History

Journal History

Saturday, May 7, 2011 10:48 PM CDT

As Mother's Day approaches, I just want to extend a heartfelt Happy Mother's Day to all mothers of angels. I find it so hard during this time of year... the ads on television... between Mother's Day and "family vacation planning"... ugh, I just don't even want to turn on the tv.

Do I miss Spencer more on Mother's Day than any other day? No... I miss him tremendously everyday, but society and the media just pour salt in the wound... My head knows that I am a mom and will always be a mom, but my heart doesn't feel that way... I don't have my child to hug, to share the day with, to celebrate with... so Spencer, I'll be waiting on a sign... I know you are with me everywhere I go, but I always love the litle signs, the angel hugs, that help me through the days!

To my friends kids who so graciously claim me as their 'other mother' or just include me as part of their familes... I love you all!

Mother's Day - Another day to endure!

Thursday, December 16, 2010 2:36 PM CST

Came across this on another site and found so many things that truly related to where I'm at... a new normal... this will be my 6th Christmas without Mr. Spencer, but my first without his daddy... I try to continue finding my new normal...

THE NEW NORMAL

*Normal is telling the story of our child's death over and over again as if it were a common every day occurrence and then gasping in horror about how awful it really sounds.

*Normal is sleepless nights filled with what if's and why didn't I's.

*Normal is feeling more comfortable at a cemetery than a family reunion.

*Normal is dreading that paperwork that will ask do you have children - is there even room to write yes but he/she is no longer living?

*Normal is becoming paralyzed at the sound of sirens.

*Normal is trying to decide how to decorate our child's grave instead of our house on dreaded holidays.

*Normal is checking to see if I am wearing two of the same shoes, while searching for the phone I'm actually talking on and grabbing my keys out of the freezer or some other strange place where I had forgotten I put them.

*Normal is feeling closer to someone in Canada than the person sitting next to me because they too share this new Normal.

*Normal is sitting at the computer trying to type through the tears and sharing my deepest pain with a complete stranger because they too know this pain.

*Normal is tears waiting behind every smile because my child is not here to share important moments in my life.

*Normal is not saying the words "happy" and "birthday" in the same sentence ever again.

*Normal is crying every single day and knowing tomorrow will be no different.

*Normal is knowing without a doubt that I can never be hurt this badly again for as long as I live.

*Normal is being afraid of everything yet being afraid of nothing and then wondering which is worse.

*Normal is knowing that I love my friends and family but in a sense pushing them away because they just can't understand.

*Normal is a constant sense of "loss of control" at any given time or at any given place because you never know when it will hit.

*Normal is an ache in the center of my chest that I am learning to live with yet it still has the ability to double me over without warning.

*Normal is not knowing how much longer I can sit somewhere without getting up and screaming to the top of my lungs.

*Normal is suddenly gasping for a breath because you realized that you had forgotten to breathe.

*Normal is waking up in the morning and wondering why.

*Normal is feeling resentment towards people when they complain about how awful their lives are because they can't pay a bill, or their kid lied or didn't do their chores, or because they are having relationship problems, or in my mind, other trivial problems.

*Normal is always remembering watching your child die, begging God to save your child, and being totally helpless to save your child.

*Normal is wanting to scream, "SAY HER NAME! SAY HIS NAME! TALK ABOUT HER! TALK ABOUT HIM! STOP SAYING SHE OR HER, HE OR HIM! SAY THEIR NAME!"

Written by Angel Roberson, TCF, Las Vegas
In Loving Memory of her beautiful daughter Breanna Lindsay

Wishing all a very merry Christmas and a happy, healthy 2011! Every day is tough, I'll admit it, but I continue to try to live each day the way Spencer and Rob would have wanted me to.

Friday, September 17, 2010 4:25 PM CDT

It is nearly impossible to imagine that is was nine years ago today at about this time of day that we were allowed to see Spencer in the hallway between surgery and PICU. It was nine years ago today that Spencer's brain tumor was removed for the first time.

One year ago today, we Rob and I sat in Liberty Hospital learning that Rob would need to undergo major abdominal surgery to bypass his intestinal tumor.

Today, I sit here alone... losing both of my boys to the biggest terrorist in the whole world... CANCER.

One day at a time, I keep moving on... thats all I can do! I witnessed two boys fight amazing battles and yet they now look own on me from heaven. Keep sending me the strength to endure each day without you both!

Monday, July 12, 2010 8:13 AM CDT

Happy Birthday Buddy!!!!

Not a day goes by that I don't think of Spencer and say his name. It doesn't even seem possible that he would be turning eleven today. I see kids that were in his kindergarten class, but don't even recognize them as middle schoolers; so in my mind, Spencer is still 5 and in kindergarten. Proof that time does move on. Spencer has been gone five years and in many ways it still seems like only yesterday that we were making the trips to Children's Mercy, waiting on results and battling away.

The loss of Spencer's dad has only added to my missing him, but I continue to move forward, one day at a time. The one thing I do know is that although time doesn't erase the pain, time does lessen the pain and makes it more tolerable. Or perhaps its because I've finally accepted that I will forever be 'recovering bereaved parent' and a widow... just as with an alcoholic, I will never be 'cured'... but I am learning to live with the pain, make the best of every situation and remember Spencer and Rob in many ways... some with smiles, some with tears... but thank goodness for the memories!!!

Buddy, you gave us lots in your short time, beginning on this day, eleven years ago, when you made your surprise entry at 2 pounds 11 ounces... and remained determined each and every day thereafter. Love you and Miss you. Have a good birthday with daddy!

Wednesday, July 7, 2010 5:14 AM CDT

Words from an Angel...

I have not turned my back on you,
So there is no need to cry.
I'm watching you from heaven,
Just beyond the morning sky.
I've seen you nearly fall apart
When you could barely stand.
I asked the Lord to comfort you,
And watched Him take your hand.
He told me you are in more pain,
Than I could ever be.
He wiped his eyes and swalloed hard,
Then gave your hand to me.
Although you may not feel my hand
Or see me by your side
I've whispered that I love you
While I wiped each tear you cried.
So please try not to ache for me
We'll meet again one day
Beyond the dark and stormy sky
A rainbow lights the way.

In loving memory of my son Spencer Robert Mattson who passed away five years ago this morning, 7-7-05. A day I will never forget ending a life that touched so many in such a short time.

Buddy - Love you all the way to heaven... you got your Daddy there with you now and someday, I too will join you both. All my love to both of you!

Sunday, May 2, 2010 7:53 AM CDT

Buddy, hope you and your daddy are playing non-stop... you've got lots of catching up to do! Take care of each other and someday, I'll catch up with you both as well.

Missing you both more and more and more!!!!

Tuesday, March 16, 2010 5:19 PM CDT

Although I want to keep Spencer's page for him, I must let all know that continue to check Spencer's page that his dad has received a bad report.

Yesterday, we learned that Rob's cancer has advanced and spread to other areas in his body. The fight isn't over, we will begin more chemo on the 26th.

Buddy, please give us the strength to endure each and every day of this fight!

We miss Spencer so much and the day to day struggles with Rob bring the memories back like a raging flood. It still seems like only yesterday that I was hearing these words from doctors regarding him and that we began to prepare for the next step... still a bit unreal that I am doing this again, but we don't get to choose. Stress is the silent killer!

Thanks for checking on us and all prayers are greatly appreciated... the fight continues!

Friday, December 25, 2009 7:56 AM CST

MERRY CHRISTMAS BUDDY.... AND MERRY CHRISTMAS ALL!

We awake to a blizzard and snow piled everywhere, but it is Christmas. This marks #5 without Spencer... doesn't even seem possible. Buddy, we're doing our best to make it Christmas this year, but would be much better if you were here, but we know you are looking down on us and giving us strength to endure each and every day, this day too.

Rob's scan results were stable and he is eating better so we are thankful and greatful for that.

After chores this morning, I will proceed with getting Christmas dinner prepared for Rob's family so that will keep me busy, the best way for me to be on this day!

To all who have to travel this holiday season... be safe!

Merry Christmas!

Sunday, December 6, 2009 6:04 AM CST

It doesn't even seem possible that we are approaching our 5th Christmas without Spencer. It seems like only yesterday...

We are trying to get in the Christmas Spirit and trying to do the best we can, but with Rob's chemo underway it is even more difficult. We are currently awaiting scan results which we should get on Tuesday. His eating/nausea remain a huge obstical for us, so entertaining during the holidays is just going to be limited.

I did get Spencer's oak tree decorated out front... the only outside decorations this year and it looks beautiful. There are just some things that have to get done, no matter what, and that was one of them. I also have his memory trees decorated in the house... a couple of years ago, all of our friends that come to our "Tree Lighing Open House" brought an ornament that reminded them of Spencer... I have all of those on a tree with Spencer's Santa Hat for a tree topper... it is beside my chair and I love it... anything that reminds us of him is priceless.

The "Tree Lighing Open House" is on hold for this year as Rob just isn't up to having a house full of people. But we know that Spencer is looking down and enjoying the lights! And the highlight of decorating was to find his picture ornament that has a special little button that I push and hear his sweet voice say, "Merry Christmas, Wuv Spencer!" Thank God for modern technology that allowed me to record his voice, only wish I had recorded a lot more!

To all, we wish a very Merry Christmas and a Happy, Healthy 2010...

Sunday, October 18, 2009 10:26 AM CDT

Thanks to the Cameron FFA Kids for hosting the 5th Annual Spencer Mattson Fun Farm Day. The fun farm day is a day in memory of our Spencer that allows children to experience "farm life". We had about 200 kids come through this year! The kids have crafts, games, pools of corn to play in, a hay maze, pony rides, tractors for the kids to sit in, petting zoo... all the things that Spencer would have loved! And after a week or more of rainy, gray weather... the sun was shining... thanks Spencer, we know you approve of the day because the weather has always been beautiful for it. Just wish you were here to enjoy the activities, but then again, if you were, we might not be having this day... we know you are watching from above! I had several families comment that they have their kids picture from each year... one of the activities is to take the kids picture and make a farm oriented picture frame to put it in... memories, they are special!

Rob didn't get to attend as his chemo was kicking in yesterday, but he is doing ok... just the normal chemo uck... hoping and praying that it is our answer!

Spence... keep sending us sunshine so we can get that combine in the field and get crops out! Your favorite time of the year! Miss you buddy...

Wednesday, September 16, 2009 2:13 PM CDT

Amazing that it has been 8 years ago today, and just about this time of day that we stood in the hallway at Children's Mercy to see Spencer come out of surgery #1. I will never forget the look of relief in his face as he was rolled to PICU... although he was quite upset by noises that evening, he was at peace and that was a welcome site.

Amazing where the last 8 years has taken us as now we continue to fight for Spencer's dad and his battle with cancer. Cancer so sucks!

We know Spencer continues to be at peace and we miss him ever more, but know he is looking down on us and giving us all the strength he can to endure each and every day!

Thanks for continuing to check on us and a link to Rob's site is below.

Friday, August 7, 2009 9:05 PM CDT

What a summer! Doesn't seem possible that I am going back to work on Monday. It has passed so fast. With all of Rob's health issues, it seems like the marking of Spencer's angel anniversary and his birthday just came and went... not without the memories as they were even bigger and stronger with the medical issues going on now, but didn't spend so much time at the cemetery, didn't get a memory ad in the newspaper, didn't get to spend my time floating in the pool talking to the clouds. I did find a really cool LED solar light to put at the cemetery this year for his anniversary's... always amazes me how I find perfect things to decorate with. Friends were here on the 4th of July so Rob could be at home... a bitter sweet evening as the last time I hosted the 4th party was three days before Spencer passed away (4 years ago). But, with our friends is the best place to be on those kind of days, they always drag us through and continue to be by our sides as we battle Rob's cancer. There is a link to Rob's page at the bottom, I will save his details for his page. We continue to miss Spencer, even more if possible. There have been so many things that have happened with Rob's journey that have really brought back the memories and allowed for reliving Spencer's journey. He was quite a trooper and seeing/hearing what Rob is going through makes me wonder even more what Spencer really went through but didn't know any different and didn't ever complain. We continue to enjoy the butterflies in the yard and thanks for the beautiful full moon on my birthday... I sat on the front porch for a long time and watched it rise!

