated her 23rd Birthday yesterday on the 2nd!!! I am So sorry to have missed your day too Jenny, boy I have been terrible this past week, forgive me:) I hope you had a Beautiful Day!!!!! Beautiful it was, such picture perfect fall weather, my favorite time of the year, A Perfect time for a Special Birthday!!! We Love You Sweetie!!!!!

Today Tom reported that Carl is still HAMA Negative!!! Praise the Lord for listening to our Prayers!!! Carl will be able to complete this full week of his 4th Round of Antibodies!!!!! The boys will come home on Friday night:) They will be traveling by Corporate Angel Network back home this time!!! I will pick them up right at the Hangar about 7:30pm, Bryan will be coming home for the weekend too, so he will be with me to greet our guys!!! I Can't wait to see that little guy with his new hairy head!!!

Carl will not need to return for round 5 of Antibodies until November 3rd!!!!! WOW I can't believe I am typing this, I do believe this will be the longest amount of time we have been able to spend at home together since this all began a year ago!!! UNBELIEVABLE!!!!! This will be a very Exciting 8 weeks for us, Jeanie mentioned combining, Yes the boys will be hounding Dad & Uncle Chuck for rides in the combine very shortly:) This year Carl will be home for Halloween too!!! Last year we stayed in Rochester, and we had a little party at the "Donald House" there, but we sure missed being home with Sydney and Sam, and TRICK-OR-TREATING in Morton:) It just does not seem right, to miss visiting Grandma & Grandpa Robinson's house that night:)

A kind of Ironic thing, last year about this time, Carl came home from Rochester for the first time after his first round of chemo. We attended Our Annual "Firemans Picnic" in Beaver park that Saturday. This coming weekend on Saturday, we will be attending the Picnic a year later, with Carl just coming home:) Last year Carl was sporting a little black Doo-Rag that I had just got him to protect his newly little balded head:) This year Carl will be sporting a "new" hairy little head:) Remember I had mentioned about Carl coming full circle over this past year??? He surly has, and we are Evermore Thankful for how well Carl is doing today, and just how far he has come!!!

Testimony to the POWER OF PRAYER!!!! God Bless all of you for all of your Powerful Prayer Support over this past year!!!!!

Tomorrow is Sam's first day of Kindergarten!!! He is all ready to go!!! I will be getting my camera, and kleenex all ready for the morning:) Sydney loved her second day of school today:) Tomorrow she will be doing a presentation about herself, in Language Arts!!! She will be bringing a "ME" bag with some things inside to tell about herself. She is all prepared, and I know she will do a Great job, 4H has done wonders for developing speaking skills in these kids!!! :)

Have a Wonderful Evening Everyone!!!!!

Thank You for making me so
wonderfully complex! It is amazing
to think about. Your workmanship is
marvelous- and how well I know it.
Psalm 139:14

Love & Smiles

Kelly & Family


Tuesday, September 2, 2003 8:09 PM CDT

Hello and Happy first day of school to many Children, Teachers and Mom's (Dad's too) :) Hopefully it wasn't too crazy of a day for all of you!!!

Thank you So much Freddy & Patti for having our guys again this long weekend!!! It sounds like Carl managed to get a little more spoiled there again:) He Loves to see you two, and he really enjoyed all of the fun he had!!! I am So glad Tom was there when Carl had his little episode Saturday morning, otherwise he may not have realized this was going on. It sounds like you both were so calm, and were so helpful to Tom!!! It would be so Scarry to be alone in this situation. Every time Carl has had a seisure, we were in the company of Angels, and I know they definatley were this time!!! Thanks again, we Love you So Much, and feel Richly Blessed to have you in our lives!!!!!

Sydney came home from school today, chattering about her first day, and she has not quit!!! She is So excited about her new school, and new life!!! Her very favorite class is band:) She is exploring the idea of playing an instrument, and is thinking about either a trombone, or a saxaphone...COOL:)


Bryan called after he got home, and was just as excited about his first day of school. I think he is mostly looking forward to next week, when his Soccer team will begin to work very hard to defend their State Championship Title!!!! I can't wait to get to some games this year!!!

Tom on the other hand, did not have the most enjoyable day! Shall I say, "If you ever want to get chewed out by your childs oncologist, just show up in clinic, after your child has spiked a fever, and had a seisure, without rushing them into the ER over the weekend:(" I think Dr. K. just wanted to express the very seriousness and importance of getting Carl to the ER in any case of a spiked fever. He under no uncertain terms, made it clear to Tom, that if Carl gets a line infection, no matter where he is, in Minnesota, or NY. he can die!!!!! Well I guess this was a very good learning experience, and there will never be a question about an ER trip again. I think Tom felt bad, and I did too, I do not blame him, as we discussed the situation, and at the time feel we made the right decision to keep a close watch on Carl after the seisure, and fever broke. He never did get a fever the rest of the weekend, and was playing and acting totally normal!!! We are not sure the reason for the fever, I have heard that Antibodies can bring on an unexplained fever?? They checked Carl from head to toe today, and drew cultures to check for a line infection (infection in his port)

Dr. K. mentioned to Tom that he may contact Mayo to recommend Carl have a Neuro study done, to address this seisure thing that he has happening?? Tom told Dr. K. that he used to have these seisures when he was a little kid, they are hereditary, and are usually outgrown, as Tom did. So I don't really know what we will be doing with that, We both feel strongly that this condition is something passed down from Tom, and Carl will eventually outgrow it?? And like Jenny B. said, he will just develop other annoying habits:)

Carl had his first antibody treatment for the week today, and did not experience any pain. Cat drew labs to check for a HAMA, and Tom will find out the results tomorrow morning. If he has developed a HAMA, then they would come home right away, otherwise they will complete this week, and will be flying home on Friday. Carl did sleep pretty heavily after treatment today, so were hoping that is a sign that he is still HAMA Negative!!! Other than all of this stuff today, Carl is doing Great and seems to be feeling very good too!!!

Today, I brought my Mom to a Dr.s Appt. in Rochester. She had X-rays done of her shoulder, and met with a Orth.Surgeon to discuss her situation. It turns out that since her X-rays in June, her bone (which showed a fracture) has been healing, and is repairing itself!!! She will not need surgery at this time, but will return in a few months for a re-check!!! Praise the Lord!!!

Prayer Requests ~

Carl to complete this week of antibody treatment.

Chris Johnson who has been in the Hosp for a few days with a cyst on her hip, and having severe pain, as it is pressing on a nerve. Chris is having this drained tomorrow, Please keep her in your Prayers.

For John Frank who needs steady Prayers for healing www.caringbridge.org/mn/johnfrank

For all of the children fighting Cancer, and their families.

For all of the Wonderful Teachers, and School staff that take care of our Precious children every day at school!!!

God Bless you All

As for you, be strong and do not give up, for your work will be rewarded.
2 Chronicles 15:7

Love & Prayers

Kelly


Sunday, August 31, 2003 10:49 AM CDT

Hi Everyone!!! New Journal under construction:) Please check back in a Bit, Thanks!!!

Kelly



I am So SORRY I missed Jackie & Rickys
Birthdays:( Both were on August 26th

HAPPY BELATED BIRTHDAY TO ~ Jackie Retzlaff and Ricky Garrett!!!!! I HOPE you both had a Great Day, I always think we are So Blessed to have such a Super Family:) Our Nephews and Nieces are So Special to us, we Always Enjoy being around all of you:), we are surely guaranteed many smiles and Laughs!!!! We Love all of you guys more than you will ever know!!!! Thanks for choosing us to be your Auntie & Uncle:)




Good Morning to All!!!

Carl had a good night last night, Tom said he was still sleeping when I talked to him this morning:) They had a very full and Enjoyable day yesterday!!!

Pop celebrated his 85th Birthday!!! Carl was bothered that they didn't turn the lights out and didn't count:) You know when we sing after the Happy Birthday song..."This is Pop's Birthday - Birthday - Birthday, This is Pop's Birthday, lets count the years away ~ 10, 20, 30, 40, 50, 60, 70, 80, 1 - 2 - 3 - 4 - (((((5))))) :):):) I talked to Patti this morning too, and she told me all about Carl, he thought that they just did not do this right!!!! He kept telling Freddy for about ten minutes that "We didn't Count"!!!!!! SO Tom explained the deal to them, and then they counted:)

Today they are bringing Carl to a little Adventure Park!!! They have rides and I'm sure lots of other fun stuff for a little guy to Enjoy!!! It has been fun to talk to Carl on the phone:) Every time I start to talk to him, the first thing he asks me is "Is Sam Driving the Gator???" He is so worried that Sam is getting in all of these extra hours without him, and he is missing out:) The truth to the matter is, that Sam has not got on that Gator once, since Carl has been gone:) It is just not the same without his little buddy to ride next to him, and not the same without quarreling over who gets to drive:) While on the phone with Tom this morning, Freddy called out from the background to me "Is Sam driving the Gator" He thought he had better ask, since Carl was still in bed:) LOL

Have a Great Sunday Everybody, Enjoy this Comfortable weather we are having!!!

Prayer Requests ~ For Carl as he starts week two of antibodies on Tuesday, for an easy week.

For John Frank ~ recovering from an accident at HCMC, and slowly coming out of a Coma. www.caringbridge.org/mn/johnfrank

For all of the children fighting NB, for little Maddison who is losing her battle and soon will earn her Angel Wings.

For all of the Parents who have lost there children, and miss them So much.

"Truly I tell you, many prophets and righteous people longed to see what you see, but did not see it, and to hear what you hear, but did not hear it."
-Matthew 13:17

God Bless you all

Kelly & Family


Saturday, August 30, 2003 9:31 AM CDT

Addition to journal ~ I forgot to mention the State Fair, and the kids Share the Fun performance!!! They did a Great Job!!! They did not make the top two this year, but really Looked Good!!! They all were so adorable, and should be very proud of themselves!!! I am very Proud for them getting to the State Fair for the second year!!!!!

We enjoyed our day at the Fair, and also got to see Uncle Clair, Auntie Joy, & Dan!!!!! The kids Highlight of the day was the "Home Depot" :)building!!! They each constructed a little wooden project that they chose, and they got a cute little Orange carpenters apron to keep, as well as their project to take home:)

We did not find the Fried Oreos:( But ate plenty of other fattening foods:) such as Cheese curds, ice cream, corn dogs, french fries, beef jerky, and I was Happy to find the Minnesota Bound bld. and the North Woods area... There we sampled, Ron Shara's ~ Wilderness Walleye Cakes (voted the best new Fair Food) They were good!!!!!

I also forgot to mention that Carl is doing well!!! Tom said He is acting very normal, and running around as if nothing has happened. Tom gave him some tylenol, and Carl seems to be feeling well:)

Thanks for checking in, and for all of your Support!!!! God Bless

Kelly
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Good Morning this Saturdy!!!

HAPPY BIRTHDAY TO ~ Pop!!!!! May you have a very Special 85th Birthday today!!! As you Celebrate today with everyone there with you (Tom & Carl too:)) Just know that you are Loved very Much!!! Have a Beautiful Day!!!

I just talked to Tom and am very Shocked to hear his report of Carl this morning. Tom said he was awaken about 6:00am with Carl shaking and hitting him in the back. (They were sleeping together at Freddy & Patti's) Carl was having a seisure. Tom woke Freddy & Patti, and they started wiping Carl off, and cooling him down. Carl's seisure was febrile (from fever) He has had several of these seisures since he was about a year old, but they never get any easier to experience. The last time Carl seized was in March, during transplant. Auntie Jill was playing with Carl, and singing with him, and all of a sudden his eyes rolled back in his head, and he started to stiffen out and shake. We both were beside ourselves, but were grateful for the quick response of the Dr.s and Nurses that all flew into Carl's room within what seemed like seconds later. This was a difficult time for him to have this happen, since he was on his third day of getting his first high dose chemo, in preparation for the stem cell rescue. This seisure was also due to a fever (which we believe was from a line infection) The decision was then made to withdraw the remainder of this first drug, and to continue with the other two chemo drugs on the protocol. It bothered me that Carl did not get that third dose of this first chemo that was SO important, but later found peace with justification that Carl did not need all of this chemo, so this was God's way of handling the situation.

I feel So sad that this happened to Carl today, and of course feel terrible that I am not there to love him up. We don't know the reason for his fever, but Pray that it is nothing serious, and that it will resolve itself. Tom will be keeping a close watch on him and monitoring his temp. We talked about contacting the Dr.s but feel that there is nothing that they can do about this anyway. Tom will talk to them on Tuesday when they return to the clinic.

I want to wish you all a very Blessed Holiday Weekend!!!! Enjoy your last couple of days before the back to school rush starts!! Spend some precious time with your children, and Hugg them tightly!!!!

Prayer Requests ~ For Carl, that his fever is resolved, and not be any serious matter of concern. That he quit scaring his Mom & Dad (and everyone else) with these seisures anymore!!!

For all of our friends and their children with Cancer and other illness, that they are blessed with the miracle of healing.

For Pop today as he Celebrates his 85th Birthday!!! That he Enjoy Many, Many More!!!!!

For all of you, over this Holiday weekend!!!

For all of the childrens safety, when soon returning to school!!!

God Bless You All

"But as for me, my prayer is to you, O Lord.
At an acceptable time, O God,
in the abundance of your steadfast Love,
answer me."
Psalms 69:13

Love & Prayers

Kelly


Friday, August 29, 2003 6:27 AM CDT

Good Morning and Happy Friday to You:)

The last day of the first week of antibodies will soon be over for Carl and Tom:) Tom is probably trudging up First Ave. shoulder to shoulder with fellow parents pushing their child in a stroller, with Medical staff bustling in all directions trying to get to work. Dodging pigeons pecking crumbs on the sidewalk & dogs on a leash, that are stopping to sniff every pole or newspaper box along the way , wizzing by McDonalds hoping that Carl will not notice the familiar smell of Egg McMuffins leaking out the door as someone slips in and out all in about two seconds as he hustles by to make the intersection that just changed to walk... locking up his pace to miss the cab that just tried to sneak around the corner honking at someone else in front of him..... Soon he will pass through the side door... turn to go to the elevator... and ride up to 3rd floor... step out and park Carl's stroller. He will greet Vicky at the front desk and tell her Carl is fine, no caugh, fever, runny nose, etc. Then Carl will be weighed, get a finger stick from *Faye* offered a bandaid of his choice (Usually Sponge Bob, or Jimmy Neutron) :):):) Then Carl will head back to the bed area and wait for Gail, or Laticia, Marie, Cat or one of the other Sweet nurses to hook him up for Antibodies.....All in a Days Work

As soon as I get these other two bums out of bed we are heading to the "State Fair" We will pick Bryan up on our way to the Fair too. Uncle John, Auntie Sheila, Sarah & Katherine and Auntie Janet will all be there too!!! The girls all need to be to practice in the 4H building about 3:00Pm, then their performance will be at 7:00PM!!! It should be a very fun day!!! I am on a mission today to find those Fried Oreos!!! :):)

Have a Great Day Everyone!!!!!! We Love You All!!!

Prayer Requests ~

For Carl as he completes this last day of Antibodies, that he has a manageble day.

For all of the children at MSKCC, and everywhere fighting this battle for their lives.

For John Frank in a coma at HCMC, and for his Loving family by his side waiting for him to awaken.

For Safety, for all of the children heading back to school.

"Let the word of Christ dwell in you richly;
teach and admonish one another in all wisdom;
and with gratitude in your hearts sing psalms,
hymns, and spiritual songs to God."
-Colossians 3:16

Love & Happiness

Kelly & Family

P.S. Jenny B. ~ I'm glad you enjoyed the pics:) I knew if I got a rise out of anyone it would be you!(Bald joke) I think we share the same sense of humor...Maybe we are both just warped:) Love You!!!!!


Thursday, August 28, 2003 8:40 AM CDT

Good Morning to Everyone this Thursday!!!

I was going through some Picture CD'S from the Relay for Life, and the past few weeks:) It is funny to see Carl with such a shiney bald head:) When he left for NY, his hair was really taking off!!! I can't wait to see his hairy little head when he gets back home:) I do have to admit though, a small part of me will miss mooching up his little bald head:)

Thank you for all of your Prayer, and to all that signed on to John Franks website, and left notes for their family!!! I know I can always count on our Faithful Prayer Warriors, You are all so Amazing!!! Just look at the miraculous year Carl has come through!!! He would not be here with us today, if it were not for the Countless Prayers, and the Loving Grace of the Good Lord Above!!!! Keep the Prayers coming for the Frank family, John is improving steadily each day, and I can only Imagine the Joy, and Excitement, the day he opens up his eyes and sees all of the Love surrounding him!!!! God Bless the Frank Family+ www.caringbridge.org/mn/johnfrank

Carl is having a very typical antibody week. His pain has been consistent, and so has the pain meds. Tom and Cat (our sweet nurse) have been trying to get just the right timing/dose combination to control the pain, yet to control the Monster that comes out in Carl after treatment. It becomes more stressful mentally, when leaving, and after leaving the clinic with the little "Tyrant" that Carl becomes from the Narcotics!!! I don't think a substitue pain med is as effective for the pain, so it is just something that we have to deal with until these two weeks are done.

This weekend Tom and Carl will be visiting Patti & Freddy our very wonderful cousins on Long Island!!! Patti's father "Pop" has a Birthday coming up, so a Party is in the agenda for this weekend!!! Pop is such a sweet man, Carl just Loves him dearly:) Pop is just like a magnet to Carl:) The first time that Carl met Patti's sister Donna, and her husband Bob, and Pop:) Carl warmed up to Pop like he has known him forever!!! It is very precious to watch the two of them together!!! Patti has such a Great family, when I met them last month, when Carl and I visited, I also felt like I had known them forever, such Sweet people we have been blessed to know!!!

Tom you will be Happy to read that it looks like we are about to get "Downpoured" On any minute!!!!! Bring on the Rain!!!!! I can't believe I am saying that, after being in so much rain, so often in NY, but we really need the moisture here for the crops!!!!

I wish you all a Very Nice Day!!!!! Take the time to Hugg someone you Love, and tell them How very much you do Love them, we never know what tomorrow will bring!!!

When he calls on me I will answer;
I will be with him in trouble, and
rescue him and honor him. I will
satisfy him with a full life and
give him my salvation.
Psalm 91:15

Love & Huggs

Kelly & Family


Wednesday, August 27, 2003 7:35 AM CDT

Did you know that an eagle knows when a storm is approaching long before it breaks? The eagle will fly to some high spot and wait for the winds to come. When the storm hits, it sets its wings so that the wind will pick it up and lift it above the storm. While the storm rages below, the eagle is soaring above it. The eagle does not escape the storm. It simply uses the storm to lift it higher. It rises on the winds that bring the storm. ~~~ When the storms of life come upon us ~ and all of us will experience them ~ we can rise above them by setting our minds and our belief toward God. The storms do not have to overcome us. We can allow God's power to lift us above them. God enables us to ride the winds of the storm that bring sickness, tragedy, failure and disappointment in our lives. We can soar above the storm. Remember, it is not the burdens of life that weigh us down, it is how we handle them. Those who hope in the Lord will renew their strength They will soar on wings like eagles...

Taken from the caringbridge website of John Frank ~

www.caringbridge.org/mn/johnfrank

Today I would like to dedicate Carl's webpage to John and his family. John and his wife Char are from Wabasso MN. On August 16th, John had a tragic accident and is in an induced coma at HCMC. I don't know John, I have met Char at Auntie Janets house a few years ago. Char does Home Interior Parties all over the area:) Many of you may know the Frank's and have already heard about John, there was a story in the Redwood Gazette about John too.

I just heard about John yesterday, and feel strongly about turning my focus somewhere other than Carl. Carl is doing so Great!!! He is a Happy boy spending some quality time with his Daddy:) The Frank family could really use some of our POWERFUL PRAYER as they wait for their, Husband ~ Dad ~ Grandpa:) to wake up.

The Frank family has created a caringbridge website to update family and friends about John's progress. In yesterdays journal, I could feel the power and energy of the Faith this family has!!! Their last update on John was very Encouraging, they are filled with so much Hope!!!

Please keep John and all of the Frank Family in your Prayers!!!!! God Bless you All

"For surly I know the the plans I have for you,
says the Lord, plans for your welfare and not for harm,
to give you a future with hope."
-Jeremiah 29:11

Love to all

Kelly


Tuesday, August 26, 2003 2:51 PM CDT

Good Afternoon on this Tuesday!!!

I spoke to Tom earlier, Well I should say when I called their room about the time I figured they would be back from the clinic, Carl answered the phone:) He said "What You Doin?" LOL then he said "What's Sydney Doin?" He sounds So Cute on the phone:) Tom said that Carl did have pain today. Carl only had one dose of pain narcotics though. They held off on giving the pre-med and then he only got one dose as he did start to have pain. We both feel better knowing that Carl probably has not developed a HAMA...yet!!!

What a twisted thought...Praying that your child has Pain with treatment??? To witness your child experiencing such a painful therapy, and to see and hear other children going through the same scenario is more than you could imagine, but then to actually feel better when they have pain... how sad. Just hoping that the therapy is working successfully is our justification.

Carl and Tom enjoyed their Harbor boat ride last night, Carl talked to me on the phone after, and told me all about the many things that they saw, including the *Statue of Liberty* (He pronounces that "right" now LOL) and the *Brooklyn Bridge* !!! Tonight the House is having a PICNIC Tom said it is sponsord by "Bloomberg" as in *Mayor*... we think??? It will be fun to hear how that goes later!!! How wonderful it is that the NY "Donald House" does Soo many fun activities for the patients and families that stay there, we are very Blessed to have such a Great Place to call Home while Carl is needing to be in NY!!!!

Sydney, Sam and I have been busy around the house!!! Yesterday I suggested to them to put on their bathing suits and wash the vehicles:) It was Hilarious watching them!!! They are in a "Earn Money" mode, as we are heading back to the State Fair on Friday!!! (They want a little spending cash) Sydney will be performing with the Birch Cooley 4H club their 2003 ~ "Share the Fun" The theme this year is (4H is Extreme Fun!!!) They won at the county level (For the second year) and will be performing their skit at the State Fair on Friday night!!! Last year they Won the "Top Two" at the State Fair!!! I thought we would go early, and spend some extra time checking out some of the things we did not get to see last Saturday while we were there. They are both very excited to be going back to the "Fair" again!!!

Thanks everyone for visiting Carl's website as often as you do, and for all of your Encouraging words!!!! It sure makes our day, to log on, and read your Great Messages!!! It makes it worth the time spent "Journaling" about Carl's day!!! Thanks to all of you too, for remembering all of us in your POWERFUL PRAYERS!!!! God Bless

Please remember in Prayer, all of the Loving people we have met over the past year, also fighting a battle of their own. We appreciate So much, all of the support we get from them, our lives have been So enriched, we are Thankful to have met so many Wonderful families that understand, and are always there to offer such comfort!!!

"Then your light shall break forth like the dawn,
and your healing shall spring up quickly."
Isaiah 58:8

Love & Prayers

Kelly


Sunday, August 24, 2003 8:32 PM CDT

Monday afternoon update:)
Carl had a good first day of Antibodies. Tom said Carl had no pain at all?? That is ok, but could also be a sign of Carl developing a HAMA (built up an immunity to the antibodies) this would be good, but we are hoping to have him complete this fourth round entirely before developing a HAMA, to achieve the maximum benefit from this treatment. Please Pray that Carl is able to complete these two weeks without developing a HAMA just yet.

Tonight Tom and Carl are signed up to go on a FDNY Harbor Boat Ride!!! It should be a nice outting for them:) Carl was napping after treatment, so he should be all rested and ready to go!!!

Have a Great Day Everyone!!!

Love

Kelly
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Good Evening this Sunday!!!

Tom and Carl are safely back in NY:)

Room No. 511

Phone No. 212-639-0511

Tom called about 6:30pm Mn time, and they had just arrived in their room. They were going to go downstairs to a carnival that was going on at the time, Carl talked to me for a few seconds to tell me that *Spiderman* was there:) They are getting settled into their room right now, and preparing for tomorrow to start the first week of round 4 of Antibodies.

It was very difficult leaving them today at the airport, lots of Huggs and tears, I told the kids (Syd & Sam) that this is the best thing for Carl to be doing, it is Sooo hard to see them leave, but we need to do this so that his Cancer stays away. I don't know what I would do without these kids to help me keep it all together sometimes, you would think it would get eaiser after all of these times, but it just doesn't.

Our weekend started with a Surprise 40th Birthday Party for Uncle Johnny on Friday night. It was a Great time, it was good to see so many people and of course family again:) We had alot of laughs, and should have some cute pictures of the Birthday boy:) Uncle John was wearing a cap with shoulder length gray hair attached. The cap said "It is better to be gray than bald" (Or something like that) :) It was alot of Fun and we were glad to be there!!! My highlight was getting a ride with cousin's Jenny & Jessie in David Lanning's new Mustang Convertable:) The girls said "Kelly do you want to go for a topless ride with us" :) It was Fun!!! The next morning we got a phone call from Uncle Johnny as we were driving to the cities, he told us about Auntie Janet having a little accident on her way out the back door. She fell and broke her arm:( We are sorry to hear about that, and hope Auntie Janet is managing ok with her arm.

We enjoyed our day at the Fair!!! We met Auntie Jill, Uncle Rick and Nick when we got there, (we got to see Kiri later that day) We made our way around the Fair, eating a few things, (mostly drinking lemonade, it was hot out) we went through the Beef and Hog barns. Nick has a cute pig:) Both Nick and Kiri did well, they each got Blue Ribbons on their animals!!! We went to the Kiddie Midway area, and the boys rode a few rides there:) They are really turning into ride junkies:):):) I am sorry to say that we could not find the fried Oreos, or any Italian Ices:) But did see *deep fried twinkies* (didn't try them) and later on the news saw a place with *shaved Ice*, it looked similar to Italian Ice, but probably not the same, we never saw it while we were out there, or we would have tried that to compare:) We left the Fair in the early evening, and stayed at the same Hotel as the McVenes' The kids enjoyed swimming with Nick & Kiri!!! The pool was kind of cold, so I think they enjoyed the Hot tub even more. We ordered Pizza for the kids, and they all stayed together while Rick, Jill, Tom & I went across the street to a Mexican place for supper!!! That was very nice and relaxing, after all the walking we did all day:)

So Tom and Carl are ready to start this next two week journey in NY. Carl is looking and feeling so good!!! It just kills me to miss out on these two weeks of hair growth:( His little fuzzy head is filling in more and more each day:) It will be fun to see the change though, when he does come home!!! Sydney, Sam and I have lots of projects to do while the guys are gone, then it will be back to school in a little over a week...YIKES where did the summer go???

Thank you all for looking in on us, and for keeping us in your Prayers Daily!!! It means So much to us just knowing you are always with us in Faith!!!

Thank You Lord for your Many Blessings!!!

One of them, when he saw that he was healed,
turned back, glorifying God with a loud voice.
Luke 17:15

Love to Everyone

Kelly


Thursday, August 21, 2003 11:08 PM CDT

HAPPY BIRTHDAY TO ~ Uncle John & Auntie Sheila today August 22nd!!!!! Wishes for a very Special day for the both of you!!! We hope you get out to Celebrate together:) All our Love to you on your Double Birthday!!!!! I will be Nice Uncle Johnny...No Turning 40 Jokes:)

New Pictures added ~ Sydney at the Fair!!!!!

It is almost Friday 11:20pm So I will say HAPPY FRIDAY!!!!

Sydney is still up doing her 4H records, as they are due tomorrow:( Tom is doing a Great job of assisting her with ideas. The boys are tucked in bed for the night, they have had quite a busy week playing very hard!!!

Tom will be flying out with Carl to NY on Sunday, for his 4th round of Antibody therapy. This trip will be for two weeks, and then Carl should have an eight week break before having to go back for round five!!! We are very Excited having this long stretch to look forward to.

As Sydney mentioned in her journal, we are heading to the cities on Saturday morning to take in the State Fair!!! I heard Sydney say earlier "We will have to put a leash on Sam at the fair" I said Why? It's no different than walking around on the streets of NYC with him:) The fair is very crowded, and busy too. We will have to look for those Fried Oreos Jenny:) Cheese Curds are bits of cheddar cheese dipped in batter then deep fried (Thats what they are Ann) :) They are SOOO Good!!! The State Fair offers the largest variety of ....Anything on a stick:) Each year there is dozens of new concoctions to try!!! I am hoping to run across *Italian Ices* not that it is something new out there, but something that I didn't look for, or notice being there before:) It should be a fun day!!!

When we were kids growing up, the State Fair was always such a Bitter-Sweet Event!! It was Loads of Fun, but was always the last Hurrah before heading back to school:( I can remember my folks taking us out to the fair with Cousins Tammy & Todd, dropping us all off for a whole day with $10.00 each in our pocket:) If we were foolish (we often were) and played silly games, our dollars dwindled fast:( We have lots of Great Memories at the Fair!!! As the kids get older, showing their animals at the county fair, if they win a "State Fair Trip" then they will be eligible to bring their animal to the State Fair and show against the Best of each of the Counties!!! Something for them to work for!!!

Wishes for a Great Weekend for all of you!!!

God Bless

"We will go with our young and our old; we will go with
our sons and daughters and with our flocks and herds,
because we have the Lord's festival to celebrate."
Exodus 10:9

Celebrate your Loved ones, Celebrate the Presence of God

Love & Prayers

Kelly


Wednesday, August 20, 2003 1:09 PM CDT

Hi it's sydney

we are busy getting ready for the weekend. On Saturday we
will drive down to the state fair for the day. Kiri will
be showing her chickens, and Nick will be showing his pig.

It will be fun to see them there at the fair. We are looking forward to eating mini doughnuts and cheese curds. I will eat some for you grandpa Bladon:)

Sam and Carl have been in and out of the house playing all morning, and they are wating for their gator battery to recharge.

Yesterday mom took Sam and I shopping for back to school supplies. I can't believe the summer is almost over, but we are excited to start school again.

This year I will be in the middle school, & it will be different because I will not be able to get a hug from Mrs. Bloedow:( I will miss that very much. It will never be the same.

Thank you for checking Carl's website

Have a great day

Love Sydney


Monday, August 18, 2003 10:27 AM CDT

August 18th 2002 ~ One year ago today,

Carl was Diagnosed with Cancer, and our world nearly crumbled.

An early Guestbook Entry from Cousin Daniel Murphy:

"Carl Believe me
You can pull through this
You are Strong
You will beat this
Heard you got the car back
Just Remember to drive fast
Take Chances
And don't let them Catch You!"

My thoughts are with you constantly
Love Daniel

Look at Carl today!!!!! We are Sooo Blessed!!!!!

Carl has come a long way from a year ago. From cruising around the Mayo halls (Flinstone Syle) in his little Red Car that made him so Happy, to driving around his own farm (With Power) enjoying countless moments with his brother Sam, in his New "Gator" (A precious gift from Uncle Chuck) And Yes Daniel, "Carl did pull throuh this" !!!!! and we have Faith that He did beat this!!!!!

"Full Circle" Carl has come!!! From the first day hearing of this Horrible Diagnosis, to Carl enduring many months of chemotherapy, sickness, pain, to the joy of hearing "No Evidence of Disease" all in one year.

A couple of weeks after Carl started Chemotherapy, his sweet little blonde hair was gone.

After going through chemo, transplant, radiation, Carl is finally beginning to sprout that fine downy sweet blonde hair, and by the looks of it, should have a head full within a couple of weeks~ one year from loosing it:)

What comes to mind the most, when we reflect back to a year ago, is all of the Love we were showered with from all of you!!!!! The Support started the moment we made those painful phone calls to allert our family & friends of Carl's diagnosis. To actually say the word "Cancer" was the most difficult thing we have ever had to do.

We also met some very special people in Rochester at St. Mary's and the "Donald House" that we still connect with today!!! We are very Blessed to have crossed paths during this difficult time of our lives:)

We will never forget how much it meant to us when you came to offer support those first weeks in the Hospital, and the Rochester "Donald House" All of your notes on Carl's website (was created a year ago too) We were in tears many times, reading your encouraging words, and Loving thoughts!!! We owe all of our Strength to the Lord Above, and to all of you for never giving up on Carl, or us!!!!!

Your Support gave us the Confidence that we carried through this whole year, and continue to hold on to!!!! We still look to you for Prayer, and encouragement, and you are always there, as we feel that Confidence!!!!!

Thank You Everyone for sharing this year of Carl's journey with Cancer!!!! This is a Day of Celebration, we are Celebrating "SURVIVAL"!!!!!! "Carl is Strong" Danny!!!!!!

Carl "Drives Fast"!!!!! And he definately "Takes Chances"

And he won't let them "Catch him" :):):):):)

Thanks Danny for that very Special Guestbook entry, I will never forget it!!!!!

God Bless you all!!! We Love You Dearly!!!!!

Prayer Requests ~ Morgan Barnes, was admitted to the Hospital this weekend with a fever. Please Pray that this is nothing serious, and the scans that her parents are waiting for come back completly clear!!! www.caringbridge.org/nc/morganbarnes

Please Continue to Pray for Carl, as he starts his new year as a Survivor!!!!! Pray that Carl's antibody treatments keep the NB away forever!!!

Pray for all of the children everywhere, those just beginning their journey with cancer, those managing their chemotherapy treatments, those that are still trying to clear their bodies after that one year from Diagnosis, for those children that have lost the battle, and earned their angel wings and for their parents that miss them so desperately.

Love & Prayers,

Kelly & Tom

Bryan, Sydney

Sam & Carl


Friday, August 15, 2003 9:03 PM CDT

Hello everybody it's Bryan,

Yesterday we all went to the Renville County fair. Sydney got Reserve Champion Junior showman with a Beef Cow that she barrowed from the Nelson Family a very gentle cow. Her steer "Bear" He really lived up to his name because He knocked Sydney into the bleacher's. Later she replied with "I'm glad He is going to the Butcher! She ended up with a red ribbon and a few bruise's when showing her steer. She also brought a breeding pen of Bantom Chicken's. "Two Hens and a Rooster" which she ended up getting 2nd place in her class and placed six overall. She would have had an opportunity to go to the state fair but she was to young of age. She also baked some sugar cookies but I didn't get to taste them!! The judge gave her a blue but if I would have tasted them she would ended up with a purple!! If she would have made Snickerdoodles she would have got two Purple ribbons but she decided what type of cookie to bake. Sydney also participated in Fine Arts and Craft's but it's voted on buy the contestant's so she just recieved a participation ribbon. The outcome was very excellent and we are looking forward to seeing her participating in next year's fair!!

We all also went to the Demolition Derby last night and it was very fun. It was my very first time going to one and I was really fasinated when they smashed their car's into each other!! There was a guy that sat behind us and he was saying "Andy hit that bleeping bleep bleep bleep you bleeper"!! I think Sammy and Car-Car really liked the Derby and I hope they didn't pick up any new words!! I'm really glad we are back in Minnesota because it would really stink to get caught in the black out in New York City!! We might have been stuck at the Ronald Mcdonald House with no light's. Sorry guy's back in New York because we live in the MidWest!! Carl's definitley glad to be home because he's a very happy boy and always has a big smile on his face.!!!

Thank you Freddy and Patty for sending Car-Car's chicken in the mail!! It came yesterday and Carl was excited to show sam, Sydney, and Tomma it!!

Goodnight Love,Bryan Kelly, Tom, Sam, Sydney and Carl


Wednesday, August 13, 2003 7:23 PM CDT

Hello to everyone tonight!!!!!

THANK YOU FOR YOUR SUPPORT WITH LOVE AND PRAYERS!!!!!

The world of Cancer is truly an emotional Roller Coaster. You never know how to feel, if you feel Happy, you fear that something will happen to Burst your bubble. Just when you are gliding along without event, you get jerked around unexpectedly, and shook right to the core. You never feel safe letting your guard down, just when you do, you fly right to the bottom and question how you will ever get back up again. We appreciate all of your support, it makes the ride seem easier, knowing you're with us, experiencing these same feelings. I appologize for taking you through these ups and downs of uncertainty, when you really don't need to be on this ride too. But we do THANK YOU for joining us.

Carl had his MRI this morning. First of all I will back up and mention that I emailed Dr. Kushner last night. I did not get his reply until after the MRI was done. In his reply he said "We would not do a MRI- It will show many abnormalities due to 1) Bone Marrow involvement at Diagnosis, 2) The many Bone Marrow Aspirations/biopsys done since then; and 3) Stem-cell transplant with regenerating Bone Marrow. Well go figure, this already was done before I found out that it was not necessary!!!! Dr. Kushner also said that the spots were very likely from the bilateral biopsies just performed last week. He said that MSKCC does NOT routeinly do both PET Scans and MIBG scans.

So what does all this mean??? I don't know for sure. I noticed that Dr. Arndt also got a copy of Dr. K's email reply to me. When I met with her, she relayed this same information to me that I read in Dr. K's email. But she made mention that the spots were not in the same place that the BMA/biopsies were taken??? She advised that nothing more would be done at this point. I have also learned from many emails that I have received since, that the PET Scan can light up for many reasons other than just NB. It can light up a spot from inflamation, and injury, a growth area, etc. At this point, we will just put this behind us, and believe that this is nothing to worry about!!!

We are not sure why this scan was ordered up at Mayo? Carl did have one in Nov. 02, but this is 9 months ago, and alot has happened with him since then, and with no PETs to compare it to inbetween, it is kind of hard to read this?? Since his MIBG'S have been clear for some time in NY, and his BMA's clear, we should have no reason to believe these spots are indeed a relapse. The antibodies that Carl is being treated with in NY are specifically for NB cells in Bone Marrow and Hard bone. If cells truly were there, they should NOT be "taking off" after 3 rounds of antibodies!!! Although always keeping in mind, anything is possible when dealing with this Horrible Monster NB.

It is very hard to just discount these results, but we must believe that Carl is ok, and God is watching out for him and all of us!!!

Yesterday morning before we walked over to the clinic for our first appt. with Dr. Arndt, Sam, Carl and I took our bags out to my car to get that done ahead of time, then we would just need to round up Brayn (he was sleeping in) and go check out of our room. We were trying to find our car, and made about 3 trips to different levels of the parking ramp before we did locate our car. As we walked back into the Hotel the second and third time, I looked down at the floor (carpeted walkway from the parking ramp to the Hotel) I noticed a couple of feathers laying on the floor. Not just on one walk way, but on two of them!!! At the time we were in a big hurry, trying not to be late to the clinic!!! Later I remembered the feathers, and wondered if this was a sign (feathers are a sign of your Guardian Angels watching over you) I do believe in this, because I have had several convincing happenings, that could not have been just coincidental. Anyway, after all of this PET Scan ordeal, last evening, I thought back to those feathers that oddly I noticed in both of those two walkways earlier in the morning, and I did feel a sense of comfort from then on!!!!!

Last night we changed our residence to THE Hawthorne Suites, I wanted Carl especially to have FUN!!! (they have a cool water park in their pool area) I made sure that Carl was not left accesed (mediport) so that he could enjoy a fun evening for the first time at this pool!!!! We stayed there for New Years Eve this last year with many of the Robinson family, and the kids all had a Ball!!!! All except Carl, as he had a HICMAN at the time, and could not get it wet. So the boys had a Great time in the pool last night!!! Brayn did coment though, that it was just not the same without all of his cousins there too!!!! Hey you guys, lets do that again sometime huh??? :):):)

I was never so disappointed in my life, that I did not get to watch Sydney show her animals today at the fair:( I think Syd was also very sad. The other kids try so hard to understand, and not feel "unimportant" to us (Mom & Dad) but how can they not get those feeling inside when this kind of thing happens over and over again. I feel like I am missing those really special events. How can you make this up to a 10 year old little girl that was looking so forward to her Mommy being there to watch her show her animals for the first time at the fair!!!! It really Hurts!!!!!! Thanks to Auntie Jill for filming the day for us, maybe we can spend some time watching the tape, and talking about her accomplishments!!!!

I will have to fill you all in later on the "FAIR" I guess Tom had quite an experience himself running down the midway after the steer got loose:) Jill did not get footage of this part:(

Thanks Again to all for all of your wonderful Prayer!!!! Yes Jenny "PRAYER IS POWERFUL" I do say that, and I do believe it as well, look at how Blessed we are!!!!!

"I will restore health to you,
and your wounds I will heal."
-Jeremiah 30:17

God Bless

Kelly & Tom
Bryan, Sydney,
Sam & Carl


Tuesday, August 12, 2003 5:56 PM CDT

Hello to all this Tuesday evening.

We are now facing fear and uncertainty ourselves. Today I met with Dr. Arndt about Carl's PET Scan results. There were two spots in his pelvic area that lit up on the scan?? The Dr. is concerned about this report, and not really sure what to make of this. Carl had a PET Scan in Novemeber, and these spots were not there. Dr. Arndt said that this type of scan is fairly new, and there is a chance of a false positive reading? I told her about Carl's MIBG, and Bone Marrow Asp.s being negative and that is a good sign. I viewed the scan right with her in the office, and you could clearly see these two highlighted spots that are in the bone of two areas of the pelvic region.

I am in total shock right now, and very confused about everything. I, like every parent with a child fighting NB lives every day in fear of this very thing happening. No matter how much you believe and trust, it is a reality, as it is happening around us every day. Many children have never got to this "NED" status. Others are, for what seems only a short time, as relapse statistically happens within the first 12 to 24 months from diagnosis. I don't know if this is a Relapse, I only know how devistated I feel right now, and can't Imagine how hard this will hit if it indeed is. Carl is only 6 days away from his one year anniversary of being diagnosed. I feel very emotional with just that in itself. We are staying in Rochester again tonight, and Carl will have a MRI of his pelvic area tomorrow morning. I will then meet with Dr. Arndt again about 1:00pm to discuss the results.

Please Pray Very Hard that this turns out to be a false reading, and not a Relapse for Carl.

Love

Kelly


Monday, August 11, 2003 6:37 AM CDT

Hello this Evening!!!!!

Wonderful News to Share!!!!!

Daniel Hammer has not Relapsed!!! He had a MRI, and the Mass that showed up on a CT last Thursday was completely gone??? No explaination, it is just gone!!! We are witness to yet another MIRACLE!!! Thanks for all of your POWERFUL PRAYER!!!!! I truly Believe that all of the Prayer going on, is making a difference in all of our lives!!!!! PRAYER IS POWERFUL!!!!!

Todays attempt to scan (without sedation) did not go quite as well as I had hoped:( The PET Scan went like a dream, Carl layed there and I think actually went to sleeep. They got all of the pictures that were needed and Praised Carl for such a Good Job of laying still:) We then went to another room for the Head CT scan. A whole different story:( To do the head, the child must lay there, with his head in a little spot that actually hangs their neck in a position feeling like you are looking over backwards at the floor. Well every time in the past we have tried to do this without sedation, we get the same results (TOTAL PANIC) I don't know why I don't remember this and tell them from the start that he needs sedation for the Head!!!! So to make a long story short, the CT was not done, and can't be done tomorrow either. I will talk to the Dr. tomorrow to see if we can re-schedule it on one of the days I will be back in Rochester (Thurs to bring Bryan & Syd to camp, or Sept. 2nd to bring my Mom to an appt. to consult with a surgeon about her shoulder replacement. Otherwise I may see if we can get this taken care of up in Willmar next week, as they did a set of Carl's CT.s before we went to NY in January, so they have records of his CT.S too. Auntie Jill came with me that time, and I'm sure she remembers how difficult a time we had trying to get Carl to relax and do these scans without sedation. It was a NO Go then too. I'm sure as he gets older, he will feel more comfortable, and not mind this as much!!!

The boys swam this afternoon, and burned off alot of energy:) Sam is still napping right now!!!

We are glad that we will be able to head back home tomorrow afternoon!!!!! There is So much Excitement going on at Home, Sydney is at the Renville County Fair with her chickens, and her Beef Steer, and other projects!!! Wednesday she will show her animals. Auntie Jill and Kiri will be coming to watch the shows too!!! She has been working very hard on washing, drying, grooming, walking and just doting on her Steer:) This past weekend she kept very busy between her chicken washing, and Steer chores!!! Today, Sweet Cousins Jenny & Jessie were going to help Sydney get her animals to the fair, and all set up in the barns!!!!! These girls have been just "Priceless" the past couple of weeks, helping Tom and I out with Sydney while I have been gone with Carl. You attend 4H all year long, but it is the last couple of weeks before the fair (and the last weekend) that are the very Craziest!!!!! THANK YOU Jenny & Jessi for all of your Much Appreciated Help!!!!!! Also, the girls and Syd made a Beautiful "Welcome Home" cake for Carl, Bryan and I on Thursday, it was So Good Too!!!!! THANK YOU THANK YOU!!! We Love You So Much!!!!!

Wishes for a Wonderful Evening to All!!!

Love & Prayers

Kelly, & Bryan
Sam & Carl:)

<<<<<<<<<<<<<<<<<<<<<<<>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>



Good Morning to Everyone!!!

It is 6:30am and all is well:)

Bryan, Sam, Carl & I drove to Rochester yesterday afternoon. We are staying at the Kahler, if anyone would like to phone us here, you may call 507-282-2581 that is the front desk, then ask for room 800

We needed to be here early this morning, so to avoid the stress of leaving the house by 4:00am to drive through rush hour traffic, several detours and crabby tired children, we decided to make the trip yesterday. The boys have enjoyed swimming so far!!! The first time Sam jumped in the pool and plunged to the bottom of the shallow end, I almost had a heart failure, but then I quickly realized, and remembered that he has been swimming in Redwood for the past month and just finished his level one swimming instructions. Thats what being away from home does to a mom, kind of sad:(

Carl and I will leave shortly to head over to the clinic for labs, then to Methodist for his PET scan. A Wonderful Anesthesia nurse phoned me last week to try to coordinate Carl's head CT with the PET scan, since both scans will only take about 15 minutes total, then we will not have to shuttle over to St. Marys to have the CT scan done. We are also going to try to get this all done without sedation:) We will see how that goes, it will be easier on all of us if we can accomplish this one!!!!! Keep your fingers crossed for me:)

Tomorrow we will repeat Carl's hearing screening to follow up and determine if any further hearing loss is detected, resulting from the Carboplatin chemo used during treatments and transplant. Many children who have completed similar protocols with the use of these drugs are now wearing hearing aids. So far Carl's loss consists of only High frequency, and as I understand, whatever he has lost will have already happened, and should not get worse. Then Carl will be seen by Dr. Arndt tomorrow afternoon to review his situation. We are looking forward to visiting with everyone, a few weeks ago when we were here with Carl (due to his not feeling well scare) We got to see many of our old friends that we came to know so well over the past year, the Nurses, our Social Worker, and Receptionist's and the Ped. Oncs that all Love Carl so Dearly!!!!!

Carl will be able to swim after todays appt.s as his port access for todays labs, should get de-accessed as soon as we are through:) So the scheduling of these appts. was perfect in that sense!!! It sure makes it more enjoyable for Carl to be able to feel like a normal child and not have to be excluded every time!!!

Thanks for Stopping by and Thank you for all of your continued support and Prayer!!!

Please continue to keep Daniel Hammer and his family in your Prayers, as they face this terrible situation with fear and uncertainty.

Please Keep all of the children fighting Cancer everywhere in your Powerful Prayers!!!

God Bless,

Kelly
Bryan (Crash Creamer HEhehehHE- It's a mail vehicle right?)
Sam and Carl:)


Saturday, August 9, 2003 3:59 PM CDT

Hello everybody, It's Bryan

Well we got home from New york and Chuck picked us up from the air port. The first 15 miles down the road Carl was crying because he didn't want to be in his car seat. I can understand why he was upset because we had a trip over two hours on the plane and then we had another two hour trip on the road back home. When we got home Tomma made some ribs and mashed potato's and they where mmm deliscious.

Yesterday It was Tomma's Birthday Birthday and we had a bond fire and celebrated his birthday. Rah-Rah, Katie, sydney and I drove around on a golf cart. I ended up taking out a bushel of corn. John came up with a nick name for me my name is Crash Creamer. I also ran over my Mom's car and it left green marks by the head lights.

In baby Jacob's honor we had a baloon release. My mom met his family at the Rochester Ronald Mcdonald House last year. My mom took some pictures of it so stop back later to see them! My Mom would like to write something!

Have a good evening love, Bryan

Hello to All!!!

Thanks for checking in on us this weekend:) And Thanks for all of Tom's Birthday Greetings!!!!

I would like to ask all of you to keep a very special little guy in your Prayers. We learned Thursday night that Daniel Hammer will soon be heading back to NY to have scans and testing done. Daniel was just scaned back in June and all was clear. A couple of days ago, Sara and Vic noticed a bump on Daniel's head. He was scaned locally, and it was deterimined to be a mass of some sort. Please Pray very hard that this turns out to be unrelated to his NB disease, and that this mass be completly benign. Daniel and Carl have very similar cases of NB. We first found out about MSKCC from Sara, Daniel's Mom, (They are also from MN) The Hammer's are a very kind, Loving family and have done alot of Praying for our family since our paths have crossed. I can't explain the sinking feeling that came across me when I read Sara's words about Daniel. I feel in my Heart that Daniel will be ok. Please join us in Prayer for Daniel.
Daniel's website is www.caringbridge.org/mn/danielhammer

Dr. Kushner emailed us yesterday to report that Carl's Bone Marrow Asp/biopsies and MIBG Scan were clear showing no signs of NB. I am very Happy to have gotten such wonderful news, but know that there are no Guaranties with this disease. We are Thankful for every day that we have together with Carl, and we continue to Pray every day that we are given another.

Please Pray for all of our Friends in NY, Christi, Jay, Morgan, Sophia, Daniel, Harrison, Michael, Katie, Sarah and all of those I am forgetting right now.

Please Pray for all of our Friends in other places, Eric & his Grandma Judie, Elijah, Zane, Brittany, Kala, Jorge

And remember in Prayer our Friends that are battling other illness, Jacob, Maya, The Royal Kiddos

Thank You and God Bless

"But as for that in the good soil, these are
the ones who, when they hear the word, hold it fast
in an honest and good heart, and bear fruit
with patient endurance."
-Luke 8:15

Love

Kelly & Tom
Bryan & Sydney
Sam & Carl


Wednesday, August 6, 2003 10:23 PM CDT

Hello everbody,It's Bryan

Yesterday we went on a bus tour. It was really cool. It went all over Manhattan and we saw Time Square, Madison Square Garden and a lot of famous points in New york City. We almost got hit by tree's and street lights because we sat on top of the bus. We got wet some but most of the trip it didn't rain.

Today I went to the teen group at the Ronald Mcdonald House. We did Taro cards and it told me my future. We also listend to music and talked. Nobody wanted to watch a movie so it ended a little sooner as far as fun goes.

Next week me and sydney are going to camp. It is sponserd by the Mayo clinic. Carl can't go though because he's to young. They are going to have a jello fight and other activities.

Tommorrow we are leaving for minnesota. Carl is looking forward to uncle Chuck picking him up from the airport.

goodnight and love to all,
Bryan, Kelly, and Carl


Wednesday, August 6, 2003 5:54 AM CDT

Good Morning to All!!!



HAPPY BIRTHDAY TO ~ Patti Hauch today August 6th!!!!!!
thanks Ann for the tip-off:)
We hope you have a very Special Day!!! Maybe you will Celebrate with some "Italian Ice" :) Love to you and Freddy!!! Enjoy Your Day!!!

HAPPY ANNIVERSARY ~ TO Fred & Tracy Fischer (Eric's Dad & Mom) We hope you two have a very SPECIAL day, how Great you get a night out alone together!!!! Enjoy your Day!!! Our Love to the Fischer Family!!!!!

The boys are still sleeping (this feels like at home) Carl is not due back to clinic til 12:30 to see the Docs, then his last procedure (MIBG Scan) is at 2:00pm. I will bring Carl back into the clinic tomorrow morning before we leave, I asked about having his blood (HAMA) drawn here, even though it will be a week before they wanted us to do it at home. We were told that would be fine, it will not change in a week anyway, that is just the schedule they keep for blood to be sent in. Then we will not have to go into the Hosp. and do it this time at home.

Last night the house took us on a City Bus tour!!! It was one of those Red double decker bus' with the open top:) We had a Blast on this trip!!! I will not say any more, Bryan is excited to Journal about our adventure, so I will let him do that later!!!!!

Hope you all have a Great Day!!!

Watch for new Pictures, and for Bryan's journal later today:)

Love & Prayers

Kelly, Bryan & Carl

P.S. Ann thanks for your great guestbook entry!!! We too enjoyed the supper!!! It was very good!!! Thanks again you guys for everything!!! Anytime you have time to send pics would be Great!!! No Rush, just when you get a chance!!!
Thanks Again:)

P.S.S Thanks to all for your Help with Baby Jacobs Balloon Release for his first Birthday!!! Karla now has (OVER) 365 Balloons being released from everywhere:) How Fun!!!

P.S.S. Please Pray for clear Bone Marrow for Carl, and Clean Scans. Also keep all of the children here in NY and everywhere fighting Cancer in your Powerful Prayers!!!


Monday, August 4, 2003 9:32 PM CDT

Good Morning on this Tuesday!!!!!

Carl and I just got back from the Bone Marrow Asp., we will need to return to the PDH later for an injection for tomorrows MIBG Scan. Carl is still coming out of the Sedation, and is watching Dora at the moment:)

Hey Uncle Chuck!!! The Relay Picture CD finally arrived yesterday!!! I plan on adding a few of these pics later, I want to go down to the Computer room and use thier software for the group picture:) They look very good, Thanks for sending this to us!!! We hear that you may pick us up from the airport on Thrusday!!! We are So Excited to be coming home (Bryan could stay for a couple more weeks though, he Loves it here) We Love it too, but can't wait to get home and check out Sydney with her very well trained Steer:)

Thanks Jessie & Jenny for spending so much time helping Sydney out with her Steer!!!! It sounds like you girls are having just as much fun!! We really Appreciate all of your time, and for helping out with Sam too!!!!

Matt & Mandi!!! Thanks for sending us the Relay, and Bon fire Pics of the kids and "Scarecrow Matt" :):) When I opened them up and looked at them, it made me SOOO Homesick:( It was fun to see the Hay Ride goof balls in action, the one of Sam is too cute:) Thanks for taking me back to some very Happy Thoughts!!!!!

WE LOVE ALL YOU GUYS AND MISS YOU SOOO MUCH!!!!!!!!

This morning at the clinic I got to see Sweet little Christi Thomas in the Playroom:) She Looks SO Good!!! It breaks your Heart to Look at such a Beautiful child, and know that such a Horrible disease is lingering in that childs body. I wonder, how can this be possible?? for a child to look so well and be So Happy. I also saw Angela, and she was in tears this morning. Please continue to Pray very hard for this little Precious Girl, and her family. The Thomas' need Strength and Courage to keep up this FIGHT!!! God Bless the Thomas Team!!!
www.christithomas.com

Please keep all of the children, fighting Cancer, wherever they may be, in your Prayers, that a cure may be found, and suffering will no longer be.

If anyone would like to Join in the Balloon Release for Baby Jacob, please let Karla know how many Balloons you could help her out with:) She is trying to reach a goal of 365 balloons, for each day of Jacobs life!!! She would like you to attach a paper with Jacobs website on it, written in permanent marker. It will be fun to find out if anyone finds one, and signs Jacob's website!!! Here is his Webpage address: www.caringbridge.org/wi/jacobdavid
August 8th is Jacob's 1st Birthday, he shares a Birthday with Tom!!!!! A quick little bit of information: Carl and jacob's mom Karla both share a Birthday on December 28th!!! How Cool is that!!!

Our Long Island Cousin's Keith and Justin came into the city yesterday to spend some time with us!!! We had alot of Fun, even though it rained like mad:) We got to see a new area that we have never been to, it is called the "South Sea Port" Huge Waling ships are docked there, and the area is loaded with things to do and see!!!! Thanks again you two for taking the time to come in and show us around!!! Bryan, Carl and I took a bus back to the "Donald House" it went very well, at one point we were passed by about 4 Fire Trucks. When we got a little further up on 1St Ave, we drove by the scean. There were at least 6, or more trucks parked. Carl kept calling out "What the Heck are they Doin???" Everyone sitting around us was giggling, which made him do it even more:) Something about seeing those trucks zoom by with flashing lights, and an American Flag waving off the back of the truck, gives you a big lump in your throat.

Thanks Everyone for continually checking in on us, and for all of your Love and Support!!!!! We don't know what we would do without all of you!!!!!
Big Huggs to Everyone (((((())))))

God Bless

Kelly, Bryan & Carl:)


<<<<<<<<<<<<<<<<<<<<<<<<>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
Hello everybody, it's Bryan

It was great this last weekend Freddy and Patty invited us to stay with them. When I got there I was covered with kisses and they spoiled us rotten. They bought Car-Car some ballons that were orange and a Nemo ballon. They also bought him a singing chicken that does the chicken dance. They bought me a Islander'ss cap and shirt. That was really cool and I really appreciate that.

On Saturday we went to Sand Point museum. It was a big castle and inside they had an exhibit called Beakmen's World on tour. There was interesting facts about Dinosaurs,the Human Body,and the Ice age. For supper we had chinese food and it was very deliscious. I really enjoyed the ribs, Beef and Broccili and egg foo young. We stuffed our faces like big pigs but,we really enjoyed it a lot.

After supper Freddy treated us to Italian Ice's and it really hit the spot. It's the best thing I have ever tasted that was sweet. I hope a franchise like this starts back in Minnesota. Whenever your in New York it's the number one thing to try.

On sunday Keith,Ann,and Christopher came over and I met them for the first time. It was great talking to them and they have a good sense of humor. We also went over to Bob and Donna's house Patty's sister. I saw pop and he loves Carl to pieces. I really enjoyed talking to them and I really like Harley their Golden Retriever.

Thank You Freddy and Patty for inviting us over.

Ps. Thank you Keith and Justin for coming to the city to spend time with us today. we had a great time at the Pier. We didn't mind the rain it was a riot we will remember it forever!

Goodnight to all love, Bryan, Kelly, and Carl

here is a psalm I chose,
I trust in your unfailing love; my heart rejoices in your salvation. I will sing to the Lord for he has been good to me.
Psalm 13:5-6


Sunday, August 3, 2003 8:29 PM CDT

Hello this Sunday evening!!!!!

Added New Pictures:)


What a wonderful weekend we all had here in NY!!! Bryan, Carl and I stayed with Freddy & Patti at their Beautiful Home on Long Island:) It was such a Great time, we enjoyed every minute!!! Keith, Ann & Christoper came over to see us today before we left to head back into the city. It was So much fun seeing them, and spending some very relaxing time visiting!!! THANK YOU Freddy & Patti for your most Generous Hospitality!!!! And Thank You Keith, Ann & Christoper for making the trip out to see us today!!!! You are all So Amazing!!!! We Love You Guys!!!!!

Be sure to tune in tomorrow...Bryan will be Journaling about our Beautiful Weekend On Long Island:)

Tomorrow will be a free day for Bryan, Carl & I:) I do need to run over to the clinic to pick up his Accutane, as he will start his second cycle tomorrow, for two weeks. He is not due back in clinic til Tuesday morning for a Bone Marrow ASP. then he will get an Injection of Isotope in the afternoon, which is a radio active dye that shows NB Cells, this is in preparation for an MIBG Scan on Wednesday. Thursday we will be flying home!!!!! Bryan is very Sad we will be leaving:( He is trying to savor every moment while we are here:) He still has a couple of things that he would like to take in before we leave.

Please Pray for Clear Bone Marrow, and scans for Carl!!!

A friend of mine Karla Schroeder, Mom to little baby Jacob (some of you follow Jacobs webpage) www.caringbrideg.org/wi/jacobdavid Has asked me to post a note on Carl's webpage:) Little Jacob will be celebrating his First Birthday on August 8th!!!! Also the date of Tom's Birthday!!!! Karla came up with a very sweet way to Celebrate Jacob's first Birthday:) A balloon release on August 8th!!! She is trying to get Family & Friends everywhere to join in on this balloon release, so that 365 Balloons may be released for Jacob!! One for each day of his life!!!! This is a very Special Celebration, as Jacob is a very Special Baby, he has Survived, and made many Big accomplishments that some of his Dr.s said he never would. Little Jacob has proved these Dr.s wrong!!!! He is alive, and thriving!!! Karla and her family believe that there is a Purpose for Jacob, as he is a Very Special Gift from God!!! Their Unconditional Love for this Little precious Baby is Proof of that!!!!! If Anyone that would like to help reach Karla's goal of 365 balloons, please go to Jacobs webpage, and let her know how many ballons you will release for Jacob!!!! Thanks Everyone, and here is her webpage again: www.caringbridge.org/wi/jacobdavid

"For I know the plans I have for you," says the Lord.
"They are plans for good and not for evil, to give you
a future and a hope."
Jeremiah 29:11

Until Tomorrow:)
Love & Prayers to all

Kelly, Bryan
& Carl


Thursday, July 31, 2003 11:40 AM CDT

Hello Everyone!!!!!

Added New Pictures!!!!


HAPPY BIRTHDAY TO ~ Sam today July 31st!!!!!!!!!!!!!

Happy Birthday to you, Happy Birthday to you, Happy Birthday dear Sammy, Happy Birthday to you!!!!!!!

This is Sammy's Birthday, Birthday, Birthday, This is Sammy's Birthday, lets count the years away 1 2 3 4 5 YEA!!!!!!!!

Have a Great Birthday today Sam!!!! We hear you are having supper at Grandmas tonight!!!! That sounds like So much fun, we are missing you very much, especially today on your 5th Birthday!!!! Mom is Sad that she can't be there today to Hug you, and Mooch you up, but I know you will get Lots of Love today from Everyone!!!!!!!! And I will make up for it when we get home:)

Today Carl's treatment went very well!!! He woke up in the best of moods this morning, and even wanted to walk (leave stroller behind) all the way to the clinic. He made it almost all the way there, before asking to be carried. He made it almost entirely through his treatment without pain, but just when I thought we were out of the woods, the Owies started:( He did however make it with only 1/4 of the pain meds he usually gets each treatment!!! I hope his side effects (crazy behavior) is less today too!!!

The House is having a "Christmas in July" party tonight. With a dinner, and gifts for the children, I heard last years event was a Wonderful Party for the kids!!! We are looking forward to being there!!! Last night Bryan went to Bingo, and then to a Teen activity night!!! He said they played sherades, and then watched the movie "Candy Man" He said that he has met some really cool kids here. Two of his new friends are Jay, and Cookie!!! It is really nice that the House does things for the older kids too!!!

We hope you all have a Great Evening!!!!!

Please keep all of the children fighting Cancer everywhere in your Prayers!!!!

Please say an extra Prayer for Lea Kelly and her family today as they lay their little baby Damien to rest. Lea stayed at the RMH in Rochester for almost a year as her little baby was in the PICU. He was a little twin to Patrick, and little brother to Dillon. Little Damien became an Angel last Saturday, he lost his battle with Pneumonia. God Bless the Kelly family.

If I rise on the wings of the dawn, if I settle on the
far side of the sea, even there your hand will guide me, your right hand will hold me fast.
Psalm 139:9-10

Love & Prayers

Kelly, Bryan & Carl


Wednesday, July 30, 2003 2:19 PM CDT

Hello everybody,It's Bryan

It's been really fun in N.Y.C. Today we might go for a walk and find some where to eat supper. Everyday Carl has to go to the doctor and get treatments and I'm shocked by his behavior because it makes him very upset, and he throws tanttrums. I never knew this before and I'm really shocked. He seems to calm down after he takes a nap. after that it seems the pain medicine has worn off. He only has two more treatments left this week and me and my mom are very glad.

My mom talked to our cousin's Freddy and Patty on Sunday and we are going to spend sometime at their house this weekend. They live on Long Island. I'm eally looking forward to meeting them and getting to know them. Carl and Tomma have spent some time at their house before and had a fun time. Tomma keeps talking about ribs that they orderd from a Chinese resturant and he thinks they are deliscious.

Have a good night and love to all

Bryan, Kelly, and Carl


Monday, July 28, 2003 7:14 PM CDT

Good Morning this Wednesday!!!!!

Just changed the Photos!!!! Will update after Carl's treatment today. Have a Great Day Everyone!!!

Love & Prayers
Kelly
<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Good Afternoon!!!!

Christi Update!!!!! Angela's Quote: "Dr. L. said, "It's like a miracle." (No Surgery Needed Today For Christi!)

Christi's chest tube stopped draining!!!! This Mornings X-Rays Are Very Normal!!!!! No Surgery needed, and Christi may be back at the "Donald House" in a couple of Days!!!!!

Thanks to Angela for letting us know Christi's update, and Thanks to all of our Wonderful Family and Friends that I know have been Praying So hard for this little Princess, Dr. L. told Angela, that he was also Praying for Christi!!!!! Please continue to Pray for Christi's Speedy Recovery, and for her Bone Marrow to Completely Clear!!!! We have Proof!!! "Prayer Is Powerful!!!"
<<<<<<<<<<<<<<<<<<<<<<<<<>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Good Morning to All, I just checked
emails and Christi Thomas is going back into surgery today about noon. She is having some problems with her chest tube still collecting fluids. Please keep Christi and her family in your Prayers, as she goes into surgery again, and for her recovery and Complete Healing.

Also Please remember in Prayer the other children here at MSKCC doing Antibodies, and other treatments this week, Jay, Katie, Josh, Morgan, Harrison. And Sophia who is finishing up her radiation this week.

Thank You and God Bless

Kelly
<<<<<<<<<<<<<<<<<<<<<<<<<>>>>>>>>>>>>>>>>>>>>>>>>>>>>>



Hello Everybody!!!, It's Bryan

we are in the process of entering new pitures but there are technical difficulties check back later!!!!

It's been great here in NYC and i'm having a fun time. It's my first time in the Big apple and I really enjoyed seeing the sites. My favorite part was seeing the Met's game taking a trip to Liberty Island, and Ellis island. It was very interesting reading facts and learning about how people immigrated to the U.S.A. I found out that the Statue of liberty is green because it was copper way back in the olden days and when it oxidates it turns it green.

The first night I was here we had an opportunity to go to a Met's game and I really enjoyed it alot. It turned out that they had a pair of box seat tickets so me and TOMMA sat by First base and The Met's dugout and we took some pictures of the players. We almost snaged a ball because one of the player's hit a foul ball and it went right over our heads. After the game I got a picture with Mr Met but, I was showing My Minnesota pride because I was wearing my Twin's jerzey.

We have walked around N.Y.C. and I have not seen so much traffic in my life.!!! I'm really fascinated by all the big buildings and steet vendors. The people that sell sun glasses are really annoying. I think the New York accent is really cool. I can't wait to show people my pictures when I get back home.

Last night they had a BBQ on 3rd floor terrace. Carl asked one of the volunteer's for a pop and he gave him a ring pop. Elmo showed up and Carl was beating him up and steping on his feet. An artist came to the BBQ so both me and CAR-CAR got a Charicature done of ourselfs. It was really neat and she was a very talented artist.

Tommorrow night we are going to see Finding Nemo the movie so that should be fun. I really enjoy getting to spend time with Car-Car and my Mom.

Good Night and love to you all,

Bryan, Kelly, and Carl.

Here is a psalm I chose

Trust in him at all times, o people; pour out your hearts to him, for God is our refuge.
psalm 62:8


Sunday, July 27, 2003 7:33 AM CDT

Good Morning this Sunday!!!!!

Happy Belated Birthday to Auntie Judy!!! Sorry we missed your Birthday last Sunday:( We hope it was a very nice day for you!!! All our Love!!!!!

Happy Anniversary to Grandpa & Grandma Robinson!!!! They Celebrated their 61st Anniversary yesterday July 26th!!!! We Love you Grandpa & Grandma!!!!!

Happy Birthday to Auntie Joy today July 27th!!!! We hope your day is very Special!!!!! We all Love you very Much!!!
Enjoy your day!!!

Tom, Bryan & Sydney arrived during my last journal on Friday!! We were able to go to the Mets Game and it was a very good time!!! Tom and Bryan were able to sit in box seats on first base line!!! They said it was Awesome being that close up. Sydney, Carl and I sat up in the stands with the rest of the group. We were right next to Virginia and Jay!!! It was alot of fun for all of us!!!

We had a busy day yesterday taking Bryan to see the "Statue of Liberty" then "Ellis Island" as we were entering the doors at Ellis Island, they were just about ready to start a live Play, about the History of Immigration. We got in on that, and really enjoyed it. It was a nice break from the Heat outside, it is very Hot here this weekend. After we got back to NY, we walked up to Ground Zero. Bryan especially wanted to visit this site, during his trip. We walked for quite a while after this, and discovered we were in China Town, and then Little Italy from there. We were very tired by now and got out of the crowds enough to catch a cab back to the "Donald House"

The House was having Grilled Hamburgers and Hot dogs for supper!!! We enjoyed visiting with some of the other parents we have got to know here!!! We visited with Karrie and her little girl Katie that we have been sharing a room with all this past week for Antibodies. And Diane from Boston, with her little girls Sophia, and Olivia. Sophia was in transplant at the same time as Carl, only in Boston. Diane and I kept in contact the whole time, and have met since here in MSKCC. Sydney enjoyed playing with the little girls, they are So darling!!!

Today we are off to Rockfellar Center, and Central Park. Bryan wants to stop at the Plaza Hotel (Where Home Alone was filmed) and take some pictures!!! Tom and Sydney will be flying back home today, so they will need to be back by 3:30 to get ready for their shuttle. We have had a very nice weekend, and it has gone by so quickly arlready:( It will be good to have Bryan stay with Carl & I for the rest of our time here!!!! I think Bryan is really Enjoying being here:)

We hope your weekend has been a nice one too!!!! Greetings to all of the Robinson's in Morton & Franklin!!! We miss Sam, but are sure he is having a Great time, and we know he will get lots of candy with Sarah & Katherine today at the Catfish Days Parade:) Somebody Mooch him up for me Please:)

Give thanks in all circumstances, for this is God's
will for you in Christ Jesus.
1 Thessalonians 5:18

Love & Prayers

Kelly & Tom
Bryan & Sydney
& Carl:)


Friday, July 25, 2003 1:06 PM CDT

Hello and Happy Friday!!!!!

Happy I am at the Moment, Thanks to all for your Powerful Prayers!!!! Angela signed Carl's guestbook with a note that Christi's Tumor was SUCESSFULLY removed!!!!! God Bless Dr. LaQuaglia, our Wonderful Surgeon here at MSKCC!!! This Famous Dr. has his hands blessed every morning before he begins surgery for the day!!! Thanks Angela for letting us know about Christi, I have been thinking about her all day, and I know alot of others have been too!!!! We are all very HAPPY for the Thomas Team!!!!!

Carl and I are waiting for Tom, Bryan & Sydney to arrive!!! I believe they should be arriving here any minute!!! Carl is napping after his last day of Antibody treatment for the week. Yea!!!!!! He did well again today, but has really been a bossy pants, and very cranky. He pitched a fit when we got back to our room. I can't get to upset with him, as I know it is from the Narcotics he is getting during treatments.

We are signed up to go to the Mets game tonight, three of us were on the waiting list, and there have been three cancellations, so that should bump our three up in line:) Today is Baseball day here at MSKCC!!! Most of the Medical Staff wore baseball shirts, or jerseys. Jay B. gave Carl an Oriels t-shirt from their hometown!!! So Carl wore it today and looks So cute in none other than "ORANGE" :):):)

Thanks Everyone for your Prayers, and for keeping all of our Friends in your Thoughts and Prayers too!!!! "PRAYER IS POWERFUL" and there is "POWER IN NUMBERS" !!!!!!

I will confess, praise, and give thanks to You, for You have heard and answered me; and You have become my Salvation and Deliverer.
Psalm 118:21

God Bless

Kelly & Tom (They Just Arrived!!!!!!!!)

Bryan & Sydney

& Carl:)


Thursday, July 24, 2003 11:29 AM CDT

Hello Everybody!!!

I am Happy to report that Carl is feeling much better:)

He woke up early with me this morning, and was very cheerful, and even Smiley:) The Nurses were also glad to see Carl Smiling and Goofing around again:) Dr. K. did not see Carl today, but I know he will be very Pleased to see Carl back to his Mischievous ways:)

The treatment went ok again today. When we were done and getting unhooked, Carl announced that he wanted to go shopping at the "Food Emporium" (They have little Carl sized carts for kids to push) So we did. We ended up not buying anything though, because Carl got mad at me (he thought that he could take that little cart home with him) He abandoned the cart in the middle of the isle, and marched off saying "Well I am going then!!!" It was just a hoot, I laughed at him, I couldn't help myself:) He reminded me of Tom just then:) Just kidding Tomma:):):) Actually it was the Narcotics still effecting Carl's mood:)

The House trip was a nice thought, but will not be happening:( The sign up was at 3:00, Carl and I did go down about 2:00 to wait in line to sign up. Come to find out about 2:55 that everyone that was already there had signed there room no.s to a list, and they were first to be called up to reserve tickets??? I was not aware that this was a sign up for a sign up??? There is limited bus space for the trip, so there are about 45 people on the waiting list (we are last on the list) just in case of cancellations above us?? I didn't think this sign up system was exactly fair, but not much in life is fair I guess.

We will probably take Bryan to the Statue of Liberty, (Carl's favorite spot) and maybe a couple of other sites for the weekend. There is always loads of things to do, and I believe Sunday there is a Street fair going on down 3rd Ave. one of my favorite things to do!!!

Please keep Christi Thomas in your Prayers today, she is having surgery today to remove her tumor. I spoke with Angela about noon, and Christi had not been taken in yet, but was next in line for surgery. She said that Christi's tumor has grown, the reason for the surgery being scheduled so quickly. Angela said that the Surgery would take about 8 hours. The tumor is not in a very easy area, it is around her heart. Our Prayers go out to Christi today, and her family that will be nervously waiting for this to be done and Christi to be safely in recovery!!! God Bless the Thomas Team!!!!!

Thanks Everyone for keeping Carl in your Prayers, he is doing so much better, I feel confident that our Prayers are being answered!!!! God Bless You All!!!!!

This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. And if we know that he hears us-whatever we ask-we know that we have what we asked of him.
1 John 5:14-15

Love & Prayers

Kelly & Carl:)


Wednesday, July 23, 2003 12:17 AM CDT

Good Afternoon Everyone on this Wednesday!!!

Day three of treatment is done, and Carl is back in bed (with his new quilt) resting:) Today and yesterdays treatments were as good as they can be, considering what is all involved. Today Carl's blood presure was low when we were done, so he stayed an extra hour to get more fulids. Then they questioned if we were getting false readings from the cuff he was using? All is ok though, and he even wanted to go to the Giftshop after:) He picked out a little Sponge Bob squiggly thing, (you know those water filled tubes that you can't hang onto, they flip out of your hand, and flop on the ground) Well he droped it a dozen times on the way back to the "Donald House"

Today I would say has been a better day overall for Carl. He still has not completly recovered from whatever he had going on last week. He has wanted to sleep more than he ever has, and he has eaten about nothing, Thank Goodness he still has his G-tube intact for night feedings. Actually I hooked him up early yesterday, and got 6 cans in!!! Carl's weight is up to 35 pounds, but not from his eating, it is due to his lack of excercise, and tube feeds. I asked Dr. Kushner about starting Carl on Megase, a mild steroid that stimulates the appetite. He thought that sounded like a good idea. Alot of the kids here are using this for weight gain, and it seems to help many of them. Dr. Kushner does not seem concerned about Carl not feeling well. He said today that we just wore him out at our Relay, we had him running too many laps:) I do see some improvement today, and I Pray that he is better each day!!!

Sydney is staying with Auntie Jill this week, and is helping Kiri at their "Isanti County Fair" Kiri is also showing chickens, so she will be able to help and experience just how this is done!!!! I have not talked to her yet this week, so I know she is busy and having a Great time!!!! Thanks Jill for having Syd stay with you this week, I know she is LOVING it!!!!! I did talk to Sam last night, and he was very Excited to tell me that he can NOW go under water in the pool!!! I am So glad he has been able to go to S.A.C. this summer, I really think it has been the Best Experience for him, and he has gained So much confidence he will benefit from when starting Kindergarden this fall!!!!! Thanks to Holly, & Mary & all of the Excellent Staff at S.A.C. you are all Fantastic!!!!!

On Friday Tom, Sydney and Bryan will be coming to join us here in NY!!! Tom & Syd will stay until Sunday, then Bryan will be staying with Carl and I until August 7th when we return home again!!! Sam is staying with Auntie Janet, and then going to Uncle Johnnys & Auntie Sheilas for some of the "Catfish Day's" events!!! Sarah & Katherine have a new baby Beagle Puppy, so I'm sure Sam will enjoy his weekend with all of the activity, and that warm, cuddly puppy:) While I was at the clinic this morning I found out from Virginia and her son Jay, that the House here is having an Outting on Saturday!!! They are taking a group to 6 Flags in New Jersey!!! The trip includes transportation, a lunch, admission to the park, and we are able to be first in line on the rides!!!! How fun does that sound!!!!! I am very Excited, and I know the kids will be too!!!! The sign up is at 3:00 today, but Virginia advised us to be down in the lobby about 2:00 as the line will start forming to sign up, and there is limited space for the outting. So hopefully we will get in on this trip!!! Every time the House has had an Outting, it has been when we were either gone, or when Carl was not feeling well, or when we needed to keep Carl Isolated before Transplant:( So I am keeping my fingers crossed that this trip will work out!!!! Please Say some extra Prayers for Carl, that he feels well enough to go, by Saturday!!!

Please Pray for all of the children having Antibody treatments this week, Jay, Josh, Katie, Bryce, Daniel, and all of the other children here at MSKCC, Also little Harrison that is doing a new treatment.

Thank You for all of your Love and Support, we stay strong by your steady Prayers!!!!

I have been found by those who did not seek me; I have shown Myself to those who did not...ask for me.
Romans 10:20

Enjoy Your Day!!!!

Love & Smiles

Kelly & Carl


Monday, July 21, 2003 11:33 AM CDT

Hello from the NY "Donald House"

Room no. 1107
Phone no. 212-639-0117

We are back in New York for almost three weeks. Carl will do his third cycle of Antibodies for the first two weeks, then retest/recan with Bone Marrow aspirates, and an MIBG Scan, the third week. We got in very late last night, about 10:00PM we finally arrived at the "Donald House about 12:45 Yikes!!

Our flight went very well, we met a real "Angel" in the MSP airport, and then were Blessed to be seated right next to her on the plane:) Her name is Eileen, and she lives in New Jersey:) She helped me So much with Carl, she entertained him with the Sky Mall book for quite awhile, they played with his flip up/tray table:) And Eileen sang Carl the song "Take Me Out to the Ballgame"!!!! She also found him a pillow and blanket, when he wanted to take a nap:) What a Dear person, she even helped us get off the plane with our carry-on's. I do believe that God puts people in the right places at the very right times:)

We got to the Clinic early, and for some strange stroke of luck, were done and out the door by 12:00 noon!!!! This is very rare on a First of the Cycle Monday!!! Carl is still not quite up to par from last weeks crud. He is just not his active, busy, energetic self:( The first day of Antibodies went very good considering all!!! He did have pain, but he worked through it very well. His heartrate did not skyrocket as it has in the past, but was very stable. It is always comforting to see some familiar faces at the clinic here, and at the "Donald House" There are always so many new faces as well, and that is very heartbreaking. I wonder if there is more and more NB being diagnosed, or more and more people finding out about MSKCC?

Our weekend was very nice!!!! We enjoyed the "Relay For Life" and were So Happy to have Eric Fischer, and his Mom Tracy, and his brothers Mark, Ryan & Alex join us!!!!! They came from so far to be there with us, I still can't believe they did that!!! We enjoyed having them here:) I think Eric wondered if Carl recognized him with hair?? Tom said that he didn't even Recognize Eric, he looks So Good, and Healthy with his new wavey/curly head of hair!!!!! I am sure Carl remembered the Fischers:) I think we will have to meet them in Rochester some time and take the kids to the Hawthorne Water Park:) They would really have a ball together!!! Those little Fischer boys are So cute, we got such a kick out of them, they are So funny:)

I felt a little disappointed myself with the Relay, only because Carl was not feeling so well:( I had expectations of him enjoying himself more. As for the Relay itself, it was a Huge Success for our "Carl's Commandos" Team!!!! Our contribution to the "Relay for Life" for the (American Cancer Society) was over $7000.00!!!!! Our team took third place in dollar amount raised!!!! But took "First Place" for Camp Site Design!!!!!! YEA!!!! We did have a Great time putting our ideas to work and making our "Fort Remission~ Home of Carl's Commandos" Camp Site!!!! Lots of Fun:) Look out next year, it will be even bigger and better!!!! About Next year.... Carl has been chosen to be "Honorary Chairperson" for the 2004 Relay For Life!!!!! How Cute!!!!

Thanks to all of you that purchased Luinaries!!!! We counted about 75 for Carl, that is Amazing!!!! Thanks to everyone that contributed with donations, and helped us in many ways to make this year a Huge Success!!!!! It was very fun to see so many people out there, and visit with many of you that came up to us to Greet Carl, and wish us all well!!!! Thank you Redwood Area Hospital Cancer Care Center, and Mary A. who presented Carl with a Beautiful Quilt from your "Quilts of Caring Project" He did use the Quilt later that night to snuggle up with!!!! And we brought his Quilt with us here to NY:) Carl Loves it!!!, he had it with him today for treatment, and is covering up with it right now as he is napping!!!! God Bless all of you for Sharing so much Love!!!!!

Thanks Everyone for keeping us in your Thoughts and Prayers, Please remember all of the children everywhere that are also battling Cancer, that a cure may soon be found!!!!!

For Thy Lovingkindness is before my eyes, and I have walked in Thy truth.
Psalm 26:3

Love & Prayers

Kelly & Carl


Thursday, July 17, 2003 7:09 AM CDT

Good Morning to All!!!!!

What a Bright and Beautiful Morning:)

The kids are still sleeping, I just got back from the barn with Tom. Several times a day, the calfs need to be walked over to their water tank for a drink, and this morning Tom wanted me to see how well the calfs are doing!!! I think he is so proud of Syd's calf this year, after last years attempt of taming a wild one:)

Tom was out at Gilfillin last night with some of the "Commandos" getting our Campsites started!!!!! He came home with Fantastic News!!!! "Carl's Commandos" has already turned in $5000.00 and we will be able to direct our donation this year, to (Childhood Cancer Research)!!!!!!! Way To Go Commando's, that is just music to my ears!!! I am So thrilled that we can see this money go for the benefit of many children along with Carl, that are fighting this battle, and so desperately needing a cure!!!!!

I have made up some flyers to hand out at the Relay, to ask folks to Please sign the petition for the "Childhood Cancer Awareness" Postage stamp Approval. I was out on the Petition website last night, and the numbers are growing!!! It has increase about 500 in just a day!!!! Our goal is to get 10,000 names, and I know it can be done!!! If you already have not signed this very important Petition please go to the link:

www.thepetitionsite.com/takeaction/928701473

The approval of this stamp would mean more dollars going towards "Childhood Cancer Research" !!!!! Please join us and sign the Petition for the Stamp approval, and pass this website on to all of your family and friends to do the same!!!!! Thanks Everybody!!!

The Relay For Life Edition is Out!!!!!!!! Tom brought home this edition last night, that Auntie Janet gave to him!!! It is worth reading, and definately worth keeping!!!!! Jackie Lueck did a Very Nice Job with this Tab, and it includes several pictures of Carl, one being my favorite, (Grandma Phyllis, with Carl at the 2001 Relay) It still amazes me how last year we chose "Lighting the way for a cure" When we were in New York, and visited the Statue of Liberty, The first thing I thought when looking up at her was, (Oh My God, that Statue/prop we had for our team last year looked So realistic) It game me the chills. I am convinced more than ever, that Carl is a "Reason" for a Very big plan here, and we are all a part of this!!!!!

I think our whole team is fired up more than ever!!! We are all So excited for Friday!!!!! I do know one thing, I will have my camera loaded and plenty of film this year. Last year I must not have taken any pictures, as the only one I could find is the one with Jacquie and Carl by the big Dragon guy:) I am very Happy to have that one Picture!!!

Carl was still feeling a little yucky yesterday, he took a couple hour nap in the afternoon, which I do think he needed. We pray that he is feeling much better today, and will be restored to his full strong, busy, energetic, healthy little self for tomorrow's Relay!!!!! I have purchased about three different bug spray/lotion 's to hopefuly keep Carl's little bald head bite free, although he will be wearing his Beret:)

I think we will be heading out to Gilfillan in the afternoon, and help with any unfinished work out there!!! For Saturday, we are gathering here at the farm after everyone has had a chance to recouperate with a nap!!! We will have a bon-fire and I'm sure food will be involved!!!

Have A Great Day Everyone!!!! Thanks for checking in on us, and for keeping Carl and our family in your Prayers!!!

Please remember all of the other children fighting Cancer, Pray that God will give those wonderful Doctors working on this day and night, the skill and knowledge to find a cure!!

I opened my devotional book, and this is the page that it fell open to:

"For we walk by faith, not by sight.
Yes, we do have confidence."
-2Corinthians 5:7-8

God Bless+

Kelly & Tom
Bryan & Sydney
Sam & Carl:)


Tuesday, July 15, 2003 12:53 AM CDT

Good Evening everyone!!!!!

Carl, Sydney and I are home!!!!!

Thank you for checking in on us, and for all of your Powerful Prayers!!!!!

I know they were heard, because when we got in the exam room, Carl's Temperature was "Normal" I was sure he still had a fever. We first saw Linda E. the Nurse Practitioner, she announced the wonderful news "Carl's CT scans (Chest, Abdominal, and Pelvis) were Negative, and showed No change since the last scans in April!!!!! We visited about Carl's symptoms, and she examined him. She thought that he looked Great!!! Dr. Arndt saw Carl next, and also felt that Carl seemed very good as he was busy running around the room, and being quite naughty:) They believe that it is some sort of virus that he has, or maybe is already getting over since he is much better than yesterday!!! The test for West Nile is sent to the State, and after consulting with an Infectious disease Dr. they only test for this if a patient is needing to be admitted or showing signs of "Menengitis" So we did not draw blood to check for this. If he had/has WNV it should clear up on its own. They feel very confident that a virus is the cause for all of Carl's symptoms!!! We will be keeping our schedule from here, to return to NY for Round 3 of Antibodies on Monday July 21st. Unless something else occurs before that. After this 3rd round of Antibodies, Carl is scheduled to have Bone Marrow Aspirates done, and an MIBG scan in NY. When we return home, we will be heading back to Rochester on July 11th and 12th to compelete Carl's Post Transplant workup, (Head Ct., PET Scan, Heart Eccho, Hearing Screening, blood work, and Urine testing) We will have a full picture of Carl's situation after he has completed all of this workup. But for now, we are Happy to know that there is no reason to believe
any Cancer has come back!!!

Thanks Again for all of your Support!!!!!

Today when we got home, we learned about another little Cancer fighter that had lost her battle, and has earned her Angel Wings.

Her name is Kaitlyn Evens. We had been in St. Mary's Hospital many times together, when Carl was going through Chemo.

We are very Saddened, and at this moment, can't even imagine what her parents and family must be feeling. Our problems seem very petty to us right now.

If you wish, you may visit Kaitlyn's website, and leave her family a message of your Love & support, you are all so good at that!!!!

Here it is if you feel led: www.caringbridge.org/ia/kaitlyn

God Bless you all

Kelly & Tom
Bryan, Sydney, Sam & Carl

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Good Afternoon from Rochester:)

We are trying to waste some time before Carl is seen up on 12 East by Dr. Arndt, so here we are up on Gonda 6 South in the computer area!!!

Thanks everyone for all of your encouraging notes and Positive words, and Hopeful Loving Thoughts!!!!!

Carl had his blood work done this morning, our appt was at 7:30am in the lab area at St. Marys. then we were scheduled for CT's at 8:00am, well we waited until 8:30 for the lab person who could access Carl's port to show up:(

The labs were drawn, and off to CT's we went. They went very well, no sedation, and Carl layed there like a little doll, almost asleep for the procedure:)

We left the Hosp, and stopped by the "Donald House" It was amazing to see the construction in progress on the new wing of the building!!! It will be very nice when completed!! Maybe next time (after Novemeber)when we need to stay in Rochester, we will have a room available. It was fun to see Helen, & Patty!!! We remembered all our PoP Tabs this time and Carl enjoyed dumping them in the Pop tab house in the lobby!!! I think we filled it up from a quarter full to almost half full!!! Helen couldn't believe how tall Carl has grown. (Helen is the sweet lady that lives at the Donald House, and like a Grandma to everyone)

We drove around trying to decide where to stop for lunch, we narrowed it down to Applebees or Bakers Square!!! As we were within a block from the two restaurants, Carl piped up from the back seat "Lets go to the Mall" A man after my own Heart:) So we settled on Applebees in the Mall!!!!

So here we are, at the clinic, waiting for our 1:45 appt.
We may show up earlier, just in case we could get in sooner. I am feeling So much better about Carl. I actually wonder if he doesn't have (West Nile Virus) he has been Soo bitten up this past week by the droves of Mosquitos we have had show up since last weeks big rainfalls, over the weekend, his little bald head was adorned with huge welts, every couple of inches:( I did speak to Dr. Arndt this morning and asked her about Carl being tested for this. She needed to check and see how that test needed to be done, so we left Carl's port accessed in case we need to go to the lab again for more blood draws.

Carl is feeling fairly well, he did have a temp still this morning when he woke up, and his little head feels warm now. He is walking around alot, he even insisted on pushing his chair almost all of the way up here. He has not complained of the tummy aches, or leg pains today. When I ask him if his legs hurt, he looks at me with those big eyes and nods his head yes, but this is the same look I have seen many times when he just wants attention:) and tries any tactic, like when he says "Mom...I want you to hold me all day" What a little actor:) Auntie Jill knows what I am talking about LOL.

Well I think we are going to head up to 12E and check in. I will update more later. Please keep the Prayers Coming, we feel each and every one of them!!!!

love & Prayers

Kelly


Sunday, July 13, 2003 9:43 PM CDT

Hello this Monday!!!

I wanted to do an update on Carl. This morning he slept until 11:00am When he did get up he had a 99. temp. and has started to complain about tummy pain and leg pains:( I emailed to Dr. Kushner in NY to ask about the Accutane side effects, and to see if he felt Carl should be looked at before Monday when we are due back in N.Y. He emailed back and felt that Carl should be seen by our Local Oncologist.

I phoned Mayo in Rochester, and we will be taking Carl in tomorrow morning to have blood work done, and CT scans. His appt.s start at 7:30am so we will be leaving pretty early in the morning. I think Syd will be coming with Carl and I. I talked to Dr. Arndt on the phone, and she said they would try to get everything done in a day, but to plan on staying for a couple of days in case we can't get everything in.

We will meet with Dr. Arndt in the afternoon tomorrow so that she may examine Carl, and to discuss any findings.

I have only talked to Tom on the phone, but I am sure he is feeling as horrible at work today, as I am at home. We are both beating ourselves up for not keeping our original schedule of Carl starting his Antibodies this week. We would have been in NY today if we had stayed on track.

We are not jumping to conclusions, this could turn out to be nothing and we Pray that it does!!! It is just that we have read about, heard about, and seen first hand, how quickly and unexpectedly a relapse can occur when least expected, without warning.

Please think about Carl today, tonight and tomorrow, and Pray VERY hard that he comes back home from Rochester still showing "NO EVIDENCE OF DISEASE"

Thanks to everyone!!! We Love You All!!!

I just received an email from Sara Hammer about a Postage Stamp for Childhood Cancer Awareness!!! And being the Postal Worker that I am, I did join in this crusade!!!! They are trying to get a Postage stamp passed for Childhood Cancer Awareness, I think it is similar to the Breast Cancer Stamp where it costs more than 37 cents and the proceeds go to Research!!! In this case the proceeds would be directed to "Pediatric Cancer Reasearch" This a a very important mission, as alot of us NB parents are trying to take action in various ways to get more Gov. funding going to Peds Research, as of now, only 2 or 3 percent annually is directed for this cause, and at this rate, there will never be a cure for Childhood Cancer. Please go to the following link below, and sign a petition that is (For This Stamp) the goal is 10,000 names, I think it is at 4000 right now. Please join us in this mission to get this very important stamp approved!!!!

go to link:
www.thepetitionsite.com/takeaction/928701473


God Bless

Kelly

<<<<<<<<<<<<<<<<<<<<<<<<<>>>>>>>>>>>>>>>

Good Evening Everyone!!!!

We hope you all enjoyed your weekend!!!

We have been very busy with lots of activity here this weekend. Sydney is trying to take a Beef Steer Calf to the county fair for 4H this year. Tom & Syd tied her calf up in the barn on Saturday. The idea is to get it used to being tied, and to allow her to work with it, and have the calf get used to handling. So far it is going good!!! Sydney is also taking some chickens to the fair this year. They are Black Wyndot Bantams. She is already comfortable handling them, and is good at doing her chicken chores daily!!! It is kind of fun to hear the Rooster crowing every morning. We have not had chickens around the farm for a couple of years now, and forgot about the daily wake up call.

Today we (Some of the Commando team) met out at Uncle Dennys to work on our props for the campsite at the Relay For Life this next Friday. We are making our campsite "Fort Remission ~ Home of Carl's Commandos" It will be very spectacular when we get all set up, and fun to see all of our family and friends again at the Relay!!!! After we got done working out at Uncle Denny's we met in Morton for supper. We grilled Brats, hamburgers, and hotdogs. Uncle Chuck cooked onion rings and homemade french fries for everyone!!! The kids played softball outside and the big kids joined in for fun too!!!

Carl has been a little cranky and whiney the past couple of days. I'm not exactly sure what is going on, but I do believe that he is not feeling good. He has been clingy, and wants to be held. This morning he woke up with a temp. of 99. under his arm? I rechecked his temp a little later and it was normal. Carl completed his first round of Accutane last Sunday (acne medicine that also kills cancer cells). I know there are side effects from the Accutane, but I don't think a week after he is done taking the Meds he should be starting symptoms? I will keep a close watch on Carl and see how he is feeling tomorrow.

Please remember in Prayer~

All our friends in NY and elsewhere, also fighting Cancer. Please pray for a Cure so that children do not have to experience such pain and suffering, as they are so innocent and Precious, they don't deserve what they have had to endure to survive.

May your burdens be lighter
and your star shine even brighter
-Earl Graves

Love & Happiness

Kelly & Family


Thursday, July 10, 2003 2:36 PM CDT

Hi Everyone this Thursday!!!!!

I added to the photo section the "only" picture I could find of Carl from last years Relay:) I think what had happend was that it got dark so quickly, (or so it seemed) and I never took any pictures:( I am very glad Jacquie (Robinson) Retzlaff had this Picture taken with Carl!!!! Thank You Jacquie for doing that!!! I sent this one to Jackie Leuck at the Gazette to use for her story!!! Thanks Jill for your feedback!!! Did anyone else find any photos? If so, you may still email any "Relay for Life info", or pics to Jackie L. at:

gaznews3@redred.com

Thanks everyone for all of your help!!!!!

Carl received a package in the mail today from Jackie Cleven!!! Thank You Jackie for the beautiful shirt, and the Bob the Builder book, and Curious George book!!! What a sweetie your are!!! Carl does Love Orange and he will wear that shirt before long:)

Hey, I have talked about "three" different Jackie's in this journal already!!! How about that:)

I have been working all week, so it has been really hectic around here. Sydney has been a HUGE help around the house!!! These kids are so Great, I really appreciate my time at home with them, especially after working a few days, I really miss them!!! It was So cute yesterday, Sam came up to me in the kitchen as I was making supper. He said to me "Mom that was a good sandwich you made for me!!"
(I pack him a lunch everyday for S.A.C.) :):):) That little comment, made my day!!! And it made my day again today:)
It is funny how just the littlest things mean so much!!!

Please Remember in Prayer ~

Shannon Fuhrmann, Shannon is a friend of Carl's Cousin Jenny Robinson:) Shannon left us a beautiful Prayer on the guestbook yesterday!!! Thank You Shannon!!! Shannon is having some dificulties with the disease Parvo, and is also showing signs of Lupus. Please keep Shannon in your Prayers for Improved health, and healing with these terrible problems.

Please keep Eric Fischer's grandma Judie in your Prayers, Judie is in Rochester right now with Eric & Tracy. She is meeting with Dr.s and will be discussing treatments, as she is battling a cancer relapse.

Please Pray for all those fighting Cancer, and their families. For all of those in Remission, that they will never have to endure suffering again. And for all of the Angels who have lost their battle with Cancer, and all of their families that miss them so much.

Wishes to you all for a Great Evening!!!

If we have no peace, it is because we have forgotten
that we belong to each other.
-Mother Teresa

God Bless

Kelly


Tuesday, July 8, 2003 9:56 PM CDT

I Need your help Robinson's!!!!!

Today Jackie from the Gazette phoned, and is doing a story on Carl for the "Relay for life" edition in the Gazette. Her deadline is Friday. If anyone has any info that they would like to share, or feel would be beneficial to include, about our teams history, or about our Mission, please seed your thoughts to Jackie!!! Also, If anyone has any pictures of Carl from last year, we could use them!!! I will be digging through my pictures tonight, and I have already emailed her some of our campsite from last year, and some of severeal of us next to Lady Liberty that Uncle Clair had emailed us after last years Relay. If you find any and could email them to Jackie, that would be great!!!! I also have some of the "Robinson's Ranglers" of Carl- cute pics with his little boots on and cowboy hat:) Remember those!!! I will send her a couple of those too. She is also interested to know how we all got started on doing the realy, I told her that it got started because of Grandma, I cannot remember exactly what year???? Anyone???? But if you all can refresh my memory I would appreciate it!!! Do feel free to leave notes in the guest book, Jackie is looking at the website too. Otherwise here is her email address: gaznews3@redred.com

Thanks for your help everyone!!!!!!!

Will catch up with you later:)

I found a couple pics from 1999, then some from 2000, & 2001 but no team pictures of any years, and I can't find any pictures of Carl from last year:( If anyone can check, we could use a couple from last year 2002!!!!

I added a collage on the photo page of a few of the pics I am sending to Jackie:) It has been fun going through all of these memories!!! Boy have the kids grown!!!

Thanks Everyone!!!

Love

Kelly
<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<>>>>>>>>>>>>>>>>>>>>>
New Pictures added!!! Carl looks like he is sporting a black eye, but it is just a bug bite:( It looks worse than it is. Does anyone have their pictures back from the Hog Roast yet?? I know this is kind of early, but was wondering if anyone took one of the Hay Ride? If so, I would Love to have a copy of it!!! We had a Hay Ride on Saturday, Uncle Denny drove the tractor, and pulled TWO Hay Racks behind, both filled to capacity!!! It was Great!!!

I talked to Tracy Fischer tonight, (Eric's Mom) The Fischers are planning on attending our Relay for Life Cancer Walk on Friday July 18th!!! When I read Tracy's note on Carl's guestbook, I got very choked up. The thought of Eric with his little buddy Carl making the Survivor Lap together, is very emotional for me. Last year when Carl was diagnosed with cancer, we had the honor of meeting Eric and his family at St.Mary's Hospital in Rochester Mn. Eric was inpatient at the time, doing one of his rounds of chemo. We have kept in contact with the Fischer's ever since. Carl and Eric spent many Inpatient stays together. They looked forward to seeing each other when checking into 3rd floor for many Hospital stays. Sometimes Carl was neutropenic (low counts with fever) and very sick following his last round of chemo. But a familiar smile on the face of a fellow cancer buddy, always made a little guys day much brighter!!! It will truly be, and Awesome Survivors lap!!!

If anyone would be interested in purchasing luminaries for Carl, Eric, or any of our many friends we have met in this journey, please contact us by email or phone, or you may talk to Carl's Auntie, Janet Welter (507-249-3204) who is our team captain!!! Luminaries are $10.00 a bag, and may be for a Cancer "Survivor" in Honnor of, Or in Memory of a Loved one that has lost his battle with Cancer. Also we do have Carl's buttons available. If anyone is interested, email me your address, so that I can send you one. We are asking $2.00 for each button, and all proceeds go to the "Carl's Commando's" for the Relay for life, going to the A.C.S.

Thank You for all of your notes, each time I go to the guestbook, and read a note from someone I have never met, that has been following Carl's progress gives me the greatest feeling!!!!! To know that all of you out there are concerned, and care so much to keep checking in on Carl, and to continue to Pray for Carl and our family gives us the fuel to keep pushing on, and fighting with all we got!!! You give us the encouragement and Hope to never give up, you are all messengers from God!!! Thank You So Much for keeping us Strong!!!!!

Lend me your hope for awhile. A time will come when I will heal and lend my renewed hope to others.
-Eloise Cole

Thank you Lisa Simon for the book, "Stronger than Cancer", I have enjoyed it very much, and Love the little messages that it offers!!!

Love & Prayers

Kelly


Sunday, July 6, 2003 9:55 PM CDT

Good Evening this Sunday!!!!!

Thank you everyone for remembering my BIG 40th Birthday yesterday!!! I enjoyed the day very much, and will never forget all of the many wishes I received!!!!! Yes my sister Holly put a cute little picture of me in the paper on Thursday:) She must have forgot that she also had a school picture taken that same year, with an identical looking haircut... LOL... we went to the same barber:) Thanks Holly!!! We all enjoyed it, and I never was above a payback, even if you were paying me back from last year HEEHEEHEEH ;>) Good Times:)

I hope everyone had a Great Holiday Weekend!!! We enjoyed our day at the Morton Park!!! The kids were Sooo tired after the fireworks. Carl's Commando's raised over $300.00 from our games, tatoos, buttons, drawing!!! All proceeds to the A.C.S. for the Redwood County Relay For Life. Thank You Chris & Randy Johnson for donating the dolls to the drawing!!! The two winners, were very excited to have won!!!

The Hog Roast went very well too!!! We spent time with lots of Great Company!!! Thanks to everyone for coming, and bringing your contributions to our meal!!! Everything was very tasty, and as always we ate too much!!! The Fischer family, (Carl's buddy Eric) was not able to make it. Eric's little brother had a T-ball award ceremony that the family did not want to miss, and I can't blame them. Eric has been wanting to visit Carl very badly, so I am sure we will arrange getting together with them sometime soon!!!!!

We were all a little tired today, as we stayed up quite late visiting around the bon-fire. Carl's cousin Matt, and Bryan took turns reciting lines from Adam Sandler movies, and as you can well imagine, entertaining all of us:) The little boys were tucked away in bed by then:) Today Carl asked me "Mom...When are we going camping agian?" LOL He must have thought the Party was camping:) Tom and I have reminisced many times about last years Hog Roast. We remember Carl walking around, through all of the people visiting, and enjoying themselves. He walked around looking around, and up at everybody, nobody claiming him:) Once in awhile he would run over to me and get mooched up, and then off he would go again:) Little did we know, or anyone else at the time that he was walking around with Stage 4 Cancer (Neuroblastoma)

This year we Pray that Carl is still "Cancer Free" and will never again have to go through what he has, this past year. We feel very Blessed that he is as healthy as he is!!! Watching him this year, walking around through all of the company, much the same (nobody claiming him) as he went on about his business:) This year, we had to laugh watching him running around with the little group of kids playing (Ghost in the graveyard) as he was running, his little arms were bent at the elbows, swinging to the sides with each step, going as fast as his little feet, as if to propell him along:) Life sure has changed over the past year, and watching our children play has taken on a new meaning, that will never be taken for granted again. We are Truly, Truly Blessed to all be together, and have Carl with us today. The treasure of watching him run and play, are a Gift from God!!!!

Thanks to everyone for all of your help on the Hog Roast, your help with house cleaning, and hauling tables, the cooking, and carving, and everything all of you did to help us get ready for the day!!! Thanks to Matt for another Beautiful Fireworks Show!!!! I do believe that you outdid yourself this year!!! It was Great, we all enjoyed it!!!! THANKS EVERYONE WE LOVE YOU ALL!!!!!!

Wishes for a Great Monday!!!!!

Friends feed each other's spirits,
dreams and hopes; they feed each other
with the things a soul needs to live.
-Glen Harrington-Hall

Love & Happiness

Kelly & Tom
& Family


Thursday, July 3, 2003 10:33 PM CDT

Hello and Good Evening!!!!!

HAPPY BIRTHDAY TO Blake Weilage on July 4th!!!! Blake turns 10 this year, one month after Sydney:) What a Special Day to Celebrate your Birthday!!!! The Whole Town of Morton comes to your Party every year at the Morton Park!!! We Love you and hope you have a Fun Filled Day!!!!

About a week ago, we received a couple of phone calls from the Wonderful people at Jackpot Junction. We were approached about Carl being the recipient of the proceeds from their Employee Golf Tournament, they would like to send Carl and our family on an all expense paid trip to Disney World in Sunny Florida:) This is the first year that Jackpot has hosted a Golf Tournament with it being a fund raiser, of this type. Many vendors sponsored holes,
this is how the money was raised. The Angel Tournament, was combined with their employee Golf Tournament, to turn this into a first annual Event!!!!! Carl, being a little local guy here, was the child chosen to be the recipient!!!

We were invited to the club house, and to a Wonderful supper before Carl was Presented with his surprise!!! I'm not sure Carl understood exactly what he was given, but we are confident he will fully enjoy this experience when the time comes:) We are So Humbled and Appreciative for such an Overwhelming expression of Kindness!!! Thank You everyone who took part in the Golf Tournament today!!! A Special Thank you to all of the Jackpot employees that put So much time and effort into planning, and putting on such an Awsome event!!! God Bless you all!!!

Tomorrow we will spend most of the day in the Morton Park for the many festivities that will be taking place!!! We are in the process of trying to get the kids in bed, as they are still up giggling and fooling around:) They are very Excited for tomorrow!!! There is something Special about a small town 4th of July Celebration. Memories for a lifetime are in the making at the Morton Park!!!!!

We look forward to seeing many of you on Saturday July 5th, for our Hog Roast!!!!! Let us know if you need directions, or have any questions. We are expecting to have loads of fun!!!!!

HAPPY FOURTH OF JULY TO EVERYONE!!!!!

You never know when you are making a memory.
-Ricki Lee Jones

God Bless+

Kelly & Tom
Bryan, Sydney
Sam & Carl:)


Tuesday, July 1, 2003 10:21 AM CDT

Good Morning this Tuesday July 1st!!!!!!

HAPPY BIRTHDAY TO ~ Katherine Robinson!!!!!! Happy 9th Birthday to You!!!!!!!! We all hope you have a very Fun Day!!!!! We Love you, and Wish you the Best Birthday Ever!!!

Another Beautiful Morning!!!!!! The sun is shining, and the birds are singing:) A little while ago, I heard some Squirrels chattering in the trees:) I will always appreciate the serenity of country life!!!

The kids are up and out playing already!!!!! We have been very busy on the farm getting ready for the weekend:) Everything just falls into place with the help of everyone toghther!!!!! We are Praying that the weather holds out and is just as Lovely as it has been the past few days!!! Also please Pray for safe travels for everyone this Holiday Weekend, there will be alot of extra traffic:(

We have felt a sense of Normalcy the past couple of weeks, and it feels SO Good!!! If it weren't for Carl's little bald head, we might even forget we have any trials at all:)
We are forever greatful, for you all keeping us close to your hearts in thought and Prayer!!!

Please keep all of our fellow friends in NY and everywhere in your Prayers as well. We have met some wonderful families that are now forced to look into other therapies to continue to fight this Horrible Cancer. These children are all so innocent, and don't deserve what they are living through every day. This past weekend the annual Neuroblastoma Conference took place in Chicago Ill. There were many guest speakers including Dr. Nai-Kong V. Cheung from NY., the Dr. that pioneered Monoclonal Antibody Therapy. Since Tom and I have been away from home so much the past few months, we decided to not attend the conference, but at the same time, wished we would have. I'm sure we will get all of the information that was on the agenda at the conference. From some of the emails that I have looked at, it sounds like there are alot of new and hopeful treatments coming down the pike. We are so blessed to be in the decade we are, dealing with this disease. Less than ten years ago, this would be almost always fatal. Neuroblastoma is being worked on 24/7 by alot of these Dr.s and we feel confident that one day, a cure will be found!!!!!

Have a Wonderful Day Everyone, and wishes for many Blessings to you all!!!!!

Doing your best at this moment puts you in the best place for the next moment.
-Oprah Winfrey

Love & Smiles:)

Kelly

& Crew


Sunday, June 29, 2003 8:55 PM CDT

Good Evening this Sunday!!!!!

We hope you all have had a very nice weekend!!!!!

Saturday and today have been just Beautiful!!! You could not have asked for two more perfect days. After we got through the rain, and storm warnings on Friday, We were Blessed with a couple of Georgous days!!!

Our friends Chris and Randy Johnson, with their daughter Jenna, and her friend Amber, came out Saturday and stayed with us until this afternoon!!! All of the kids had a ball!! They Just Love it when the Johnson's come:) We had a bon fire last night, and the kids (and some of the big kids) played Ghost in the Grave yard. When we were kids we used to call that game "Moonlight Starlight" A good time was had by all:)

Today Carl went with Dad and Uncle John to get the Pig, for the Saturday July 5th Pig Roast!!! We are all looking forward to the upcoming weekend, with the Morton 4th of July Pork Chop feed!!!! Carl's Commandos will be doing a little fund raising in the park on the 4th!!! We will be having games for the kids to play, and some other fun stuff!!! All proceeds going to the Redwood County Relay For Life, for the A.C.S. Then on the 5th we will be doing the Pig Roast here at the farm!!! Don't forget to join us for a fun filled day!!!!

Sydney is in the living room, munching on some pop corn, watching the movie "Annie" :)

The boys are crawling in the tub to scrub off the layers of dirt they have collected from a busy day of outdoor play :)

Have a Blessed Evening, and a Wonderful Day tomorrow!!!!!

There is one glory of the sun,
and another glory of the moon,
and another glory of the stars;
for star differs from star in glory.
1 corinthians 15:41

Love & Prayers

Kelly


Thursday, June 26, 2003 7:30 AM CDT

Good Morning Everybody!!!!!

HAPPY BIRTHDAY TO ~ Levi Wolter, Tim and Pattys little Levi!!!!! Best Wishes for a very Special Third Birthday!!! All our Love to your whole Family!!!!!

Today looks like a better day than the past few days. The sun is shining, and the birds are singing:) As most of you in Mn know, Buffalo Lake got hit by a tornado that touched down, on Tuesday night. Tom was in and out of Buffalo Lake yesterday with work, and was able to see some of the damage. What a very scarry thing to have happen, and not too far from home. Our Prayers go out to all the people of this town, that must pick up the pieces, and rebuild their homes, business' and church.

Freddy & Patty ~ The Package Arrived in the mail a couple of days ago!!! The kids have been playing with Carl's new toys, mostly indoors:( since the weather has been so stormy. They were very excited to open the BIG box and have Carl show them his gifts he received in NY!!!!! Thank You Again So much for all that you did for Tom and Carl this past trip to NY. Tom is still talking about all of the fun things that you did, and telling us some Great Stories he heard!!!!! He especially liked the Chinese take-out you guys got:) He keeps ranting about the BBQ Spare ribs:)

Carl has been doing Great since he got home!!! I don't think I mentioned it earlier, but Carl came home Bald again:( We believe it was from the radiation treatments he had last month. His head was one of the areas treated, and we didn't think of his hair falling out again, but it did. It was just the strangest thing, as I expected his hair to be even thicker when he got home. It almost felt like the first time he shed his hair. This time we know that it will be coming back soon, and the remainder of his treatments will not cause hair loss. And we pray that his hair will never fall out again, at least until he's 20, or 25 like the rest of the Robinson's (Sorry Uncle Johnny):)

Today we will go to the Redwood Hosp. to have Carl's blood drawn, for a sample to be sent to N.Y. for HAMA testing. A couple of weeks after each Antibody treatment, we need to have his blood checked to see if he has developed a HAMA yet. We pray that he has not, as the treatment is most effective if the child is HAMA negative for at least four cycles of treatment, after that, then having the HAMA would mean that his treatments will be six to eight weeks appart. Giving his body a chance to have the HAMA go away, before doing more cycles of Antibodies.

I emailed back and forth to Dr. Kushner a few times yesterday, and we decided on starting his next cycle on July 21st. That would give us an extra week home, and allow us to be here for the "Relay For Life" on July 18th. We will have an extra week to enjoy being home together!!! This next trip to NY will involve almost three weeks. Carl is due again for his Re-testing/Re-scanning. He will have an MIBG scan, and Bone Marrow Aspirations. They will not do them at the same time as the Antibodies, as there is some issue about being put out, and Antibodies not mixing.

Please keep all of our friends in your Prayers that are also fighting this Monster, and for all of the little children that have lost thier battle, and earned thier Angel Wings. May their families find comfort and peace.

God Bless You All!!!

You are my hiding place from every storm of life; you even keep me from getting into trouble! You surround me with songs of victory.
Psalm 32:7

Love & Prayers

Kelly


Tuesday, June 24, 2003 12:38 AM CDT

HAPPY BIRTHDAY TO ~ Sweet Little Chris Johnson today June 25th!!!!! We hope you have a Great Day Chris!!!! Can you believe it??? Your _0th Birthday!!!!! It seems like yesterday we were only 20:) I know Randy and you will find a fun way to Celebrate!!!!! We Love you all and can't wait to see you's!!!!!
<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
Good Afternoon Everyone!!!!!

It is Sooo Quiet here today, I don't know what to do:) Bryan is in Summer School. Sydney is a Valley Fair trip for her "Conflict Management" group in school. Sam is at S.A.C. for T-BALL and then Swimming:) So it is just the CarCar, and me for the afternoon:) I think he notices the quiet state too, he just asked me "Mom, what are we going to do today???" :):):)

Carl is enjoying being back home!!! It feels like the Summer has officially begun:) The kids want to be outside most of the time, and don't stop running from sun up, til sundown:) Uncle Chuck brought out a "Horse" tire swing last night:) It is just adorable, the tire is cut into pieces and arranged to look like a Horse:) You just have to see it to believe it!!!

You are invited to the:

************************************************************
Robinson ~ Around the 4th of July HOG ROAST
************************************************************

Where- The Robinson Farm

When - Saturday July 5th

Time - Anytime you arrive!!!

Who - You!!

Why - Because we did this a couple of years ago, and had so much darn fun, we did it again last year. And why stop a good thing when you got one going!!!!!

Come anytime you like, we also have room for camping if anyone would like to camp, either by rig or tent.

Bring - A beverage of your choice, and a dish to share.

Don't forget the kids, we have lots of things for them to do!!!

We will have a Bon-Fire!!! So bring along your lawn chairs.

Plan on staying for the "FIREWORKS" Nephew Matt, AKA..."PIROTECH" (I Love You Mattie) will be entertaining us again with a beautiful show!!!

We will Supply the: Pork!!! Buns!!! POP!!! And such a Great time, you will want to attend our 4th Annual~ Around the Fourth of July Hog Roast in 2004!!!!! Hey That,s Cool!!!!

Anyway, if I forgot anything, I will get it out there later. We are looking forward to doing what we enjoy doing the most, Being at Home, and enjoying the Company of our Wonderful Family, Friends, and Neighbors!!!! It is most comforting to be around all of you, those that have been our Rock this past year!!! All of you have kept us so close in your thoughts and Prayers, and never gave up on us!!!! It is time for a LITTLE CELEBRATION!!!!!

If anyone has any questions just give us a call or email us!!! Our Address is listed below on the webpage, for anyone that has not been out to our farm before.

Have a great day!!!!!

Oh Praise the Lord, for he has listened to my pleadings! He is my strength, my shield from every danger. I trusted in him and he helped me. Joy rises in my heart until I burst out in songs of praise to him.
Psalm 28:6-7

Love and Happiness

Kelly


Sunday, June 22, 2003 4:01 PM CDT

Hello Everyone on this Sunday!!!!!

The above picture is Dad with Carl on Uncle Chucks Harley

HAPPY 12th ANNIVERSARY ~ To Uncle John & Auntie Sheila today June 22nd!!!!! Wishes for Many More Happy Years!!!!! All our Love to you both!!

HAPPY BIRTHDAY ~ To Cousin Nancy Garrett on Monday June 23rd!!! We hope you have a Great Day!!! We Love you, Billy & Ricky and Miss you all very much!!!!!

Carl, Tom & Sydney are all back home!!!!! Tom & Carl rode back home with Jill & Kiri Friday night. It was close to midnight when they made their arrival:) Bryan, Sam, Cousin Nick, and I waited outside for the Event:) We found a couple boxes of sparklers and drummed up a scheme to light them, just as they were making their way down the driveway. We wanted to give Carl a Grand Welcoming!!!! It was more exciting getting ready, and waiting for them in anticipation:) It was very windy out, so it was quite humerous trying to get these sparklers lit, but we pulled it off, and had alot of fun!!!! Tom and Auntie Jill said that they weren't sure what they were driving into:)

Our Sweetie Sydney with her Sweet Grandma Helen got here Saturday afternoon:) Sydney was filled with lots of stories about her adventure in Costa Rica, and enjoyed handing out all of the souvenirs she picked out for all of us:) We spent the rest of the evening visiting and exchanging Great stories with Grandma Helen:) Bob and Judy Landgraff stopped by to say Hello to Helen too!!!

Carl had lots of company stop by for a visit yesterday!!! Grandma Phyllis with Jill, Nick & Kiri, Uncle Chuck, Uncle Denny, Uncle John & Auntie Sheila, Cousins Sarah & Katherine. Also Dick Sindelir stopped by when he and John were done bailing:) We were hoping to have a Bon-Fire, but were not able to with the rainy weather, and strong winds:(

Grandma Helen left early this morning to drive back through to Sydney's Uncle Rich & Aunt Sis's, where she will be spending a some time before driving back to Arkansas. Sydney phoned to Iowa to make sure that Grandma made it there safely, and she had just got there right before Sydney called. Thanks Helen for driving Sydney all the way home!!! We Enjoyed your Visit, It was fun having you stay!!! We all Love You!!!!

Today the Parade went off without a Hitch!!! It down poured all morning, so we were certain that the Parade would be called off. It managed to quit raining and cleared up just in time!!! Grandma Phyllis' famous saying is "Rain before 7:00 ~ Quit before 11:00" This was very true today!!!! It was alot of FUN!!! Carl rode on Sliver and Blonde's 1922 Altman Taylor Tractor with Uncle Mark & Dad!!! Carl was such a little Doll:) After we got through the Parade route, we went and found a spot to watch the rest of the Parade, since we were the first unit. We Enjoyed watching the kids run out into the street to collect candy that was getting thrown out to us!!! Carl was just a Hoot:) He would run out into the street with a little spring in his step each time, then run back just as fast, to show us his treasures:)

We had a very full weekend, but very Enjoyable!!!! We hope you all had a nice one as well!!!

Thank you for checking in on us everyday, and for all of your Continued Love & Support!!!!

Love & Prayers

Kelly


Friday, June 20, 2003 7:27 AM CDT

Happy Friday to all!!!!!

Dedicated to Carl ~ The above Picture is of the Famous "Shrek" at Universal Studios California, with Sweet cousins Jody (left) and Melissa (right) the girls took a trip a couple of weeks ago, and made it a priority to meet Carl's Favorite Green Guy:) The girls had a very eventful vacation!!! The also got to be in the studio audience of "The Price Is Right" and one of their friends was a contestant, and won a Showcase:) Thanks for the Picture!!!

I talked to Carl last night, and he is EXCITED to be coming home today!!!!! We are all very excited here as well, to be getting them back home!!!!! Carl continues to Amaze me how Great he handles all of this stuff. He is away from home, he deals with these treatments so well, and he is aways Happy, Cheerful, and a Smiley little guy:) They will be getting home very late tonight, probably close to midnight, but I will be ready to Mooch him up anyway!!!!! I have a couple of weeks to catch up on:) Then when sister Sydney gets home tomorrow....Look out Carl, it will start all over again!!!!! She misses you SOOO much too!!!!!

Please keep all of our fellow fighters in NY, and everywhere that they may be, in your Faithful Prayers!!!! It is with all of your "POWERFUL PRAYER" that Carl is doing Soo well, and we all Stay Strong!!!!! God Bless You All!!!

The world knows very little
of its Greatest Heros.
-Don Ward

Have a Great Day!!!

Love

Kelly


Thursday, June 19, 2003 10:48 AM CDT

Good Morning this Thursday!!!!!

HAPPY BIRTHDAY TO ~ Linda Harmoning today June 19th!!!!!!! We hope you have a Great day today!!!! Enjoy it is a Beautiful Day Today!!!!! Love to you and your whole family:)

Two more treatments left this week, and the boys will be on their way home!!!!!! YEAAAA!!!!!!!

OK let me explain these pictures:)

Taken of Bryan in June of 1994 ~ He was almost 7

Bryan's PCA (Personal Care attendant) Patty, (for many years) and A GOOD friend of mine:) had her son Shawn, who was in the Green Beret's at the time, fix Bryan up with Cammo Face Paint!!!!!

Last night, I had a lightbulb, or a Brainstorm, or Brainfart go off:) Actually I think this Cammo stuff is going to my brain:) Anyway I got this wild Idea brewing about doing "Face Cammo" for "Carl's Commando's" at the Relay!!!! Carl just Loves to have his face painted, or tattoos, of any kind on his body:) Just yesterday, he had a Spider Man done on his arm at the "Donald House" Tom said he woke up out of a sound sleep, worried that his tattoo was rubbing off:)

What do you all think?????? I went ahead and ordered some "Face Cammo paint" (It wasn't too expensive) If just some want to do it, or just the kids, thats ok. Whatever you all want to do!!!!! I just thought it would be a fun, easy way to really enhance our theme!!!!!! And I know Carl would be the first in line to have his face done:)

The boys are still sleeping:) I think thats why this Brain storm went off last night, I was woke up by the guys still up talking at 3:30am Thats ok, thats what summer and being a teenager is all about:) Sam went to T-ball by means of force today. I have been having trouble getting him to go, I think that me being away from him so much, has really caused this excessive clingyness. I dropped him off with Holly this morning. Holly works at SAC (School Aged Childcare) and she brought him to SAC with her. Blake and Abbey were also going with, so he was in the company of his cousins too. At SAC, they take the children to their summer rec activities. So Sam was brought to T-Ball by a sweet little gal at SAC, and she said he did just fine!!!! They played their first game today!!! Sam hit the ball a couple of times, and made it around the bases too!!!!! I feel terrible, but really worry about this attachment, and kindergarden starting in a couple of months. Sam did just fine in Head Start, and I think he does better when I am not there. Like Teacher Terri from Head Start told me once "Sam LOVES his Mommy SOOO MUCH" I Love him too, and hope this is going to help him through his fears.

Well I hope you all have a Beautiful Day today!!!! It is soo nice here, the weather is Great!!! We are Blessed in so many ways, we just have to look around, and most often, not very far!!!!!

Please keep Melissa Welter, and her Boyfriend Justin in your Prayers. Justin lost his brother, very tragically a couple of days ago. Melissa, Justin, and his family could really use our Prayers for Strength, healing and Peace as they heal from this terrible loss.

Dear Friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.
1 Peter 4:12,13

God Bless

Kelly


Wednesday, June 18, 2003 12:42 AM CDT

Hello this Wednesday!!!!!!

Day 100

Remember not too long ago, March 11th, Carl received his Stem Cell Transplant???? Well today is 100 days Post Transplant!!!!! A milestone for a child fighting a very Aggressive, High Risk Cancer. Carl has come a long way since August 18th of 2002. He has endured more than anyone should ever have to go through in a lifetime. We are So Greatful and Give Thanks, many times a day to the Lord Above, for his many Blessings we have received, and continue to receive each and every day that we are allowed to have Carl still with us to Love and Cherish!!!!!

We try to Love and Cherish each and every day that we are Blessed with Carl, knowing that we are not in control of his destiny. We are Blessed, in that Carl has responded to all of his treatment so Well, and there is "No Evedence of Disease" (NED) today. We give all GLORY to God for his many good works and Blessings of ridding Carl of this terrible disease. We Pray that Carl will stay Healthy, and never relapse, as so many of these Brave Fighters have. The more time we spend in NY, at MSKCC, we realize that there are more children in a relapsed situation, than are not, which makes us Thank God for every day, and Pray for many, many more days to Love and Cherish Carl!!!!

Tom and Carl were given tickets from the Child Life Staff at MSKCC, for the Movie Premier of "Sinbad, Legend of the seven seas" He said that it was a very Exciting Event to go to!!!!! They had the Red Carpet rolled out, and Michelle Pfeiffer was there for the Premier. He did not see Michelle, but saw her later on the News broadcast of the event. They were treated to complimentary (little Hot Dogs in little buns) Pizza, Soda - Heehehee, and a candy lady with a tray came around with Movie Theatre Candy of their choice for the picking:) It sounds like they enjoyed the evening!!!! It sure makes the days more enjoyable, when there is a fun event, or outting to take part in!!!!!

Carl's treatments have been going pretty well this week. Tom said on Monday, Carl had no pain at all. Then Tuesday, after talking to the Nurses, and Docs, they discovered that all of the children on Monday "had no pain" after some investigating, they felt that something was not "right" with the mixture of the 3F8 Antibodies??? The Pharmacy told the Doc.s that they mixed them the same as they do every day??? Not quite sure what exactly happened, or if Carl got any benefit from Monday's treatment??? You don't want them to experience pain, but when you know that is a part of the "normal" routine, and that means it is doing it's job and working, you do question things??? The treatments were back to the usual/pain on Tuesday and today.

When they got done at the clinc, they stopped at McDonalds for a Chicken Nugget Happy Meal:) Tom said that Carl has figured out how to open his own ketchup packets now:):):):)(Minnesotan's use tons of ketchup) and he was squirting it on his plate, and all over the floor, as Tom was talking to me:) Isn't that cute, I can just pictue that scene!!!!!

Two more days left of treatments this week, then the boys will be back home!!!!! Their flight will be a late one, so it will be close to midnight when they actually get home:( Auntie Jill will be picking them up at the airport, and driving them out to the farm:) Jill and the kids are staying for the weekend, so they can get in on the Morgan Parade Sunday too!!!!! I picked up the signs for the Tractor from Krista yesterday, and they look GREAT!!!! It will be alot of fun!!!! Please Pray for NICE Weather!!!


God, I am thankful to be a living, breathing expression of your joy.

"Be glad in the Lord and rejoice."
-Psalms 32:11

Love & Happiness

Kelly
& Kids:)


Monday, June 16, 2003 12:19 AM CDT

Hi to everyone this Tuesday!!!!!

HAPPY BIRTHDAY TO ~ Marlys Robinson today June 17th!!!!! Wishes for a very Nice Day today!!!!! Maybe Kenny will take you out, for a Special Date!!!!! Love & Huggs to you both, Enjoy your Day!!!!!

Not too much new, just Anxiously Awaiting Tom, Carl, & Sydney to return home!!! Nick & Bryan have been trying to beat their record on staying up all night, then sleeping in the next morning:) LOL Sam is busy trying to figure out something fun to get Nicky to play with him:) I am still working on projects to finish before the crew comes back home:)

Have a Great Day everyone!!!!!!

Love & Prayers

Kelly

Bryan, Sam & Nicky

<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>



Hello this Monday!!!!! A Beautiful Hot day here in MN!!!

Thank You Ann for sending me all of those Great Pictures yesterday!!!! By the wonder of technology, I can see Carl all the way across the country, the same day he was captured in a photo!!!!! It was So good to see all of the Pictures, you all look so Good!!!! I see a resemblance in Tom, Keith, and Freddy:) Anybody else????? Pictured here is Keith, Ann, & Chris, Tom, Justin, Freddy & Patty & Carl:)

Tom said that Carl and He, had a Super weekend at Patty & Freddys!!!!! He said it is so Beautiful there, and so peaceful!!!!! You couldn't hear honking horns, and sirens constantly:) Carl was surprised with a bouquet of Orange Balloons from Patty on Friday night, when they arrived there:) I can just see his face!!! Tom said that Carl enjoyed all of the company that he met this weekend!!!! Thanks again to all of you there in NY for making it a very Special weekend for our two guys!!!!! We Love You all!!!

Thanks to Jeff as well for sending me those Wonderful Pictures of Sydney, and all of you on your vacation!!!!! I miss Syd terribly, so it was good to see her smiling face:) I Love the Hat Syd, but you don't look too excited about it??? The Cable swinging looks like a good time!!! We can't wait to have you back on Saturday Syd, your bunny misses you and we have.... one little, two little, three little kittens, four little, five little, six little kittens, SEVEN LITTLE KITTENS NOW... I think more are on the way..... Yikes:)

NEW PHOTOS ADDED TO THE PHOTO SECTION, be sure to check them out!!!!!

We had a Great Weekend here for Jean's Party!!! It was alot of fun, and it was So good to see everyone!!!!! We played a little kick ball, and Annie~Annie I-over, I can't remember if that is how you say it?? Tom missed out on some good fun there, I know he would have enjoyed those games:) The food was Excellent as always, and we all ate too much....As always

Our bake sale at Church was a Big Success!!!! I believe our team "Carl's Commando's" made over $400.00 for the A.C.S. (Relay For Life) which will be held on July 18th. Thank you to everyone that helped with the sale, and to those of you that donated some Yummy Baked Goods!!!!! We had a Huge amount of items, and were only left with a couple things:)

This week coming up ~ The Morgan Parade on Sunday!!!!!

"Carl's Commando's" will be the first unit in the parade!!!

None other than Carl, will be riding on a Huge Old Tractor (I can't remember the name of it) With Uncle Mark!!!!!

The rest of our team, (dressed in commando outfits) will be following behind the unit:) We are all excited about it, both about getting together for another family function, and to get dressed up in our Cute Outfits:)

Thanks to Krista Daniels, for offering your talents, and making our posters for us!!!!!!!!!!

Have a Great Day Everyone!!!!!!!

Love & Smiles

Kelly

Bryan & Sam
& Cousin Nick


Sunday, June 15, 2003 3:05 PM CDT

Happy Fathers Day to all the Dads, Grandpa's and God Fathers on this very Special Day!!!!!

This Picture was on one of the first rolls of film that was taken in Rochester Mn. at St. Mary's Hospital last August. I am not certain, but it may have even been the day that Carl was diagnosed with Cancer.

We got lots of Huggs from Carl, and we needed them as much as he did then. We still need Huggs from that little sweetie, and I hope Tom is getting lots of Huggs, and Mooches on Fathers Day from Carl out in NY today!!!!!

Enjoy your Day everyone!!!!!

Love

Kelly,

Bryan & Sam

We Love You Tom & Carl, and Can't wait til your back home again!!!!!


Friday, June 13, 2003 11:28 AM CDT

Hello and Happy Friday to Everyone!!!!!



HAPPY BIRTHDAY TO AUNTIE JEAN ~ On Saturday June 14th (Flagday)

This Picture was taken of Carl with Auntie Jean, back in December 2002, at the Rochester Mn. "Donald House"

Auntie Jean, and Auntie Jill, Nick & Kiri, & Uncle Chuck had come to spend the weekend with Carl, so that I could go home for a couple of days before Christmas!!!!! That was a very fun weekend for all of them!!!! They had alot of laughs, and made some great memories with Carl. When I heard about their Great time, I had wished that I had been there too, instead of home, as it really sounded like they enjoyed their time together!!!!! But it was a good chance for me to get away and spend some time at home with the rest of the family too:)

I wish it were as easy to get you all to NY with us:) We could really have some fun there together too!!!!! We have been so Blessed throughout this past year, with all of the help we have received from all of our Family and Friends!!! Many, Many times, I think to myself "We are So Lucky!!!!!" I probably sound like a broken record, but we can't exress to you all enough, how much we appreciate all of the times you have come to our assistance for Carl!!!!!

Tomorrow we will be celebrating Auntie Jeans Birthday!!! They will be driving up from Illinois, and stopping in Rochester on their way:) Wishes for safe travels to you all, as you make your way home for the Party!!!!! Today looks like it is going to be a Beauty:) Hopefully tomorrow will be just as nice!!!

Tom and Carl are done with their first week of Antibodies!!!!! Carl did very well, considering how difficult it can be for a little guy. Tom and I both agree, that it makes a difference in pain, if the pain meds are timed just right. But to find that "Right Timing" is so hard, and is very different each day. Freddy & Patty will be picking them up, this evening for the weekend, again!!! Thank You So Much, Freddy & Patty for Your Wonderful Hospitality, We are So Greatful for your Loving Kindness!!!!! :):):)

Please Keep all of the children in NY at MSKCC in your Prayers that are also battling this monster, especially Christi Thomas ~ www.christithomas.com The Thomas' are home for a three week break. They have received some very disappointing news regarding Christi's situation, and options with treatments. Please join us in Praying very hard for Christi's Miracle. My heart aches for what they are feeling, and having to deal with right now, I feel helpless, and wish I could lessen their pain.

"everlasting joy shall be upon their heads;
they shall obtain joy and gladness,
and sorrow and sighing shall flee away.
I, I am he who comforts you."
-Isaiah 51:11-12

God Bless

Kelly,

Bryan & Sam

P.S. No word lately from the Sydster??? But I know she is having the Best Time!!!!!


Wednesday, June 11, 2003 11:05 AM CDT

WOW Wednesday already!!!!!


I just talked to Tom, and was updated about todays treatment. It went very well, and yesterday was also much better than Monday!!! Today Carl walked all the way back to the "Donald House" after they were done at the clinic:)

The two of them have been taking walks and exploring some fun new areas of Central Park!!! They found a sand play spot, and Carl just loves it!!!!! The boys have always loved to play in the sand, but with the cats around the farm, it is too hard to be a kitty patrol. Speaking of cats, we have 4 new little kitties that need a home:) Anyone?????????

Sam had his second day of T-ball today. It was Picture day today!!! It was difficult getting him to go again, but when we got to the field, he joined his team without too much pushing!!! We had our little niece Abbey spend the night last night, so she was my company while we watched the boys practice, and get pictures done.

The two of them have been having lots of fun together, and I am getting my projects done!!! Just a few minutes ago, they came out with gel marker dots all over thier arms, legs, and faces:) They said "Weve got chicken pox" :(:(:( I hope Auntie Holly doesnt' mind Abbeys new look:)

We are getting ready for the weekend here, the Robinson's are celebrating Auntie Jeans _oth Birthday!!!!! It will be alot of fun getting together, and seeing everybody again!!!
On Sunday, our families Relay For Life Team "Carl's Commandos" is sponsoring a "Bake Sale" after church 9:30am at Sacred Heart Catholic Church in Franklin. All proceeds will go to the (American Cancer Society) Stop by for some goodies after church!!!!! Also, Carl's buttons should be ready by this weekend!!! "Cancer Free in 2003" we will have some available to purchase. (Proceeds also to the A.C.S.)

Thank you for Remembering us all in Prayer, it means so much to us to know that we are thought of, and kept safe, because of all your Powerful Prayers!!!!! God Bless You All!!!

"Do not be afraid, stand firm, and see
the deliverance that the Lord
will accomplish for you today."
-Exodus 14:13

Love & Smiles

Kelly & Sam


Monday, June 9, 2003 8:26 PM CDT

Hello on this Monday evening!!!!

Carl's room no 610
Carl's phone no 1-212-639-0610


Today was a very busy Monday, first day back for Antibodies morning at the PDH. Tom and Carl got there early, about 7:30am hoping that it would give them an advantage with the anticipated crowd. He said they almost got put in the second shift of children getting antibodies, but their nurse Gail managed to get them started on the first shift:) Thank God for all of the Sweet Nurses that Love Carl so much!!!!! We Love them all too!!!!

Carl did about the same as he did most days of the first round of treatments. Tom said that he got sick to his stomach though, and threw up all of his lunch that he had just eaten, while they were waiting to see when they would be taken back to a bed to get started. That was something new, as Carl had not been pukey the first round, but that is a common side effect from the antibodies, as well as hives. Carl was groggy after the treatment, and slept most of the afternoon when they got back to the "Donald House"

I am sure tomorrow, and the rest of the two weeks should go alot smoother, and be more routine. The first day is always the craziest, it involves more bloodwork, and a visit with Dr. Kushner. That is not all that bad though, we enjoy our visits with Dr.K. he is an amazingly funny Dr. alot of people think he has a bazzar sence of humor:) We get a charge out of him, and so does Carl!!!!! Dr.K. said that Carl looked Great, and his blood was excellent. He told Tom that he had better watch it, or he was going to keep Carl:) It is so wonderful that they all Love Carl as much as they do, and are not afraid to show it!!!!!

Sam enjoyed his first day of T-ball!!!!! It took a little coaxing to get him to join his team:( But after he did, he realized how much fun it really was!!! They practiced throwing and catching, and Sam is really a pretty good little thrower!!! He would look back at me every once in awhile with a grin on his face, It was priceless to watch him play his first day of T-ball. This is one of those Mom memories, that one day I will look back on, with a tear in my eye:)

Everything else is going Great on the farm!!! I have been busy today with a very big project that I have not got a chance to work on for the past year. Last year about this time, I bought some paint to redo the living room, and dining room. I wanted to get it done before our Fourth of July Hog roast, but that never happened:( Then from there, you know the rest, Carl was diagnosed with Cancer, and off to Rochester we went. The rest was History, no painting was to get done. So today, I went and got my pait shook up again:) and very Happily have almost half of my painting done!!!!! Sam was bored, and lonely without Sydney and Carl today, so I borrowed my little niece Abbey. She spent the afternoon with Sam:) They jumped on the trampoline with the sprinkler on (something they have been hounding me to let them do for about two months) The weather was Beautiful here today!!!! I am afraid that tomorrow will not be quite as nice though, it looks like rain right now:(

Speaking of the Fourth Of July Hog Roast~ This year we are planning on doing it again!!!! This year will be our third Annual Cellebration!!! The date has changed though from the 3rd to Saturday the 5th of July so please make a note of that, and we will be putting out more information later with all of the details!!!! THIS IS AN OPEN INVITATION TO FAMILY, FRIENDS, NEIGHBORS!!!! Anyone that would like to join us, and have a Great time!!!! So mark your calender, and we will fill you in more later!!!!!

I will sign off for tonight, and update more tomorrow!!!

Please keep Tom, Carl and all of the families at MSKCC that are doing Antibodies the next two weeks in your prayers.

Please remember in Prayer, all of the children around the world fighting Cancer, and other illness.

Wishes for a peaceful evening, and a Beautiful Tuesday!!!

God Bless

Love

Kelly & Sam


Friday, June 6, 2003 8:56 PM CDT

Hello this Sunday evening!!!!! Just a quick note to update on the NY boys:) They are in room 610 their phone no is 1-212-639-0610 It sounds like they had an incredible weekend with Freddy & Patty!!!!! I would have Loved to have been there with them!!! It also sounds like everyone is thoroughly enjoying Carl, and spoiling him rotten as well!!!! Thank you Ann for all of your Great guestbook entries!!!!! You brighten our days to log on and always see a note from you!!!!! We are truly blessed to have such Loving family there for us in NY!!!!! Our second home:)

Tom wanted me to mention something that Carl said this weekend:) To fully understand what I am talking about, The two of them spent the weekend at our Cousins place (Freddy & Patty Hauck) in Long Island, before going into Manhattan to the "Donald House" on Sunday. (Freddy is one of Aunt Margaret's sons) (Phyllis's sister Margaret) Anyway, Patty and Carl were out on their deck, visiting. Carl asked Patty about several of the neighboring homes that he could see. Then he asked Patty "Where's your Barn" LOL, They all thought that was pretty funny:)

Tomorrow Sam will begin his T-ball season!!! We are very excited!!! We spent alot of time today practicing:) We brought Grandma Greer back home from Woodale this morning after church for Breakfast. Both Mom & Dad enjoyed their time together today!!!!! I got Sam outside a little to do some T-ball practicing:) He also got some Practicing in at Grandpa & Grandma Robinson's this evening!!!! So did some of the Grown-up's:) Uncle Denny,Cousin Jenny, Auntie Janet, Uncle Johnny, Auntie Sheila, Mom and Sarah & Katherine too:) I think Sam will do fine tomorrow!!!!!

Last night Bryan & I watched the Movie "Sweet Home Alabama" It was really good!!!!! It made me reflect on all of us family here in Morton:) How Redneck we all are LOL, But how much fun we all have together!!!!! I Love getting together here at home, even if we are all "Redneck" Heeheeeheeee

Thanks everyone for checking in on us all of the time!!!!! It means alot to us to know that you are still with us every step of the way!!!!! We Love You all!!!!

"In him was life, and the life
was the light of all people."
-John 1:4

God Bless

Kelly & Company

****************************************************************

Good Evening this Friday!!!!!



Brayn, Sam & I just got back from the cities. We dropped Tom & Carl off at the Airport. We drove right up to the hanger, and were met by several attendants that helped unload their luggage from the car. They brought out a little cart on wheels, to make it easier to transfer. Carl jumped up on the cart, and rode in the building along with the bags:) I kissed them both goodbye, and left quickly, I knew I would start bawling if I waited very long.

Bryan has something that he would like to share with all of you!!! This is a Narritive Essay that he wrote about Carl and his journey with Cancer. Bryan brought with him, this essay, and others in a complete packet that he has worked on for several months. The score Bryan received was 209 out of 210!!!!! I am Very Proud of Bryan for his accomplishments in English!!!!!

My Narrative Essay

An event in my life that has changed my life dramatically, was when my little brother was diagnosed with cancer. My brother Carl was diagnosed with cancer in August of last summer. He was only about two and a half years old and I was devastated when I heard the news. I was really nervous because I didn't know what was going to happen as far as treatment goes. I was also very upset because I had one question going through my mind at the time, Why does it have to be Carl?

Carl is a tough guy and I knew he would make it because he's a survivor. All I could do at that time was pray but I knew God would listen to me. It was really nerve wracking because he had to go through a lot of chemo therapy. It was really tough looking at my brother in the hospital because sometimes he would get sick to his stomach. You could not help feeling bad inside because I love him and I didn't want to see him go through all of this.

All of our prayers have been answered because my brother is doing just fine. Right now he is in remission and is receivng special treatments to stop the cancer from coming back. He is in New York City and I miss him a lot but I know it's only for his good. Through this whole situation my brother has been back and forth from New York. I thank God for his blessings and I'm glad he's ok.

This situation has changed my life in a lot of ways. One important thing I have learned is never give up hope. There is a Relay for Life that remembers those that have survived and passed away from Cancer. This year our theme is Carl's Commando's. For costumes we are going to wear Army clothes.

My mother told me that these treatments can last as long as two years, but I want it to be over for good. Then my brother can come home for good and live a normal life. I will never forget what happened to my brother and I believed from the beginning that Carl would make it. I love him alot and I'm glad he finally made it.

I'm glad I got to share this with you don't be sad because Carl will be alright now.

By Bryan Creamer ~ Carl's biggest brother



Bryan also chose this verse today...

"Love is from God; everyone who loves
is born of God and knows God."
-1John 4:7

Love to all

Kelly

Bryan & Sam


Thursday, June 5, 2003 4:38 PM CDT

Hello this Thursday afternoon!!!!!

Thank you for remembering our Anniversary!!!!! I'm glad you all did, because Tom and I both forgot:>o I guess we have had so much going on this week, and our focus has been on Carl, Syd's birthday, end of school, Syd's trip, Tom & Carl's return to NY, Meetings, Bailing, chores, etc.etc.etc.

Maybe when Tom & Carl get back from NY this trip, We will have a chance to cellebrate with a night out or something??
Or maybe all of us will go to Dairy King and get an Ice Cream:) Tonight John and Sheila and the girls are bringing supper over for us!!! That will be a Wonderful treat!!!

Jeff got here this afternoon, and was able to go to the last day of school, awards ceremonies at Reede Gray. It was very hot in the gym, and the little boys were not on their best behavior. They were noisy, and antsy, and tired of sitting:( It was fun though, to be there for Syd on her last day of school, and watch her get her Certificate!!! She also got a certificate for being in the "Conflict Management" program. This program offers students a chance to work out, and solve their differences with a "Conflict Manager" to help by listening, and offering resolution.

Syd and Jeff have left to drive down to the airport. They are flying to Houston tonight, and meeting the rest of the family. They will all fly out from there to Costa Rica together!!! Syd is all set, with some adorable clothes that she and Auntie Jill and Kiri helped her buy the weekend she spent with the McVenes's!!! She put one of her new outfits on for tonight, Jeff mentioned that she should be dressed up, in case of the chance they get put in first class on the flight!!! Have Fun Sydney, We all Love You!!!!!

Carl and Sam are enjoying their last day together!!! They have been side by side constantly. I always remember what one of our Sweet Nurses Alice Goelz told us when Carl was born, since Carl and Sam are only 17 months appart. She said that when you go to look for them, you will only have to look in one place, because they would always be together:) I do believe that is holding true!!!!!

Tom & Carl will be flying out tomorrow night about 5:30pm I will need to get them to the airport by 4:30pm. They will be flying into the Farmingdale Republic Airport, on Long Island this time. Our cousins Freddy & Patty Hauck will be picking them up when they arrive. Tom & Carl will be staying with them until Sunday, when they will check into the "Donald House" Thank You Freddy & Patty for all of your help!!!! God Bless You both!!!!!

Sam and I will be picking Bryan up, when we are down in the cities tomorrow. He will be spending the weekend with us on the farm:) Bryan still has school until the 11th:( He is really looking forward to being done, then he will be able to spend a couple weeks with us before starting summer school. Sam will be starting T-ball on Monday!!! I am excited for him to be playing. I'm a little worried though, when I mentioned this to him, he said "No I don't want to!!!" I told him he will Love it, once he gets used to playing!!! I'm sure he will enjoy himself!!!!

Thanks again to all for your Wonderful notes of Love, Faith, and Encouragement!!!!! They really keep us going, and remind us how much we touch your lives as well!!!!

Please keep the whole family in your Prayers for safe travels the next couple of days.

Please remember in Prayer all of our friends that are also fighting NB, and other illness everywhere.

"You led them by day with a pillar of cloud, and by night with a pillar of fire, to give them light on the way in which they should go."
-Nehemiah 9:12

Have a Great Evening!!!

Love & Prayers

Kelly


Wednesday, June 4, 2003 7:40 AM CDT

HAPPY BIRTHDAY TO Sydney Today June 4th ~ 10 years old today!!!!!

Thanks to everyone for all the Wonderful Birthday wishes for Sydney!!!!!

Sometimes I think with the focus on Carl so much it is easy to forget the other kids in the process. I try to make each child feel Special in their own way, and to recognize them for their unique talents!!! They all have done so well throughout this past year, dealing with their own fears, and frustrations, and not always having Mom or both Tom & I here for them. I am very Proud of all of them for keeping strong. I think we have drawn much of our strength just from watching these Sweet examples!!!!!

Sydney has had a very nice day today!!! She is having her little friend Taylor spend the night tonight:) I usually do not allow sleep overs on a school night, but since it is her last day of school tomorrow, how can you resist!!!

My gift to Sydney, was a two part gift. Yesterday, I cleaned, scrubbed, and painted her Rabbit Cage, that has been sitting lonesome since the Pigeon went to birdy heaven, (actually I think I have seen him about 20,000 times since then in NY). Today she got a new little fuzzy friend to put inside her shiney new cage:) Syd's friend Hannah, has a litter of little Dutch bunnies that she is finding new homes for:) I was able to pick up Sydney's Bunny during the day, so she would be surprised when she got home from school!!! She didn't expect the bunny for a couple of weeks:)

The kids have been enjoying the Beautiful weather outside this afternoon. Sam & Carl have been little pests to the girls, and the girls have been trying to ditch the boys:) (I remember those games) Well the girls went running down to the barn to hide, and here comes Sam, running behind them with a glass of water to try to throw at them:) The humor in this scene, is all the while that Sam was running, the water was shooting out of the glass, so when Sam got there, he had an empty glass:) The girls got a good laugh out of that one:):):) LOL

Auntie Janet just pulled in, Carl is yelling out the window "Hi Janney wanney" :):) What a stinker!!!!!

I will sign off for tonight, but want to wish you all a very nice Evening!!!

God Bless you all!!!!!



This picture was taken this morning, as Sydney was going out the door to get on the bus:) Her Sweet Dog "Daisy", sitting next to her (Basset Hound/Rotweiler)????? is Syd's best tag-along:) Last night Sydney was giving Sam & Carl a ride in the wagon, behind the lawn tractor, and Daisy jumped in for a ride too. A little while later, she was back out, I'm not sure why, but as Syd pulled away, Daisy sat there and Howled and Cried the whole time she left her. I told Syd when she returned, that she had better haul Daisy around too, because all she is doing is Crying for her. So up she hopped back up into the wagon again, sitting Happy as can be next to the boys, getting a ride around the yard!!! What a Hoot:)

Have a Great day, we will update more later today!!!!!

Love

Kelly


Monday, June 2, 2003 8:27 PM CDT

Hello this Monday Evening!!!!

HAPPY BIRTHDAY TO ~ Zachary Thelen!!!!! Wow 10 years old on June 3rd!!!!! I always remember Zachs Birthday, My Sweet cousin Tammy was in the Hospital delivering her baby, just one day ahead of me, the same year:)(in different Hospitals though) Zach and Syd are just one day appart in age!!!!! We hope you have a Great Day!!! All our Love to you, and the whole Thelen Family!!!

Wow these weekends at home sure go by quickly. We had a very nice one, I hope you all did too!!! Tis the season for many graduation open house's, and partys. I can hardly believe the school year is nearing the end. I feel like I have missed most of it being away so much. Today I ran some errands, and stopped by the R.A.C.C. to see if I could sign Sydney & Sam up for swimming lessons, and Sam for T-ball, since I was gone during the official "Sign Up". I was able to, and am very excited about it!!! I am hoping for somewhat of a normal summer, even though it will still involve trips to NY to continue Carl's Antibody therapy. I just want to make the most of the precious time we have at home, and to try to give the kids back, some of the time and fun, that they have had stripped away this past year. These things seem to have a new meaning, and I have found a greater sence of appreciation for the opportunity to watch my child at a swimming lesson, or to yell and cheer for them at a baseball game!!! Something so simple can be taken for granted so easily, but I don't think will, ever again.

The boys have enjoyed their day together!!! They are both under the dining room table right now, with every vechile they own. Carl is bringing screw drivers from the kitchen drawer, so they can fix their trucks and trailers:) They are a two man wrecking crew of any room they inhabit, but with the mess, is hours of bonding, and Love that only two little boys can understand together. They were fighting earlier (normal brotherly behavior too) I reminded Sam that Carl would be leaving in a few days to go back to NY, and that he better enjoy his time that he has with him now, because I think he is going to miss him an awful lot while he is gone. The two of them thought about it for a few seconds, then went on playing like best friends again:)

The next couple of days, we will be packing fools around here. Sydney is getting ready to leave with her Dad for Costa Rica. Jeff will be picking Sydney up on Thursday, her last day of school. Then Tom & Carl will be flying out on Friday evening. I think it is just easier for the clothes to go from, washer to dryer, to suit case, and just skip the dresser drawers and closets all together:) We will also be Celebrating Sydney's Birthday on Wednesday!!! Our little girl will turn 10 on June 4th!!!! She asked if she could have a friend spend the night, since we wouldn't be having a party, I think we can manage that!!!!!

Have a Nice Evening Everyone!!!!!

"I will make them and the region around my hill
a blessing; and I will send down the showers
in their season; they shall be showers of blessings."
-Ezekiel 34:26

Love & Smiles:)

Kelly


Sunday, June 1, 2003 3:44 PM CDT

Hello on this Sunday Afternoon!!!

HAPPY BIRTHDAY TODAY TO Jane Distad!!!!! We learned at church this morning that it is Janes Birthday:) Hope you have a Wonderful Day!!! All our Love to you!!!

HAPPY BIRTHDAY TODAY TO Our little Niece Abbey Weilage!!!!! Abbey is 7 today:) What a fun age to be!!! Our gift to Abbey included some fun things to play with outside!!! Oh to be a Happy little girl, without a care in the world!!! Enjoy your day Honey!!! Our Love to you on this Special Day!!!

It was fun to see all of our Church Family today!!! We certainly miss our Sundays away from home. Sam has a new buzz haircut:) So you can hardly tell Carl is just growing his back for the first time in nine months, he matches Sam, and they both look like they are sporting a new summer doo!!! It was good to hear so many Great comments about how well Carl is looking!!!!!

The kids are with Auntie Sheila this afternoon, as to give me a chance to get up to Wood dale and visit Mom with Dad for a little while today. Dad is doing so well with his progress from his knee surgery!!! He has been practicing walking with a broad base cane, from the walker. He is planning on trying to get in the car and start driving again soon!!! I am always proud of Dad, he is so determined!!! Mom has been retaining quite a bit of water, and had a minor outbreak of shingles. She said that she is feeling better though.

The Robinson's around Morton are getting ready to gather at Grandma & Grandpa Robinson's for supper tonight!!! It has been many weeks since Carl and I have been here for a Sunday Supper, so we are looking forward to it!!! This will be our only Sunday home, before Carl will be leaving for NY again:( Tom will be taking Carl back for his second round of Antibodies this time. They will need to fly out on Friday evening, as this was the only Corporate Angel Flight available that could get them there before Monday. We were hoping they could fly out on Saturday or Sunday, but we will take Friday if that is our only option.

We hope you all have a Blessed Sunday evening too!!!

Please keep Brooke Harmoning in your Prayers, as she has been inpatient at Redwood Hospital, with a kidney infection. Bless her heart, we hope she is feeling better, and we Pray for a speedy recovery!!!!

Love & Prayers

Kelly


Saturday, May 31, 2003 6:27 AM CDT

Good Evening everyone!!!!!

We just got home from Bryan's Tournament!!! The Hawk's took 4th Place!!!!! Bryan was very disappointed it was not First:( But he knows that there is always "Next Year" and it was a Great game anyway!!!! We all had alot of fun:) I am very Proud of Bryan, and So Happy that he has this opportunity to play in Sports that offer such a Wonderful Experience for him!!!!! They are all Winners in my Book!!!!!! Congratulations Bryan!!! We Love You So Much!!!!!

Wishes for a Nice evening to all!!!

Love
Kelly

*****************************************************************




Good Morning This Saturday!!!

Today we are Featuring "Bryan" !!!!!!!!!!!

Bryan called last night, to Announce "The Humboldt Hawks

Won their first Game of the Adapted State Highschool

Softball Tournament"!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

In all the excitement, I forgot to get the score!!!!!

GO HAWKS!!!!!!!!!!!!!!!!!!!!

The Kids and I are on our way to the Cities to help Cheer

the HAWKS on to their CHAMPIONSHIP VICTORY!!!!!!!!!!!!!!

We will update later, when we get home:)



Have a Great Day Everybody!!!!!!!!!!!!!!!!!!!!!!!!!!



Love & Smiles

Kelly "Softball Mom"

& the rest of the crew:)


Wednesday, May 28, 2003 8:45 AM CDT

HAPPY FRIDAY!!!!!

We made it home safely, Praise the Lord!!! Our flight was delayed 2 hours, but we were treated very kindly with a Beautiful Lunch!!! The flight attendant that was waiting on us in the hangar, was wearing gold wings on her uniform from the company we were flying with (We are not supposed to give out the name of company due to confidentiality reasons) Carl spotted that, and told her that he wanted one. (Sometimes these kids can really embarass you) Well before we left, she actually found a real gold wing pin, in a little case, and presented it to Carl for a keepsake!!!

It feels so good to be home!!! The house and yard look very nice!!! I think some elves have been busy here:)

This morning I got up with Syd, and dolled her up with a pony tail before getting her on the bus!!! It feels good to do these normal Mom things again!!! The boys are still sleeping, so I will just let them sleep:) They need all of the energy they can get, they have big plans for numerous activities together today. I can't wait to see what they drum up!!!

Well I better go, I myself have numerous activities to accomplish here today!!! Lots of putting away, and loads of paper work to go through.

Have a Great Friday Everybody!!!!!

Please remember in your Prayers all of our Friends that are fighting this terrible disease too. I feel like I have left "family" behind in NY. We have met some of the most precious people, and that list keeps growing all of the time.

All of my springs of joy are in you.
Psalm 87:7

Love Kelly


*****************************************************************
Good Morning This Thursday!!!

Tom and Sam made it back to Mn. Safely!!! Carl was very sad when Sam left:( But was better when I told him that we would be going back too, when we wake up in the morning!!! We are almost ready to go, our pickup is at 9:00am, we will be driving to the Morris Town Municipal airport in NJ to get on our Corporate Angel Flight!!! We will arive back in MSP about 12:45 Now that we are leaving, it looks like a very beautilful day is in store here in NY Go Figure LOL

FYI ~ Bryan will be playing in the Adapted Softball High School Tournament that starts on Friday night. The Humboldt Hawks Won 6 out of their 9 games in regular season!!! GO HAWKS!!!!!!

If anyone is interested in the games here are the times!!!

Friday - 4:00pm
Saturday - 9:00am or 10:30am and if they win, they play again at 1:30pm!!!