Thanks for checking in with us.

Sunday, July 12, 2009 2:11 PM CDT

Happy Birthday Spencer!

Doesn't seem even possible that 10 years ago you were born. So much has happened in 10 short years. Time does move on!

Thanks for the memories!

Tuesday, July 7, 2009 8:09 AM CDT

4 years you battled,
4 years you've been gone,
4ever we will miss you!

Love you all the way to heaven. Keep sending us strength to endure each and every day!

Sunday, May 17, 2009 9:46 AM CDT

It has been a while since an update and oh so much has gone one in our world. First off, I have established a new caringbridge site, for Rob. It is caringbridge.org/visit/robmattson and I will have a link to it at the bottom of Spencer's page. After a recent gallbladder attack and pancreatitis, we have found a very small cancerous tumor in Rob's small intestine. Details can be found on his page as I don't want to take away from Spencer's page. Spencer will forever be our angel and as we approach Memorial Day, remember him ever more...

You can shed a tear that I have gone
Or you can smile because I have lived.

You can close your eyes and hope that I'll come back
Or you can open your eyes and see that I have left.

Your heart can be empty because you can't see me.
Or you can be full of the good times we've shared.

You can turn your back on tomorrow and live yesterday.
Or you can be happy for tomorrow because of yesterday.

You can remember me and only that I've gone
Or you can cherish my memory and let it live on.

You can cry and close your mind, be empty and turn your back,
Or you can do what I'd want, smile, open your eveys, love and go on.

Buddy, we remember you every day and your memories carry us through. We just ask for the strength to carry us through this journey now.

Monday, March 9, 2009 8:17 AM CDT

Tried to post a new entry yesterday, but didn't take it, so I'll try again this morning. Seems like forever since I've updated, and I guess it has been a couple of months.

We are surviving winter... so ready for green grass and warm weather, but it has been better than last year. Until the rain Saturday night anyway. Mud always makes calving season so wonderful. We have lots of baby calves on the ground. Rob is getting ready to work on the planter to get it ready for another season. Seasons come and seasons go.

Saturday marked 3 years and 8 months since Spencer left us. No matter what else is going on the 7th of each month, I still mark the time in my mind... don't know if that will ever change or if I want that to ever change. In fact, as Rob and I were in the middle of messing with baby calves on Saturday I said, "just how did I manage to do all of this when Spencer was a baby and take care of him". Rob just smiled and said, "he just went along with us and you didn't sleep then." He's right, we laughed and shared some stories of Spencer riding with us and funny things that happened like turning over in his car seat while we were on a cow moving expedition. The memories carry us through.

Rob's anemia issues that we dealt with last year have returned... we attempted 3 months off iron therapy beginning in December because his counts had finally returned to normal and wanted to see if he could maintain, well we got our answer... no. So he is back on iron therapy. He tolerates it very well and recovered pretty quickly last year once we got to that issue. He is not nearly as low this time around, so hopefully his return will be even quicker.

I have 50 days of school remaining this year and then it will be POOL SEASON... my favorite season of the year! School continues to be very busy and I do my best when I'm very busy... I am looking forward to being in the yard and getting flowers going... yesterday as I walked around, many of my tulips and daylilies are popping through. So, it won't be long and I'll be mowing the yard and waiting on the butterflies to come.

Until later

Monday, January 5, 2009 7:16 AM CST

We survived christmas... it doesn't get any easier to try to find ways to celebrate the holidays without Mr. Spencer... but I guess just to make it through is an accomplishment.

We celebrated with friends on the Saturday before Christmas - a wonderful night in memory of Spencer. I had my brother and nephews on Christmas Eve and then hosted Rob's sister & family, brother and my mom and step-dad on Christmas Day. Christmas night we went to Hahn's for Christmas at their house. We had a pajama party at the Hahn's for New Year's Eve and our little friend Jared was so disappointed that he fell asleep before mid-night and didn't get to play with the noise makers...

Rob and I took care of the end of year farm things... like paying the national debt at the local coop... we worked calves one of the nice days and worked/preg checked cows on another of the nice days... we will sell calves soon and start having little ones again in a couple of weeks.

So now back to work... a rough morning indeed... our cat, Maynard, wasn't real happy this morning either not getting to stay in the house as I booted him out to the garage as I left this morning. And on to 2009 - another year, difficult to face another year without Spencer, but we will make it, just as we always have - one day at a time! Hoping for a healthy, prosperous year!

Happy New Year...

Monday, January 5, 2009 7:16 AM CST

Tuesday, November 25, 2008 3:23 PM CST

Harvest is finally over... Rob finished up with corn last Wednesday evening... finally. Harvest was just an average one for us here in Missouri, but at least it was average, not ravaged by floods, storms, etc. Calves were weaned on Thursday of last week and Saturday we took a little road trip to Iowa... hit snow a little north of Creston, so went east rather than further north... ate supper in Des Moines and traveled back home... still quite a few acres of crops in the fields... hope for good weather so those farmers can be done as well.

Thanksgiving is approaching quickly... we will go to Rob's sister's and to my mom's for dinners. Although we continue to miss Spencer tremendously, we do have many things to be thankful for... thankful for the six years that we had him, thankful for each other, thankful for our friends, thankful for the quality of life that we have...thankful that Spencer no longer suffers...

I have begun decorating for Christmas... my sickness that rears it's ugly head each year... Spencer always loved the Christmas lights, so I continue to find many ways to honor him with lights. As difficult as the holiday season is to get through, we will get through it... remembering Spencer in many ways, laughing, crying, and remembering, mostly just being at home where we feel as close to Spencer as possible, surrounded by his memories.

To all, have a Happy Thanksgiving and remember, find one thing each and every day to be thankful for!

Friday, October 24, 2008 8:00 AM CDT

Well, harvest has come to a stop with the rain... about three inches this past week. Rob has been able to get about 2/3 of the beans harvested... corn is still waiting. He will probably switch to corn now since who knows when it will dry up enough for the bean head to run smooth. Oh well... can't change mother nature... and he's busy shipping pigs.

Mizzou football has kind of "slowed" as well, but this week will surely be better results. We traveled to Columbia for the Oklahoma State game... we had a great day... thanks Dave Brown for asking us to go... wish the outcome would have been different, but it was a beautiful day for football (probably should have been home combining, but can't work all the time)!

Last weekend, as more rain fell on Friday morning, we made the quick decision to go to Iberia Missouri for the Circle A cattle sale, rather than watching on the internet. We left after I got off work on Friday, drove to Osage Beach for the night then got up Saturday morning and went on out to the farm... they have beautiful facilities. Rob has bought bulls from them for a couple of years but I hadn't ever been to the farm... we were able to get nine heifers bought, so that will give us some added entertainment come late January. Again, it was a beautiful day, and since we couldn't have been home combining, made it even better to be away... got home just at kickoff on Saturday night... all I can say is Texas is good! Sunday, Rob was able to get back to the field and got a couple of good days in before more rain.

Last night we went with friends to St. Joe for the Ron White Concert... laughed until our ribs hurt! Yesterday was teacher in-service and then parent conferences until late, so today is a day off... three day weekends, I love them! School just doesn't seem to get any less busy! This is our district state review year, so attended a meeting on Monday to learn what extra we need to do for that... always something!

Still have a little yard work to get done, maybe this next week will accomplish that. Rob's buddy seat in the combine is just as lonely this year as ever... certainly a time that we miss Spencer even more (if that's possible)... I just don't take the place, but I try!

Until later... we'll hope and pray that good weather comes our way so that we can finish harvest safe and sound! Buddy, we still see a few butterflies, but know with the upcoming forecast, not many more will be flying our way... keep sending us signals, we see and feel everyone, we certainly know you are with us everywhere we go!

GO MIZZOU!

Monday, October 6, 2008 7:28 AM CDT

Just a quick update... to our friends in Nebraska Cornhusker lands... we had this one coming... after 30 years, I think we deserved this one! Go Mizzou... Go Tigers!!!

The combine is running... beans are turning out pretty good. Thanks to our friend Rick for helping out all weekend, drilling wheat behind the combine... We've had two beautiful weeks of weather, calling for some rain tonight and tomorrow, hopefully we won't get to much and Rob can be back in the field.

Karen & I had a girls day out on Saturday... we started looking for new christmas decorations... it's an illness I have... and we came up with some new ideas for decorating at my house this year... I'll update a little closer to christmas... have to get halloween by first, usually I start decorating for christmas right after halloween.

I spent three days at Tan-Tar-A recently for our state Special Ed Law Conference... the weather was beautiful, the conference... mind boggling... so many issues, so many challenges in this world... still feel like I'm catching up back at my desk... put in lots of hours last week, hoping this week goes a little smoother... plus with Rob in the field I kind of need to get out of the office at a decent time to help him.

All else continues well... Rob will return to the doctor next week for his monthly shot and blood work, he does seem to be feeling good though... other than his back and legs ache with sitting in the combine all day... that's nothing new though.

Until later...

Sunday, September 14, 2008 12:26 AM CDT

September has certainly brought us rain... somewhere between 8" and 12" in the past three weeks... it can stop now! Rob says it doesn't have to rain again until May! However, if you're going to have rainbows you have to put up with the rain... dusk last night was very rewarding after three days of doom, gloom and rain... I stepped outside because the sun and finally come out and watched an absolutely beautiful full rainbow come into view, along with a faint double rainbow... my camera really doesn't do rainbow's justice, but the above photo is the sight... with Spencer's Oak Tree in the foreground. Spencer's tree has donw wonderful this year with all the rain we have had. Call it coincidence or whatever... took these rainbow pictures on the 13th of September and as I was downloading them and looking at other pictures, last year, on Sept 18th I also got some really good rainbow pictures... then as I was visiting with a friend on the phone, we decided these rainbows were special one's... this was the week, seven years ago, that Spencer really started downhill leading to finding his tumor on the 16th and having surgery on the 17th... so, I slept good last night after receiving a special gift from Spencer... thank you buddy... these are the things that get us through and keep us going!

I've also updated the photo album with some pictures from my gardens this summer. All of my flowers have just been beautiful... the butterflies have been abundant - thanks buddy! And there is a new angel statue in my yard, so I put in a picture of it as well... reminds me so much of Spencer and his fit throwing!

School is going good... midterms are Tuesday and it still kind of seems like the first week of school, but we are busy and it is going good. We have attended one football game, didn't travel this week due to the rain. We're going with friends next week to watch Missouri Western play in St. Joseph... a former Cameron graduate is their quarterback and friends daughter is an athletic trainer for the Griffons. Mizzou football continues to be good 3-0 for the season... that occupies our Saturdays! Go Tigers!

Rob is ready for drier weather... still has a little hay that could be done if it ever dries up. Then it'll be time to think about weaning calves and getting ready for harvest... crops should be good. Rob went to the doctor on Tuesday for his monthly B-12 shot and blood work... his hemoglobin is finally well within the normal range, but his iron level is still a little low... so continuing with the B12, Vitamin C and daily iron routine... could be a lifelong routine, but he is feeling good. We started him on blood pressure medicine a month ago and seem to have it regulated now... wish mine was as good as his! So, hopefully we have him healthy and ready for the busy fall season.

So, remember to appreciate the little things... the butterflies, the rainbows and even the snowflakes when they come... they are all special!

Friday, August 29, 2008 3:29 PM CDT

OK... TGIF!!!! I have now been back to work for three weeks and finished our second week with kids at school! Seems like it must be getting close to Thanksgiving...

Work is going good, just extremely busy. Although I will admit, returning to work this year was the hardest its been, it is better now that I'm getting back into the routine. Rob and I had a good summer and I just wasn't ready for that to end. Crops are looking good, although a rain would be welcome... we've been very dry now for pretty much the whole month of August... a big change from June/July raining every other day. Not such a great summer for the pool and I missed that, but I enjoyed it as much as I could. Rob says the pool doesn't pay bills so rainy weather makes for good crops and that does pay bills so I needed to just deal with it! He's right... fall will be a much better time with a good harvest!

Rob has gone to a couple of Pioneer field days and the Farm Progress Show since I've come back to work, so he's had something to do as well.

Hard to believe that as I walk through the halls of the elementary school, Spencer's classmates are now in the 4th grade... time does move on. I did a fair amount of reading this summer (something I normally never do, but decided I should try it). One of the grief books I read really made sense... life after loosing a child is like going to a party with a toothache... we learn to live, we learn to laugh, we even learn to have a good time and enjoy things again, but there is just always a nagging, dull pain that we never know what and when will trigger it to be a sharp pain. I think this is the best analogy I've read... so true, we are living, we do laugh and we do enjoy things, but not without the dull pain and the empty feeling.

Rob and I went to the State Fair the weekend before returning to work... in 37 years I can't remember the weather being as nice as it was this year. We had a good time, remembered old times with friends, but still bitter-sweet as this would have been Spencer's first year to have been old enough to show pigs in the 4-H division... so must admit, the hog barns were a little bit of a tough place to be... so we visited and moved on. Those memories and what-ifs just go with us everywhere but we wouldn't want it any other way, except to have him here with us! HEALTHY!

So for now, we're just passing the days... I go to work, Rob is cutting alfalfa once again and beginning to think about getting harvest equipment ready, although harvest is still several weeks away. Mizzou Tiger Football kicks off this Saturday and hopefully we'll actually make it to Columbia for at least one game and to see our friend's son, Colin Brown #61 play. Go Colin and Go TIGERS! Cameron Dragon Football is away tonight and will be home next week, so we'll being football next week.

To all, take care.. and enjoy every day!

Monday, July 21, 2008 12:30 AM CDT

The sun is shinning, it has it the mid to upper 90's and the pool water is finally getting nice!

We made it past Spencer's angel anniversary and birthday this past couple of weeks. Thanks to all our friends and family who helped remember with us. Rob and I did make a trip to the Olive Garden (noodle house) for supper one evening... that was Spencer's favorite place to eat. Time does move on, but some days are still really hard... and the hard days rear their ugly heads evem more often this time of year, but we just trudge forward and as I've always said, "this too shall pass"... Spencer didn't have bad days, just not so good days... so that is what we sometimes have... not so good days!

The weather finally gave us a break so that Rob has been able to get a lot of hay put up... still had about 2 inches of rain on Friday that we weren't expecting so we got some hay wet, but can't really complain about rain in July in Missouri. The corn has just tassled, so the rain is good for it and with this heat hitting us now, we really needed it. They are calling for a chance of rain tonight, tomorrow night and Wed so Rob is putting hay up like crazy today.

Three weeks from today I return to work... don't even want to think about that... summer goes SOOOOOOO fast. Until then though, I'll be enjoying the pool as much as I can. We don't have any thing else planned, other than the State Fair in August.

I had some landscaping done in my back yard this summer so I have been busy planting perinnial flowers in it... I think it will be really pretty next summer. I've planted a lot of flowers that the butterflies like so that I can lay in my pool and watch the butterflies... so peaceful. My mom got me a butterfly bush last year for my birthday and it has just done wonderful... loaded with flowers and the butterflies love it... so buddy, keep sending us butterflies! We miss you each and every day but you keep sending us little signs... we love them... like the clouds that look like you riding a bike and another cloud that looked like you laying down... and the butterflies and rainbows... they help us get through each day and keep your memory alive!

Until Later...

Saturday, July 5, 2008 8:00 AM CDT

In Loving Memory of Spencer Mattson
July 12, 1999 ~ July 7, 2005

Dear Spencer,

We thought of you with love today,
but that was nothing new.
We thought of you yesterday,
and days before that too.

We think of you in silence,
we often speak your name.
All we have are memories
and your picture in a frame.

Your memory is our keepsake
for which we'll never part.
God has you in His keeping,
we have you in our hearts.

Happy 9th Birthday

Love
Mom & Dad

Tuesday, June 17, 2008 9:27 AM CDT

Some more hurdles have been crossed this past week... we celebrated Rob's birthday on the 12th and then survived Father's Day on Sunday... thanks to Jennifer & Garrett... our neighbor children who have adopted us as their second set of parents and help us get through those hard days without our Spencer.

Congratulations to Brian & Kelly... friend's children who were married on June 7th... Spencer always called Kelly, "Kelly the girlfriend" since Karen also had "Kelly the Cat"... and "Brian from college"... he always had a way of describing everything and everyone. They were so gracious to include Spencer's name in the memorial section of their program and the memorial bouquet was beautiful.

Friends... we couldn't make it without them!

We finished planting crops a couple of weeks ago and then made a quick trip to Des Moines for the World Pork Expo. Due to the rain, we continue to not be able to get in the hay field, but maybe this week! At least we are not watching any of our crops be covered in water like many in the MidWest.

Health Update: We did blood work last Monday and met with a hemotologist on Tuesday... Rob's hemoglobin was up to 10.8, which means we've gone from 8.4 to 9.5 to 10.8 in three weeks... so we're approaching normal!!! The Hem-oc doctor did not see any thing in the blood work for concern with Rob being able to produce red cells... just is going to take time to rebuild. He believes the polyps and the gastritis were the sources of the bleeding. Rob will probably need B-12 shots monthly for the rest of his life and will continue to take iron pills and Vitamin C for quite a while. We'll check his blood again next week and then we may be able to move to monthly blood checks rather than bi-weekly. He does seem to be feeling better... has much better color and doesn't seem to tire as easily.

So... I'm going crazy with this cool rainy weather... not so great for the pool... but I've been able to get in a couple of days... I've been doing some of my summer jobs around the house, so the time hasn't been a total loss, but sure ready for some sunnier, warmer weather... and time to float in the pool...

Until later...

Wednesday, May 28, 2008 7:47 AM CDT

Memorial Weekend... the "unofficial" start to summer... and it hit 90 degrees!!!! Rob and I had a good weekend, although another difficult one, as I make daily trips to the cemetery throughout the weekend... don't want to miss seeing anything that our wonderful friends and family leave in memory of Spencer. His grave site looked beautiful and each time I was there, people were stopping by his grave to look at the decorations... thanks!

Sunday was an absolutely beautiful day... I mowed the yard, planted flowers and best of all... got in the pool! The water was a little cool, but with the sunshine and humidity, it felt great... Monday, Rob and I both mowed around the farm buildings and got things in good shape up there, then took a little drive through Northwest Missouri looking at crop ground and the "wind mill" farms at King City and Conception Junction.

For the medical update: The heart cath from a couple of weeks ago turned out fine. Rob's arteries are perfectly clear and his heart is working properly. This past week, he underwent a scope of his throat, esophagus and stomach to look for any sources of bleeding. Numerous polyps were again removed from his stomach and sent for biopsy, but no obvious signs of bleeding were found; however, his hemoglobin had dropped even lower, but he still didn't want to get blood. So, yesterday, one week later, we went to get results of the biopsy and have a blood check... GOOD NEWS... all of the polyps were benign and his hemoglobin has improved... this is the first week since April 22nd that we have had improvement. So, not sure what has made the difference... he has had two epogen shots, a B12 shot, and has been on three iron pills a day since April 22nd, so perhaps it is a cumulative factor that is finally beginning to work. We'll check blood again on June 9th and see the hematologist on June 10th for his opinions on what is going on... of course, Rob thinks we can cancel that appointment since he is better, but we'll see what happens between now and then. Today he is off to the field to start planting beans and I'm off to work to finish up by extended contract hours.

Spence buddy... saw several butterflies this weekend... wish you were here with us to run and play in the yard and help dad in the field. Keep sending us strength for every day!

Until later...

Tuesday, May 13, 2008 10:15 AM CDT

It is now May 13th, I survived another mother's day... not a holiday we chose to celebrate anymore, but rather another day in which we find a way to get through... Rob hasn't been able to plant corn yet due to continuous rain... however, he has been a real trooper with getting tests done...

Yesterday, he had a heart cath done so he was in the hospital, lying flat from 12:30 until 9:00 last night... the results, everything looked clear and working properly... just has the largest arteries the doctor has seen. So we've eliminated one more obstacle, but still haven't found the answer to why he is so short of breath and so fatigued. Our cardiologist fully believes that he has bleeding going on somewhere, so next week, Rob will have some more test done to try to find the cause of his anemia... today and tomorrow he is resting, Thanks Rodney for helping ship pigs this morning and tomorrow and for helping with the bulls on Thursday... Rob and I would never survive without friends to help pick us up when we are falling down.

Rob's blood work last Thursday was exactly the same as two weeks ago and the biopsy's from the colon polyps were good... so on to the next test, the waiting and wondering continues...

Spence, buddy, keep sending us strength for every day, sunshine and warm weather would be great too... school is out next week and then I'll be out in the yard everyday just waiting for the little signs you continue to send... thanks.

Thursday, May 1, 2008 7:57 AM CDT

Well it is May... the weather has not allowed us to plant any corn yet, but to be honest, I don't think Rob would have been able to spend a day on the tractor anyway.
The past couple of weeks has certainly brought back many memories of sitting in waiting rooms, waiting on results, etc. Long story short... when Rob began shipping out pigs this turn and found out that he was extremely fatigued... had to rest before he could drive home, etc. His blood pressure is now dropping low, 101/55, which prompted him to have a treadmill stress test, chest xray, and blood work-up. On Monday of this week we met with the doctor for results... chest xray shows a slightly enlarged heart; stress test showed a normal EKG, but the heart scans done with the stress test show that he has "multiple segmental reversible defects"... well see the cardiologist on Friday to more fully understand what this means... probably going to need to have a heart cath done. The big surprise was in the blood work... Rob was extremely anemic... close to transfusion level... been quite a while since I've thought about those numbers... anyway, he had a colonoscopy completed yesterday, had some polyps removed which were hopefully the source of blood loss leaving him with limited red blood cells. The polyps were of course sent to lab for a biopsy, we'll get those results next week, but the rest of his colon looked good with the exception of a couple of spots of diverticulosis. He also got a shot of epogen to help his blood recover.
So, hopefully, he is going to start feeling better very soon... we'll see the cardiologist to determine what we need to take care of with his heart and recheck his blood work next week to see if his red count has recovered.
I do believe the stress of the past several years has certainly caught up with us... hopefully we can get these things resolved and Rob will be going strong once again...
So, bring on some sunny, dry weather... we need to get crops in the ground and that will relieve a whole bunch of stress...
I have 13 days of school left, and will work one week after that... then I'm home for the summer... and sooooo ready to float in the pool... hopefully some warm weather will come our way so I can get the pool opened up.

Spence buddy... have thought about you an extra lot this week while hanging out in the hospital... miss you more and more... keep sending us strength for each and every day... I have seen a couple of butterflies in the yard... thanks!

Thanks to all for continuing to check on us!

Tuesday, March 11, 2008 7:28 AM CDT

The forecast for today is 62 and we are so excited! Rob and I are so ready for some improved weather (along with everyone else in this part of the country). We started feeding hay in November and haven't had a break from it yet. We have gotten along pretty well calving... considering the weather! We've lost a few, but that's to be expected given the rain/snow/ sleet/ice... it has just been crazy. The net wrap on the hay bales was finally workable this past weekend!

OK... enough of the farm life... Rob and I are doing much better... we both still have a cough, but in general we're feeling pretty good... having more sunshine is a huge help to the wellness and attitude side of things as well. We spent this past weekend enjoying getting away from home a little. We went to the Hereford House (our absolute favorite place to eat) in Kansas City on Friday night and had a wonderful steak supper. On Saturday afternoon we traveled to St. Joe and went to Olive Garden, which has recently opened there... it's going to be real nice to have a Olive Garden closer to home. Olive Garden was Spencer's favorite place to eat, but he called it the Noodle House, so every time we go to the Noodle House we have lots of memories, but they are good ones. Rob and I will be married 20 years tomorrow, so supper out was our treat. Some days 20 years seems like only yesterday and some days it seems like forever ago... we've road quite a roller coaster in our 20 years, but the ride continues. I'm very happy to be celebrating 20 years, but very sad that we also have to deal with our grief of losing Spencer as well... not something parents should have to do at their 20th anniversary. On the other hand, at least I still have my husband to celebrate with!