They are playing at the Hopkins Highschool ~ The address is: 2400 Lindbergh Dr. Hopkins Mn 55305

I would like to make it to the Saturday games, and will be bringing Sydney, and maybe the little boys too!!! If anyone has any questions, or would like more Info. Just Phone or email us!!!!!

We hope you have a Great Day, Please keep us in your Prayers for Safe Travels back home.

Love to All

Kelly & Carl

*****************************************************************

NEW PICTURES ADDED

Carl is one Radiation Treatment away from being DONE!!!!!
We are all glad that this will be his last day. He has been Soo Good, and since Sam has been here to tag along to his Appts. It has been more pleasant!!! Carl has been feeling fairly well throughout all of his treatments, but last night and this morning has been complaining of pains in his back, and some in his tummy?? I mentioned this to the Nurse Practitioner, but she didn't seem to have an answer?? He has been having some diareaha the past couple of days, and this can happen from the radiation. I am wondering if the pains are just from the diareaha??? We certainly Pray that this is nothing serious. It gets to be very hard to live your life day to day, and not worry about every abnormal symptom. We have witnessed how fast a child can have a pain turn out to be NB out of control. It will always be a constant struggle to relax and not worry.

I mentioned we were given a Free double stroller!!! :):) Well here's the story: On Saturday we were out walking with Carl in his stroller, and Sam walking, running, skipping along, and then tripping on his face going down the sidewalk. The only thing NY has more of than Taxi Cabs is strollers, and we had seen these little boards with wheels that you can attach to the back of your stroller for an older sibling to stand on and hitch a ride on:) So as we were out walking around, we were on a mission to look for a store that has these cool boards. We were refered by one store, down the street to a Baby Furniture Store called "Bellini's" we entered the store, and visited with the lady working there, and the owner. The lady working there, asked us were we were from, and we proceded to tell her that we were staying at the Ronald McDonald House etc. Well it turns out that this lady, is a volunteer that comes on Wednesday nights to help with the Bingo each week:) Any way one thing led to another, and we didn't find one of these boards with wheels, but left the store with a New Double Umbrella Stroller, that they wanted us to take, as they had a few down in their basement, and were not selling them any more. So the boys have had a ball riding in this double stroller all weekend!!! It is a very nice stroller, but very hard to push, with a 50 pounder on one side, and a 33 pounder on the other side:) The stroller is coming home with us, but we are looking for a new home for it??? Anyone interested please let us know, it's yours!!! About the little boards, we found the place that carries them, but they only work on a Maclaren stroller. I told Tom, he should be able to rig something up on Carl's stroller for Sam that would work, for the next time we are here with the two boys together!!!!! He didn't think too much of that, he said "The kid can walk" But these boards are soo Cute:)

Well enough about the stroller!!!! Tom and Sam will be flying back home this evening, and Carl and I were able to get on a Corporate Angel Flight for tomorrow. We will be flying out about 11:30am and should arrive about 12:45. Tom and Sam are staying tonight with Auntie Joy and Uncle Clair (THANK YOU SO MUCH!!!!!! For putting up with us on all of these trips back and forth, We owe you more than we could ever repay!!!!!) then the two of them will be there to pick up Carl and I:) We are So excited to be coming home, it seems like it has been so long this trip.

We are hoping the weather back home is just as nice as it was through the weekend there!!! We are READY for some WARM weather and SUNSHINE!!!!!

Thanks everyone for your Steady Prayers and Constant Support!!! We Love you all, and Appreciate everything you have done so unselfishly for our whole family!!!! I think back on last August when this whole thing started, and how wonderful everyone was to us, and continue to be!!! I remember hearing all of the things that friends, family and neighbors were taking care of for us at home (mowing the lawn) and how much that meant to us!!! Here we are again, into another mowing season, and our SWEET sister-in-law Sheila has mowed for us!!!! Linda Radermacher, Thanks for your efforts as well, in Mowing our Dandelions, your an Angel:) I could just bawl, both because of it being almost a year and we are still relying on you all so much, and second because of all of the Love and Kindness we have received, and still are!!! God Bless all of you!!!

Carl will be due back on June 9th to begin his second round of Antibody therapy for two weeks. Then we will get a three week break back home before returning for the next round. As long as Carl does not get a "HAMA" he will stay on this schedule for four rounds. He will be starting to take Accutane (actually acne medicine) that helps to fight NB cells too. He will take this for about 6 months I believe. Carl will retest/rescan again at the end of July, and then every three months there after. We have sure come a long way since last August, but will need to stay alert for a very long time to hopefully keep Carl Cancer Free!!!!

Love and Prayers to all

Kelly & Tom
Sam & Carl:)


Sunday, May 25, 2003 5:04 PM CDT

Hello to Everyone!!!!!


HAPPY 30TH ANNIVERSARY!!!!! To Uncle Clair and Auntie Joy Murphy today ~ May 26th We are thinking about you today, and Hoping you have a very Special Day together!!! We wish you Many Many More Happy Years!!!!! All Our Love to you Both!!!!!


Thank you all, for checking in with us this weekend!!! We were very Surprised to see all of our New Angel Friends notes!!! Thanks everyone we Love to hear from you:)

We have been keeping very busy since Tom & Sam arrived on Friday afternoon. Carl had just been put to sleep Friday, when I met them in the hall as I was going into the waiting room. I was So thrilled to see them, and I knew that Carl would be even more, when he heard their voices as he was waking up:) The nurse wheeled him out of the Radiation room, and into the recovery room. We all went in to be by him as he was waking up. Dad and Sam began to talk to him, then Carl looked up at Sam and said "SAM" :):):) He woke up from anesthesia that afternoon, the best he had all week!!! The cutest thing for me, was when we got Carl dressed up again, and his shoes on. I set him down on the floor, and the first thing he did was to wobble over to Sam, he wrapped his arms around Sam and gave him a very Precious hug:) He said, "I missed you Sam" It was a tear jerker for both Tom and I.

Friday after the clinic, we had supper at a restaruant called "The Blue Moon" It is Mexican, and very good!!! The problem is, Tom and I both ordered their famous 12 Alarm Full Moom Chili. We were both very miserable the rest of the night:( The boys played Happily, not a care in the world, while Tom and I turned into Vegetables watching TV.

Saturday we took in the Childrens Museum, and the Museum of Natural History. Carl enjoyed showing Sam some of the exibits that he remembered from last weekend when we were there with Sydney:) It was fun to be back at the Museum again, we didn't get to see everything the last time we were there. I missed Sydney this time though, as last week we had walked through all of the Halls together, joyfully holding hands!!! Thinking back on last weekend, reminded me just how much I miss Syd:(

Today was a very exciting day!!! We took the excursion to the Statue Of Liberty. Sam was very thrilled to be on a boat, and just as Excited to Finally get to see "The Statue of Wiberedey" as Carl says it:) When we first got there, Tom left us in line to get on the boat, and went to go purchase our tickets, as there was a mile long line to get on the boat. While he was gone, one of the security workers spotted Carl with his little fuzzy head, and wearing a mask. She told us to come with her, and she took us right up to the front of the line. Tom came out to meet us about the same time, so we were brought right up to the front, to go through security and to board the boat:) That was very kind of them to do that for us, although we sure didn't mind waiting, and had fully planned on it. Yesterday I waited in line for about 45 minutes to get tickets for admission into the Museum. So we are used to waiting in long lines this Holiday weekend.

After seeing Lady Liberty, we walked up to "Ground Zero" What an Experience that was. I cannot even explain the feeling that I had inside as we looked on, where the World Trade Center once stood. There were alot of other people at the site today too. We thought this Memorial Day Weekend would be most perfect to visit this Historic Holy Place. One thing that captured our attention, and Hearts, was a Cross. This Cross was made out of some of the remaining pieces of beams from the buildings that had fallen. There were lights on the Cross, and a Flag flying near by, I can only imagine the Beauty of this picture, at night.

From there we walked up to (China Town) We walked down a few streets, and enjoyed what we did see. It started to rain, so we walked a few blocks til we could find a cab and came back to the "Donald House" What an very interesting place to visit!!! We both decided that we will have to go back there, on a week day, when the weather is better!!!

Tom and the boys just left to go down for a House BBQ. I will sign off for now. I forgot to tell you about the Free Double Stroller someone gave us yesterday!!! What a Hoot, I will have to fill you in next time:)

Have a Great Evening, and we will Update more tomorrow!!!!

Love & Prayers to all

Kelly & Tom
Sam & Carl:)


Friday, May 23, 2003 8:44 AM CDT

Hello and Happy Friday:)

One more radiation treatment this afternoon, then only two days left next week!!! Carl is being such a Good little boy!!! He is being very cooperative when we go in to get put to sleep, he is waking up nicely, and handling the "No eating" like a Champ!!!!! I am very Proud of him:)

We heard from Tom, he left a message on our machine a little while ago. They were getting ready to board the plane in about 15 minutes, so by now they should be airborne, and maybe even set up with "SODA" and peanuts by now!!! Carl and I are practicing saying "Soda" It sounds so unatural to hear that come out of our mouths, we wonder if anyone else notices;)

Sydney will be spending the weekend with Auntie Jill,Uncle Rick, Nick & Kiri. She and Kiri are planning on going to a movie together:) Alone, as Kiri is a fellow driver now!!! Then Auntie Jill and the girls will be doing some shopping!! Sydney is looking for some cute summer clothes to take on her upcoming trip to Costa Rica, with her Dad and his family!!!!!

Thanks for checking in on us!!!!! We GREATLY Appreciate all of your Wonderful Prayers being sent our way!!! And for keeping all of our friends of this "Common War" also in your Faithful Prayers!!!!! PRAYER IS POWERFUL!!!!!

It sounds like we are in for a Rainy Weekend here:( But it looks like nice weather back home!!!!! Enjoy Everyone!!!

"Give ear, O heavens, and I will speak;
Let the earth hear the words of my mouth.
May my teachings drop like the rain,
my speech condense like the dew;
like gentle rain on grass,
like showers on new growth."
-Deuteronomy 32:1-2

We Love You All!!!!!

Kelly & Carl:)


Wednesday, May 21, 2003 2:26 PM CDT

Good Afternoon this Wednesday!!!!!

Two more days left this week of Radiation!!!! Yea!!!!!

Today was "PROM" day at MSKCC!!!!!

A annual event put on by the Child Life staff of MSKCC. The children are dressed up in Formal Attire. The girls wear Beautiful Gowns, and the boys are in Tuxedo's or just anything that looks dressy. (Carl was between treatments, so he was not dressed up) Part of the Cafeteria is roped off for the Event. They had a Wonderful DJ group that played the Best music, and got the whole crowd moving:) They had a Delicious looking table of food, but (Carl was NPO so no eating for either of us) What a Bummer that was:( The whole Idea is to have a fun event that the patients can take part in and really have a Great time. Carl and I came back to the Hosp. about 12:00 after his first Radiation treatment. He was due back for his second about 2:00, so we had a little time to visit and enjoy the Party!!!

We spotted a couple of our Favorite Nurses from Carl's inpatient stay during Transplant!!!! We also got to visit with Father Steve at the party. Father would come in to see Carl just about every day while he was inpatient!!! He would stop by to visit, then play with Carl for awhile, and he would always leave us with a Blessing!!! He said that Carl looks soo Good!! I told him it was from all of the Prayers that we have received for Carl:)

Carl got lots of fun things at the Prom celebration today!!! He got a Crown, and scammed one for Sam and Sydney too. He got a Tamborine that the kids used during some of the songs!!! He also got this BIG FOAM HAND that you put your hand in to wave with. The kids used their big hands for the song "STOP in the name of Love" I can't remember who used to sing that one??? The Supreme's???
We had alot of Fun at the Prom:)

Tonight the "Donald House" is having an Italian House dinner!!! We are going to try to go down to it. Carl has been very tired, and falls asleep early lately. The time of the dinners here are usually about 7:00pm so it is already getting kind of late. Oh well we will give it a try!!!!! It will be good to visit with some fellow neighbors!!!!! We feel like we have a second family here, our family at our home away from home!!!

Thanks Dena for your Great Humor!!!! More Humor is always welcome People, we need to laugh to stay Healthy!!!!!

Have a Nice Evening!!!!!

Love & Prayers

Kelly & Carl:)


Tuesday, May 20, 2003 3:16 PM CDT

Hi Everybody:) Another Sunny Warm Day!!!

I don't know how long our luck will hold out??? I heard someone talking about rain:( I just hope we get a nice weekend again for Big Brother Sam's visit!!!

Today was much like yesterday, very tiring. Sometimes I look around when we are out on the streets, and get this strange feeling. It's a cloudy feeling, kind of a confusion. "Why are we here?" It feels like I am in "The Twilight Zone" I rely on Carl to keep us in reality. I look at him, and quickly return to what is normal for us today, to our task at hand "right now". And that is how we get through these stressful days here. One hour at a time.

Thank you for your notes that you have posted!!! Jenny I do appreciate your humor, or humor of any kind:) Sometimes we can laugh at anything, even things that seem to be stupid to others:) I feel kind of punchy right now:)

Right this minute I just got the best laugh!!!!!!!!!

Carl is stripping down to get in the bathtub. I heard what sounded like (a little kid peeing) I just turned my head to take a look, and saw him standing by the pot, with his diaper half down actually peeing!!!!! Then he announced to me, his Grand News!!!! Maybe I should start working on Potty training:) That was cute!!!!!!!

Keep the Prayers coming for all of the little children here fighting NB and all of our little friends everywhere fighting Cancer and other Illness.

Especially remember in Prayer, our little roomate Michael from our first week of Antibodies. He is Inpatient at Memorial Hosp. with complications from his progressive NB

The best things are nearest:
breath in the nostrils, light in
your eyes, flowers at your feet,
duties at your hand, the part of
God just before you
-Robert Louis Stevenson

Love to all

Kelly & Carl:)


Monday, May 19, 2003 11:20 AM CDT

Hello on this Sunny Beautiful Monday (at least in Ny it is:))

HAPPY BIRTHDAY to Lacey today!!!!! We wish you a Most Special Day!!!!! Our Love to all of your family "UP NORTH" We were wondering if you all have sore fingers from sewing all of those beret's ????? :):):) We Can't wait to see them!!!!!

Today begins a week of radiation for Carl. He is in between treatments right now, and Whining that he "Wants to eat" I can't blame him, this is a very hard expectation:(

This morning took a couple of hours, as they needed to get set up with marks, and pictures of the radiation areas. He has little dots all over his little head:( They are just pen marks that will wash off..... I hope.

We will go back to the PDH for the second treatment in about an hour. It will only take about 5 minutes this time. I promised Carl that we will be able to eat, just as soon as we get done this next time. He is actually being a pretty good little trooper:) I feel more stressed for him that he has to go through this than he does.

We had a very nice weekend together with Dad & Sydney!!! We went to the Museum of natural History. What a huge place, I don't think we got to see even half of everything. We went to a couple of space shows in the planetarium, and to the Butterfly conservatory!! Carl enjoyed the Dinausaur's and the stuffed animals the most:) We walked back from the museum, as we were not too far across Central Park, and the day was Beautiful for walking. We got to see the other side of the park that we have not been to yet. We were very surprised with a couple of little water areas, and Goergous flowers and greenery. There were alot of New Yorkers taking advantage of a warm afternoon in the park with many activities. There is a little pond area where people sail little life like sail boats with remote controls. They actually have a boat slip building that you can rent space in to store your boat:)

Carl spent about an hour crying when Dad and Sydney left yesterday. He cried himself to sleep, then when he woke up he started in agian. It is so nice to have them here, but so hard to see them go, and even harder on Carl. This coming Friday, Tom will be coming back (With Sam) to spend the remainder of our time here with us. Our last radiation treatment will be next Wednesday. We are going to try to line up a Corporate flight back home for Carl and I, if possible on Wednesday evening, or Thursday.

Carl is Soooo EXCITED that Sam will be coming to stay with us!!!!! But he wants them to get here RIGHT NOW!!!!! I would like that too, but Sam will be finishing his week of school, (Head Start) on Thursday!!!! They will be having a little Graduation Celebration for the year, and we really didn't want him to miss that:) I know that he will Enjoy being a part of it!!!!! This has been a Great year for Sam, next year he can ride the Big Bus with Sydney:) Oh no I can feel the tears coming on already:(

This weekend we met another family here at the "Donald House" from Idaho. They have a little 3 yr old boy James:) He is also on his first round of antibodies. It was fun to visit with them, and fun for Carl to have a little friend to play with outside for a little while!!! They are Super Nice People!!!! One of my Favorite experiences of our Journey here to New York will always be meeting all of the Fantastic Families that we have met!!!

It takes so little to make us glad,
Just a cheering clasp of a friendly
hand, just a word from one who
can understand; And we finish
the task we long had planned,
And we lose the doubt and the
fear we had-So little it takes to
make us glad.
-Ida Goldsmith Morris

Love & Sunshine

Kelly & Carl:)


Friday, May 16, 2003 3:23 PM CDT

Happy Friday to Everybody!!!!!

HAPPY BIRTHDAY to ~ Brett Lisson today!!!!! WOW 15!!!!!
Hope you have a Great Day!!!! Say Hi to your Mom & Dad and sisters for us!!!! We Love you all and Can't Wait to see you all agian!!!!!

Today was our Last day of Antibodies for this first round!!!!!!! YIPPIE SKIPPIE!!!!!

We got to meet Diane D. ~ Sophia's mom today at the PDH!!!!! Diane is from Boston, we met via our websites during Carl and Sophia's Stem Cell Transplants!!! They both were in Transplant at the same time:) Diane had an appt. with Dr. Kushner today. It was alot of fun to finally meet her, and have some time to visit!!!!! Now we can't wait to meet her little Dolly Sophia:)

Carl was blessed with a TV today, and by the efforts of Harrison's Grandma & the Child life staff ~ (((Shrek))) to watch!!!!! Although he only watched about a half an hour. The Clowns came in for a visit (which actually took Precedence) Then after getting through the "pain" part, Carl went to sleep for awhile before getting unhooked for the weekend!!!! He insisted on walking for a couple of blocks, before getting into his stroller to go back to the "Donald House"

We are very EXCITED, as Tom and Sydney are on their way out to spend the weekend with us agian!!!!! We are hoping for nice weather tomorrow, to get out and enjoy the day!!!

One of the things that I've missed about living in the Twin Cities, is all of the activities that are going on all of the time. New York is very much that way!!!!! Tomorrow is the Annual "9th Ave Food Festival!!!!!" They block off 37th through 57th streets for this event. There is food, and activity from one end to the other. We are thinking about checking that out tomorrow!!! If the weather is rainy, we may take in one of the Museums. It will be soo good to have Dad & Sissy here, as these trips away from home start to feel very long.

Carl has been calling Dad every morning to wake him up:) He sings that song, that Grandma Phyllis used to sing to all of the little Robinson children, You know the one~

It's time to get up
It's time to get up
It's time to get up
In the Morrrrninnngggg

It is So cute to hear him sing that, I will have to try to record him some time:) It is a great day starter for Dad!!! Just so we don't call too early, as it is an hour earlier back home:)

Thanks for keeping us in your Prayers this week, and last week and always!!!!! It has surly helped to get us through such a difficult time in Carl's journey. Our next hurdle will be radiation. Carl will have radiation, Monday through Friday, twice a day, next week. Then on Tuesday and Wednesday of the following week. WE CAN DO IT!!!!!!!!!

Have A very Nice Evening!!!

If any man is in Christ, he is a new creature; the old things passed away; behold, new things have come.
Corinthians 5:14-21

Love & Huggs

Kelly & Carl:)


Thursday, May 15, 2003 3:04 PM CDT

Hi to all this Thursday!!!!


HAPPY BIRTHDAY TO ~ Tom Holscher Im sneaking this in, I just realized I almost forgot Tom's Birthday;) Elaine, We hope you and Tom do something fun!!! We wish you much Love, and Happiness!!!!! Enjoy your Day:)


HAPPY BIRTHDAY TO ~ Uncle Terry Weilage today!!!!! Sydney is excited to give Uncle Terry his Birthday present:) She picked up a couple of fancy Cigars from a local shop last weekend when she was here:) Uncle Terry won't see this, so we can share that with you Heeheehe HAPPY BIRTHDAY TO YOU!!
Have a Great Day, we Love you and miss you!!!!!!

Our little Screamer is still sleeping!!!!! The effects from the Dilotted (sorry I can't spell that) If anyone knows please help me out!! A Horrible reminder of Carl on "Decadron" (I can't spell that either), during our chemo rounds not so long ago!!!!!

Today, the TV being on the fritz did it!!!!! The TV'S in the PDH rooms were not working all week. Today it bothered Carl and he let everyone know about it!!!!! The only ones he was nice to was THE CLOWNS!!!!!!!!!!!!!!!!! Our little sweet roomate Harrison, (BLESS his heart, and his Mommy's and his Grandma's) Very understanding people:) they let us use the portable TV that they were using, after our nurse Gail tried to bring in another one on a cart, but it was not working for some reason!!! Carl was sure we did that on purpose!!! Anyway, little Harrison was ready to try to go to sleep, and let us use his TV. About 2 minutes after we got it switched over, and a movie running, Carl decided that he wanted it off, so he could take a NAP!!!!! Bless his little heart today too, I know it's not his fault, all the Horrible stuff he has had to submit to these past two weeks!!!!! I just wish I could make everything all better.

Tomorrow is the LAST DAY!!! of round one. The schedule of this Antibody treatment goes as such, and I'm not sure I am even going to explain this correctly but here it goes:

The goal we are trying to reach is called HAMA (Human Antimouse Antibody)

The goal is to not reach it right away, because this would mean that Carl is immune to the Antibodies, and this whole treatment will not work, and would be pointless to continue.

To be HAMA negative for about four rounds would be the best result, as the Antibodies would have a chance to do their job of killing NB cells.

So if Carl's blood (when tested back home) shows HAMA negative, then he will be able to receive another round of Antibodies in three weeks.

He will follow this same schedule, three weeks off, then two weeks of Antibodies for 4 rounds if he continues to show HAMA negative.

If he is HAMA possitive before the four rounds, then I believe we will stop the antibodies. If he is still HAMA negative after the 4 rounds, then he will be on a schedule of 6 to 8 weeks inbetween rounds???

If a HAMA is reached say after 4 rounds, then he will continue to have his blood checked for the HAMA to disappear. When it is gone, then he would start the Antibodies again, and follow this same pattern for up to two years, but no longer than two years.

I'm not sure I completely understand this whole concept, but the Idea is for the Antibodies to work on a suppresed Immune System, such as Carl's shortly out of transplant. The Antibodies do their job to kill cancer cells, while the childs body is not strong enough to either fight off the cancer cells on his own, or to fight off the Antibodies.

We feel very fortunate that Carl is at this point, of being through transplant, and able to start Antibodies. It seems as though we have met more children that have not been cleared enough to make it to transplant and get to this stage, verses children like Carl, that have had such an excellent response to all of his chemo, and been able to get transplanted. We are very Blessed with Carl's success, expecially since his Diagnosis did not have alot in his favor, with all of the metastisis, and 90 percent bone marrow involvement. PRAYER IS POWERFUL EVERYONE

Please keep all of the children at MSKCC in your Prayers. All of the little children with NB or any Cancer fighting for their lives, and undergoing various treatments.

Please keep Jonathan Royal in your Prayers, he is a little friend we had met at the Rochester "Donald House" His family has been a wonderful source of support throughout Carl's illness. Dena is a single Mom, and is the Greatest Super Mom I am privileged to know, She does it all by herself!!!! Jonathan needs some extra Prayers to get over this bump in the road with his illness.
www.caringbridge.org/wa/royal visit Dena & the Kiddo's and offer your support!!!

God Bless all of you, We Love you Dearly!!!!!

As you know, we consider blessed those who have persevered. You have heard of Job's perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy.
James 5:11

Love & Happiness

Kelly & Carl:)


Wednesday, May 14, 2003 3:22 PM CDT

Hello this Wednesday:)



"Send In The Clowns"

Isn't it Rich
Aren't we a pair
Me here at last on the ground
You in Mid-Air
Send in the Clowns

Isn't It Bliss
Don't you approve
One who keeps tearing around
one who can't move
Where are the Clowns
Send in the Clowns

Just when I'd Stopped
Opening Doors
Finally Knowing the one that I wanted was yours
making my entrance again with my usual flair
Sure of my lines
No one is there

Don't you Love Farce
My fault, I fear
I thought that you'd want what I want
Sorry, my dear
But where are the Clowns
There ought to be Clowns
Quick send in the Clowns

What a Surprise
Who could foresee
I come to feel about you what you felt about me
Why only now when I see
That you've drifted away
What a Surprise
What a Cliche'

Isn't it Rich
Isn't it Queer
Losing my timing this late in my career
And where are the Clowns
Quick send in the Clowns
Don't bother they're here


This song runs through my mind every day now, of Antibodies. The Clowns are a Blessing beyond words!!! Today Carl was gliding through his IV drip, without much discomfort. The Clowns came by, and I promised Carl that if I saw them in the hall, I would "Send them in" :):):)

I waved to one of them, and they quickly shuffled into our room. Carl enjoyed their magic tricks, and tried to figure out the disappearing light that they took off of his blood oxygen, finger tape deal that he wears during treatment. (you know, they call it the ET finger thing) they made the light re-appear eveywhere, including behind Mom's ear:)

Just when I thought we were getting through without pain, Carl could not hide his hurt any more. The tears started flowing, and the OWIES to go with it:( The Clowns kept up with their wonderful distractions. I heard one of them say to the other, "Lets ride this one out" and they stayed and sang to Carl, and helped to get him through the hard part today. God Bless the Clowns!!!!! They are a God Send for Carl!!!! Luckily this works for Carl, because he is that type of little kid, that enjoys being Entertained!!!!! Some of the little children prefer to be left alone.

Two more days left this week!!!!! I Pray that we get through the last two treatments as uneventful as possible!!!!!

I visited with Steve and Becky Smith (can you believe that, I know a Steve and Becky in Franklin) from NC. Their little girl Sarah was having a bone marrow aspiration done today. They are such a nice family. They sing, and record Christian music. I was blessed from them, with a gift of one of their new CD's titled "Like a Blanket" If you would like to read about Sarah and her family, their website is www.caringbridge.org/nc/sarahsmith

Sara Hammers told me once, maybe their son Daniel was already cured, and the reason God brought them to NY was to meet all of these Wonderful People!!!!! I have to agree:)

God Bless and enjoy your evening!!!!!

Do all the good you can, By all the means you can,
In all the places you can, At all the time you can,
To all the people you can, As long as ever you can.
-John Wesley

Love & Prayers

Kelly & Carl


Tuesday, May 13, 2003 12:56 AM CDT

Hello on a Tuesday afternoon!!!!!

New Pictures scanned and added!!!!! Thanks to those of you that sent them to us!!! We Love Them!!!!!


HAPPY BIRTHDAY to Tim Wolter today!!!!! Wishes for a very Special day!!!!!

A Very Big Thank You to Mrs. Schmoll's Kindergarden Class in Bird Island!!!!! Today when we got back to the Ronald McDonald House from Carl's treatment, we checked our mailbox, and found a very nice surprise!!!!! The Picture of all of you is just adorable, and Carl Loved all of the pictures that you made, and colored for him:) You guys are a very Special bunch of kids to think of Carl, and do this for him!!! We can sure tell that you have a Very Fun Class!!!! Thanks Again, you all Made Carl's Day:)

Not a bad day for treatment. A little aggitation again, but that was quickly gone, and replaced with loads of energy!!!!! Carl wanted to walk back from the PDH. I convinced him that it was too far, and compromised with letting him out of his stroller at the corner of 1st Ave, and 73rd St. He ran ahead of me, and his stroller, all the way back to the "Donald House" :):):) He still has not napped, and just asked to take a bath!!! (Playtime, when there is nothing else to do) We tried to go down to the computer room to scan a few pictures (One from Krista of the kids for Mothers Day, one of Linda's Daycare with Sam in it:) One from Holly of her kids, with Syd & Carl, and the one we got today of Mrs. Schmoll's K-class!!! We will go back later to see if it is open:)

Carl's hair is beginning to "Sprout" :):):) It is Sooo fun to see a little change every day:) You still have to look very close to see his new growth, and it is very blonde. We still are hoping for "Orange Curly Hair" time will tell how it turns out;>) It has been So long too, since he has had eyebrows, and eyelashes!!! He is sure turning into a Dolly:):):) I have to admit though, I will miss mooching up his little bald head!!!

Wishes to everyone for a Relaxing, Peaceful Evening!!!!!

"I have now come out to give you wisdom and understanding. At the beginning of your supplications a word went out, and I have come to declare it, for you are greatly beloved. So consider the word and understand the vision."
-Daniel 9:22-23

Love

Kelly & Carl:)


Monday, May 12, 2003 12:00 AM CDT

Hello to everyone this Monday!!!

Thanks to Justin Hauck!!!! For showing us what Carl would look like in Orange Curly Hair:):):) I can't wait to show Carl when he wakes up from his nap!!!!

Thank you all for your Beautiful Mothers Day wishes!!! I also found a couple of surprises in our Mail Box here yesterday!!! When we checked in a week ago, they never gave us our mailbox key, so I have not checked for any mail. Yesterday we decided that we had better get our key, and sure enough we had mail!!!! Thank you Krista for the card and Picture you did of the kids, that was So very sweet of you!!! Sheila, John & Girls, Thank you for the Beautiful Angel, and very Special Card!!!! I feel very Blessed to be thought of by so many!!! God Bless You all!!!!! I talked to Bryan, and Sam yesterday too:) I miss them both and really miss being at home with everyone together. Our weekend was very Nice, but very Sad when Tom and Syd left to go home. Carl just can't understand why we must stay here:( It just breaks my heart, as he misses being back home so much. I told Carl I feel very sad too, let me hold you and we can cry together.

Today's treatment was manageable. It is so funny how you never can predict exactly how any day will go. Each day is as different as another. Today, the pain was not too bad, I think we timed the pain meds better. Carl did not experience any aggitation the way he did on Friday, which was very nice. I let him sleep longer at the PDH, before we left there, and I think that was also better for him. He went right to sleep when we got back to the "Donald House" and is still sweetly sleeping.

We have a new batch of Nurses, and kids in the other beds getting Antibodies, so I expect it will be a whole new experience this week. I still can never get over, how many children are here with NB. And new families that keep coming weekly. I met a Dad this morning in the elevator, as we were leaving to go over to the clinic. They had just got in last night about Midnight, so he was not sure where to find a grocery store. His daughter (I thought he said is 7 yrs old) also has NB. They are from NC, and also know the Barnes family from Duke:) What wonderful people you can meet here, and feel like you have something very Huge in common with, (An Ugly Monster...NB) This little girl is also out of transplant, and they are meeting with the Doctors here about starting Antibodies.

I received a call last week about Carl's upcoming radiation. I have since, been experiencing alot of anxiety
about it. We talked about Carl's last scans, and reports that were reviewed. It is their feeling here, that Carl will need to have his liver radiated, kidneys, and the original adrenal gland site. He will also have his eye (orbits) area and part of the skull included since he had so much involvement of the head. The Dr. explained that the risks of not doing this, outweigh the risks of doing it. She feels that they will be using such low doses, that side effects and risks are very low. It is just the most scarry thing we have had to consider, however we feel that it is necessary, and that they have treated the most NB here, including the radiation of this disease. What is so disturbing to me, is the discrepancy between the plan for radiation here, and the plan, had it been done at Mayo??? Originally the only site to be radiated, was the adrenal gland area. Even during surgery (back in Dec.) the liver was examined by ultrasound, and it was thought to be ok???

I believe this is another one of those things, where we just have to have faith, trust and believe!!! Last night, in a dream, I was being told (I don't remember by who??) that Carl was going to be alright!!!!! Maybe this was a sign from the Lord.

Please keep all of the children here at MSKCC that are here also treating for NB in your Prayers. And all of the children everywhere with Cancer and other life threatening illness, Pray that they all find complete healing.

Jesus said: "I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you."
Matthew 17:20

Love

Kelly


Saturday, May 10, 2003 8:19 AM CDT

Good Morning This Beautiful Saturday!!!!!

Carl and I were very Surprised last night about 12:30am!!!!!

Tom and Sydney had arrived to spend the weekend with us!!!!!

We are Very Excited, and Happy that they are here!! We are getting ready to go out and have a fun day together here!!!

Thank you all for your very Sweet Mothers Day Wishes!!! I too would like to Wish all of the Mom's, Grandma's and Great Grandma's a very Special Mothers Day!!!!!

God Bless You All!!!!!!

"Honor your father and mother"-Which is the first commandment with a promise-"That it may go well with you and that you may enjoy long life on the earth."
Ephesians 6:2-3

Love & Happiness

Kelly & Tom
Sydney & Carl:)


Friday, May 9, 2003 10:03 AM CDT

Hello on this Friday!!!!!


HAPPY BIRTHDAY to Dan Murphy today!!!!! We hope you have a Great Birthday Dan!!! Have Fun and Enjoy your day!!!! We Love You and Miss you!!! Today Carl wore a Spider Man shirt, and a Nurse gave him a Spider Man sticker to go with it!!! Of Course I thought of you:)

We are back from our last treatment for the week!!!!! I am Happy we will have two days free!!! We can sleep in, and not have to go anywhere, unless we want to!!!! I am sure that Carl will want to go do something, it is pretty hard to keep him down:) Yesterday, he never napped from the time we came back from treatment, til about 8:00pm??? I could not figure that out??? Carl wanted to go out on the terrace and run around a little. So we did:) It was kind of chilly though, even with our jackets on. So he ran around a bit, we threw a little ball around for awhile, then came back in. We went down to the activity in the dining room, they had painting, and coloring for the kids. We also played in the playroom downstairs. Carl misses Sam and Sydney So much:( He keeps asking me "Mom, what are we going to do here?" or "Mom, I don't know what to do here?"

Todays treatment was very different from all of the other days? I think we did not time the first dose of pain meds correctly, and that was the problem from there on. Carl did have some considerable pain, but he is really learning how to get through it. He asked for the oxygen breathing hose (we hold it in front of his face, to help his breathing, and to help calm him down) He held it himself some, and asked for his warm packs right away. What was difficult today was Carl's aggitation!!! He was cranky, bossy, and demanding about everything:( Our friend Ann with little Michael, just had to chuckle, as Michael is often aggitated, so she totally understood my frustration today. One of our Nurses went to find the Two clowns as they were making the rounds again today!!!! They came in and entertained Carl for awhile:) He did Love that, but they could only stay for a short time:( God Bless the Clowns for their wonderful Talents!!!!!

The rest of the day we will just hang out, and relax!!!!! I hope you all have a Great Friday!!!!!

THANKS for keeping up with Carl's Journey here in NY, we Thank you for your Steady Faithful Prayers too, we Appreciate all of you Support!!!! God Bless You All

And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.
1 Peter 5:10

Love

Kelly


Thursday, May 8, 2003 9:41 AM CDT

Good Morning on this Rainy Thursday!!!!!

We are already back to the "Donald House" from 3F8 treatment, and Carl is resting watching "Blues Clues"

Carl woke up very HAPPY which followed him through our whole morning!!!!! Praise Be The Lord!!!!! We brought our little friend Michael a "Spider Man" Juice bottle, so that he would have one just like Carl's:) He is such a cute little guy!!!!!

Carl was acting goofy, and fooling around with everyone he saw this morning. He was even calling our little nurse Gail, "Gail-eee" I was waiting for Gail-eee-wail-eee but he didn't go that far:)

One of the story gals from "Just one more story" came around and offered to read to Carl for awhile. At first I thought Oh My in a couple of minutes he will be in pain and not very comfortable, but I was glad for the distraction, as he made it completely through the infusion, and flush without a peep!!!!!! Then he started to get a back ache, Carl rolled over to face the wall and I put a hot pack on his back. Less than a minute later, the two Ringling Bros. Clowns were out in the hall, one of them fiddling a tune:) Within about a second of hearing that, Carl flipped over to look out the door, and said to me "Hey get those Clowns in here" :):):) I just looked at the nurse and Ann (Michaels Mom) and we all laughed!!!!! The clowns did come in, and did a Hilarious skit, one of them had a Medicine syringe that actually played like a little flute??? He played the Eensy Weensey spider on it:) Then the two of them played Pop goes the Weasel. The other clown had a 60cc syringe, and on cue, made a "POP" for his part of the diddy:) Lots Of Fun for Carl. He watched the entire routine, when they were all done, the nurse said thats it, he's done, it's over,!!!!! We were able to leave about 20 minutes later!!!

I told our Nurse that we need those Clowns for every day of our 3F8's!!!! She agreed with me:):):)

So one more day of treatment for this week, then all of next week too. They do say that on Monday, it could be tough again, since he will be off for two days on the weekend:( After our second week of antibodies, we will begin 5 days of radiation. and the following week for two days. I am still not clear if he will get radiation on Memorial day or not, I have heard that the PHD is closed on the holiday, but not sure about the whole building??? So we should be able to come back home around the 28th of May. The sad part is, that our home stay will only be for about a week and a half, before we need to come back for antibodies again:(

Please remember in your Prayers, all of the children here at MSKCC, fighting along with Carl. And all of the children everywhere with Cancer.

"Therefore, my beloved, be steadfast, immovable, always excelling in the work of the Lord, because you know that in the Lord you labor is not in vain."
-1Corinthians 15:58

Love to everyone

Kelly


Wednesday, May 7, 2003 12:28 AM CDT

Good Afternoon to all on this Wednesday!!!!!

HAPPY BIRTHDAY TO JODY WELTER TODAY!!!!!!! May your day be very special and filled with many Blessings!!! We Love you Jod and Miss you too!!!!!

Today Carl did not hesitate to go back to the clinic thismorning:) He wanted to show off his little "hand held fan" that he conned me into buying for him yesterday:)

The treatment was about the same. It was different in that he did not experience any discomfort all the way through the complete dosage. It started after the 3F8's were done infusing. So up until the pain began, Carl was sitting up visiting, eating some Captain Crunch cereal like nothing was even hitting him. But when it started, it took off, and his heart rate shot up very high again:( The nurse took his pulse manually, and it was actually 30 to 50 points lower than the machine was registering at that point. She said that when the child is crying or moving around alot, it can show a false reading??? The nurses are very experienced at what they are doing, and very good about helping the parents handle their fears. They have seen many many children, and parents through these antibody treatments, and assured me that this is very normal for Carl's age.

We have become aquainted with Ann, and her son Michael in the other bed sharing a room with us. Michael is four, and a very sweet little boy too:) Ann was telling me today, that her husband was a NY firefighter. He was killed in some rescue/collapse, Prior to the 911 tragedy. She said that about a year later, Michael was diagnosed with Neuroblastoma. She is a very strong Mom in my book, handling all of this by herself as she has done!!! Ann got Carl to take his Tylenol by mouth two days now:) Yesterday she said to Carl "If you take your Tylenol, I will get you a Pop, would you like a Pop?" Well Carl shook his head yes, and then took the Tylenol. So Ann brought Carl over a (Lolly Pop) :):):) Now all of you Minnesotans know what Carl was looking for don't you??? :):):) Then today the same thing:) Carl never complained or mentioned anything about not getting a Pop. But later he looked at me and said "Mom this is not a sucker, it's a Pop!!!" :):):)

Update on Bryan's Softball teams GREAT record!!!!!
The Hawks beat South Suburban 11 to 4 yesterday, and take on Whitebear Lake today!!!! Go Bryan!!!!! Thanks to NY Cousin Ann, who showed me a St. Paul Athletics website, I can keep up to date on Bryan's Softball Scores!!!!!

Thank You all for your Great Support through your guestbook entries, your emails, your phone calls, your Prayers!!!!! We are Truly Blessed to have such a network of Love!!!!!

Thanks to all of you too, that give support to our Friends that are also battling Cancer and illness with thier children. Today Angela came up to me and mentioned that one of my relatives had left them a very nice email this morning!!!! That made me feel very PROUD to have such a wonderful family that spread some of their Love beyond our family, to another who also needs support!!! You Guys are Great!!!!!

Wishes for a nice Evening!!!

"Then your light shall break forth like the dawn, and your healing shall spring up quickly."
Isaiah 58:8

Love & Happiness

Kelly


Tuesday, May 6, 2003 12:28 AM CDT

Hi Everyone on this Tuesday!!!

I'm sure you all are wondering about Carl's day today, We had a better day than the first, both Carl and Mom.

We got back to the "Donald House" about 12:30 NY time, so 11:30 back home time:)

We had a earlier start today. Carl's port was already accessed from yesterday, so we did not have to do that, which seems to add time on. And he can keep it accessed all week, we will just need to have it removed for the weekend, and then re-access on Monday.

I gave Carl his shot (GM-CSF) when we got there, and his Tylenol, so we were able to start the Antibodies an hour after that. Tomorrow I will give him his shot back in our room before we go, as I have a supply of GM now, and that will cut an extra hour off of the whole process.

He seemed to handle the pain much better, although I don't think it was actually less pain. His heart rate stayed below 170, and that made it better for me:) I talked to one of the Docs about yesterdays experience. What she had to say is that the fist two days are usually the worst, it is a trial to see how they do, and what works for pain. I don't think he had any more pain meds than yesterday, but the whole thing did go better.

They say that the kids don't remember the pain that they experience, as they never refuse to come back the next day. I am not completely sure however, Carl asked for a "Pad" (warm pack for his tummy) even before the pain started. He must have remembered something about needing one??? He is such an inspiration to me!!!! What a little Doll!!! Today I bawled again, but because I am so proud of him!!! He is such a Good little Guy!!!!!

Last night, Carl did wake up from his nap energetic!!! We went down to the Cinco De Mayo party!!! They had a mexican band playing tunes, and they served a Great supper!!! Carl got a Sombraro Hat!!! It kind of reminded me of when all of us ate supper in that Mexican Restaurant in Arkansas:) Carl got his picture taken with his Hat on. I am going to try to go down and scan it later, to add to the Website!!! Carl even danced a little, and helped to break open a Pinata!!! It was very cute, he scooped up as much candy and stuff that he could carry, and rolled it up in the bottom of his shirt to haul back to our room!!! :):):)

We were very excited to hear some Great news at the clinic today!!! One of Christi's tests (I think it was a bone chip biopsy?) came back clear!!!!! Angela is very Excited about the report!!! I/we will have to read her next update to get the full details!!! www.christithomas.com

This made me feel very good today!!! It made me realize that we are doing this for a purpose, this was proof to me that it had made a difference in a very sick little girl. It was a little improvement in Christi, but it was positive!!!!! I know that Carl's situation is very different, but the antibodies serve a purpose for all of these children, which is to kill cancer cells!!! Whether dealing with refractive disease, or cells hiding in a NED status child, just waiting to relapse at any moment. I pray for Christi, and Jay who is also trying to get clear, and all of the children at MSKCC, fighting this horrible monster!!!!! Please keep them all in your Prayers too!!!

"Jesus took him by the hand and lifted him up, and he was able to stand."
-Mark 9:27

Love & Prayers

Kelly


Monday, May 5, 2003 2:20 PM CDT

Good Afternoon on this Monday!!!

Carl and I are back in our room at "The Donald House"

As I type, Carl is sleeping off the effects of the heavy sedation he was under today for the Antibodies.

We made it through the first day. I must admit though, I am not excited to go back and do this again tomorrow, or the rest of the week, and next week too:( Etc. Etc. Ect.

Without the Strength from the Lord above, and Strongest
Love for your child, one could never witness such an UGLY, SCARRY, experience your child must endure, so that he may live and be Cancer Free.

Carl started out very good, he was watching Dora, and enjoying a sucker that another little Cancer fighter's sibling brought in to him. The nurse told me about when he would start to experience pain. He was doing soo good, I thought boy this isn't that bad. Then when it hit, it hit. Carl's heart rate was up over 200. That was the scarry part for me. The ugly part, was seeing his eyes, and little face during the pain. It only lasted for about ten minutes, but it sure felt like more than that. In an attempt to not hurt, he would try to hold his breath, which I'm sure didn't help the high heart rate. After that tough part, Carl just slept. We waited til his heart rate came down, and he was alert. Carl drank alot of juice too, which another Mom told me he would probably do, as they are very thirsty following treatment.

I managed to get through the whole deal without panicking or bawling, I saved the bawling for when we got back to our room. After Carl fell asleep.

We stopped at the Grocery store on the way back, and picked up some juice, and (Prite) Sprite for later. I have heard that after some rest, these kids are up and running around again by the evening!! Tonight they are having a Cinco de Mayo cellebration here at the "Donald House" I will bring Carl down to that if he seems up to it later. If not, we will be getting to bed early tonight.

Thank you for all of your Prayers!!!!! I would not have the strength to handle this otherwise!!!!! I can feel comfort in knowing that you are all behind us 100n Spirit!!!!! We are not alone with this!!!!!

God Bless All of you!!!!!

The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.
Deuteronomy 31:8

Love & Prayers

Kelly


Sunday, May 4, 2003 5:07 PM CDT

Hello this Sunday evening!!!!!

Happy Birthday to Michael Weilage!!! We hope you enjoyed your Birthday today, and got to Cellebrate this weekend a little!!!!!

Back at the NY "Donald House"

Room No. 706

Phone No. 212-639-0706

We are very lucky to have gotten a room right next door to our friends Virginia & Jay!!!!!

Our room is a little smaller, but I actually like it alot!!! It is on the other side of the hall from our last two rooms, and our view is very different:) Our window opens up to a terrace on this floor!!! There are a couple of potted trees right ouside our window too, It helps to block the view of buildings from every angle.

It feels SOOO wonderful to finally be here. It wasn't a bad day of travel, but it is aways so exhausting, expecially when doing it by yourself. Carl was very good, and slept through most of the flight:) The flight was delayed due to some weather in Newark, but when we got here, it was just Beautiful!!!!

Each time we come to NY, I think it gets more and more pretty!! The tulips on Park Ave are breathtaking!!! The trees that are along the boulevards are all green now!!! It is amazing how the looks can change in a week and a half.

The beds in our room have new pillow top mattress's on them!!! Let me tell you I cannot wait to try it out tonight!!! I think Carl and I will be turning in very early tonight, we have a Big day ahead of us tomorrow.

Please keep Carl in mind tomorrow, and say a few extra little Prayers for him during the day. Tomorrow begins the first round of 3F8 Antibodies. This will be something new to Carl's system, and an unknown, as to how he will react to it. It can be more difficult on the child the first few times that they get Antibodies. They never get easy, but we will know later, how Carl handles the treatments.

Please keep Jay, Christi, and Daniel all in your Prayers this week too, as they will all be on beds next to us in the clinic getting Antibodies as well. These kids are all Awsome Fighters!!! May God Bless all of the children fighting this dreadful disease.

It is 5:30pm Morton Time:) I just bet all of the Robinson's are gathered around Grandma & Grandpa's table trying to decide what to do for supper tonight!!! We miss all of you guys back home, we enjoyed seeing everybody last night!!! We Love You all so much!!!!!

We constantly pray for you, that our God may count you worthy of his calling, and that by his power he may fulfill every good purpose of yours and every act prompted by your faith.
2 Thessalonians 1:1

Love & Prayers

Kelly & Carl


Saturday, May 3, 2003 10:25 AM CDT

Good Morning to All!!!!!

I added a couple of new photos:) The first on on the photo page is my new favorite:) I have a bunch of dixie cups in my kitchen, with Beautiful Flowers in them:) I Love it!!!!!

The kids are already outside having fun!!! Sydney had her little friend Hannah stay over last night:) We rented a couple of movies, and ate Pizza ~ YUM:) They enjoyed thier evening, and tolerated the little boys bugging, them very well!!!

Today we will continue to pack, and get everything ready for our trip back to NY tomorrow. We will need to leave pretty early in the morning, our flight takes off about 11:00am. We are turning into expert packers, if nothing else. We learn each time, just what we will need, and how to condense our bags.

It is a little chillier, and breezy today, we are hoping it gets nicer out, but the kids don't seem to be bothered at all. As long as its not raining, they enjoy being outside:)

Thank you for stopping by, and for keeping all of us in your Prayers!!! God Bless you All for your Kindness!!!

Their eyes see every precious thing.
-Job 8:10

Love

Kelly


Friday, May 2, 2003 9:51 AM CDT

Good Morning and Happy Friday!!!!!

Happy Belated Birthday to Jordan Johnson who cellebrated his Birthday yesterday!!!!! Sorry we missed it but hope you had a Very Special Day!!! Much Love to you and your whole Family!!!


Another Beautiful Sunshine Day!!!!!

I can't believe our week has gone by this fast:( We will be flying out to NY on Sunday to begin Carl's Antibody treatments on Monday. We started his GMCSF shots Wednesday, to boost his white count, which will play an important roll in his treamtments. It has been a while since I had to do this:( The last two days we did it after Carl was awake for awhile. This morning (he is still sleeping) I managed to give him the shot, (just a little complaining) and he went right back to sleep within five seconds:) It sounds cruel but it worked better, and he probably will think it was only in his sleep:) While he was in the hospital, he was so used to being messed around with in his sleep (diaper changes, IV pole beeping with line kinked off etc.) He never lost a wink of sleep:)

The boys had a fun filled day yesterday. They were so hilarious to watch, they spent most of the day outside, trying to figure out a "good jump" for Sam to drive his bike off of!! Carl was usually just Sam's accomplice, holding boards so they would not collapse on Sam when he tried his stunts. I can't wait to see what the two of them conjure up for today!!!!!

BIG 4-H NEWS..... The Birch Coulee 4-H Group took First Place for the Second year with thier "Share The Fun" skit for this areas competition!!!!! The theme this year was "4-H is Extreme Fun" And they sure had Fun!!! They all did such a Great job!!! Each of thier costumes was very Cute!!!!! Thier club has such Outstanding Confidence!!!!! With this win, they are invited to perform thier number at the Minnesota State Fair this summer!!!!! Way to Go Birch Coulee!!!!!!

Bryan's Softball Update: Last night the Hawks kicked butt 17-4 against Wayzata/Mntka Next they will meet South Suburban on Tuesday May 6th Go Bryan!!!!!

Have a Fantastic Friday!!!!! Take time to stop and watch your kids Play!!!!! They are only little for a short time:)

Children's children are a crown to the aged, and parents are the pride of thier children.
Proverbs 17:6

Love & Happiness

Kelly


Thursday, May 1, 2003 7:00 AM CDT

Happy May Day to You All!!!!!

I am very Excited that the sun is shining, and Hopeful that it will be nice and warm today too!!!

Does anyone know the legend of May day??? All I remember is something to do with a basket of flowers, and kisses??? Maybe someone can chime in, and set us all straight:)

Yesterday, Carl and I visited Grandpa Greer at the Redwood Hospital. He is in the same transition room that Grandma Phyllis was in after her Hip surgery:) Grandpa is doing So well!!! We watched him walk a little, and do some of his therapy. He looked very good. I'm So proud of Dad for all of his difficult accomplishments with these surgeries he has been through!!! Dad is the most determined man I know!!! I thought he would be needing to go to Woodale for a few weeks before making the transition to home, but we found out yesterday that he will be able to go right home, and as early as the middle of next week!!!

Another Surprise for us yesterday!!!!! Carl received a Big Box, from none other than his favorite buddy "SHREK" :):) What a very Big surprise!!!!! Carl was napping when the box arrived, so I peeked inside:) When Carl got up, I told him about his Box of Goods, and Who it was from!!!!! He had an ear to ear grin that was Just Priceless!!!!! You see, Uncle Clair had contacted "Dream Works" a while back. He sent them a photo of Carl with his Shrek that he always hauls along everywhere:) Clair introduced himself, and Carl, and explained that Carl was currently at Memorial Hospital in NY. Clair wanted to share with the makers of Shrek, how thier talents have made an impact on a sick little boy!!! After all, we have spent many days Impatient watching Carl's "Shrek" Movie, as many as five times!!!!! Clair's letter to "Dream works" was followed by a couple of more back and forth with thier Webmaster, who asked permission to have Carl's home address:) The box, included a collection of "Dream Works" DVD'S, some Shrek, and Donkey Figures, some adorable Shrek ears (Watch for photo of Carl in these) some Shrek refrigerator magnets, a Gingerbread Man with a removable leg:) and an audographed letter to Carl from Shrek!!!!! Let me tell you "Shrek" made one little boy very Happy!!!!!

Have a Happy May Day!!!

Love

Kelly


Wednesday, April 30, 2003 7:50 AM CDT

Hello to all this Wednesday!!!!!

HAPPY BIRTHDAY to Auntie Jill!!!!!! We Love you very Much, and Hope you have a Special Day!!!!!

Please stop by the Guestbook, and leave a note Wishing Jill a Happy Birthday!!!!!

We have been very fortunate to have Auntie Jill to help us many times through the course of Carl's treatments. She was there in Rochester for us, and Was able to spend a week in NY with Carl and I before his Transplant. (since she doesn't have a real job) just kidding hehee. This picture is in NY, Carl was So full of energy that week:) His favorite activity was jumping on Auntie Jill:)

Auntie Jill's favorite memory of Carl is when she would call him on the phone:) He would say "Where You At" then he would say "I'm at the Donald House" :):):)

An Update on the Humboldt Hawks Baseball: Brayn got the first run ever, of his Basball career Monday night!!!! The Hawks cleaned house on Moundsview, 13-0 Way to Go Bryan!!!! The Hawks take on Wayzata this coming Thursday, then Challenge White Bear Lake, Monday May 7th.

Please Keep Christi and Jay in your Prayers. Christi is on her second round of Beta Glucan/3F8 Antibodies, and Jay is starting his first round this week. I talked to Virginia, Jay's Mom last night!!! She is such a neat person, We feel very blessed to have "Extended Family" to return to in NY.

I have added a link on the bottom for Carl's May feature of "Fight for a Cure" be sure to check it out!!!

If you missed the new Picture of Carl in the Photo's be sure to check that out!!! We are having Photo buttons made for the "Relay for Life" with "Cancer Free in 2003" on them!!! Let me know what you think of the picture:)

Our count is coming up to 50,000 can you believe that!!! We are curious who ends up logging on to Carl's website being the 50,000th person!!! Let us know who you are, when that happens!!!

Think "SUNSHINE" Maybe it will RETURN!!!!

Have a Fun Day!!!!!

Accept our praise, O Lord, for all your gloruous power. We will write songs to celebrate your mighty acts!
Psaml 21:13

Love

Kelly


Tuesday, April 29, 2003 6:19 PM CDT

Happy Birthday Auntie Jill ~ Wednesday April 30th!!!!! This Picture was taken in NY, right before Carl's transplant!!! This was an everyday activity:) Jumping on Auntie Jill!!!:):) We Love you and Hope your Day is very Special!!!!!





Good Evening to Everybody!!!!!

Happy Birthday to Jeffrey Weilage!!!!! Hope you enjoy your Day!!!!! We all Love you very much:)

What a miserable day today has been. Our Sunshine is gone, hopefully only temporarily. It sure can change your mood, when the sun in hiding.

We have been working on the planning of T-shirts and Photo buttons for our teams theme this year "Carl's Commandos ~ Fighting for a Cure" Robyn and Kevin are ordering the T-shirts through the same company that did our "Robinson" T-shirt for Grandma and Grandpa's 60th Anniversary. I talked to Patty Wolter today!!! Tim and Patty make Photo Buttons!!! I emailed her a picture of Carl that I think would be really cute on the button. I have added the Picture to the Photo section, you will have to go check it out and tell me what you think!!! On the button I was thinking of "Carl Robinson" on the Top, then "Cancer Free in 2003" on the bottom. In the Picture, Carl is holding up a 2 and a 3 with his fingers, for (2003)????? I think it will work:) What do you all think?????

Tom just left for a meeting, and the kids are all rolling around wrestling on the floor. Carl sure enjoys when Sydney and Sam get home from school. The first thing he asked this morning was, "Where is Sydney & Sam" then when I told him they were at school, he started crying:(

Have a Great Evening!!!!!

God Bless

Kelly


Monday, April 28, 2003 11:46 AM CDT

Hello this Sunny Monday!!!!!

We hope you all enjoyed your weekend!!! We did here:)

Carl is feeling very well, and has been eating so Good!!! He has had two breakfasts and two lunch's already. He will be in Great shape when we start Antibodies a week from today in NY!!!

Tom has been busy in the fields, Tis the Season. The Kidney Stone Blast was successful!!! He will need to go back in a couple of weeks for a recheck, and will hopefully find out about future prevention. I have been trying to get a little of everything done before our week is over and we need to leave again. Carl is lonesome without Sam here during the day. He thinks that he should stay home from school, and play!!! Sam would rather run and play at home too, but he does Love school, and it has been so good for him!!! He is ready for Kindergarden!!!

Sydney is getting ready for the school year to be done, she will be going to Costa Rica with her Dad, and all of his family for a vacation!!! What a lucky Girl!!!!!

We hope to get all of the kids to NY for one of our Summer trips, to do some of the fun sight-seeing things that we have on our list. There really is alot to do in NY. There was a poster on the wall at the Franklin Fire Hall. We were there yesterday to practice Sydney's, 4-H "Share the fun" skit, that they will be performing in Olivia on Thursday. Carl spotted the poster, and yelled out "Look the Statue of Liberty" I had to laugh:) Only three, but he knows what that is:)

Thanks to everyone for checking in on us daily!!!!! We are glad you enjoy following Carl's progress, and very delighted that we can report such Happy News!!!!! Your Prayers are Always Appreciated!!! We count on you for that!!!

Please remember in your Prayers, all of our friends that are also in this battle with Cancer. They and thier Parents along with our family are all members of a club, nobody wanted to join. But the "POWER OF PRAYER" helps to lighten the load, and bring comfort and healing.

It's My Prayer

It's my Prayer
To be filled
To overflowing,
That I may be spilled
Upon broken, hurting people everywhere-
It's my Prayer

It's my Joy, Lord,
To be your humble servant
To those who are in need
Let me be the Loving hand that you employ
It's my Joy.

Glen Baxley and Michael Beaman

Have A Great Day!!!!

Love

Kelly


Saturday, April 26, 2003 11:50 AM CDT

Happy Birthday to Sarah (Rah Rah) Robinson


We Hope you have a Beautiful Day!!!!!!


We All Love You!!!!!





Wishing Everyone a very nice Day!!!!! We are Enjoying our time at home:) It is Warm, and Sunshiney:) A Perfect Day!!!

Carl is spending the night at Rah Rah's to Help her Cellebrate her Birthday!!!!! He is very Excited about this, as he has not had a chance to sleep over at his cousins as much as Sydney and Sam do:)

Have a Beautiful Day!!!!!

Love

Kelly & Tom

Bryan, Sydney

Sam & Carl:)


Friday, April 25, 2003 8:21 AM CDT

Good Morning to everyone, and Happy Friday to all!!!

We are very Happy to say that we are Home on the Farm!!!!!

It is such a good feeling, despite the delay in Carl's treatment. I do believe this will be for the best. It will give Carl a chance to feel better from this virus, before starting with the Antibodies, as they can cause pain of thier own, and he doesn't need the two together. This morning Carl called out to me from his bed "Mom I pooped" I was very pleased to see that it was the best looking poop I have seen in over a week :)!!!!! I Pray that he is getting better already!!!!!

Carl is the featured child for "Fight for a Cure" for the month of May!!!!! You may go to this website to check it out, LeAnn did a very nice job of featuring Carl!!!!!

http://www.geocities.com/childofthemonth/MayCarl.html

if you have trouble getting into it, remember to Cap the M for May, and the C for Carl. It took me five trys to get into it myself:( I sent LeAnn a Collage that Jenny Robinson designed for Carl!!! She did such a Great Job of it, I was Glad LeAnn could use it on the Feature!!! Also my favorite, Carl's "Heart On Hand" is included!!!!!

This morning, as I type, Tom is up in Willmar having his Kidney Stones Blasted. Grandma Phyllis and the Boys and I will be driving up after a little while to pick Tom up. We are very glad he is getting this done, as he had about three pretty large stones that could start moving at any time:( We were glad they stayed put during our weekend in NY, as that is where he has had them act up the last two times. After this, Tom may be put on some medication to help prevent his body from making them. Also he was told to modify his diet of protien (Red Meat) but that is easier said than done when you enjoy Meat and Potatoes!!!

An update on my Dad, and Carl's Grandpa Greer. Dad is doing very well after his knee replacement in Mankato!!! He will be spending a couple of weeks in the Redwood Hospital in a swing bed. It turns out that he is in the same room that Grandma Phyllis was in after her Hip surgery. Then if Dad is not ready to go back home from there, he may go to Woodale for a few weeks to continue recovery, and therapy. But he is doing very Good so far!!! I have not told Dad yet that we are home, he will be Happy to see us this soon!!!

This weekend will be very nice for us here!!!!! Auntie Jill with Nick & Kiri, will be bringing Bryan along too and coming for the weekend!!! It will be fun to see all of them, and for Bryan to spend a couple of days with the family again!!!!! My Sister Holly's oldest son Michael will be going to Prom tomorrow night:) They are trying to get a ticket for me, maybe an extra one for Bryan too, to go to the Grand March!!!!! I am very excited for all of them, this is such a huge event, that all of us parents look forward to witnessing of our children!!!!!

Have a Wonderful Friday!!!!! Thank you all for your encouraging notes, happy Thoughts and as always your steady faithful Prayers!!!!! We could not do this without all of your Love and Support!!!!!!! God Bless You All:)

I want to know Christ and the power of his resurrection and the fellowship of sharing in his sufferings, becoming like him in his death, and so, somehow, to attain to the resurrection from the dead.
Not that I have already obtained all this, or have already been made perfect, but I press on to take hold of that for which Christ Jesus took hold of me. Brothers, I do not consider myself yet to have taken hold of it. But one thing I do:
Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.
Philippians 3:10-14

Love

Kelly


Thursday, April 24, 2003 7:35 AM CDT

Good Morning to everyone!!!!!

Today Carl and I will be flying back home. Due to the results "apparently" not being in on the bone marrow test, (even though they should have been back last night, or today Hmmmmmmmm) the GMCSF shots could not be started on Wednesday??, thus keeping on schedule for the Antibodies to begin Monday. So the schedule of treatment will be put back for one week. We will begin the shots at home next Wednesday, fly back to NY on Sunday May 4th, then on Monday the 5th, begin the Antibodies. I will not go into lengthly details of my frustration with this deal, it is just not worth it! I can only say this, things happen for a reason. I look at this as "A Devine Intervention for a Greater Purpose" I don't know where that came from but it sounds Good!!!

In the furture you may refer to Carl and I as:

(Pingpong Ball 1) & (Pingpong Ball 2)

We are packing and shuttling off to the airport about 12:30
for a 3:30pm flight. We should arrive in MSP about 5:30pm We should be back to the farm by 8:30 or so:)

Have a Great Day!!!!!!


We Love you All!!!!!


Kelly & Carl


Wednesday, April 23, 2003 10:20 AM CDT

Good Morning everyone!!!

We are watching "Dora" for the second time this morning, waiting to go to the PDH for Carl's MIBG Scan. His scan is not scheduled until about 2:30, and he cannot eat or drink anything til after, because of the sedation. Let me tell you we have been having WAR in our room since we got up:( How do you reason with a three year old about this subject. I have tried every tactic, including promising a trip to the store for a little present after our Appt. I don't think it is a matter of being hungry and thirsty, as much as a matter that he is told that he can't eat or drink, and there is no choice in the matter!!!

Our day will be better as soon as we are done with the Scan!!! I sure wish they would plan this out a little better with these little kids. It can make for some very stressful hours for the parents. Carl continues to have symptoms of that stomach virus. We are going through many diapers and wipes, as it is a week now since it started. I will be bringing in another stool sample to be checked today. The tube feeds are not going as well either. I cannot run them at our normal rate of 80. He tolerates it for a couple of hours, then has tummy pains and vommits. So If we cut down on the rate, it seems to go better. Carl is down to about 30 pounds now. He has lost a couple of pounds since last week. I Pray that this virus is cleared up fast, and Carl is back to feeling better soon.

Carl will begin the 3F8 Antibodies on Monday. He will get a shot of GMCSF today and once a day through Sunday. The shot is a (Growth Stimulating Factor) for White blood cells. This will boost his white cell count very high, but not to exceed 20,000. The white blood cells will play an important roll in the treatment with the 3F8's. The antibodies attach a GD2 marker to the NB cells. Then the white blood cells go after those marked cells to attack and kill them. The increased white count helps with the success of this process.

Dr Kushner said to me yesterday that he had been emailing some of Carl's information back to Dr. Anderson at Mayo. He said that he was referring to Carl with the Initials CR for Carl Robinson. He said that CR, also stands for
"Complete Remission" !!!!!! We Pray this is true. The Initial Bone Marrow results are done and are Good, but they are still waiting for the rest of the test results.

While we were in the waiting room yesterday, I called up to 5th floor to see if our Sweet little Amelia was there. She was, and she and RaeAnn one of the other Angels on 5th floor came down to visit Carl. It was fun to see them again!!! We really miss all of thier smiling faces each day. Carl was not up to his normal active busy self yesterday, so the girls did not see him as they knew him:( We will call them again when Carl is feeling better!!! He did enjoy seeing them again though!!! We really have been blessed with such Sweet, Kind, Caring medical staff to work with Carl!!! Another of Carl's sweet nurses Gail stopped by the waiting room yesterday to see Carl too:) She will be doing the sedation today before Carl's procedure:) If you guys are reading this, THANKS!! You Are All So Great!!

We wish everyone a very Nice Day!!!!!

Thanks for checking in with us, and for your Prayers!!!!! They are keeping us going:)

"I Love those who Love me, and those who seek me diligently find me."
Proverbs 8:17

Love

Kelly & Carl


Monday, April 21, 2003 6:30 PM CDT

Hello this Monday Evening!!!!!

We have had a very busy day today. Carl started out with an Appt. with Dr. Kushner, then a Bone Marrow Aspriation. He then went from there, under sedation, to the Radiation Simulation area. In simulation, a mold was made of Carl's body. It is kind of like a cast, that he will lay in during radiation. This will keep his body in the exact same position, each day of radiation, so that the areas will be radiated with pinpoint accuracy, as to not radiate too much, or too little. He also has some tiny pin point (tatoo's) on his head in the places that will be radiated there as well. They really seem to go to extreme measures to insure that the radiation being done is perfect. Carl will not begin radiation until the week of May 11th. They just wanted to get this molding done, since he was already under sedation this morning for the first procedure.

Tomorrow Carl will see Dr. Kushner again, then have an injection for the MIBG scan which is scheduled for Wednesday. Then I believe we will be pretty much done in the clinic for the week. Next Monday will be the first round of Antibodies. They will be given Monday through Friday for two weeks. We are both anxious to get started on the antibodies, and very apprehensive. We have been hearing more and more about the children being in such terrible pain for a period of time during each treatment. What actually happens is that the antibodies attach a marker to any NB cells that may be present. Then the white blood cells find these NB cancer cells, and kill them. The markers also attach themselves to the nerve cells, which send a signal of pain to the brain. During the treatments, the children are given Morphine and several other pain meds (Narcotics) if needed for the pain. I have heard that the pain is for a short time, maybe about ten minutes, but it is very intense for the child. After treatment, the child is quite tired and may spend the evening sleeping for a couple of hours. We have heard that each child has a different experience with the pain, and how they react during and after the treatments. We are fully aware of the horror stories, but we also feel that there is nothing better available to treat a child, that is as hopeful as the antibodies, to keep a NB child in NED (No Evidence of Disease) and to prevent a relapse. These antibodies are also being used to treat children that have not reached the NED status, it is proving to be very successful in clearing bone marrow, when chemo alone did not work.

Tom, Sydney & Sam are on a plane home right now:( We already miss them terribly. We had a very enjoyable Easter weekend together!!! But as always, it flew by too fast. Sam was crying as he was leaving, and it always breaks my heart. Both the kids Loved there time here!!! I will try to get back home with them in a couple of weeks, then Tom plans on staying for the remainder of Carl's treatment and then the two of them will come home together. After this four & a half week stretch, we will get to go home for about a week and a half, then back to NY for two more weeks of antibody therapy. After that things should get a little eastier, and the trips may even be further between:)

Carl is very achey tonight, and not feeling very well. When we were in Rochester, he started to get the diarreah. He has had it ever since. We found out that he has an intestinal virus, that could take up to two weeks to clear. Today, jokingly, Dr. Kushner said to Carl "We let you go home for a couple of weeks, and you get this virus, and herpes 1" Whats up with that???? :):):)
Speaking of the herpes 1, the spot on his face is just about gone!!! Also Dr. Kushner asked Carl how he got that on his cheek??? I said that it was probably from everyone kissing him while he was home:):):)

Wishing everyone a very nice evening!!!!!

Prayer Requests ~

For Carl to get over this pooping virus.

For Tom on Friday, as he has an appt. in Willmar to get those blasted kidney stones blasted appart. (I must be getting tired)

For all of the children here at MSKCC and everywhere fighting NB and other types of Cancer.

For our Troops as they make thier way home to thier families.

"Go in peace. The mission you are on is under the eye of the Lord."
-Judges 18:6

P.S. The Picture on the front of the web here is of Carl and Dr. Persad during Transplant. We now have the capability to add a photo to the front of the webpage!!!! If anyone has any cute pics of Carl - with hair before Cancer, I would Love to add one to his front page!!!! If any of you find one, you may email it to me, and I can save it from there, and download it to his page!!!!!

God Bless

Kelly & Carl:)


Saturday, April 19, 2003 9:30 PM CDT

"He has Risen."
Mark 16:6



Happy Easter to All!!!!!

Our Family would like to take this very Special Opportunity, to wish everyone a Most Blessed Easter!!!!!

Our Thoughts and Prayers are with all of you too, as you join your family and friends today, to Celebrate the Resurection of our Savior The Lord Jesus Christ.

We spent Christmas in the Hospital with Carl in Rochester. We refelect on that today, as we are once again away from our family and home for another very Important Holiday, Easter. We are very greatful though, that we are almost all together (minus Bryan). We are also blessed that there has been so much activity here for the kids to enjoy on this weekend away from home!!! They are having fun:)

Our family has so much to be Thankful for!!!!! We have been blessed with such a wonderful response, of Carl's chemo treatments, and a very hopeful outcome with his upcoming antibody therapy. He has been such a Happy, Energetic, Healthy little guy, and has brought so much Joy to our lives, and the lives of so many others:) We can't help but Believe that the Lord has done his work in our lives!!! We must Glorify God for his many good works!!!

Thank you for all of your Prayers!!!!!

Today a little homless woman touched our hearts. She was sitting on the sidwalk Praying, and was clearly very poor and alone. She had a little can next to her, and some of the people passing by would drop in a coin or two. We passed by, but could not help but notice her as we walked by. Sydney was lagging behind, taking a second, and third look. Then she came running up to me grabbing my arm, almost in tears. She said "Mom can we give her some money, I think she needs some money?" I looked at Syd and said, "Yes we can" so we dug out a couple of dollars, and Sydney ran back to her to give her the money. The little woman made the sign of the cross, and smiled up at Sydney, and waved to her, as she turned to come back to me. I think that made all of us feel very good:) Sydney said later that maybe this little woman was really an angel sent here from heaven:) I am very proud of her for that!!!!!

Please pray for all of the homeless, the lonley, and the sick. Remember all of the little children fighting cancer, and other illenss and thier families.

Please Pray for both my Mom and Dad. Mom is at Woodale this year alone for Easter, and Dad is in the Hosp. in Mankato, recovering from his knee surgery.

God Bless all of you

"Let us eat and celebrate; for this son of mine was dead and is alive again; he was lost and is found!'
And they began to celebrate."
-Luke 15:23-24

Love

The Robinson's


Friday, April 18, 2003 9:42 PM CDT

Happy Birthday To Uncle Chuck today!!!!! Wishes for a very nice day!!!!! Carl tried to call you to wish you Happy B-day, but must have missed you:( We will let him try again tomorrow:) We Love you and Miss you Uncle Chuck!!!!!

We are getting ready to watch the 10:00pm WB channel 11 news. The Easter Festivities were caught by about every news channel in NY!!! The WB channel, interviewed Carl:) It looked really cute, he didn't have much to say, but he managed to take the microphone away from the news girl and as always captured a few hearts:) Today Peter Boyle from "Everybody Loves Raymond" was here to color easter eggs with the kids at the Ronald McDonald House. Also Dave Cone from the NY Mets was here for the event!!! We got a few pictures with Peter Boyle, but everytime we tried to get close to Dave Cone, some news channel pulled him away for an interview. It was very fun today for the kids, they also were visited by a Huge Easter Bunny:) Sam and Carl kept standing by him, looking way up at him. They were just Amazed by this big guy:)

Tomorrow we are planning on making a trip to the Central Park Zoo, and to the Famous "Toys R Us" I would Love to go to one of the Museums, we will see how much time we have. We want to save some of the best things for when Bryan is here with all of us too!!! It sounds like the weather will be a little warmer for us tomorrow too!!!

Sam enjoyed his plane ride here!!! Tom was able to get some pictures of him with his first flight experience:) This morning when we were out walking on 1st. Ave, Sam's hand in mine, I looked down at him as he was looking around and taking in all of the sights, and sounds. He had a grin on his face the whole time:) Just yesterday when we were in Rochester, Sam said "Look, two cabs" Tom said to him "just wait til you get to NY, they have lots of cabs there:) What an adventure for a little rural farm boy, to see the Big Apple. It will be fun to hear what he tells everybody back home, about his trip:) For Carl, this has just become second nature to him. The familiar sights, sounds, lights are normal happenings on our way to and from the Clinic.

Please remember in Prayer, all of the families we have met here in NY, and in MN. For thier children fighting Cancer, and children battling other illness.

We hope you all enjoy your weekend, and find Love and Peace in you Heart, from this Blessed Holy time, The resurection of our Lord Jesus Christ!!! God Bless all of you!!!

Love

Kelly & Tom

Sydney & Sam

& Carl:)


Thursday, April 17, 2003 8:29 PM CDT

Good Evening from NY!!!!!

Our Phone no. is 1-212-639-0803
Our room no. is 803

Carl and I arrived from a Corporate Angel Flight about an hour ago. It was a very nice flight out here!!! Carl is turning into quite a little traveler:) He was able to watch some movies that he picked out, in a private little room up in the front of the cabin:) I sat up there with him, and tried to catch a little nap, but no luck there:)

Our appts. at Mayo yesterday all went very well!!! We decided to drive back home and spend the night, then drive back to Rochester early in the morning. My Dad has his Knee replacement in Mankato on Tuesday, and we wanted to see him, and Sydney was kept home from school yesterday due to a cough, so we wanted to get home and see how she was too. My Dad is doing great, his surgery was very successful, and he seems to be recovering good!!!

This morning we were planning on getting up by 3:00am and driving back to Rochester for our 8:40 Appt. with Dr. Anderson. When I looked at our clock for the first time that I can recall, it was 6:10:( OH NO WE SLEPT IN!!!!!!

Needless to say, we loaded the car with kids, and bags and took off for Rochester. We made it there by 9:15am and Carl's Appt. was just fine!!! His tests that were all done at Mayo were good, and his Mic-key button got changed over again!!! YEA!!!! NO MORE G-TUBE!!!!

The spot on Carl's face tested positive for the Herpes virus,(like a cold sore??) they felt it was a little unusual, but after transplant, anything is possible. Carl will be treated for a week with a higher dose of Acyclovir the same anti-viral that he has already been taking as a preventative. It should completly resolve itself, and it appears to be almost gone anyway.

We are hoping to get a couple of days of relaxation before Carl's busy schedule starts on Monday. Tom, Sydney, and Sam are on a flight out to join us, right now:) Thier flight left MPS at 6:20pm so they should be here in a couple of hours!!! We thought since we would have three free days here without appts. and it is the Easter weekend, that it would be nice for them to come and be with Carl and I and it would give Sam his first experience at flying, and seeing NY City:) He is sooo excited to have gotten the chance to come here:) I only wish I could have been on the plane with him, for his first flight:) I hope Tom was able to take some pictures of him:)

I saw a poster hanging on the elevator, they are having the Dad from (Everybody loves Raymond) Peter Boyle here tomorrow at noon for an Easter Party for the kids:) They will be having easter egg coloring, an easter egg hunt, Easter baskets, and a visit from the Easter Bunny:) Plus the Flight attendant on our plane, mentioned that there is an Easter Parade on 5th ave on Easter!!! That sounds like fun too!!! Im sure we will find some great things to do this weekend!!!! I am sorry that Bryan is not here with us too:( We owe him big time!!!! We plan on having Bry come out here with us after school is out, on one of our two week trips!!!!!

Yes Ann the weather sucks here today:( But it feels like just like it did when we left home today!!!! We will be thinking POSITIVE THOUGHTS for beautiful weather again!!!!! Bring on the Warm weather!!!!!!!!!! Everyone could sure use a nice warm beautiful weekend!!!! Without wind too!!!! It has been so windy at home, that makes for something else for us Minnesotans to complain about.....weatherwise:)

To the Fischer Family ~ Thank you for the Great package we got yesterday!!!! When we got home last night, it was right there to greet us!!!!! The kids Love the fish!!! And that outfit (orange of course) Will look sooo cute on Carl, I can't wait to put him in it with the sunglasses too!!!
You guys are too good to us!!!! Thanks we Love you all!!!!!

Well I suppose I have rambled enough for one night. Carl is sleeping on the bed here, he finally is tuckered out enough to go to sleep. That kid amazes me, I don't know where he gets his energy, I only wish he could share some with his tired parents!!!!!

God Bless you all!!! Thanks for keeping the Prayers coming, and for signing Carl's guestbook!!!! We Love to hear from you all, and we are always sooo thrilled to get notes from all over the world, England, Canada, from people that just stumble across our website!!!!!!

Will update more tomorrow!!!

Love & Prayers

Kelly & Carl


Wednesday, April 16, 2003 9:36 AM CDT

Good Morning from (Gonda 5 South, Mayo Clinic)

Carl is in having his hearing screening. We will then head over to St. Mary's Hosp. to do a series of CT Scans. It is comforting to be in the familiar surroundings of a place we have spent many so many hours, and to spot a familiar face now and again:)

We spent four hours at the ER here in Rochester last night. We needed to have Carl be seen, before we could bring him to the clinic, and later NY. A couple of days ago a spot appeared on Carl's cheek, by his ear. Yesterday it looked more like a reddish area, with little clear blisters? Auntie Judy took Carl into the clinic in Redwood to have it looked at. We were suspecting either Impentiago, or the dredded (shingles) that many chemo patients can break out in:( The second would be horrible, as we would need to post-pone Carl's NY treatments.

Well we needed to be sure, as Dr. Olson could not exactly say what it was. So after a few phone calls yesterday afternoon, to Dr. Kushner in NY, and Dr. Anderson in Rochester, we determined that Carl needed to be looked at prior to his appt.s today, to rule out Zoster (the chicken pox virus). We came into the ER about 7:00pm, and Carl saw about 4 doctors that were not clear about this either???

After some discussion, and review, it was determined that Carl has (Contact dermatitis) an irritation from wearing his "Mask" So this was "Parent inflicted" apparently. He was given a IV for an hour of Acyclovier (not sure how to spell it?? And a culture of one of the little blisters was taken and sent to path. We should hear back on those results by tomorrow. But today his spot looks even better than yesterday!!!! And we are using a different style of Mask on him, that does not rub in that area. It is a tie mask like the blue ones that Auntie Jill brought us in NY.

So it looks like everything will turn out ok so far with this little inconvienience. No Hospital admission (that we thought may happen, if it was Zoster) And we will be able to continue with our plans to fly out to NY on Thursday!!!

I had better go see if Tom & Carl are done now!!! I can just picture Tom walking around shaking his head, because Sam and I are no where to be found Heeheehehh!!!

Gotta Go will check back later!!!!!

Love You All

Kelly


Monday, April 14, 2003 3:27 PM CDT

Hello on this Beautiful Monday afternoon!!!!!

Check out the new pictures!!!!! Thanks Uncle Clair for helping us with re-sizing the digital photos!!! It sure helps when you know what you are doing:)

Uncle Tom & Auntie Judy are here today, and tomorrow!!! Carl has been keeping them very busy:) They were outside for quite awhile, but they decided to come in, as it is very warm out, and we don't want to get Carl too overheated, or sunburned. He is not very happy about being inside:( We are trying to get him interested in watching his "Wiggles" movie. But he still would rather go outside and play!!! Especially now that Sam is not home from school yet, Carl could have first dibs on the little Skid loader:)

I just heard from Corporate Angel Network. They have a Thursday flight to NY that we could get on. Carl has his Appt.s in Rochester at Mayo on Wednesday and Thursday, so we probably will just leave from Rochester, and drive to the airport to fly out. We were hoping for a Friday, or Saturday flight, but will take this one if it is available.

We have enjoyed our time at home, but it sure seems as though it has gone by very fast. I am anxious to get this next stretch out of the way, it will be for about a month. Carl will have his bone scans, bone marrow aspiration, and MIBG scan the first part of the week, beginning on the 21st, then he will start the antibody treatments for two weeks, then complete a week and a half of radiation. Then our next trip to NY should only be for the two weeks of antibody treatments. It feels very good to be done with the transplant and talking about the antibodies. Not very long ago, it seemed like this stage of the game was so far away.

This time that we have spent at home, has given us a little bit of a preview of what it will feel like to live a normal life again!!! It sure has been what I would define as bitter/sweet. It has been nice, but most difficult to unwind, and appreciate our time back home. Fully knowing that this is only a short temorary glimpse of what we hope to have eventually. The reality that keeps us going, is knowing that continuing the treatment we have found, is the best possible chance for Carl's survival. And we must never give up!!!



"CANCER FREE 2003"



Thanks to everyone for checking in on us as you do every day!!!!! And for all of your Prayers that you dedicate to Carl and our family every day!!!!! PRAYER IS POWERFUL!!!


There is a time to scatter stones and a time to gather them, a time to embrace and a time to refrain, a time to search and a time to give up, a time to keep and a time to throw away, a time to tear and a time to mend, a time to be silent and a time to speak, a time to love and a time to hate, a time for war and a time for peace.
Ecclesiastes 3:5-8

Love

Kelly


Friday, April 11, 2003 5:28 PM CDT

Hello & Happy Friday!!!

What a perfectly Beautiful Day!!! I Hope our Family & Friends in NY are enjoying nice weather too!!!

Auntie Jill was here today with the boys while I worked!!! It sounds like they all had a fun day:) Carl was ready to go back home with Auntie when she was leaving, Sam too, he said that he wanted to see Nicky:) I will be working on Monday and Tuesday too, we are Sooo lucky to have these very helpful, Loving Aunties to lean on!!! Auntie Judy will be here to stay with Carl Monday & Tuesday!!!

It feels very good to get back to work and do something normal again!!! I forgot how much I enjoy it!!! One thing I realized that I have missed, is listening to music. While in NY, we never drove a car, and I have not spent that much time in a vehicle for a long time, besides riding back from the airport last week.

The kids are spending every minute possible outside!!! The trampoline is up again, as well as thier swing set. Auntie Jill and the boys washed off some of thier other outdoor toys today, but now Sam can't stay out of the water:) I just cranked the faucet closed as tight as I could get it, thinking he would never get it turned on. Well to my amazement, I just heard the water running again:) The little bugger anyway!!!!!! Oh Well, they Love the nice weather, and we do too!!! BRING ON SUMMER!!!!!

Bryan updated me on thier Softball record so far. Tuesday they won 11-1 against Anoka, then they played Robinsdale on Thursday and lost 10-0. Bryan said that they were missing two of thier best players on Thursday:( They will be off this next week, due to spring break, but will play again the following Tuesday, away, against Osseo!!!

Thanks to everyone for stopping by Carl's website to check up on all of us!!! Keep the Awsome Prayers coming, they are being heard, as Carl is doing so Wonderful!!! We really do believe that all our Prayer is Working!!! Everybodys Prayers are heard, no matter where, or who they come from!!! A very special person stopped by work this morning, and said that he says a little Prayer for Carl every once in awhile, but he doesn't think that he has very good connections up there. I don't believe that for a second, God Listens, and Loves all of us!!!!! Keep up the good work!!!!! And Thank You!!!!!

Have a Great weekend everyone!!! Get out and Enjoy this warm weather we are having, enjoy your children, your spouse, your family, your friends, your pets!!!!! You are never too old to Play!!! Have Fun!!!!!

Is any one of you in trouble? He should Pray. Is anyone Happy? Let him sing songs of praise. Is any one of you sick? He should call the elders of the church to Pray over him and anoint him with oil in the name of the Lord. And the Prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned, he will be forgiven.
James 5:13-15

Love

Kelly


Thursday, April 10, 2003 11:31 AM CDT

Hello on this Beautiful Thursday!!!

Today Is the Anniversary of Our buddy Eric Fischer, being diagnosed with Cancer. I have added some Special Pictures as a tribute to Eric, Carl's friend!!! Please check them out!!! They were of some very memorable times for our families, as we have shared many moments together during our treatments in Rochester Mn. Please visit Eric's website and read Tracy's Journal Today, Also Eric would Love it if you would sign his guestbook:)

www.caringbridge.org/ia/ericfischer

In just 4 short months, we will also experience the Anniversary of Carl being diagnosed with Cancer. Like Tracy said in her Journal, it is about Survival!!!! And these Kids are Survivors!!!!!! Real Survivors!!!!!! Our family has been truly blessed to have crossed paths with the Fischer Family when our Adventure began!!! Our lives will never be the same, both from the diagnosis of Cancer, and from the Lives we have touched, and been touched with, along the way. I can't imagine going through this past year without the Love and Support of the friends we have been Graced with meeting!!!

There is always a risk one takes when opening up your heart to a new person you meet, a risk of the outcome of accepting them into your heart as a friend. There is always a risk, and a fear of losing. When we meet other families that are also in a battle of thier lives, fighting to keep thier child alive, we even take on a greater risk. A risk of pain, that we may feel for them, with them, and through them. We are faced with reality, that you cannot hide from. A reality of what we are all inside. We need Love from eachother, and the support of eachother no matter what the outcome of our battle.

I know that our families would be there for eachother no matter what!!!! To think of what we could have missed, is a far Greater loss than a simple "fear of risk", to open our hearts to a gift of friendship given from above!!!!!

If you have any encouragement from being united with Christ, if any comfort from his love, if any fellowship with the Spirit, if any tenderness and compassion, then make my joy complete by being like-minded, having the same Love, being on in spirit and purpose. Do nothing out of selfish ambition or vain conceit, but in himility consider others better than yourselves. Each of you should look not only to your own interests, but also to the interests of others.
Philippians 2:1-4

Thanks for checking in today, and for your steady Powerful Prayers!!!!! We Love you All!!!

Kelly & Tom

Bryan, Sydney
Sam & Carl:)




Wednesday, April 9, 2003 8:34 AM CDT

Good Morning to all on this Beautiful Sunny Wednesday!!!!!

I have added two new Pictures from yesterday:) I am still having trouble adding pictures from our digital camera??? I can't seem to figure out how to make them smaller??? Maybe someone with more technical knowledge can help me out:):) Did I hear that Uncle Clair is coming this weekend???? :):)

We are enjoying our days at home while they last!!! We are due back in NY on Monday the 21st. I will try to get Carl and I another Corporate Angel Flight back. It will probably need to be for Friday, or Saturday since Sunday is Easter. With this Respitory Virus that is running rapid, it would be most beneficial to avoid large crowds at the Airport. I have Corp. Angel Network working on finding us a flight, and will hopefully know by Friday if something will be available for us.

We had another trip to the ER last night:( Once again to replace a G-tube. The new one from Friday night may have had a defective bulb on it, as it broke and the tube came out last night. It is a very simple procedure, and Carl is getting used to the routine, he even asked for prizes after the Doc was done:) Lets hope this is the last episode before we can get it changed over to the Mic-Key button next week in Rochester!!!

Yesterday Sydney, Sam and I all had dentist Appt.s I was lucky to get us all in while we were home for this stretch!! Our Sweet little Hygientist Gwen, surprised me with a Beautiful Bouquet of Tulips!!!!! They are opened up this morning and look so "Spring-ie" Thanks Gwen!!!! You all are So Wonderful there!!! We Love You all!!!

Tom has an Appt. in Willmar today to see a Urologist. We are hoping they can figure something out with his Kidney Stone problem. It seems to always happen at the worst time, the last two times were both when we were in NY. We were lucky to have Cornell Hosp. right across the street from MSKCC for Tom to go to, but they were only able to treat his pain, not resolve the problem. Hopfully he will be able to get some answers today!!

We are looking forward to Auntie Jill coming out on Thursday night!!! I will be working on Friday, Saturday, then on Monday and Tuesday of next week. We need to be careful about exposing Carl to any bugs if possible. So for a little while we will not be able to bring him to daycare. Jill will be helping us out for Friday!!! Carl is very excited to see Auntie!!! I think he is going through withdrawls from all of the attention he got at the Hosp.
So when he hears that he is getting company, he gets very fired up about it!!!!! I hope you get your rest in before you come auntie, Carl is full of Energy:)

Have a Very Nice Day all of you!!!!!

It is well with those who deal generously and lend, who conduct their affairs with justice. For the righteous will never be moved; they will be remembered forever.
Psalm 112:5-6

Love to all

Kelly & Carl


Monday, April 7, 2003 4:37 PM CDT

Good Evening to all our Family &
Friends in Mn and NY

NEW PICTURES ADDED!!!!!

We hope your weekend was a nice one!!!!!

It sounds like NY had alot of heavy rains, and the weather here was cool and breezy:( Not the best weather to be outside enjoying the spring. The kids are anxious to have us pull the trampoline out of the shed. We would like to know that we will not have any huge snowfalls first. We keep hoping we are done, but in Mn one never can tell just what will transpire from day to day with the weather. Just because it is 75 degrees one day, doesn't mean that it can't snow two feet the next and close down school. Whenever we do get one of these late ones, it is not too bad though, we know that it won't last for long:) Ok I better quit talking about it, or it will happen:(

We had a Super Weekend with everyone home together!!!!! We managed to have a little bit of excitement to go along with the mix. On Friday night when Tom was pulling in the yard with Bryan, Sam got excited and ran to the mud room. In the process, he tripped over Carl's tubing which is attached to his Mic-Key button. Well to make a long story short, we had to rush Carl into the ER at Redwood Hosp. shortly after we discoverd the incident. We were always told that if his Mic-Key button were to ever come out, we would need to act fast, as it is capable of closing up within twenty minutes:( So the ER staff fitted Carl with a new G-Tube fixture. Not the same setup, but it works for now. We will have this changed over to another Mic-Key button when we go back to Mayo next week. There is never a dull moment around here.

The Tim Orth Memorial Foundation Benefit was truly Amazing!!!!! What a very special Tribute/Legacy the Orth Family has done in Honnor of thier Son. Next year we hope to be able to take the whole family, and stay for the entire event!!! Carl did enjoy the Mascots, and wanted to take the Utah Jazz Mascot home with him!!! It was So cute to watch him interact with these fuzzy guys:) At first I thought that he would be afraid of them, but then I remembered how much he Loved the clowns that often made an appearance in the Hosp. in NY., Carl wanted to keep hanging around by them and was not afraid to touch them, poke at them or even kick them a little to get thier attention:)

Today Auntie Judy, Uncle Tom and Grandma Phyllis came out for a visit!!! Carl showed Uncle Tom his new Tractor Bank that Cousin Jenny brought him yesterday!!!! And of course he learned what to do next:) He fleeced Uncle Tom and Auntie Judy of the change they could find in thier pockets and even in thier car!!! Remember I told you that Carl is a scam artist, AAhuh!!!!!!!

Prayer Requests ~

For Christi Thomas www.christithomas.com

For Jay Barnett www.caringbridge.org/md/jaybarnett

Both need our Prayers, thier NB has not been responsive to the chemo treatments, and both are starting a new trial at MSKCC, Christi is on week two, and Jay will be starting soon.

For all the Families we have been blessed with meeting, that have children fighting Cancer and other illness.

Have a Great Evening!!!!!

Dear Friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.
Peter 4:12,13

God Bless all of you!!!!!

Kelly & Carl:)


Sunday, April 6, 2003 10:52 AM CDT

Hello everybody this is Bryan. It's been great to be together again as a family. Yesterday Carl got a chance to see crunch, G wiz and other mascots at the benifit. He told my mom that he wanted to take one of them home with him. They said it was really fun and that we would go again next year. I have not seen carl for a long time and he is very energenic and is having a good time. You always feel better when you are at home. Today he is running around and playing with toys and having a good time.

I'm going to spend some time with the family, during my Easter Break. Right now I'm playing softball for school and my first game is on Tuesday. The position I play is first base and I really enjoy Playing for Humboldt. I will give you an update on when my games are so you guy's can come to some of my games.

Thank you for, keeping Carl and our family in your prayers.

Love,Bryan, Sydney,Sam and Carl


Friday, April 4, 2003 6:38 PM CST

Hello and Happy Friday to everyone!!!!!

This weekend our Whole family will be together for the first time in over two months. Tom is on his way to pick up Bryan right now!!! He will be very pleased to see how Happy and Healthy Carl is looking:) Brayn has always worried about Carl the most. He was the most affected, by seeing Carl terribly sick, after chemo when in the Hospital with a fever. I know many times Brayn would be troubled and make himself ill, with thoughts that Carl would not pull through this. Both Bob and I have told Bryan, that if a time ever were to come, that Carl was to the point of not surviving this battle, we would be honest with him and tell him. We told Bryan that we hope and Pray that this will never happen, but if it should we would be up front with him at that time, and that he should not waste positive energy with worry.

Uncle Chucky Wucky (Carl calls him) volunteered to stay with the boys this afternoon, to give Mom a break to get out for awhile!!!!! This was a real treat, as I hardly ever go to Walmart without a couple of kids hanging out of the shopping cart:) I was able to stop by Woodale and visit with Grandma Greer for a little while too!! They were playing Bingo when I got there, so I joined in thier game:)

Tomorrow we will be taking Carl to the annual "Tim Orth Memorial Foundation Benefit" This year, Carl will be one of the recipients, that will benefit from this wonderful event!!!!! Originally we did not think that we would be home for the benefit, and able to go. But since we are, we will be coming for at least the opening ceremonies, where all of the past, and new recipients will be included!!! We thought it would be nice to bring Carl, even if only for a short time. We will be sure to have him wear a mask, as this is an occasion where there will be alot of people in an enclosed area. If Carl were not just out of transplant, and Immune Suppressed, we would Love to be able to attend the entire Event!!! Tomorrows schedule will include a Basketball Jamboree, a Silent Auction, an appearance by Crunch, the mascot from the Timberwolves. If anyone is interested in this event, It takes place in the Bird Island School Gym and the Doors open at 4:00pm also the Tim Orth Foundation has it's own website you may go to for Info.
www.timorthfoundation.org

Prayer Requests ~

For a friend and co-worker Amy Weiss, her father passed away a couple of days ago, from a Cancer relapse. Please keep Amy and her whole family in your Prayers to find Comfort, Healing, and Peace during this difficult time.

For Eric Fisher's Grandmother, who was just diagnosed with a relapse of Cancer. Keep Eric and thier whole family in your Prayers during this trying time.
www.caringbridge.org/ia/ericfischer

For all of the friends we have met along this path we were chosen to take. For the Children, and thier parents, for all of the Cancer fighters, and children fighting many other illnesses. God Bless them All

My purpose is that they may be encouraged in heart and united in Love, so that they may have the full riches of complete understanding, in order that they may know the mystery of God, Namely, Christ, in whom are hidden all the treasures of wisdom and knowledge.
Colossians 2:2-3

Wishes for a very nice evening!!!!!

Love

Kelly & Tom
Bryan, Sydney
Sam & Carl:)


Thursday, April 3, 2003 5:47 PM CST

Good Evening to all!!!!!

I am sorry for such a late update, I did get on the computer earlier this morning, I started typing, and the lights flickered a couple of times, then the power went out for a minute or so. Needless to say, once again I believe our Modem has got zapped:( I remembered later that we have the laptop!!!!! So here I am, journaling on this beloved laptop, til I get my computer up and running again.

We got home last night, pretty late. Our flight was due in Mpls about 7:15, but was not able to land due to radar troubles at the airport. So our plane was routed out towards Brainard, so that it could come in from the West. It was close to 11:30pm when we finally pulled in our driveway.

Carl enjoyed the flight, he was a little sweetie the whole way!!! There were four other passangers on the plane and two pilots. Carl was allowed to move around on the plane, and he decided to walk up to the cockpit. He went up to the front to visit with the pilots:) One of them reached back and tried to lift Carl up on his lap. I think Carl got a little scared by all of the lights up there, and started crying:( He then turned around and made a B-line back to me sobbing:( He told me that he was scared. It was really cute!!!

After we landed, I helped Carl down the steps of the plane, he headed over to a gate by the hanger. Dad, Sydney & Sam were all standing there waiting for us!!! Carl walked a little wobbly, as he just woke up (he fell asleep right before the landing) It was very precious to watch him walking toward familiar faces, they watching him approach
with a big ear to ear smile on his face!!! All he talked about the whole trip was being able to see Dad, Sissy, and Sam when we got there. He was worried though that they could not see us, because it was dark out. I told him yes they will see us, they have lots of lights at the airport!!!
The other corporate passangers all had smiles on thier faces as they saw our family all in tears hugging each other, it was a very special moment!!! I think they were very Happy to have helped us get home:)

Today we have been very busy, we visited Uncle Chuck at the Fire Hall, we stopped by to see Grandpa & Grandma Robinson, then went to see Grandpa Greer for a little while. We picked Sydney up from school, and she came walking out to the car with our Sweet Jenny Bloedow. It was great to see Jenny, with tears in her eyes, she gave me a big Hug!!! It is so wonderful to feel so much Love!!!! Then we went to the court house to get my car tabs, as we discovered they are almost expired. We then went to the Recorders office to apply for Syds passport. She will be going to Costa Rica with her Dad, and Grandpa & Grandma Bladon, and Laurie & Steve, Payton & Troy, for a summer vacation!!!! Alot of people have already volunteered to go along, if they need any more company!!!! It sounds like they will be having a Grand Time!!!

We got home, and I threw a Tator-Tot Hotdish in the oven, and we are waiting for that to get done. The kids are enjoying running around together, playing and goofing around!!! Lots of giggling going on right now:)

Thank you everyone for continuing to check in with us, and for all of your kind words!!! Thanks for keeping us all in your Prayers as well!!!

I have a special Prayer Request today, Eric Fischer's Grandma (Tracy's Mom) has been diagnosed with Cancer. Please keep Eric and all of his family in your Prayers. It is so very difficult for them to be faced with such news after experiencing such an ordeal this past year with Eric. And Eric knows first hand what it feels like to be fighting this horrible disease...All too well.
www.caringbridge.org/ia/ericfischer

Please remember in Prayer all of the children fighting NB in NY, or anywhere, and any other type of Cancer or Illness.

Turn us again to yourself, O God of Hosts. Look down on us in Joy and Love, only then shall we be saved.
Psalm 80:7

Have a Wonderful Evening!!!!

Kelly & Carl

& Family







Tuesday, April 1, 2003 4:26 PM CST

Happy April Fools Day!!!!!

Happy Birthday to Uncle Dave Gores, and Cousin Kevin White!!!!! Hope its a Great Day for you two!!! Your really not Fools you guys:) We Love you!!!!!

New Pictures Added!!!!!

Carl and I have been busy today, doing nothing:) We went out for a walk earlier, to bring a roll of film in to get developed. Then we went out again later to pick up our pictures!!!

We will do some laundry tonight, and try to get organized for our trip back home tomorrow!!! How excited we are, But I don't think it will actually sink in til when the plane touches the ground, and we see Tom, Sydney, and Sam's face!!!!!

It will be nice to come home to a clean house!!!!! Auntie Janet and Auntie Joy spent two days out at the farm cleaning from top to bottom. They washed down walls, and laundered curtains, something that we have not been able to get done for a long time. Thank You So Much You Two!!!! It is very Much Appreciated, more than you will ever know!!!

Last night we did get the opportunity to meet Allison & Jerry Barnes, and thier little daughter Morgan!!!!! They are very kind people, it was nice visiting with them. Morgan has just got done with her Transplant, they have traveled here from S.C. to meet with the NB team here about starting the antibodies too.

Tomorrow we will meet with a Dr. Wagman to discuss Radiation, when we come back on our next trip with Carl. From what I understand, the radiation will be done twice a day for about a week and a half. All of the areas that the NB cells had spread to, will receive radiation.

Thank You for taking the time to check in on Carl, and for all of your continued support and Prayer!!!!! We have come a long way on this road, and we still have many miles to cover. If it were not for all of the help, concern, and Love, we have been graced with, we would not have the strength we do today, or the courage to look forward!!! Thank You all from the bottom of our Hearts!!!!!

We Love You All!!!!!

P.S. Dear Amelia~ Carl has taken up sleeping with that little Ducky that you gave him:) Which is really sweet, except whenever he awakens, and has lost track of it, he wakes me up to help locate it:) It really has been a comfort to him, it fits right in his little hand, and he holds it next to his cheek when he is sleeping:)

Love

Kelly & Carl:)


Monday, March 31, 2003 2:12 PM CST

Hello on this Monday Afternoon!!!!!

Day +20

Carl's Counts ~

wbc 6.8
hgb 11.9
plts 97
anc 3.4

Carl's count are Great!!!!! We just returned from the PDH, no need for transfusions, or a gcsf shot!!! What a little trooper!!! Carl was Happy to go to the clinic today, he was excited to see Gail again, he has been missing all of the Sweet Nurses attention that he got steadily in the Hosp.!!! And everyone was just as thrilled to see Carl today, and how well he is doing, and looking!!!

We will return to the clinic on Wednesday for an appt. with Radiation. They will see Carl, and discuss the radiation that will happen on our next trip back to MSKCC. I talked to Dr. Kushner about Carl's upcoming schedule. We will come back on April 21st, to begin retesting/rescanning. The antibodies will come next, for about two weeks, then the radiation will follow, and take about a week and a half. So our next trip will involve about 4 1/2 weeks. We will be able to go back home for a week and a half, then will return again for two weeks to do the second cycle of antibodies. After that, life should begin to get easier!!! We will still make trips to continue the antibodies, but the trips will be getting further appart.

While we are home for the next three weeks, we will try to get a Heart Echo, and a Audiogram scheduled back at Mayo, along with a re-check with Dr. Anderson. It will be very fun to go back and see everyone in Rochester!!! It seems like so long since we have been there, and we do miss all our friends back there!!!!! I am So looking forward to shopping at a Target, and having a choice between two Walmarts again!!!!! Simple Pleasures that we take for granted:)

The Corporate Angel Network phoned this morning to let us know that our flight home has been rescheduled from the am to 6:00pm on Wednesday. That will almost be easier for us to get ready to go, and have our room cleaned. Tom will drive down after work with Sydney & Sam to get us. It should be a great opportunity for Sam to get a close up look at a big airplane!!! We will be flying into Holman Airport in St. Paul. It should prove to be quite an experience for Carl and I, flying home on a corporate Jet!!!

We wish you all a Nice Evening!!!!

Please continue to Pray for:

Christi Thomas www.christithomas.com
Jay Barnett www.caringbridge.org/md/jaybarnett

both will be starting a brand new trial study here at MSKCC

Keep all of the children fighting NB and any Cancer or illness in your Prayers, They are all Heros!!!!!

And their life shall be like a watered garden, and they shall never languish again.
Jeremiah 31:12

Love

Kelly & Carl:)


Friday, March 28, 2003 2:28 PM CST

Saturday 7:45pm

New Photos added:)

Happy 30th Birthday to Justin!!!!! We hope you have a Fun Celebration!!!!!

Carl and I got out for a little walk today!!! We were window browsing, and passing a childrens shoe store on 3rd Ave:) We decided to go inside, and see if they had any (Orange) shoes:) They did not have a pair:( But they did have a mechanical horse to ride on, and the store owner gave Carl 2 free rides. He then gave him a Orange Balloon on our way out the door, as well as a pair of socks Carl spotted hanging up on the wall. This kid has turned into such a scam artist, it's almost embarassing. Oh by the way the name of the store is "Little Eric" :) Speaking of Eric, go to Eric's website www.caringbridge.org/ia/ericfischer, Tracy posted a new picture of Eric with his new curly hair!!!!! Carl and I looked at Eric's picture this morning, I asked Carl what he would think if his hair comes back curly (there is a high incidence of chemo kids growing back curly hair, even if it was straight before) Carl thought about it for a couple of seconds, then he said "Ya I want Curly Orange Hair!!!!!" Can you imagine that!!! :):):)

Have a Great Evening!!!

Love to you all

Kelly & Carl

************************************************************

Hello and Happy Friday!!!!!

Day +17

Carl's Counts ~

wbc 4.2
hgb 10.6
plts 74
anc 1.7

To Amelia, Rosemary, RaeAnn, Nadia, all of the Staff on 5th floor at Memorial Hosp. God Bless you ALL!!!!!!! It took all the strength I could muster up, (God must have been holding my hand) to not burst into tears, bawling as we were saying goodbye:( and walking out of the doors. You all are the Best we Love you and will never forget the very special care and attention you all gave Carl during his admission!! As I was strolling Carl back to the "Donald House" the thought that ran through my mind (along with about every other bitter/sweet emotion possible) was that I am pretty sure that Carl would win, (If it exhisted) best/favorite little patient of the Month of March!!!! I may even be safe in saying for the Whole year!!!!! At least thats how we feel about how you all treated Carl!!!!! Im glad that you all had the chance to get to know Carl, and you all enjoyed him, as much as he enjoyed all of you!!!! We will look for you all next month when we come back to clinic!!!! We Love You All!!!!!

Wow.....What an adventure this has all turned out to be. It all started one summer day in August, and here is Spring, with Summer just around the corner again. One would never have dreamed this whole adventure up. Life is just like that, never knowing what is around the next bend. I am a better person for having experienced all that we have throughout this adventure, and I cannot say that I would really change things if I could, because I am confident that there was a reason, a plan for this adventure, that we are still very much on. I am Thankful for all of the wonderful people, we have been Graced with meeting both Medical, (At Mayo in Mn., and Sloan Kettering in NY.) and the families, that have touched our Lives, and Hearts, that we never would have known, had we not been chosen for this adventure.....


Thank you Karla, and Holly, both two wonderful Moms I was blessed with meeting, at the Rochester "Donald House" that I borrowed this from:

The Road of Life

At first, I saw God as my observer, my judge, keeping track of the things I did wrong, so as to know whether I merited heven or hell when I die.

He was out there sort of like a president. I recognized His picture when I saw it, but I really didn't know Him. But later on when I met Christ, it seemed as though life were rather like a bike ride, but it was a tandem bike, and I noticed that Christ was in the back helping me pedal. I don't know just when it was that He suggested we change places, but life has not been the same since.

When I had control, I knew the way. It was rather boring, but predictable it was the shortest distance between two points.

But when He took the lead, He knew delightful long cuts, up mountains, and through rocky places at breakneck speeds. It was all I could do to hang on!

Even though it looked like madness, He said, "Pedal!" I worried and was anxious and asked, "Where are you taking me?" He laughed and didn't answer, and I started to learn to trust. I forgot my boring life and entered into the adventure, and when I'd say, "Im scared," He'd lean back and touch my hand. I gained love, peace, acceptance and joy; gifts to take on my journey, My Lord's and mine.

And when we were off again, He said, "Give the gifts away. They're extra baggage, too much weight."

So I did, to the people we met, and I found that in giving I received, and still our burden was light.

I did not trust Him, at first, in control of my life. I thought He'd wreck it; but he knows bike secrets, knows how to make it bend to take sharp corners, knows how to jump to clear high rocks, knows how to fly to shorten, scary passages. And I'm learning to shut up and pedal in the strangest places, and I'm beginning to enjoy the view and the cool breeze on my face with my delightful constant companion, Jesus Christ.

And when I'm sure I just can't do it anymore, He just smiles and says...

"Pedal."



Love & Prayers

Kelly & Carl:)


Thursday, March 27, 2003 7:19 AM CST

Update: 4:00PM
A Beautiful afternoon here in NY!!!!!

Day +16

Carl's Counts ~

wbc 5.4
hgb 10.8
plts 69
anc 2.8

New Pictures added today!!!!!

Today Carl was ready to go, but we will wait til tomorrow to be discharged!!! He is feeling good, and enjoying his day!!! Thanks for checking in on us, we appreciate all of your constant support!!! God Bless

Kelly & Carl

**************************************************

Good Morning to everyone!!!!!

Carl is doing fine, he is actually still sleeping, and had a full, peaceful, comfortable night of sleep:)

I was just sitting here, catching up on some of our friends websites, and am in tears, as I just finished reading Angela Thomas' updates on Christi. Angela has four new journals, please go to Christi's website and read them if you have time. www.christithomas.com

Angela does such a wonderful job of journaling, she had updated about a couple of very special days thier family has spent together, and then her last two, about some very disappointing test results. I feel her pain as I can only imagine thier devistation. I do believe in the "POWER OF PRAYER" And I do believe that God is in the business of "Miracles"!!!!!

We, (ALL OF US) have NO problems in our lives of any possible comparison!!! Yes including our Family!!!!!

Don't worry about the bills, the car that just broke down, the kids fighting, the chores, the guy who just cut you off on your way to work, the rain we don't have, the snow we might get, the list goes on and on and on....... When you think about it..... Is there anything that important?????????

Please join us in Prayer for Christi and her family. Please pray the Christi's platelet count recovers quickly so that she may go into surgery. Pray that the next treatment that they pursue "CHOP" will buy some time to hopefully get that "MIRACLE" Of Saving Chrisiti's life!!!!

If you would like to leave the Thomas' a note of hope and encouragement thier email address is zzartset@bright.net
you may also find thier email address on thier website.

Thank you for all of your Faithful Prayers!!!!! You are all SO GREAT, I know I can always count on you!!!!!


If any man is thirsty, let him come to Me and drink.
He who believes in Me, as the Scripture said, "From his innermost being shall flow rivers of living water.
-John 7:37-38

God Bless

Kelly & Carl


Wednesday, March 26, 2003 1:46 PM CST

Good Afternoon to everyone!!!!

Day +15

Carl's Counts ~

wbc 11.5
hgb 10.2
plts 78
anc 7.8

Thanks for visiting us here today!!!!! We enjoy
hearing from you too:) It Brightens our Day!!!
Carl is having some discomfort from yesterdays
procedure (removal of Hicman line/place Mediport)
so he has continued on the pca pump for pain.
The TPN (IV feeds) are discontinued, and he is only
on one antibiotic still. His tube feeds are being
increased steadily, as tolerated. The Dr.s believe
Carl is ready to go home!!!!! He will leave with
very minimal oral meds, and should not require a
need for shots either:) Carl will been seen in the
PDH on Monday, and then we can go home. It looks
like Wednesday the 3rd, will be the next available
Corporate Angel Network flight that we can make.

We are looking forward to getting back home, and
spending some much deserved quality time with the
whole family together!!!!! It really feels like
we have been gone for months this trip. I'm sure
Sydney and Sam will look like they have grown a
foot!!! Dr. Kushner wants us back around the end
April. Carl will be re-scaned, and tested again,
and then begin his radiation, and antibody therapy.
I am not sure how long this next trip will be, but
after this next one, We believe it will be a
schedule of two weeks in NY, for antibodies, then
back home for three weeks, and this will continue
until a level of HAMA (from the antibodies) is
reached in Carl's blood, this could be as early as
just four rounds of antibodies. Carl will also be
starting to take Accutane, which is an oral med that
is part of the protocol, as a follow up treatment after
transplant.

We are just hanging out, waiting for Friday to be
discharged to the "Donald House" Carl has been
showing signs of boredom, and it literally driving
Mom crazy. He wants everyone that comes into the
room, to stay and play. A couple of our sweet
Nurses, came in today to just spend a few moments
with Carl, reading to him!!! He Loves all of thier
attention, and he definately is not lacking for any:)

Wishes to all for a peaceful evening!!!

Please keep Christi Thomas in your Prayers - We are
waiting to hear how things are going this week
www.christithomas.com

Please continue to Pray for Jay Barnett, Jay and
his wonderful Mom Virginia have been here in NY
for over a year. Jay is 15, and also fighting NB
www.caringbridge.org/md/jaybarnett

Please say some extra Prayers for Ron McKinley's
brother Mike, who was just diagnosed with Non-Hodgkins
Lymphoma. Thier family could use some comfort.

God Bless our Soldiers fighting in Iraq, and all of
thier families at home waiting for them.

And the secrets of his heart will be laid bare.
Corinthians 14:25

Love & Prayers

Kelly & Carl:)


Tuesday, March 25, 2003 6:30 PM CST

Good Evening to Everyone!!!!

Thanks for checking in on us faithfully!!!! And your Prayers are working wonders daily!!!!!

Day +14

Carl's Counts ~

wbc 17.8
hgb 10.8
plts 39
anc 12.4

Today has been a day of waiting.....waiting patiently.....
We waited to go for Carl's procedure.....I waited for his procedure to be done.....I waited to go back to the recovery room to see Carl.....We waited for Carl to be done socializing, so that he could be discharged from the Recovery Room to the Floor (Carl kept telling the Nurse he wanted to stay in there, and she let him). I don't know who enjoyed it more, the Nurses and all of the Recovery room staff, or Carl, visiting with everyone in there, from the Dr.s to the Nurses, the escorts, anyone he could get to visit with him:) Oh well He is feeling GREAT, and the procedure went very Good!!!!!

Carl got back to his room, and within 20 minutes he was visiting on the phone with Nick, then Auntie Janet, then Dad. Auntie Janet brought supper out to Tom & the kids, that was very thoughtful, and I'm sure they appreciated it very much!!!!

The word we are hearing, is that Friday Carl will possibly be discharged from the Hospital. However, we think that the NB team will want to see him in the clinic on Monday. I don't know when we will be able to get a flight home. It is almost too risky trying to line up a flight for Monday if we need to go to clinic too. Sometimes the appt.s can turn into a full day, including alot of waiting. I hope to get some more info tomorrow after talking to the Docs. It may end up being Tuesday before we are able to fly home.

Please continue to keep all our friends in your Prayers!!!

Christi Thomas - www.christithomas.com Please Pray for Great scan results!!!

Jay Barnett - www.caringbridge.org/md/jaybarnett Jay has been harvesting stem cells, and will be re-scanning

Sophia Marie in transplant too

Morgan Barnes is coming to NY soon for antibodies

Zane K. making a trip to Mayo this week

and all the children everywhere fighting cancer, and other illnesses.

Please remember our Servicemen fighting for our Country and for Peace!!!!! God Bless America!!!!!

Have a very Nice evening!!!!!

Here is something I found in one of my devotional books, I really liked this and wanted to share it with you:

There was a very cautious man

Who never laughed or played;
He never risked, he never tried,
He never sang or prayed.
And when he one day passed away
His insurance was denied;
For since he really never lived,
They claimed he never died!
Author Unknown

So get out there and Live, and Let Live!!!! Don't wait for Life to pass you by!!!!!

Love & Prayers

Kelly & Carl:)


Monday, March 24, 2003 12:09 AM CST

Good Afternoon on this Bright Sunny Monday!!!!!

Day +13

Carl's Counts ~

wbc 17.2
hgb 11.2
plts 46
anc 10.6

The counts are looking Great!!! Carl's high numbers are due in part to the Nupegen IV'S (stimulates white cells to grow) very much the same as when we gave Carl shots when his counts were so low following Chemo. If taken off the Nupegen, his counts would drastically drop. He will be left on this drug for a few days, and whenever we go home, we will need to give him the shots again:( I'm not sure how often, but I imagine we will be monitoring his blood levels from home to keep a close watch on everything.

The Hicman line removal procedure was postponed until tomorrow. At that same time, a Mediport will be placed. I was hoping that we would be portless from here on out, but the Docs feel it is best to keep a port for ease with any needed transfusions, blood draws, and the antibody treatments that Carl will be receiving in the following months. Dr. La Quaglia just stopped by Carl's room to explain the procedure for tomorrow, and to have a consent form signed. Dr. La quaglia is a very well know surgeon. He is famous for having his hands blessed every morning before he starts surgery.

I talked to Tracy Fischer today, and she assured us that the Mediport will be Wonderful compared to the Hicman that he has had now for seven months. Eric was very Happy to hear that Carl will be switched over to a Mediport, he said that Carl will be able to go home, and live his life like a normal little boy!!! That will be a Blessing in itself!!! We will not have to do "Site Care" every day, or flush his tubes daily. His port will only need flushing once a month. Carl will not have any tubes hanging outside of his body, so he will be able to go swimming too!!!

We will have to make some lifestyle changes at home however, due to Carl being considered "Neutropenic" (As if he has low counts, and the inability to fight infection) We will have to follow a certain diet for Carl, (And ourselves too) No coldcut meat, hotdogs, fastfood, reastraunt food, nuts, fresh fruits or veggies, undercooked meats etc.
We are basiclly on house arrest for food preparation. Carl's Immune System will be Immature for at least 100 days, that seems to be the magic number they tell us. He will need to wear a mask whenever out around people or in the public. We will need to be very careful about keeping everything germ free, and protect Carl from exposure to anything that could make him sick. Even a simple cold could be very serious, if Carl were to catch one. I guess we will be nervous wrecks for quite some time:( I am not sure, but I will need to find out about Carl's immunizations that he got as an infant. I have heard that the High Dose chemo from the transplant wipes out thier entire immune system, even previous vaccinations???

We just had a couple of Clowns in the room to perform for Carl. He is sad right now, because they are done and had to leave:( The Hosp. here is Soo Great about providing lots of entertainment for the kids. The other enjoyment Carl has to look forward to, are the volunteers that come to play with him. Also a priest, Father Steve comes by daily to visit with Carl, and to give him a blessing. Carl has started this little thing of telling Father that he needs to give Mom a blessing too. So after he blesses Carl, he blesses Mom too!!! I guess we all can use blessings whenever we can get them:)

Please continue to Pray for ~

Zane K. this week www.caringbridge.org/nd/zanek

Christi Thomas www.christithomas.com

Eric Fischer www.caringbridge.org/ia/ericfischer

Jay Barnett www.caringbridge.org/md/jaybarnett

Sophia Marie www.caringbridge.org/md/sophiamarie

All of the little children everywhere fighting for thier lives with Cancer, or any illness!!!

For Our Service Men fighting in this war, and our Country

God Bless America!!!!!!!!!!!!!!

You care for the land and watered it; you enrich it abundantly. The streams of God are filled with water to provide the people with grain, for so have you ordained it.
Psalm 65:9

Have a Blessed Day!!!

Love

Kelly & Carl:)


Sunday, March 23, 2003 10:01 AM CST

Good Morning on this Sunny Sunday!!!

Happy Birthday to Kiri McVenes today!!!! We hope you have a Wonderful Day!!!! We Love you and Miss You!!!!

Carl has a new "Quilt Of Love" that was made for him!!! I have added a link below his other Quilt link for everyone to go to and see it!!!

Day +12

Carl's Counts ~

wbc 4.5
hgb 7.8 will get transfusion today
plts 56
anc 1.8

Tom is in the air, flying home, as I type. I'm sure Sydney & Sam will be Happy to have him back home again!!! His flight should arrive around noon!!! Auntie Janet has Sydney and Sam and I just bet they will be waiting in Morton at Grandma & Granpa Robinson's for both Supper, and for Tom to get back!!! Carl and I sure do miss Supper's in Morton, it seems like such a long time since we have all been there together!!! After we get get back home, we will be ready to do Sunday Suppers again!!!

Today will be pretty uneventful here. Maybe a volunteer will come in to play with Carl for a little while, and I can get out for a walk!!! It looks like a very Beautiful day again:) Tomorrow Carl will have his Hicman removed. We still are not sure what will be replacing it?

Have a Wonderful day!!!!!

Prayer Requests ~

Christi Thomas - www.christithomas.com Please keep Christi in your Prayers as she will be having surgery this week, and is waiting for test results.

Please Keep Zane K in your Prayers, Zane is returning to Mayo for tests www.caringbridge.org/nd/zanek

Pray that Eric Fishcher's shingles are better www.caringbridge.org/ia/ericfischer

Keep the Prayers coming for Waldo (Dustin) he is home and doing pretty good!!! Jenny said he may be back to school on Monday!!!! PRAYER IS POWERFUL

Keep all the little children and thier families in your Prayers that are fighting Cancer or any illness

Pray for our Service Men fighting in War, and for our Country - May God Bless America

P.S. Thanks for your Call Ann!!! It was fun talking to You:)

Finally brothers, Whatever is True, Whatever is Noble, Whatever is Right, Whatever is Pure, Whatever is Lovely, Whatever is Admirable. If anything is Praisworthy...Think about such things. Whatever you have learned, or received from me, or seen in me...Put into practice and the God of Peace will be with you.
Philipians 4:8-9

God Bless

Kelly & Carl


Saturday, March 22, 2003 9:32 AM CST

Good Morning this Saturday!!!!!

A belated Birthday to Deb Mell, Deb Celebrated her Birthday yesterday Friday the 21st. We hope it was very SPECIAL!!!

Day +11

Carl's Counts ~

wbc 2.7
hgb 8.2
plts 76
anc 1.4 almost half way back to normal!!!!!

Another warm Beautiful morning here!!! As I walked from the "Donald House" to the Hospital, I thought to myself, What a Beautiful Spring Morning!!! The only way I could be Happier, would to be walking somewhere at home. Maybe to the barn to do chores, (Anyone notice any chubby Cats back home lately?) or a walk down the driveway to get the mail would be fun. Speaking of mail, driving around with the windows down, hauling mail would be wonderful too!!! It will feel so good to get back to a normal life for awhile!!

We started Carl's tube feeds back up last night. He did very well at a rate of 20. The normal rate is 80, so this is Great for the first time running!!! The Dr.s are starting to lower the pain meds, wean Carl off of the TPN (IV feedings) and reduce his antibiotics. The Dr.s are very pleased with Carl at this point, he is doing Fine!!!

One concern we do have, is Carl's Hicman line. When the nurse tried to flush it yesterday, it is still blocked. She tried to use thier best clot buster, but it would not flush. The Dr.s feel that this line will need to be removed. It will not happen til Monday possibly. The decision needs to be made, on what to use in place of the Hicman. One option would be to insert a Mediport, which is similar to the Hicman. A mediport is also a main line, but it is under the skin, and would need to be accessed when needed, for upcoming antibodies, or if a transfusion is required, or even for blood draws??? It sounds like the surgery (to place a mediport) could not get done on Monday. So we are not sure what will exactly happen. The Hicman may be removed on Monday, and a temporary line put in until a Mediport can be placed later in the week??? Or they may just do the removal at the same time they place the mediport??? I think we just have to wait til the Dr.s talk to the Oncology team Monday, Plus Dr. Kushner is on Vacation til Tuesday. So we will wait and see.

Tom is back at the "Donald House" mailing home some boxes of stuff. We wanted to eliminate the number of bags we both needed to travel home with. Tom will be coming home with "Auntie Joy's Big Bag" and Auntie Janet's bag. Leaving me with one bag, the Laptop, the Stroller, and Carl. I think I will be able to manage that:)

I wanted to share with you something I saw on TV last night. I was watching CNN about 11:30. They were re-caping the day, and showing all of the Demonstrations going on all over the world. There were many Anti-War demonstrations, and some Demonstrations in support of President Bush. Then they went to a picture of a lone demonstration. It was a single guy on top of a bridge, holding a huge American Flag. The flag was waving over the edge of the bridge, and this guy was just standing there holding it!!! They went on to say where this demonstration was taking place, it was in "Austin Minnesota" I felt such pride well up inside me, for my home State Minnesota!!!!

God Bless America!!!!!!

Prayer Requests ~

For Cousin Tim Wolter - We have heard that Tim is now home from the Hospital!!! Pray for Tim's steady recovery

For Jenny Robinson's friend Waldo (Dustin) Who is also now home!!! Pray for his continued recovery!!!

For Jay Barnett - our friend here in NY also fighting NB, Jay has been trying to get some stem cells harvested, and has had many many rounds of chemo trying to get clear to get to a Transplant. www.caringbridge.org/md/jaybarnett

For Christi Thomas - Our little friend at the "Donald House" Please Pray for clear scans/tests for Christi!!! www.christithomas.com

Please Keep Eric Fischer in your Prayers, Eric has come down with Shingles. Pray this gets cleared up and not any worse than it is!!! www.caringbridge.org/ia/ericfischer

Pray for Zane K. this next week will be returning to Mayo for some tests. Zane has been having trouble with high blood presure lately too. www.caringbridge.org/nd/zanek

And for all of the children here in NY and anywhere, fighting this horrible war of thier own, (Cancer) and other Illness they are all Heros, for what they have had to endure. May God Bless them All and Thier Families!!!!!

And the seed whose friut is Righteousness is sown in peace by those who make peace.
James 3:18

Love & Prayers

Kelly & Tom

& Carl:)


Friday, March 21, 2003 9:38 AM CST

Happy Friday!!!!

HAPPY FIRST DAY OF (((((((SPRING))))))))

Check out Carl's Smile Quilt- New Photos added to it!!!!!

Day +10

Carl's Counts ~

wbc 1.1 going up!!!!!
hgb 8.3
plts 19 will get a platelet transfusion today
anc 0.3 going up!!!!!

I think the counts are going up!!! ^^^^^ Thumbs Up Ann^^^^^^

What a perfect first day of Spring!!! The temp. was 59 at 9:00am!!! It is supposed to get up to 70 today YAHOO!!!

Carl is watching "Dora" again!!! and has got Dad hooked on it now:) Dad is singing along too:) Thanks Auntie Jill for the little (yes it is very little) Swiper!! Carl said "He is Cute" :)

We thought we had better go out and find Carl a couple of t-shirts since it is getting so Hot:) out. All we came to NY with was warm sweatshirts:( We can always keep little short sleeve gowns on him in the hospital, but when we are able to leave, the t-shirts may feel more comfortable. I hope the weather stays warm at home too!!!! WARM THOUGHTS!!!! BBQ'S and Bon-Fires are starting to sound Good!!!!!!

Yesterday we had a little excitement!! Carl's pump kept beeping, showing an occlusion (which means the line is twisted or blocked for some reason) the nurse came in to try to resolve the situation. She could not get one of his lines to flush. His hicman tube burst on one of the lumins. It started out like an emergency, since a broken line can be serious. But the break was down low enough, and a simple repair was done to fix the line. Then shortly after the repair, I was changing Carl's diaper, he was picking up the lumin that was repaired, and the next thing I knew the lumin was pulled out again, in Carl's hand:( So another call, to get the surgery team in again, to do a second repair. Today after 24 hours of drying, the fixed lumin should be ready to go!!!! I will cellebrate the day that line comes out for good!!!!!

Things are Great Here, For Tom & Carl & Mom too!!! We have so many things to be Thankful for. All of your Positive Energy and Powerful Prayers are being felt by all of us!!!
Yesterday I opened our mailbox at the "Donald House" and found "Mail" Thank you for the Cards, & letters!!! The pictures you colored Sam & Katherine are Great!!!!! That is so nice of you to think of Carl and send them here!!!!!

Have a Beautiful Day Everyone!!!!!

Prayer Requests ~

Christi Thomas www.christithomas.com for clear bone marrow and her upcoming surgery

Carl's Grandpa Greer - Pre-op today (I thought it was yesterday, but it is today) for upcoming knee replacement surgery

Keep Waldo in your Prayers - Sweet Jenny's Robinson's friend

For Carl's Grandma Phyllis - that she keep improving daily as she is home now from the nursing home

For Jay Barnet here on 5th floor, www.caringbridge.org/md/jaybarnett - Jay is having a stem cell harvest this week. And all the other children here at Sloan Kettering, and everywhere fighting Cancer or any illness.

Please Pray for our buddy Zane k. he has been having blood presure concerns, and has some tests this next week at Mayo www.caringbridge.org/nd/zanek

For Our Country May God Bless America!!!!!

Sow with a view to righteousness, reap in accordance with kindness; break up your fallow ground, for it is time to seek the Lord until he comes to rain righteousness on you.
Hosea 10:12

God Bless

Kelly & Tom

& Carl:)


Thursday, March 20, 2003 10:37 AM CST

Hello on this Thursday

New Photos Added!!!!!!!!

Day +9

Carl's Counts ~

wbc 0.2 maybe a start to a rise!!!!!
hbg 8.2
plts 25
anc 0.1

A better day for Tom!!!! We do believe that Tom may have given birth!!! Yea!!!!!! The pain has subsided:) Praise the Lord for many Blessings!!!!!

I just wonder if what Tom has had to endure was for a reason??? I told Tom this morning, that possibly the pain that Carl did not experience (since it seems as though Carl was spared a great deal of pain, and suffering) was difused through Tom??? Just an Idea, it makes one think sometimes. I have always told Carl when he was very sick, that I wish that I could take his pain for him. In this case maybe Tom was Carl's outlet for pain??? Poor Tomma is much better!!!!

Carl just had a volunteer come in and read a couple of books to him!!! He absolutely adores these volunteers!!! They come in to play at least once a day, which gives Tom and I a chance to get out of the room for awhile. Today the lady that came in to read to Carl, told him her name was Holly. Carl replied with "I have a friend named Holly" isn't that sweet, he was talking about his Auntie Holly:)

Carl would like to Thank the Kindergarden Class of Mrs. Schmoll at St. Mary's in Bird Island for sending all of your best artwork to Carl. Your pictures and notes are Great!!! Carl especially liked the Rainbows that included his favorite color "Orange"!!!! Thanks to Austin Weiss and all of your friends for such a wonderful gift to Carl!!!! I think the envelope arrived a couple of days ago, but we did not realize it until last night when the front desk at the "Donald House" phoned up to our room, and told us that Carl had a package waiting for him!!!!

Thank You for continuing to check for Carl's updates!!! We are so pleased with his progress during this transplant!! It is such a Joy to update with such positive energy bursting from within!!! (Tom would not agree the past few days) But he is Happy too, that Carl is so Amazing!!!!!

We will begin to gather things together and try to pack up belongings as Tom will be flying back home on Sunday. We are trying to send as much home now, so that Carl and I will be able to get back home on our own, if possible. I have registered us through "Corporate Angel Network" hoping they will be able to arrange a flight home, when we are able to go. C.A.N. is a company that arranges flights for patients with cancer, and thier parents when they need to fly to and from medical treatments. Our Dr. Kushner, just did an interview for them, that they are using on a promotional video to circulate to more corporations to educate them on exactly what they are all about, (Helping families be able to travel for medical treatment, sparing the cost) These corporate jets, have empty seats available most of the time, and treat families like royalty when riding with them!!!!!

Prayer Requests ~

That Carl continues to recover as well as he has!!!

For Christi Thomas www.christithomas.com - our little friend that is also battling NB

For Waldo (Dustin) Sweet Cousin Jenny Robinson's friend, that was in a tractor accident

Carl's Grandpa Greer - is having a pre-op today, will be having a knee replacement the first week of April

For all of the children fighting Cancer, or illness of any kind, and thier families

For our Country as we are entering into War - God Bless America!!!!!

For the Lord God is a Sun and Shield; the Lord bestows grace and favor and Glory! No good thing will he withhold from those who walk uprightly. O Lord of hosts, blessed is the man who trusts in you!
Psalm 84:11,12

God Bless!!!

Kelly & Tom

& Carl:)


Wednesday, March 19, 2003 8:36 AM CST

Good Morning this sunny Wednesday!!!



Update: 10:00am Tom is back from the Hospital. But with stone (baby) still intact UGH they did not feel this was enough of an emergency to do surgery right away:( So we are back to the square 1 with ongoing labor pains:(

****************************************

Day +8

Carl's Counts ~

wbc 0.1
hgb 8.7 will need to transfuse tomorrow
plts 36
anc 0

The little bugger is still hanging at 0 counts:( It will just take a few more days to increase, then it will take off from there!!! The Blessings are many!!!! No fevers!!! His pain is decreasing, and well managed!!! Loads of energy And Carl is Happy with positive thoughts of going home!!!

Tom is back in the ER this morning:( I was woke up by Tom sticking his head in the door here (Carl's room) he said that he was in such terrible pain, and did not sleep at all last night. So back to the ER to hopefully get this kidney stone resolved. The surgical procedure involves a ultrasound lazer scope that breaks the stone down. They compare the pain of a kidney stone, to a womans labor:( I will be glad when Tom pops this kid out!!!!!

Carl is still sleeping, he needs all his rest since he has not been napping during the day at all. So I will let the little sleeping beauty snooze, at least til the Dr.s come in and wake him up:(

I will update later when I hear more about Tom.

Have a Nice Day everybody!!!

Thanks for checking on us every day!!! And your Faithful Prayers!!!

Please keep Christi Thomas in your thoughts & prayers
www.christithomas.com

Carl's Sweet Cousin, Jenny Robinson asked if we would keep a good friend of her's in our Prayers ~ Waldo (Dustin) was in a tractor accident. Please Pray for Waldo's Speedy Recovery!!!!!

It had been planted in good soil by abundant water so that it would produce branches, bear fruit and become a splendid vine.
Ezekiel 17:8


We Love You All!!!!

Kelly & Tom

& Carl:)


Tuesday, March 18, 2003 9:37 AM CST

Good Morning!!!

New Pictures added!!!!!

Day +7

Carl'S Count's ~

wbc 0
hgb 9.2
plts 57
anc 0

Another Great night for Carl, and a Fine morning too!!! Carl has been up, bathed, site care done, and watching Blues Clues waiting for the Nurse to come in to change his pump's tubing. The coughing episodes have decreased, the last one was yesterday afternoon!!!!

Tom is resting on the couch here, still experiencing discomfort:( He went back to the "Donald House" last night and opened the window to get some air. Tom said that the town was going strong, he could hear Bagpipe music in the streets at 12:30 yet:)

Carl is getting more anxious to go home every day!!! Yesterday He started packing up toys, and keeps asking what we are going to bring home. Tom will head back home this weekend some time, or possibly Monday. We talked with Dr. Kushner a couple of days ago, about when Carl would be able to go home. At the time he was thinking around the 31st??? But I feel positive that it could be sooner??? We will have to wait and see!!!! POSITIVE ENERGY EVERYBODY!!!!!!!!!

Have a Blessed Day!!!!!!

Remember in Prayer~
Cousin Tim Wolter, for speedy recovery

For Christi Thomas www.christithomas.com

Other children in transplant- SophiaMarie

All the children fighting Cancer, that they may be given the miricle of Life

My Job was to plant the seed in your hearts, and Apollos watered it, but it was God, not we, who made it grow. The ones who do the planting or watering aren't important, but God is important because he is the one who makes the seed grow. The one who plants and the one who waters work as a team with the same purpose.
-1 Corinthians 3:6-8

Love & Prayers

Kelly & Tom

& Carl:)


Monday, March 17, 2003 2:55 PM CST

Happy St. Patrick's Day

UPDATE: 6:00pm we just had our own little St. Patricks Day Parade. About 10 guys playing bagpipes came around the halls playing:) We propped Carl up on his garbage can lid in the window of his room to look out and watch!!! He waved and blew them kisses as they went by!!!

I want to wish a Belated Happy 40th Birthday our Good Friend Karrie Bauer!!!!!! Hope you had a Cellebration!!!!!

Day +6

Carl's Counts's ~

wbc 0.1
hgb 9.8
plts 20 Got a transfusion today
anc 0

We hope you are all enjoying St. Patty's Day!!!! We just had a couple of visitors!!!! Cousins Keith and his son Justin Hauck!!! It was very fun to meet them, and Carl kept us all entertained by posing for digital pictures (he could view the results right away!!!), and he also had them taking pictures of his Kitty Pilager, and New friend Boots, from (Dora the Explorer) that they brought for him:) When we are this far away from home, it is so comforting to have family close to us here!!! Thanks for coming by, we Loved it!!!!! And THANKS for your note Ann, it was Great!!! We can't wait to meet you too!!!!!

Tom is over at Cornell Hosp. right now, seeing a Dr. for another bout of Kidney Stone trouble:( Yesterday afternoon, after we got back from our walk, Tom started to have severe pains again. He had been experiencing some discomfort for a couple of days, and knew this was coming on. Well he went over to Cornell to the ER to get seen. He had a CT scan done, which showed an 8, cm or mm ??? size kidney stone, too large to pass:( They also confirmed that he has an infection. Tom was discharged after a antibiotic IV infusion, and instructions to go to a Urologist today. They almost kept him in overnight, but decided to let him go last night. So he is back at the Hosp. to see a Dr. They squeezed him in, so we were informed that he may be waiting for awhile. They did give him some pain meds last night, so that is helping to keep him somewhat comfortable. I hope they are able to take care of this yet today. He will need to lazer procedure done at the Hosp. So hopefully by my next update, Tom will be better.

Sydney & Sam had a GREAT TIME at Auntie Jill's this weekend. I was talking to Jill earlier, and she told me about a little stunt the girls pulled on Uncle John:) The girls all went Shoppping and got these earring/navel rings that look very real. They all had them on thier navel's. When Uncle John & the boys got home, they lifted thier shirts up to show him, as Auntie Jill went on to tell him about a special they were having on body piercing. Well Uncle johnny didn't buy it for a second;) I told Jill that the girls probably had the most fun with the anticipation of the whole deal.

Our Sam has been sick off and on for a couple of weeks now too. He puked on Nick Saturday night, then again at Uncle Johns & Auntie Sheila's last night. So today Auntie Judy hauled Sam to the clinc to have him checked out. It appears to just be one of these virus's that are circulating around. Thanks again to all of you back home for all of your help with the kids while we have been gone. We just can't THANK YOU enough for all of the things you have managed for us at home!!!!! We don't know where we would be if we didn't have that constant Love and Support!!!! It bothers us So much to hear when the kids are sick, and we are not there to take care of them. But we are also releaved to know that they are cared for and LOVED and the worry is always lifted. GOD BLESS, ALL OF YOU!!!!!

Today during morning rounds, the Dr.s came in to check on Carl. They looked in his mouth, (He opened up, but not as wide as for Dr. Kushner) His mouth is already clearing up!!! (The blisters, and whitish coating) So they believe that his white count is probably on the rise!!!! They said that usually a childs mouth does not clear up until the counts recover, but Carl's mouth is!!! I have a feeling we will see a bigger rise tomorrow!!!!

Have a Great Evening!!!!!

Prayer Requests ~

Carl's counts to recover

Tom to feel better

Christi Thomas www.christithomas.com - Pray for a good Stem Cell Harvest, & good test results this week!!!

All of the children fighting Cancer, and thier families

UPDATE: Tom just got back, he was given some medication to break the stone down, and to hopefully pass it. The Dr. feels that this will disolve the stone, but it could take a few days. He will need to have the stone removed if it does not pass. They want to try this, before resorting to a surgical procedure.

Then I will give you rain in due season, and the Land shall yield her increase.
Leviticus 26:4

Love

Kelly & Tom
& Carl:)




Sunday, March 16, 2003 1:51 PM CST

Hello on a Beautiful Spring Day!!!

Day +5

Carl's Counts ~

wbc 0
hgb 9.2
plts 32
anc 0

Congratulations to Bryan & the "Humboldt Hawks" they took Thrid Place at the Mn State Highschool Adapted Hockey Tournament!!! Bryan told us that Terri Ventura (Jessie's wife) was standing by Bryan, by the bleachers, and gave him a back rub!!! Your just like your little brothers Bry:)

Carl has been up and at it since he woke thismorning!!! A volunteer came in to play, so that Tom & I could get out for awhile. We enjoyed our time away. We went up to Times Square, then walked back around the edge of Central Park and back to Memorial Hosp. When we got back to Carl's room, he was MAD that we were back already.

We see Carl improving daily!!! His white count is still at 0 however. He has not had a temp for about three days, which is remarkable, since a fever usually goes along with the low counts!!! Praise the Lord!!!!!

I would like to ask you all to Please say some of your very Powerful, Awsome Prayers for a little girl, that is our next door Neighbor at the "Donald House" her name is Christi Thomas. I knew that there was a reason why God put us right next door to each other in a house of 84 rooms. The "Thomas Team" needs our Prayers right now!!!!! If you read about Christi, (Go back a few journals) you will understand why. Christi is 5, and also has NB like Carl. However her bonemarrow has not been responding to the Chemo treatments the way Carl's did. The Thomas' came to NY from Ohio, just before we did. They came here hoping that the different chemo drugs would work on Christi's bone marrow. Christi just finished a heavey duty round of chemo, and spent over a week in the Hosp with 0 counts. (Which may be a sign that her marrow has responded to this last round!!)
The next couple of weeks will be very tough. She will start out with a Stem Cell Harvest, then re scan/test/bonemarrow asp. then Surgery, then make some decisions on what to do next???? Please Pray very hard that Chrisit's bone marrow has responded to this last round of Chemo!!!! Christi's website is:

www.christithomas.com

Thank you for your continuous Love & Support!!!!!!

To him who remembered us in our low estate and imprintd us, for His mercy and Loving-kindness endure forever.
Psalm 136:23

Blessings on this Beautiful Day!!!!

Kelly & Tom

& Carl:)



Saturday, March 15, 2003 10:19 AM CST

Good Morning This Saturday!!!

Day +4

Carl's Counts ~

wbc 0.1
hgb 7.7 will transfuse red cells today
plts 42
anc 0

Carl just may be on the come back!!! It is so hard to say that, because things can change so quickly. His wbc is higher than yesterday!!! from 0 to 0.1 not much, but it may be a sign that counts are on the rise!! The nurse explained to us that his counts may fluctuate some before they actually come back. We think that he seems to look better each day!!! Carl has started to chat more with the nurses, which is a positive sign. Next he will be asking to check in thier pockets again!!! We are very Pleased!!!

I have not heard the Results of Bryan's game last night!!! I tried to phone him, but got no answer. I am sure that they are at the Tournament, because they should play a game today, even if they lost last night. We are anxiously awaiting the results!!! GO BRYAN!!!!!!!!!!!!!!!!!!!!!!!

We have heard how warm it is out back home!!!!! And wish we were there to breath the clean, fresh, warm, spring air!!! It has warmed up here too, the temp. has been in the upper 40's Tom just said that they are talking 60's by Sunday!!!
Yesterday a volunteer came in to play with Carl for awhile so we could get out for a bit!!! We went for a walk, went to Blockbuster on first, (rented Fargo since the Hosp copy is not turning up) Ok, about accents BJ Look whos talking about having an accent:) heheeheehe Just kidding, you know what... I was just telling Tom how much fun we had when we visited ya'll in Arkansas!!! And we Love to hear you talk!!!

The Nurse just came in to take Carl's weight, she rolls this big scale into the room. Carl sat up on the edge of the couch/parent daybed and stood up and stepped right up on the scale for her!!! What a Big Boy!!!!! Right now he is laying next to me, trying to touch the keeyboard with his toes:) I do believe the "Stinker" is coming back!!!!!

Tom is calling Grandma Phyllis, to put Carl on the phone, he said that he wants to talk to her!! Grandma is doing very good at home this week. Auntie Jean will be there til tomorrow, then Auntie Judy will be coming to take her place for a couple of days. Yesterday Auntie Jean & Grandma were out and around town all day. She had a hair appt. at Joann's, they went to the clinic, and Walmart!!!

If you have not checked out Carl's Smile Quilt, there is a link on the bottom to go to it. If anyone has any pictures or graphics, or anything that you would like to have added to Carl's Quilt, you may forward it to:

Sprite@tds.net

Sprite is the gal that will put together anything we want to add!!! You don't need to have a certain size, she will format it to fit into a quilt square!!!!! I just sent her some more Pics that I wanted to have included!!!

Wishing everyone a Most Beautiful Day!!!!!

Prayer Requests ~

Father Jerry was taken off of life support yesterday, and passed away shortly after.

Cousin Tim Wolter, in the Hosp. in Mankato

For all the children suffering and batteling illness of anykind, that thier burdens be lifted, and a cure found

And other seeds fell into the good soil and as they grew up and increased, they yielded a crop and produced thirty, sixty, and a hundredfold.
Mark 4:8

Love & Prayers

Kelly






Friday, March 14, 2003 9:00 AM CST

Hello Everyone, & Happy Friday

Day +3

Carl's Counts~

wbc 0
hgb 8.3 will get red cells tomorrow
plts 13 will get a transfusion today
anc 0

Carl is laying in bed, comfortable with arms behind his head getting ready to watch Dora The Explorer!!! We had another very good night!!! One episode of wretching, but pain releaved quickly with a rescue of his pca pump. Last night Carl was started on TPN (IV nutrition) since his tube feeds have been discontinued for now. The Dr.s were very pleased this morning with Carl's progress!!!

Last night Carl was on the phone visiting with Uncle Chuck when Dr. Kushner came in for a check. He thought Carl talking on the phone was Great!!! He said that alot of kids do not feel up to talking at this point. Carl is being monitored continuously for levels of his antibiotics in his blood, and is being watched for proper levels of pain control. The Dr.s really have him in a good balance.

Tom and I have been watching movies from the child life shelves to keep occupied. We have not had this chance for a long time, so we are enjoying ourselves!!! A couple of really good movies we have seen so far are "A road to Perdition" and "The Green Mile" both with Tom Hanks and also "Shawshank Redemtion" very Excellent movies!!! Last Night we watched "The Green Mile" Oh My what a tear jerker, I didn't know it would effect me that bad. Today we are going to watch "Me Myself and Irene" we are waiting for "Fargo" to be returned to the shelves, Tom has never seen it. I told Tom it is a terrible exageration of the way Minnesotan's talk. It seems that everytime we start talking to a new person around here, we are asked where we are from??? I never thought that we had an accent, but apparently we do?? I try to be careful to say soda, instead of pop. Last night I was getting take out, and asked for a couple of posoda's :) very embarassing!!!

Uncle John, Sarah, Katherine, Sydney & Sam are heading to Isanti to Uncle Rick & Aunti Jill's for the weekend!!! They are sure to have lots of fun!!! Bryan's Adapted Floor Hockey team "Humboldt Hawks" goes to the State Tournament tonight!!! They will be playing at the Stillwater High School at 6:30pm If they win tonight, they will go on to the Championship Games tomorrow, those start at 9:30 or 10:30??? I will check for sure.

GO BRYAN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!



Some Prayer Requests for Family & Friends:

Cousin Tim Wolter - In Mankato Hospital

Jay B. In Memorial Hosp. right now too, Jay is a new friend of ours from the "Donald House" has NB and is getting better from post chemo fevers, could use some Prayers

www.caringbridge.com/md/jaybarnett

Christi Thomas - another "Donald House" neighbor, Christi has Stage IV NB too, is trying to get her bone marrow clear and could use alot of Prayers

www.christithomas.com

Please Pray for Sophia, Morgan, like I said someday we will have enough links to include all our friends!!!

Carl's Smile Quilt is done, you may check on the link below to go to see it!!! Allow a couple of minutes for the song to download. We chose this song especially for Carl:)

If you checked on Eric, Elijah, & Zane regularily, here are there websites, as I have changed Carl's links

www.caringbridge.org/ia/ericfischer
www.caringbridge.org/ia/elijahpoolman
www.caringbridge.org/nd/zanek

you can bookmark these websites, to go to them easily!!!

Thank You all for your continued Support!!!!!! Your Prayers are being answered, there is no other explanation for how Well Carl is doing!!!!! He Just Asked for come cheeto's, we will have to see, that may be pushing it a bit.

And as Always Thank You for your words of encouragement!!! We LOVE to read your notes!!!!! It fuels our Energy to go see the Wonderful messages of Love & Hope!!!!!

We Love You All!!!!!

I can do all things through Him who Strengthens me.
Philippians 4:13

God Bless

Kelly & Tom
& Carl:)


Thursday, March 13, 2003 10:07 AM CST

Hello this Thursday Morning!!!

Top o the Morning to you - Oh wait thats not til next week hehe:) We are kind of excited about being in NY for St. Patricks Day!!! This morning on my way over to the Hosp. from The "Donald House" I spotted a Bar called "Murphy's Law" and all decked out for St. Pattys Day:) How Cute!!!

Day + 2

Carl's Counts ~

wbc 0.0
hgb 9.6
plts 26
anc 0.0

Even with Carl's low counts, he is really holding his own!!! He was just watching "Dora the Explorer" the part where Swiper comes out was on, Carl was joining along saying "Swiper no Swiping" :) He did well through the night again, a couple episodes of coughing up mucous which will continue, and could get worse in the next few days:( The nurse hooked up a suction tube unit, that he can use to get the moucus out when swallowing or spitting it out, is too painful. We showed it too him, and practiced on his kitty.

Tom is down giving platelets again, it looks like Carl will need a transfusion by tomorrow. They usually transfuse when the count drops to 20. One thing I was very impressed with yesterday, the nurse told us that platelets are stored for about 5 days. If they are directed for a patient but the patient has not needed them, and the platelets are reaching that 5 day limit, the blood bank will call up and find out if the patient will be needing platelets soon because they have a directed donation that needs to be used or will be given to someone else. And alot of times they will go ahead and transfuse with the directed donation even if it is a little before they would normally transfuse, just so the patient benefits from the directed donation, in this case Dads platelets for Carl. I believe this holds true for directed red cells as well.

Carl's Smile Quilt should be done today!!!! As soon as I hear it is finished, I will add a link for you to, and check it out!!!!!

Thanks for stopping by today!!!! We have noticed alot of people stopping by, as the visitor count climbs higher and higher every day!!!! Please sign our guest book!!! we have recently discoverd quite a few people that keep up with Carl's progress, but never sign his guest book:( I was tipped off by a very reliable source. This person busted a group of women that always check up on Carl, but noticed that they never signed in:( So Please sign Carl's guest book, the "Guest Book Patrol" is watching for you!!!!

Note: The "Guestbook Patrol's" Identity Witheld
to protect the Innocent Hehehehehee

We hope you all have a Grand Day!!!!

If we are children, then we are heirs-heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his Glory. I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.
Romans 8:17-18

Please Keep Cousin Tim Wolter in your Prayers. Tim's heart had stoped beating for 7 minutes, he experienced complications from a coma, but is now doing very well!!! His memory has returned, and he is doing much better!!!! Give Thanks to the Lord, and Pray that Tim has a full recovery!!!!

Please continue to Pray for Sophia, Morgan, and all the other children fighting Cancer!!!! Someday I hope to be able to add links to all of our friends websites!!! The numbers are growing every day, as we meet more and more children fighting for thier lives.

Love

Kelly & Tom

& Carl:)


Wednesday, March 12, 2003 9:55 AM CST

Hello on this Wednesday!!!

Day +1

Carl's Counts ~

wbc 0
hgb 10.1
plts 53
anc 0

CHECK OUT THE NEW PICTURES ADDED

Carl slept well through the night!!! He continues to have these episodes of coughing up mucous. He is however drinking sprite everytime, and I think that is helping to loosen things up. He is receiving Morphine steady, still at a low level, and we give him a rescue push each time he has an episode. That is about the only time he complains of any pain. He is resting most of the time, but when awake, we can get him to talk a little. No smiles however:(

Tom and I are holding up Great so far!!! We have been swithching off sleeping here at the Hospital. We talked to all of the kids at home last night!!! Sydney is spending the week in Morton, as Auntie Jean is there for the week to be with Grandma Phyllis. It sounds like she is enjoying her time there!!! We talked to Sam at Uncle Johnny's and Auntie Sheila's house!!! Sam is going to a deer hunting expo this weekend with Uncle Johnny & Nick!!! He is very fired up to be going!!! A couple of days ago Sam was sitting on Auntie Sheilas lap, mooching her up:) he then said to Uncle John, "Uncle Johhnnyyy.....I'm stealin your wiiife" I asked Sam about that last night, and I told him to tell Auntie Sheila that I am jealous shes getting all of his mooches:)

We talked to Brayn last night too!!! Bryan is doing good!!! He is getting ready for the State Adapted Floor Hockey Tournament on Friday & Saturday!!! Bryan's team had 8 wins with 2 losses on the regular season!!! We can't be there Bryan, but we will be rootin for you from NY!!!!!!! We will be anxious to hear the results!!!!! Carl looks the most like Bryan, sometimes when I look at him in bed, he looks just like little Bryan laying there:) Bryan and Carl have a very special brotherly bond:) Whenever Carl sees Bryan, after he hasn't for awhile, he puts his arms around Bry's neck and gives him a big huggg:)

We are so very anxious to get home and be all together again!!! This has been the longest stretch of being away from home. It has gone surprisingly fast though, and hard to believe the Transplant has happened!!!! We feel very blessed to be here, and to have reached this milestone of treatment!!! The Lord has been Good to us!!!!!

Please keep cousin Tim Wolter in your Prayers, we have heard Tim is in the Hospital in Mankato, we don't know alot of details, we are waiting to hear more about his condition.

Remember little Sophia Marie today, today is her Transplant Day!!!!! Grow Cells Grow for Sophia!!!!!

www.caringbridge.org/ma/sophiamarie

And the Lord shall guide thee continually....And thou shalt be like a watered garden, and like a spring of water, whose waters fail not.
Isaiah 58:11

Love & Prayers

Kelly




Tuesday, March 11, 2003 9:44 AM CST

Day 0 Transplant Day

Update 4:04pm

The Transplant has started!!! Carl is resting and comfortable. The Dr. said that it will take about an hour to infuse, he is getting two out of three bags that were harvested back in September. The third bag will remain in storage, heaven forbid there is ever a need to use it. But it is being saved as a backup, as there is such a high chance for relapse, that is just a reality of NB. The Dr. said "We don't plan on doing this again" With all our Steadfast Faith, we trust that the Lord will keep Carl clear, from this evil disease forever!!!! Please join us in Prayer,

That Carl's Stem Cells are Cancer Free
That these cells will recover Carl without complication
That Carl will remain Cancer Free Forever

"Cancer Free in 2003"

God Bless you all for your Faith in the Lord!!!

The winter is past; the rains are over and gone....the season of singing has come.
~Song of Songs 2:11-12

With Appreciation & Love

Kelly & Tom
Bryan, Sydney
Sam & Carl

Carl's Counts ~

wbc 0.1
hgb 10.3
plts 84
anc 0.1

Good Morning this Tuesday, Transplant Day!!!!!

Carl is resting on the daybed/parent bed right now. I found him a "Orange Kitty" in the gift shop, that is made with a velour washable fabric. So I washed it up for him, now he has a little friend to hugg and love up, he has been missing his teddy bears, (Puffy & Fuzzy):)

The night was pretty good. A couple episodes of caughing up mucous. This will get worse each day, then improve when his counts recover. His comfort level has been steady, a pca pump with morphine running at a low level is continually infusing, to keep Carl comfortable.

We are greasing him up from head to toe with an ointment called Dermaphor. The chemo drug thiotepa causes a sunburn effect on his skin. So keeping his skin gooped up with this ointment will help prevent his skin from sloughing off. So far he looks very good, I think we are doing a good job!!!

Carl is all ready for Transplant, it will take place later this afternoon. The stem cells are not thawed out until about an hour and a half before he gets them. We have been warned that the stem cells will have a very strong odor of Garlic/creamed corn This is from the material that they are preserved in. Also Carl will smell like that for awhile:( Carl always says "Pell" for Smell, we will be able to tease him that he "Pells" :)

We will update later when his Transplant begins!!!! Jenny Bloedow suggested that we let everyone know when the bag is being hung, so that everyone can say some Prayers for Carl during the infusion!!!! Prayers for the cells to be pure, and for the Cells to Grow, and give Carl a new birth!!

Thanks for checking in on us, your Prayers are keeping us Strong!!!!!!

We will update later!!!!

We Love you all!!!!

P.S. Happy Belated Birthday to Lisa Simon, We hope your Birthday was Great!!! We Love you Lisa!!!

Kelly & Tom
& Carl:)



Monday, March 10, 2003 11:47 AM CST

Good Monday Morning, almost noon!!!

Day -1

Carl's Counts ~

wbc 0.2
hgb 10.3
plts 113
anc 0.2

We hope your Weekend was a nice one!!!!!!

Tom is down at the blood bank giving platelets right now, and Carl is watching "The Wiggles" for the third time since I got here this morning:) He still prefers "Shrek" We watched that one three times yesterday!!! I am soo excited, they are making a "Shrek two" but it won't be released until next summer 2004:(

Carl just finished painting 3 little wooden dinasaur puzzles!!! We are letting them dry, then he wants to paint the other sides!!! So he is still with some energy, in fact one of the child life girls stopped in to talk, and he wanted to go to the play room:( It is so hard to tell him "no we can't"

Father Steve was just in our room too, to talk with Carl, and to give him a Blessing. Father comes by almost every day to see Carl!!!

We are all ready for the Transplant tomorrow!!! Actually it will not be as exciting at it sounds. It will be just like a regular transfusion that Carl gets when his hbg. or platelets are low. It will only take about fifteen minutes to infuse. The exciting thing will be that from here, Carl will begin to recover. It will take up to two weeks for his counts to be restored. The Stem Cells that are re-introduced to Carl, will find thier way to his bone marrow, and begin making new bone marrow, and growing new cells!!!


Thank You all for your Faithful Prayers, and continued Love for Carl and our Family!!!!