Spencer buddy, we are so ready for warmer weather and to see butterflies and rainbows. We think about you and miss you everyday! Happy Easter Buddy!

Monday, February 18, 2008 7:18 AM CST

Just a quick update... prayers for Gina Hill and her family (our friend who used to teach at Cameron)... Jason passed away on Wed. Feb 13th after battling his brain tumor. His services are today in Tama, IA. Jason was 36 years old. He leaves behind Gina, Tessa and Tyson who are 6 and 3. Our hearts are breaking for them... the memories are once again so real.

Rob and I are doing okay... Rob's medicine seems to have his blood pressure in good shape and he's not had any more spells... however, the weather needs to break SOON!!! We had a couple inches of rain followed by about 6 inches of snow on Saturday night into Sunday... with baby calves coming left and right, this is just the prescription for disaster... as far as we know, we only lost one calf yesterday... Rob is just now on his way out this morning to see what is going on. It just seems like winter has lasted forever! We started feeding hay at Thanksgiving (rather than Christmas) and the weather has just been horrible all winter long... we haven't even made our normal winter trip to the Hereford House for an awesome steak dinner... but we'll get there!

We did go the the Cameorn Dragon's Basketball game Friday night (only game we've been to this winter). The boys beat Chillicothe. It was nice to get out and see some of our friends, but I do understand why Rob hasn't wanted to get out... once we are in and warm that is where we like to stay.

I ventured to the cemetery Saturday morning, first time I've been there in several weeks... to clean up the Christmas decorations and replace them with some spring flowers... I'm trying to get spring here! I am glad I got that done because it did look pretty shabby out there with the brown christmas wreath and wind blown flowers out there... the winter has been hard on everything. Of course I'm sure by purple and yellow gerber daisy's look great with the snow on them...

We missed a lot of school week before last due to the weather, so now we've added a couple of days on to the end of the year... still should be out by May 20th... I'll work a week after that then swimming pool... here I come! Can't wait!!!!

Until later, can't wait for warmer weather and sunshine!

Sunday, January 27, 2008 2:39 PM CST

OK... I know it has been too long since an update because I couldn't remember my password when I did my login to update... or maybe I'm just becoming more forgetful! Anyway, can I just say that January has been an EXTREMELY long month.

Rob and I made it through Christmas... that is about all I can say about that. One would think that by the third christmas without a loved one, it would get easier... NOPE! Day to day is easier, or at least more tolerable, but Christmas is still tough... we celebrated with friends on the 20th, and we had a wonderful evening with our house full of friends, each bringing us a new ornament so that I can continue my ornament tree decorating sickness and now we'll have a "open house tree" next year. Thanks to all! We went to my mom's on Christmas Eve and had christmas with them and my brother and his boys... a nice evening... fun to be with the nephews age 9 and 5, but makes us wonder even more where Spence would fit in the mix... he and Alex were six months apart in age, and Brett is nearly the age Spencer was when he passed away, so lots of memories and lots of wondering. On Christmas Day, I hosted lunch for Rob's sister and her family, his brother, and then my mom and step-dad, brother and grandma came as well. Once again, tooo much food and a nice day, just an empty hole without Mr. Spence... many memories though! Just so many memories and so many holes in our hearts! Couple with extremely cold weather and a person finds themselves in a hole pretty quick.

The week between Christmas and New Year was busy with year end farm stuff... sure with that either Year End or Christmas could come at a different time... at least good crop prices made this process a little less painful. New Year's Eve was spent with friends, visiting and eating, Rob wasn't feeling well so we cut the night short and headed home right before midnight. We made a trip to the doctor with him, had an EKG, started him on some blood pressure medicine... he is feeling much better, but the doc wants us to check into some more tests just to rule out anything else with the old ticker, Rob says he is feeling better and we'll deal with it when he feels bad again.

The past couple of weeks have been very cold... snow on the ground and below zero temps... choring has been miserable. Rob has spent a lot of time in the house... not the best thing for him, but can't blame him as nasty as it has been... today is very nice and thank goodness, we started having calves this week... only two have calved so far, but I'm sure we'll have more soon... the heifers are the only ones due right now, the rest of the cow herd will start the second week of February... hope the weather stays nice!

Please say an extra prayer for our friend Jason Hill... his wife used to teach with me at Cameron and they now live in WI... caringbridge.org/wi/jasonhill. Jason relaped with his brain tumor in late summer, had surgery in November and has been on a rollercoaster of complications since his surgery. They have two little kids. Jason is currenlty at Mayo's and has had a good weekend with finally getting some relief from hydrocephalas. All prayers are greatly appreciated... I spoke with Gina the other evening on the phone and they know the journey is long!

Spence... we are so ready for Spring if you could hurry that our way... we know as baby calves are born it will bring back memories of you, loving to watch the babies and always picking out your favorite... hope we have some cute ones just like you liked, with white faces. We miss you more and more!

Until Later...

Friday, December 21, 2007 1:36 PM CST

Merry Christmas to all...

Rob and I hosted our Annual Tree Lighting / Open House last night and had a wonderful time with friends... telling stories, remembering the times we had with Spencer and the memories. Santa doesn't visit us anymore as we've asked him to spend the evening with other children who really need a personal visit from Santa, the tree is lit in a different fashion with spot lights rather than strings of lights hanging from the tree... so glad with the ice we've had the past couple of weeks. We also have the tractor decorated once again, like last year.

I had lots of good help from our friend Jennifer, who helped me spruce up the house and prepare food for the evening... many of our friends brought us ornaments for me to decorate trees with... this tree decorating thing has become quite a "sickness" for me, but I do enjoy my trees, lights and decorations. Spencer always loved the lights so we find comfort having all the decorations lit.

The night with friends is what gets me through the Christmas season... I also finally made it to the cemetery yesterday... it was really eating on me that I hadn't been able to get Spencer's headstone decorated for the holidays... I couldn't have the Open House without first placing the special decorations for Spencer.

The rest of our holiday plans include a Christmas Eve at my mom's with my brother and his boys and Christmas Day at my house with Rob's family... then on to the normal year end bookkeeping, farm life events...

Spencer, buddy, we miss you more and more... the holidays just bring so many memories... everything everywhere reminds us of you... we know you are loving the lights from your view... please keep sending us the strength we need to get through each and every day... you've done a great job for the past 2 years and 5 months... for those who say that it gets easier with time... perhaps more tolerable, but so far, each year is not easier, we just continue to find ways to make it through each and every day!

To all, we wish you a very Merry Christmas and a Happy New Year. Best wishes for a prosperous and healthy 2008! Remember, Yesterday is history, Tomorrow is a mystery, Today is a Gift... make the most of it!

MERRY CHRISTMAS!!!

Rob & Julie

Tuesday, November 27, 2007 7:14 AM CST

WAY TO GO MIZZOU!!!! What a wonderful night in Arrowhead Stadium Saturday night! Rob and I and a group of friends went to the Mizzou - KU game Saturday... started in line in the afternoon, then made our way through the 2nd largest crowd to be in Arrowhead to watch the Tigers beat the jayhawks... what a night in Missouri football history. The full moon beamed down upon us... Spence... really felt like you were right there with us... we know you were... you're everywhere we go, but extra close Sat. night... thanks! The Tigers will now play in San Antonio this Sat night... our friend Dave Brown (a fellow teacher) will be making the trip with his family... his son is Collin Brown #61... a starter for Mizzou... we wish them a safe trip while we will be watching the game from our living room... oh well, it's warm there!

Rob finally got harvest over with a week ago this past Sat... seems like it lasted forever... had several breakdowns along the way, but finally got everything out of the field and the equipment is mostly put away for winter. Today's agenda begins weaning calves... we're about a month late getting that done as well, but one thing at a time... hopefully they'll get them all weaned between today and tomorrow... let the bawling begin...

I've been trying to get the house transformed to Christmas. I am hosting our Special Education staff on Dec 11th, so time is ticking for getting things in order... got another tree up last night, so I'm over half done. Today, after school, I'm going to finish the outside decorations... Rodney & Kathy brought my tractor back home on Sunday (thanks for getting it running for us) so I can get it decorated in the front yard once again. The hard part about decorating is the memories... so it requires some "tear breaks"... Spencer so loved the Christmas lights... could have cared a less about presents, but loved the lights... so I put up lots and lots of lights because we know he has a beautiful view of them from his seat... the full moons the past few nights have added to the emotions, because he would always run to the window when he saw a full moon, quite in amazement... so, the little things that keep us close, the things we used to take for granted have such a different meaning now.

No big plans for the holidays, food, fun, friends & memories... what more can we ask for?

So for now, got to get to work... GO MIZZOU!

Monday, October 22, 2007 8:13 AM CDT

A huge thanks to the Cameron FFA for hosting the 3rd Annual Spencer Mattson Fun Farm Day on Saturday... it was a beautiful day and we had a great turn out... a wonderful tribute to Spencer and a way to keep his memories alive. The FFA kids had a petting zoo, hay maze, crafts, a story teller, snacks, games and pools of corn for the kids to play in and experience a little bit of farm life... the heart of Spencer. I had a display of some of his favorite things and pictures so that all could see his smile. Thanks again to the FFA and the community for supporting this event.

Rob has been in and out of the field over the past couple of weeks... gets in for a day or two, then another rain and he's out for a day or two. Harvest is moving along, rather slowly, but moving along... he has about 150 acres of corn to finish and then on to the beans... several days of harvesting yet ahead of us. I try to help him where I can and when I can... rode the first couple of days with him, those are always the hard ones... his buddy seat is just pretty darn empty and is difficult... Spence didn't think that combine should run without him in the buddy seat... so I try my best to fill the buddy seat...

Work is keeping me busy... parent conferences are this week, so that always stirs up some more concerns for us to address through the diagnostic team... starting to think about christmas decorations and where I'm going to put all my trees this year... every year must be a little different when it comes to decorations... the plan for outside decorations will be coming together as well... as much as I hate to think about winter, I love decorating for Christmas... the good with the bad I guess.

Anyway, that's all for now, we are doing good, keeping busy, and keeping Spencer's memory alive!

Thanks for checking in on us... I'll try to get some pictures from the farm day... forgot my camera so I'll beg some from the FFA kids...

Tuesday, September 4, 2007 7:02 AM CDT

OK... we have made it through August and now on to September. We traveled to the State Fair for a weekend in August, I'm certain we have attended the fair when it has been just as hot in all the years prior, but dang were we about to melt... we traveled from one air conditioned building to another and watched a lot of things going on in the Mathewson Building. We enjoyed seeing people we only get to see at the fair and summer just isn't summer without the fair.

I began work on August 3rd... kids came on Aug 15th... we have been very busy enrolling new kids and getting evaluations started for the year. I have been able to get out of the office at a reasonable time each afternoon and have still been enjoying a couple of hours in the pool. I'm thinking today could be the last day for that as the temperatures are to cool off after today.

We started fall calving this past week and have at least four on the ground... probably a couple of more this morning. I'm glad the weather is a little cooler for that. Harvest is still a week or two or three away... we were late getting corn planted so harvest will be a bit delayed. The late rains have hopefully helped the soybeans. Rob seeded alfalfa in mid August and the rain has really brought it up, looking good.

Thursday night started Cameron Dragon Football, we lost to Excelsior Springs, but enjoyed seeing people at the game. Saturday we watched the MU Tigers play... one of my fellow teacher's son starts for MU... GO TIGERS! We also listened to Missouri Western's game as their starting quarterback was the Cameron Dragon quarterback two seasons ago... GO GRIFFINS! So changing the seasons... harvest, football, life isn't too bad!

Buddy, we miss you but see the butterflies everywhere we go... thanks for the memories!

Friday, August 3, 2007 7:59 AM CDT

Well back to work this morning... a bit difficult to get myself up and around this morning. Now that the weather is to turn very hot this next week, of course, I'll be working, but routine will be a good thing!

Rob and I took a little road trip yesterday, went to Waverly and got a few peaches (pretty pricey with the freeze this year)but can't make it through summer without peaches. Then, we traveled on in to Kansas City to have supper at the Hereford House to celebrate my birthday.