You who are spiritual should restore him gently.
-Galatians 6:1

Love & Prayers

Kelly, Tom
& Carl


Sunday, March 9, 2003 4:28 PM CST

Hello this Sunday!!!

Day -2 Two more days to go til Transplant!!!

Carl's Counts

wbc 0.7
hbg 10.4
plts 150
anc 0.7

New Roon No. 506
Phone No. 1-212-639-4051

Carl has now been moved to an Isolation Room. I am sitting here typing with gown, mask, and gloves on. We will need to be like this whenever we are in Carl's room. He walked all the way down the hall to his new room today. He looks very good, and is still trying to fleece the Nurses of anything in thier pockets. One of the Nursing Assistants (they take temps. and blood preasure) has been giving Carl dollar bills every day. We need to bring in a piggy bank to start a collection for him:) Maybe he will be a banker when he grows up;)

Tom just left with a load of animals, toys, videos, things that we could not bring in Carl's Isolation room. (OH NO WE ARE ACCUMULATING AGAIN UGH) He loaded up the stroller to push back to the "Donald House" The new room has a better view than the last one, it is brighter, and we don't have to look at a construction sight, although Carl enjoyed the workmen pounding and welding. It did make for some of his entertainment!!!

Thanks to all for continually checking in on us!!! Your Very Powerful Prayers are keeping us Strong. We know the next week will be the toughest, but we are so filled with Joy to have the end in sight!!!!! Once the transplant is done, the return trips to NY, for rechecks and antibodies will be a piece of cake:)

Remember to keep Sophia Marie in your Prayers, she is one day behind Carl in her transplant. They will be coming to NY after for antibodies too, then we will get to meet them!!!

Also keep Morgan in your Prayers as she is recovering from her transplant!!! She is doing so Great!!! We look forward to meeting Morgan & her family when they come for antibodies too!!!

Lastly please Pray for all of the children at Sloan Memorial Kettering and everywhere fighting for thier lives, they are all so precious.

Acording to your steadfast Love give life to me; then I will keep the testimony of your mouth.
Psalm 119:88

Love & Blessings

Kelly & Tom
& Carl:)


Saturday, March 8, 2003 3:00 PM CST

Hello on a Saturday Afternoon!!!

Day -3

Carl's Counts ~

wbc 2.6
hbg 7.7
plts 194
anc 2.4

A very uneventful day for all of us. Carl has spent just about all of the day in bed, mostly sleeping. The tube feeds are slowly being eliminated, Carl has been getting sick consistently about 2:00am. He will be put on TPN (IV feedings) in a couple of days.

They believe the line culture is a treatable bacteria. It sounds like the line will be left in place. They were waiting to see further growth of this culture to determine which type of bacteria was there. One type is treatable, and the other type is more resistent to antibiotics, and could result in his line being removed. So unless anything different comes back on the culture his line will stay put.

Carl's final dose of chemo is running right now. We Pray that this is the last chemo he will ever need!!!!! When the nurse was hanging the bag, she said to Carl, "Here it is, the last Hurrah" He has been sleeping ever since it started to drip, not too much Celebrating on his part.

Since Carl's hgb is below 8 he will get his first transfusion of red blood cells after his chemo is done running. The lab called up and said that it was ready (Auntie Jill, Carl will be getting your blood!!!!!)

If you were wondering about Carl's virtual Quilt that I had mentioned a few weeks ago, It should be ready any day now!!! Kari, the girl that was working on it, emailed me earlier this week, and said she was almost done with it. She just has a couple of more pieces to finish!!! As soon as I hear from Smile Quilts, I will post a link for you to go to, and check out Carl's Quilt. They are really neat!!!

Wishing everyone a very nice Evening!!!

He was before all else began and it is his power that holds everything together.
Colossians 1:17

P.S. Grandma Phyllis is coming home from Woodale today, Auntie Janet, Auntie Joy, Sydney & Sam will be bringing her home!!! Auntie Jean will be coming tomorrow to spend a week, then Auntie Judy is coming out to Morton next weekend to spend a few days with Grandma & Grandpa Robinson too!!!

God Bless

Kelly & Tom
& Carl:)


Friday, March 7, 2003 12:00 AM CST

Happy Friday to everyone!!!

A Happy Belated Birthday to Katlynn Johnson, her Birhday was on March 4th We hope it was a very Special Day!!!

Day -4

Carl's counts

wbc 2.9
Hgb 8.3
plts 228
anc 2.8

anc = Actual Neutrophil Count, neutrophil's are the part of the white blood cell that fight infection.

Poor Auntie Jill didn't get home until 3:00am, her flight was delayed out of NY, so she missed her connection in Chicago. We talked to her this morning, while she was at work:( Hopefully Auntie will get caught up on her sleep tonight!!!!!

We did hear back on one of the cultures drawn on Carl's Hicman line. His white lumin came back positive with one out of two possible bacterias. This could explain the fever. His temperature has been normal now for over 24 hours, so the antibiotics may have helped the infection. They are waiting for further growth of the culture to determine the exact type. Carl has been put on NPO, nothing to eat or drink til further notice. The Dr.s will be making a decision on what to do with the line. It may be that the Hicman is left in place, since the fever has been normal for some time, or the Hicman may be removed, and a temporary line put in, just to get through the Chemo, and transplant???? We will find out later what will happen.

Tom went down to the Blood Bank this morning to give blood for Carl. We now have two units of blood ready when Carl will need a transfusion. He will probably require quite a few transfusions of both red cells, and platelets throughout the course of the transplant. So far his counts have not plummeted, they are even fluctuating some, but we were told this is normal. He may need his first transfusion in a couple of days.

Carl's energy level, and mood are starting to show signs of not feeling as good. His bottom as well is causing him some discomfort with frequent loose stools from the antibiotics. We have been putting on this butt cream that they mix up here on the floor, hopefully it will help.

Tom & I have been able to get out of the room and have meals together!!! Carl does not mind, he enjoys when one of the volunteers come in to play with him. They also have volunteers here that come in and read stories to the children!!! Today he heard a Knock Knock joke story, and really liked it!!! Before we came to New York, Carl had made up his own Knock Knock joke:) It goes like this ~ "Knock Knock" "Who's There?" "Justin" "Justin who?" "Justin to give you a kiss!!!!" Then, of course, he always gets lots of kisses:)

Have a Wonderful Day!!!

Strengthen the feeble hands, steady the knees that give way; say to those whith fearful hearts, "Be Strong, do not fear; your God will come."
Isaiah 35:3-4

For Kala ~ GO WARROAD !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Love & Prayers

Kelly & Tom
& Carl:)

P.S. Bryan, Sydney & Sam we miss you and Love you guys!!!
(there is a little boy on this floor that reminds me so much of Sam, every time I see him I want to mooch him up:)



Thursday, March 6, 2003 12:42 AM CST

Hello on this Thursday!!!

Day -5

Carl's counts ~

wbc 2.5
hbg 8.5
plts 227
anc 2.2

Today has been easier than yesterday, everything seems to be in perspective. Carl will not get the third dose of the Thiotepa, that did not finish due to the seisure. He will go on to the Carboplatin today, and get that for three days, along with the forth of six doses of Topotecan. He is on an anti seisure med (dilantin) for the remainder of the chemo for precautionary measures. He continues with several antibiotics too, because of the fevers. We have got off to a rough start, usually the worst comes with the low counts. We are all geared up for the haul, and are confident that the Lord will see us through!!!!!

I talked to Tom about an hour ago. He was at the Newark airport waiting for a shuttle to New York. And I just got off the phone with Auntie Jill, she is at the LaGuardia airport waiting for her flight to go out. It is snowing here, and one flight has already been cancelled, but she said if she doesn't get out, she will just take a cab back here to us:) I have really appreciated having Auntie Jill with us this past week, I really needed her help!!! And it sure helped Carl, as he has been missing home, and his brothers & sister just terribly. He keeps talking about getting all of his tubes out, then he can go home:) He told me one day that when he gets all of his tubes out, then Uncle Chucky can tickle his tummy:)

Please remember to keep little Sophia Marie in your Prayers, as she is having her transplant right along with Carl. They have become transplant buddies:)

www.caringbridge.org/md/sophiamarie

Do not tremble, do not be afraid. Did I not proclaim this and fortell it long ago? You are my witnesses. Is there any God besides me? No, there is no other Rock; I know not one.
Isaiah 44:8

Love

Kelly




Wednesday, March 5, 2003 9:57 AM CST

Update Wednesday 6:04pm

The Lord said in this world there would be trouble. Well today we had our first and very scarry bump in the road. Carl had a seisure thismorning shortly after his chemo was hung and started running. He had been running a temp. last night, and it had started to creep up again today. The Docs feel right now, that it was a Febrile Seisure (seisure from fever) and Carl has had a couple seisures from fever when he was a baby, so he has a history of them. The chemo can contribute to this, but he had not had the usual amount that seisures can result from??? He had a head ct scan, that turned out normal. So right now we still have concern about the fever, they are treating Carl with antibiotics for a possible infection. Carl is back to his normal playful self, and we are feeling better about the situation. Auntie Jill is flying out tomorrow, and Tom is flying in about the same time. We feel that everything will get back on track, and turn out good. Carl was so healthy going into this, it is such a shock to us as well as the Dr.s, but when dealing with these things, one can never tell what can happen. I know all of our Prayers will get us through!!!

We will keep you all posted!!!

Love to all

Kelly & Jill

Carl's counts ~ day -6

wbc 3.3
hgb 9.8
plts 295
anc 2.5

Carl is doing well, he is adding new people daily to his fan club:) Yesterday Carl charmed our cleaning lady, she told us thismorning that she went home and told her family all about Carl. Then she brought more cleaning ladies into our room to meet Carl:)

Also yesterday, Dr. Kushner stopped by at the end of his day to check in on Carl. He always spends time fooling around with Carl. When he was leaving the room, Carl called out "Bye Bye, I Love You" :) Well Dr. Kushner turned right around and came back in the room, his arm outstretched with his dictaphone in hand, and said "Can you say that again?" He then told Carl "I Love you too" It was really cute, Carl sure knows how to win a heart:)

We did have a little bit of Nausea last night, and he started to run a low grade fever:( Carl has since been put on a steady drip of Zofran (for nausea) and an antibiotic, just in case of any infection. Also cultures were done on his lines to check for any infection there. (which is the first place they look for trouble) But the temp has returned to normal today, and the nausea under control. He appears to be just as full of beans as he was yesterday!!!

I have added a new picture of Carl with Auntie Jill, and I am waiting to get a disc from one of the child life gals to add another later!!! Auntie Jean sent me a picture of her with Carl & Auntie Jill, that was taken in December at the "Donald House" in Rochester. Both of the Aunties are kissing Carl at the same time:) The expression on Carl's face is just too cute:) So this child life gal is scanning the picture at home and bringing me a floppy, so that I can post this Great picture!!!

Thanks for continually checking in on us!!! And for all of your Faithful Prayers!!!!

Jerri ~ That was soo wonderful of you to donate blood!!! I would like to encourage everyone to donate as well!!! I have been reading more and more about a shortage, and about children having to wait for transfusions because there is not always blood ready and available when needed. What a wonderful Gift of Life!!!

Above all things have intense and unfailing Love for one another, for Love covers a multitude of sins.
1 Peter 4:8

Love & Prayers

Kelly





Tuesday, March 4, 2003 12:36 AM CST

Carl's counts ~

Monday day -8
wbc 6.4
hgb 11
plts. 357
ANC 3.6


Tuesday day -7
wbc 3.8
hgb 10.3
plts 338
anc 2.2

Hello this Tuesday!!!

Today is day -7 for Carl.

His mood, temperment, activity level, happiness, contentment, are still normal!!! He is continuing to get his tube feeds at night, as long as he is tolerating it, and not vomiting. So far no nausea, we will keep our fingers crossed that he does as well as he did on his regular rounds of chemo at Mayo!!!!!

Auntie Jill stayed in the room here with Carl last night, I will trade off with her tonight. For the first three days, the chemo drug (Thiotepa) comes out of the body through perspiration, so Carl is showered an hour after it is done running, and then again at six hours after. Last night since his chemo was started so late, for the first day, he needed to have a bed bath (instead of shower) at 1:00am :(
Plus we are changing Carl's diaper every hour to help prevent a sore bottom. So I think Auntie Jill is a little tired today. She is trying to take a little nap with Carl, while watching "Shrek" but Carl is not letting her sleep:)

At 2:30 today, Auntie Jill has an appt. down in the blood bank to give blood. At Memorial Sloan Kettering here, they allow you to donate blood, and to direct it for a patient if you want to, and they encourage parents to donate blood for thier children if they can. Of course It is always very good to donate for any childs cause, and right now there is an extreme shortage of blood in many places around the country. Auntie Jill has Carl's blood type A+ and Tom also may donate for Carl. I can only donate platelets since we don't have a match. I didn't know this, but anyones platelets can be used for anyone. So I can donate platelets for Carl, every 72 hours. I still can give blood, and it could be used for another patient!!!!!

Today we had a very special visitor!!! The child life girls came in our room with a musician!!! He saw Carl sitting with his big "Shrek" so right away he knew what song to sing for Carl!!! He played a guitar, and sang the song "Im a Believer" the song that Donkey sings at the end of the movie!!! It was soo Great, Carl was very impressed!!! You should have seen Auntie Jill:) She picked up Carl's "Shrek" and started dancing around with him:) HeHe it was fun, (You had to of been there)!!!

Please keep all of the children with NB, or fighting any Cancer in your Prayers, they are all Big Heros!!!!!!

God Bless

Kelly


Monday, March 3, 2003 5:26 PM CST

Good Evening to everyone!!!

First things first:

Our room no. at Memorial Hospital ~ 533

Our Phone no. ~ 212-639-4085

We are settled in our room, and Carl is just about done with his first day of chemo. He will continue to receive Hydration throughout the course of the transplant, but the actual chemo only runs for a few hours each day, for five days. In my journal yesterday I had explained how the days would be counted. I was almost correct, today is considered day -8, tomorrow will be -7, and so forth. The day he will be reinfused with his Stem Cells will be next Tuesday, and that day will be day 0, then each day after will be a + day.

We will continue to update on Carl's daily progress. I brought the Laptop here to the Hospital, and hooked it up in the room, and it works!!!!! So keep checking for frequent updates!!!

If you have not checked out Eric Fischer's website:

www.caringbridge.org/ia/ericfischer

You will have to read his tribute to Carl:) it is very nice!!! Also check out Eric's pictures, he has a couple of Carl on his website:)

Thanks everyone for all of your notes, and continued Prayers, I can't tell you enough how much it helps to pull us through, and give us the strength to keep going!!!!!

Have a Great Evening!!!

Love

Kelly


Sunday, March 2, 2003 7:21 PM CST

Good Evening this Sunday, and Stem Cell Transplant Eve

We have spent most of the day inside, it was a rainy day:( It did clear up this evening, so we went out for a little walk, and had supper.

Carl is just about ready to be hooked up for the night. We will head over to the PDH about 9:00am to start our day. Carl will be examined, have blood draws, then begin his first day of chemo. It will be called day -7

From there the next day will be -6 and so on. One week from tomorrow will be day 0 the day Carl will be reinfused with his Stem Cells. Then from there the days will all be + days. So Tuesday of next week will be day +1 ect.

Thank You for all of your Well Wishes and Prayers as we get ready for the Transplant to begin!!!!

Please go to Eric Fischers webpage:

www.caringbridge.org/ia/ericfischer or click on the link below. Eric has wrote a very touching Tribute to Carl. Be sure to have a kleenex handy when you start to read it, it is a tear jerker. Eric did an excellent Job of writing about his little buddy Carl. The two of them have become very close, and have a very special relationship:) It is definitely worthy of checking out, and Please sign Eric's guestbook, he deserves alot of praise for such a Great Job!!!

Please continue to keep Morgan Barnes in your Prayers, she is beginning to recover with her Stem Cell Transplant!!!

www.caringbridge.org/nc/morganbarnes

Another little dolly that is beginning a second Stem Cell Transplant on Tuesday is Sophia Marie, please keep her in your Prayers as well, her Mom could use some of our wonderful support as well!!!

www.caringbridge.org/ma/sophiamarie

Thanks Sooo Much all of you, Your SO AWSOME!!!!!!!!

P.S. A couple of new Pictures added:)

I trust in your unfailing Love; my heart rejoices in your salvation. I will sing to the Lord, for he has been good to me.
Psalm 13:5-6

God Bless

Kelly


Saturday, March 1, 2003 6:42 PM CST

WE ADDED A COUPLE OF NEW PICTURES:)

Hello to everyone on this Saturday evening!!!

We have had a very wonderful day here in NY. We started out by taking a cab up to Times Square thismorning. WOW!!! We wanted to take Carl to the Big "Toys R US" store. It is huge, they have a big Ferris Wheel inside the store!!! We bought tickets to go on the ride, and were heading over to stand in line for the ride. The girl at the counter where we got the tickets, noticed that Carl was wearing a mask. So she took us right up to the entrance to get us right on. The guy opperating the ride asked us which car we would like, (they have all different cars, like Tonka, little tykes, rugrats etc.) I told him it didn't matter, so we were put on a Tonka truck car:) How Fun, Carl Loved it!!! While we were up on the ride, we noticed a studio on the 3rd floor. Inside the studio was "The Wiggles" being interviewed and filmed. We found out later that they were doing an interviw for 20/20. We asked guest services if we could get a Picture for Carl with the Wiggles, but we were told they would not be in the store after the interview:(
Oh Well It was Very Fun, and we were glad we brought Carl!!!

We walked around a little bit, and checked out a couple of stores, we also took Carl to the Disney Store!!! That was really fun too!!! We thought we had better get back to the "Donald House" for Carl to rest awhile.

Our cousin's Freddy & Patty Hauck, that live on Long Island came by a little later to pick us up!!! It was Carl & my first time meeting them, they are very sweet people!!! We went to see the St. Patrick's Cathedral, and to the Rockefeller Center. Carl enjoyed watching the iceskaters there, it was very pretty area!!! Fred & Patty brought Carl a NY Islanders cap, that looks adorable on him, and a Islander, Hockey Player bear!!! It is Sooo Cute!!!! We enjoyed our outting very much, and appreciated all that we learned from things that Freddy pointed out to us!!! We had a very fun day, and Carl even fell asleep on our way back to the "Donald House"

Tomorrow we may just get out and walk around our area here for something to do. We have some film to get developed, so maybe we will have some new pictures to post!!!

Hey stop by Kala Mckinnen's website it is:

www.caringbridge.org/mn/kalajoy

Kala is a real Sweetie, she and her family & many friends, and her boyfriend have left Carl lots of Great notes!!!
We met Kala at the Rocheser "Donald House" and we have kept up with each other ever since!!! Kala is currently finishing her final round of chemo!!!! Yea!!!!!
One of Kala's friends Jackie, met our Jenny Robinson at a Basketball game last night in Crookston Mn !!!!! What a small world huh:)
So check in on Kala, and leave her a hello:) She would Love it!!!!! Getting notes from people you don't even know are the Greatest!!!!!

Love & Prayers

Kelly



Friday, February 28, 2003 12:33 AM CST

Happy Friday to all!!!!!

The Stem Cell Translant will start on Monday!!!!!

Carl's Creat. clearance test was above normal!!!!!

We have not heard the results on the other test from earlier today, but with the first one being normal, that was all we really needed for the go ahead on Monday!!!!!

While we waited today for blood draws, (a draw every hour and a half, two draws total) Carl entertained himself, and everyone in several different waiting rooms (as we moved around a couple of times to keep busy) with a Woopie cousion:) He had Auntie Jill blow it up, then he would plop his but down on top of it on his chair. He would giggle like mad, then have her inflate it over and over again to repeat his comic act:) I asked Auntie Jill, "How many times can he do this in an hour and a half?" What a goof ball, to quote Auntie Jill:)

So now we are back at the "Donald House" taking a break before we figure out what to do next. Maybe we can get Carl to take a litle nap. He sure could use it, I think he has spent every ounce of energy that he could possibly have, or at least I think he should have????

Have a Great Friday!!! And a Blessed Weekend!!!!!

Trust in him at all times, O people; pour out your hearts to him, for God is our refuge.
Psalm 62:8

Love & Prayers

Kelly

P.S. As always, Thank You for your Love & Concern, We get such a lift from reading your Great Notes:)



Thursday, February 27, 2003 6:02 PM CST

Good Evening this Thursday!!!


We just got back from the PDH, and all of us are very tired. Carl was not able to start the Transplant yet today, as the Creat. clearance (Urine collection) results were not at a high enough level for the kidney function. The collection was repeated for the third time, with a foley inserted, (three trys to get the foley inserted correctly):(:(:( Carl, however is no worse for the wear, he is running around and Growling like a lion as I type!!!

Tomorrow Carl will have a small iv line put in, and an injection of Isotope,(they don't want to use his Hicman, and have any contamination) then blood samples will be drawn to check kidney funtion. This will be an additional check to insure the kidneys are ok and able to withstand the Transplant. If this all checks out ok, (and I was assured that we will find out results tomorrow) then the Transplant will begin on Monday.

We were very frustrated, and disappointed today to still be waiting for the Transplant to start. Four more days of waiting. I told Auntie Jill today, that God just wanted us to have a couple more days of fun before we get started!!! We were able to keep a mask on Carl quite a bit today, (Auntie brought these really cool blue surgical masks with her) So Carl will agree to wear one!!! So we are going to figure out a plan as to what we will do to spend our days before Transplant!!! Maybe we will go up to Rockfeller center, or to Time Square or something. I would really like to go to St. Patricks Cathedral and attend a Mass sometime this weekend, I have heard that it is really beautiful to see!!!

Thank you for the Prayers, they are being heard above, and we do feel the benefits more than ever, I know they are helping, otherwise I would be a basket case by now:) And we are feeling stronger than ever, So please keep the Prayers coming strong!!! May God Bless all of you!!!!

We will update after our PDH appt. tomorrow!!!

Love & Prayers

Kelly


Wednesday, February 26, 2003 7:07 PM CST

Good Evening on this Wednesday!!!

Auntie Jill is here safe and sound!!! Carl has been giving her a run for her money, jumping on the beds and running around like a wild man. We walked down to a great place to eat for supper called the Wicked Wolf. Another mom here at the Donald House, Virginia, and her son Jay have been there and she had told me how they really like it. It is very good Virginia if you are reading this!!! We sat right in the corner of the place, which is right on the corner of the block. So we got to watch all the traffic, and hustle and bustle of people walking by. It was really fun!!!

Talk about suspense... All of the results are not back from some of the bloodwork taken, and the urine collection that we had to repeat, and the Stem Cells. I will phone the PDH in the morning to get the word. The Dr. (and we are) keeping our fingers crossed that everything will check out ok, so that we can get the ball rolling. I truly believe that all the tests will be fine, Carl is the healthiest he has been, in the last six months. The only question would be the Stem Cells, and we just have to Pray and have Faith that they will be perfect for Carl to receive. If the Stem Cells cannot be used, then I don't know what we will do, but I feel very confident that Gods work is being done here, and he will finish what he has started!!!!!

I hope you all have a very nice evening, I want to Thank You all sooo much for the wonderful notes and kind words that we have been getting from all over the place from friends and relatives of Kala (Our friend we met in Rochester from Warroad Mn), From some of our new friends that we have met through Caringbridge, Morgan's family, Cody & his family!!! You guys are all so Awsome, with all of these Prayers, We can move Mountains!!!! THANKS!!!!

The works of His hands are truth and justice; and all His decrees and precepts are sure.
Psalm 111:7

Love and Prayers!!!

Kelly


Wednesday, February 26, 2003 10:03 AM CST

Hi everyone!!!

I thought I would do a quick update because alot of you are checking in on us frequently!! And we Thank you sooo much, we appreciate all of your continued support!!! And of course PRAYERS!!!! We Love all of you So much!!!

Carl's bag (urine collection) came loose last night, and the whole test got screwed up:( So thismorning we had to go back to the PDH to get a new one attached:( We will get a 6 hour collection. This is very important because they need to use this measurement to calculate out the amount of chemo meds Carl is given.

We briefly met with one of the Docs again to go over some of the transplant details. They are still waiting for a couple of blood results to come back, and this urine collection will have to be ok too, to begin the transplant. The Stem Cells are here, and they also need to be checked and be ok'ed. So thisafternoon when we go back, we will get either get the go ahead, or not for transplant.

I will update later when I know how everything turns out!!! We go back at 3:00 to the PDH. Auntie Jills plane will be coming later today too!!!

Thanks again for all of your encouraging words!!!

Love & Prayers

Kelly


Tuesday, February 25, 2003 7:58 PM CST

Hello & Good Evening!!!

We stayed here at the "Donald House" almost all day. This afternoon, I got a call from the PDH. They wanted to repeat a urine collection test that Carl had done the first week we were here, the Dr. said he was concerned that the output was not what it should be. That day he started the first collection, was a day he had one of the tests where he was sedated. When we got back to the RMH, Carl layed down for a nap about 3:00 (That was also the day Tom had his kidney stone episode) and Carl slept all through the night. So his output probably was not what it would have been normally. So we came back from the PDH today, with a urine collection bag attached, and a IV with a pump in a little backpack, hooked up to Carl's hicman for fluids. I am sure they will get a normal output tomorrow. So Carl is hooked up to his feeding tube for the night too. It is just to hard for him to navigate around with a catheder bag, and a back pack attached to him.

When I was on the phone earlier with the Transplant Dr.s assistant, I asked if the Stem Cells have arrieved yet. She told me that they were currently being tracked by a couple of people. So at this point, I don't have any confirmation that they are here. I will find out in the morning when we have to go back to the PDH. I would think by then, they should have them here. Carl has an appt. with one of the Transplnt Drs. at 11:00am.

Auntie Jill will be flying in tomorrow about 4:30!!! I was talking to her today on the phone, and told her that every time Carl sees an airplane or helicopter out the window, he is certain that she is on it, and he should go down to the lobby to meet her:) He will be very Happy tomorrow when Auntie does get here!! So will I!!!!!

Have a very nice evening!!!

Therefore, He is able also to save to the uttermost...those who come to God through Him, since He is always living to make petition to God and intercede with Him and intervene for them.
Hebrews 7:25


Monday, February 24, 2003 2:18 PM CST

Hello on This Monday afternoon!!!!!

Thank you for checking in on us today:) And Thank you for the Prayers we continue to receive for Carl's Healing!! The next couple of weeks will be very difficult as the SCT is about to begin. Yesterday I emailed Dr. Kushner, to ask him a couple of questions about Carl's stem cells. I don't think it was even an hour later, and he responded. Can you believe that, on a Sunday even. I really didn't expect to receive an answer until maybe Monday or Tuesday. I am extremely Impressed, and very Greatful to have been led to this wonderful place!!!

I talked to Tom last night after he and Sydney got back home. Tom was telling me about a conversation that he had with Uncle Clair. I guess I had not thought too much about this myself, but Clair mentioned the Irony of Carl being in New York, (We went to see the Statue of Liberty on Saturday)
and our theme for this past years Relay for Life team which was, "Lighting the way for a cure" with the (Statue of Liberty) Poster Prop, playing a Huge part in our First Place Prize Status for the Robinson Team. Interesting Huh... I have to admit though, when I was up on the top deck of the ferry boat, in the rain, with no film in my camera, taking spectacular shots of "Lady Liberty" I recall looking up at her and thinking, "Boy, that poster was very realistic to this" It is almost unbelievable that just three weeks before Carl's diagnosis, he was running around at the Cancer walk, with Stage 4 Neuroblastoma, and we had no clue.

It was very hard for Carl yesterday seeing Dad & Sissy leave. He cried for about an hour. It just breaks my heart, and I feel so helpless. I comforted Carl with the thought of Auntie Jill coming to stay with us. She will be flying out on Wednesday, and staying for a week!!! That will give Tom some extra time at home, and work. Tom will come out when Jill gets ready to go back home. The second and third week of transplant will probably be the worst for Carl, the first week will involve the High dose chemo, then waiting for his counts to drop to 0. One of the most severe effects from the chemo will be mouth sores, which can go all the way down his throat. He will receive Morphine for pain, and be on IV feedings. We will have to do diaper changes often, as he will be at risk for a very sore bottom. And we will bathe him twice a day in Hibiclense, as one of the Chemo drugs comes out of the body through sweat, and can cause skin blisters.

A little friend we have met through caring bridge, Morgan, is in the middle of her transplant right now. Feel free to check in on her, and leave her family a note of encouragement!!! They could use it right now!!! Her website is www.caringbridge.org/nc/morganbarnes

Carl and I will try to hang out in our room, mostly, to avoid any bugs that are floating around the "Donald House" He seems much better today than when Dad & Sydney left, he is playing nicely, and snacking alot:) I am going to try to fatten him up before Thursday!!!

Have a Wonderful Day!!!

For with you is the fountain of Life; in your light do we see light.
Psalm 36:9

God Bless

Kelly


Saturday, February 22, 2003 11:18 PM CST

Good Evening, this Saturday!!!

I just added a new Picture that Uncle Rick emailed to us. Sam spent the weekend with Uncle Rick, Auntie Jill, Nicky and Kiri!!! Sam was soo excited to be there on Friday, he didn't even care to talk to me on the phone. Uncle Rick & Nicky got Sam out Ice Fishing for the first time!!! It sounds like they all had a Grand time!!! I cant wait to hear Sam tell us all about his weekend:)

We went out on a very rainy day to see the "Statue Of Liberty" and to Ellis Island!!! It was very wet, but we lucked out because there were a dozen venders selling Umbrellas. As soon as we stepped out of the cab, we started to hear "Umbrella,Umbrella,Umbrella" boy these guys think of everything here. And I do believe they were making a killing, because we sure saw alot of these umbrellas in the crowd today:)

We managed to convince Carl that he needed to wear a mask if we were out in a crowd today. He kept it on most of the time, but I had to keep reminding him. It is so important to keep him healthy, and germ free right now. If he catches a simple cold, the Stem Cell Transplant could be delayed further. Carl is scheduled to be admitted to the Hosp. on Thursday this next week. The stem cells have yet to be sent from Mayo. They are supposed to be sent on Monday, and should arrive on Tuesday. They will need to be checked before Carl gets them, to be sure they are ok. That brings us to Thursday. So we pray that the Stem Cells arrive on time safely, and that they check out fine.

We enjoyed our visit to Ellis Island, and our boat ride past the "Statue Of Liberty" Carl was very excited to be on a big boat, he wanted to sit right up close to the rail to see the water. He started to get wet from the rain, so we brought him inside and got a window seat that he could look out!!! I took a bunch of really great pictures, I even went out on the upper deck to get some spectacular shots of our "Lady Liberty" Then just before we were leaving the Ellis Island building to get back on the boat, Tom was going to take a picture of Sydney, Carl & I next to a display of the original baggage the immigrants carried. He started to take the picture, then realized that I didn't have any film in the camera!!!!! Go Figure, Well Sydney had a little disposable camera along, and took some of her own, so we will have some pictures:)

Please keep Uncle Clair's brother Tom Murphy and his family in your Prayers. Tom has been battling cancer, and is loosing his couragous fight. We heard from Clair earlier today, and he mentioned that Tom may not be with us much longer. Pray for all of the Murphy's and thier families for this very difficult time. May God Bless them and give them the Strength and Comfort they so desperately need.

The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.
Deuteronomy 31:8

Love & Prayers

Kelly


Friday, February 21, 2003 3:00 PM CST

Hello on this Friday afternoon!!!!!!

Happy Birthday to Eric Welter!!!!! We hope your 22nd Birthday was a Great one!!! We Love you and miss you!!!

Tom & Sydney have finally arrived!!! The traffic was very heavy from the airport to the "Donald House" Carl and I waited down in the lobby for almost two hours. We wanted to get a picture of Sydney and Carl, when they first got here, Syd & Carl have been missing each other terribly.

While we waited for the shuttle van to get here, Carl visited with everyone coming and going to thier rooms, he asked every food delivery guy what thier name is, and he even invited himself along to a pizza place with one of the "Donald House" office workers:) What a little social butterfly, he is sure feeling comfortable here.

Yesterday we had a very special visit from three NY Police officers. Mike Morgillo from the PD phoned on Wednesday, he introduced himself, and told me that he had heard that Carl was at the NY Ronald McDonald House. He is friends with our friend Eric Fischer. Tracy, Eric's mom had emailed Mike a couple of days ago, and told him about Carl. She said if you ever get a chance, maybe you could look them up, and stop by to visit Carl. Well Mike arranged to come by the "Donald House" on Thursday morning to pay Carl, Eric's little Buddy, a visit!!! The three officers came in uniform, and brought Carl some NYPD gifts!!! One of the very special gifts that he received, was a (Karrie Bear) which is a bear that was made to honnor the fallen NY Police men, or Firefighters from 9-11
This particular bear that Carl got, is in Loving Memory of
(Timothy Roy Sergeant) Each bear is made in honnor of a different fallen hero. This was truly a very special visit for Carl!!!

We are going to get out now for a little while, I want to bring in a roll of film (check out the photos later) and we will go find somewhere to get a bite to eat. It is soo nice to have Tom & Sydney here, we will all enjoy this weekend very much!!!

I want to Thank Uncle Rick, Auntie Jill, & Uncle Clair for all making it possible for us to be using this Laptop in our room right now!!!!!! This will be Wonderful to be able to update whenever I get the notion!!! You guys are soo Great!!! We Love you All!!!

Have a nice evening!!!

Love

Kelly, Tom
Sydney & Carl:)


Wednesday, February 19, 2003 1:23 PM CST

Good Afternoon on this Wednesday!!!

Firstly I would like to request Prayers for the families of Ron & Jerri McKinley & Jerri's brother Rick Wilgers. I was very saddened yesterday to receive a email from Jerri, her brother Rick has passed away. Rick was only 45 years old, and was a victim of a sudden Heart Attack. Ron & Jerri have been as close as family to our family over the course of Carl's illness. We have never met them personally, but we feel a very close bond to them and thier Grandson Kaden!!! They have been daily support to our family through thier Prayers and steadfast Faith, We are truly blessed to be graced with thier friendship. Our Prayers are with you all at this very difficult time. May the Lord show you his comfort and provide you with strength. God bless you all we will Pray for your families healing.

Carl is doing very well, we have not had much to do the past couple of days. Carl has played, and I have almost finished the book that Sheila borrowed from our Church, and mailed to me last week. It is called: Medjugorje ~ The Message by Wayne Weible. I must say I am truly amased that I had never heard of this before. What this book is about, is a journalist, Wayne Weible, he writes about Medjugorje, a small rural mountain village in Medjugorje Yugoslavia. Where the Virgin Mary had been appearing to 6 young people for almost 5 years, beginning on June 24, 1981. He wrote about the visionaries apparations, and his own experiences with his trips to Medujgorje. He wrote about how these happenings have changed the lives of many believers.

I first heard of the Medujgorje, from Sara Hammer. She told me about a friend of hers, named "Mary" that visited the sacred place. Her friend took a picture of the St. James Church, and when she had her film developed, and saw this picture she was amazed. On the picture was what appears to be a immage of "Our Lady" this immage was not there when she took the picture. She gave Sara a copy of her picture, then later made more copies for her to share. So after I met Sara, and talked to her on the phone, she told me that she wanted to send me one of the copies of this picture. I have scanned this picture, and added it to our picture section, I wanted to share this with all of you too!!!

One message that I have received through reading this book, was to have Patience and to Trust. And I have found this to be true the last couple of weeks. Just when I got all worked up over something, I realize that what ever I had gotten all worked up over, had resolved itself anyway, and all I needed to do was keep my focus on my faith, and to trust that God would show me what was best.

Have a very nice Day!!!!!

The eyes of the Lord are toward the righteous, and His ears are open to their cry....The righteous cry and the Lord hears, and delivers them out of all their troubles. The Lord is near to the brokenhearted, and save those who are crused in spirit.
Psalm 34:15-18

Love & Prayers

Kelly


Monday, February 17, 2003 2:31 PM CST

Good Afternoon on a Blizzard NY day

What an experience, trying to get to the PDH in a foot of snow pushing a stroller. I think I would have been better off carring Carl. The snow filled intersections, made for a challenging 5 block trip. A couple of times I found myself out in the middle of the street, as there were very few cars moving through. Being a Minnesota gal, I didn't think this little snowfall could stop me. We made it to the building door, very thankful to finally be there. The trip back to the "Donald House" was much easier!!!

Carl weighed in at a all time record of 33 pounds!!! We found Carl's favorite little nurse Gail, and gave her one of the pictures of her with Carl on Valentines day!!! Of course Carl got another big Hugg too:) Then Carl had his Dental exam. He is usually a little bugger about letting anyone look in his mouth, but the Dentist managed to see what she needed to. And she thought everything looked very Good!!! I briefly spoke to Dr. Kushner and he said that all of Carl's tests from last week looked Great!!! He said that we are just waiting for the Stem Cells to arrive.

Tom made it home just in time last night before the big storm hit Newark!!! I was very happy to get his call that he was back home safe and sound:) Carl was very sad that Dad left yesterday:( I assured him that Dad would be back on Friday, and would be bringing Sydney with!!! That really helped alot, he has been missing the other kids quite abit too. I told Tom that I think Carl is getting too smart for his britches:) We were able to pull the wool over his eyes for 5 months, but he is starting to get wise to this whole deal. Last night he layed in bed and asked me, "Mom, Why we here?" Sometimes it is really hard to come up with a real good answer. He doesn't look sick, or feel sick? So why do we need to go to the Dr?????

Wishing everyone a very warm cozy evening!!!!!

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort; who comforts us in all our affliction so that we may be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God.
2 Corinthians 1:3-4

P.S. Jenny Bloedow~ Wishes for a very Exciting trip!!! We will be looking forward to hearing all about it when you return:) We Love you!!! Prayers for your safe travels:)

P.S.S. We are having a "Smile Quilt" made for Carl. It is a very special made to order, virtual quilt, with photos, and favorite things of Carl included on it!!!! If anyone would like to send any photos or ideas to include on Carl's quilt pleas do so, you may email Kari King, or direct any pics that you think would be fun on his quilt to:

kari4kings@msn.com

Thanks everyone!!! I know alot of the Robinson's have some great pics!!!

Love & Prayers

Kelly


Saturday, February 15, 2003 2:40 PM CST

Hello on this Saturday!!!!!

It took me about a half an hour, but I added two new pictures, using the scanner here at the "Donald House"!!!
You will have to check them out!!!

Today has been very nice, no appointments or anyplace we needed to go. We got up and got ready to go venturing out for a Saturday walk around NY city!!! We walked up to Central Park, and took a carriage ride around the park:) That was alot of fun, Carl asked the driver what his horses name was, and he introduced "Clancy" to Carl. We took some pictures there when we got back from our ride.

We had lunch at a little deli across the street from the Park. We sat in the diner, next to about 8 NY Police officers. They kept getting calls back and forth on thier radios about the "Anti War- demonstration" that was being organized not too far from there. They were talking about the parade going across the 59th st. bridge. They have set up road blocks, and barracades not too far from the "Donald House" even. They were expecting quite a large demonstration to be going on. It probably will be on the news tonight.

We thought that we should be heading back to the "Donald House" but since the FAO Schwartz 5th ave was right there, we had to take Carl inside there. It was a very awsome toy store!!! It would be something that Sam would have appreciated even more than Carl. They had a huge Lego area, with a "Builder Bob" made out of legos. We took a few pictures there too. Now that I figured out this scanner thing, I sould be able to change pictures often!!!

Tom will be flying back home tomorrow afternoon. He will leave here to catch a shuttle to the airport about 12:20. I will stay here with Carl til the Transplant, we are looking at it starting about the 25th of February. On Monday Carl will have a dental exam at the PDH. to check for any mouth infections. Right now we have to be extremely careful not to expose Carl to anything. If we could get him to wear a mask would be the best thing, but he takes it off about two seconds after you get it on him:( If Carl even catches a cold, it could delay the Transplant. They will not start it unless he is in good health. Today while we were out, he would wear his "Hankie" over his mouth and nose some. So any little bit will help. Thismorning we were offered free tickets to the (Sesame Street Live) in Madison Square Garden. We turned down the tickets:( We thought it would be too big of a crowd of little kids at this event. What a shame, Carl would have Loved this. Maybe another time we will have a chance to do some of these things:)

Sara and Daniel have left to go back home to Mn today too. It was very nice meeting them, and having a chance to spend time with them and visit about all of the things that Carl will be experiencing with the transplant and treatments after. I have really learned alot from Sara, and I feel very Blessed to have met her and Daniel!!! She is a very special person, with a Heart of Gold!!!

May all of you have a wonderful Day!!!

P.S. Thank You's to

Sheila for the book you sent, I can't wait to start reading it!!!

Holly for the phone card, Abbey for the coupon book for Carl, and the valentines!!!

Krista & the Little Angels Daycare for Carl's package he received on Valentine's day, He loved the treats and very special card!!!

Jerri & Kaden for the Valentine & treats!!!! Carl Loved it!!!

You are all so thoughtful and Loving, we are sooo blessed to continue to have such support!!! Your Prayers are all here with us, even though we are far from home, we can feel all of your Love, sent right here for us!!!

God Bless you All

Kelly


Friday, February 14, 2003 1:07 PM CST

Happy Valentines Day to Everyone!!!!!

And a very special Happy Birthday to Jerri all our Love to you and wishes for a very special day!!!!! The Valentine and treats arrived today Jerri!!! How is that for perfect:)

Thanks to Auntie Janet for sending Carl's hospital things (it will help us feel Gods comfort and protection during Carl's SCT) And Auntie Joy Thanks for sending my shoes, it is great to have them to wear again


We are at the PDH for a couple of things. We had to do a 24 hour urine collection on Carl and then bring it back in today. Also I had to sign a release form, and have it notorized to have Carl's Stem Cells released from Mayo. It was a very strange feeling doing this, it really doesn't compare to anything else Ive ever had to sign for. His Stem cells are soo very important, they are Carl's life, they are his future.

Yesterday Tom had another kidney stone attack while we were at the PDH. He left here and walked back to the "Donald House" to lay down. When Carl and I got back there later, I phoned a local Urologist and made an appt. for Tom to get in later about 5:45. He went to his appt. but the Dr. was gone to an emergency:( So he waited and waited and was finally was able to be seen. It was probably about 10:00pm when he finally got back. By then the stone passed, and he was feeling better. The Dr. did an ultra sound and could not find any more stones. He told Tom he should have this followed up when he gets back home. And he told him he cannot believe that he didn't have this looked at the whole time we were in Rochester. He said that Mayo has one of the best Urology Depts. And this Dr. had lectured there before. So Tom was seen by a very reputable Urologist. So now he must get on this back home and have this all resolved. Today he feels a whole lot better!!!


We are planning on finding a place to go for lunch when we are done here today. And have the afternoon to take a little walk around our area. The air is cold outside, but it is a Beautiful Sunny Day!!!!

Tonight they are having a Valentines Supper at the "Donald House" It is soo nice that they do this so often!!! We appreciate it Very Very Much!!! I think they are having some Valentines activities for the Children too!!!

Have a Happy Day ...Remember to give your Loved ones a big Hug and Kiss:)

Love to you All

Kelly


Wednesday, February 12, 2003 9:27 AM CST

Good Moring to everyone!!!!!

I am not sorry to say that I missed the blizzard yesterday, But it is funny how we all, deep down, do get a little bit excited about being snowed in, not having to go to school, or having to go anywhere, just because you can't!!! It must be the child in all of us:) The temperature here is about 32 today. Not bad at all. We have heard some people complaining about the cold, but we are so used to it, that this feels like spring!!! Yesterday we walked around our whole block after we got back to the "Donald House" just to check out all of the shops, since it felt so much warmer to us. After we get done today at the PDH, we may venture around a bit too!!!

Carl is such a trooper, yesterday he had a bone marrow biopsy done in the morning. They do 4 aspirations here, two in the back, and two in the front on each side in the pelvic area. So Carl was bandaged in the back and on both sides in the front. But did that stop him.... No way, he was running around shortly after like nothing ever happened!!!

Carl is starting a new fan club here in NY. Some of the nurses, and clinic staff already know him and address him by his name everytime they see him:) That amazes me since there are sooo many kids that go through the PDH each day, how could they remember all of thier names? I am doing my best to try to remember all of the many staff we have been introduced to so far.

Last night back at the "Dondald House" a house "Pizza" supper was put on by... "The Boston Consulting group" They had 20 large Pizza's for everyone:) Then one of the guys that was with thier group, was a Magician type of guy. He was a Very good juggler, and did lots of tricks for the kids, and asked for thier participation!!! Carl even went up and did some things:) A couple of the girls that were also with thier group, kind of latched on to Carl and took him around to each activity they had planned for the kids!!! He made a valentine for Sam, and some frosted heart cookies:) Carl really enjoyed the night!!!

It is soo amazing that Carl has adapted soo easily to the different "Donald House", the PDH, and everything. He seems So Happy and well adjusted!!! He has asked for Sydney and Sam a few times, and thismorning he wanted to call "Uncle Chucky Wucky" (thats what Carl said Chuck) I told him that it is an hour earlier in Mn, it would be too early to start calling people:) We will try to call tonight!!!

Yesterday we met a new family from Canada, the moms name is Kim, there little girl is about 7 or 8? She has relapsed with NB, and they are here to see if they can find her help with some of these treatments. I never really imagined how many others there were out there with NB, and I cant believe how many we have met here, in just a couple of days. It is so heartbreaking when you hear of a relapse. This mom had a look of complete devistation on her face. Please continue to keep all of the families in your Prayers!!!!!

Wishes to you all for a very nice day!!!! Keep warm and Snug, and give your Children a big Hugg!!! Look them in the eye, and tell them how much you Love them. They are soo precious, and every day we are given with them, is a Gift from God.

Prayers and Blessings+

Love

Kelly


Monday, February 10, 2003 5:15 PM CST

Good Evening to everyone!!!!

Thanks for checking in on us!!!!

We have had a very full, exhausting day. We had appt.s at the PDH (Pediatric Day Hospital) starting at 9:00am but alot of the day was spent just waiting for what came next. Carl had a full body bone scan today, and will have a bone marrow aspiration tomorrow, then on Wednesday a MIBG scan. Today Carl was unable to eat due to needing sedation for the scan, needless to say he was very cranky:(
At the PDH (What a wonderful place) they put out Krispy Cream donuts in the morning, then they provide a lunch later:) It seems that alot of the patients spend alot of time here when they are here, like alot of full days, so it is very nice there is food available!!! But in Carl's case today, he could not eat anything til after his scan and everywhere he looked there was food, candy, or someone eating something.

Tomorrow will be a better day in the meal department!!! His bone marrow aspiration is at 9:00 so he can eat as soon as he is awake after that!!! Today we also met Dr. Kushner, and he seems like a very neat Dr.!!! You can tell he really enjoys his job, and Loves kids!!! We will meet with him more tomorrow. Most importantly today we got to meet Sara H. and another family from Mpls. Mn. We also met a mom Virginia, that is friends with Sara. Yesterday we met a gal Jody H. that is from Lakeville Mn. So we are really feeling quite at home!!!!! Most of the kids here have Neuroblastoma. Today at the PDH I heard a page over the intercom "could someone from Neuroblastoma please call..." That just amazes me. How Wonderful to be here with Carl, at a place that specializes in NB!!!

You know I have so much to talk about, this is just going to be the most Awsome experience, between being in NY, meeting all of these wonderful Dr.s and families with little children fighting just like Carl!!! It is soo sad though, that there is soo many of them, Please keep all of the children in your Prayers that are fighting this horrible disease.

I have just two more things to mention, then I had better get going:)

1. This one is for Sydney... We were looking out of our window at the "Donald House" and a building across the alley is a little shorter than our buliding, our room is on the 10th floor, anyway we were looking out and someone had thier little dog out on top of the roof, throwing a ball around to the little dog:) I can't believe all the dogs in NY city!!!! How cute!!!

2. Thismorning I happend to glance out the window between the curtains, (they were open just a crack) and What caught my eye was a "Cross" on top of a building. I did a double take, and then I told Tom, "This must be a sign"

Now glory be to God, who by his mighty power at work within us is able to do far more than we would ever dare to ask or even dream of...infinitely beyond our highest Prayers, desires, thoughts, or hopes.
Ephesians 3:20

God Bless

Kelly


Sunday, February 9, 2003 7:44 PM CST

Hi Everyone,

This is Auntie Joy. Tom asked me to update the website.

Carl, Kelly and Tom arrived in New York safely and are settled into their room at the Ronald McDonald House. Their trip went well and Carl enjoyed the airplane ride.

The RMH is located just a few blocks away from the Memorial Sloan-Ketterng clinic where Carl has his first appointment tomorrow.

Tom said they hope to get access to the website in the next day or two.

They may be reached at:
(NOTE: Just to clarify, the room number and the last four digits of the phone number shown below are similar, but not the same. The numbers shown are correct.)

Ronald McDonald House
405 East 73rd Street
Room 1007
New York, NY 10021
212-639-0107


Saturday, February 8, 2003 12:07 AM CST

Good Afternoon to all!!!

We are just about out the door to head to the cities!!!!

As soon as we get in our room at the NY "Donald House" and

settled in we will update with our phone No.s & address

Thank you for your Wonderful Wishes and Prayers!!!



God Bless

Kelly, Tom & Carl


P.S. Thanks to everyone at home for all of your help with the kids and at the Farm!!! We Love You All!!!!


Thursday, February 6, 2003 8:25 PM CST

Good Evening this Thursday!!!

I just got back from Head Start evening class with Sam!!! It was a very nice time, and a Great chance to spend some time with Sam one on one. He needs a little extra alone time with Mom as he certainly deserves it, and I need the chance to spend time with him as well. Teacher Teri read a very favorite book of ours, its called "I'll Love You Forever" When Sam used to go to Day Care at Jeannie's, she would read that book to the kids all of the time!!! Im glad I was here to share a special night with Just Sam!!!

Tomorrow Carl will have some CT scans in willmar. Then we will need to start thinking about packing. We are planning on driving down to the cities on Saturday and staying with Auntie Joy & Uncle Clair.

Thanks for checking in on us!!! And for your support and Steady Prayers!!!!

Stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.
1 Corinthians 15:58

Love & Prayers

Kelly


Wednesday, February 5, 2003 7:57 PM CST

Hello this Wednesday evening!!!

A busy day of paperwork, phonecalls, and scheduling. Carl is set up for a Dr. appt, bone marrow biopsy, bone scan and MIBG scan for next Mon, Tues, & Wed at the Center in NY. They wanted to get everything done those three days, but were unable to get the CT scans in with everything else. So Carl will be having those done in Willmar on Friday, then we will bring the scans along with us.

Things continue to fall together for our Big trip. I spoke with the social worker from Sloan Kettering today to arrange a room at the NY "Donald House" for Sunday when we get there. It is not yet confirmed available, but with everything else that has been working out positively, I have faith that we will have a room on Sunday!!!!!!!

Thanks to the overwhelming generousity of Jeff, (Syd's Dad) Our first flight to NY is covered!!!!! Jeff offered to give Tom his companion pass for this year, and Carl & I are able to use buddy passes!!!! Tom will be able to fly out on weekends and of course Sydney will be able to travel with Tom anytime. We also have the option to use corporate angel wings. They allow families with children needing to travel for medical care to fly free on one of thier jets. There motto is, "An empty seat is a lost opportunity" We are so very fortunate to be recipients of such a wonderful gift!!! Thanks Jeff for all of your help!!!!!

Today I talked to Auntie Joy!!!!! She also is going out of her way to give us some assistance!!! Joy will help us get Carl's medical records back from the Fairview University, so that we will have them to bring along with us for Monday. Joy also has offerd her "BIGGGG BAG" it is soo funny that she offered this to us today, last night we were jokeing about asking her if we could borrow it:) For those of you that don't know about Joys HUGE BAG she brought this with when we went to Arkansas to visit Nancy, Billy & Ricky last fall. It is sooo Huge, we laughed about little Joy hauling that BIG BAG around all week, and we still give her a bad time about it:) Thanks Joy we Love You!!!!!

Thank You for all of your Well Wishes!!!! And especially all of your many Prayers, we appreciate every one of them!!!

Though I am absent from you in body, I am present with you in spirit and delight to see how orderly you are and how firm your faith in Christ is. So then, just as you received Christ Jesus as Lord, continue to live in him, rooted and built up in him, strengthened in the faith as you were taught, and overflowing with Thankfulness.
Colossians 2:5-7


Love & Prayers

Kelly


Tueday, February 4, 2003 5:48 PM CST

Good Evening to all!!!!!

Carl is doing Great so I won't even talk about him!!!!

Jerri I know your Prayers were heard today!!!!!

First of all, I received a phone call from The U of M thismorning. They reviewed Carl's medical records and Protocol that Mayo has been following. Carl was never registerd on the protocol study that they were using and the U of M is unable to use this protocol on him, and do not have another one that they could use. Therefore he is able to receive treatment at the Memorial Sloan Kettering Cancer Center in NY. since they cannot treat him. So we are making plans to leave for New York on Sunday, for a Monday appointment at the center.

So I do believe all of this was for something, we are being led down another path, that has been chosen. I believe that there is a reason, and that It was part of the plan that I met Sara, by a mere chance!!!

After all of this happend today, I went and opened my email, to find a letter from a Father Mary Rookey. I had sent a email Prayer request to Father a couple of days ago. I found out about this by Sara's website, He is a Catholic Priest that has the charism of Healing. In this email I received it said:

I will include you and your precious little angel in our Prayers twice daily.

They also gave a phone no to call, and Pray with Father over the phone for Carl.

If anyone wants to check out this website it is

www.smcenter.org Then you click on "Father Rookey"

See what the Power of Prayer can do!!!!!!!!!!!!!!!!


When I walk to the edge of all the light I have and take a step into the darkness of the unknown, I must believe that either there will be something solid for me to stand on or I will be taught to fly.
Unknown

God Bless

Kelly


Monday, February 3, 2003 3:33 AM CST

Good Morning to eveyone!!!!!

Happy Birthday to Josh Retzlaff!!! Hope your day is Great Josh!!! Take Jackie out tonight for your Birthday:)

Thank you for continually checking in on us!!! And for all of your very Powerful Prayers!!! Thanks to Uncle Clair's help, We have a new "Heart on Hand" It is in the third photo position in photo's. I received this Prayer in the mail last week from Sara, it is a Prayer she uses for Daniel, and she wanted to share it with me!!! It is a beautiful Prayer, and can be used for anyone fighting cancer. I felt it would be most appropriate to use for Carl with his upcoming Stem Cell Transplant. To print the "Heart on Hand" just follow the directions in the caption below it. If anyone has trouble printing (some of us did with the first version, including me) let me know and I will try to help you, or I will print some out and get them to you!!!!

Tom is up getting ready to go to work, Looks like there is quite a layer of ice/snow on the vehicles. It also looks like Sam will be playing hookie again today from Head Start. Since Tom usually brings Sam to Franklin, but will be going in so early today. Carl's tube feedings run for 12 hours at night, so they usually are going til 8:00 or 9:00 depending on what time he gets hooked up. He has been doing so well with that, we have been getting the four cans of formula down him every night!!! Plus he is eating like a little beaver during the day. Sam will probably be gaining weight with Carl, the two of them are snacking constantly. One day last week, we were getting ready to go down the driveway to get Syd off the bus, and Carl was going to ride with me. He said "I want to bring a nak in the car" (nak is for snack) Like it was going to be a long trip:)

Wishing you all a very nice day!!! We Pray for safe travels wherever you have to go!!!!

This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. And if we know that he hears us-whatever we ask-we know that we have what we asked of him.
1 John 5:14-15

Love

Kelly




Friday, January 31, 2003 at 10:33 PM (CST)

Good Eveining and almost Good Night!!!

Happy Birthday to Randy Johnson!!!!!! Happy 40th Randy!!!!!
May your day be filled with Lots of fun celebration!!!!!
We Love You and miss you!!!


We are back home!!!!! It feels good to be back home again after a few frustrating days in Rochester. It was not all bad though, we enjoyed our couple days with Auntie Jill, and got a chance to visit with some of our friends at the "Donald House" to share our fears and strugles, and give each other comfort and encouragement!!!!! It is amazing what a bond you can form in such a short time, with others that are facing the same challenges with thier children. It is a support system stronger than I could have ever imagined, before this "Cancer world" started.

I have received wonderful support from other families that were not there with us this week too!!! Holly, Maya's mom has emailed me several times with very valuable information, and offered to do research for me as well. Tracy Fischer has been busy on the Internet searching for information and support. Tracy informed me last night on the phone that she was in touch with the "National Make a Wish foundation" to file a complaint to them about our local chapter. (Carl was denied a wish, a couple of months ago when we applied because he was not four, while other states grant wishes without age restrictions) needless to say, Tracy has become such an advocate for our family!! It is truly Amazing how much Love and Support our families have for each other!!! We are very Blessed!!!!!

We will be taking Carl to Fairview U of M next Thursday. We will meet with thier Dr.s to discuss the Stem Cell Transplant, and other treatments and options. We are thinking that we will not get to NY for this procedure. We are pressed for time to get this started before the cancer could start coming back. And we can't gamble to wait 3 or 4 weeks for paperwork to clear before going out there, because it would probably take another week or so to get it going once we got there??? But nothing is definate yet, we are just going with the flow, and believing there is a reason for everything. Like Dena put it in her guest book entry "The Lord always opens a door Wide open, when he closes a window" And I believe that with all my Heart!!!! Thanks Dena for that!!!

Besides all of this, Carl is doing fantastic!!!! He has gained all of his weight back, and is eating GREAT. He has been energetic, fun, playful, silly, and just a joy to watch!!! He's just having alot of fun!!! And it is sooo good to see that, because I know in a short time, he will be very sick for awhile (Stem Cell Transplant) So I am Happy that he will be going into the SCT in such good health!!!!!

I wait for the Lord, my soul waits,
and in his word I put my hope.
My soul waits for the Lord
more than watchmen wait for the morning.
more than watchmen wait for the morning.
Psalm 130:5,6

God Bless

Kelly


Thursday, January 30, 2003 at 04:54 PM (CST)

Hello this Thursday evening!!!!!

Hope everyone is Happy, Healthy, Safe, and Well today!!!!!

We will be staying in Rochester til tomorrow, Tom was able to take his Spraying Liscense class here at the Comfort Inn. So since we are already here, he thought he would get it done here.

We had Carl's hearing test today, and that was fine. No considerable change since the last screening!!!

Our meeting with the Dr.s went very well. They were very open to our wishes to put the Transplant on hold to gather more information. They did however express that we should not wait too long, as time is crucial when dealing with Neuroblastoma. You don't want to give it a chance to regenerate.

Our biggest disappointment today was with the Insurance company. We have run into some road blocks with coverage. We are now faced with not only where to go, but who is going to pay. NY is out of network, and for the transplant to be covered there, it would take referral from a prefered nework transplant provider. Which we discovered today that Mayo is not a Preferred transplant provider? They are nework and would be covered, but not a preferred and able to pave the way to NY for the transplant.

Well in the whole midst of things, we were referred to the U OF M Fairview (by our Insurance Co). They are a preferred transplant provider, and as it turns out, they are doing some studys with post transplant therapy as well. If this all seems confusing, our heads are spinning right now!!! So we are waiting to see if we can get in there to discuss going through them to get to the center in NY, or possibly having the transplant done at the U OF M. And then later trying to get post transplant follow up therapy (antibody therapy) still in NY??? The study that Fairview is on is called MIBG and I have read some about it but not a whole lot. It would be used during, and after transplant. It is another therapy that works with the immune system, and against the NB cells. Fairview does not offer the (antibody therapy) And we still feel very strongly about getting Carl on that. If insurance covers that is a another issue, but we will have to deal with that later.

The only decision we were able to make today, was that we feel Carl should have his transplant at a facility that offers some post transplant follow up therapy of some sort. Either the U of M, (our insurance co.'s prefered transplant provider) or NY if there is a way to get it covered there. We feel strongly about trying anything available out there, to work with, and after transplant to possibly prevent a relapse. We dont feel comfortable with what the plan here at Mayo is, to transplant, then wait and recheck, then wait to see if it relapses, we want to keep treating him after, and hopefully get him completly cured!!!

So our next step is to get to the U OF M, we need to move quickly on all of this, and we Pray that things do, and are the best possible plan for Carl!!!!!

We will keep updating, Please keep the Prayers coming!!!!!
Our strength and Hope comes from your POWERFUL PRAYERS

Love

Kelly


Wednesday, January 29, 2003 at 04:47 PM (CST)

Update at 10:25pm Please keep Uncle Chuck in your Prayers, he was admitted to the Willmar Hosp. today with a fever, and still fighting an infection in his foot. We need Uncle Chuck home home & healthy soon!!! We dont know what we would have done without his help all of these months with Syd & Sam!!! Get better soon Uncle Chuck we Love You!!!!!
Here is the room & phone number for Uncle Chuck in Willmar at Rice Memorial
room no. 333
Phone no 320-231-4333

whats with the 3's???

Now to the rest of the Robinson's:
1. wear your seat belts
2. watch out for ice
3. keep looking over your shoulder
4. not when your driving
5. watch out for run away shopping carts
6. wear a hat and mittens
7. don't eat leftovers older than 1 day
8. wash your hands
9. wash your hands again
10 get eight hours of sleep every night

try to stay out of trouble, we are running out of Robinson's rapidly

STOP THE MADNESS


Good Evening this Wednesday!!!



A very busy day at the Clinic with Carl. He started thismorning with the Renal function test. We decided to have a foley placed so the test would be most accurate. It turned out to be a miserable experience. He had this done a couple of months ago, and it was the same ordeal. I never told Carl what he was going to happen, but when we walked down the hall to go into the room in the urology area, Carl suddenly remembered that he had been there before, and he didn't want to be there again:( So anyway after that the test went fairly well. He had labs drawn, and then a heart echo. We got back to the "Donald House" about 4:00 so that all made for a full day.

Auntie Jill met us today about 11:30:) We have been enjoying her company!!!!! Tomorrow morning back to the clinic for a hearing screening, then on to meet with the Dr.s We don't know what to expect there, but we want to discuss what Carl has ahead of him, and address some questions about what we have learned with this treatment in NY. We just hope that Mayo will be open and supportive. We are seriously considering putting the transplant on hold, til we are able to consult with the center in NY.

Please Pray very hard that our questions are answered!!!

Have a nice evening!!!

Love to all

Kelly


Tuesday, January 28, 2003 at 03:26 PM (CST)

Update 9:42 pm We are at the "Donald House"!!! Carl is hooked up for the night, and all is well:) He was a little confused though, not sure about this different room, we are in room 307 He must have thought we were getting our old room back:)
Our phone no is 507-252-2189
Good Night for now!!!
Love

Kelly

Good Afternoon this Tuesday!!!!!



Good news Grandma Phyllis' surgery went well. I talked to Melissa a little while ago and she was in recovery then. We went to visit Grandma last night and I think she enjoyed all of us there. She was in very good spirits, and was feeling pretty good then. Keep the Prayers coming for her we all need her healthy, and back home again soon!!!!!

Please keep Shirley McVenes in your Prayers for her speedy recovery too!!! Shirley is Ricks Mom, she also had hip surgery today. Kiri said something today about how both of her Grandmas had hip surgery on the same day, only different hips:)

Please Pray for Ron & Jerri McKinley & thier grandson Kaden, Ron's mom passed away on Monday. Jerry has been there sooo much for our family with her wonderful notes, and has inspired us beyond words with her Prayer and spiritual support. You are in our thoughts and Prayers too Jerri, Ron, Kaden and Family!!!!!

We are getting ready to leave tonight for Rochester. Auntie Jill will be meeting us there tomorrow to help with Carl, and give us the moral support we can always count on her for!!!!!

I was blessed to talk to Sara Hammer today!!! She is the Mom of Daniel, the little boy from Mn. that has Neuroblastoma like Carl. I learned even more about the Center in NY that they take Daniel to for treatments!!! I will share her caringbridge website with you if you would like to visit it, and read about Daniel. Sara is a very very wonderful person, I think our crossing paths was not an accident, but a wonderful gift!!!!!

it is www.caringbridge.org/mn/danielhammer

Thanks for checking in on us, we truly appreciate all of your support and PRAYERS!!!!!!

We will update from the "Donald House" tomorrow!!!!!!

As it is written:
No eye has seen,
no ear has heard,
no mind has conceived
what God has prepared for those who love him
but God has revealed it to us by his Spirit.
1 Corinthians 2:9,10

Love

Kelly


Monday, January 27, 2003 at 08:14 AM (CST)

11:30am an update on Grandma Phyllis - she is scheduled to have surgery tomorrow morning first thing. It will be a screw & plate type repair, not a total replacement. Melissa is there today with Grandma!!!!!! Say some extra Prayers for Grandma's surgery, and a speedy recovery!!!! We Love You Grandma Phyllis!!!!!

Wishing Uncle Tom Johnson a Belated Happy Birthday!!!!! We hope your birthday was a Special one!!!! Love and Huggs to you:)

A Freezing cold, blowing, morning it is:( Tom went in to work early due to the snow. Sam is home with Carl and I today. I could not justify waking Carl up and taking him out in the cold, so Sam is playing hookey from Head Start today. I know the boys will enjoy each others company for another day:) More tents and construction sites!!! Another thing they have gotten into lately is pretending they are deer hunters. They each have little camo shirts that they like to wear. A couple of Sydneys large stuffed animals double as the poor deer they manage to bag.

This week we will get ready to head back to Rochester for Carls tests. He will have a Renal function early on Wed. then bloodwork, followed by a Heart Ecco. Then Thrusday a hearing screening, and an appt. with the Dr.s to discuss results and plan the Stem Cell Transplant.

Yesterday I stumbled across a website of another little boy from Mn. that is also fighting Neuroblastoma. I learned of a cancer center in NY that they consulted with, and have received treatment from. I had never heard of this type of treatment, so I did more checking and reading about it. It is called "Monoclonal Antibody Therapy" This center in NY has extensive experience in treating advanced agressive varieties of Neuroblastoma. They saw more than 80 children last year with Neuroblastoma!!! What this treatment is about are injections of antibodys that focus the patients immune system (which has been weakend by all of the chemo)against the neuroblastoma. There is alot more to this, but after reading about this therapy it makes sense.

The whole idea with this treatment is to prevent the Neuroblastom from relapsing. With this type of cancer, it responds fairly well to treatment, but also has the nature to relapse from a possible microscopic, chemo resistent NB cancer cell. Initially the rate of cure is 30% to 35% with a 50% chance of relapse. Then from there a 10% chance of survival if relapsed. I am on a MISSION to cure this little boy at all costs. This treatment is considerd in trials, or "experimental" since it has not been used enough to get fda approval. There is only 500 cases a year of NB, so that is part of the reason for lack of research and funding for research.

I dont know all of the particulars of this treatment, or if we will elect to do this. I do believe that this would follow the Stem Cell Transplant. I want to try to phone this other mom today to chat with her. And I want to phone this center in NY to get more info. The name of the place is called (Memorial Sloan Kettering Cancer Center) We also want to talk to Mayo about it this week and get thier insite on this type of treatment. So lots of stuff to think about. Please say lots of Prayers that we will find our answers to our questions, and find peace with our decisions. We realize that God knows what is best for us and has a plan for Carl.

Once again if you need Grandam Phyllis's room no or phone no here it is:

Phone NO. 507-537-9211
room NO. 211

From what I have heard, they are just waiting to evaluate her situation, and then go ahead with surgery but possibly not until tomorrow? I will update later if I find out any more on Grandma!!!!!!

The Lord is my Rock, my fortress and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the horn of my salvation, my stronghold.
Psalm 18:2

Love & Prayers

Kelly


Sunday, January 26, 2003 at 11:11 AM (CST)

Update: Grandma Phyllis is in Weiner Memorial Hosp. in Marshall, Tom is back home with Sarah & Katherine, John & Sheila are with Grandma right now. It sounds like any surgery will be delayed til tomorrow. You can call her directly here room no is listed here:

Room no. for Grandam is - 211
Phone no. is 507-537-9211

We will update with any changes later.


Good morning from all of us here!!!

A quick note to inform everyone, and to request prayers for Grandma Phyllis Robinson. Thismorning she fell going into church. Tom just phoned from Redwood, and she will be taken to Marahall from here. Her hip is broke. I don't know very many details, but we will continue to update as soon as we have any more news. Tom & Syd, John & Sheila, Chuck, and Denny are all with her right now. Tom will be coming home to switch vehicles and will head to Marshall.

Will update more later!!!!

Love

Kelly


Friday, January 24, 2003 at 11:06 AM (CST)

Happy Birthday to Cousin Tom Johnson, Wishing you a Very Nice Day!!!!!

Grandpa George Robinson's Cataract Surgery turned out very well!!!!!

Hello this Friday Morning!!!!!

I am home today with all three boys!!! Bryan is here for the weekend, he is out of school today due to conferences:) Last night his Adapted Floor Hockey team (Humboldt) beat Maple Grove 6 to 3!!! Bryan said that they played against Jessie Ventura's daughter Jade. He said that Jessie & Terry were there and Jessie was yelling at the ref's quite a bit. It must have been a Great game!!! His team is undefeated so far!!! If they do as well as his Soccer team did, they will go all the way to the State Tournament, and Ace that too!!!! These games are soo Awsome to watch!!! I will keep you updated on how they are doing, and I think it would be fun for a "Crowd" of us to go, if anyone would be interested, and support Bryan if they do play in the State Tournament!!! I will keep you all posted on that:)

Carl is enjoying Sam being home with him today, they are adding rooms onto thier tent, and calling one of my empty totes (that a hairspray bottle exploded in) from the Rochester trip home, thier bathroom, since it smells like a bathroom (Sam came up with that one) They are just so fun to watch:) They usually make such a mess of the living room, with all of thier toys and play areas that they create, but thats what little boys are all about, having fun and making messes, and It is wonderful that they can be together playing like this, these are very precious times to be treasured, even for Mom to just watch:)

I am making beef stew for supper, and have started that cooking, so the house smells wonderful!!!!! It is sooo Great to be able to do some cooking again, and be able to have it ready when everyone gets home!!! I think everyone appreciates being home together!!!!!

Have a Happy Friday:)

This is the day the Lord has made; let us rejoice and be glad in it
Psalm 118:24

Love

Kelly


Thursday, January 23, 2003 at 09:30 AM (CST)

Good Morning this Freezing Thursday!!!!!

It is sooo COLD out, it is hard to force myself to go out the door. Today I thought I would warm up the car, VERY WARM, and Carl and I will go visit Grandpa Bill Greer!!!!! He has been home from Woodale for a week now!!! He is doing very well, but is facing some restrictions on bending, and how much weight he can put on his hip, that will all change after he goes back for a recheck with the surgeon to evaluate his progress. Otherwise he is recovering just Great!!!

Speaking of Grandpa's, Grandpa George Robinson is having cataract surgery on his second eye today. It will be done in Redwood Falls this time, saving a trip to Willmar!!! So please keep Grandpa George in your Prayers, that this eye is as successful as the first one!!!

Carl is watching Blues Clues right now, it is soo fun to see him enjoy his shows in the comfort of his own livingroom. Last night we met our GOAL!!!!!! His feeding went very Good, we got 4 cans of formula in at the rate of 80!!!!! And so far no complaints of a tummy ache!!!!!

Keep Snug, and Stay Warm!!!!!

Therefore you shall be perfect, just as your Father in heaven is perfect.
Matthew 5:48

Love

Kelly


Wednesday, January 22, 2003 at 09:23 AM (CST)

Good Morning this Wednesday!!!

Carl is still snoozing:) He was in the habbit of sleeping in until 9:00 to 10:00 at the "Donald House" and it looks like he is gonna keep his schedule. It is quite an adjustment for me though, Im not used to getting up so early to get Syd & Sam dressed for school. I have to give Tom alot of credit for all that he has handled here at home. I have always told him that he had it worse than I did. It just takes alot of cooperation, and understanding, from everyone, and I think that everyone has done just Fabulous!!!!!

Carl is enjoying being home, he seems very happy!!! He is still experiencing some tummy pains with certain things he trys to eat:( But overall he is doing Great!!! Last night we increased his tube feeds to 60 for 3 cans of formula. Tonight we will try to go back to the normal rate of 80 with 4 cans. He tolerated last nights feedings just fine!!!
We want him to gain back the lost weight, and get him in the best of condition before having to go back in the Hospital for the "Stem Cell Transplant"

I talked to the "Transplant" Dr. yesterday about the upcoming schedule. Carl will need to be back in Rochester next Wednesday & Thursday for some Pre-Transplant testing, then we will meet with the Dr.s on Friday to discuss the Transplant, and find out when that will all begin. We are not looking forward to going back, but it will be the beginning of the end to all of Carl's treatment!!!! And the sooner we get done, the sooner he will be back home for good, and we will all have our normal life back!!!!! Auntie Jill will be coming with Carl and I next week, to give us company on all of his appt.s!!! Tom is unable to go, due to a class he needs to take at work on Thursday, to keep up his spraying license. So Auntie Jill, Carl & I will make the most of it, and have some fun together!!!!!

Wishing you all a very Happy Day!!!

...The God of all grace...will
himself establish...you
1 Peter 5:10

Love

Kelly


Monday, January 20, 2003 at 09:17 PM (CST)

Hello on this Monday Evening!!!

We are Home!!!!!! We wanted to surprise Syd & Sam and we sure did:) Tom parked the car around the shed so the kids would not see it. He went to pick them up in Franklin. They called me on the way home, and thought we were still in Rochester. Carl and I hid in Sams little Spider Man tent, that was in the middle of the livingroom:) The kids came in talking, and didn't really notice anything. Then Carl could not contain himself, he stuck his little bald head out the door of the tent and said "Hi Sissy" :) There were alot of tears, and huggs shared!!!! Very Priceless

Uncle Chuck & Auntie Janet helped us unload the third vehicle full of "Donald House" stuff:) We then enjoyed leftover Italian Spaghetti, that we brought home from the wonderful House Supper that the Fischers put on at the RMH last night!!!!! And it was just as Delicious as last night!!! Thanks again to Eric & his family!!!! We sure enjoyed seeing you all again!!! And Eric, you will be happy to know that Carl is feeling much better today!!! He played with his leap pad tonight, and we got alot of smiles out of him!!! Especially when we were hiding in Sams tent:) He was sooo excited to be home!!!!!

We will be very busy all week trying to get our house back to normal after bringing home soooo much stuff:( I vow to take very little back with us next time when we go.

It feels good to be home, I think it will be the best therapy for Carl!!!!!

Thanks for checking in on us!!!!

Many, O Lord my God,
are the wonders you have done.
The things you planned for us
no one can recount to you;
were I to speak and tell of them,
they would be too many to declare.
Psalm 40:5

Love

Kelly


Sunday, January 19, 2003 at 12:36 PM (CST)

Hello this Sunday Afternoon!!!!!

We are back at the "Donald House" for the day!!!!! Carl was given a pass out today, but will need to return later tonight, then will be discharged tomorrow morning!!!!!

WE GET TO GO HOME FOR A WEEK!!!!!

WE are packing up and moving out of the "Donald House" since we are able to go home for a week!!!!!!!!!!!!

SSHHHHHHHH !!!!!!! DON'T TELL SYDNEY OR SAM WE WANT TO SURPRISE THEM WHEN WE GET HOME TOMORROW!!!!!!!!!!!!!!!

When we do come back to Rochester, Carl will spend a couple of days outpatient in the clinc, for Pre Transplant testing, then he will go in for the Transplant if he is healthy enough at that time!!!!! Dr. Anderson said that the Transplant will not start until he is in perfect health!!!

So we will try to get back in "The Donald House" when we come back to Rochester, but with Carl's Transplant, we will spend most of the time at the Hospital with him, and getting a room right away wont be such an issue. So this gives us a wonderful opportunity to get our room cleaned out, and everything back home before the last wave of treatment. Allowing us to Re-group at home, and prepare for the Biggie "The Stem Cell Transplant" We were told to plan on about 3 weeks at least, but possibly more.

Needless to say we are SOOO Happy Today!!!! To quote Tom thismorning "That is sure a nice surprise to hear when you are not expecting it" (Being able to go home) It is also wonderful to have Auntie Janet here to help us pack, and move home!!!! Auntie Janet will leave later today, then Tom, Carl & I will head back home after Carl is discharged, and after we officially check out of our room here tomorrow!!!!! We should be back home in the afternoon!!!!!

Thank God for such wonderful Blessings!!!!!!!!

Thank you for continually keeping us in your Prayers, They are Positively working!!!!!! And Thanks for checking in on us as you always do!!!! We Love your notes and Words of encouragement, It makes our days Brighter!!!!!

Love & Prayers to you all

Kelly


Saturday, January 18, 2003 at 11:34 AM (CST)

Hello to all on this Saturday morning!!!!

Carl is continually improving, his counts are steadily rising, and so is his energy!!! Dr. Anderson thinks that Monday will be the earliest that Carl could be discharged. He offered a pass today to leave the Hosp. We settled for a pass tomorrow to join the House Supper, at the "Donald House"!!!!! Today Carl will be getting very spoiled by his Aunties:) Auntie Janet is here, and Auntie Joy & Auntie Judy have come to spend the day with Carl too!!!!!

Tom & I are going to get up to see Karrie & Bob Bauer, and bring them thier pork. We are planning to meet Randy & Chris Johnson too, and all go out to the Mall Of America for a little fun. We settled on the Mall for a meeting place since there are many choices for eating and entertainment, and since it is so darn cold out, we wont have to drive around anywhere!!!!!

Thank You Krista for the Beautiful Pictures of Carl!!!!! Yes I did get the one at the RMH too, and they are both sooo Precious!!!!! How thoughtful of you to do that, it will be a wonderful keepsake of this Christmas!!!!! I was not sure who had sent the first picture, so I am soo glad you sent a note with the second one!!!! Now I know who is responsible, and can Thank You for such a Nice Gesture!!!! For those of you that don't have a clue what I am talking about, Krista Daniels, our friend from the Redwood Gazette, took the Picture out of the paper (The adorable one on the front page) from our family Christmas at Woodale. And she took a couple of other pics off our website, and had Sears put together two beautiful pictures that are dated, and have a beautiful border on them!!!!! How Very Sweet!!!

Wishing everyone a Nice Day!!!!!

Beloved, let us love one another: for Love is of God; and everyone that Loveth is born of God...for God is Love.
1 John 4:7,8

Love

Kelly



Friday, January 17, 2003 at 02:04 PM (CST)

Good Afternoon on this Beautiful Friday!!!!!

Good news of much improvement!!!!! Your Prayers are getting through!!!!! Thanks Dena for your note, I do believe you were getting a sign of Carl feeling better!!!! His temp has been normal for over 24 hours now!!!! His Neutrophils are 1200 (the white cells that fight infection) and his other counts are all on the rise as well!!!!! The tube feeds are running and being increased as he is digesting just fine:) So with the counts recovering, so does everything else, it all just seems to fall into place!!!

The Dr.s said that Carl could possibly be discharged on Sunday if everything continues as it has been!!!! If not then on Monday!!!!! Eric Fischer, and his family are coming on Sunday to put on a House Supper at the "Donald House" So it would be wonderful if we all could be there for that!!! If not, that is ok, we are just sooo Thrilled that Carl is steadily improving!!!!

Auntie Janet is coming to stay with us for a couple of days!!!! Tom & I are going to get together with a couple of friends tomorrow night!!! Karrie Bauer, and Karen Jeffers
we have been trying to hook up with them for awhile, to get a pig to them that had been butchered. We thought we could get out for supper for a little break!!! It will be fun to see them again!!!

Have a nice day & Thank you for all of your very helpful Prayers!!!!!

God Bless

Kelly


Thursday, January 16, 2003 at 12:39 PM (CST)

Good Afternoon on this Thursay!!!!!

Carl is having red cells transfused right now, then he will be going for his GI scans. He actually is looking better, and is more like himself with the nurses. Asking a dozen questions and wanting to check in thier pockets for goodies!!! His temp is still up, but not as high as last night. I am hoping that he is finally on the road to recovery!!! Uncle Chuck just called and Carl is talking to him right now, so that is a Great sign, since he hasn't talked on the phone for almost a week!!!!!

We will update later after we hear more on the scans!!!!

Love

Kelly


Wednesday, January 15, 2003 at 03:24 PM (CST)




Update 6:30am Thursday
Last nights abdominal ct scan was good!!! It did not show any major problems. Today Carl will have some more scans on his G-tube/GI??? to look closer at the rest. He still is running a temp. but I think he is more talkative:) and seems happier!! Maybe it's because Dad is here too:) Last night I scammed a little ride on tractor from the playroom!!! So he has already asked to get up and get on it!!! We will update more later.


Update 6:15pm Wednesday
Carl's temp spiked again to 103.5 The Dr.s are ordering a abdominal ct scan, and are doing a stool culture. They are also adjusting his antibiotics. Tom is on his way here to be with us, I am relieved, and will be glad to see him. The Dr. told me not to worry, that is easier said than done. Even through all of this, Carl wanted to go out in the hall for a walk. Im so proud of him:) Will update more later.

Hello this Wednesday afternoon!!!!!


Another day, I am sorry to report, of fever and counts in the basement:( I really half expected a better day today, and I know the day is "not over yet" but Carl is just not up very much from yesterday:( His fever, spiked higher than yesterday even. The tube feeds were shut off last night, as he was not digesting the formula normally. They were started up again today, very slow, at a rate of 5 now. He was given a different anti-fungal drug. And has gotten some Zantac for stomach acids. He continues to get several antibiotics. It would almost be easier to know the sorce of infection, if there is one? and be able to then manage it, but at this point the Dr.s are not sure? The morphine was stopped yesterday, but he did get a dose today. Dr. Anderson was concerned about cutting it out too quickly, he felt he sould be weaned off slower, or he could get loose stools.

I did get Carl out of bed and he walked into the bathroom for a bath thismorning!!! I plan on trying to encourage him to walk down to the playroom tonight. I will see how he is feeling later, the activity planned is "Bingo" I just asked Carl "Do you think we can go play Bingo tonight?" He shook his head yes:) So that is a "Start" Maybe our friend Zane will be able to play too!!! He is still here having a Stem Cell Harvest today. Yesterday they had some trouble with the blood they harvested, clotting:( so today they needed to do another try. Please keep Zane in your prayers too, for him and his Mom Cheryl to get through this, and for it to be successful!!!

Wishing you all a very nice Evening!!!!!

How precious is your steadfast Love, O God! The children of God take refuge and put their trust under the shadow of your wings.
Psalm 36:7

Love & Prayers

Kelly


Tuesday, January 14, 2003 at 02:59 PM (CST)

Good Afternoon on this cold Tuesday!!!

Happy Birthday to Grandpa George Robinson!!!!! We Love you and hope your day is a nice one!!!!

Today is much the same as yesterday:( Carl is still having tummy pains, but the pain meds have not been requested as frequently. We have started his tube feeds up again, at a rate of 20. The regular rate is 80, so we are starting out very slowly. So far it has gone well. The morphine for the pain, also slows down the bowels, so getting him off the pain meds will also help his digestion return to normal as well. Carl is getting platelets transfused right now, and that should help his tummy too. He had some leaking again from his G-tube, and it was determined that it was blood. He had alot of air in there and that was causing some of the pain and probably the reason for the blood leaking out from all of the pressure. But that seems to have gotten better.

Hopefully tomorrow we can update with an improved report!! It is so hard to see him so miserable. We Pray that Carl can be back at the "Donald House" and running around with Sam again by this weekend!!!!

For this child I prayed; and the Lord hath given me my petition which I asked of him: Therefore also I have lent him to the Lord; As long as he liveth he shall be lent to the Lord...
1 Samuel 1:27,28

Love

Kelly


Monday, January 13, 2003 at 02:22 PM (CST)

Hello this Monday!!!

HAPPY BIRTHDAY Uncle Denny, We hope you have a Great Day!!!

New Pictures added!!!!!

Carl's counts have not started to recover yet:( He was having some irritation around his Mickey Button-G tube, We noticed that he was having some leaking around the bottom of the button where it goes into his tummy. Penny, Dr. Moir's nurse came in to take a look at it, she replaced his button with a new one. The valve was not working properly, and was causing some leaking. That is why he has had the redness and irritation. So we will be using some cream on his skin around the button to help clear up the soreness.

An xray of Carl's tummy was also taken, to verify his stomach is functioning correctly, since the tube feeds have been stopped due to a lack of digesting at a normal rate. He also started to get a transfusion of platelets, but it was shut down due to Carl spiking a temp during the transfusion. The nurse did not think it was a reaction to the platelets, but that he was ready for another dose of tylenol about that time, and his temp was going up again. Dr. Anderson saw Carl thismorning, and thinks it will be a couple more days before we see a turnaround with counts.

Auntie Jill spent the night with Carl, and I went back to the RMH. Jill said that in the middle of the night, Carl had got sick (puked) in bed. She didn't realize it, but thought he was just coughing. Carl had put his nurses light on all by himself to call the nurse to report his messy bed. He has been doing this on occasion when he thinks he is ready for another dose of pain meds too. We just have to laugh about it:) He is learning how to get what he wants!!!

We still have not got Carl out of bed, or out for a wagon ride, maybe by tomorrow he will be feeling better!!!!!

Wishing you all a Nice Day!!!

Love & Prayers

Kelly


Sunday, January 12, 2003 at 11:11 AM (CST)

Hello on this Sunday Morning!!!

Happy Birthday to Auntie Janet!!!!!

Happy Birthday to Bob Bauer!!!!!

Lots of Love to you both, We hope you have a Great Day!!!

Carl is about the same as yesterday. He will be getting some red blood cells transfused shortly. His counts have not started to come up yet:( He continues to get the pain meds for comfort, and tylenol when the temp. gets up higher. Today we have noticed some redness around his "Mickey Button" G tube, and also along his incision from surgery. We are going to do site care soon, and take a look at his Hicman lines as well. He is still getting a heavey duty antibiotic, in case of an infection going on. We pray that this does not turn into an infection like he had going on the last time he was down on counts. That time he was sooo sick, and was in the Hosp. for 11 days.

We are going to try to get Carl out of bed for a walk in a wagon in a little while. Probably just on this floor, we don't want to get too far out and risk exposing him to any other bugs since he has 0 defenses right now. Tom and the kids will head back home later today. Supper at Grandma & Grandpa Robinson's will be the traditional Oyster Stew, to celebrate all of the January Birthdays!!!!! We will miss being there, not for the Oyster Stew, but to see everyone:(
Auntie Jill is coming to stay with Carl and I tonight, she will spend the day tomorrow with us too!!! It will be good to have some company after the rest of the family is gone.

Wishing everyone a Very Nice Sunday, give your kids a big squeeze and tell them how much you Love them, time is sooo precious!!!!!

Behold, children are a gift of the Lord.
Psalm 127:3a

Love

Kelly


Saturday January 11, 2003

HAPPY BIRTHDAY Uncle Mark Welter today January 11th!!!!! Have A Great Day!!!!!

Hello on this Saturday at noon!!!

Carl is feeling a little better, his fever has been manageable, he has not got tylenol since last night. They want to monitor the actual temp. But if it gets too high they will give him tylenol. He has however been getting Morphine for the tummy pain, it started out at every four hours but has increased to every two hours as needed. It really helps to make him comfortable. When thier counts get this low, it really does a number on the tummy. We have been trying to continue the tube feeds, but just had to shut if off again because he got sick:( So today will be a day of rest and trying to keep Carl comfy.

Tom and Sydney just went to get some lunch to bring back. Sam is eating Carl's lunch right now. He will probably eat another lunch when Tom gets back with food:) Bryan & I have been watching (Detroit Rock City) It is kind of interesting to watch, I told Bryan that the first rock concert I ever went to was "KISS" what an experience, and sooo many years ago it seems:)

Have a fun day!!!! Will check back later:)

There is a right time for everything: A time to laugh...
Ecclesiastes 3;1,4

A Merry Heart doeth good like a medicine....
Proverbs 17:22

Love

Kelly


Friday, January 10, 2003 at 12:03 PM (CST)

Carl's room no at St. Mary's 3-127
Carl's phone no 507-287-4628

Good Afternoon from our 3rd home. St. Mary's Hospital:( Carl woke up thismorning with a temp. he also has been very pukey the past few days,he was waking up every hour or so last night getting sick to his tummy:( So with a phone call to the Dr.s we were advised to come in for admission. Carl has already received Zofran per IV for nausea, and a dose of antibiotic, to combat any possible infection. The Dr. has also ordered up fluids for feeding.

So we will sit tight, and waite for the counts to recover, and for Carl to feel better. Tonight Tom and the kids will be coming back. Sam will be thrilled to come to the Hosp. He enjoys all the activities the child life staff have for the kids!!! And he likes the freedom to go down to the playroom on his own, and find things to do:) This whole experience has sure been good for Sam. A few months ago he would hardly let go of my leg and seperate from Mom. Now he takes off on his own and is a secure, confident little boy:) But he still likes time with his "Momma"

Thank You all for your continued Prayers, it is in times like these, that Prayer is most comforting to us. We feel every one of them, and know that we are not alone in this journey!!!!

On my bed I remember you; I think of you through the watches of the night. Because you are my help, I sing in the shadow of your wings. My soul clings to you; your right hand upholds me.
Psalm 63:6-8

Have a Great Friday!!!

Love

Kelly


Thursday, January 09, 2003 at 05:22 PM (CST)

Good Evening this Thursday!!!!!

Happy Birthday to Uncle Rick McVenes!!!!!! We hope you have a Great Day!!!!!

Today was our busy cinic day:( Carl's counts are on the down slide, his white count is at 300 today. He has lost a pound or so, not a huge concern since he just completed a heavy duty round of chemo, and taking into consideration the rescent surgery. Dr. Moir saw Carl too, and thinks he looks just Great!!! We will be returning to the clinic twice a week to check blood counts, and still be keeping an eye on a possible fever, which would result in a Hosp. admission to get antibiotics, and fluids. Before the Stem Cell Transplant, Carl will need to undergo some more testing. Another hearing test, a liver function test, another renal kidney test, and another heart echo. So that will all be taking place in the next couple of weeks.

We did get to the park on Tuesday to feed the geese!!!!!!! When we drove into the parking lot, we had to be careful not to run one down. They seem to be taking up parking lot carousing. You don't even have to get out of your car, they come right up to you:) So we enjoyed our nice weather while it lasted. I heard that it will be getting cooler from here on out, I still will keep my hopes up for more sunny warmer days!!!!!

Fear not, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the falmes will not set you ablaze. For I am the Lord, your God.
Isaiah 43:1-3

Have A nice evening!!!!!

Love

Kelly


Tuesday, January 07, 2003 at 11:22 AM (CST)

Hello this Tuesday!!!!!

Back at the "Donald House" and very glad!!!!! We didn't get back til about 5:00pm last night, Carl needed a transfusion of red cells before he could go. Auntie Judy and Uncle Tom came to the Hospital for a visit yesterday!!! It was Great to see them, and Carl really enjoyed fooling around with Uncle Tom. We also got to see Karla with little Jacob, and Devin at the Hosp. yesterday!!! It was soo nice to see them again, Jacob had some follow up Dr. appts. and is really doing well. Jacob is a little Angel, he was born with multiple complications including Spinabifida. Some of the Dr.s were not very encouraging to them, and were giving up hope for thier little guy. But they did not give up for a second, and they are soo blessed to have this little precious miracle, and he is so Loved. If you want to read about Jacob his website is www.caringbridge.org/wi/jacobdavid A couple of neat things that I realized is that Jacob and our Tom share the same Birthday, August 8th, and Karla and Carl share the same Birthday 12-28 can you believe it!!!!!

Also more good news!!! I just met Cheryl in the kitchen here, Zane & Cheryl & Roy will be moving back into the "Donald House" today!!! And they are on the third floor too!!!! That will be soo Great to have them back again with us!!!! Another blessing from above!!!!!

Carl's appt. with Dr. Moir was swithced to Thursday, when he goes back to see his Ped.s Oncologist. They thought it would be easier for us to get them all in on the same day. I just hope the appt.s are all timely, it gets so hard to keep Carl entertained in a waiting room for too long. Especially if he is starting to bottom out on counts, he will probably not be feeling very well:(

Remember to count your blessings!!!! There are sooo many, I was just outside to take out the garbage, and it is just Goergous out!!!!!! Maybe we will have to get over to see the Geese today!!!!! Each beautiful day, (weather wise) is just one "easier" day closer to

(((((((SPRING))))))))

My child, be attentive to my words; incline your ear to my sayings. Do not let them escape from your sight; keep them within your heart. For they are life to those who find them, and healing to all their flesh.
Proverbs 4:20-22

Love & Blessings

Kelly


Sunday, January 05, 2003 at 04:12 PM (CST)

Hello on this Sunday afternoon!!!

We hope you have all enjoyed your weekend!!! They go by much too fast, even for us here. Tom and Sam left a little while ago to head back home:( Carl and I are always left with such an empty feeling when the rest of the family leaves. It is always quieter, but so lonesome:( The weeks go by just as fast, and Friday will be here before we know it, and the family will return again for another weekend. Carl has been talking more and more about going back home. I think he remembers all the toys left under the tree for him there. I dont think Carl minds being here though, it has been a routine, and security for the past five months, and he doesn't know any different. How thrilled he will be when he gets to go home after all the treatments,a world of adventure he has nearly forgotten about will be right there waiting for him to rediscover!!!!! What a day that will be, for all of us to Rejoice!!! Tomorrow we will go back to the "Donald House" Carl just leaned over and put his forehead to mine and said "I Wuv You" :) On Tuesday Carl will see the Surgeon, Dr. Moir at the clinic for a re-check. Then Thursday or Friday, back to the Clinic again for blood work, then to see the Peds Oncologist and get a push of "Vincristine" the final dose of chemo for this round. Then we will be keeping an eye on his counts, and temperature.

Have a Wonderful Monday, dont forget to tell your family how much you treasure and Love them!!!

Love & Prayers

Kelly


Friday, January 03, 2003 at 05:15 PM (CST)

"HAPPY BIRTHDAY" To Jessie Robinson today- January 4th!!!!! Hope you have a Great Day Jessie!!!!! We Love You!!!!


Good Evening This Friday!!!!!

Tom just ran over to the Honker to get some supper, then the activity in the playroom is "Pasta Pets"????? not sure what that will be, but the kids are all geared up to go find out. Our buddy Zane is also here for a couple of days to get Chemo. He is getting a strong round, simular to Carl's, then they will be harvesting his stem cells when his counts start to recover. The two of them will probably be back together again here in ten days when they bottom out. Then the two of them will possibly be having thier stem cell transplants together about the same time.

We talked to Dr. Khan yesterday, and Dr. Rodriguez today about what will be happening in the next few weeks. After Carl's counts recover, in about 21 days, he will then have the stem cell transplant. The transplant involves a higher dose round of chemo than he usally gets, which will wipe out all of his cells, and distroy his bone marrow. To rescue him, he will be given back (by transfusion) the stem cells, that had been harvested after the second round of chemo, and frozen. He will take longer to recover than after a regular round of chemo that he has been getting, and his immune system will be at a very high risk. After the transplant, Carl will receive some radiation to the site that the tumor was at.

The heart echo that was done last Thursday was normal!!!! I asked Dr. Khan if Carl is considered in "Remission" at this time, and she said Yes he is!!!!! So it is such Very Good News to hear that!!!!! One Blessing After another!!!!!!
Thanks be to all of the Prayers, and to Our Good Lord that listens, and Answers us!!!!!

If you were here today, you might get Sam mixed up with Carl. I gave Sam a haircut thismorning, fairly short, then when we were all done, Sam said, I want my head shaved just like Car Car. So the rest is history:) They look pretty darn cute together. One of the Nurses saw Sam out in the hall and said to him, "Boy you sure look like your feeling good today" she thought he was Carl:)

We hope you have a Comfortable Evening!!!!!

Love & Prayers

Kelly


Wednesday, January 01, 2003 at 08:00 PM (CST)



Thursday, January 02,2003 at 5:00pm
We are checked into the Hosp. waiting for Carl to be hooked up for pre-hydration, and then chemo. We have had a very nice day today!!!!!

Carl's room no. is 3-153
phone no. is 507-287-4432



Wednesday, January01,2003 at 8:00PM

Good Evening & Happy New Year!!!!!

We hope you all had a Great Day!!! We all had a very nice time at the Hawthorne Suiets:) The kids all enjoyed thier time in the pool, and we all enjoyed the Good food (as always) & Good Company!!!!! We thought that it would be a Great plan for next year too!!! Only we will have to get more of you Nieces, & Nephews to join us!!!! It made for a fun & safe "New Years Eve" Our kids are getting so used to celebrating "Ringing in the New Year" that we will have to keep something going just for all of them:) And it is sooo fun to look back at New Years past and remember things like (Uncle Rick throwing Bryan in the snowbank) :>)

Tomorrow Carl has Appointments at the Clinc for Blood work, then back to see the Ped.s Oncologist in the afternoon. He will be admitted to the Hosp. in the evening to start his sixth round of chemo. This will be the round of chemo that makes him sick with a fever about ten days later. Each time he has had this regimend, he landed back in the Hosp. around that tenth day:( I don't expect this round to be any different, so we will just be prepared again. Tomorrow we should hear results from the Heart echo that Carl had last Thursday, and we want to ask the Dr.s some questions about the Stem Cell transplant that will be happening sometime in the next few weeks.

I want to Thank the classroom of Sister Mary Fran at St. Marks School in St.Paul. Thank you soo much for your interest in Carl's progress!!!! We are so delighted that you check his website each day, and are especially Greatful for all of your Prayers!!!!! We received a most beautiful blanket for Carl that Chase & his Mom made for Carl. It came in the mail just in time for Carl to bring it to the Hospital and have it with him for his surgery. He wanted that blanket over his pooh blanket!!!! Then when we got back to the Ronald McDonald House, I discovered that we had forgot the blanket at the Hospital:( I called over to the Hosp. right away, and they checked in the room Carl was in and they found it!!!!! So they kept it for us at the desk with Carl's name on it, for when we could get back over to pick it up. I didn't want to risk loosing it so we did go back shortly after that to get it!!!! Also Chase Thank you for the picture of you, your brother and your dog!!!!! How adorable, what a Great picture!!! Your dog looks soo cute!!! Thanks again to Sister Mary Fran and her class for keeping up with us!!! God Bless You all:)

For you are the fountain of life; our light is from your Light. Pour out your unfailing Love on those who know you! Never stop giving your salvation to those who long to do your will.
Psalm 36: 9-10

Happy New Year!!!!!

Love

Kelly


Tuesday, December 31, 2002 at 01:36 PM (CST)

Hello on this Beautiful New Years Eve!!!!!

We are very Excited to begin a New Year!!!!! With a New Year brings much Hope and promise of New Beginnings!!!! We are Praying for Health and Happiness, the two go very much hand in hand! The Support, Love and Prayers we have received are the reason we are as strong as we are today!!! Our strength and energy, could not be possible without all of your Help!!!!! Please know that we appreciate and feel all of the Prayers that has been sent our way. May God Bless each of you for all the Love that you have given!!!!!



Happy New Year "2003"



Love and Blessings to All

Kelly, Tom
Bryan, Sydney
Sam & Carl


Sunday, December 29, 2002 at 07:48 PM (CST)

(New Pictures Added!!!!!)

Hello on this Sunday Evening!!!

Hoping you all had a nice weekend!!! Carl had a very nice Birthday, Thank you all for your cards, and notes and phone calls to wish him a Happy Birthday!!! Auntie Janet and Grandma Phyllis came to spend the day with Carl. We didn't get to go to Shakeys Pizza, we discovered that it has been closed:( But we still had pizza, Matt & Mandi recommended a place called Mr. Pizza. It was very good, and the kids had lots of fun playing some arcade games there too!!! The Fischer's were not able to visit, Tracy & Eric called, and Eric was getting a cough:( Hope your feeling better this week Eric!!! Eric talked to Carl on the phone though, and wished him a Happy Birthday!!!

Today we got out for a little while too, we went to the Oxbow Zoo in Byron. It was pretty nice outside, very unseasonably warm, so it felt good to get outside. The kids enjoyed getting out, and it always does them some good after being confined inside for too long. We are very blessed to be able to stay here at the RMH. But we sure are looking forward to getting back home, and having a little room for everyone to spread out again. We are starting to think about seeing an end here to Carl's treatments. We still have a ways to go, but we are on the down side now, and it feels soooo good!!!!

We are looking forward to Tuesday when we will get to see everyone for New Years Eve!!!! We will pray for continued Great weather for all of you having to travel!!!!

Have a Nice Monday!!!

Sing to the Lord a new song; sing to the Lord, all the earth. Sing to the Lord, praise his name; proclaim his salvation day after day. Declare his glory among the nations, his marvelous deeds among all peoples.
Psalm 96 1-3

Love

Kelly


Saturday, December 28, 2002 at 09:49 AM (CST)

Good Morning this Saturday!!!!!

First of all I wanted to wish Nick McVenes a Very Happy belated Birtday!!!! Sorry I missed you Nick, Hope your day was a really special one!!! Last night we were looking at some home movies, (I got my camera working) and we found an old tape of when we were all out at Uncle Denny's. You kids all took turns riding Sparky. It was sooo fun to watch!!! It must have been from about six years ago, you all look soo little, and cute:) Good Times!!!!!!

A very Happy Birthday to Karla, you and Carl share the same Birthday!!!! Have a Great Day!!!

Carl is doing very well, he is feeling better each day!!! He woke up today without much stiffness, so I do believe his neck soreness was probably from post surgery. And his temp. has been consistently normal as well!!!! So he is recovering with flying colors!!!!

Yesterday Uncle John, Auntie Shiela, Sarah & Katherine came to visit us!!! We went to Applebees for dinner, and they sang Happy Birthday to Carl!!! Today we are expecting a visit from Tracy, Eric & Mark Fischer, and Auntie Janet called to tell us that she, and Grandma were going to drive up to visit Carl on his Birthday too!!!!!

I thought we would take Carl to Shakie's Pizza for supper, (does anyone remember that place) they have one here in Rochester. I can remember my parents taking us kids there when we were pretty little. Back then they had a player piano, with a little monkey band that sat on top and played music, and the waiters would come out with a Birthday Sundae and sing to you, I remember they made me stand up on my chair while they sang to me one year:) So we will be sure Carl has some celebrating today!!!!

Have a wonderful day!!!!!

Love

Kelly


Thursday, December 26, 2002 at 08:36 PM (CST)

Good Evening from the "Donald House"

Carl was discharged today around noon. First Dr. Kahn set up a Heart echo to be done at St. Mary's. They like to keep checking on the heart, and other body systems to watch for damage, as chemo can cause side effects. So Carl had that done before we left the Hosp. and it is always better to get those tests done there, instead of out patient at the clinic. The clinc can be very hectic. I also talked to Dr. Kahn about delaying round 6 of chemo til Thursday of next week. They were going to get started on Monday, but three days will not make any difference on his schedule. So the upside of that, will be that Carl can join everyone at our New Years Eve celebration at Hawthorne Suites!!!!!

Some of the Robinson's have reserved rooms there, as well as our family!!! They have an indoor water park, for the kids to have a ball!!! The only bad thing is that Carl can not go in the pool, due to his Hicman:( But he will enjoy being there with his cousins, and watching them!!! He maybe can get his feet wet a little bit!!! So needless to say, I am exstatic that we will not spend New Years in the Hospital!!!

I have decided to stay here in Rochester (RMH) this weekend. I feel Carl really needs to recoup, and his best shot of getting rest will be right here. We had talked about trying to have a birthday party for him at home on Saturday, but since so many of the family will be here on New Years Eve, we thought that would be the perfect opportunity to throw him a party then!!! So that will be the plan for this weekend and Carl's Birthday Party!!!!

Carl is coming along very well. I am concerned about some stiffness he is having in his neck, and he complains of his head hurting some. It seems whenever he wakes us from either the night, or a nap, he is stiff and very sore in his neck and shoulder area? I talked to the Dr.s about this, and they feel it is just muscle soreness from post surgery, and that it will get better. Carl also had a temp this afternoon, it was 99.8 so I will be keeping an eye on that as well. I am sure a few days of good rest will help him bounce right back, as he always does. The fever does concern me though. Whenever he gets a fever, and it is chemo related, I know that it's from that, and it will get better, but being post surgery, you have concerns of it being an infection.

Have a great evening, and a Happy Friday!!!

Children's children are a crown to the aged, and parents are the pride of their children.
Proverbs 17:6

Love

Kelly



Wednesday, December 25, 2002 at 11:17 AM (CST)

Merry Christmas to Everyone!!!!!!

You are the light of the world.
Matthew 5:14

Wishing all of our family & friends a most Beautiful Christmas, Happy, Healthy, Prosperous New Year!!!! We are looking forward to 2003 with our hearts filled with hope, Love and Strength from our Lord above!!!!!

We were just given another Blessed Christmas Present!!!! Dr. Kahn was just in to see Carl, we asked about the results from the bone marrow aspiration that was taken on Monday. She said that the bone marrow is Clear!!!!!! Our Prayers have continued to be answered!!!!!

Our Christmas Eve was very nice. We made snacky plates up for all of us to munch on, and snuggled in to watch "Shrek" of course:) Then the kids fell asleep, with visions of sugar plums dancing in thier heads:)

Tom & I went to the Midnight Mass service at the St. Marys Chapel. It was very beautiful with all the carols before the service. The church was just about full, with many of the hospital staff in attendance. We also spotted Helen, a lady that lives at, and is a caretaker of the RMH. So Im sure that a Carl managed to get a few more Prayers (even being away from home) requested just for him:) It is comforting to look around and see so many familiar faces:)

Santa was very good to the kids here!!! Carl got the "little Piano" he had been asking for, Sam got his "Spider man tent" he was looking for:) Sydney got a really neat Shrinky Dink oven set!!! She already has started to make some jewlery. Bryan we will keep your present for when you are back:) Then just when we thought we could not fit another toy in our room here, Santa came back down the hall, pushing a sled filled with Toys!!! Each child could pick out 3 toys!!! I think Carl snagged an extra toy in the process:) Bryan you got a CD player/boombox!!! We will keep it for you!!! Jen from child life took pictures of the kids with Santa, and got a family picture with Santa too!!!

We are planning on a very nice day here!!! The kids will not be bored anyway. We will be able to go over and get Dinner from the "Donald House" at 1:00, and bring it back here to enjoy. Then Matt & Mandi are planning on a visit!!! It will be fun to see them:)

Tom and Sam are going home tonight, so that Tom can go back to work tomorrow. Syd will stay here with Carl & I and we will probably be able to go back to the RMH tomorrow:) We will evaluate how Carl is doing, but are thinking that we will come back home on Friday for the weekend!!!!

Wishing you all a fun day!!!!!

And the child grew and became strong, filled with wisdom; and the favor of God was upon him.
Luke 2:40

Love & Blessings to All

Kelly



Tuesday, December 24, 2002 at 10:20 AM (CST)

Carl's Room No. 3-103
phone no. 507-287-4599

Update: 5:45pm Carl got out for a little walk!!! He walked to and from the playroom. We colored Christmas pictures with Carl. We are going to put together some snacky trays for later, with meat & cheese & crackers, almost like being at Auntie Janets:)

Update: 3:oopm Carl was up out of bed for a couple of hours this afternoon!!! They had Bingo here for the kids, and the three of them made a haul:) Carl is back in bed resting now.

Good Morning this Christmas Eve

First a couple Holiday Memories from Tom:) In thinking about what my favorite Holiday Memories are, you know everyone has mentioned going to Grandma & Grandpa Wolters, I can remember going over to Uncle Willard's and Aunt Ollie's during the Christmas season and all year. But what meant alot to me was when my older brothers and sisters got old enough to have jobs, and move away from home, which was great, it ment more room for the rest of us (chuckle, chuckle) but it ment that when they returned, they would always spoil the heck out of the younger kids, by spending part of thier earnings on us:) My brothers and sisters were always willing to share what they had, and the past five months they have been there for our whole family. We will miss being with all of you this year at Janet's, but look forward to many future Christmas' of being together!!!

Carl is still resting peacefully!!! He has not been up yet, but we are going to get him up to change his jammies and bed here in a little bit. He has been getting pain meds pretty steady, and seems comfortable. We are going to try to get him up out of bed, and try to have him walk a couple of times today too.

We are settled in here at St. Marys for the day, we brought clothes and PJ's for Sam & Syd, and we will all be spending the night here with Carl. We are going to ask the nurse later if we can take Carl to mass here at the St. Mary's Chappel. They have a midnight mass, and then several scheduled for christmas day!!!

Have a Wonderful day with your loved ones!!! We will check back later:)

Love

Kelly




Monday, December 23, 2002 at 02:49 PM (CST)

Good Afternoon!!!!

Carl's room no is 3-103
phone number is 507-287-4599

We are back in Carl's room, (room 3-103) with Carl. His surgery went soo good!!! He did not need to go to the ICU since everything went so well. Dr. Moir gave us a very good report!!! The tumor was removed, he said that it was out by about 10:30am, it did have active cancer cells inside it. He also removed a few lymph nodes in the area that were positive as well. He feels that he got everything. An ultrasound was done of the liver, to check for any spots that could be hiding deep inside. He said that nothing was found in the liver, it looks clear. So Carl should not need to have any radiation, he said, since there is nothing there to do radiation on!!! Carl also had a bone marrow aspiration repeated while was under, and we should get back those results by tomorrow. Dr. Moir said that the surgery went perfect!!!! We are very Happy!!!!!

We are very pleased about the report, and sooo excited that he is able to be on the regular floor, and not require to be in the ICU. This will make it easier on the whole family to be able to be together with Carl. We are all going to sleep here tomorrow night with Carl in his room, and await the arrival of Santa:)

We are so very blessed, And want to Thank You for all of your Get Well Wishes, they are Greatly appreciated!!! It touches our hearts, and brings tears to our eyes, to read
the guest book and get so many wonderful wishes, and know that Carl is in your Prayers!!!! There is power in numbers and Prayer is Powerful!!!!! Gods Blessings to all of you!!

We will keep updating on how Carl is coming along:)

P.S. Check out Eric's pictures on his website, there is a link on the bottom of this page to take you directly there!!!

P.S.S Check out www.redwoodfallsgazette.com Carl has a story in todays issue, and Krista put it on thier website too!!!



Love

Kelly





Sunday, December 22, 2002 at 08:21 PM (CST)

Good Evening from the "Donald House" Auntie Janet, Bryan, Sydney, Sam & I are here for the night, while Tom gets Carl settled in at St. Mary's to get ready for surgery tomorrow morning. I don't know exactly what time he will go in, but I know that he is second in line. It will be some time in the morning. The surgery will take from 4 to 6 hours, and Carl will spend the first 24 hours in the ICU, before he can be moved to the third floor.

Santa has been making his rounds here in Rochester already tonight!!! He visited Carl at the Hosp. earlier, and brought him a little Peef Bear and book!!! Then a little while later he came by the RMH to visit the kids here:) Bryan and Syd were here alone for a little while, Syd said that they heard jingling in the hall, Bryan and she looked at each other, then opened the door, to find Santa out in the hall giving away candy:)

Our time at home was very nice, very short though. Not enough time to do everything we would have liked to do. The kids opened thier presents at home yesterday. Grandma Phyllis was with us in the afternoon, also Auntie Janet, Uncle John & Auntie Sheila and the girls, and Uncle Chuck. Of course the kids opened more presents from thier spoiling Aunties and Uncle!!!

Auntie Janet came back to Rochester with us today, and will stay with us tomorrow to help out with the kids. Auntie Jean is coming through on her way to Morton and will be stopping by to see us too, and then the two Aunties will leave together for Morton. It will be nice to have the help, and moral support tomorrow:)

Thank you all for your continued Love, Support and Prayers!!! Tomorrow's surgery is a real Big day for Carl. please Pray extra hard, as we will be doing, We are hoping & Praying for a Christmas Miracle!!!!!

God Bless+

Kelly


Saturday, December 21, 2002 at 08:16 AM (CST)

Good Morning to all!!!

It sure is beginning to look alot like Christmas around here, the white ground helps to complete the picture!!! Yesterday when Sam and I got home from Rochester, I started to unload the car, Sam followed me into the house. Then he darted back outside and jumped on his bike and road around the driveway in the new snow, there had been no tire tracks in it yet!!! Of course he was without jacket, hat, mittens, boots, every mothers nightmare:) It was so funny, I wish I had the camcorder right then!!!

Carl escaped Rochester without transfusion yesterday!!! He was excited to be home too!!! Bryan will be coming home today, and tonight the kids will open thier presents here at home!!! Sydney and Sam have been driving us crazy, asking if they can "Open Just One" but they are excited!!!!

I am working on my family adding thier "Holiday Memories" to the website too!! Check out Sydney's journal, that is very true, it almost sounds like a joke, but its true:) I, like many of you, have lots of Holiday memories, One of my first memories was when I was about 3 or 4. My Grandpa Loeffler, (my Moms Dad) who was not very well at the time, insisted on getting Holly and I a Christmas present. He sent my Godmother (Aunt Bea) out shopping for us. He wanted us to have dolls. She picked out these two, (walking dolls) they were sooo cute, and we had soo much fun playing with them. Both Holly and I regret ever playing with them though, of course we don't have them any more because we played with them too much. We wish that we still had them because that was the last gift we ever got from our Grandpa.
I also have wonderful memories of baking with my mom every year, she has a Great bananna bread recipe that is just the best. (I missed baking this year) When I was little, my mom used to use, the old Welches juice cans to bake bread in, before that my Grandma Loeffler did the same. The loaves turned out soo good, they came out in the shape of the can, and you could slice off round pieces:) I think some of my cousins still have some of those old juice cans. Another memory is how our family would visit relatives around the Holiday's. We would try to make the rounds and visit every family!!! It was always so fun to see everyone's Christmas tree. My Mom would say "Lets go see Auntie Marge's Christmas tree" We loved visiting our Aunts and Uncles, they were so special to us!!! You know what, I could go on and on, there are so many wonderful memories!!!! I Love Christmas!!!!! One thing that I Love is old home movies of Christmas. Anybodys home movies of Christmas!!! It is soo fun to watch, from 30,40 50+ years ago, everyones relatives look like your own relatives:) I think it would be fun for all of us to collect up our Christmas footage from years past, and get together and watch "Christmas home movies". Just a thought, for a future get together!!!! :):):):):) One final memory that I will never forget, was just last year. I was working (hauling mail) on Christmas eve. I had a big box for Dorothy Caven, and drove up her driveway to bring it up to the house. Dorothy answered the door, and was soo Greatful to receive her box. She then invited me in to join thier family for dinner, Thier whole family was seated around the table, just ready to start eating. (it was about noon) I would have loved to, but couldn't sit down and stay for dinner, as I had to keep going. So Dorothy asked if I would like to take a plate along to go. So she fixed up a beautiful plate of wonderful food for me to take along with me. It was sooo good, talk about warming a persons's heart, sole, and spirit!!! I will never forget that, it certainly made my day!!! God Bless all the Postal workers this very busy season!!! I know how very hard they work this last week before Christmas!!!! But with it brings unexpected surprises:)

Tomorrow we are planning on spending time with Mom & Dad with Holly's family at Woodale. We will go over after church. Carl needs to get back to be admitted to St. Mary's Sunday about 3:00. They want to clean his bowls out to prepare him for surgery. Last night Daryl Thul called to ask about Carl. He thought with Christmas coming, this would be a perfect time to do an update on Carl in the Redwood Gazette!!! He is sending Joshua Dixon over to Woodale to take some pictures:) So you will have to watch for Carl's story in one of the upcoming issues next week!!!

We hope you all have a Wonderful Day!!! Enjoy these special moments as we prepare for the coming of our Savior!!!

Sons are a heritage from the Lord, children a reward from him.
Psalm 127:3

Love

Kelly


Thursday, December 19, 2002 at 10:31 PM (CST)

Hello this Thursday Evening!!!

New Pictures added!!!!

Today was very nice, not a thing we had to do. We took the kids to a Elk farm north of Rochester, to just drive by and see the many Elk in this huge pasture. We drove to Owatonna, and went to the famous Cabelas. The kids enjoyed looking at the many stuffed animals around the store, and the fish in the aquariums there. It was alot of fun!!!

When we got back to the "Donald House" Tom made a tuna hotdish for supper. The kids spent the rest of the night playing, very nicely I might say:) We will be getting ready to head back home tomorrow. Carl has an appt. in the morning for blood work, then at 1:30 to see the Peds. Oncologist. We are praying that his blood counts have improved since Wednesday. If not he may need another transfusion. But if all is clear, we can leave for home. I may leave early in the morning with Sam, but if the weather is bad, (it is kind of sleety tonight) I will wait and drive back with Tom & Carl.

Thank's Peggy and Krista for the surprises!!! The boys will enjoy the rides very much, and they were playing with the animal set tonight:) They were pretending they were at Cabela's again, it was really cute!!!

Wishing you all a very Happy Friday!!!

Love and God Bless

Kelly


Thursday, December 19, 2002 at 06:43 AM (CST)

Good Morning to everyone!!!

Sorry for no update yesterday afternoon, when we got back to the "Donald House" we found out the Caring Bridge Website was down. So if you tried to get on, and couldn't that is why.

We have both good news and bad news. The good news is the scans looked "Almost Miraculous" to quote Dr. Moir. The tumor is virtually gone. He was very encouraged by the reports, and explained what would happen in surgery. He will go in and "Mop Up" as he put it. He will clean up anything left, he will do some biopsy's of liver or any other tissue that looks suspiscious. He will do a ultrasound of the liver to check for any deep spots that may have the cancer cellls. If any spots are found, he explained radiation would be done on those areas. So anyway we were very very Happy about the results and about our consult with the Surgeon. He is wonderful, you feel very confident and satisfied with his explainations!!!

The bad news is that Carl's blood has not yet recoverd from the last chemo round. His white count is not where it should be to be doing surgery. The surgery will knock him down too, so they would like his blood to be at higher levels when going into surgery. Carl required both red cells and platelets yesterday, so he was transfused after his appt. at the clinic. The Dr. also wanted us to give a double dose of gcsf shot, to boost the bone marrows production of white blood cells. This we will do for two days, then Carl will need to be seen back at the clinic on Friday for blood counts agian. So cutting to the chase, the Surgery will be delayed until Monday. Thus keeping Carl in the Hospital til Thursday. So we will not be able to come home for Christmas.

We are disappointed about that, but at the same time, we couldn't ask for a better report from his scans. We are so Happy that everything looks so good. We are sure that the Hospital will make things special for Carl. Maybe even a visit from the Big Guy himself "Santa Clause" We expect to be able to go home this weekend for Saturday and then probably need to be back on Sunday. We will have our Christmas with our family at home sometime this weekend, and then Santa will find us in Rochester!!! We will also try to visit My folks at Woodale and open presents with them, with Holly & her family too.

It will be a non-traditional Holiday for us, but I am sure this year will be one that our kids will never forget. We say there is a reason for everything, and I do believe that to be true here as well. The RMH is serving a very nice Christmas dinner here, and they will be providing take-out containers for families in the Hospital. Matt & Mandi had previously offered our family to join thier family at Mandis folks for Christmas day, if we couldn't get home. Thanks you guys, we Love you!!! But with Carl in the Hosp. We will stay and have dinner there with him. The nurse at the Infusion Therapy Center last night told Tom that the Hospital is not a bad place to spend Christmas!!!

Please Keep Grandpa Robinson in your prayers, he will be having cataract surgery in Willmar this morning. Auntie Joy came out to Morton to take him for surgery today:)

Have a wonderful day!!!!!

The Lord is nigh unto them that are of broken heart.
Psalms 34:18

But in all these things we overwhelmingly conquer through Him who loves us.
Romans 8:37

Love

Kelly

P.S. Keep the Memories coming!!! We have enjoyed:)


Tuesday, December 17, 2002 at 09:07 PM (CST)

Hello this Tuesday Evening!!!

Thank you for the Great "Favorite Holiday Memories" We have had fun reading them!!! Keep them coming!!!!! :)

We are back in the "Donald House" tonight, tomorrow Carl will have a MIBG scan, this looks at soft tissue. They want to take a good look at the mass that will be removed. Then while he is still under anesthiesa, he will have a ct scan done as well. We will meet with the Peds. Oncology Dr.s in the afternoon, and also talk with Dr Moir the Surgeon after that. So we should hear some results on the scans tomorrow too.

Auntie Janet stopped by to see Carl last night, while we were still home, she mentioned that our neighbor Linda Radermacher is having surgery in Redwood either today or tomorrow I think? Please join us in giving lots of get well wishes, and Keep Linda in your Prayers for a speedy recovery!!!

Have a nice evening, we will update tomorrow after Carl's Dr's appts, in the afternoon.

And the city has no need of the sun nor of the moon to give light to it, for the splendor and radiance of God illuminate it, and the Lamb is its lamp.

Revelation 21:23

Love

Kelly


Sunday, December 15, 2002 at 09:08 PM (CST)

Happy Birthday to our cousin Tammy Thelen on December 16th

Happy Birthday to our neice Mandi Robinson on December 17th

You are both Sweeties and we Love you!!!

Good Evening from Franklin:)

Tom and Sydney were getting ready to head back home this afternoon, and I said "How about if Carl, Sam & I come home too" We actually don't need to be to an Appt. til 2:00 on Tuesday!!! We looked at the clock, and said, if we leave now we will be back in time for supper at Grandma & Grandpa's. Now what sounds better than that? We also thought it would be fun to surprise Grandma, since her Birthday was on Friday, and we were not there to help her celebrate! So we all hurried to pack all of us up, and drove home!!! We had supper in Morton. Auntie Sheila, Uncle John, Sarah & Katherine were there, as well as Uncle Chuck, Uncle Ken, Uncle Denny & Matt!!!!! We had taco's for supper, and Uncle Ken brought some freshly made Krumkakka!!! We even had a group of carolors stop by and sing "Jingle bells" What a fun night, we missed all of the rest of the Robinson's. But we are so looking forward to seeing you all at Christmas. We pray that everything turns out well with Carl's surgery so that we can make the trip for a couple of days!!!!

Tom and I have come up with a fun idea!!! In light of our family outing yesterday, and Auntie Jeans guest book entry, (no pun intended) We thought it would be wonderful if all our family and friends would also add an entry, and share with Carl & everyone, a "Favorite Holiday Memory" We thought it would be fun for us, and all of you to read!!! Someday, when Carl is a "little old bald man" he can look back at all of the Journals his Mom wrote for him, and all of your stories too!!! So think about it, and Share your "Favorite Holiday Memory" :) We would Love it!!!

Rejoice in the Lord always. I shall say it again Rejoice! Your kindness should be known to all. The Lord is near.

Philippians 4: 4-5

A good night to all, and to all a good night:)

Love

Kelly


Saturday, December 14, 2002 at 08:05 PM (CST)

Hello on this beautiful Saturday evening!!!

We just got back to the "Donald House" from a very nice family outing:) We left a little before noon, and drove to Harmony. We enjoyed the beautiful country sceanery, and farmland. We were lucky enough to spot a few buggys at the local grocery store, that were tied up to a hitching post outside in the parking lot. Next to cars and pickups parked in the spaces next to them. We did see one buggy driving down the road too. As we drove around the area, we could pick out some of the Amish farmsites, but were not sure where to go to look, but we had a great time. We stopped by a Amish store to do some browsing. We had to leave though, when Carl started to scream about a little wagon that he needed right then. Needless to say, his Dad is not as easy as his mom and (Aunties):) Oh Well it was fun anyway.

We drove to Blue Earth to have supper, Oh a little note about the kids behavior at the restaurant, I told Tom that I blame him for Sam's embarassing behavior, since he spends more time with him. Tom's reply was that Uncle Johnny should take the blame, since he thinks Sam actually spends more time with him lately:) And then we found the Fairgrounds in Blue Earth that had a spectacular Christmas light festival. They have the largest display in the state. It was worth the drive, and the kids really enjoyed seeing it too. They had a little train you could take a ride around the grounds in, but we decided it would be much warmer from the comforts of our car. The kids were disappointed about that, they thought it looked more fun to ride on the little train:)

When we got back to the RMH, we checked our messages and found out that Auntie Janet had stopped by for a visit:( We are sorry that we missed you Auntie:( But Thanks for thinking of us!!! We Love You:)

We hope you are all enjoying your weekend, and that you all find time to take in some of the Holiday Happenings!!! Spend time with your kids, these special times that we share with our kids will become the memories they will hold in thier hearts for a lifetime!!!

Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.

Proverbs 13:12

Blessings this Beautiful Season+

Love

Kelly





Friday, December 13, 2002 at 06:42 PM (CST)

Good Evening!!!

Happy Birthday to Grandma Phyllis!!! We Love You Very Much
we hope you had a very special day!!!!!

Carl is busy running around waiting for Dad & the kids to arrive!!! Carl's platelets were in need of transfusing today, so he had that done over at the PITC earlier today. He is feeling very good otherwise:)

While we were out to the Hospital, two little elves tried to visit us here. Pete and Theresa Peterson stopped by to see us and brought stockings for the kids, filled with lots of goodies!!! Thanks so much, we loved the card too, very much appreciated!! Sorry we missed you two, hopefully we will be here next time!!!

A very nice evening to all!!!

And he has said to me, "My grace is sufficient for you, for power is perfected in weakness.
2 Corinthians 12:9

Love

Kelly


Thursday, December 12, 2002 at 12:18 PM (CST)

Hello this Thursday noon!!!

Today Carl and I will just stay here at the "Dondald House" since we really don't have to be anywhere. It is so nice sometimes, to not have to go out. Unless of course you really want to. I asked Carl what he wanted to do today, his reply was "lets go and ride on something" He is refering to going to the mall, or Walmart and riding on the Firetruck (Thank's Auntie Jill for this one) and the horses or the tractor with Barney on it:) It is hard to get through the doors, or out of the doors without fishing for quarters to put this little "ride-a-haulic" on something:) Oh well, it is fun to see him so Happy.

We are excited for Dad and the kids to come tomorrow night!!! We thought of maybe taking a drive on Saturday to Harmony, it is an Amish community, they are supposed to have things there to look at. And Tom mentioned going out to check out some christmas lights at night. It will just be fun to spend some time together. Sam may spend next week with Carl & I here, I figure they need to have some play time to be with each other too!!!

Tonight they will be having a House Supper!!! They are serving roast beef and cheesy potatoes, doesn't that sound good!!!

Wishing everyone a very nice day!!!

Listen for God's voice in everything you do, everywhere you go; he's the one who will keep you on track.
Proverbs 3:6

Many are the plans in a man's heart, but it is the Lord's purpose that prevails.
Proverbs 19:21

Love

Kelly


Wednesday, December 11, 2002 at 05:09 PM (CST)

Hello this Wednesday evening!!!

New pictues added!!!!!

Carl is doing so well!!! Another pukeless day, and good results at the clinic!!!!! Carl's white count is starting to go up again, so we can discontinue the shots!!! Yea!!!
We saw Dr. Kahn today, she is so sweet, the residents were fighting over who got to see Carl, Amy won out, she is very sweet too!!! She has seen him the past 3 or 4 times. She always has these cool bubbles, you blow them and they keep thier shape, you can catch them on your fingers:)

Carl will go back on Friday again to do the same, check blood, and evaluate if a transfusion is needed. The Dr.s said that it is possible that Platelets will need to be transfused by Friday, but we will see. Dr. Kahn asked me if I had any questions, and I said yes just one, it is kind of hard to ask but we have been wondering about Carl. When Carl was first diagnosed, the chances he was given was 30 to 35%, I asked bluntly if that has gotten better at all, since everything seems to be working so well. She just shook her head and said that those are just numbers, and that what it means is that 35 out of 100 will survive this. She said that every situation is different,every child is different, But we will not be concerned with numbers, but to just keep hope, and pray for the the best. I asked her what is it that goes so wrong, is it that there is such a high chance of the cancer coming back, and she shook her head yes. I guess this just confirms for me the reality of the seriousness of this for Carl. Sometimes it is easy to forget, when things are going so well, and you see him so strong. I just needed to ask this, I needed to know.

When we got back from the clinc there was a load of surprises in our mailbox. A stocking with pencils, pens, paper, and treats for Carl. Two phone cards, a crossword book, a little brush (I had to chuckle, im sure its not intended for Carl) How very thoughtful of whom ever did that!!! We are so humbled by the generosity of people!!! To think of us here, like that, is so very much appreciated, I hope who ever filled the mailboxes here, knows how much it touched us!!!

Have a great evening!!!

Love to All

Kelly


Tuesday, December 10, 2002 at 07:48 PM (CST)

Hello this Tuesday Evening!!!

What a very beautiful day today:) It felt so good to be outside, it felt like a beautiful fall day!!! Our day was nice, Carl slept til about 9:30am, he woke up without vomiting for the first day in a long time!!! We went shopping a bit, then had lunch at Denny's. Carl even ate some of his grand slam breakfast meal!!!

I had some film developed at Ritz, and a floppy made so that I could add some new pictures!!! The pictures came out so cute, but the floppy will not be ready til tomorrow due to technical difficulites. So hopefully tomorrow we can get some new pictures out there. Santa was here on Thanksgiving, one of the pictues of Sam with Santa is just a hoot, the expression on his face is priceless:)

Tonight we will get started with Carl's meds, shot, and hooking him up. Then just settle in and watch some TV for awhile. Tomorrow we will go back to the Clinic for blood work in the morning, and back to see the Dr. in the afternoon. If it is as nice out as it was today, maybe we will vist the geese at Silver Lake Park:) Oh shoot I think Carl's bird cap boots are in Tom's car back home:( Oh well

We wanted to wish Matt Robinson a Very Happy Belated Birthday!!!!!
Matt's Birthday was on December 6th, Hope it was a special one Matt!!!!!

Wishing you all a nice evening!!!!!

Be strong and do not give up, for your work will be rewarded.

2 chronicles 15:7

Love

Kelly


Monday, December 09, 2002 at 05:42 PM (CST)

Hello this Monday Evening!!!

We hope your day was a nice one:) We went to the clinic for Carl's blood work, then back again this afternoon to see the Dr.s. Carl's counts are still dropping, but not yet bottomed out. I had thought that he would require a transfusion today, but his counts are not that low yet. So we go back for the same thing on Wednesday. His blood will be checked again to contemplate a transfusion.

His energy level is much lower today. In fact he slept from the time we got back from the clinic, til we had to get ready to head over there again for his 2:15 appt.
After our appt. we visited Linda Harmoning's sister Laurie Ourada, (forgive me if I spelled Laurie's name wrong) She is over at St Mary's Hospital on the 6th floor. It was very nice to meet Laurie, her husband and son. They are such kind people. Laurie's daycare had made a huge banner for Carl back about the time of Carl's second round of chemo. We had it hanging on the wall of the RMH for a long time. The kids put cute little notes of get well wishes, and Prayers for Carl's recovery!!! We pray for Laurie that she is well soon too!!!

I want to Thank Uncle Chuck, Auntie Jill, Nick & Kiri, and Auntie Jean, all that came to stay and help take care of Carl this weekend so that I could go home for a couple of days!!! They did a wonderful job with not too much spoiling, (ok just a little) but he loved thier company, and it sounds like everyone enjoyed thier time with Carl!!! I had a good time at home. We were able to get the Christmas tree put up, and some wrapping done too!!! We did some paper work, and much needed organizing. But it seems that when you get started on a project like that, you end up with a bigger mess than when you started:)


Hope you have a peaceful evening!!!

I have been found by those who did not seek me;
I have shown Myself to those who did not...ask for me.

Romans 10:20

Love

Kelly


Sunday, December 08, 2002 at 02:23 PM (CST)

Hello this Sunny Sunday afternoon!!!
Hope you are all enjoying your day. We slept in until about 8:30 this morning here. Carl said he wanted some eggs for breakfast, but when we went to the kitchen to make them his stomach thought otherwise!! Auntie Jill gave him some meds to help the nausea and then he did manage to get a few bites of toast down.
We went to Walmart and found some Christmas hankies for Carl to wear and on our way back stopped at Applebees for lunch.
It's soooo much fun to be here and to spend time with Carl. We have had lots of laughs and spoiling him as much as we can!!!! (sorry Tom) We are all going to be sad to leave.
Looking forward to seeing Kelly later this afternoon.
Jill, Nick and Kiri will be going back home tonight and Jean is staying until tomorrow morning.

Love,
Jill, Kiri, Nick, Jean and Carl


Saturday, December 07, 2002 at 08:06 PM (CST)

Good Evening!!!

We just got back from Target. We went out to eat at Pizza Hut/Taco Bell. Then went to Target. Carl was happy tonight and was being silly!!!!
Well this morning Carl woke up around 6:30 and was pukey till around 8:00 then we watched some of Shrek and went to the Mall. When we got back Auntie Jeannie was here!!!! We all kinda chilled after that and Carl took a nap. Carl isn't eating that well so we are pushing fluids.
Uncle Chuck left around 5:30. Auntie Jeannie is planning on staying here till Monday. Well I better go see what they are up to. Good Night!!!

God Bless,
Kiri


Friday, December 06, 2002 at 10:01 PM (CST)

Hello!!!

This is Carl's cousin Kiri. Kelly asked us if we would update the journal while we are here. We got down here around 5:30 and Uncle Chuck was here he came today so Kelly could go home and do some things around the house. I guess when she left Carl cried for about 10 minutes then he was better. Uncle Chuck went with to Carl's Dr's appointment and his white count is at 400 and dropping. So we are watching his temp.

Tonight Auntie Jill went and got Tacos!!!!!! Carl was hungry for Taco's so we had Taco's. Well tonight Uncle Chuck is staying with us and he'll leave tomorrow. Then around noon Auntie Jeanne is supposed to come. Carl is all hooked up for the night and cousin Nick is reading him a book. Carl seems to be having fun and we're all trying to keep him busy. We also are having fun. He's such a lil cutie!!!!!!!!!! Good Night.

God Bless,
Cousin Kiri


Thursday, December 05, 2002 at 09:21 PM (CST)

Hello this Thursday evening!!!

We have had a busy day today. I packed up alot of things that have collected the past few months, and will haul a load of it home with me tomorrow. It is amazing how much you can accumulate. But this has been our second home:) Carl has felt very good all day!! He got sick shortly after I started his tube feeding last night, so I shut it off for the night. He has not been sick since, or even gaggy. I have him hooked up now, so we will see how he does tonight. It should get better each day!!!

Tomorrow Uncle Chuck is coming for a visit, he may or may not bring Sam along. After Carl's Dr. appt. at the Clinic I will be leaving to head back home for the weekend. With Uncle Chuck here, I will be able to get on the road before dark. Auntie Jill will be coming after work with the kids, and Auntie Jean may drive up on Saturday and stay a day with the whole crew!!! Im sure they will all enjoy thier time here together with Carl!!! I talked to Sydney on the phone tonight, and she sounds like she is missing Mommy back home, so she is looking forward to her mom being back home for a couple of days too!!!

Wishing you all a very Happy Friday!!!

Love

Kelly


Wednesday, December 04, 2002 at 11:33 AM (CST)

Good Morning to all!!!

Carl and I are still at the Hosp. all packed up and waiting to see the Dr. so we can go back to the "Donald House" I heard that it has been all decorated up for the Holidays!!!
Carl is standing on the couch behind me, with his arms wraped around my neck, practically choking me:) He is very Happy today!!! We have had such a nice morning here together. He helped me pack up our clothes and belongings, he enjoyed shoving everything he picked up in a bag:) Then we returned some books, and movies we borrowed from the playroom. On the way to, and from, Carl blew all the Nurses kisses as he passed by them in the hall:) You should have heard the ooos, and ahhas. I think he has managed to capture each of their hearts in a big way:)

Each time we pack up and leave the Hospital, it is a small little celebration. Even though we know it will not be the last trip, it is a milestone towards the final time we will be able to pack up and walk out the door for the last time. I get a little choked up each time we go out of the doors here. Carl is such a strong little trooper!!! He just makes me beam with pride to look at him, and see how Happy he makes everyone else too!!! He is my little ray of sunshine:) We have so much to be Thankful for!!!!!


God Bless

Love

Kelly


Tuesday, December 03, 2002 at 02:41 PM (CST)

It is Tuesday afternoon!!!

Carl is napping, and I am able to update on a laptop in our room, that we got last night!!! It is so good to check in and read all of your uplifting, and encouraging notes, It helps more than ever to know that you all read our updates, and you share our highs and lows, and your Love & concern is very much felt:)

Today was better, Dr. Arnt explained the plan for Carl. She checked his protocol, and he will be having this surgery to remove the tumor around the 20th. First he will have a soft tissue scan to look closer at the mass, that is the first thing and will be somewhere about the 15th. After surgery, Carl can go home for Christmas for a couple of days, but will be having a 6th round of chemo, and need to be back right after Christmas. She stressed that they like to hit the chemo as close as possible right after the surgery. Then the stem cell transplant. No mention was made about any radiation. It was brought up several times before. That is not important right now, I am just glad to know for the next three weeks.

We were able to see Eric Fischer, & his Mom & Dad Tracy, and Fred thismorning for a little bit!!! Carl and Eric played in the playroom. They made playdough cutouts, and painted a couple of pictures. Carl managed to get paint all over his hands, on his face, and on the hat of his "Bob the builder guy slippers" he enjoyed his time with Eric. We are anxious to hear how Eric fared at the Clinic today with all his test results, and to find out about getting his port closed tomorrow!!! We are so excited for them!!!

Today has also brought some very sad news to our cancer families here. Amelia Mack lost her fight with leukemia thismorning. Angie, Amelia's mom is a good friend of Jody Poolman, Elijah's mom. They have been battling right along together with their bone marrow transplants for the past couple of months. They have been each others support, and have shared in each others joys, and loss. The Mack's have been living at the RMH too. I have talked to Angie a few times, but have never met Ameila. My heart aches for them in such a difficult time. Please keep thier family in your prayers.

The rest of the day Carl will be getting IV fluids to help flush his system out. He has been feeling pretty good, not too much getting sick, but that will probably get worse before it gets better. We will go back to the RMH tomorrow morning. Carl then will be seen back at the Clinic Friday to check his blood counts. Auntie Jill & Nick and Kiri will be coming Friday night to stay with Carl this weekend. I am going to get home for a couple of days to get some much needed things done around the house. I told Sam that maybe we could put up our Christmas Tree!!! He was very excited about that:)

Wishing you all a comfortable evening!!!

In you my soul takes refuge. I will take refuge in the shadow of your wings until the disaster has passed

Psalm 57:1

Love

Kelly


Monday, December 02, 2002 at 03:00 PM (CST)

Hello to everyone!!!

I am up in the library, as Carl is napping. I still have not got a laptop back, so I must take advantage of this quiet time to get away:) Hope you all had a wonderful Thanksgiving weekend!!! Our weekend was very nice, but it went by so very fast. We enjoyed our company yesterday, Uncle John & Auntie Sheila, Katherine & Sarah spent the afternoon with us. Then Loren & Gina Forcier, with thier little guy, Cameron came by to see us too!! It was fun for both Sam & Carl to have another friend to play with. I think Loren & Gina said they were heading back to Florida today. I thought of them this morning when I looked out our window, we had a little bit of snow for Cameron to see before going back home:)

This morning while I was doing Carl's site care, we had a very big surprise!!! Tracy Fischer came in to see us!!! Carl of course wanted to know where Eric Fischer was, and he was having an MRI done about then. He is back for some final testing, and to hopefully get his port taken out!!! They had more tests later today, and tomorrow morning too. It was fun to visit with Tracy. Eric did come by with his Dad, after his MRI, so Carl was very pleased to see him!!!

Dr. Arnt came in to see Carl, and said that we may want to keep him in the Hosp. til Wednesday just to keep his hydration going. She said that with this round of chemo drugs, they tend to get sick (pukey) more after they are done on the IV. Which is how it happened a couple of rounds ago when he was on this Cisplatin drug. That is when we started using the hankie for his getting sick. We have already been using one on him, he gets really gaggy with any thing that can trigger it. Today he is wearing a Green hankie, to break out a christmas color:)

Also after talking to Dr. Arnt, I am not certain what the plan will be for the next month. I asked her, in hopes to find out somewhat, how things would play out around Christmas. I was curious about this surgery to remove the tumor, when that would be etc. It seems as though Dr. Anderson, and herself are not on the same page? She talked about more rounds of chemo? Sometimes I could just bang my head against the wall. I guess I should learn not to ask too far in advance of what is going on. However, one would think that it should be ok to ask about a short term schedule, and expect the Dr.s to all be consitent? It does get frustrating at times.

I hope your all enjoying your day, It may be cold out, but it sure is a pretty sunny day looking out the window!!!

Love to All

Kelly


Saturday, November 30, 2002 at 08:37 PM (CST)

Hello this Saturday Evening!!!

We have had a very nice day here at the Hospital with Carl!!! Auntie Joy & Uncle Clair visited!!! Chris & Randy Johnson with thier daughter Jenna, and niece Felisha visited too!!! Carl was kept busy with lots of people and good conversation:) We also visited with Jim & Suzie Rima this evening!!! Jim is also at St. Mary's Hosp. he had surgery on his back yesterday. Jim will be able to go home already tomorrow!!! He looks really good for just having surgery!!!

We had a laptop earlier at the Hosp. but after I logged off once, and tried to get back on, it would not boot up again? So I returned it, and we will be back on the list to get another one as soon as one becomes available. So I am updating back at the RMH right now.

Carl has had a very good day!! Lots of energy, and seems to be feeling well!! Tomorrow We may have some more visitors Uncle Johnny & Auntie Sheila & the girls, and Gina and Loren & Cameron Forcier from Florida are here in Mn. and may stop by for a visit!!!

Enjoy your Evening & God Bless

Love

Kelly


Friday, November 29, 2002 at 08:31 PM (CST)

Good Evening to everyone!!!

Tom & Carl are settled in over at St. Marys for the night, Carl is getting ready to be "hooked up" with his tube feeding, and 5th round of chemo to start.

The room no. at St. Mary's Hosp. is 3-153
The Phone no. for Carl's room is 507-287-4432

We had a very nice Thanksgiving!!! The dinner was very good!! We all ate too much as expected:) We rested after our dinner, then went for a little drive. We didn't have any destination, we just went for a drive. We saw alot of beautiful country, and as we headed back were able to see quite a few homes with Christmas lights all aglow!!

Today Carl had his appt.s at the Clinic, Tom took him over for that. I took the other kids shopping, they did thier shopping for each other. It was pretty fun to see how excited they were to shop for each other, and be careful not to get caught:)

Sydney and Sam were just down playing bingo. They both came back with a prize!!!

Hope your evening is very nice!!!

Do not be anxious about anything, but in everything, by prayer and petition, with Thanksgiving, present your requests to God

Philippians 4:6

Love

Kelly




Wednesday, November 27, 2002 at 08:27 PM (CST)

Good Evening to All!!!

Finally the day we have all been waiting for, Thanksgiving Eve. We are all together, and can sleep in tomorrow morning!!! We are also looking forward to stuffing ourselves with Turkey:)

Happy 41st Birthday Auntie Holly, we wish you a very special day!!! Originally I had wanted to repeat the Birthday Greeting in the paper, I guess it is better I didn't though:)

Eric Fisher sent Carl the movie "Spirit" today!!! Thank You Eric, we are all going to go watch it tonight, the kids have been looking forward to that, and we all think that it is so perfect that it arrived today!!! Thanks so much!!!
Also for the Cards, and the adorable book:)

We want to Thank You all for your Thanksgiving Greetings that we have received!!! and we want to wish all of you a very special Happy Thanksgiving!!! We will miss being there with the family at Uncle John & Auntie Sheila's!!! Wishing everyone a very fun day!!! Eat lots of Turkey & stuffing, and be sure to get a nap in too!!!

I have been saving this special page in a book I have been using for reflections.

Thanksgiving

Even in times of trouble, we are to continually praise the Lord. He has done so much for me that I've got to tell others of his majesty. My joy will overflow to those around me. My praise will not be with empty words, but will reflect my Thanksgiving for all he has done for me. Lord, you are the giver of all life.
Emilie Barnes

O lord, I will praise you with all my heart, and tell everyone about the marvelous things you do. I will be glad, yes, filled with joy because of you. I will sing your praises...

Psalm 9:1-2

Happy Thanksgiving!!!

Love

Kelly


Tuesday, November 26, 2002 at 09:06 PM (CST)

Good Evening to everyone!!!

I just talked to Tom and he said I had better get updating, he said he will be out on the website in about 5 minutes and It better be updated;o) Can you believe it!!!

Any way I hope you all had a nice day!!! Not a whole lot going on here. We have just been enjoying Auntie Janets company!!! The boys are being themselves, fighting over toys, and beating on each other:) It is good to have them together, even though it involves a few squables now and again:) They are just normal brothers. When they get older, I wonder if Sam will let Carl hang around with him? Like Tom let Uncle John hang around with him:)

Tomorrow is the last day we need to go to the PITC for IV antibiotics for Carl. Yea!!! It isn't that bad, just hard having to take him out in the cold in the morning, and then again right before bedtime. He never complains though, he is such a good sport about everything:) His hearing test went very well, we will find out on Friday when we see the Dr.s, how it compares to the first test that was done. We don't think he has lost any hearing, he usually hears things first and asks "Whats that sound" & he is the first one to hear the Hellicopter whenever it is nearby in the air:)

It has been snowing out a little bit tonight, maybe in the morning it will have accumulated some. Everytime Carl sees any snow, he talks about throwing some at his brother. I guess I gave him that idea one morning when we went out and there was a couple inches on the ground:) We took a cab that morning down to the clinic for one of Carl's appts. The cab driver scooped up a handful of snow, and gave it to Carl to hold in the car. He was pretty excited about that snow ball. Later that day when we got back to the RMH, Carl looked around and said "Where is the snow at" That is where he had first seen it, and expected that it would still be there when he got back. So I had to explain the melting factor to him:)

Have a Great Night!!!

But make everyone rejoice who puts trust in you. Keep them shouting for joy because you are defending them. Fill all who love you with your happiness.

Psalm 5:11

Love

Kelly


Monday, November 25, 2002 at 02:14 PM (CST)

Hello this cold sunny monday!!!

We are enjoying the day here with Auntie Janet, Cousins Jody & Melissa. We had pizza for lunch, the boys are playing & the girls are catching up on thier soaps on TV:)

The clinic called and Carl will go over for his hearing test at 4:00pm. He is feeling good, and in a great mood, so he should be very cooperative today for a good test. A couple of times that the Dr.s wanted to get it done, it was when Carl was at the Hosp. not feeling good. So today will be a good day!!

We are getting excited for the Thanksgiving weekend. Tom and Sydney will be coming back on Wednesday after work, and school. We have signed up to have Thanksgiving dinner here at the RMH. They will be serving a traditional dinner at 1:00PM on Thursday!!!

We have alot to be Thankful for this year. We are thankful that we will all be together here with Carl!!! We are thankful that Carl is doing so well with his treatments, and we are nearing the end. We are thankful for all of our new friends that we have met during our journey with Carl's illness. We are especially thankful for all of our Family and Friends that have provided such a suport network helping us daily!!! We are mostly thankful for all of your continued Prayers, our ultimate source of energy!!!

Please keep Elijah Poolman in your prayers, he has been in the Hospital for a few days again. I pray that Eli & Jody are able to go home and be with thier family for Thanksgiving!!!!!

Have a nice day!!!

I will arise and defend
the oppressed, the poor, the needy.
I will rescue them as they have
longed for me to do.

Psalm 12:5

Love

Kelly


Sunday, November 24, 2002 at 05:25 PM (CST)

Hello to everyone!!!

Hope your weekend has been Great!!! Tom and Sydney headed back to Franklin a little while ago. Sam will be staying with Carl & I here in Rochester this week. Sydney was a little sad that she had to go back, and Sam didn't. There was a very fun Elf party here today for the kids. They made elf hats, took pictures, played bingo, and had treats!!! The gal that played the elf was great, she had the best outfit. She had lots of bells all over her, and lots of fun elf magical surprises for the kids, she really put alot into it, it was alot of fun!!!

I forgot to mention on Friday that Carl was a big winner at the Morton Steak supper. He won a beautiful bench made by Albert Panitzke. It is so nice!!! Matt Robinson called us at home after the drawing to tell us that Carl was a winner. Then Matt & Jim Nesburg brought the bench out to the farm, so we could see it before we left for Rochester!!!
That is pretty special that Carl won such a Great Bench!!!

We are waiting for Auntie Janet to come tonight!!! She has this week off from work, so she is coming to stay with us for a couple of days!!! That will be so helpful, since Carl is needing to go over to the PITC twice a day til Wednesday, for his IV antibiotics to be given. Also tomorrow Cousins, Jody & Melissa (Auntie Janets daughters) are coming for a visit!!! It is good that they are coming together, cause whenever one or the other visits, Carl asks where the other one is:)

Uncle Clair, we loved your note on the web page earlier:) Tom was telling me that last night when He & Sam & Carl were getting done at the Hospital from Carls IV meds treatment, they were squabling about going to McDonalds for a bite to eat. Sam was mad at Tom, and he told him "I wish Uncle Clair was my Dad" I just had to tell you that, I thought that was so funny.

Hope your evening is a nice one!!!

May the God of hope fill you with all joy
and peace as you trust in him, so that you may over-
flow with hope by the power of the Holy Spririt

Romans 15:13

Love

Kelly


Saturday, November 23, 2002 at 03:19 PM (CST)

Hello from the "Donald House"

Carl was discharged a couple of hours ago!!! He will need to go back to the PITC for IV antibiotics at 8:00pm tonight. He also will go back for this, twice a day, all of next week. He will have a hearing screening at the clinic sometime next week as well. Then Friday he will be seen for blood draws, then will be admitted again for chemo. Dr. Anderson spoke to us this morning, he thinks that this will be the last round of chemo. Since the scan looked so good, this would be the last round. Then Carl will have the tumor removed, possibly some radiation, and then the final High dose chemo followed by the "Stem Cell Transplant" this will probably bring us into January.

Right now, we are happy to be out of the Hospital. It has been a long 11 days. It is so good to see Carl running around again, riding his little bike. Tonight one of the families here are having a birthday party for thier little girl Alba. Tom & Syd went out shopping and found a cute bracelet making kit for her:)

Wishing you a wonderful day!!!

May he grant you your heart's desire
and fulfill all your plans. May there be shouts of joy
when he hears news of your victory, flags flying with praise to God for all that he has done for you.
May he answer all your prayers!

Psalm 20:4-5

Love

Kelly











Friday, November 22, 2002 at 07:34 PM (CST)

Hello this Friday evening!!!

I just finished talking to Tom, and have some very promising news!!! The scan today was very, very good. The results were very positive. Everything looks great. Dr. Anderson told Tom to tell me that the Dr.s are smiling:) He explained the bone marrow results. It shows a "rare finding" this means there are some cells, but not many. He thinks that the plan we have for two more rounds and the stem cell transplant will be very successful!! They also repeated the urine test, that shows the level of Neuroblastoma in his system. Normal is 12.5, Carl was at 12.9, Dr. Anderson said that once the tumor is removed, the level will be even lower. So Tom was very pleased with the report, as well as the Dr.s I am very releaved to hear this tonight, I have been worried about Carl all day.

Earlier Tom had called and said that Carl was having an allergic reaction to his antibiotic. He was being treated with benedryl. His cheeks were red and puffy, and his upper lip was swollen up pretty big. A little while later Tom phoned to tell me what had happened. He said that Carl had been given the wrong dose of Bincomycin. It turned out that it wasn't even his meds. It was someone elses medicine, and he wasn't even supposed to get anymore. He had been taking this for the past week, but never had a reaction to it. It turned out to be ok. He has recovered from the over dose, and it should not have harmed him. One of the Dr.s said that it could have caused kidney damage, but it wasn't enough to do that. So I have been feeling pretty rotten all day, being here, and not being there to love him up. Tom said he looked pretty bad for awhile.

I will be heading back to Rochester tomorrow. Tom will need to come back on Sunday, so I thought it would be better for the kids to not have to make both trips in one day. We have no word on when Carl will be discharged from the Hosp. But we do know that his next round of chemo will start on next Friday. We will probably stay in Rochester for Thanksgiving. Carl will be having some clinc appts. next week, including another hearing screening. They want to keep an eye on his hearing, since he will get the cisplatin again this next round. It can cause some hearing loss, and they like to monitor the hearing as they go.


Blessed is the one who trusts in the LORD, whose
confidence is in him. He will be like a tree planted by
the water that sends out its roots by the stream. It does
not fear when heat comes; its leaves are always green. It
has no worries in a year of drought and never fails to
bear fruit.
Jeremiah 17:7-8

Wishing you a very peaceful evening!!!

Love

Kelly


Friday, November 22, 2002 at 10:03 AM (CST)

Good Morning this Friday!!!

I have tried to reach Tom this morning, but they are out of the room. Carl must be having his body scan about now. I did however hear back from Tom last night about the results from the bone marrow test. Dr Anderson must have come in their room, right after I got done updating. The results are not what we were hoping for. And the Dr. also expressed, that this was not what he wanted. There are still cancer cells present in Carl's bone marrow. We of course, were wanting there to be none. Dr. Anderson said that this is not a set back, that things are not worse. Just that he had hoped it would be clear. I don't know what degree of involvement, in the beginning he had 90% of the bone marrow affected. I asked Tom to try to get a little more information today when he talks to the Dr.s again. The scan results should be available right away. So I don't really know what this means, if he will need more than the six rounds before the stem cell transplant? or if they will need to use stronger dose's of chemo drugs. I can't imagine that, because they are about as strong as they can possibly get already? We just have to keep our faith strong, and trust in God to help us through.

I will surely update later with any further results or info we hear from the Dr.s


Though the fig tree does not bud and there are no
grapes on the vines, though the olive crop fails and
the fields produce no food, though there are no
sheep in the pen and no cattle in the stalls, yet I will
rejoice in the LORD, I will be joyful in God my
Savior. The Sovereign LORD is my strength; he
makes my feet like the feet of a deer, he
enables me to go on the heights.
Habakkuk 3;17-18

Love

Kelly


Thursday, November 21, 2002 at 06:32 PM (CST)

Hello on this Thursday evening:)

I'm sorry to say that Tom got his lap top taken away:( I was so looking forward to his journaling. Oh well, maybe tomorrow he will get one back. Each day gets better for Carl. He has been keeping Dad busy. Tom said his foley should be removed tonight, as they will be done with the renal kidney testing. We still have got no word back on the bone marrow test from yesterday. But Dr. Anderson said that he will come by tonight yet and talk to Tom. Some nights though, he is still in the Hospital til 9:00pm, so we will just have to be patient I guess, but it is hard:(

Carl has not eaten anything since last Tuesday. Tom said that he tried to get him to eat some Ravioli hotdish, he took about three bites and threw up. He turns down food, because he is afraid it will make him puke. Whenever you offer him something, he says "isat gonna make my tummy hurt" or he says "isat gonna make me puke" the poor little guy. I am glad though, he has his G tube to rely on. This is the night that "Sammy the dog" comes to the Hospital for a visit. It has been along time since Carl has seen Sammy, so he has been looking forward to seeing him again.

It has been very nice being home. Sam and I went to Redwood to do some errands. We visited Uncle Chuck in the Hospital. He has been receiving antibiotics, for an infection in a toe. He thinks he may get out tomorrow. Please keep Uncle Chuck in your prayers for us, that this infection clears up and doesn't get worse. We went to visit Grandma & Grandpa Greer at Wood dale, they were out in the dining room getting ready to play Bingo. Carl should have been there, he loves to play at St. Marys. Also we ran into Grandma Phyllis at Walmart. She had been to the Dr. today. She has some swelling of her feet and ankles, and said that her heart had an irregular beat. She was picking up some medication that was perscribed. Also keep Grandma Phyllis in your prayers, she is a very precious Angel, and we are not done needing her.
Hope your evening is a special one!!!


Peace I leave with you; my peace I give you.
I do not give to you as the world gives.
Do not let your hearts be troubled
and do not be afraid
john 14:27

And we know that in all things God works for
the good of those who love him, who have been
called according to his purpose.
Romans 8:28

Love To All

Kelly


Wednesday, November 20, 2002 at 06:54 PM (CST)

Hello

I came down early today to trade places with Kelly so she could take grandpa back to Wood dale& have some time at home with Syd&Sam.When I got here the room was emty he was down at surgery.He had a bonemarrow aspiration,foley catheder put in for renal kidney function&cultures of his hicman site.We havn't got any reports on that but will know more tomarrow when the doc's make the rounds.There is also plans for more test on friday.Not sure what they will be but I think it is going to be a catscan of his whole body.That will tell us how the treatments are working. We are hoping & praying for good things from those reports . So until tomarrow
GOOD NIGHT

Tom



































































































































































Tuesday, November 19, 2002 at 11:29 AM (CST)

Hello on this beautiful day!!!

It looks so goergous out our window
here, the sun is shining and the sky looks blue, a few clouds but mostly blue!!! I dont know the temperature outside, it does look a little breezy judging by the Hospital flag waving.