Town got 1 1/2 inches of rain yesterday evening, our house (3 miles outside of town) got a whopping 1/2 of a tenth... I think the rain is out of the forecast and crops are going to go down really fast! Corn in the Waverly area was beautiful. Ours continues to try to hold in, but the predicted mid 90's will change things in a hurry... however, we've had these years before and we'll have them again.

Well, better get to inservice but wanted to let everyone know that we are still alive and well and we survived July. Although I'll be the first to admit, July was tough... year two isn't any easier than year one, but we made it!

Take care... we'll make it to the state fair and then summer will be officially over!

Saturday, July 7, 2007 6:52 AM CDT

Distance makes us far apart and darkens our today,
we have to keep remembering you're just a thought away.
When the world is too confusing, and times are hard to bear,
We pull your precious memories, your bright spirit from the air.
If we sometimes drift into a lonely state of mind,
we gather up the memories of the days we left behind.
And though you are not beside us,
We have your memory in our hearts
and draw upon the warmth and love
that lives while we're apart.

Two years ago this morning, Spencer took his final breath and climbed on his rainbow. In many ways it seems like only yesterday that I heard that little voice saying "mom, mom, mom" and heard the little footsteps coming up the hall each morning. In other ways it seems like forever ago that we were able to hold Spencer, hug Spencer and have him in our lives. Days continue to pass, but not without tears, pains, laughs and memories, that will always be a part of our lives.

Thanks to all of those who continue to check on us, leave messages and "ride the bus" with us!

Wednesday, June 27, 2007 7:10 PM CDT

OK, we haven't dropped off the face of the earth here at the Mattson's... just haven't taken the time to update...

We finally got crops finished the first week of June, then it was on to shipping pigs at 4:00 and 5:00 AM three days a week for three weeks... thanks Garrett for spending the night at our house and helping Rob with the pigs... I REALLY APPRECIATED IT! Since the pigs, Rob has been busy with baling hay while the hired man has been washing barns. This week we restocked the barns, so another turn is on the way.

I finished up my work hours and have been floating away in the pool. The water is still not overly warm, but with the sun shining it has been good floating weather... looking like next week will be very good pool weather! We are to get some rain tonight, and we are ready for it. The crops are looking pretty good, but with the late plant dates, they have a long way to go so rain is greatly appreciated.

We had a little trouble at the cemetery once again... sometime the weekend of June 8th, someone stole Spencer's solar light, the flower arrangement and the stained glass butterfly... it is quite disturbing to think that someone can steal from a cemetery and live with themselves. Anyway, I have replaced the light with a different one and replaced the flowers... will be hunting for another butterfly.

We will quickly be approaching the two year mark and Spencer's 8th birthday. We don't have anything big planned, just to take one day at a time and get through it. In some ways summer seems even harder than the rest of the year, perhaps because I have more time on my hands, but mainly because everywhere we go and everyone is planning all of the things to do with their kids... really leaves an empty hole in our hearts! So I just float and watch the clouds pass in the blue skys, knowing that Spencer is watching every move I make... I can talk to him all day if necessary from my pool! It is so relaxing... amazing what it does for my blood pressure issues!

Rob and I haven't made any vacation plans for the summer other than the annual trip to the State Fair in August. We may get away for a day or two road trip to Iowa, but that is always a spur of the moment idea when the wheat is out, hay is layed behind and livestock is under control, then we can jump in the Yukon and disappear but only for a very short time, if at all!

Anyway, until later... we are doing fine, staying busy and enjoying the pool and friends.

Thanks for checking in on us and leaving us messages in the guestbook, we treasure each and every one.

Tuesday, May 22, 2007 3:17 PM CDT

SCHOOL IS OUT! The kids finished up yesterday, I have five more days of work and then I'll be finished up... the year has gone very fast and has been a good year.

Rob finished with corn last Thursday and switched to beans, he is getting along well. He did pause long enough on Sunday to attend our niece Sara's graduation party for a little bit. Congrats to her, she is going off to Northwest Missouri State University in August and want to major in Elementary Education.

The weather is calling for rain tomorrow & Thursday, but if we don't get too much Rob will spend the weekend back in the field. He has also been getting up in the early morning hours to ship pigs this week. About 300 acres left of planting and then on to hay.

Don't have any big plans for the holiday weekend. Rob and I will make our rounds to the cemetery either Thursday or Friday evening. Spencer always liked going with me to put flowers on granny & papa's grave and would blow them kisses and was always so concerned about who would put flowers on our grave when we went to heaven... he was so thoughtful! So, decorating the grave is a very important item to us... of course it stays decorated but Memorial Day requires special flowers.

The pool has cooled back off with the cool nights, but I know it will soon be warm once again and I can float, float, float! Looking forward to not setting the alarm clock and getting some things done that have been lagging around the house.

Until later... Buddy, Memorial Day Weekend is for memories and we have many, many, many. You blessed us each and every day with those "spencerism's" that are forever on our minds! We miss everything about you more and more but know you are in a better place! It doesn't seem possible that it was two years ago this week that the doctor's told us they had done all they could do and we began our journey with hospice. A tough journey indeed, but one you were ready for, the days became long and the journey was just that, but you are now pain free and free from the tumor... dad and I are doing okay, taking one day at a time, keeping you in our thoughts and hearts every moment of every day, but moving ahead with life. Love you always!

Thanks to everyone that has celebrated the memories with us and continue to travel the journey with us!

Wednesday, May 16, 2007 7:22 AM CDT

Well things are looking up at the Mattson's... we made it through Mother's Day weekend, one we kind of try to just skip right over, mom's shouldn't have to celebrate with a visit to the cemetery, but I did, and I survived. The pool reached 80 degrees on Friday, so in I went... Saturday I had my brother's boys for awhile so we played in the pool again. Sunday, I mowed the yard, visited Spencer and then came home to float in the pool again... yes I got a little too much sun, but what better thing can happen on Mother's Day weekend!!! And to top it all off, Rob got in the field to start planting corn! We had a little shower yesterday that kept him out, but he's back in as we speak this morning! The Hahn's came for 'family nite' supper on Sunday night and the kids got me candles for Mother's Day, they have been more than wonderful to Rob and I each and every day! School is out this coming Monday and then I word 5 days after that then to the pool full time! Of course, I'm starting to make my TO DO list for home, my rule has to be that I have to accomplish something on my list in order to be in the pool, otherwise it would never get done as I hate doing housework! Still have flowers to plant, but I am making progress. Mom brought me a butterfly bush for Mother's Day and I planted it near the peeing boy fountain, looking forward to watching the butterflies that we know will come! Have seen a few already, thanks buddy! Dad said he had one with him in the field on Monday! Sara (Rob's niece) graduates from high school this weekend and I'm the cake baker, so I'll be gearing up the decorating on Saturday to be ready for Sunday, congrats to her, she has worked very hard through high school and wants to become an elementary teacher!

Anyway, we are doing good and continuing to take one day at a time. Thanks for checking on us!

Tuesday, May 8, 2007 1:00 PM CDT

Well we haven't washed down the creek, but close... good thing the corn seed is still in the bag or it would be down the creek by now. I had to let water out of the pool as it was running over the top on Monday morning. Rob hasn't planted any corn yet, getting a little anxious, but after these rains, glad he hasn't. One sure thing, when it dries up he will be going like crazy to get corn, beans and then on to hay. The cows are all out to green grass at this point, so chores are minimal. We still have one heifer to calve and a few cows left but are about to finish that up as well.

School will be out MAY 21st... I will work one week after that date and then be hoping for warm weather so my pool can warm up. We are busy finalizing testing and meetings to wind up our year!

Spencer buddy, we miss you even more but know you are watching over us... I've seen the butterflies everytime I'm in the yard... thanks!

Until later, thanks for checking on us!

Monday, April 16, 2007 7:24 AM CDT

Well since the last post of really nice short wearing weather we experienced record setting cold... my shrubs and trees look terrible, Rob's alfalfa that was so beautiful is now a white/yellow pale mess, the wheat is some shade of pea green and the pastures that were blowing in the breezes are now flat once again, and lots of rain/mud... such is life, just when we think things are going good... boom, something has to happen.

The good news, the sun is shining today and we are scheduled for a week of good weather... glad we didn't have any corn planted yet! We had three more calves born over the weekend, kind of winding that up... the vet is coming on Tuesday to work calves so we'll know for sure how many we have left after Tuesday, then we can start turning them out to pasture as well.

Rob and I continue to do fine... he is getting things ready to go to the field as soon as the weather permits and I'm really busy at work this time of year. We are busy evaluating preschoolers and kindergarteners along with a few older kiddoes... we will be winding up the school year before we know it and then on to floating in my pool (was covered in ice again last week, good thing I hadn't opened it yet and turned on the pump).

Until later... thanks for continuing to check in on us, posts seem further and further apart as not much changes in our world, it is so hard to believe that we are quickly approaching two years without Spencer, but time does move on and we're trying to move on with it!

Tuesday, March 27, 2007 7:16 AM CDT

Not a lot new here at the Mattson's... other than lots of baby calves. The temperatures have been wonderful, so nice to chore in shorts and a tshirt, however, still need the mud shoes (quite a site let me tell you) because of the rain... it just keeps drizzling rain, but the ponds are full! We are about 2/3s of the way done with calving, still have 5 of those heifers to go, but they have all done well. Rob got bulls bought as most of our older bulls were needing to go to town, so spring has sprung. The wheat and alfalfa are so beautiful all around the house, my yard is starting to green up, it really doesn't get going until Rob puts the corn fertilizer on it, then watch out! I have the cover off the pool and can't wait for it to get warm, however, I keep remembering, it was weather like this last year when we got it in April, then it got cold again and I didn't think it would ever get warm! Rob hasn't got the planter out yet, but I'm sure within the next two weeks he'll be getting a little more anxious about planting season. School continues to go good, still loving my diagnostician job, very busy right now with early childhood kiddo's from screening and looking at all we have to finish in the next 9 weeks! Whew... that isn't much time for this stack on my desk, but it'll get done!

Keep Jacob T in your thoughts and prayers as they are in Tx going through radiation. caringbridge.org/visit/jacobt. They are from St. Louis and he is battling the same type of tumor that Spencer had!

Spencer buddy... Cousin Brett says he misses playing with you, he loves riding with your bear in my truck! We all miss you a lot as Spring time was your favorite time to get out and ride your gator... can't wait to see the butterflies this summer! Always in our thoughts, prayers and hearts!

Sunday, March 4, 2007 5:20 PM CST

Finally a nice day without tooooo much wind... this winter has seemed like it has lasted forever and the three weeks that we have been having baby calves has seemed like an eternity... we have about 40 on the ground now... it has been quite a challenge with the blowing snow, very cold temperatures and rain/mud to our ears! It is just so frustrating to work and work and still end up losing a few to the snow drifts, mud and creeks... but, the only people that don't loose one now and then are the people who don't have them! We have a couple of really cute black white face calves with white feet that I'm certain Spencer would have once again picked as his favorites. The calves are really starting to run and play this afternoon in the sun, now we just need green grass!

Rob and I are approaching our 19th anniversary on March 12th... we celebrated a little early... we went to see George Strait Friday night with friends which included supper at the Hereford House... supper was great and the show was wonderful... can't ever go wrong with George! I saw him a couple of years ago and Rob stayed home with Spencer... this time we decided to take the guys along too, we had a wonderful time!

This next week marks 20 months since Spencer left us, doesn't even seem possible, sometimes it seems like only yesterday, other times it seems like forever ago! One thing remains constant... he's always on our minds and only a thought away! We continue to remember the good times we had! Say an extra prayer for a little boy from St. Louis that is battling the same tumor that Spencer had. Jacob's webpage is: caringbridge.org/visit/jacobt Jacob was diagnosed about the time Spencer passed away. He had surgery and stem cell transplant a little over a year ago and relapsed a few weeks ago. He has been through another successful surgery and they are now in Texas beginning radiation and oral chemo. I have been in touch with Jacob's parents all along their journey and continue to keep them in my thoughts and prayers each and every day... it is a rollercoaster ride and we know that thoughts and prayers are very welcome along the ride.

Tuesday, February 13, 2007 11:14 AM CST

Home today... another snow day! Not sure how much snow we have because it is all blown in a pile, but I'm guessing 4-6". The wind is really blowing and then it is to get extremely cold tonight, tomorrow, tomorrow night and Thursday, so hard to say when we'll return to school! Oh well... got my tax work done this morning, so it is ready to deliver to the tax lady. I'm going to start painting on my bathroom today. I wallpapered in the kitchen over the weekend, now for the bathroom. We have lived here for nearly 8 years and I hadn't redone anything... time for a little change, not much else to do with all this miserably cold weather we're having.

The heifers have been very slow to calve... we have a total of four now (haven't checked with Rob yet today, kind of afraid to ask). The cow herd started calving on Sunday so we should have been expecting this kind of weather. No calves have arrived in my house yet, so I'm taking that as good news. We have one bottle calf from the heifers, crazy heifer didn't want to claim her calf, only wanted to jump fences, so she has a proud new owner and we have a bottle calf...

One sure thing, we are ready for warmer weather... I keep looking at the frozen ice cube (swimming pool) in my back yard and dreaming... but I know in July we'll be wishing it was cooler (well Rob will be, I'll be floating). No big plans for Valentine's Day... just another day around here, always dealing with calves, but we'll get to the Hereford House for supper soon... I can't ask for much more than that!

Until later,

Wednesday, January 24, 2007 7:34 AM CST

Long time no update, but all is fine here at the Mattson's! I haven't been working much lately (well at work anyway)... we have had ice and snow and missed nearly a week of school, but all is better now, although some really cold weather is in the forcast for next week.

Our good news this morning, we woke to our first heifer calf this morning... Rob and I kept our own heifers last year for the first time in all the years we've had cattle... these have kind of become our babies... right across from the house, spoiled rotten... and this morning our first baby was born (13 more to go)!

Work continues to go good... kind of difficult to get testing done when we've missed more school than we've been there since Christmas break, but we're getting things done... still laughing each and every day!

I still haven't turned off the lit up tractor in the front yard... still enjoying it every night, so what the heck... doesn't look tooooo christmasy... Spencer buddy, hope you are enjoying it every night too!!!

Anyway, an update on our little friends... Levi's MRI showed no change in his spot so they have changed his seizure meds and are going to continue monitoring the spot. Aiden's back surgery went good, home in one week, amazing. Nathan has his MRI today, say an extra prayer!

So, until later, we're hoping for mild weather as the baby calves start coming right and left, only the heifers are due now, the entire herd starts Valentine's Day... (that's always my Valentine gift...)

Thanks for checking in on us!

Saturday, December 30, 2006 11:09 AM CST

HAPPY NEW YEAR and best wishes to all for a happy and healthy 2007!

Rob and I have spent this week being bums... we have slept in, watched movies, played cards and just kind of done whatever we decided to do... of course there was the normal end of year business like paying taxes, finishing bookwork, paying off the "national debt" at the local coop, preg checking a set of cows and doing chores, but in between that we have just been kind of lazy. It is raining today, but the next week is to be mild so maybe it will dry up before we start having baby calves... it will be that time before we know it. Tomorrow night, friends are coming to play cards and have snacks and ring in the new year. I go back to work on Wednesday so my sleeping in will soon come to an end, but it has been nice!

Please keep several of our friends in extra prayers as we being the new year... Nathan (www.caringbridge.org/ne/nathan), our brain tumor buddy in Nebraska is having a repeat MRI early in January to determine if there is new tumor activity; Levi, a little 2 year old that has a very small mass on his brain and will also have a MRI soon to determine what the next step will be and to Aiden, our little friend who is having a very intenisve surgery done on his back/spine in January. I will never understand why children must endure so much!

Hope all have had a good holiday season and made many memories. Memories of Spencer will continue to move us through the next year and many more to come.

To Spencer: I thought of you with love today but that is nothing new, I thought about you yesterday and days before that too. I think of you in silence, I often speak your name, all I have are memories and your picture in a frame. Your memory is my keepsake with which I'll never part, God has you in his keeping, I have you in my heart! Daddy and I love you and miss you more with each passing day!

Rather than new year resolutions, since those never workout anyway, I prefer a new year's motto... "Life should not be a journey to the grave with the intention of arriving safely in an attractive, well preserved body, but rather to skid in sideways, chocolate in one hand, crown & coke in the other, body thoroughly used up, totally worn out and screaming WHOO HOO WHAT A RIDE!" So find something to enjoy each and every day, none of us know what is around the bend!

HAPPY NEW YEAR!!!

Monday, December 18, 2006 2:52 PM CST

Ok, ok, I'm still alive... been a while since I've updated, but trying to get 24 christmas trees decorated and hosting gatherings doesn't leave much time for updating...

the tree is lit... a different flare this year... we brought one of the old tractors up to the yard and I outlined it with rope lights and chasing lights on the wheels then we put spot lights on Spencer's tree... looks really cool... Spencer would have loved the tractor.

In early December, I hosted my department christmas gathering at the house then on Friday night friends joined us for an open house and to see Spencer's lights. Now, four days of work this week, then we'll be off for Christmas Break. Rob's family is coming for Christmas Day then we'll spend Christmas Evening at friends house. Rob and I will also have a lot of farm paperwork to get down to finish out the year.

Rob and I are continuing to do okay, although, Christmastime is always just a little more difficult than the average day... Spencer loved the lights and the decorations (perhaps that is why I feel compelled to have so many trees)... and would have been at that age that Christmas is so very magical... anyway, we will do our best. The cemetery is decorated as well with trees, wreaths, pictures and lights, and we try our best to remember the great times we had with Spencer, which are numerous, and remember that he is in a better place and can see ALL the christmas lights!

To all, we wish a very merry christmas and a happy, healthy 2007! And remember Oprah's statement, "everyone wants to ride with you in the limo, but what you really need is someone to ride in the bus with you when the limo breaks down..." our bus still travels and we thank all who are riding with us!!!

Wednesday, November 22, 2006 12:57 AM CST

HAPPY THANKSGIVING TO ALL!

Rob and I will be spending Thanksgiving with family and friends and enjoying some wonderful weather. I plan on getting the outside decorations done this weekend while I have some extra time off from work.

We truly have a lot to be thankful for this year... harvest was good, our health is good, we have each other, we have many friends and we know that Spencer is no longer suffering and in pain from his cancer! We continue to be thankful for the six wonderful years that we had with him and are thankful for all the memories he left us. We must be thankful for all the little things in our lives... take nothing for granted and enjoy every day!

Happy Thanksgiving...

Rob & Julie

Sunday, November 5, 2006 2:01 PM CST

Time to celebrate... harvest is over!!! Rob finished combining yesterday about noon... thanks to Alfred for bringing his combine to help and to Rick and Ralph & Chis at the Co-op for helping haul grain and help move from field to field... couldn't get it done without great neighbors! Rob is finishing drilling a little more wheat today... really nice day, forcasting in the 70's this week, then very cold, possibly even some snow by next week.

We still have to get the calves all weaned and the cows moved to their winter home, but we're gaining.

The Cameron Dragon Football team ended their season Thursday with a 7-3 record, they were beaten early in the season by 2005 Class 3A State Champion Harrisonville, then in district play they lost to Smithville and Platte County, but beat Savannah 35-0 this past week. Platte County will advance on to playoffs and we'll prepare for Cameron Dragon Basketball. The boys had a great season and have nothing to be ashamed of... hard to come off of an undefeated year last year with several of those seniors advancing on to play college sports.

Congrats to our friend, "Nurse Kelly", who delivered her first child, a little boy, this past week... Kelly took great care of Spencer and I at Children's Mercy. We wish them the best! Hopefully if I get over my cough and crud I'll get to see them before he is walking and talking!

We'll back to housework... much to do... Christmas is right around the corner, having our usual Sunday night supper with friends tonight to celebrate their son's 16th birthday and then I'm sure I'll begin decorating for the holidays soon. Trying to figure out what we are going to do with Spencer's tree this year... working on a new plan... let you know of the progress we make for the tree in upcoming postings.

Until then...

Saturday, October 21, 2006 3:58 PM CDT

Okay, I am finally getting to an update... last Saturday was the Spencer Mattson Fun Farm Day and it turned out to be a wonderful day. The FFA kids did a wonderful job organizing the day with a hay maze, petting zoo, crafts, snacks and storytelling. I'm still not sure how many kids attended, but we had a full house! Thanks to all who contributed to the scholarship fund.

We are getting rain today, Rob has about one more day of combining corn and then several more to finish beans but is getting along good and crops are turning out good for our area.

Our Cameron Dragons got beat last night to Smithville, the first of the three district games. The boys have had a pretty good season this year though.

My job continues to keep me busy but I'm enjoying it a lot. Testing the little ones has been quite interesting.

Well until later... enjoy the pictures above of the Spencer Mattson Fun Farm Day!

Saturday, October 7, 2006 5:17 PM CDT

The combine continues to roll... harvest is going well! Rob switched from corn to beans last weekend, ran beans for a few days (where he wants to drill wheat) and has now gone back to corn. Crops are turning out well, so that makes harvest much more enjoyable.

We traveled to Lafayette in St. Joe last night for the football team, the Cameron Dragons are now 4-1 with a big win over Maryville last week and Lafayette this week. Next week is Chillicothe.

My job continues to be enjoyable. We are very busy with evaluations now so I am working with kids of all ages every week. Francee continues to keep us laughing each and every day!

The FFA kids are getting ready for the 2nd annual Spencer Mattson Fun Farm Day next Saturday. The kids started this activity last year in memory of Spencer and it was wonderful. They have a petting zoo, story telling, crafts, snacks, straw maze, tractor rides, corn and soybean tubs to play in, we show Spencer's favorite farm movies... the works... all about the farm... the kids do a wonderful job and it is such a neat tribute to Spencer. They focus on 2nd grade and younger for their activities. I will set up my table with memotoes of Spencer and many pictures. It will be another one of those "bitter-sweet" days, but a day we enjoyed last year and I'm sure we'll enjoy it again this year. Spencer would have loved it all! Just wish he was here to enjoy it rather than it being in his memory. Today marks 15 months by the way...

I've uploaded some new pictures so check them out... they are of the quilts that Sally (Spencer's daycare) made out of his t-shirts... they are a wonderful way to be able to still wrap up in his things and hold them tight!

Well... time to go check the cows and check in on the combine... Rick is helping haul grain so they have got a lot done today... thanks Rick!

Tuesday, September 26, 2006 8:24 PM CDT

Hi all...

The combine is rolling at the Mattson farm. Rob got started combining corn on Sunday and is getting along well. He finished filling the pig barns on Friday and is over half finished with fall calves, a set of twins were born this weekend, so all is going well on the farm end of things. We have had beautiful weather the past couple of days, hopefully it will continue until harvest is over!

I just returned this evening from spending three days at Tan-Tar-A at the Lake of the Ozarks for Special Ed Administrators Conference... my rear end has sores from sitting, but we had a great time. Six of us went from our district and we met up with a couple of former Cameron Special Ed teachers that are now in other districts for supper. We had a great time... and the meetings weren't too bad either... of course, how much fun can federal regulations be, but at least that wasn't the whole conference. I learned a lot more about some of the new initials/acronyms (all programs have to have initials) that are coming down the pike in the special education world. Of course we found a little time for shopping too!

The Cameron Dragon Football Team is now 3-1 after our win over Benton this past week. This week is Homecoming and we'll take on the Maryville Spoofhouds on Friday night. Football season is proving to be very enjoyable again this year.

This week is another week of remembering as Rob's mom passed away six years ago tomorrow and his dad passed away three years ago the 30th... September 16th also marked the 5 years anniversary of Spencer's diagnosis, so needless to say, we're always glad when September passes!

Spencer buddy, miss you more and more, did a lot of remenising about you and school with Miss Kera and the girls at conference... I'm sure daddy's buddy seat seamed pretty empty once again this year when he got the combine going, but we know you are riding with us! Your butterflies continue to be with us everywhere we go... the football games, the lake, the corn fields and right outside my office window... thanks buddy!