A girl from Child life just came in our room to play with Carl. She brought in some little dolls to play Dr. with. He can make a face on it, and dress it with a little Hosp. gown of his choosing. They are so good here with the little children. Always coming up with activities to keep them happy. On Thursday, Sammy the dog will be back for a visit. It looks like we will still be here for Sammy.

Carl is better, but it looks like he will spend a few more days to continue to get antibiotics. His fever has been normal for 24 hours now!!! His infected sites just need to heal. The surgeon that placed both the Hicman, and G tube, Dr. Moir was by this morning to look at Carl. He agrees that they are pretty sore and infected. But he said that they will get better and heal.

In the next few days here, Dr. Anderson wants to make the best of this time. He wants Carl to re-do the Scans, and bone marrow, (staging) to look at the progress of everything. It is a blessing to be able to get this all done in the Hosp. as it would make for many very long stressful days at the clinic as the other alternative. He will also have a renal function repeated to check on his kidney function. The last time he had that done it was at the clinic. And he needed to be cathederized for the testing. So the foley will be placed while Carl is put out for one of these other tests. Also his G tube will get changed over to the "Mickey Button" So he will have a once over by the end of the week. We are not sure when we get to go back to the "Donald House"

Carl's next round of chemo was supposed to start on Monday, November 29th. Dr. Anderson said that the "staging" will give us an idea how everything looks. If all looks good, then we may wait til after Thanksgiving to start round 5.

Finally, Dad is able to be discharged Tomorrow. Tom will be coming down, and I will turn the charges over to him. I will get Dad back to Wood dale, and be home with Syd, and Sam for a couple of days. I will be chief, cook, bottle washer, hair doer, and bail thrower, in Tom's place. (shhhhh don't tell Syd, or Sam we want to try to surprise them;)
It will feel good to get back to the farm, even if only for a short while!!!

"I know the plans I have for you,"
declares the LORD, "plans to prosper you
and not to harm you, plans to give you
hope and a future" (Jeremiah 29:11).


Hope your day is sunny too!!!

Love and Prayers

Kelly


Monday, November 18, 2002 at 02:33 PM (CST)

Hello this monday Afternoon!!!

It is another day, and Carl is doing much better!!! His temp has been normal, his white count is up to 1200, and he wants to get up and play. The redness aroung his lines looks worse today, but the Dr said it would with the increase of white count. His body is working hard to fight off this infection. He just spent the last two hours down in the playroom!!! He has been vaccuming everything from his bed to the playroom floor!!! He is trying so hard to feel good. The pain in his tummy is still intense. It seems that most of it is coming from soreness of his G tube site that is infected. So picking him up, and moving him around is impossible without alot of "Owie, Owie, owie's",

The surgeon that placed his G tube will come by later to look at his site. It has been six weeks since it was put in, so he should be ready for the tube to come out and be replaced with a "Mickey Button" this is a little button that opens up to allow "Hooking up" for his feeding. It will be wonderful to change over to this, from the long tube that has been rolled up under his shirt. Also, the surgeon will look at the irritation around the tube. He said that part of it, could be due to the latex ruber of the tube causing some of this. He may have the "Mickey Button" installed either Wednesday, or Friday. I suppose depending on the condition of his site.

My Dad seems to be doing very well, he is not sure when he will be discharged. He said probably not before Wednesday. They have had him up walking, several times a day, he said that is going pretty well. His blood had been down some, so he was given several transfusions too. The Dr. told him that, this is very common with surgery. It sounds like Mom & Dad will be sharing a room over at Wood dale. Mom said that the staff are making arrangements for that. I am sure Dad will need to stay there for a few months, so it will be good that they can be together, especially through the Holidays!! Holly and I can decorate thier room really cute for them:)

Have a Great day!!!

Love

Kelly


Sunday, November 17, 2002 at 07:04 PM (CST)

Good Evening everyone!!!

Tom and Sydney are on thier way back home. Bryan left awhile ago. It is always so hard to say goodbye:( We had a talk with Carl's Dr. today about Sam, and he being sent home because he was exposed to chicken pox. He said that Sam did not have to leave, and that if he has an immunity to the virus, (he was immunized against) than he cannot transmit the virus. Only a child broke out can transmit it. I asked the Dr. several times, to get this clear. And he said that Sam would not be a carrier. So Sam did not have to go home. Tom said "Im not gonna tell Sam that" Sometimes we learn the hard way. So I do not have to keep Sam away from Carl, or out of the Hosp. or RMH if he is exposed to chicken pox, because he neither has it, or is carring it.

Carl's temp has been bouncing around again today. This morning he was happy, and very playful. As the day went on, he was back to feeling pretty lousy. The Dr.s think Carl has an infection in both his Hicman line, and in his G tube line. They are both very red and inflamed around the lines, going into his body. They believe his fever is due to this infection. His white count has crept up to 300 today. But should normally be recovering quicker. The Dr said his white cells are probably being used to fight off the infection of his lines. Carl continues to get morpine for pain, but not as frequent. He is so achey, and very weak. When we stood him up to get him in the tub, his little legs were so shakey. It just breaks your heart to see him so weak, and frail.

Carl has been asking for me to lay down with him, so I think I am going to get something comfortable on, and hop in bed with him and snuggle him up a bit. He still has his marshmallow cheeks, and are perfect for mooching up:)

Hope your evening is cozy too!!!

Love

Kelly


Sunday, November 17, 2002 at 07:48 AM (CST)

Good Morning to all!!!

I just got off the phone with Tom, he said that Carl's fever is gone!!!!! Halieluiah!!! (did I spell that right):)
Bryan, Syd & I are getting ready here, (RMH) to head over to see the little dolly. Bryan has a bunch of homework to do, so he will spend the day working on that. There is a nice little desk area in Carl's room, with a overhead light. He worked there most of yesterday too, he is trying hard to get it all done. So I will go alone over to watch the game with Dad. Tom doesn't like to watch these two teams play together, around Dad. He says the Vikes get bashed too much. I just think it's funny:) and if that makes Dad happy, more power to him:)

Thanks to everyone for all of your continued Prayers, When people ask, "How do you handle this?" my answer every time is "We have alot of support, and Prayers from everywhere" And I believe that is the only answer!!!

Please keep Uncle Rick, Auntie Jill, Kiri, and Nick in your thoughts and Prayers too. They were faced with a very very hard task yesterday. Butterscotch was put to sleep. What is so hard, is that Butter has been with them since Kiri was a little gal. I think in fact, Butter was a gift to her for mastering the art of potty training!!! Kiri is 15. How do you say goodbye to a special member of your family that you have known and Loved for so long. Losing a pet is one of the first very painful experiences, a child will know. Butter was a wonderful Dog, we Loved her too, and will miss her very much. May your memories of Butter keep you smiling, and make it a little easier every day!!

Hoping your Sunday is filled with many warm Blessings!!!

Love

Kelly


Saturday, November 16, 2002 at 01:41 PM (CST)

Carl's Room no. 3-144
Carl's phone no 507-287-4411



Good afternoon to everyone!!! Bryan, Sydney, & I visited with Dad thismorning. We brought him some rolls from Daube's bakery. He should enjoy them, he is finally able to eat regular food!!! He is feeling pretty good!!! Tomorrow the Vikes play the Packers, Bryan and I thought we would watch the game with Dad:)

Carl has had his eye on a little dirt devil vaccume cleaner, (ok Jill your probably laughing about now) so anyway we thought we would surprise him with one. He was happy to get it, Im sure when he gets back to the RMH he will be buzzing around the halls with it. He still has not got out of bed. I am going to hold him in a little while, so the nurse can change his bed. We thought it would be best to waite a day or so to take him out of his room, since his white count is still so low.

Eric will be able to leave the Hospital today!!! Fred his Dad, brought over some "Sparkling Red Grape Juice" so that we can share in thier celebration!!! What a huge milestone to be all done with chemo, this is the day that every cancer patient dreams of!!! We are so Happy for Eric & his family.

Love To All

Kelly


Friday, November 15, 2002 at 05:11 PM (CST)

Carl's room no is 3-144 phone no at St. Marys 507-287-4411


Good evening everyone!!!

Carl is sweetly sleeping. Tom just took his temp. it is at 100.4 it is still up and down, but not as high as last night. He has been getting Tylenol to help with the fever, and Morphine every two hours to ease the tummy pain. We think he has developed some mouth sores, the last time he was awake, he told me his mouth hurt. The tube feedings will be on hold for a day or so. He will be given another type of fluid in his IV, that contains vitamins, and electrolytes since he wont be getting the pedia sure via his G tube.

Holly and I went over to Methodist this morning to visit Dad. He is looking so good!!! I think he is so glad to be through the surgery, he was really worried about not coming out of it. I told him yesterday that he has alot of Prayers coming his way too, I told him that he is stronger than he thinks he is, and we know he would get through fine. Tom was over to see Dad a little while ago, and the nurses already have him sitting up in his chair, so they plan on moving right along with his rehab.

We had a visitor a few minutes ago, Zane & his mom Cheryl. They are our new friends we met at the RMH. They have three boys, and the youngest is Jayden, the little guy that Carl likes to play with. They are such nice people, we are so glad we got to meet them. Zane will be having a Stem Cell Transplant around the beginning of January, the same time that Carl will be having his. It will be good to have some company going through that. Carl played a little bit with a junior slinky that they brought for him!!!!!

Tom just got off the phone with Grandma Phyllis, she said that Sam was busy playing in the livingroom at the time, he was making a tent and enjoying himself. These boys have been into making tents lately. They like to take blankets and drape them over tables and chairs or whatever works and crawl under. They pretend they are in a fort:) They were doing that at the "Donald House" last weekend with Auntie Jill.

Auntie Holly headed back home earlier. We are now waiting for Bryan, and Sydney with Jenny Bloedow to get here. We are counting on Syd to help Jenny with directions and show her how to get here. Im sure Syd has enjoyed her time with the Bloedow's. In an email a couple of days ago, Syd said that it was a girls night out, they went to the movie "The Santa Clause Two" that is a Great Movie!!!

Tom & I were just brought in supper trays. Carl's since he is not eating, and Eric sent his over here too, he went out for supper tonight. I got first pick. Eric's looked better so I got his fish and boiled potatoes Tom got a cheeseburger & 4 tator tots:) Tom was on the phone at the time, so he missed out on first choice!!! Thanks Eric for sending your tray this way!!!

I wish you all a Great evening, spend time with your loved ones, go & hug your kids!!!!! Tell them how much you Love them!!! I told Carl earlier "I Love You" he didn't say it, but managed to form the words with his little mouth "I Love you too"

Love

Kelly





Friday, November 15, 2002 at 06:17 AM (CST)

Good Morning & Happy Friday
Our Hospital room number at St. Mary's is 3-144, Carl's phone number is 507-287-4411

We have added two links to the bottom of Carl's web page To visit Eric Fischer's or Elijah Poolman's webpage just click on the links:) It will take you right into their pages!!!!


First of all, Thank You so much Sheila for all of your help yesterday with Carl, doing Tom's update:) and for bringing Sam back home after the chicken pox ordeal.

Dad's surgery was very successful!!! we didn't get to see him til about 8:30pm. He went into recovery in quite a bit of pain, and I think that took awhile to get everything under control. We didn't stay very long, we wanted to get back to Carl and check on him before it got too late.

Carl is about the same, I just talked to Tom, his fever is hanging around 102. He was given some platelets last night, and is currently getting some red cells. They tried to keep up his tube feedings through the night, but he just kept getting sick. Tom said they are holding off on that for awhile. It is so hard to see him so down. You know he is sick when you cant get a word out of him. Last night Tracy Fischer was over in his room, and said "You know he is sick when he doesn't even mind you talking during Shrek" we had Shrek playing for him, thinking that would cheer him up. So today will be another day, each day should get better for Carl. The transfusions, fluids & rest will help.

As for Sam, it is kind of a long story, we got notice that he had been exposed to chicken pox at Head Start. It was advised that he not be here by the Drs. We are not exactly sure the whole situation, since it is a requirement for children to be vaccinated, and rare to see any outbreak, but since he and Carl have been vaccinated for this, they should be ok. However Sam could still be carring the virus, from this kid that broke out at school, and he potentially could transmit it to someone else. So poor Sam had to leave yesterday with Auntie Sheila. It was hard to see him go, it just breaks my heart. I thought he would be able to spend a few days with Mom, since he should have been able to be here for the weekend. So his visit was cut short, and it isn't even his fault, and he doesn't even understand why. I hope he gets lots of extra huggs back home, I'm sure he will:)

Sydney will be coming later tonight with Jenny Bloedow, Carl will be glad to see her here. He cried when Tom and the kids left to go back home last Sunday, and kept saying "sissy" so I'm sure she will help brighten his day!!

I will update more later, hope your day is filled with many Blessings!!! Your Prayers keep us going!!!!!

P.S. Chuck, Thanks for cleaning all the pumpkin seeds, Sarah and Katherine, Thanks for roasting them!!!! They are Great!!!! What a surprise!!!!!

P.S.S Jill I found two Biolage cream rinse's here, so I do have yours too:)

Love

Kelly


Thursday, November 14, 2002 at 04:32 PM (CST)

Greetings from Rochester. This is Auntie Sheila with today's update. Carl was a little pukey when I first got here this morning. They have been trying to get his fever down today from a high of 104. It is at 100 now. His breathing was a little rapid earlier so they did a chest xray and it came back clear.

Kelly and Holly are at Methodist waiting for Bill to get out of surgery. I had a chance to meet Tracy Fischer today. She is as much a peach as I thought she would be.

Tom thinks this counts as his turn for updating. Guess that puts me right up there on the favorite sister-in-law list.

Love from Rochester, Auntie Sheila


Thursday, November 14, 2002 at 04:17 PM (CST)

Greetings from Rochester. This is Auntie Sheila with an update for everyone. The nurse is here now. They have been working all day trying to get Carl's fever down. It is at 100 now, down from a high of 104. At the time I didn't know it was that high, since they take it in Celcius, not Farenheit. Carl hasn't eaten anything today except the end of a popsicle and a few sips of water. He was a little pukey when I first got here this morning, but that settled down once they unhooked the feeding tube and gave him some anti-nausea meds.

Kelly and Holly are at Methodist with Bill, waiting for him to get out of surgery. Tom and Sam just left to get a pop. I was able to meet Tracy Fischer. She is certainly the peach I expected her to be! The doctors have been in and out several times. They took a chest xray since his breathing was a little rapid, but it came back clear. They tried another antibiotic this afternoon and did a couple blood cultures, but won't know the results for a while.

Will close for now, Tom thinks this counts as his turn for an update. I guess it puts me up further on his favorite sister-in-law list. Wish there was more I could do to make things better. It breaks your heart to see the little guy laying in bed with a washcloth on his head, trying to get the fever down.

Love and prayers from Rochester, Auntie Sheila


Wednesday, November 13, 2002 at 10:27 PM (CST)

Hello a bit late tonight

Dad is here at the RMH with Sam & I, Tom is at the Hosp. with Carl. He was admitted this evening with a fever. He woke up feeling pretty lousy, and went down hill from there. But we expected this to happen, as it did the other two times he was given this type of chemo. The good thing is, is that Eric Fischer is just a couple of rooms down from Carl, having his very last round of chemo forever!!! Good Luck Eric and Congratulations on your last round!!!!
Last night Tracy & Eric stopped by here (RMH) and took Carl and I out for supper. We went to Victorias, they serve Italian food, Very Good!!! We had a Great Time. It is hard to believe that Carl felt so good last night, then today just the opposite. But that is how this stuff works.

Tomorrow Dad needs to be at admissions by 9:15am, we will head over to Methodist and Tom will join us there. Auntie Sheila is coming down to stay with Carl, so that both Tom and I can be with Dad for his surgery!!!

I will update more tomorrow, and add the Hosp. room number and phone number for Carl.

God Bless

Love

Kelly






Tuesday, November 12, 2002 at 04:28 PM (CST)

Hello to all

Hope your having a great day!!! We just got back from the PITC. Carl had his red cell transfusion today. As we were sitting in the room waiting for the blood to arrive, I was looking out the window. I couldn't believe my eyes, a Huge white feather came floating up into the sky and passed right in front of our window. I have heard that seeing or finding a feather, is a sign of the presence of a Guardian Angel:) I dont know much about this, but I do know that it has happened enough to make me really take notice of it. This of course probably would not hold true if one works in a turkey barn. Or in Arkansas (A turkey house)

Speaking of Arkansas it was about this time a year ago when Grandma Phyllis, Auntie Judy, Auntie Joy, Auntie Janet, Auntie Jean, Auntie Jill,(did I get them in the right order)
Auntie Sheila and I visited our Niece Nancy, her Husband Billy and thier son Ricky Garette, (Uncle Kens daughter, & family)!!! That was such a memorable trip for all of us. Nancy is the oldest Grandchild of the Robinson family and Carl is the youngest:) We spent a few days visiting, looking at pictures, and touring several parts of Arkansas where Nancy grew up, and the Ozark area where they live now!!! We also enjoyed a trip to a winery, but the most precious of all time, was the chance to just visit and get to know Nancy and her family better. We left there thinking, that they must have thought, we were a bunch of nuts. Speaking of nuts, we brought back a ton of Pecans:) How fun, that trip is one I will forever cherish, and never forget. Nancy, Billy & Ricky, we all think of you often, we Love & miss you very Much!!!

Tonight they are having a House Supper again!!! It is so wonderful not to have to cook. Tomorrow Tom will be bringing Dad to Rochester for his Clinic appt. at 10:00
Carl and I will meet them over there. His Surgery will be on Thursday, Please keep Dad in your prayers.

Have a nice evening!!!

Love

Kelly


Monday, November 11, 2002 at 05:56 PM (CST)

Hello on a Monday evening

We had a busy day at the Clinic today. Carl's counts are going down as expected. He will be having a red cell transfusion tomorrow. We were surprised to see Eric Fischer up on 12E today:):):) and the whole family was with too!!! Those boys of thiers are so cute. They have all shaved thier heads again:):):) It makes me want to go after Sam with my clippers, he always looks so cute with a Buzz.

Both Carl and I are tired from our busy day. I think I will get him in the tub for his bath soon, and we will get to bed early tonight. We dont have to be to the PICU for the transfusion til 11:00, so we won't have to rush as much as we did this morning. We also saw Elijah Poolman at the Clinic today!!! He looks so good!!! Jody said they may be able to go home now, and just come back once a week for a check. That will be so nice for them!!! Also this week is Eric Fischer's last round of chemo!!! I continue to pray for the both of them, and wish both of thier families the very best of everything!!!!!

Have a nice evening!!!

Love

Kelly


Sunday, November 10, 2002 at 12:05 PM (CST)

Hello this Sunday Noon

We just got back from our overnight getaway. We had such a nice time!!! Yesterday started with Bryan's Soccor Tournament. They won the State (Adapted Soccer) Tournament!! How priceless to see Bryan in such Glory!!! It was So Great were had the chance to go and be there!!!!!

We met some friends for supper, Bob & Karrie Bauer, Randy & Chris Johnson, and John & Karen Jeffers. We then went to a place called "Starks" we used to go there once in a while when I lived in Inver Grove Heights. The band playing was "The Dweebs" they are kind of a variety band. Lots of Fun!!! It felt good to get out, it has been a long time!!

Auntie Jill& Kiri had a wonderful time here with Carl, Sydney and Sam. They were able to go to the "Shrine Circus" with about 15 other people from the RMH. They took a cab down town, with the group, and got seats in the second and third row!!!! They really enjoyed the show!!!! When they returned to the RMH, they were treated to a House Supper, so they didn't even have to cook last night:)

This morning Tom and I stopped by to see Uncle Clair, he had made some copies of Carl's Halloween pictures for us!! Now we will have extra to give out!!! We also got to see Auntie Judy, and Uncle Tom, they stopped by as we were leaving. Uncle Tom & Uncle Clair were getting ready to go to the Vikings game. Auntie Judy was going to stay and waite for Auntie Joy & Danny to return from Morton. They went there to help Grandma Phyllis with her Senior Citizens fund raiser.

Carl seems to be feeling very well still, he has been running around with Sam ever since we got back here. We will go back to the Clinic tomorrow morning to have blood drawn, then see the Dr.s in the afternoon for results. Tomorrow he also will get the final dose of chemo. for this round, in his Hicman. It is just a push of a drug called Vincristine. It is a small amount, but is responsible for dragging him down to the bottom, after his regular round of chemo is done. This is when he tipically can run a fever, and could end up back in the Hospital on antibiotics. I pray that he maintains his strength and energy, and gets through this next week ok.

Tom will be back on Wednesday with my Dad. He has his pre-op on Wednesday, then his Hip replacement on Thursday. We will both need to be here for a couple of days, in case Carl should get sick. This will be a busy week for us here.

Wishing you all a Relaxing day!!!

Love to all

Kelly


Friday, November 08, 2002 at 10:40 AM (CST)

Good Morning and Happy Friday!!!

We were just getting ready to leave the Hospital, and they brought in a laptop. Go Figure:(

Thanks to the help of our Technical Specialist, Carl's Uncle Clair Murphy, We have Carl's "Heart On Hand" print on the webpage. Clair scanned it, improved the text, and added color to the little heart on Carl's hand!!! If you are able to print, you should be able to print it out. Clair put printing instructions on the bottom. We can send you a copy in the mail if needed. If you are like us, something is usually screwed up on our computer at any given time. And right now, our ink needs replacing:( but we have extra copies on hand. ( no pun intended)


Thanks for your Help Uncle Clair!!!!!



So as we were leaving the Hospital, Dr. Kahn said, before you go, we should get a urine sample. (to do that one test)
I told her that Carl is pretty good at going in a cup, and we would try that. Other wise they put cotton balls in thier diaper and waite for them to go, and use them. Which would be more sitting around. So any way I took Carl back into the bathroom, and told him he needed to pee in this little cup, (it was a little plastic cup with a screw on lid) I told him we could leave and go back to the "Donald House" as soon as he was done. Carl went like a pro, then insisted on carrying it out to the nurse. Well Dr. Kahn was sitting on a bench out in the hall, doing some charting. So Carl heads out the door with his little bottle. He walks over to the Dr. as proud as can be and hands her his little bottle. She laughed and laughed, she said "That is just too cute" It really was funny, everyone in the hall got a charge out of it!!! The Dr. said she would have something to talk about all day long. I told her, It would give me something to write about:):):):):)

When we got back to the "Donald House" Carl had a big stuffed "ty" beannie Turkey in his mail box!!! He was pretty excited to find that. The RMH is wonderful about keeping the children here well stocked with cuddly friends. And Carl is building quite a collection of them!!!

We are so excited to see Tom, Syd, and Sam tonight!!! Tom said that Sam cried for a half hour on the way home Monday night when they left Rochester. That just breaks my heart. He is so fun to talk to on the phone, he always says "Hii Maamma" Sydney is such a doll on the phone too, she always says how much she misses me, I hope she is getting lots of Huggs back home!!!

Wishing a Warm Beautiful Friday to all!!!

Love

Kelly


Thursday, November 07, 2002 at 01:25 PM (CST)

Hello this Thursday Afternoon!!

Hope you are all enjoying this Beautiful day!!! I am so looking forward to being back at the RMH on Friday!!! I am so anxious to get oustide, it looks so nice out!!!!! I wish that we had a stroller over here, we would walk back, but we also have a couple of bags to haul along, so we will probably just get a cab back. Looks like we will be out in the morning!!! This has been a long week here at St. Marys, maybe because we still have not got a laptop to use:(

Carl is having a very good day!! (no decadron) I think it reallly makes a difference for him. He played most of the morning in the playroom, we made cookies, and pizza's with playdough!!! It is kind of fun being allowed to just sit and play, that you have nothing else that has to get done, or nowhere that you have to be, but to just have that freedom to play. It feels pretty good!!!

Friday and Saturday Bryan is playing in his State Soccer Tournament. I have never seen him play but am very excited to be able to go see him. It is a wheelchair team from his school, and they are playing at the Stillwater High School. Auntie Jill and Kiri will be Staying with Carl & I think Sam & Syd too. We are going to try to hook up with some friends of ours Bob & Karrie Bauer after for maybe supper and a cocktail or two:) Hey Chris and Randy, we will get ahold of you guys & see if you want to join us too!!!

I suppose I had better get back to Carl, he fell asleep watching Shrek. He has been napping for a couple of hours each afternoon, so that gives me a chance to sneek out and update here in the Library:)

Tom has been emailing Carls- Heart on Hand Print to some of you who have requested it, hopefully those get through, if anyone didn't get one and wants one, just let us know, leave your email address so we can get it to you:)

Have a fun day!!!

Love

Kelly




Wednesday, November 06, 2002 at 12:57 PM (CST)

Hello this Wednesday afternoon!!!

Carl is napping after another episode of "Decadron Mania" we were out for a walk around the Hosp. to occupy a little time. We walked by the cafeteria, and Carl thought he wanted a sandwich. Well he cannot go in there with his chemo IV pole, so I told him we would go back upstairs and I would come back down and get him one. Well you can only Imagine how that Flew:( So Carl pitched a fit all the way back up the elevator, and down the hall. One of the nurses said that she would come back down with us, that Carl could go in the Cafeteria with a nurse along. So we did that, but now he wanted to be carried, he didn't want his red car along. Then the nurse had to make his sandwich, because he wouldn't let me put him down. Well we got the sandwich and got back upstairs and Carl had lunch. By the way he is starting to not want to eat any of his Hospital food that he gets on his tray:( I guess I can't blame him.

The Dr. said we could stop the Decadron, since he is not getting sick anyway. So I talked to the Nurse about skipping any further doses. Hopefully he will return to his normal little (most of the time) sweet self. It really can try ones patience. The rest of the day should be better, we will be visited by a really nice Dalmation dog named Newton tonight, so Carl is looking forward to that. The last time Newton visited, Carl had just got out of surgery that day, from having his G tube placed. And he was not up to the visit from this loveable guy. He is really so gentle and affectionate. His owner says that after they are done visiting the children at the Hosp. they go to McDonalds, and Newton gets a Hamburger!!! Isn't that adorable. You'll have to forgive me, I think I'm just missing the animals at home:)

Hope you have a Great day, it looks so nice out, the sun is shining here, I heard it is going to get up in the 50's by the weekend!!!! That sounds so nice!!!!!

Dena, we have lost a Ritz film cd, would you look in the computers over there and see if it is in the tray? It has the Halloween pics on it. I thought I sent it home with Tom, and when he got there, he didn't have it? Thanks!!!


Take Care!!!

Love

Kelly


Tuesday, November 05, 2002 at 02:37 PM (CST)

Hello to Everyone

Still don't have a laptop in Carl's room. I tried update in the Library earlier, but Carl hopped out of his little Red Car and took off with his IV pole cruising around the Library. And not being very quiet as you can just imagine:) So we left the scene. I am back now, as Carl finally settled down for a little nap.

He has a terrible side effect to one of the anti-nausea drugs called Decadron. It turns him into a little monster. He gets very aggitated, and gets set off easily. I just talked to our Nurse about it, she said that is quite common. He gets it every 6 hours. His next dose is at 3:00, I can hardly waite:-0 Actually it does'nt effect him immediately, it takes a little while to kick in.

Other wise Carl is doing fantastic!!! He slept through the night last night. He has had no vommiting, and is eating pretty good. He also is continuing his tube feeding the same as at the RMH "hooking him up at night" I think Carl is handling this like a champ, considering all!!! It is alot for a little guy to have to put up with. The Nurses are so delighted to see, and get him as thier patient. He has gotten very social, and quite a big helper:) He has gotten used to checking vitals, and usually is ready for what comes next. He is also learning to use big words:)

Hopefully we will get a laptop in our room soon, and be able to update more often!!! Wishing you a Great Day!!! And relaxing evening!!!

Love

Kelly


Monday, November 04, 2002 at 10:55 PM (CST)


Hello everybody
Kelly&Carl are back in for round 4.His counts got right today and was admited around 5:00.So Sam,Sydney&myself got them settled in and headed for home about6:30.Just got off the phone with Kelly and she said Carl got started about 10:00 so he will be at St.Mary's at least until Thursday around 10:00 p.m. His new room #3-146& phone is 507-287-4413. Kelly has her name in for a lap top so she will be back doing the updates tomorrow.



Good Night

Tom


Monday, November 04, 2002 at 09:28 AM (CST)

Good Morning to all our Dear Family & Friends:)

We had such a nice weekend here together!!! Sam & Syd are already starting to grumble about going back home, Thank you so much Auntie Janet, Auntie Jill, and Auntie Joy, for sharing our fun weekend!!!. Tom is over at the clinic right now having Carl's blood drawn. We will go back to see the Dr. at 2:00 to find out the plan.

We will pick up the Halloween pictures we took here at the RMH later, when we go back out, so you will have to check back again to see the little Fireman:):):)

I wanted to Thank everyone for your continued Prayers for Carl, it is such a comfort to know that he is lifted up by so many people, in so many places. Your support is the key, it gives us the strength we find within. Some of you have requested Carl's "Heart on Hand" Prayer page that we have started for him. We are having it scanned, so that we can pass it along on email. If you would like to have a copy, let us know, and leave us your email address, so we can forward that on to you. Also feel free to make as many copies as you like. And share it with others that you know are, or would like to Pray for Carl's healing.

Have a wonderful Day!! Will check back later:)

Many Blessings!!!

Love

Kelly


Sunday, November 03, 2002 at 07:57 AM (CST)

Good Morning!!!

Hope you are all keeping warm!!! It was sure nice to have the sun shining here for a couple of days, but it looks like it will be a cloudy one today:( Carl is such a trooper, we couldn't tell his counts are down by the way he goes and goes!!! I pray the counts recover for tomorrow when we go back and get checked. We want his schedule to stay on track as much as the Dr.s do. each day of treatment we get behind us, is one step closer to the end result, "Carl being cancer free"

Auntie Jill and Auntie Joy have been here with us!!! The kids are enjoying their company very much!!! And so are we!!! Auntie Jill is learning how to do carls routine, such as "Hook him up" to his feeding at night, and she gave him his gmcsf shot yesterday!!! That is pretty good for an auntie to do this, and be the mean guy for a turn:( We may possibly go to Bryan's State Soccer Tournament next weekend, and Jill may stay with Carl while we go. If it all happens to work out with Carl not being sick etc.

Today we all are planning to go catch the new movie "The Santa Clause two" That should be a fun one for all of us!!
I took our kids to the first one when it was out in the Theatre, years ago, and we really enjoyed it!!! It is so good to escape at the Movies once in a while:)

Sydney does not have school tomorrow, and we pulled Sam from Head Start for the day so that Tom and the Kids could stay here with us for one more day. They will head back to Franklin after Carl's clinic appt. tomorrow.

Hope you all have a wonderful Sunday, do something special!!

Love

Kelly


Friday, November 01, 2002 at 04:33 PM (CST)

Good Evening to all

We just got back from the clinic. Carl's neutrophils are still too low to start chemo. They were 250 on Monday, today they are at 260:( So the plan is to give him the gmcsf shots for three more days, and re-evaluate on Monday. Hopefully the counts will recover enough to go ahead with chemo. They want to keep him as close to schedule as possible.

Auntie Jill, Auntie Janet and Sam are here so far. Bryan is on his way. Tom and Sydney may go to the Redwood football game tonight, and come tomorrow morning. Auntie Joy is planning on visiting tomorrow too!!! It Should be a nice weekend, Carl will enjoy himself more than being in the Hospital.

Have a very nice evening!!!

Love

Kelly


Friday, November 01, 2002 at 08:55 AM (CST)

Good Morning to everyone!!!

Hope you had a fun Halloween!!! Our was very nice, the children here at the RMH went by cab over to a senior housing place. They took a picture with a Halloween Queen, were given a bag of candy & an apple. The residents of the Charter House must have really enjoyed watching all of the little Goblins all dressed up. They all looked so cute. When we got back to the RMH, the staff had the community room all fixed up for Halloween!!! They served Pizza to all the children and families, it was very nice:)

We are waiting for Auntie Janet and Sam to arrive!!! They should be here about noon. Carl and I will head over to the clinic in a little bit to have his labs drawn. Then he will need to go back to see the Dr. about 2:00. He will be admitted some time this evening for his fourth round of chemo. Tom & Syd, and Bryan will be coming later too. And Auntie Jill will be coming as well!!!

I talked to Auntie Joy last night for a little while. She told me about her brother in law, Tom Murphy, who is Uncle Clair's brother. He has been fighting Cancer along with Carl. He has had some struggles with treatment, and recently received news of more difficulites. Shortly after Carl was diagnosed with Cancer, Tom had sent Carl a note on our web page. He told Carl that alot of people were praying for him. And that he was going to ask God, if his Prayers could be sent to Carl as well. I rember that day I read Tom's note. It ment so much to me, It brought tears to my eyes. After I read it, I went back in our room at the RMH, Auntie Janet was here at that time and said "Kelly what is wrong" I told her about Tom's note, and told her to go out and read it too. She also came back in the room crying. Tom is a very special person, his Love for others shines through!!!!!

As he has asked God to share his Prayers with Carl, I will do the same for Tom. Please Pray for Tom as well, Pray for his Strength and Healing. May God Bless you Tom.

Have a beautiful day!!!

Love to you all

Kelly


Thursday, October 31, 2002 at 11:24 AM (CST)

Hello this Scarry Halloween;-)

Carl is having a happy day so far. Just playing with some of the other children on our floor as I type. We will just stay in until this evening. The kids will go Trick-or-Treating at a senior housing place down the street. Then we will come back for the Halloween Party & house supper!!!

This morning when I checked email, I found this really neat little prayer that was forwarded to us from Ron Mckinley, I thought I would share it with you too!!! It goes like this-

Dear Lord

Every single evening
As I'm lying here in bed,
This tiny little Prayer
Keeps running through my head.

God bless all my family
Wherever they may be,
Keep them warm and safe from harm
For they're so close to me.

And God, there is one more thing
I wish that you could do,
Hope you don't mind me asking
Please bless my computer too.

Now I know that it's unusual
To Bless a motherboard,
But listen just a second
While I explain it to you, Lord.

You see that little metal box
Holds more than odds and ends,
Inside those small compartments
Rest so many of my friends.

I know so much about them
By the kindness that they give,
And this little scrap of metal
Takes me in to where they live.

By faith is how I know them
Much the same as you,
We share in what life brings us
And from that our friendships grew.

Please take an extra minute
From your duties up above,
To bless those in my address book
That's filled with so much love.

Wherever else this prayer may reach
To each and every friend,
Bless each e-mail inbox
And each person who hits send.

When you update your Heavenly list
On your own CD-ROM,
Bless everyone who says this Prayer
Sent up to GOD.com.

AMEN

Thanks for that prayer Ron!!! I love it, and am sure many of our family and friends will appreciate it too!!!!!

Hope you all have a Safe Happy Halloween!!!!!

Carl just came up to me and said "Mom I have to tell you something" "Bull sit" I think he just learned it, and he is repeating it over and over again, LOL I am just going to ignore it and maybe he will forget about it:) Kids are so innocent aren't they.

Have fun Trick-or-Treating Syd and Sam, I will miss you and be thinking about you two tonight!!! I love you very much and cant waite to see you tomorrow!!!

Love to All

Kelly


Wednesday, October 30, 2002 at 05:40 PM (CST)

Good Evening!!!

I have a website for you to check out, it is the Rondal McDonald House website.

www.ronhouserochmn.org

They put a picture of Carl out on it from last nights Pumpkin Carving party!!!

Congratulations Joel and Linda Harmoning!!!! On the birth of your new little precious baby Girl:) How Wonderful!!!!

We are heading down to a House Supper!!!

Have a Great Evening

Love

Kelly


Wednesday, October 30, 2002 at 01:07 PM (CST)

Hello this Wednesday!!!

Hope your day is going fine!!! We are enjoying our day here together (RMH). Carl has made a new little friend. His name is Jaden. I mentioned it on one of my past journals a couple of nights ago. I had it all fouled up, it is his older brother, Zane that is being treated for cancer. Zane is about 8 or 9 years old? He is over at the Picu having a transfusion right now. Jaden stayed back here to play with Carl. They really enjoy playing with farm equipment together. It is Ironic, they also do some farming, and the Dad (as Carl would put it) works for the County just like Tom. I told Cheryl and Roy, (the Mom and Dad) that they will have to meet Tom this weekend!! They have alot in common:) They have a longer trip back home than we do, they live in western North Dakota.

Last night Carl was a TV star again. The Rochester News come out to get some footage of the Pumpkin Carving that was done here with the children:) I was able to tape it again. I wonder if they will film the Halloween Party on Thrusday. We have decided to not go home for Halloween. It sounds like it may be raining or snowing? I think Carl will be more rested up for his chemo on Friday, if he stays back here, and gets his rest before the big weekend starts. We will surely miss the Trick-Or-Treating with Syd and Sam, I was so looking forward to the kids being together. But I do think this plan will be best for Carl.

Auntie Jill will be staying with Carl some this weekend at the Hospital. We will be able to spend some time with the other kids then. One thing I am looking forward to is the opening of the movie (The Santa Clause 2) It comes out on November 1st. I thought It would be fun to take the kids to a movie!!!

Oh I did get some pumpkin seeds, we roasted the seeds that come out of all the pumpkins the house carved last night!!! Carl love them too:)

God Bless

Love

Kelly


Tuesday, October 29, 2002 at 03:13 PM (CST)

Hello everybody;-)

Having a good day here. We went shopping this morning to find Carl a pair of mud boots, they will double as Halloween Costume Fire Fighter boots, and then later, Geese feeding/pile dodging boots:) We got some treats and stopped by the Hosp. to visit with Eric Fischer for a little bit!!! Eric is keeping Tracy busy with "Horror Movies" hee hee hee

We are going to keep busy this afternoon with a pumpkin carving demonstration down in the community room at 4:00:)
I sure miss roasting pumpkin seeds this year. If anyone does any, you will have to save me some. I know Holly usually does a whole gallon bag full of them. I usually eat them til I get sick. It is just a tradition I guess.

Speaking of Halloween, this time of year always brings back memories of Trick-Or-Treating:) One of my fondest memories is back when my Cousin Tammy, My Sister Holly and I used to go "Early Trick-Or-Treating" We would usually go out at least a month early, sometimes even earlier. We conjured up a story to tell people. "The big kids would take all our candy, so we are out Trick-or Treating early" And of course we never were in costume. I dont remember really getting a bunch of candy, maybe one or two ladies that answered thier doors would give us something. They probably thought what little brats:)

Well I suppose I will sign off for now. Will update more later, have a nice day!!!

Love

Kelly


Monday, October 28, 2002 at 06:48 PM (CST)

Good Evening to everyone!!!!!

We just got back from a house supper!!! They served sloppy joes and chips with some excellent chip dip, salad, and a large assortment of Halloween cookies. Carl met another little boy down at the supper. His name is Jaden, he is receiving treatment for a brain tumor. He is about 6 months older than Carl. We are going to go and visit them in a little bit, his mom and I thought they would like to get together to play for a little while tonight:)

I forgot to mention earlier that Steve & Becky menk stopped by on Friday to see us. But we were at home and missed them:( we found a cute little note in our mailbox from them when they came to visit!!! Steve was back for his three month check up her in Rochester. Hope everything checked out Great Steve!!! And Thanks for coming by here!!!

The Dr. called this afternoon to give us the results on Carl's labs today. His white count is down, We need to start giving him the gmcsf shots again for three days. His Neutrophils are 250 these are the white cells that fight infection. They need to be in the 300's to be able to start chemo on Friday. This is due to the different chemo drugs that were used on the past round. The shots will help his bone marrow stimulate the production of the white cells.

I think we will go and play a little before we need to get ready for the night time ritual, as Carl would put it "Are you going to hook me up" he refers to his feeding tube.

Have a warm evening!!!

Love

Kelly




Monday, October 28, 2002 at 08:39 AM (CST)

Hello and Good Monday morning to everyone!!!

I was never so glad to get back here last night, not because I wanted to be back here, but the driving at night in the rain is not my favorite thing. It was four years ago this month when Bryan 11, baby Sam 3 months, and I spun into the ditch on 212 coming home from the cities. I guess I will never get that out of my mind. I think I was ticking off cars behind me, I refuse to drive faster than I feel comfortable. It took a bit longer Im sure, but we got her safe and sound. I think we will drive in daylight next time.

Yesterday the kids and I had dinner with my folks at Woodale. They had roast pork with mashed potatoes and gravy. It was very good. Dad was supposed to be coming back with me for his pre-op on Monday, then Surger on Tuesday. He had gone to the Dentist a week or so back. He felt Dad needed to have some teeth pulled that were pretty bad. So he has an appt. on Nov 1st with an Oral Surgeon, then the hip Surgery will be rescheduled as well. But having his teeth taken care of will be in his best interest, to reduce any risk of infection.

Dad has a very sweet roommate over at Woodale. His name is Leo Macht. He is such a kind man. Dad really enjoys his company. He said he is so nice to visit with. While we were there yesterday, the kids and I were in my moms room at the time, Leo had asked the nurse If I was there with the kids, and Carl. He asked the nurse If she would come and tell me that he wanted to see Carl and talk to me. We went into Dads room to visit with Leo. He wanted to give Carl a picture that he had in his closet. It is a picture of Jesus, a "Devine Mercy" print. He also gave Carl a little booklet that describes the Devine Mercy. He then gave all three kids a prayer card, he had quite a collection of them. That was so sweet of him. The kids all thanked Leo, and I gave him a hug, and Thanked him too:)

We are getting ready to head over to the clinic for Carl's blood work. That should be all we need to do there for today, unless they have any concerns about his counts at all, they said they will call us and have us come in for a transfusion if needed.

Hope your day is a Nice one!!!!!

Love

Kelly





Saturday, October 26, 2002 at 08:17 PM (CDT)

Hello to everyone!!!

What a nice day here at home!!! The boys were out with Uncle Chuck and Dad farming again for most of the day. They came back in this afternoon, and wanted to go back out and play some more. Antie Sheila & Sarah & Katherine came over for a visit, then Auntie Janet stopped by. Uncle John & Uncle Chuck came in when they got done out in the field. Sydney and I made some Chocolate Chip Cookies, so We put those out for everyone to munch on. Grandma & Grandpa Robinson stopped out tonight also!!!

I am working on a project for Carl. I read about this in that book I read by Emilie Barnes. It is a hand on heart prayer mission. I placed Carl's handprint on a piece of paper, with a heart on his palm. With a simple request asking for whoever to post this on thier refrigerator and when you see Carl's hand and are remined of him. To place your hand over his, and say a little prayer for his healing. This was done by a little girl that had Cancer, the "Heart on Hand" was started, she had many people praying for her healing. Today, ten years later, she is Cancer free. If we get this done yet tonight, we thought we would try to hand out his Handprint's at church tomorrow.

I better get the kids ready for bed, its getting to be about that time:( Have a nice evening!!!

Love

Kelly


Friday, October 25, 2002 at 09:35 PM (CDT)

Hello this Friday evening!!!

Today has been a very busy day for Sam and Carl. They spent most of the day out with Dad & Uncle Chuck hauling corn to town in the semis. Carl told me that he was fighting with Sam, and Uncle Chuck told them "Top Fighting" also they learned how to blow the air horn in the truck, and It sounds like they wouldn't quit:) Carl told us he was singing the bean song. I wont repeat the lyrics of that. So I think the boys had a pretty good day home together!!!

We dont have any plans for tomorrow, probably much of the same, that is if Uncle Chuck can still tolerate the company:) Grandma Phyllis may come out for a visit, she sounded a little hoarse on the phone tonight. Hopefully she is not getting sick.

Have A Great Evening!!!

Love

Kelly




Thursday, October 24, 2002 at 09:46 PM (CDT)

Good Evening from Franklin!!!!!

Yes we are home:) Tonight Carl and I packed up and headed for home. We got here about 8:30. Tom and John were out in the yard finishing up the farming for the night, I think we totally surprised them both:) Tom had been trying to call several times, but I wanted to surprise him and the kids too. Carl needed to have a platlet transfusion before we were able to go today. His counts are doing good, they just felt he would be best off having the transfusion to give him a boost for the weekend. It feels so good to be typing on my own computer tonight!!!!! What a great feeling to be home!!!!!

The next couple of days Tom will be taking out our corn here at home. So it will be good for me to be home to help out, and feed the guys here:) Sam is out of school on Friday too, so he can spend the day with mom and Carl:)
The Dr.s had given us the ok to be away til Nov 1st, Carl's 4th round of chemo. But I cannot leave our room at the RMH for a week. So I will head back to Rochester with Carl again on Sunday. He was set up with an appt. for a blood check on Monday. If we stayed home, they would have us get the blood work done in Redwood. I told the Dr. that we would love to be gone for a week, but with Tom farming right now, it would be impossible to "move out" of the RMH for this week. Then we would end up back on the waiting list again to get back in when we returned:( So anyway I thought I would stay back there for a couple of days, then we would come back home again. Carl will be able to Trick-Or-Treat with his Sister and Brother at home:) It will be a very precious time.

Last night Carl and Auntie Jill were on the Rochester news!!! They had filmed the Party at the RMH where a group of women had donated thier time to make (tied fleece blankets) for all of the children there. They presented them to the children at a (all child Birthday Party) It was so cute to see Carl on TV. I stayed up and taped the whole news broadcast, and of course it was the very last segment. The Guy on the news said "It is always better to give than receive" then he went on to tell about the RMH event. You could see Auntie Jill walking right towards the camera carrying Carl with his little bald head sticking out like a sore thumb:) It was pretty cute!!!

Looking foward to a couple of days back home on the farm!!!!! Have a wonderful Friday!!!!!

Love

Kelly


Wednesday, October 23, 2002 at 03:45 PM (CDT)

Happy Birthday to

Uncle Clair

Mrs. Robyn (Gores) White

Fred Fischer

Hope its a very special day for all of you!!!!!!!!

We were blessed with a visit from Auntie Jill today. When she arrived this morning, Carl rode his bike down on the elevator with me to greet her:) We found the park that we had heard about from Mandi (silver lake park) WOW what a beautiful park, complete with a huge playground equipment area, lots to climb on and swing and slide down. A beautiful lake, with thousands of Canadian Honkers to feed. Needless to say we brought a loaf of bread along and had a ball feeding the Geese, and a couple of pairs of ducks too!!! Now Carl and I have found a place we can go and have fun!!!! Maybe we will be blessed with some more warmer days to boot!!!!

Speaking of boots, that place was full of bird (cap) I knew you would enjoy that one Jenny Bloedow:) We told Carl that we will have to go shopping for some mud boots. He wants to get some "right now" but we thought that would cut down on the stepping in piles, cause they are everywhere. And some of these piles are (((BIG))) ok enought about bird cap.

We enjoyed lunch at Bakers Square!!! and then went to Barnes and Noble to book shop. I was looking for another book by Authour Emilie Barnes, The book that Sarah Sullivan gave me is just fantastic. I have almost finished it. It is called "A different Kind of Miracle" I have been so moved by this book. She (Emilie) is a cancer survivor, and tells about her strugles with cancer in what she refers to as (Cancerland) One of the things that Emilie says is that if we give our lives to Jesus three things are going to happen:

First, there will be someone who extends Christ's love to us.

Second, there will be someone who needs to know Christ's love through us.

And third, there'll always be someone watching and learning about the way Christ's love can change the world.

She also talks about how all of the notes, cards of encouragement, kind words and support, we receive are all signs of Christ showing himself to us and giving us strength through the works of others. Thanks again Sarah!!!

Auntie Jill is downstairs at a (everyone Birthday Party) with Carl, I think I will go down and join them:)

Love to you All

Kelly


Tuesday, October 22, 2002 at 05:07 PM (CDT)

Hello to everybody this evening!!!!

We got back from the PITC about 1:30 today, Carl is happy and still no fever to be seen. Maybe we will make it this round without a Hosp. trip after all, will find out more with a check of his counts on Thursday. We were just out in the kitchen to try to figure out what to make for supper. Carl settled on Mini corndogs and french fries, but he is very concerned about the ketchup situation. He has asked me three times "you got ketchup?" Someone had make a batch of cookies and brought in to the house, boy are they ever good. Chocolate chip peanut butter. They are still warm even. Nothing like that to warm a persons Heart and Soal on a chilly day:)

Please keep Eric Fisher in your prayers, he is having the "fever" thing that Carl usually gets:( He is in the Hosp back home in Dibuque. Did I spell that right, probably not. Also I have another little boy for you to keep in your prayers too. His name is Elijah Poolman. His is at the transplant center in St. Marys right now. He just underwent a Bone Marrow Transplant a week ago. His mom Jody is such a wonderful person, she has alot of strength!!! I have learned alot from her, and from her journals that she puts out on thier web Page.

www.caringbridge.org/ia/ericfischer
www.caringbridge.org/ia/elijahpoolman

The Bone Marrow Transplant the Elijah had is similar to what Carl will be having in a couple of months. Only they will use his own stem cells that were previously harvested instead of a donors bone marrow.

Will update more tomorrow, Carl is screeming that he wants to go check his french fries, and the guy sitting next to me on the other computer is getting irritated with him, I think. Oh well:)

Have a Good Night!!!

Love

Kelly


Monday, October 21, 2002 at 05:53 PM (CDT)

Good Evening to all


What a chilly evening it is, I don't think I am ready for winter yet? Where did the Summer and Fall go. When we first brought Carl to Rochester in August, he was wearing a little short outfit. Today he was wearing a little stocking cap and mittens. He insisted we walk, and take the stroller to the clinic today, so we bundled up and went. It really wasn't that bad this afternoon. I covered him up with his Pooh quilt, so he was very warm. Tonight however it feels like something is in the air:(

The clinic appt. went very good. His counts are still going down, the white count was 400, so we know it will probably go down further. Tomorrow morning Carl is scheduled for a transfusion. It is not an emergency thing, it will just help him not to feel so yucky. One thing I can say today is that Carl has just been a little booger. If that is a sign that he will be getting sick soon, I sure believe it. He has just been a major Crabby Pants:( But I told him he is such a good boy most of the time, he deserves to be rotten once in awhile. We will then go back for a clinic appt. again on Thursday to check his blood counts again, and evaluate if another transfusion is needed. It sounds like we may (possibly) be able to go home for the weekend if all goes well??? We will see????

Then next week my Dad has his pre-op on Monday, then his Hip Replacement surgery on Tuesday. If we do get home for the weekend, I will bring Dad back with me on Monday. We think Carl's 4th round of chemo will start on the 1st or 2nd of November. Nothing confirmed yet, it just figures out to be 21 days from his last round, per thier schedule. We are thinking too, that the tumor will be resected this time too, after his counts recover before the next round.

Have a wonderful evening, we are going to snuggle up and watch TV tonight!!!!

Love

Kelly


Sunday, October 20, 2002 at 06:40 PM (CDT)

Hope your Sunday has been a nice one!!!!

We have been busy with lots of visitors today, it has been so nice to spend time with family and friends!!! We first were surprised by Jim & Shannon Nesburg, they were at a Birthday party this weekend and thought they would come by for a visit!!! Then Tom and the kids arrived, Matt & Mandi, then John & Sheila & the girls, then Uncle Chuck, and Eric & Tammy Thorstad all stopped by for a visit!!!!!

Tomorrow we are back at the clinic for blood work, and a visit with the Peds Oncologist. We should find out what the plan is for the next week or two. Bryan does not have school tomorrow, so he will be staying here with us tonight!!! It will be so nice to have his company tonight and tomorrow too!!!

Have a nice evening, will update more tomorrow:)

Love

Kelly


Saturday, October 19, 2002 at 12:42 PM (CDT)

Robyn & Kevin

Your day is finally here!!!! It is so hard to believe, after all of the planning and preparations it is finally here, Today is your day!!! We are sitting here thinking about you, hopeing everything goes as you have dreamed. I am praying that Sam will walk down the isle with that little girl and make mommy so proud of him. Carl and I are with you both today, in spirit and prayer.

God Bless you both as you exchange wedding vows today!!!!!
All our Love to you, may you have a most Beautiful Day!!!!

Love and Hugs!!!!!

Kelly & Carl






Friday, October 18, 2002 at 07:33 PM (CDT)

Hello to all

Hope your all having a good one, on this chilly fall day!!! We got a visit this morning from Uncle Mark, Auntie Janet & Eric on thier way through to Ill. This afternoon I took Carl into the clinic to have a spot checked on his back. I was not sure how he got it, it looks like a sore on his lower back, under his waistband of the diaper. I got this worry going that it could be shingles. That can sometimes happen when on chemo, it has something to do with the chicken pox virus becoming activated. It is some kind of an immune system response, But I thought it should be looked at. The Dr. agreed that it could be shingles, they took a swab of the area, and will send it to the lab. We will find out results on Monday when we go back for our appt. then.

Uncle Chuck stopped by this evening on his way to Ill. too. Carl enjoyed his visit, we had some of Auntie Sheila's homemand chicken noodle soup for supper, and Uncle Chuck fed Carl his, spooning up all of the carrots for him:)
Carl was very sad when Uncle Chuck left, but was better when he heard that we probably will get alot of visitors on Sunday, when everyone comes back through from Ill. going back home!!! He was pretty happy about that!!!!

Well I suppose we will get Carl hooked up with his tube feeding for the night, it is getting to be that time already.

Have a Great Night, and to those in Ill. dont stay up too late, tomorrow is a big day!!! Love to you all there, We miss you lots:)

Love

Kelly & Carl


Thursday, October 17, 2002 at 04:43 PM (CDT)

Hello this Thursday Evening

Hope it has been a good day for you, ours has been very fun!!! Grandma Phyllis, John & Sheila & the girls, and Jackie, Jenny and Jessie all stopped by this morning on thier way through to Ill. It was fun visiting with them!!! We had Carl's appt. at the clinic today too. Tom and Syd & Sam were here to join us there. We were able to use this cute little fire engine stroller, built for two. So the two boys had a ball riding around the clinic together in that:) Of course I forgot my camera, so I didn't get any pictures of that:(

Carl's appt. went very well, his counts are still holding thier own, The Dr. thinks he will probably make it through the weekend without a Hosp. visit!!! She (Dr. Kahn) thought that Carl looked so good compared to when she saw him the last time!!! He has been having a pretty good day, he is still carrying his hankie with him, in fact I started to tie it around his neck, its alot easier to find when he needs it. It works like a charm!!!

Tom and the kids are getting ready to head out for Ill. they will be making the trip without me after all. Our friends Chris & Randy are sick with a horrible cold. I feel so bad for them. I probably feel worse for them, than they do for not being able to come stay with Carl. I just want them to get better. Carl and I will hang out together it will be a nice weekend. Sarah Sullivan had gone to a conference here in Rochester, and gave me a wonderful looking book that she got there from a woman, (cancer survivor) who wrote the book. I dont have it in front of me or I would tell you the name of the book. But I am looking so foward to some peaceful quiet time to spend reading this weekend too!!! Thank You so much Sarah, that was so very thoughtful of you. You are always so giving!!!

Well gotta go Bryan is now here, and Tom wants to get going, so I will sign off and update more later!!!!

Love to all

Kelly


Wednesday, October 16, 2002 at 02:23 PM (CDT)

Good Afternoon!!!

We are doing so good here!!! Carl is feeling Great, at least he is acting it, considering this last round of chemo. I discovered a little helpful trick that really works for him. I gave him a bandanna hankie to carry around, and when he feels like gagging or pukeing he covers his nose and mouth up. It really works, I think the smell thing triggers this the most. We went to Target this morning to pick up a few things for the weekend, and he carried his hankie with. He used it a few times, and never puked once:)

When we were leaving Target I noticed they had a portrait studio there. So we stopped by there, and I thought I would have Carl's picture taken. Since the other kids get thiers taken in school, and It has been so long since I have got his picture taken anywhere. So we put on a cute little Halloween outfit that I bought him and he posed for the girls at the studio!!! They look really cute. They gave me access to look at them online, if anyone wants to go into that website they may check them out too!!

It is www.yourportraitstudio.com

You have to enter - Robinson in the spot that says last name, then the code on the next page is - Carl

It will bring you into the selection of pictures that they took. We ordered a small package, I wanted to give the Grandparents an updated photo of Carl and of course the Aunties and Uncles and friends too. I didn't order a bunch Im hoping someone with more technology than me could help us figure out how to duplicate a couple so we will have more to hand out.

Let me know if you have trouble getting into this website, I will try to help you out!!!

Carl wanted Mcdonalds for lunch, so that is what we got, He has eaten all of his McNuggets!!! and is asking for some more!!! I am really so proud of this little guy, he just amazes me day after day:)

Have a Fantastic Day, Looking foward to seeing everyone at the Wedding this weekend. (Jenny- I did find an outfit)

I better go Carl just said "Mom I capped my pants" LOL

Love

Kelly


Tuesday, October 15, 2002 at 07:43 PM (CDT)

Good Evening to you all

It has been a pretty good day for Carl!!! He was able to go back to "The Donald" house today. He was very excited about that!!! He has started to feel some of the effects of the Cisplatin chemo drug that he got this round:( He is not constantly sick to his stomach, but he will be going along just fine and something will trigger him to start gagging. Like a smell, or looking at food etc. They were serving a house supper here tonight, and Carl insisted on going down to the dining room. When we got down there, and were in line getting a plate of food, Carl started coughing and gagging. So we left and came back upstairs for awhile. We went back and tried it later, and Carl was fine. He was able to eat some cheesy potatoe hotdish!!!

Dr. Anderson told us today that Carl had been given the highest dose of this drug, higher than any adult would ever have been given. He said that Carl is doing so well, so far, post chemo. He said an adult would be pukeing steady for about a week straight. He said he would be surprised though, if when we come into the clinic for our appt. on Thursday, I tell him Carl hasn't got sick at all. He thinks it will be better within a couple more days. So that is good. This little guy is such a trooper!!!!!

I can tell he is not feeling very well, when I told him I was coming out here in the hall to look at the computer, he said he would waite for me in the room. He is laying down right now. I will soon hook up his G tube feeding for the night. He also will be getting the GMCSF shots every night now too ( this is a growth stimulating shot that boosts the recovery of the white and red blood cells) Needless to say he is not exactly thrilled about getting shots again.

Tomorrow will be kind of a quiet day. No place we have to be:) so we will probably just hang out and take it easy!!! Tomorrow night Holly will be bringing Dad back here to stay over for his Dr.s appt.s on Thursday. We are still planning on going to Robyn's Wedding, Tom and Sam & Syd will come on Thursday morning. Our wonderful friends Chris and Randy Johnson are going to be staying here with Carl for the weekend while we are gone. We are keeping our fingers crossed that he will hold his own, and not have his counts go down too quickly before we get back. We are so blessed, to have such friends that we feel this comfortable leaving Carl with!!!!! We hope and pray he is easy on them:)

Well I had better get back and check on Carl, he is probably sleeping already. Have a nice evening and we will update more tomorrow!!!

God Bless

Kelly


Monday, October 14, 2002 at 06:57 PM (CDT)

Hello this Monday evening!!!!

Hope it has been a nice day for all of you!!! It sure was a pretty one here. A bit windy but it was another pretty fall day!!! Carl has been able to spend some time with our friend Eric this time in the Hospital. He has enjoyed Eric visiting our room, and has also enjoyed going for walks and stopping by Eric's room. He almost cleaned Eric out of house and home the last time we stopped over there. He spotted some Doritos that Eric had in his room, and wasn't shy about helping himself to some. Last night we both (Tracy & I) took some pictures of Eric & Carl together. So we will have to add them to the web page. Tracy will probably get one on thiers before we do, so you will have to check on there webpage it is:

www.caringbridge.org/ia/ericfischer

Eric likes to get notes on his webpage too, so dont be afraid to leave him a hello, Im sure he would Love it!! We also got to meet the rest of Eric's family this weekend, they stayed at the RMH too!!! Eric has 3 brothers, Mark, Ryan, and Alex. I told Tracy, if Ryan, Alex, Sam & Carl could all get together, they could really do some damage:)

Tonight we are getting ready for the last of the 3rd round of chemo drugs to start. They get started about 8:00 or 9:00, and run for about 4 hours. The last two nights Carl got sick a couple of hours into it. But we think it is from the tube feeding. Tonight they may waite to start the feeding til after the drugs are through. Carl was weighed this morning, and was 30 pounds!!! That was his starting weight, when this all began. So the tube feedings are helping to keep the nutrition going.

Wishing you a very nice evening!!!

Love

Kelly


Monday, October 14, 2002 at 08:29 AM (CDT)

Ok now you guys are making me cry, Katherine, Kiri, Jerri & Kaden.... Now Im gonna have to go fix my face before the Dr.s come in here. I cannot tell you all how much your support helps us. Your notes really keep us going, and it truely is amazing to hear, the prayer that has spread out in all directions for Carl. It makes me cry for Joy, Hope and a feeling of Peace that so much Love is happening!!!!!

Last night Melissa came to visit, and stayed over at the RMH. She will be visiting us today too. I thought then I could get out for a bit and find an outfit for the Wedding. It should be alot quieter at the Mall than Sat.

Hope you all have a Great Day!!! Will update more later:)

Love

Kelly


Sunday, October 13, 2002 at 02:39 PM (CDT)

Good Afternoon!!!

What a beautiful Fall day here in Rochester, the leaves are so pretty. Tom spent the night here at the Hosp with Carl. I was able to take Bryan, Sydney & Sam to a movie thisafternoon, we saw "Like Mike" We all enjoyed it!!!!!! This was the first movie Sam has ever been to. He was amazed at the big screen!!!! He said "It is like a big TV screen Mom!!!!!" That was alot of fun!!!!!

Yesterday afternoon, Syd and I went shopping. We found an outfit for Syd for Robyn's wedding. I hate shopping for myself so I still didn't find anything yet. Herbergers here was having a grand opening, so everyone in town was there. I did find a couple of things that I liked, but didn't feel like standing in line for 30 minutes to try it on. So I will have to shop more later. Sydney suggested that we both get our hair done. So we found a great little beauty shop that could get us both in. It was fun for just us girls to get away for awhile together. Needless to say, The Dad was not real happy when we got back. He thought we had left him with Sam a bit too long. Sam was getting tired of sitting around the Hospital that long and was bouncing off the walls:) HeeeHee Oh Well, Stuff Happens:)

Carl has been doing very well with these two different chemo drugs, they are called (Etoposide) and (Cisplatin) the second is the one that can cause bad Nausea. He has only got sick a couple of times, and Tom thought it was due to the tube feeding filling his tummy up too much, not necessarily that he was feeling pukey.

One other thing that has happened today is that one of the ports on his Hicman has clogged up. They are not able to flush it out with hepperin. They shot a dose of some drug called TPA wich is a Clot Buster into his tube, and that will be left until tomorrow morning. Then they will try to flush again with Hepperin. The Dr. told Tom that this is can happen and is not too serious.

This round of chem should run til about midnight on Monday. Then we should be able to leave the Hosp. sometime on tuesday. They are most concerned about keeping Carl hydrated, with these two chemo drugs he is on this time. So he may stay awhile to get fluids to flush his system out.

Have A Wonderful Fall Day!!!

Love

Kelly



Saturday, October 12, 2002 at 10:54 AM (CDT)

Hello and Goodmorning!!!

We are all here at the Hospital right now, I may sneak out with Sydney to shop for something to wear at Robyn's wedding, in a little while. Sam is enjoying the play room and Bryan & Sydney just ran out to get a pop.

Carl had a Great night. He is feeling very good today too considering he started the new chemo drugs last night. They are supposed to make him sicker that the previous regimend that he was on. So glad he is happy and playful, and has been eating as well!!! I think he is so pleased that his family is all here:)

The gal from the Child life area was in our room earlier too, she will be letting us know when they are doing a hellicopter pad tour, they do these on Saturdays, that would be fun for the whole family to experience!!!

Have a wonderful Fall Saturday!!! And Whats up with those Twins?????:(:(:(:(:(:(

God Bless

Love

Kelly



Friday, October 11, 2002 at 01:58 PM (CDT)

Hello this Friday Afternoon!!!

We are having a nice day here, Carl is now hooked up to his new G tube with a feeding in progress. He is able to eat a full diet as well today!!! So he is eating a little of everything. Thank Goodness, after yesterday!!!!!

I wanted to Congratulate Kiri on getting her Braces off!!!!
That is such good news!!!! We cant waite to see you with your shiney new smile:):):):):)

I asked the Dr. again this morning about the bone marrow test, he said that it looks Great!!! A super report, it shows a huge reduction of the cancer cells!!!!!

Looking foward to Tom and the kids coming tonight!!!!!! We will be watching the game of course!!!!! Let the Homer Hankies wave~~~~~~~~~~~;)

Have a Great night!!!

Love

Kelly


Thursday, October 10, 2002 at 05:43 PM (CDT)

Hi again today:)

Carl is starving, so we are currently trying to finagle some food out of the nurse. He has eaten about 6 whole popsicles, a cup of chicken broth for lunch, working on a second cup of broth but keeps complaining about it, I keep hearing "I want carrots in my soup" Auntie Sheila you have got Carl spoiled with your great home made chicken noodle soup!!!! Now nothing will compare:)

Tracy and Eric Fischer have checked in this afternoon!!! They have done it again, brought Carl a bunch of presents, they came with 3 Shrek Figure sets, complete with every single charicture from the Movie, and a "Big Talking Donkey" he says a bunch of lines out of the movie;) Needless to say Carl has been busy playing ever since. Tracy if Tom was here he would yell at you, all of Carl's aunties, and myself included keep getting in trouble for getting this kid whatever he asks for:)

Well we saw the Dr. this morning and really dont know anything more than before. The bonemarrow results were not back yet, and the urine test is about the same. We do know that the tumor can be removed now, it is small enough to remove. So that will be done in the near future. The chemo will either start tomorrow night or Saturday night? depending on how Carl is coming along. And I would say he is doing Great, but he still has tummy pain whenever he is moved around.

We are looking foward to Tom and the kids coming back to Rochester tomorrow night!!! Carl is excited to show Sam his new toys. Oh Sydney remind Dad to bring the "Shrek" Movie along from home:)

NEWS FLASH: Dr. Anderson was just in and said that Carl is looking so good!!! He said that chemo should probably start tomorrow night. He said that Carl has made his day!!!!!

Have a nice evening and a Great Friday!!!!!

Love

Kelly



Thursday, October 10, 2002 at 08:52 AM (CDT)

Good Morning to everyone!!!!!

Carl slept well through the night, he woke up a couple of times with a sore tummy, so he was given some pain meds. That seemed to help him get more rest. The Dietary nurse was in and said that Carl will be able to eat some regular food today. Last night he heard me eating some chips, and he said "I want some chips" So at least he still has an appetite going:)

I just got a Phone call from Sydney's Grandma in Arkansas, Helen!!! We had a very nice visit!!! She is such a very sweet person, I Love her dearly!!! We were talking about all of the Love and Support that our family has received from everyone, How wonderful it is, and I said the thing that bothers me the most is "How can we ever Thank and repay everyone" She said that what she has learned throughout her life is that you cant, All you can do is pass it on. I told her I believe you are right. I think there is a song about that too:) I think it says something like "Dont let the chain of Love end with you"

Tom just phoned and said that Ron Svoboda a Coworker at Renville County had a Heart Attack yesterday. Ron and his family could use alot of prayers right now too for his recovery, please remember them as well!!!!

The nurse was just in and will be back in a couple of minutes to change Carl's dressing for the G tube, so I will sign off for awhile. The Dr. should be in shortly too so we are looking forward to hearing results from the bone marrow done yesterday, and the Urine test (checking the level of the Neuroblastoma in his body) that was done last Wednesay. So will update more later!!!!!

Love

Kelly


Wednesday, October 09, 2002 at 01:38 PM (CDT)

Good Afternoon from St.Mary's Hospital

Carls room no is 3-110

Phone no is 507-287-4623

Carl had his G tube placed this morning, and also had a bonemarrow test redone while he was out for the G tube surgery. So glad they did the two at the same time, so much easier than having to put him out twice. So far he has just been sleeping since he got back to his room. He is such a little sweetie, when the nurse was changing his diaper, all he asked for was to be covered back up. It just breaks your heart, he is so good through all of this.

My Dad had his final test for this week this morning, he will need to be back in rochester on Monday to see the Surgeon again. So Holly will be bringing Dad back on Sunday. Tom will be taking Dad back home today, then he (Tom) will return with the other kids on Friday, he will stay through Monday and take Dad back with him after his appt., Holly will take Syd and Sam back home with her on Sunday, when she brings Dad back to Rochester. Then Dad has two appts. next Thursday the 17th, Holly is bringing Dad back for those, and will stay and take Dad back home after. It kind of makes your head spin doesn't it.
I think I could use a couple of cocktails!!!!!!!!!!!!!!!

Well the rest of the day will be pretty quiet here for Carl, I expect he will just sleep most of it. He will not be able to eat or drink for 24 hours, just his IV nurishment.

Will update more later, I am on the waiting list for a laptop, so hopefully one will show up soon!!!!!

Have a Nice Day!!!! Go Twins!!!!

Love

Kelly


Tuesday, October 08, 2002 at 04:07 PM (CDT)

Hello to everyone!!!

We just got back from the Clinic with Dad, his one appt. turned into about four, and they need him back tomorrow for another test:( They are puting Dad through the ringer too. As for Carl, his blood turned out normal today, so it is a go ahead for the G tube surgery scheduled for tomorrow.

Tom will stay on here with us til Dad is through with his appt. tomorrow afternoon, then they will head back home. We plan on Carl being in the Hosp. from tomorrow til about next Tues? depending on when the chemo will start. It is supposed to run for four days this time.

Will update our Hosp. room no. and Phone no. when we get admitted to a room in the morning.

Have a Great night!!! Go TWINS!!!!!

Love

Kelly


Monday, October 07, 2002 at 08:50 PM (CDT)

Hello from the RMH

We are settled in for the night, Dad watching the Packers of course:) Carl just got his tube feeding hooked up, Tom is washing clothes:)

We were over at Mike & Lisa Billmeiers earlier tonight, we brought back thier carseat that we had borrowed for the weekend. Carl enjoyed playing with thier little boy Trey:)

Tomorrow Dad has one more appt. at the Clinic, then He and Tom will head back home again. Carl needs to have blood drawn, to check platelet count before he has his G tube put in on Wednesday. So we will all go over to the clinic together in the morning, then should be done there by noon.

Have a Great Evening!!! Go Packers!!!

Love

Kelly


Monday, October 07, 2002 at 07:00 AM (CDT)

Good Morning!!!

Tom is getting Syd off to the bus right now, we will soon be getting Sam up to get ready for Headstart. Getting Sam up in the morning is no picnic:( we try to give him every last second of sleep before trying to wake him up. He can be such a Growly Bear in the morning.

Today we head back to Rochester, my Dad has several Dr. appts himself today and tomorrow at Methodist and Mayo, so he will be making the trip with us, and staying with us at the RMH for a couple of days. Carl will need to have blood work on Tuesday, then will be admitted to St. Mary's on Wednesday to have a G tube placed. It will need to heal for about 3 days then round no. 3 of chemo will start. This round will last for four days. He will be given a couple of different chemo drugs this time. They will make him more sick than he has been during the first two rounds. One of the side effects from one of these drugs (Platinum) is a chance of some hearing loss. They assured us that the hearing loss is just (high tones) It is very scarry knowing that things can happen as a result of using these very powerful drugs. We just have to put our faith and trust in God and believe that He is giving the Dr.s the skill and wisdom to treat this little guy.

We have had a very nice weekend here at home, it sure gets us through, and gives us something to look foward to as we face these long stretches of time away from home. We have been so blessed to have such help when we do get home, with meals made for us, and deserts from Grandma Phyllis!!!!

Have a very nice Monday!!!

Will update more later, from the RMH

Love

Kelly


Saturday, October 05, 2002 at 07:14 PM (CDT)

Good Evening to everyone!!!

We are enjoying some homemade chicken noodle soup, with homemade noodles, and hot chicken sandwiches that Auntie Sheila made. Uncle John, Auntie Sheila & the girls brought us a wonderful supper tonight. Sam is still out with Uncle Chuck combineing corn. They should join us pretty soon!!!

I have added some different pictures that we took today of the boys with Uncle Chuck!!!

Wishing you all a very Great evening!!!

Love

Kelly


Saturday, October 05, 2002 at 11:04 AM (CDT)

Good Morning from Franklin

What a beautiful Fall day back home!!!!! Tom and John are busy Grinding corn up at Grandpa Jims, and of course Sam and Carl are along to help. I told Tom that the boys better not come home all wet and full of corn dust, like they had the last time they went along to help:)

We may call Uncle Chuck on his cell phone in a little while, to see if he wants these two little boys out with him combineing corn. They have not got a chance to do that yet this Harvest season. That is always the highlight of the Fall. The kids usually fight over who gets to ride first and for how long!!!

I have changed the pictures again (more from the benefit)

Hope your day is a Beautiful one too!!!

Love

Kelly


Friday, October 04, 2002 at 06:00 PM (CDT)

Just got back from the Clinic, we have been there since 8:00am:( We are all so tired. Getting packed up to head out for home!!!!!!!!!!!!!!!!!!!!!!!!

Have a good evening!!!!

Love

Kelly


Thursday, October 03, 2002 at 04:28 PM (CDT)

Hello to All

New Pictures Added!!!

Today has been a busy day for Carl, without any Dr.s !!!!!
Carl has been on the phone quite a bit, he has talked to Grandma Phyllis, Brother Sam, Uncle Chuck, Auntie Jean, Auntie Jill,& Cousin Melissa!!!!! We went to Walmart, then to McDonalds for lunch. Auntie Janet threw a roast in the oven for supper, boy it smells so good about now!!!

We are expecting Mike & Lisa Billmeier & thier little boy tonight!!! We are borrowing a car seat from them for the weekend to get Carl back home. We dont have one here for him. So that will be fun to see them. Carl is excited to have a little boy come to visit him tonight, he keeps asking when are they are coming.

It has been nice not having to sit around the Hosp. or Clinic today, I even got to take a little nap while Auntie Janet buzzed around the RMH with Carl on his new little bike. Tomorrow will be a very busy day of Clinic Appts. We will not get started home til after the last one that is at 4:00. We are looking so forward to a couple of days back at home again!!!

Thanks Shannon for the info on the Pumpkin's for St Judes Childrens Hospital, I hope everyone that comes into Al's will buy one for the cause of Childrens Cancer!!!!!

A very nice evening to everyone!!!

Love

Kelly


Wednesday, October 02, 2002 at 01:55 PM (CDT)

Good Afternoon from The RMH

We got the abdominal ct scan out of the way early today. We have not heard an official report on the scan, but the Dr reading it before we could leave the radiology area had commented that it looked really good!!! We will hear from our DR. on Friday when we go back to the Clinic. We will have a free day tomorrow, then Friday will involve blood work in the am, then an Audiology appt. in the afternoon, then late in the afternoon, an appt with one of the Peds Oncologist Drs., then after that we will meet with a Surgeon who will go over whats involved with placing a G tube in carl (a feeding tube that goes right in his tummy) also he will brief us on the removal of what is left of the tumor (the mass, around the kidney/adrenal gland that started this whole thing) So everything is moving along very quickly it seems.

Today before we left the ICU area, we were allowed to go into the new Transplant wing, for a look. It is brand new, and will be open soon. It will be open by the time Carl will be having his transplant. It is very nice in there, and It helps to have an idea of where we will be at, since we will be spending quite a bit of time there eventually.

We have made a tuna hotdish for Carl, we thought it would taste good to him on such a gloomy fall day:) It is in the oven right now!!! Carl has got Auntie Janet chasing all over the halls here with him for whatever he wants:)

We added new pictures from the Benefit!!!! I will try to change them often to get all of them out there!!!

Hope your day is a Good one!!!

Love

Kelly


Tuesday, October 01, 2002 at 07:34 PM (CDT)

Hello again from us Crazies here in Rochester;)

We have Great news about the Harvest, And about the rest of the week. The Harvest was a Huge Success, Dr. Anderson was just in to update us on the results. He said that they got enough stem cells to do 3 Stem Cell Transplants!!! Like Auntie Jill said tonight, this little guys body must be just working overtime to get results like that!!!!!

His line will be removed tonight (the line used for the Harvest), and tomorrow we will be discharged from the Hospital. We may have a couple of tests here in the Hosp. before we can leave, if they can get them scheduled for tomorrow. If not, they will be scheduled for Friday at the Clinic. Carl needs to be seen in the Clinic anyway on Friday for blood work. So then, we are able to go home for the weekend!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Janet and I are so excited right now, we feel like we want to call everyone we know and tell them:)

We need to return to Rochester for Round no 3 scheduled to begin on either Monday or Tuesday. But we will sure enjoy our freedom while it lasts:)

God Bless

Kelly































































Tuesday, October 01, 2002 at 03:15 PM (CDT)

Hello again!!!!!

Carl slept for the last hour & a half of the Harvest, so it was a very successful procedure!!! At least the getting it done part, if they got all they need, is the only question, but we feel confident that it will be a great plenty!!!!!

Thank You Krista for the Beautiful picture on the Gazette website, thank you for posting that out there!!! everyone will be able to look at that:)

Yes the little mouse and Madelian are bringing us much needed luck!!!! I have to share with another story of luck,
Tom found two shiney brand new pennys one day. He picked them up, told me about it, and we agreed to both carry a penny with us at all times for good luck. Well I have misplaced my penny several times, always finding it though, but taking very seriously, that we both would try to carry this penny always, and not loose it. Well yesterday I put my penny on the shelf by the phone in our room on the regular floor, in room 3-147. I forgot about it, and we were moved to our room up here in the ICU. Well last night for whatever reason I happened to think about that penny. I thought about it, I felt totally sunk. It was probably not in that room, where I left it earlier in the day. I debated over going down to our last room to see if it was still there. I thought no, who ever is in that room will think I am a nut. But I couldnt stop thinking about that penny. So I got up, told Janet I would be right back, and headed down to hopefully find my lost penny. I got to the room, and a new family was in there. I steped in, said Im really sorry to bother you, but I was wondering??? I explained about the penny to this family. I said, I know this sounds really stupid, and this man (a dad of the sick child there) said, "No that is not stupid, we totally understand" Well the man suggested that I check with the desk on that floor, maybe the cleaning lady found it and turned it in. I thought ya right, why would she turn it in, and the Nurse is going to think Im nuts. Well I did ask the Nurse, and explained about the penny to her too. It was not at the desk either:( Well now Im feeling about as stupid as you can imagine. I headed back to the ICU almost in tears. Just then the man from our old room came up behind me, he said "excuse me, did you have any luck" I turned around and shook my head, no. I handed me a $2.00 bill, he said "you take this, it brought us luck, maybe it will bring you luck too" Well by now I am walking back to the room bawling, I walked back into Carl's room, and had regain my composer before I could tell Janet about the penny. So that is not the end of the story, when I was pulling out the couch to turn it into a daybed, I found a penny under the cushion:) So now I will carry my $2.00 bill and my new penny. Both have the words "In God We Trust"

Love

Kelly


Tuesday, October 01, 2002 at 09:59 AM (CDT)

Good Morning from the ICU

Carl began his Apheresis thismorning at 8:35. So far so good, he is tolerating everything very well. This machine sounds like a washing machine. It is suppose to seperate out the stemcells from the blood. It works like a cream seperator, in that it layers all of the blood products, and takes out what is needed, and gives him back the rest. The blood is frozen til later, when he will get it back after a very strong round of chemo.

One of the things that is measured when a Stem Cell harvest is started in an adult for instance, is a (cd34) level, This is an amount of antigen present on the stem cells. The nurse explained the whole deal to me. When you look at a sample of blood on a slide, you can see a red cell, you can see a white cell, but you cannot see a stem cell. A stem cell will turn into either a white, or red cell depending on how the body is needing to use it. The stem cells carry an antigen called a (cd34) and this is what is measured, since you can not see a stem cell at this stage. So back to the point. His level was measured as we started the Harvest, it was (71.8) they like to have it at least a level (10) in an adult to begin this. So this level in a child is incredible!!!!! The Dr. will be very pleased when he hears this, it will be very exciting to talk to him when he checks back with us this evening.

The Harvest will be finished about 1:35pm, if he tolerates this well they should be able to run the full 5 hours as hoped. If not, it would need to be completed tomorrow. But he is doing so well, we are very confident that we can get this all done today!!!! It is so good to have Auntie Janet here to help play with Carl. He is starting to recover with his white count today too, it is 2500!!!! So he is getting more active, and wanting to be entertained as I had expected:) We are armed with lots of toys from the child life area, several movies, a tractor we brought from home, and a cool aquarium with bubbling fish in water that we hooked onto his side rail.

Janet brought the tape Uncle Clair put together of Carls benefit. We watched it twice last night:) It was so Great!! I really enjoyed it. I wish Tom could have been here to watch it with us too. Im sure when we get together, we will be able to do that, and will probably watch it many times too!!! Thanks to Uncle Clair and Auntie Jill & Jessie & Jackie for filming the Caravan (How Awsome) and the coverage at the Waffel Feed.

Janet brought a roll of film along of the Benefit, we thought we would get it developed today, after Carl is done with the Harvest. Then we can get some photos out on the web page for you all to see;)

I will be sure to update later with any new news!!!!!!

Have a Fantastic Day!!!

Love

Kelly


Monday, September 30, 2002 at 06:26 PM (CDT)

Good Evening to all!!!!

First things first - our room no in the ICU is 3-558

- our phone no is 507-287-4313

Carl came out of his procedures fine, when I got back in the room with him, he was freaking out from the anesthisia:(
He wanted to be held, and at that time they had a dozen wires still hooked up to him. He also had his new Line in for the Harvest tomorrow, and they got the feeding tube in. Carl was not pleased with the feeding tube, he kept trying to itch his nose and grab at it. Auntie Janet and I had all we could do to keep this little guy restrained for awhile til the drugs wore off. The Nurses said he was fighting going to sleep with all his might. They said boy is he ever a strong little boy, they had trouble getting him down for the surgery.

He is back in his bed now, and sleeping like a baby. Im not sure what time the Harvest will start tomorrow, but it will be about a 5 hour procedure. Hopefully he will not be too active quite yet. It will be a challenge keeping Carl entertained and stationary. This line is in his groin area, it doesn't seem to bother him right now, but if he is trying any funny stuff, it could hurt, it is a rather large needle that they used. We will be happy to get this done, and within the next day or two, his counts should be recovering again!!! The Dr. mentioned that they may put in a G tube, it is a feeding tube that goes directly into his tummy. That would be alot easier to maintain for the long haul, and it wont bother him like the nose tube. This will be done after his counts recover, so it could be at the end of this week.

A Dr. was just in to talk to Janet and I, he said the Harvest will begin early in the morning, about 8:00, so that will be good to get it out of the way first thing tomorrow!!!!

I just found out that Auntie Janet & Uncle Mark celebrated thier Golden Wedding Anniversary, 29 years on the 29th of September, so HAPPY ANNIVERSARY AUNTIE JANET AND UNCLE MARK!!!!!!! WE LOVE YOU BERRY MUCH!!!!!!!!!!!!!!!

(thanks alot Tom for telling me about that)


Have a Great Night!!! Will update you all tomorrow!!!!!

Love

Kelly


Monday, September 30, 2002 at 02:29 PM (CDT)

Good afternoon to All

Carl's white count is up to 600:) today, so the Stem Cell Harvest will happen tomorrow. We have already moved up to the ICU for the procedure. I will update later with the room, and phone number. A surgeon is in his room right now, putting in a main line for the Harvest. It will be in his groin area. The nurse will also put in a feeding tube while he is out for the other, to make it a little easier on him. I also suggested they do his site care while they are at it, to get that done for the day too. Then he can be done with all the messing with him for the rest of the day. He heard us say feeding tube and was not very happy about it. But once it is in, it shouldn't bother him at all. He has not eaten anything since Thursday, so he needs to get some nutrition going. He has lost almost 2 pounds:(

But like the first post chemo round, Carl bounced back like a pro, and I fully expect him to do the same this time!!!
Auntie Janet is on her way here to spend a few days with us, She called before she left, I told her we are in a different room, she said she would find us:) Carl has been asking for her, and for Auntie Jill today. Im afraid he has got these Aunties wrapped:) He sure enjoys all of thier attention. The nurse gave me a parent pager, they will be calling when they are all done with everything. I think I will run down to the Cafeteria and grab a pop.

Have a nice afternoon, will updated more later

Love

Kelly


Sunday, September 29, 2002 at 06:45 PM (CDT)

Hello this Sunday evening!!!

I am back at the Hosp. with Carl for the first time since Friday night. Uncle Chuck came to visit Carl today, he stayed with Carl so Tom, Sam & I were able to get out to the store for a little while. Sam felt very bad he was not able to come back to the Hosp at all, but I explained to him that Carl could easily catch his cold right now. They all have left now to head back home. It was hard to leave Sam with the big crocodile tears filling up in his eyes:(
I told him to give me a call when he got home.

Carl's white count has started to come up a bit. It was 200 today. Up from 100 the past two days. It is a start and it is going in the right direction, so that is good. The temp is still hanging in there though. It is so hard to not be able to do anything for him right now. He asked me for something to eat, and we tried a popsicle, but it hurt his mouth too much, with the mouth sores:( I left the room to go into the dietary room to get him the popsicle, I told him "you stay here, I will be right back" Like where the heck is he gonna go anyway. We also tried some ice chips, but I think they were too cold:( Well tomorrow will be a better day!!!

Uncle John, Auntie Sheila and the girls went to the TWINS game today:) they went with the Birch Coulee 4H group!!! They had a HOMER HANKIE for Carl, how exciting, I bet it was so fun to be at the game. We have hung his HOMER HANKIE on his IV pole. Along with his Windchime from our little buddy, Eric Fischer, and he got a little tiny pumpkin with a spider in it, That came from a very nice Gal we met here at the Hosp. her name is Tracy, she is a friend of Sarah Zilka, she was up here visiting Sarah a couple of months ago, and ended up delivering her baby here at St. Marys, and ended up keeping the baby here because of some complications. Well they also have been staying at the RMH and they get to go home tomorrow (they are from Chicago). So thanks Tracy for the darling pumpkins we found on our door today at the RMH:) Sam loved his too!!!!!

It sounded like the Waffel Feed was a very big success!!! Every one I have talked to today said that it was just awsome!!!!! I get choked up every time someone discribes how the caravan made its way to Franklin with the Fire Truck leading the way. How very very touching. I can only imagine how wonderful it would have been to see. I heard it was video taped, so we are looking foward to seeing it on film:) We sure wish we could have been there to visit with you all, it sounds like everyone enjoyed themselves and got to see & visit with many people they havn't seen for awhile. We will certainly enjoy watchin the video, but will always miss that we were not there.

I didn't want this webpage to turn into a Thank You message board, because I hope to Thank everyone personally some day. But I feel a need to Thank The Birch Coulee 4H club, Blair & Louise Anderson for all the hard work and effort it took to put this whole thing on. Rick Peterson, Daryl Thul, the Redwood Gazette employees with all of my friends there. KLGR Radio. The Franklin Lions, Our whole family and all of our friends, neighbors, that were involved in the benefit. Our wonderful Church Family, Sacred Heart Catholic Church. And everyone involved in anyway, the Caravan and all the donations!!!!!!!!!!!! We are just so humbled by this out pour of Care, It is an incredible feeling to know there is that much Love out there. Carl and our whole family are so appreciative, words cannot express the gratitude that we all feel. Please know that we have been touched and will never forget it. Thank You All

Love

Kelly


Saturday, September 28, 2002 at 04:14 PM (CDT)

Good Afternoon to everyone!!!

Carl is still trying to shake the 101. fever:( He has also developed some mouth sores (a side effect from one of the chemo drugs he had taken) He is getting a medication for that in his IV. Tom is over at the Hosp. with Carl, Auntie Jean and Cousin Robyn are there with them.

I am at the RMH with Sam, Chris and Randy Johnson brought a lunch for everyone here at the RMH. It was really good. Sam started coughing quite a bit, so we decided that we will keep him out of the Hosp. the rest of the weekend that he is here. Carl's white count is still at 100 so not much resistence to anything. Sam is enjoying Chris and Randy's company, he wanted to put together a Lego motorcycle, so he got the job done, with their help. It was quite a challenge, with many tiny pieces. But he loved the finished product!!!

Tom and Jean & Robyn will come back here (RMH) in a bit, then Chris, Randy & I will go over to the Hosp. to be with Carl for a shift. Tom said earlier that Carl did get a smile out once, he was watching a cartoon. And he was trying to change channels on the TV with the remote. So that is a good sign:) once his counts recover in a few days I expect Carl to be back to his normal busy self, running around and jumping on the bed again:)

Right about now, everyone back home is getting ready for the Waffel Feed. How I wish I could be there to see you all, and to Thank You all for everything you have done for our family. I would hug everyone of you, and tell you how much we appreciate your kindness and Love. Most importantly, I would Thank You for all of your Prayers. That is what has got us through this far. All our combined prayers are being heard!!!! I hope some day, to Thank each and every one of you personally!!!

Have a wonderful evening, and May God Bless

Love

Kelly


Friday, September 27, 2002 at 04:49 PM (CDT)

Good Evening to everyone

I wish Carl was feeling good and we could be there when everyone comes home tonight and tomorrow. I will miss you all this weekend. Bryan your little brother is a strong little guy, he reminds me alot of you. You went through alot when you were his age too, and he is a fighter just like you:) I love you very much, keep your faith strong and God will listen.

Tracy and Eric Fischer just stopped in, they brought Carl a pair of (Pooh) sunglasses!!! And they are off to Red Lobster for supper, and are bringing me back a shrimp supper!!! Carl and I both hit the jackpot tonight!!!
Thanks Tracy & Eric your terrific!!!!!

Carl still has his temp, they had delayed his red cell transfusion, for a dose of tylenol to kick in. The nurse was just in and his temp has gone down so his blood will be started just as soon as they bring it back up to him.

Tom and Sam should be arriving by 8:00 or so, It is too bad Carl will not enjoy playing with Sam, at least for a day or so til he perks up again. He will probably be just happy knowing that they are here:)

I hope you all have a Great evening!!! I also want to Thank You all so much for continuing to keep us in your thoughts and prayers. We gather our strength from knowing that you are all with us through our ups and downs.

Love to all

Kelly


Friday, September 27, 2002 at 11:56 AM (CDT)

Hello from St. Mary's Hospital

We came in about 7:30am, Carl's temp rose to 101.3, so he has already received one antibiotic, and is getting a second right now. He will be transfused soon with red cells and platelets. He is mostly sleeping, not complaining of the tummy ache as much as the first time we came back after counts went down. Maybe he will recover quicker this time. I feel better having him here knowing he's getting the IV for fluids, at the RMH he didn't drink much yesterday.

Our room No. here is 3 1-47

Our phone No. is 507-287-4637

Will check back later

Love

Kelly


Thursday, September 26, 2002 at 02:52 PM (CDT)

Good Thursday Afternoon

A not so good day here for Carl. We can sure notice the effects of his counts going down today. Not very active, he has been resting all day so far. He is also running a bit of a temp. I will be watching it close, and will need to phone the Dr. if it gets to 101. I am suspecting that it will before the night is over. He has not ate much due to the tummy being sore. Milk is tasting the best to him, so we keep offering that to him.

If we stay out of the Hospital til tomorrow, he will go to the clinic in the morning for blood work. Then to the pitc for the red cell & platelet transfusion. He may need the feeding tube again for a few days, since he is not eating very well, but the Dr. said we would waite til after the transfusion to decide on that.

Tom and Sam are coming tomorrow after work, Sydney will stay back home to be there for the Waffel Feed:) She is excited to be with her cousins:) Bryan will be heading to Franklin too, with Auntie Jill and the kids!!! My friend Chris Johnson,wanted to bring lunch for the whole RMH on Saturday!!! I told her that would be wonderful!!! It will be fun to see thier family again, and Jean & Robyn will be visiting us here then too. (Toms sister, and her daughter from Ill.) We will not be back home for Saturday, but will enjoy a very nice day here. If Carl should be in the Hosp. then, we should still be able to pull off the lunch here:) Great Idea Chris!!!

Have a very nice evening, will update if anything changes before tomorrow morning.

P.S. Added new pictures:)

Love

Kelly


Wednesday, September 25, 2002 at 04:28 PM (CDT)

Good Wednesday Afternoon!!

Just got back from the Clinic for a second day of the same thing. Carls white count has went down from yesterday. Not a problem, or disappointment, it just means that his counts had not bottomed out when he was checked yesterday. And we will not start the harvest til probably Monday or Tuesday. His counts will be checked again in the Clinic on Friday morning. Then he will go to the transfusion center at St. Mary's Hosp. for a transfusion of red cells, & platelets. The transfusion will be a help to him for the upcoming stem cell harvest. We go back to the clinic on Monday morning for another blood check, and back to the Clinic in the afternoon again, to re evaluate with the Dr.

The Dr is still very pleased with Carl, he told us that we may do some staging (re-test the ct, and bone scans) but may not do all because of that urine test that already shows us the progress. He said they will be done again eventually but it may not be necessary right now.

So we are just on hold, watching the counts go down, then back up, and will begin the stem cell harvest. I was so lucky to have Auntie Jill here for a couple of days, and today Jody and Melissa came to be with us for a couple of days. It is great to have some help in these clinic Dr.s appts, it gets kind of long sitting, then when the Dr. comes in to try to talk to you, Carl needs some distractions so you can talk and listen to what the Dr. is trying to tell you. Today Carl found a (reflex hammer) in one of the drawers, and was using it on all of our knees. Only he was swinging like he was a cobbler:)

We are settling in for the night, there is another supper being put on here at 6:00 then Melissa, Jody & I have our TV schedule all lined up for the night:)

Hope you all have a great evening!!!


God Bless

Kelly


Tuesday, September 24, 2002 at 05:27 PM (CDT)

Hello to everyone:)

A little late getting an update out today, we just got back from the Clinic. A very busy day it was, but with it brought much encouraging news, Carl's white count is already at 3600. We were going to waite til it got to 1000 to begin the stem cell harvest, also called a (fur-ee-sis) not sure how to spell it. So it appears that possibly the cancer is at such a low level that his bone marrow is already, making new white cells!!! We may start the harvest on Thursday. One of the tests that we did before returning to Rochester ( a urine test) shows a level of 18 it was a level of 136, just at diagnosis. So this result was even before this last round of chemo that he just finished!!!!

This type of cancer secretes a hormone which can be detected in the urine. So they use this as one of the tests to measure the level of the Neuroblastoma in his body. The Dr. said what this all means is that the treatments have shrunk the tumor way down, to almost nothing!!!!! What we know for now, that upcoming treatments will involve, is at least 3 or 4 more rounds of chemo the same as he has had. A posible surgery to remove the remains of the tumor. And then we will be looking at the stem cell transplant. All of this will depend on a week by week basis as to how Carl is tolerating everything.

So for the mostpart, we are very very pleased with what we are hearing on Carl's progress. Good results so far!!!!!

Keep the prayers coming, they are working:)

Love

Kelly


Monday, September 23, 2002 at 06:38 PM (CDT)

Thank You Daryl for a perfect story!!!!! That was so nice of you to add that to our web page, for those that do not get to read the Gazette, and some of the out of area family and friends. Very much Appreciated!!!!!

Carl and I just got back from a supper down stairs in the community dining room. Not sure who put the supper on, but it was Amazing!!! Not just the food, but to join with other families that are here too, with a story all of thier own. I met a famiy with a little three year old. They are here from Michigan, trying to find some answers to thier son's condition, he has been afflicted with brain damage from birth. If you can believe it, sometimes I can look at others and then look at my own situation, and think how very lucky we actully are.

Tom and I have decided that when we get all done here at the Ronald McDonald House with Carl, that we would like to come back here and do that same thing (bring and serve a meal). What a fantastic feeling that must be. We can relate knowing this from the other side, how very thankful we feel having this done for us!!!!! There is also a couple of other little bald headed kids that joined us for supper:)

Auntie Jill just got here, Thank God, Carl has been asking for her all day. I had been getting tired of threatening to call her and tell her she couldn't come if he didn't start behaving:) He has a new mission for us for tomorrow, besides his dr.s appt. at the clinic. We have to go to Walmart and find a (little hammer) Will let you know how we come out tomorrow:)

Have a nice evening!!!!

Love to you all!!!!!

Kelly


Monday, September 23, 2002 at 10:16 AM (CDT)

Hello this Monday morning:)

A good night for Carl, he always is such a good sleeper!!!
last night before we went to bed Carl remined me "do you have to flush my tubes" I would have forgot:( He sure is getting used to the routine with all of his cares. He even tolerates the gcsf shots pretty well.

Today we will just hang out and play. Auntie Jill will be coming later tonight, after her work. She said she will bring a pizza with when she comes:) One of the foods Carl seems to request the most is pizza. His appetite has been really good. He is snacking most of the time, this morning he has had two little boxes of cereal, plain chips, cheetos, and freetos. Some of wich is all over the carpet in our room. So we were just on our way to get the vaccume out of the storage room:) It reminds me of a email I recently received from Sarah Sullivan. It is a little story called "When you give a mom a muffin" It is so cute. I will have to print it out and post it out here on the web page, I think you would enjoy it too!!!!!

Will check back later:)

Love

Kelly


Sunday, September 22, 2002 at 02:12 PM (CDT)

Good afternoon!!!

We are enjoying another very nice day here at the RMH. We have Auntie Janet still here, Auntie Joy came with Cousins Kiri, and Cousin Nick!!!! We all had dinner together, it is fun to cook here, the kitchen is so big, lots of room, it is even big enough when alot of Robinson's get together.

Auntie Jill will be coming either tonight or tomorrow to spend a couple of days with us. It will be nice to have her here on Tuesday, when we have to go back to the clinic for Carl's Appt. Cousin's Melissa and Jody will be coming later in the week to stay with us also!!!

We added some new photos- check them out:)

Have a great day!!!

Love

Kelly


Saturday, September 21, 2002 at 08:00 PM (CDT)

Good Evening to all!!!!!

Having a great day here!!! The kids are in heaven running around and playing:) We all walked up to St.Mary's chapel for mass at 4:30. It felt just like home having family around and Rah Rah so close by to pass Carl off to:)

We went over to the Canadian Honker for supper. Carl enjoyed his supper, he was dipping his pickles in his orange pop:) Sam is learning some very impolite table manners, he can already rip out a pretty good belch!!! Uncle John asked if that is a Greer trait, I said no ours are better than that:)

So after we got back to the RMH, we took some family pictures in one of the living rooms. We took some with my camera, wich has a self timer on it. So it was quite a hoot, doing some photo's with all of us in it:)

The boys are in the tub right now, getting ready to settle down for the night. If that is possible this early, maybe we will get them ready to think about starting to settle down for the night:)

Well hope you all have a wonderful evening!!!!!

Love

Kelly


Saturday, September 21, 2002 at 01:36 PM (CDT)






HAPPY BIRTHDAY!!



MELISSA



WE LOVE YOU

TOM
KELLY
BRYAN
SYDNEY
SAMUEL
CARL


Saturday, September 21, 2002 at 12:29 PM (CDT)

Hello to everyone!!!!!

It was late when we finally got Carl settled down and to bed last night here at the RMH. We are on the third floor, and our room faces the parking lot, so Carl could see Auntie Janet up in our room when we were walking into the bld. He was so excited, he started to act about as silly as you can imagine. And that didn't stop for quite awhile:)

We are having a very nice day today. I took Syd and Bryan to Walmart with me earlier. Sydney got her hair trimmed at Cost Cutters there. It looks so nice!!! I think pictures will be coming up soon at school!!!

John and Sheila & the girls are here now, will update more later!!

Have a great day!!!

Love

Kelly


Friday, September 20, 2002 at 05:55 PM (CDT)

Hello this Friday evening!!!!!
Waiting for Carl's IV to be through with his last chemo drug for this round. It will run til about 9:45pm
We will be able to leave tonight and go over to our room at the RMH after. Carl as well as Tom and I have a bad case of Hospitalitis & are very excited to be able to get out!!

We will have to return to the clinic on Tuesday for his blood counts to be checked, otherwise as long as he is not getting sick or running a temp, we are able to stay in Rochester, on an outpatient basis.

Dad has his appt.s yesterday and today at the Clinic, he will be having the hip replacement in October. He will be coming back to Rochester again in a couple of weeks to have some tests and preliminary work done. We were hoping the surgery would be scheduled sooner, but I guess we have to go along with what they want to schedule.

Auntie Janet is on her way with Sydney and Sam!!! Carl will be happy to have them here this weekend!!! Bryan is also on his, he enjoys staying here with us too!!!

Have a Great night!!! Will update more tomorrow:)

Love

Kelly


Thursday, September 19, 2002 at 02:19 PM (CDT)

Good Afternoon!!!

Another remarkable day for Carl. He is feeling good, eating well, just crabby and bossy, one of the side effects from one of the nausea meds. But it is easier to deal with that than the other!!!

We just got back from the play room, they have several artist's here. Carl had a picture done for him, he wanted a bull dozer on it, kind of like Bob the builder!! What a cool picture. It is personalized with Carl's name in smoke, out of exhaust pipe on the dozer:)

Tom is at the clinic right now with my dad for his appt. He is having some x-rays done for his appt. tomorrow with the Dr. dad is needing a hip replacement, wich I can sure understand, he can hardly get around without alot of effort, and much pain. Please keep dad in your prayers along with Carl, he sure could use some right now too.

The other kids will be coming to the RMH tomorrow night with Auntie Janet, and I think Bryan will be coming for the weekend too. Carl should be feeling pretty good for a few days, his blood counts will start to go down again, but should not until Monday or Tuesday hopefully.

Have a nice day !!!


Wednesday, September 18, 2002 at 03:04 PM (CDT)

Just a quick update-

Our room number at the RMH is 302

The phone number there is 507-252-2184

I will be staying there tonight, my dad is coming into Rochester later this evening. He will be going to the clinic here on Thursday & Friday. So dad will be able to stay with us there during this time.

Carl is sleeping like a baby right now. Tom just brought him in a Pooh Balloon!! He will be surprised when he wakes up :)

I added some new pictures!!!!

Love

Kelly


Wednesday, September 18, 2002 at 12:37 PM (CDT)

Hello everyone!!!

Tom is over getting our stuff moved into the RMH!!! We were called this morning, and our room is ready for us!!

Carl had a great night! slept through both of the worst chemo drugs without any vomiting, and is still feeling good!! He has eaten pretty good and been out playing, just like yesterday!!! Carl has talked on the phone to Grandma Phyllis, Uncle Chuck, Auntie Jill & Auntie Judy, he is quite the little visitor today!!!

Keeping our fingers crossed that all continues this well!! I
truely believe that the "power of prayer" is getting through

Will update more later!!!

P.S. Tom couldn't find Pooh sunglasses, but found a cool pair of wire rimmed shades :)

Love

Kelly


Wednesday, September 18, 2002 at 07:37 AM (CDT)







HAPPY FIFTEENTH BIRTHDAY BRYAN



WE LOVE YOU !!!!!!!!!!!!!!!!!!!



MOM

DAD

SYDNEY

SAMUEL

CARL


Wednesday, September 18, 2002 at 04:46 AM (CDT)

Well Tom is not sleeping at all tonight, he was just out in the hall to tell the nurse Carl's IV was beeping, about scared her into next week. Earlier, he went out by the desk to announce it was beeping, and busted our nurse sitting there reading a chart nodding off. He was just promptly told to put on the light when it starts beeping so he doesn't have to walk out there:) Well im gonna try to go back to sleep now.

Love

Kelly


Tuesday, September 17, 2002 at 03:19 PM (CDT)

Good Afternoon!!!

Having a great day here with Carl. He has recovered from his morning surgery. He is back to his normal little busy self. We have been out on several walks, and to both play rooms. Everyone here is saying how good Carl looks. It is so hard to keep him quiet in bed when he is feeling so full of energy. But we know that will change, when the chemo starts and has a chance to take effect.

Tom is off to Walmart to take in some film, and to pick up a few groceries to put in the family room frig. He is also on a mission to find Carl a pair of sunglasses. Yesterday when we were outside alot, it was bright in Carl's eyes. We tried to find him a pair then, couldn't but promissed to later. Well he has not let us forget about that. He also would like them to be a Pooh pair of sunglasses. So we will see how Tom makes out at Walmart:)

Still no word yet on getting in the RMH for today. But the day is still young.

Will update more later!!!!!

Love

Kelly


Tuesday, September 17, 2002 at 10:32 AM (CDT)

Goodmorning from St. Marys Hospital

Carl had his hicman fixed this morning, it was just a little repair, didnt have to re-do it!!!!! He is back in his room now. We are just waiting for the Peds Oncologist Res. to come in and get orders going for the chemo to start.

Our room no here at the Hosp is 3-127

Our phone no in our room here is 507-287-4628

I have also updated it on the front page of the web Page
We are first in line at the RMH so we may have a room over there later today.

Will check back later!!!

Love

Kelly


Monday, September 16, 2002 at 07:45 PM (CDT)

Hello from Rochester

We have had quite a busy day at the clinic here. We needed to be there by 10:30, first we checked in at the RMH and we are 2 on the list. We parked there, then headed to the clinic for our appt. We first had to go do the lab work, then it was mostly milling around waisting time til our appt at 3:30 with the Dr. We did have fun though, we went into the skyway, window shopped and went in circles a few times. We took Carl to a video arcade place there, and he had fun playing a couple of games with Dad.

We finally got to our appt. Carl is doing great, his counts were great!!! We have one small little problem though :( nothing too major. His hicman tube has come loose, or pulled out. We thought it had on Friday night, when we were doing his site care, it appeared that it had pulled out from his chest some. After a call to Mayo that night, they said that it would be checked on Monday when we came in. This can happen, and is not too serious. So anyway tomorrow morning at 6:45 Carl will be admitted for surgery to fix, or redo his hicman. We will then be in for the start of the second round of chemo., that will start in the evening.

Tonight we are at the Fiksdal Motel, its right across the street from St. Mary's Hosp., If we are not in the RMH by tomorrow, we will just be staying in the Hosp.

I will update tomorrow with our Hosp room no. and phone no.
and If we are in the RMH, will get that room and phone no. out there too!!!!!

Have a good evening!!!

Love

Kelly


Monday, September 16, 2002 at 06:16 AM (CDT)

Goodmorning!!!!!

Just getting out the door for Rochester. We will update

later with our phone and room no.

Love

Kelly


Saturday, September 14, 2002 at 09:10 PM (CDT)

Good Evening!!!

Hope everyone had a nice day!!! We have had another very nice day here with our whole family together!!! It was a very good day at work for me today. We enjoyed a visit with Auntie Janet, and Melissa, Uncle Chuck, Uncle John & Auntie Sheila & the girls, this afternoon!!!

Tonight was the Annual Firemans Picnic. We decided to pack up all the kids & go for a little while. It was in Beaver Falls Park, since there was some campers at Birch Coulee this year. It was alot of fun to see everyone, it has been awhile since we have got out to any event!!! Carl was just a little doll, he was roasting marshmallows in the fire with uncle Chuck, then giving them to cousin Mandi along with a bunch of kisses :):):)

Tomorrow we will go to Church In Franklin, then work on our packing for Rochester that we have not got to yet :(
We will have supper in Morton at Grandma & Grandpa Robinsons'. We decided on Hamburgers on the grill, and Homemade french fries!! Melissa is staying for supper too,
Then Bryan will ride back to the cities with her.

Thanks to the two little elves that snuck into the house and did some spiffing up!!!!!

Love to you all!!!!!

Kelly


Friday, September 13, 2002 at 10:26 PM (CDT)

Hello this Friday night

Wow its almost 10:30 already!! Well a quick update on our day today. The boys and I visited our friends at the Gazette. It is always so nice to catch up with everyone there. Thanks girls for spoiling these two little boys even more!!! Barb - when we left there, we went over to pick Syd up from school. Carl had drawn an orange mustache on himself, with the marker he had :) Luckily we had a supply of baby wipes in the car, they clean up most anything!!! It was a fun visit!!!!!

We also stopped by Jeannie's daycare to visit with the little munchkins there!!! Carl's little girlfriend Josi Kodet, was in heaven being with Carl again. We had so much fun watching her doting over him :) We took some adorable pictures, cant wait to get them back now!!! The other kids were very excited to see Carl too!! Of course Sam & Sydney were right back home at Jeannie's too!! That was another very fun visit for us today :)

Not too much else new, Carl is doing and looking so good!!! I took him in to the clinic this afternoon for his weight check, and he is up to 29.2 !!!!! So the feeding tube can stay out for the weekend YEA!!!

Will be working tomorrow, then will get packing for our trip back to Rochester on Monday morning.

Until Tomorrow!!!

Love

Kelly



Friday, September 13, 2002 at 06:25 PM (CDT)

Hi this Friday evening!!!

Added new pictures !!!!!!

Leaving to go pick Bryan up in Glencoe!!!!!

Will update about our day later ...

Love

Kelly


Thursday, September 12, 2002 at 09:38 AM (CDT)

Good Morning!! This beautiful Morning!!

It was day two for Sam at Head Start, since he missed yesterday. He didn't want to go any more than on Tuesday:(
but I think it was a little easier. Carl came with to see Sam off, and we saw Gloria Greenslit there dropping off little Austin!! Gloria was excited to see us, and said that she thought Carl really looked good!!!!! I think he does, but it is so nice to hear others say that too!!!

We got back home, Carl had breakfast and right after wanted to pop popcorn and watch Shrek!!! So that is what he is doing right now!!! I am starting to think about and begin to get things ready to pack for our trip back to Rochester.
We will probably head back on Monday morning. Carl's first appt. in the clinic is at 10:00am.
I will be working on Saturday, when I was in the Post Office on Tuesday, I offered to work for Dave this Sat. I thought it would feel good to do someting kind of normal again!! So looking forward to that!!

I hope you all have a fantastic day!!!!!

Love

Kelly




Wednesday, September 11, 2002 at 07:57 PM (CDT)

Jenny?????

OK which Jenny is going to go second?????

Great Idea!!! I would consider it maybe,

After 2 or 3 Tea's (as in long Island) :) :) :)

Will have to see .....

Love

Kelly


Wednesday, September 11, 2002 at 02:48 PM (CDT)

Good afternoon!!!

Im spending this 9-11 anniversary with the boys here at home. I think back to a year ago, I remember being at work when I heard about the attack. I remember Sam, and how he was so interested in watching TV with all the news coverage of the planes hitting the towers, and wondering just what goes through a little guys mind? I reflect too, a year ago I would have never imagined being home with Carl in our present situation. How very blessed we all are to have each others Love and support, and to be together in this!!

This morning Carl had a Dr.s appt. at the Redwood Clinic. I kept Sam home from headstart today, he had been running a temp last night and still this morning, and had been complaining of a sore throat. I thought he may as well go in with Carl and be checked out too. Sam appears to just have a virus? the quick strep was negative. Carl is doing Great!!! His counts are good, his white count was very high, almost a concern, but then I mentioned that we are still giving him the shots, wich we realized was the reason. So we dont have to give him the shots at least til we go back to Rochester. Also I managed to pull his feeding tube out this morning, I was trying to change the tape on his face, and out it came :( Dr. Medrud phoned to Mayo to ask about the white counts and the tube (if it needed to be put back in) and the Dr there said we could leave it out. I need to bring him back for a weight check on Friday. If he maintains his weight, we can leave it out. Right now he weighs 28.8 He has been eating very well on his own, so hopefully we can get by without it for a bit.

We stopped over to see my Dad after our appt. Carl told Grandpa "I got a haircut" I think my dad felt kind of bad about that. He told Carl "It will grow back" We then went down to Morgan to take my mom some things she needed at the nursing home. We didnt stay very long, they were getting ready for dinner. The boys wanted Mcdonalds for thier dinner, so that is what they had. Carl ate all of his chicken mcnuggets!!! Sam appears to be feeling better too!!

Hope you all have a very nice evening!!!

Love

Kelly


Tuesday, September 10, 2002 at 09:10 PM (CDT)

Today was Sams first day of Head Start!!! It was anything

but a picture perfect first day of school. Alot of tears

and "I dont want to go to school" But just as I suspected

a huge smile on Sam's face when coming out the door after

school. Carl missed Sam, and wanted to go to school too!!



Carl and I visited Becky, Amy & Dave at the Morton Post

office this morning!! And went to Walmart too!!

Carl's favorite place to go!! Toms coworker Eric

& his new bride Tammy stopped by this evening!!!

It was alot of fun visiting with them!!!

Uncle Chuck was here too, and got to watch shrek with the

boys!!! They really enjoyed that!!!


Carl has been doing very well being home on his schedule

of tube feedings, and all his meds he is taking, he has

managed to get a little runny nose. Hopefully that will

improve too!!

Until Tomorrow

Love

Kelly


Monday, September 09, 2002 at 06:50 PM (CDT)

Good Evening to everyone!!!

Hope you all had a nice day!! Ours was very nice here. The boys had fun hanging out together, watching TV and playing with some of thier new puzzels and coloring books!! We got outside a couple of times. So worried about Carl getting sunburned. Cant put sunscreen on his face very well with the tape holding his tube in place. The boys got in the wagon and I pulled them down the driveway with the lawn tractor, to meet Sydney getting off the bus. She was very excited to see us!!! But later she said she was kind of embarrased when some kids on the bus said, "Theres your mom Sydney" Isnt that our job as a parent to embarrass the heck out of your kids??? I told her she should feel lucky to have her mom here to meet her at the bus!!! :)

Auntie Janet is here tonight, she stayed with Sydney and Carl so Tom & I could take Sam to his open house for Head Start. His first day will be tomorrow!!! Grandma Phyllis will come out in the morning so I can get Sam ready and take him to his first day of Head Start School. uhh ohh better get the camcorder charged up tonight!!!!!

Well we have already got some ideas going for next years "Relay for Life" Uncle Chuck and Kiri have come up with a really cool Idea here it is:

Carl's Commando's ... Attacking Cancer

or

Carl's Commando's ... Battling for a Cure

They thought we could all wear caumaphlage outfits and dress Carl up like a Commander??? Doesn't that sound cute!!

I have an idea of my own to go along with that, (it is for the guys hair doos) HEE Hee Heeee We could all get together before the Relay, have a little party and get out the clippers!!! :)

What do you all think????????

Well anyway, its fun to start thinking about it since we have double motivation to get involved - Grandma Phyllis and now Carl.

Have a Great evening!!! Will update more tomorrow!!!

Love

Kelly


Sunday, September 08, 2002 at 05:29 PM (CDT)

Hello this Sunday afternoon!!!

It was great to go to church this morning, and a pretty typical sunday in church. The usuall arguing over who was going to sit by Mom, Carl had to be hauled out once because he was yelling too loud. And the familiar "Wheres Rah Rah"
It sure felt like we were home again!!!

We had dinner at Grandma & Grandpa Robinson's. It was delicious, Ham & mashed potatos with Ham gravy, everyones favorite dinner!!! Sorry you missed it Jody:( HE HEE HEE just kidding. We took some pictures of the kids next to one of Uncle Chuck's huge pumpkins in the garden!! will have to get one of those out there for you to see!! Carl is calling Uncle Chuck right now on his phone that Auntie Janet got him last week!!

We just added different photos today too, you will have to check them out. We will have to see if we have better luck getting our film developed back home here. Does anyone know if Walmart in Redwood, or Tersteegs puts your photos on a floppy???

Wishing everyone a very nice evening!!!

Love

Kelly



Saturday, September 07, 2002 at 07:52 PM (CDT)

Good evening to all
Our first day home has been very nice!!! The boys are right back to being brothers, fighting as they always did!!
Grandma and Grandpa Robinson came by this morning for a visit. Uncle Chuck, Uncle John, Auntie Sheila & the girls also came by. Amy Weiss, stopped by to say hi this afternoon, (I work with Amy at the Morton Post Office) I told Amy, Carl & I would stop by the Post Office some morning this week to say Hi to her, Becky & Dave.

It is so nice to be back home, this week is going to go too fast though. Some of the flowers I had planted this Spring are finally blooming, The puppy is sure getting big! the little kittens are growing, And Daisy heaven forbid looks like she is (pregnant) If anyone would like a real interesting looking puppy in a couple of months, let us know. But it is good to be back on the Farm!!!!!

Auntie Janet came out this afternoon also, She played with the boys and got them outside, while Syd and I took a little nap together. Uncle Clair & Auntie Joy are here this evening! They brought Carl a most adorable cap, it says "Car Car" on the front. I suppose he will be wearing caps alot now. He did keep his hair til this morning, it was starting to fall out in clumps. So I gave him a real short haircut. I used a #1 clipper comb. Carl doesnt look too strange, since both Sam and Carl usually keep pretty short hair cuts anyway. We joked about shaving Sam and Tomma too!!!

We are planning on Church in the morning, we are excited to see all our friends there that have been praying so hard for us!!!

Have a wonderful evening!!!

Love

Kelly


Friday, September 06, 2002 at 10:15 PM (CDT)

Hello from Franklin,
Just getting settled in after the ride home and the big move. I mentioned last night about Carl wanting to bring everything home. Well we did. We were unable to keep our room for a week while we went back home, so we had to pack up and check out of the RMH. We will have to get back on the waiting list at the end of next week and start all over again getting in.

Rice Home Health brought Carls pump, and tube feeding supplies tonight. We have him all set up in bed for the night. The tube feeding will run for 12 hours each night and be off during the day.

Carl was so excited to come home. He kept asking if he could sleep in his crib tonight. He was also excited to be back with Sydney and Sam tonight.

It feels so good to be back home, we have been given the ok to be away from Rochester til Sept 16th. That is when we will be starting the second round of chemo. Until then we will just enjoy every second of every minute of every hour of every day being together back home!!!!!

Until Tomorrow,

Love

Kelly




Thursday, September 05, 2002 at 09:29 PM (CDT)

Good evening to all!!!

Carl and I just got done watching shrek!! We went down to the play room earlier for Bingo. The child life staff do such a fantastic job to keep fun activities going all the time for the kids here. If a child cannot come to the play room to play Bingo, they can watch it on one of the TV stations in thier room.

We are getting geared up to maybe going home tomorrow!!! The Dr told me today that it could be later in the day or possibly evening? My brother in law Terry is bringing thier son Blake down to the clinic for an appt. later in the day, so if it all works on schedule, We may be able to catch a ride back home with them. Then Tom would not have to make the trip here. If it turns out to be too late, Tom will just come here, and we will stay the night and head back Sat. morning.

When ever, and how ever we get there, it will certainly be an exciting homecoming!!! Carl has been asking, "can I bring this home?" "can I bring that home?" If we brought everything home, we would need a truck. It is amazing how much you can accumulate in three weeks.

looking forward to the Drs visit in the morning!!! It is such a welcome change to keep hearing good news each day!!

Happy Friday to everybody!!! Will catch up with you then!!!

Love

Kelly




Thursday, September 05, 2002 at 10:07 AM (CDT)

Good Morning to everyone!

We had a very good night last night, and Carl is having a fantastic morning. He has smiled at least a dozen times!! He walked down to the play room a little while ago. We played with goop (this playdough stuff they make, its really cool) He painted a picture! Played with cars, and lincoln logs!!!!! What a difference from yesterday!!!!

Carl still has the feeding tube, but that will be decreased so that he starts to eat meals on his own. It is so fun to hear his little voice again!!! He normally is such a chatter box, I didnt realize how much I missed him talking!!! Carl's Uncle Rick calls Sam "Pete" and Carl "Repeat"

The Dr was in last night, He said Carls white count is going up!!! And that we should feel very encouraged by that!! It was 600 yesterday, have not heard the new count today but hoping it is higher yet!!! He also said that if his counts keep getting better and he improves as he has been, that we may possibly be able to get a couple day pass, (to come home for a couple of days) but if not that, we should be able to go back to the RMH!!! He said Carl would need to get Transfused with platelets and red blood cells to boost him up before we leave. What very good news!!!

I asked about his second round of chemo? It was supposed to start next Friday Sept. 12th? The Dr. said that Carls counts will need to completely recover first, so we dont know for sure when the second round will start.

So everything is going very well down here!! Back home I think Tom is doing a Great job of holding down the fort!!
Sam has been going to Grandmas and will be starting Head Start next week. Syd is doing good in school so far, she told me last night that she accidently went into Mrs Bloedows class by mistake:) I asked Mrs Bloedow to give Syd a hug for me if she sees her today!!! Bryan is enjoying school too, he said he will be starting Soccer next week!!

I have to go, The Dr just came in with GREAT NEWS Carls white count is up to 2100 !!!!!!!!!!!!!!!!!!!!!!!!!!!!
We were given a pass to leave to go to the RMH for a few hours, so we will get ready to go out. Will need to get back by 5:00 to hook up for the tube feeding.

Will update later!!!

P.S. The Dr. also said we may be able to go home for a week!!! Will find out tomorrow how all the counts turnout!!

Soooo Happy, all our prayers are working!!!

Love Kelly




Wednesday, September 04, 2002 at 01:10 PM (CDT)

Good Afternoon!
Our day is going much better than yesterday! Less tummy pains, a little more active, Carl still needs to be up and playing, and looking like he is feeling better before we will be discharged. I would be suprised if we are back to the RMH before the weekend.

Auntie Jill is watching a Tigger movie with Carl right now, and I am up in the Library using thier computer. I also need to check if they have the Movie 'Shreck" It is one of Carl's favorites, he especially likes the part in the beginning where Shreck goes in the muddy swamp to take a bath and makes (bubbles in his bath) We have that movie at home so Tomma try to remember to bring it this time:)

I wanted to share an email that we receive from one of our wonderful neighbors Linda Radermacher- Some of you may not have heard, but Toms horse "Meg" died last week, we believe it to have been from the West Nile Disease.

This is what Linda emailed to us-

This Story reminded me of Carl and Tom's Horse.

Subject: Traveling Angels

Two traveling angels stopped to spend the night in the home of a wealthy family. The family was rude and refused to let the angels stay in the mansion's guest room. As they made their bed on the hard floor, the older angel saw a hole in the wall and repaired it. When the younger angel asked why, the older angel replied, "Things aren't always what they seem."

The next night the pair came to rest at the house of a very poor, but very hospitable farmer and his wife. After sharing what little food they had the couple let the angels sleep in their bed where they could have a good night's rest.

When the sun came up the next morning the angels found the farmer and his wife in tears. Their only cow, whose milk had been their sole income, lay dead in the field.

The younger angel was infuriated and asked the older angel how could you have let this happen? The first man had everything, yet you helped him, she accused. The second family had little but was willing to share everything, and you let the cow die.

"Things aren't always what they seem," the older angel replied. "When we stayed in the basement of the mansion, I noticed there was gold stored in that hole in the wall. Since the owner was so obsessed with greed and unwilling to share his good fortune, I sealed the wall so he wouldn't find it."

"Then last night as we slept in the farmers bed, the angel of death came for his wife. I gave him the cow instead. Things aren't always what they seem."

Sometimes that is exactly what happens when things don't turn out the way they should. If you have faith, you just need to trust that every out come is always to your advantage. You just might not know it until some time later...

Some people come into our lives and quickly go..

Some people become friends and stay awhile...

Leaving beautiful footprints on our hearts...

And we are never quite the same because we have made a good friend!!

Yesterday is history.
Tomorrow a mystery.
Today is a gift.
That's why it's called the present!

I think this is special...live and savor every moment...This is not a dress rehearsal!

Thanks Linda for this email!!! I think about it every day now, I have always said, things happen for a reason, we can't always see it right now, but there is always a reason. I do believe God has a plan going here!!!

Love to All

Kelly


Tuesday, September 03, 2002 at 10:10 PM (CDT)

Well its pretty late, but I finally was able to get online!!
Something goofy is going on with the Hosp. server? Was not able to get logged on there. I am back at the RMH, Auntie Jill is staying at St.Marys with Carl tonight. After a bit of tossing it around, we decided on that arrangement. I dont know who will get less sleep, Jill being with Carl, or me being away from Carl.

Oh by the way the "B" and the "R" of the Jenny Birthday dual is Bloedow, and Robinson!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Happy Birthday to you Both

Well like Tom said, Carl is still not himself, the Dr claims this is from the low white count. It should start to go back up hopefully by the end of the week. Along with all the cells being killed, the good bacteria in the stomach and intestines are also killed, wich is causing alot of his discomfort. This should resolve itself with the counts coming back up. They gave him a medication that reduces the stomach acids, and Morphine for the pain episodes, wich he has only had once this evening.

The Dr also said we can leave the hospital as soon as Carl perks up, is playing and eating. Even if he is eating, we may still go home (The RMH) on the tube feeding. Tonight they increased that to double what it was started at.

I will be anxious to get back to the Hosp to see how the little guy was for Auntie Jill through the night, I sure hope he leaves his tube alone tonight!!!

I have to share a little story with you, While I was out of the room today, Auntie Jill picked up a "Tigger" stuffed animal that Bob and Bryan had brought for Carl. She didnt know that it talked. When you push on belly he starts talking, he says "Hey there old buddy ol chum" Well Tigger started talking and about scared the pants off of Auntie Jill. (Carl got a big smile on his face) This is the first smile for about 4 days!!!!! I wish I could have seen it. I told Jill maybe we will have to put on a comedy routine for him later, to get him to smile!!!!

What power the smile of a little sick guy can have on one!!!

Will get back on tomorrow,

Love

Kelly





Tuesday, September 03, 2002 at 09:07 PM (CDT)

Hello everybody
Kelly called and can't get online so she told me to put a few words out here. HAPPY BIRTHDAY Jenny B & Belated HAPPY BIRTHDAY Jenny R .She also said Carl got to the playroom for a bit.But is just taking sips of milk&juice.But has the feeding tube in to keep him going.So we hope the computer bug goes away and she can get back online to keep us up to date.


Thanks to all
for everything


Tom,Syd,Sam


Tuesday, September 03, 2002 at 02:22 PM (CDT)

hello to everyone this Tuesday afternoon!!!
We are blessed to have Auntie Jill with us here today, she is staying until tomorrow. I was able to go back over to the RMH and take a break to shower and change. It is a nice little walk back and forth.

Carl is sleeping, still not up and at em. He had pulled his feeding tube out during the night, so at about 6:00am the nurses came in to take him and put it back in again. The hardest thing is that he doesnt understand why we are doing all of these terrible things to him.

He has still been complaining of a tummy ache off and on.
One of the nurses was in the room and saw how he was acting when he was in one of these pain episodes. She talked to the Dr. and he came in to check on him. They are ordering some stronger pain meds.

The nurse is in here now, we are going to do his site care, we will update more later.

Love

Kelly


Monday, September 02, 2002 at 06:14 PM (CDT)

Hello this Monday evening!
Tom & the kids and Auntie Janet have left the Hosp to walk back over to the RMH. Red Lobster here in Rochester is hosting a supper back there for the residents. I think they were going to eat supper there before heading back home. Sam didnt want to leave tonight he wanted to stay with momma. He enjoys being here with Carl, he eats all of Carls food that he doesnt want (wich is alot lately) Sam is going to gain all the weight that Carl has lost.

A little while ago, Carl had the feeding tube put in. It doesnt look as bad as I thought. So far he has just been resting, he has touched it a couple of times but not tried to pull it out. He is pretty good about his Hicman tubes so I think he will leave this one alone too. The nurse should be in soon to do a feeding. They give him this formula in a can (pedia sure). He has not complained of his tummy hurting for a few hours, we were able to get him to drink some milk. I think that helped, and he should feel so much better after he gets a full tummy.

Hope you enjoy your evening!!! Will update tomorrow!!!

Love

Kelly


Monday, September 02, 2002 at 11:05 AM (CDT)

Good Morning from St Marys Hospital
Carl is feeling pretty lousy, he has been complaining of a tummy ache for a couple of days. His temp is back to normal, and the vomiting stopped, but he still has this tummy ache. He wants to eat but when he takes a bite, his tummy hurts worse. The Dr says this is from the white count being so low. It just has to run its course, It should improve by tomorrow.

Carl will be getting a transfusion of platelets again today, and will be getting a tube put in for feeding. This may also help the sore tummy when he gets some nourishment. He will still be able to eat food along with this tube feeding. They may do the tube feeding at night, and let him eat regular meals during the day.

Tom, the kids & Janet will go back home later today. Carl and I will be hanging out here in the Hosp. for another day or two. Auntie Jill is going to come on Tues and stay with us til Wednesday.

Sydney will be starting her first day of fourth grade tomorrow!!! I will miss being there for her first morning of the new school year. I usually take pictures, and get out the video recorder and film a little bit. Syd was so embarrased her first day of kindergarden. I followed her on the bus with the camera. When Bryan started preschool, he was only three, he rode a bus to school. I filmed him getting on the bus, then I drove over to school and filmed him getting off the bus at school. I Still get choked up when the bus comes the first day of school.

We did get the pictures straighted around on the disc again, I will try to get those added today!!!

Have a nice day!

Love

Kelly


Sunday, September 01, 2002 at 04:16 PM (CDT)

Good afternoon!
Carl has received his transfusion, and antibiotic, the nurse just came in with another antibiotic to push into his IV line. Not a lot of energy today, is complaining alot of his tummy hurting. We ordered him chicken nuggets and Mac & Cheese on his supper tray, so we will see if that perks him up at all.

Tom is off to Walmart. We brought in another roll of film last night, waited around for an hour, requested they be put on disc too, so we could use them for our web page. You can only guess what happened there. Yes they were done upside down, just like the last roll we fooled around with.
Cant wait to hear the story, if they fixed the disc, or if they will have to redo it again. So check back later we may have some new pictures to post!!!!!

Until Later,

Love

Kelly


Sunday, September 01, 2002 at 12:38 PM (CDT)

Just got back from the Hosp. wanted to pack up a few things and head back over there. We ended up taking Carl in thismorning about 5:00am. I took his temp about 4:00 and it was 101.3 He has been admitted, is getting antibiotics, and right now is getting a transfusion with red blood cells. His counts have not changed from Friday.

We didnt want to be admitted again, but he is getting what he needs to get him strong and on his way again. They dont look at this as a set back, but as expected, due to the course of treatment he is on. He sould be more perky by this evening and hopefully up eating and playing again!!

The Dr expressed that with his intake being so low, and the weight loss, that he will most likely be getting a tube for feeding tomorrow morning. It is not as bad as it sounds or looks. It goes down through his nose and into his tummy. It will stay in for a period of time, and give him the nourishment he needs. I will be doing the feedings too when we go back to the RMH.

We have our name down on the list for a lap top over at the Hosp, so hopefully we will get one real soon. I will continue to update on Carl while we are in the Hosp. Not sure how long we will be there, were thinking just a day or two. Janet is staying with the other kids at the RMH, and will be here til Monday. You can reach her at our room no there, or If you try to get Tom or I our phone no at the Hosp is 507-287-4551 We are in room 3-101

Bryan would like this room it has a built in Nintendo, I think it is our little friend Eric Fischer's favorite room!!

Have a Nice day!! Will check back later

Love

Kelly


Saturday, August 31, 2002 at 02:41 PM (CDT)

We are back from the transfusion, it went very well. Carl is holding his temp down too!!! He has not ate a thing yet today, we keep bugging him, do you want this, do you want that, and he just says "NO NUSSING" so we will have to keep working on that the rest of the day. Dont want him to loose too much more weight.

Sydney and Sam are enjoying thier stay here with us!! Syd keeps checking out movies and going down to one of the kids playrooms to watch them. Sam is running back in forth between there and our room. I think he likes the freedom of coming and going.

So we are still at the RMH will check back later, we are just hoping for only improvement from here for the rest of the weekend!!!

Love to All

Kelly


Saturday, August 31, 2002 at 09:03 AM (CDT)

Good morning!
Carl is still sleeping, he slept well through the night. I woke up at about 1:00am and took his temp. it was 100.0
I phoned the Dr on call. He said to waite til morning and check, also Carl has an appt. for a platelet transfusion at 11:00am in the ITC. He will be checked then and they will
decide if he should be admitted then.

On tues, Eric Fischer visited Carl at the Hosp before we were discharged. He brought Carl a Tractor Windchime for his IV pole. Eric was given a windchime for his IV pole and it has a meaning behind it. (to remove negative energy and to bring positive carma) So we too will be bringing Carls windchime to the Hosp everytime he has a IV. Eric was the only little boy with one. Now Carl has a windchime!

We enjoyed our visit that day with Eric and Tracy, Carl was not feeling very well at the time, but was cheered up with a Really cool blue truck that Eric brought for him!!! You push a button down on the top of it, and it sails across the room. Carl also received some fun books, & crayons too!!! If we wind up over at St Marys later we may have to stop by and say Hi to Eric!!!

Janet is still with us here, she is going to stay with Sam and Sydney while we go for Carls appt. at the ITC. She may stay longer if needed.

Will update more later, have a nice day!!!!!

Love

Kelly


Friday, August 30, 2002 at 08:02 PM (CDT)

It is Friday evening and all is well! I think
Well we just got done with supper, Tom and the kids got here this afternoon. We made Toms favorite, Hamburger gravy over mashed potatoes, Fresh garden tomatos, and sweet corn.
He brought alot of sweet corn, so we shared with the oter families. There is an Amish family staying in one of the other rooms on our same floor. They really enjoyed the corn, and shared some of thier butter with us!!! We have such a warm family feeling here. It is so wonderful!!!

Today we had an appt. at the infusion therapy center in the AM for a blood draw, tube flush, weight, and blood pressure.
Then had our appt. at the clinic at 1:00 It was a super busy day there today, needless to say it was after 5:00 when we finally got out of there. I hope it isnt that way every time :(

Carls blood counts are very low. His white count is 0.2 which is extreamly low. He also had a low grade fever when we were first there. It was back to normal when we left.
The Dr.s expected this to happen, as it usually does about this time after chemo. It will be a couple of days before
his counts come back up. The fever however is a small concern. If it gets up to 100, we need to call the Dr on call, and he will be admitted to the Hosp. again to have an IV for Antibiotics.

We are trying to hold off on visitors for the weekend. At least until his counts are normal again. His immune system is very weak when the counts are this low. So we thought it was best to keep him isolated during this low period. And this probably will happen so many days after each round of chemo. We are keeping our fingers crossed that we can fair the weekend without a Hosp. admission.

We have received tons of cards from friends, neighbors and relatives, along with all of your very caring messages on this web page!!! Thank you over and over, it means so much to know that we are thought about and cared about so much!!!

We will keep you posted on what happens this weekend with Carls situation. Hope you all have a Great Holiday Weekend before the back to school rush starts!!

Love
Kelly


Thursday, August 29, 2002 at 08:14 PM (CDT)

It is Thursday evening, Carl is just settleing down after having his shot, and a dose of Bactrim. Out of all the oral meds he is taking, we decided the Bactrim is making him sick everytime he takes it. I will ask at the Clinic tomorrow if we can replace it with another antibiotic.

At supper tonight, Carl ate very well, he really enjoyed the tuna hotdish we made. He did get a bit sick during supper too, and This one is for Kathrine (our little pickle niece) as Carl was gagging, he was asking for another pickle. Janet and I just looked at each other, and Janet said, "oh well, they said give him whatever he wants" So he managed to eat a few more pickles, and another helping of hotdish.

Well we have managed to get a few laughs out of the situation each day! Last night when I was out in the kitchen taking a pizza out of the oven, a little girl was out there too with her mom. The little girl came over and gave Carl a huge shove. He went flying backwards and fell on his rump. And of course started crying. Just before this happened the little girls mom was telling me how she had got kicked out of daycare because she was too aggressive with the other kids there, (she said they were all boys) I thought to my self, (I can see why lady) anyway now Carl is telling everyone that he talks to about the little girl. He says "a little gouwl pushed me down"
then he says "she is a naughty gouwl" It is so cute, that is the first thing he tells people on the phone.

Well I think I will try to get Carl tucked in for the night!
I will let you know how our two appts. go tomorrow, until then have a nice evening, and a Great Friday!!!

Love
Kelly


Thursday, August 29, 2002 at 12:34 PM (CDT)

Hello this Thursday Afternoon,
We got back from the Infusion Therapy Center a little bit ago. That went very well. Just had to flush Carls lines, get a blood pressure and weight. Carl has lost a little over two pounds since this whole thing started.

He wanted Mcdonals for lunch, but didnt eat much. He is still getting sick off and on. Auntie Janet just said he had a half of a candy bar! We thought we would try a hotdish on him tonight!! All the kids like hotdish.

Bryan and I are going to church later at 4:30. Tom said the mass was just beautiful on Sunday. The music and singing were very nice!!

Carl has been enjoying Auntie Janet here, she has been such a great help to us. We are so blessed to have such a support system.

To Jenny, I know you will be just fine when you see Syd. I have been praying for you and I will pray for you at church when I go!! You are a wonderful person, we love you very much!! You mean the world to Sydney Woo. Remember you have been a gift to us, from God.

Tomma give us a call tonight! We Love you and Miss you!!

Love TO All

Kelly




Wednesday, August 28, 2002 at 03:52 PM (CDT)

Good Afternoon to everyone!
We are now at the Ronald Mcdonal House officially! I will update the address and phone no. on the bottom of the web page for The RMH.

We had a eventful night last night. About 1:ooam our smoke detector in our room started to go off. We both shot out of bed, to find no smoke, and no fire, just faulty smoke detector. So Tom went out in the hall, and around the building to scout it out.

I got Carl out of the room, it was so ear piercing. Then Tom decided to phone the Fire Dept. He told them about the situation, and that it wasnt an emergency. We didnt want them to come flying over here with thier sirens and flashing lights. So about five minutes later two Fire trucks came flying over here with thier sirens and flashing lights. They were not able to reset it, but removed the screaching alarm in our room so we could go back to bed.

So anyway there always has to be some excitement going on with us. Today has been very nice, Grandma & Auntie Janet have been here since noon. We were invited to a Lunch down in one of the dining rooms. They were serving tacos, and ice cream sundaes! So we all had lunch there. Tom and I then ran to walmart to get some groceries.

Tom and Grandma are leaving now to go meet Jill to pick up
Sydney & Sam. They will be heading back home til Friday.
Bryan will be coming down later to stay for a couple of days. It feels very homey here, I think Carl is settling in very nicely.

Thank you to everyone for your continued support, Love and Prayers, that is what gets us through each day!!!

All or Love
Kelly


Tuesday, August 27, 2002 at 11:06 PM (CDT)

Good Evening to everyone
It is late, we didn't finish with Carl's transfusion til about 9:00pm. But we are here now (At the Ronald Mcdonald House) and Carl is tucked in for the night. I think he was confused about coming here, he thought we were going home. He will be suprised tomorrow when he wakes up.

We have an Appt. at the infusion therapy center about 11:30 in the morning. Then our day will be pretty much open to play and have fun. Grandma and Auntie Janet will come for a visit!!

Until Tomorrow,

Love Kelly


Tuesday, August 27, 2002 at 01:46 PM (CDT)

Posted new photos!


Tuesday, August 27, 2002 at 12:32 PM (CDT)

Hi to everyone!
Carl is eating his lunch right now, and doing a good job at it. Tom just gave him a spoon full of strawberry ice cream and he said "That is very good!" It is nice to see him eating again! He wants to go to Mcdonals for supper again.

We will be staying for a little while yet today, He is scheduled for a transfusion at about 3:00. Not sure how long that will take. But we will be leaving after we are all done with that.

So glad to hear the girls did so well at the fair with the "Share the fun" it was good to hear from you Syd, we miss you very much!! Will be looking foward to you visiting on Friday.

We think we have our schedule worked out for the rest of the week with appointments. Carl will be seen in the Infusion Therapy Center on Wed, Thurs and FRI, it is on the 5th floor of St Marys here, for his Site care, injections, and heperin flushes, also Friday he has a dose of a Chemo drug called Vincristine, it is administerd as a push in the IV. so it will be a quick one. We will also go to the Clinic on Friday for more follow up.

Auntie Janet will be coming on Wednesday to stay with us, Grandma Phyllis will come along and go back with Tom when he leaves here. Tom will be home for a couple of days, he will be able to take Syd to her open house at school on Thursday night. Then Tom will come back here Friday with Syd, and Sam. Bryan called last night and wants to come back to see Carl too. He will be coming Wednesday night and stay til Friday. I think I have that all straight!!

Well you all have a great day!!

Love Kelly




Monday, August 26, 2002 at 08:45 PM (CDT)

Just got back from our outing. We got a late start today, the nurse came by and had to hook Carl back up to the Iv for a 45 minute medication. Then we had to waite til 6:00 as he was due for another couple of meds.

We took almost all of our things over to our room at the Ronald Mcdonald House. They are so nice there. They gave Carl a really cute quilt. Our room is in a great location, close to the kitchen, and right outside the door is the computers, so I can easily get on and keep everyone updated from there. Our room no is 211 and our phone no will be 507-252-2181

We are not sure what time we will be discharged, the Dr thought probably later in the day. So still try our room phone no at St Marys if you are calling. I will let you know when we are definately moved over there.

We went to Mcdonalds for supper, Carl ate pretty good! We then got to Walmart to pick up a few things we needed. Jill and the kids were with us, then left from there. They are taking Sam home with them too. They will meet up with Joy and Clair later tonight and get Sydney from them. The kids (Sydney, Sarah, and Kathryn) performed a number tonight at the State fair. It is called "Share the fun" Thier 4H club "Birch Coulee" won a State Fair trip for this! So excited to hear how they did.

Looking so foward to getting over to the Ronald Mcdonald House!!

Love

Kelly





Monday, August 26, 2002 at 03:28 PM (CDT)

Good News, The Ronald Mcdonald House just phoned! Our name has come up on the list! We can start moving in after 4:30 today.

Will check back later!

Kelly


Monday, August 26, 2002 at 12:15 PM (CDT)

Thought I would get back on here to update since thismorning. Carl has his iv off now, has been ok'ed to be discharded tomorrow. He even was given a pass to leave the Hospital today!! He heard me talking about Walmart, so he wants to go to Walmart. We may take him out to get a bite to eat, maybe Mcdonalds.

Auntie Jill, Kiri, & Nick are coming for a visit thisafternoon, so we will waite for them, and then go on our outing! We will also go to check out the infusion therapy center here at St. Marys, that is where we will be going if he needs transfusions, and maybe some site care of his hicman.

Looking foward to a fun day!!

Will catch up later,

Love Kelly









Monday, August 26, 2002 at 04:38 AM (CDT)

Good moring everybody
Couldn't sleep so I thought I would put a note out here.It has been so comforting to here all of the kind words.That have been said.I find Kelly & myself looking at carl's site when we need a pick me up and there's been alot of that to be done around here.We read them over & over agian.It's so nice that we can have this laptop in our room .When we feel we need a boost we grab the laptop & read your words again.So thanks for all of your support through is difficult time.

With deep appreciation to all

Tom


Sunday, August 25, 2002 at 06:00 PM (CDT)

Hello to everyone
we have had a very nice day. It started out somewhat like yesterday, Carl was a bit pukey, didnt want to eat or drink anything, and very grumpy.

Jeannie and Mike came to visit, (the kids daycare mom) also Uncle Clair and Auntie Joy!!!! Much of the same for quite awhile, then this little boy came to life.

Uncle John Auntie Sheila, Kathryn & Rah Rah came in the door. You should have seen that little guys face light up. He was pretty excited they were here, especially Rah Rah!! He got up, played with toys, squabled with Sam, even ate a little bit and had some pop!!! He even told me to
"shut up" Its hard to get angry at him when he is sick.

We went to the playroom for a bit, several times! Then back to the room. Tom has not seen the Ronald Mcdonald House yet so the whole crew went for a walk over there. I stayed back with Carl, we figured he needed a rest after such a huge burst of energy!! So he then pitched a total fit when everyone left. He screamed for about 10 minutes that he wanted to go for a walk. He finally settled down and is now sleeping.

It is amazing how you can go from one extream to another. The nurse said that there is about a 300% inprovment from yesterday. It is just so nice to see him happy and active again. It should be even better tomorrow. This last bag of chemo will be done about 4:00am Monday morning. Then we will see what happens from there with being able to leave the Hosp.

Tonight Tom and I have to learn how to do site care (take care of his hicman iv line) then one of us will need to do it on him tomorrow. The dressings have to be removed, the area around the tube cleaned and then new dressings put on. The worse part of the whole job is keeping him settled down. The dressing is covered by a clear bandage that is real sticky. So removing it is the hardest part of the procedure. We were told it helps to give him a bath just before we do site care, then it is easier to peel off the adhesive bandage.

We also have to learn to give an injection. We will be giving him an injection in the leg, once a day. This wont be as difficult ( I hope) It should be a quick thing to do.

Until Tomorrow:)
Have a Great Evening!!
Love Kelly


Sunday, August 25, 2002 at 07:01 AM (CDT)

A Restful night. Both the boys are still sleeping. Before they went to sleep last night, sam was playing with some toys in bed, and talking about them. Carl would call back to him, "Thats my car" "Thats my book" So we think it is good to have Sam here, it reminds Carl what his role as a kid is. To fight for everything!!!

Yesterday I forgot to mention, and it was probably the most important thing i forgot. Uncle chuck was here too! And managed to get the one and only smile out of Carl since this whole round of treatment has started.

Tom is down taking a shower right now, he is going to go to church here at 8:30. What a beautiful church this is, we have been there a few times to pray, and sign Carl's name on the prayer list, but have not had the chance to catch a mass yet. Hope you all have a great day, we will get back here later and share our day!

All our Love,

Kelly

Love Kelly


Saturday, August 24, 2002 at 08:54 PM (CDT)

Carl has had a quiet sleepy day. Not too much energy, he tried to get up a couple of times, then had to lay down again. So he mostly rested, watched Bryan play nintendo, and listened to his family visit.

Grandma, Aunt Janet, Sam of course, Uncle Dave, Auntie Jean
Leslie & Sarah stopped, and Randy & Chris Johnson all came to visit today. We were so glad to get the picture deal figured out!

Randy & Chris stayed with Carl so we could go get some supper. So Uncle Dave Aunt Jean, Bryan (oh ya Bryan has been here since thursday too) Sam, Tom & I set out to get on the elevator to go downstairs. The door of the elevator opened, and Sam ran on, then the doors closed right away and Sam went for a ride to another floor. The elevator went up to 4, and the guy that was on with him just sent him back down to 3. We could hear him screaming behind the door after it went up. Tom jumped on another one to try to go up and find him. Well we all met up on the 3rd floor again. Sam held my hand all the way over to the reastraunt.

Well Sam is spending the night tonight and is getting settled in for the night. He had a fun day here playing with Carl's new toys, and He also got some of his own. Sam was anxious to ride in Carl's red car, Uncle Dave & Aunt Jean were busy pushing him around for quite awhile. We are looking foward to a better day tomorrow with Carl. Maybe he will feel more up to getting up and playing with Sam!!

Have a great Sunday will update more tomorrow.

Love Kelly




Saturday, August 24, 2002 at 04:48 PM (CDT)

WE HAVE PICTURES!!!!!!!!!!!!!!!!!!
Uncle Dave made the fourth trip to Walmart to get the disc fixed. He got the job done Yea!!!!!!!!!!!

Thanks Uncle Dave we it!


Saturday, August 24, 2002 at 04:48 PM (CDT)

WE HAVE PICTURES!!!!!!!!!!!!!!!!!!
Uncle Dave made the fourth trip to Walmart to get the disc fixed. He got the job don Yea!!!!!!!!!!!

Thanks Uncle Dave we it!


Saturday, August 24, 2002 at 09:31 AM (CDT)

Hi just an update, Carl's nurse was just in and said that the one drug that is causing the most nausea will be done by 10:00 thismorning!! she said he should feel much better after that has stopped. He still is getting pretty heavy doses of another one but the worse one will be done for this round.

Also I wanted to put the webaddress for Eric out there for you in case anyone would like to send him a note too. He is the 11 year old boy that we met here, and he gave Carl that St. Peregrine figurine with a prayer card.

It is www.caringbridge.org/ia/ericfischer


A Little bit ago, I layed down in bed with Carl, he rolled over and looked at me, He said "am I going to Jeannies today" He was wondering if he was going to daycare. I told him I wish you could honey.



Until later

Kelly

P.S. Looking foward to Auntie Janet, Grandma Phyllis, and Sam coming for a visit in a little while!!















Saturday, August 24, 2002 at 05:51 AM (CDT)

We had a good night! Carl slept very well, he is doing so good for not feeling well, hardly a complaint.

I wanted to ask everyone to keep another little boy in your prayers too. His name is Eric Fischer, we met Eric's mom right after the diagnosis. She helped give us alot of comfort and support the first couple of days after. Eric gave Carl a very special figurine that he had waited for a long time to get himself. It is a St. Peregrine who is the patron of Cancer victims.

Eric is a very special little guy to give that to Carl! they are from Iowa, and have been getting treatment here since April this year. They have asked all of thier family and friends to pray for Carl, and I would like to do the same for him and his family. I told Tracy his mom that she is an Angel, God puts them in our lives when and where they are needed.

Have a wonderful day, will check back later!

Love Kelly


Friday, August 23, 2002 at 08:36 PM (CDT)

Hello to everyone, Carl has had a very yucky day. The
Chemo was finally hooked up at about 4:00 am. No side effects until about 9:00am then he started getting the nausea stuff. We were supposed to have a bone scan done at 10:30 but he was getting sick up in the scaning room. So they sent us back to our room. Then they decided to retry it a bit later. It finally got done yea!!!

Today we had several visitors. Mandi came thismorning and brought a box of delicious rolls from a bakery here in Rochester. They were wonderful! Our good friend Steph came right after the bone scan and spent the rest of the day with us. We were able to sneak out for lunch with Holly, she was down with Blake for a sleep study he is enrolled in here at Mayo.

Uncle Chuck was here today too! Tom and Chuck went on a wild goose chase to walmart to get our pictures that we had put on a disc. We are in the process of trying to get pictures put out on Carl's web page. They were put on the disc upside down. So when we uploaded them on the webpage they were upside down. So Tom called Walmart and then they went back to have the disc redone. They rushed back with it to find out the second one was also upside down. So if anyone saw upside down pictures out there, that is why.

Hopefully we will get pictues added soon!! They have been giving Carl a med that helps the vomiting. You knew when it was wearing off, and it was time for a new dose, thats when he would start getting sick. They now have a iv with a continuous drip with that same med on a low dose. We also gave him a little tylenol, as he was complaining of aches and pains. This all must be working now, he is sleeping and seems pretty comfortable. Hopefully it will be a quiet night.

When we were out for lunch, we were able to get over to the
Ronald Mcdonald House to check it out. It is pretty nice over there. It is within walking distance from both Mayo Clinic and the Hospital. There is a great playroom, a gameroom in case Bryan is visiting, and a fun courtyard outside with play equipment.

I think Sam is coming tomorrow, Tom is on the phone with him right now. He just told him he is being a good boy!
It sounds like Uncle John and Auntie Shiela are spoiling him pretty rotten.

We had a Priest visit us today too! We had wanted to get to church here with Carl on Wednesday, they have a anointing of the sick on Wednesdays. But with his schedule being so messed up, it didnt work out. So a hospital chaplain made arrangements to have a priest visit our room to do that. He anointed Carl, we all prayed together, and he blessed Carl's guardian angel that Steph had brought for him, to watch over him.

We are hoping for a better day tomorrow. With all this vomiting he had no appetite at all. So no intake for food or liquids.

Steph is getting ready to leave, so I will walk her downstairs.

Have a good night!!!

Love Kelly






Thursday, August 22, 2002 at 10:36 PM (CDT)

Well Carl is asleep after taking a couple of hours to wind down. The chemo will be starting soon. We had tried to get things going around 6:30 but his urine counts were not where they should have been, so we kept trying to get him to drink fluids all evening, along with an IV too. They wanted him more hydrated than he was.

Carl had a fun day playing with Uncle Chuck, visiting a Dog down in the play room. (his name was Sammy) Carl also was quite a little phone hog tonight. He talked to Aunt Janet, Aunt Jill, Aunt Joy, Aunt Jean, Sydney, and of course Sam.

Sam wanted to come down to the Hospital right now when I was talking to him. Then he got on the phone with Uncle Chuck, and asked him where he was, then he said, why didnt you pick me up! It sounds like he will be coming on Sat.
He really enjoyed his last vist! It is so good to watch them playing together!!

Will catch up tomorrow!!!

Love,
Kely


Thursday, August 22, 2002 at 07:25 PM (CDT)

A big hug and kiss to Aunti Sheila and Uncle John
Happy Birthday to you Both!!!!
We Love You Very Much

Tom, Kelly, Bryan, Sydney, Sam & Carl


Thursday, August 22, 2002 at 06:27 PM (CDT)

Hey this is Bryan today was the first day that i visited carl. uncle chuck also came to visit and carl got some cool toys from him and some other presents from people. carl recieved some tractors and some Bob the builder fruit
snacks and a coloring book. I still have to get the little guy a present but i don't know what to get him. Tonight I'm going to spend the night. I want to spend more time with him because i haven't seen him for awhile. He has been going through a lot these past two weeks with tests and everything and he is really tough and i'm scared and worried for him. tonight he is going to start chemo thearpy and it's going to be a very intense doseage. he's been very happy and having a good day. that's what we want because we need him full of energy so he won't get as worn down during chemo thearpy. Iknow that he will survive because he is a strong little boy and i have faith in him and god will help him along this tough road. He's in all my thoughts and prayers and i love him so much and words can't express what kinds of feelings i have for him and the pain we are going through. right now all i now is he's in good hands right
now. god is watchin over us right now and i know that this chemo thearpy will get rid of his cancer in his body.

mom wanted me to say hi to Nick, Kiri, and sydney, good luck at the fair guys.

sincerley Bryan


Thursday, August 22, 2002 at 07:10 AM (CDT)

The Red car is back!!!!!!!!!!!!!!!!!!!!!!!!
Carl will be thrilled when he wakes up!!!!!
It will be a Great Day!!!!!!!!!!!!!!!!!!!!!

Will check back later,

Kelly


Thursday, August 22, 2002 at 05:09 AM (CDT)

Rah Rah

Carl must have been dreaming about you. He said Rah Rah
about 4:00am I just wanted to let you know you are in his dreams. He is still sweetly sleeping!

Love Kelly


Wednesday, August 21, 2002 at 10:15 PM (CDT)

Thank You all for your notes, it was so fun to log on tonight and see them all!!! We are truly blessed to have such wonderful family and friends!! It helps to know that we will never be alone. Knowing that we have such a prayer chain going is so comforting.

Today was a most frustrating day. Carl was supposed to go for a MIBG scan, and a Head CT thismorning. It started out that he was scheduled for 8:00 am. So he couldn't eat or drink after midnight. Well then it got shoved back to 2:00 then 3:00. He finally had them, and was back in his room at 7:15pm. Needless to say, he was a grupmy kid all day.

Jody and Melissa came down today, Sydney came too!!!
I was able to spend some time with Syd, and talk about what is going on with Carl. I love her outfit Jill!!! Thanks!!!
Carl bounced back after his scans, and was quite entertaining to us. He was able to get down some food, and juice, we figured he would be so shot he would just go to sleep for the night. In fact he is fooling around with Tom right now.

Well tomorrow we have no tests. The Dr did come in and speak to us about some of the plan. It sounds like they want to start kemo tomorrow night. He will be treated for this first round with a very intense dose. The Dr expressed that we should plan on staying in Rochester after this first round, they will probably treat for 6 days? then off for about 3 weeks. She feels with this intense therapy we should stay close by in case of any complications of Carl getting sick and needing medical attention. So we will be checking out this Ronald Mcdonald house for that period of time. They like to do this kemo at night to try to avoid alot of the nausea side effects. They are also going to use some antibiotic to ward off risk of pnemonia. Also an injection will be given to help produce more white blood cells for the affected bone marrow. So things are starting here wheather we are ready or not. It sounds like after 2 very intense rounds of kemo, they will re test, to look at the cells, and then go from there for further therapy.

We are looking foward to a quite day tomorrow without tests!!!! Our main focus now is to keep Carl eating. We probably will be feeding him what ever he wants. And that is not too hard to do.

Thanks again for keeping us in your prayers!!

All our Love

Tom, Kelly & Car Car


Wednesday, August 21, 2002 at 09:47 AM (CDT)

Hi everyone! We are able to use the libray Pc to create this web page, and hopefully keep everyone updated on Carl! Today we are scheduled for a couple of scans. Then Friday a full body bone scan. I think that will conclude the initial tests and procedures. We should soon know what the plan for treatment will be. Things have been pretty crazy this week, keeping track of when Carl is having what done, and when. I think I have been driving the Dr.s nuts asking 100 times about his schedule. finally one of his Drs wrote out a schedule for me yesterday. That has been very helpful. Oh by the way you will all have to overlook my spelling and grammar, my excuse is that I graduated from Simley!! Anyway we hope to keep this going and make it easier to communicate with Family and Friends!! I had better go and find Tom and Carl, they are buzzing around the place in a little car that Carl has monopolized since we got here. He had a really cool red one for a couple of days, but it got lost after one of the procedures yesterday, it was left on a different floor, Tom and Carl have been on a misson ever since, trying to find that favorite car. Will check back later!!!

P.S. will update phone no. so you may directly dial to our room

Love to Everyone!!!
Kelly





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