The pool people are coming to close my swimming pool tomorrow, so there goes summer! Oh well, only six months or so til we open it back up! Now on to decorating for Christmas!

Until later...

Friday, September 8, 2006 8:59 AM CDT

We'll another month has passed (14 of them now) doesn't even seem possible but time does move on. I always seem to sleep just a little better under a full moon... Spencer was always amazed with a full moon, would run to the window as it came up each night, so I tend to fix a cup of coffee and spend a little time on the deck under the full moon... then sleep really good! Something to look forward too each month I suppose.

We traveled to Excelsior Springs last week to watch the Cameron Dragons score a 44-14 win. Tonight we play last years 3A Champion Harrisonville... could be a really tough game, but we'll have fun!

I've been trying to work on the wallpaper at my brother's house so we can get him moved soon... I'm not very fast at getting it done, but we're getting there. Rob hasn't got the combine out yet, but I know it is coming soon!

My allergies kicked into high gear this past weekend... ditched the contacts last week, went back to glasses and went to the doctor on Tuesday to get medicine... doing much better now! I am trying real hard to not let it get me down like it did last year when I spent three months trying to get rid of the crud! Hopefully my immune system is a little stronger this year.

My job is going great... it is nice to get up each day and look forward to going to work! Although I have many deadlines and stacks of paper... not the same stress as a classroom,kids, lessonplans and discipline everyday! A change is always good!

So, we are doing good... Rob gets pigs this next week and will get the combine running. He is working on getting his truck/trailer deal finalized so he will have a semi to haul grain this fall... always something!

Until later...

Sunday, August 27, 2006 4:36 PM CDT

Another CPC buddy gained his wings early this morning... caringbridge.org/pa/trey... our thoughts and hearts are with his parents and brother.

Trey was a little boy from Pennsylvania that I've been in touch with for a while now, he declined very quickly and lost his battle this morning. I'm sure Spencer and Gage are welcoming this little guy home... another little boy to run and play!

We have had more rain this week, kind of getting muddy around here (hate to even say that after May/June being so dry)... Rob is starting to get everything ready for harvest, probably be getting time when it dries up. Rob shipped lots of pigs this last week (4AM every morning) and will clean out the barns this next week... not so early in the AM though... new pigs will come soon!

I'm enjoying my new job tremendously... I didn't really realize how much I was ready for a change in pace until this school year has gotten going... I'm not missing the classroom routine at all... it is so nice not to be on a "bell schedule" for everything I do. We are very busy doing paperwork and enrolling new students and will begin doing testing on some this coming week. I do miss seeing my friends at the high school on a regular basis, but as we get going in the testing more, I'll get to be out at the high school more. As much as I miss my summer schedule of floating on my pool, my mental state operates much better back in a normal routine... we laugh a lot at work, that helps greatly too... with Francee to work with, we can't help but laugh!!! I did get to float two afternoons this last week, so I haven't closed up the pool yet!

Spencer buddy, we miss you more and more... every time I walk up and down the halls at the elementary school I think about you... and can only imagine all the havock you would be causing. I see many of your classmates and Mrs. Leeper! We know you are in a better place (you didn't like school anyway)but miss you all the same! Take care of Trey and welcome him home!

Until later...

Monday, August 21, 2006 3:24 PM CDT

OK, the school year is underway and my new job is going good. I am enjoying a change in pace, back to a routine is a good thing as well... not missing the regular classroom schedule though... doing lots of paperwork and scheduling many meetings... very busy with new students! I work with a lady named Francee (whom I worked with many years ago as a Para) and we have a blast working together!!!!!!!!!!!

Rob is getting ready for harvest... it rained again this week, but harvest isn't too far away! We're hoping for good weather and a good harvest!

Football season starts next week... GO DRAGONS!

Sunday, August 13, 2006 2:50 PM CDT

OK, summer is officially coming to an end! We've returned home from the State Fair!

Remember I told you all in the last update it would be a while before I updated again... but we're still alive, haven't melted in the heat YET!

For my birthday, Aug 4, we went to the Royals Ballgame with friends from school then the next evening went to the Hereford House with Rob's sister & husband. On Sunday, we had friends here for supper, so I made my birthday last all weekend just like Rob did!

With all of the extreme heat, I've enjoyed the pool tremendously, however, I started back to work this past Monday so that certainly puts a damper in the floating schedule. I have begun my new job at school this year, being a diagnostician (big title I know) for the district. Bascially I will be doing lots of paperwork and testing for all grade levels in the district. This week we were very busy just getting things organized and enrolling new students. The kids come this next Thursday.

Rob and I went to the Missouri State Fair on Friday and Saturday. I grew up going to the fair, then Rob and I showed livestock for many years at the fair, so summer just isn't over without a trip to the fair and seeing many friends. However, it was a little tougher this year seeing all the little ones showing their animals certainly brought back the memories of the couple of years that Spencer got to show a pig at the fair... thank goodness for those memories though!

The heat has finally broke a little this weekend, thank goodness. Rob shipped pigs several days this past week and has 5 loads scheduled for this coming week... a very hot job when it's 100 degrees (for everyone). We'll empty barns in the next couple of weeks, then be ready for new pigs in early September. Harvest is still 2-3 weeks away, so when we finish pigs it will be on to combining corn and fall calves... never dull! Can't forget Cameron Dragon Football... it's right around the corner as well!

Saturday, July 22, 2006 7:22 AM CDT

Well we've made it past the big milestone... the one year angel anniversary followed quickly by Spencer's 7th birthday. We decorated Spencer's grave for his angel anniversary... thanks to all who added things in his memory. For Spencer's birthday, Rob and I took a little road trip through Southwest Iowa, ate at the noodle place (Olive Garden) and had Spencer's favorite meal and dessert. It seems like I'm always emotionally ready for the "big" days but then experience "let down" a few days after... so this past week has been some sad days (more than usual), with the help of my "Spencer bear" and his blanket, we get through them. We continue to experience the good days and the not so good days but really the "not so good" comes more in moments rather than days. They are kind of like the tide, come in and go out! Doesn't seem possible that it has been one year, but time does move on!

With all the heat, Rob hasn't been out doing anymore than he has to, but did bale some hay this week, but I have been enjoying the pool tremendously! Of course getting past the milestone dates only brings me to realize that my summer is nearly over and that I'll be returning to work very soon (probably doesn't help the not so good moments)... bring on more sunshine so I can enjoy the last couple of weeks floating!

We had rain last night, so with all the 100 days it was very welcome. The crops are looking good. We've had more rain in July than we had in May & June together. Hopefully harvest will be a good one! Rob will start shipping pigs soon, I will return to work the first part of August and we'll make our annual voyage to the Missouri State Fair... then summer is over! Seems like it has gone fast!

WOW, that was a long post, don't be surprised if it a few weeks before I post again... going to enjoy my final days of vacation floating in the pool and watching the butterflies then it's back to work! ENJOY SUMMER!

Wednesday, July 12, 2006 7:25 AM CDT

HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY DEAR SPENCER, HAPPY BIRTHDAY TO YOU!

Today you are turning seven,
we can only wonder what birthdays are like in heaven.
No matter what, we know you are free,
running around like little boys should be.

You came in this world early,
You left this world early,
to neither we have control.
You taught us all so much,
to love, cherish and live each day!

For nearly six years you were our gift
providing us with laughs, smiles and many memories.
We cherish each and every one!

Yesterday is history, tomorrow a mystery, today is a gift that is why we call it the present!

Rob and I celebrated Spencer's birthday last night by having supper at Olive Garden (the noodle place) and having Spencer's favorite dessert, Black Tie Mouse Cake.

Check out the photos as I have added some new ones, remembering Spencer's short life.

Wednesday, July 12, 2006 7:25 AM CDT

Friday, July 7, 2006 7:11 AM CDT

ONE YEAR AGO TODAY
WE SAID OUR FINAL GOOD-BYE
WE SENT YOU ON YOUR WAY
ON YOUR RAINBOW IN THE SKY

NOT A DAY PASSES BY
WITHOUT THINKING OF YOU
SOMEDAYS WE LAUGH, SOMEDAYS WE CRY
YOUR MEMORIES PULL US THROUGH

YOU ARE OUR HERO UP ABOVE
MOMMY'S SWEETIE, DADDY'S BUDDY
WE SEND YOU ALL OUR LOVE!

Thinking of you today, just like everyday. It doesn't seem possible that it has been one year, but time does move on. Although some say time heals everything, I'm not yet convinced of that, but time does ease the pain. Pain comes in doses now rather than every moment of every day. We remember more the good times rather than the bad times. The "spencerisms" are never far from any conversation, Spencer left his mark and memories on everyone he was around. Thanks to everyone who continue to "ride the bus with us" because our limo is still broken down!

Monday, July 3, 2006 7:56 PM CDT

In Loving Memory of
Spencer Mattson
7-12-1999 ~ 7-7-2005

God saw you were getting tired
And a cure was not to be
So he put his arms around you
And whispered, come to Me.
With tearful eyes we watched you suffer
And saw you fade away
Although we loved you dearly,
We could not make you stay.
A golden heart stopped beating
Two precious eyes to rest
God broke our hearts to prove to us
He only takes the BEST!

God knew you had to leave us,
But you did not go alone
For part of us went with you
the day he took you home.
To some you are forgotten,
to some a part of the past.
But to those who loved and lost you,
Your memory will always last.

Love you all the way to heaven buddy!
Mom & Dad

Even though each day is difficult to face without Spencer's smiling face, it only takes going back through the journal entries to one year ago to remind us what DIFFICULT really was... watching Spencer suffer and be in pain and struggle for each and every day. We know he is in a better place and he continues to send us the strength we need to endure each day. Just as Spencer told us over and over, "it will be okay"... and it is... not a great life, but okay none the less. We find ways to enjoy the memories we have and treasure each and every one of them. Have a safe and happy 4th and remember Independence Day is a day to celebrate freedom and Spencer is free!

Wednesday, June 7, 2006 4:32 PM CDT

Another milestone today, 11 months since Spencer passed... unbelievable that it has been that long ago... seems like we've relived the months leading up one year ago many times recently, and I'm sure we'll relive them many more times in the next few months to come, but we're making it... one day at a time, just like always! And I must admit, as much as we miss him and as hard as it is to face each day without him, it is easier knowing where he is and that he is free from pain than where we were one year ago, watching him slowing slip away, loosing a little more of him each and every day!

Rob is getting hay put up, good weather for that, but some rain would be really nice! The pool is finally getting warm and I'm enjoying just floating, looking at they sky, watching my butterfly flutter around in the yard... thanks buddy! The blue sky and white puffy clouds have been beautiful! Went to the dentist today, first time in 14 years, and fortunately only have one small cavity in a wisdom tooth (my first cavity, not to bad a couple months shy of turning 37...!) Those who know me well know how much I hate the dentist. I do have to have a root canal done to save a front tooth that got damaged when I was a kid and I still have to have them cleaned, but atleast not to many things to have done!

Buddy, we hope you enjoyed the red tractor whirly gig while it was at your grave... and we hope who ever took it off your grave gets enjoyment from it as well... we're keeping our eyes out for it! Your lantern still shines each and every night! Love you!

Until later, we're praying for rain!

Wednesday, May 31, 2006 9:30 PM CDT

We got some much needed rain today, although spotty. We got a little over an inch at our house, but at a farm two miles away, hardly enough to lay the dust... we'll be thankful for what we got though. Rob will have a little break from the hay field.

Friday night, Rob and I went to the cemetery and decorated for memorial day... a difficult evening but we made it. Spencer always loved putting flowers on Granny & Papa's grave and asked more than once who would put flowers on our grave... so decorating the graves is very important to us... the tractor wirly-gig looked great and thanks to all our friends and family who added decorations to his grave for the weekend! A nice tribute! We enjoyed the weekend with friends cooking out.

I've finished up at school this week, have my classroom cleaned out and packed up and have moved into my office spaces. Now I'm really ready for warm weather and spending time floating on the pool! I've been in a couple of times this past week.

Until later...

Tuesday, May 23, 2006 5:27 AM CDT

Summer is almost here! School got out this past Friday and the weekend was filled with graduation activities. I still work this week to finish up the year but then I'm done until August! Rob finished planting beans on Friday, mowed hay in the afternoon and baled it up yesterday. He has more down for baling today. He hoped mowing hay would make it rain, perhaps we'll get a little this evening. The pool water is still quite cold, but this week's weather is much much warmer, hopefully it will get warm soon so I can float!

Memorial Day will be tough we know, but we'll get through it. I have a red tractor whirly-gig to put at Spencer's grave for Memorial Day... we'll make it some evening this week to take care of the flowers. Tractor pulls start this weekend as well, so we'll have something else to go and do!

For all who have lost loved ones, this is the weekend to remember them (like we ever forget). Wishes to everyone for a safe weekend of traveling and a perfect kickoff to summer!

Until later...

Sunday, April 30, 2006 11:09 AM CDT

A VERY SPECIAL THANK YOU TO THE CAMERON FFA CHAPTER! Last night was the annual FFA banquet. The chapter made the evening very special for Rob and I by awarding one of the honorary membership awards in memory of Spencer. In addition, they had a FFA jacket made with his name on it, so we now have a Blue & Gold jacket with Spencer's name. Also, a huge thank you to Cody, Megan & Jennifer for presenting the Spencer Mattson Memorial Scholarships for me... I knew it would be too emotional of a night for me to do the presentations... they did an awesome job... a picture of them and Spencer from last year's banquest is in the photo album. As soon as I have pictures from this year's banquet and scholarship recipients, I'll post! Once again, thanks to the kids and the advisors for making last night such a memorable tribute to Spencer.

We have finally received some welcome rain... the pool is full, and only three weeks of school remain... Rob will start planting beans when it dries up... and oh my is the yard going to need to be mowed! Love spring...

Until later...I've changed the photo album, remembering one year ago!

Sunday, April 23, 2006 12:23 AM CDT

Hello all... hope everyone has enjoyed some of this wonderful Spring weather we've had for a couple of weeks. Rob finished planting corn this week and Friday night we finished filling the hog barns once again. I've mowed the yard twice already and the pool is almost full as well! Things are moving ahead... a little rain would be welcome!

Weather over Spring Break and Easter was wonderful... got a good sunburn mowing the yard last week! I went to Children's Mercy over break and thoroughly enjoyed seeing the nurses in the unit, the clinic and got to see Dr. Emami, it was good to see them all again, they were such a part of our lives for nearly four years! The unit was full, sad as it is that there is an ever revolving number of kids fighting cancer. At least, we know that Spencer, and all the other angels, are free from that fight, pain and anguish. One sure thing, a visit back to the hospital does put everything back into perspective and gives us the subtle reminder that Spencer truly is in a better place. Amazing how a little trip to the hospital can be such a life altering visit... reminding us all how precious life is and how quickly life can change. After spending nearly four years there and three easter's, it was nice to know I was only there for a visit.

My brother and his boys spent Easter with us, we thought Rob would be in the field, but he broke down on Saturday afternoon, so he got to be home as well. The boys enjoyed playing with the toys at our house and are so sweet about asking if they can play with Spencer's things. We took them to visit the neighbor's new baby lambs in the afternoon since it was too windy on our hill for an easter egg hunt. They seemed to have a good time.

Only four weeks of school remaining, the kids have pretty much already checked out! We will finish on May 19th!

Until later...

Tuesday, April 11, 2006 7:21 PM CDT

SPRING is officially here! Rob began planting corn today! The weather is beautiful (although windy) and the forcast for the next week is great... especially since beginning at 1:00 tomorrow I am off work until next Wednesday... the first time we have had "spring break" in its entirety since I started teaching! Looking forward to some days off!

I am going to visit at Children's Mercy over the break... looking forward to seeing many of our nurse friends. It was one year ago that Spencer and I came home from our last inpatient stay at CMH... a year ago that he quit being able to walk and the big signals that things were headed down hill began... another milestone passed on Friday (nine whole months without him)... doesn't even seem possible, but even scarrier is the fact that one year will be here before we know it! Each day we pass is one more day, doesn't mean we don't miss him (sometimes more and more) but it does mean we made it through another day! It seems like that is just the way we are meant to live... one day at a time!

I'm looking forward to winding up the school year and enjoying the summer... I am planning on putting up a pool so I can spend the summer relaxing, floating and soaking up sun.... my favorite things. We've made it to some more baseball games and tonight I went to Sara's soccer game... don't really understand soccer, but I was there for moral support. Rob's fighting a head cold, finishes shipping pigs early in the morning and will get new ones in on Friday... never dull around here, we are just like the energizer bunny and keep going and going!

Buddy, we miss you more and more, this was your favorite time of the year when you could get out and ride your 4-wheeler and go to the field with dad... saw a butterfly in the backyard this weekend, thanks! Remembering all the good times you had hunting easter eggs during transplant at the hospital...we know you're near each and every day... keep sending us signals... yes the stool lid keeps falling and we know it is you! Keep sending us strength for each day and we'll keep doing our best to put it to good use!

Until later... HAPPY EASTER TO ALL!!!!

Saturday, April 1, 2006 3:40 PM CST

HAPPY APRIL FOOLS DAY! 70 Degrees today, sunny and little wind... NO FOOLIN!! A perfect spring day and I've been outside all day getting SUN!!!! I've cleaned out the "peeing boy" fountain today and got it running and have just enjoyed being out! Last night, Rob and I went to the Dragon Baseball game where the boys beat Lathrop
19-1... looking like baseball is going to be quite enjoyable as well. The last two weeks have seemed really long as I suffered from "sports withdraw"... no basketball and the baseball was rained out, only NASCAR on Sunday's.

Rob continues to have baby calves, we have gotten some of them moved to the other pasture so it is easier to see when we have new ones now... they are loving this green grass and warm weather as well.

Only 30 more days of school... yyyiipppphhhheeee... not sure who is more ready, me or the kids. We do MAP testing this next week then we are actually going to get spring break... I think this is the first year since I've taught that we have been able to keep our full spring break... just hoping we have good weather then...

I'm sure Rob will be getting anxious to get the corn planter ready if this weather stays nice... he has been shipping lots of pigs lately, will have the barns empty soon, then new ones! Everything continues to move ahead and we try our best to do the same, continuing to face each and every day and do the best we can!

As always, thanks for continuing to check on us and follow our journey through the ups and downs of life!

Sunday, March 19, 2006 12:00 PM CST

CONGRATS TO THE CAMERON DRAGONS BOYS BASKETBALL TEAM FOR WINNING 3RD PLACE IN THE 3A SHOWME SHOWDOWN THIS WEEKEND!

Kathy, Garrett & I spent Friday night and Saturday in Columbia enjoying the boys basketball games. They played Cardinal Ritter late on Friday night and lost to a 3 point shot at the buzzer... a heart breaker! They came back strong for the 9:15 game last night to defeat Mt. Vernon for the 3rd place 3A title... 1st place in Football, 1st place in Wrestling, 3rd place in Basketball... what a year for the Cameron Dragons... and we've enjoyed it every step of the way!!! Rob and Rodney stayed home to take care of the cows and baby calves... wrong time of the year for them to take off and be gone...

The forecast for today and tomorrow is LOTS of snow... hope they are wrong... we'll just have to wait and see!

Until later...

Monday, March 6, 2006 8:06 PM CST

Thanks Heather for creating such an adorable bear... I look so forward to getting it in the mail.

Congrats to the Cameron Dragon Boys Basketball team for winning the District 16 Tournament... they continue on their jouney to Columbia.

More and more baby calves coming and nice weather to go with it, had twins yesterday, the momma only claimed one so we took the other one to the neighbors to join the bottle calves!

I found out this past week that I have a new job for next year... I'll still be working for the Cameron School District, but will be part of a diagnostic team that will be doing the testing for the special ed department, so out of a classroom, looking forward to a change.

Tomorrow marks 8 months without Spencer... doesn't seem possible that it has been that long, but time moves on. We miss him each and every day but wouldn't want to see him suffer again for anything! So many things remind us of him, he always enjoyed the baby calves so much! His pictures and memories provide us with comfort and we know he's with us every where we go! Little things continue to happen that let us know he is near! Keep it up buddy!

Memories
Distance makes us far apart and darkens our today,
We have to keep remembering you're just a thought away,
When the world is too confusing, and times are hard to bear,
We pull your precious memories, your bright smile from the air.
If we sometimes drift into a lonely state of mind,
We gather up the memories of the days we left behind.
And though you are not beside us,
We have your memory in our hearts
And draw upon the warmth and love
That lives while we're apart! Love you buddy!

Until later... GO DRAGONS!!!!!!!!!!

Sunday, February 26, 2006 11:02 AM CST

It's been a little while since an update so thought I better let everyone know we're still in existance here...

We're having lots and lots of baby calves born, keeping Rob busy morning and night feeding and checking cows... Spencer, we have one picked out that we know you would have picked as your favorite... a black white face calf with lots of white on his legs... a real cutie!

We are still making it to ballgames, have traveled from Maryville to Pleasant Hill watching the boys in the past couple of weeks, didn't make it to Macon on Thursday though. This next week starts District Playoffs at Hamilton, so more basketball on the horizon. The Cameron Dragon Wrestlers won their State Title last weekend, so now we're ready to see how the basketball boys contend.

I traveled to Jefferson City on Friday for a conference so had a day away from school... back to the grindstone tomorrow. Yesterday, we went to Kansas City for the Western Farm Show and enjoyed lunch at the Olive Garden.

Our weather has been really nice for calving ( a little cold last weekend, but it is to be in the 60's this upcoming week). Ready for green grass though... it was nice to see some wheat fields greening up down towards Jeff City, that means it is getting closer!!! I still haven't made it to the tanning beds yet, but am going to try to fit that into my weeks routine soon... can't handle this pale skin any more!

Eight months without Spencer will soon be on our doorstep, doesn't seem even remotely possible that he has been gone that long, time does move on despite everything! The above picture was taken just about one year ago (2/21/05) as we began the "steroid puff"... don't miss that stuff but sure miss the smile... forever in our hearts and memories!

Until later...

Tuesday, February 7, 2006 5:48 AM CST

Friends, it is today that marks seven months... in so many ways it seems like forever, in other ways, like only yesterday. I had a friend ask me recently "when does it quit feeling like a dream..." that my friend is still up for grabs... somedays I can still sit in my recliner and just know that Spencer is going to come walking down that hallway, or days that I still turn to drive by the babysitters, not even realizing it until I get in front of her house, just because that is the way I always went home from work... but days continue to come and go and Spencer's smile is everywhere we look...

I've removed the Christmas decorations from Spencer's headstone and replaced them with some bright springy flowers, and can't wait for Spring to see just what Spencer decides to send for little signals... the rainbow on Thursday was BEATUTIFUL... thanks buddy!

We have started having calves so that gives Rob a little more to keep up with now, and a sign that life does come full circle and yet moves on!

We traveled to Platte City last night to watch the Cameron Dragons defeat the Pirates... they are having a great season and we enjoy basketball just about as much as football! We had friends on Sunday for the Super Bowl and celebrated a Steeler Victory!

Have to admit, I'm ready for Spring... hate the cold weather (and we've had a really unususal January) but very tired of the dead looking trees, grass, etc... ready for some green and Spring... I think this means it is time to hit the tanning beds soon... nothing like a little intense heat to pep up the winter blues!!!! School is pretty much routine, got to get off to a meeting quite soon, but the seniors have started the countdown with 60 some days left in this year... amazing! Tomorrow night is the last night of this series of grad classes, then a short break before we start our "next to last class"... got my letter from William Woods that I'm on schedule to be done this Summer... sounds great to me!!!

Until later,

Enjoy the little things in life, for one day you will look back and realize they were the big things!!!!

Saturday, January 21, 2006 3:23 PM CST

I've talked to so many people recently that have told me they still check Spencer's webpage almost daily... THANK YOU, it is so nice to see that counter number continue to climb and to read entries in the guestbook! Although updates aren't nearly as frequent as in the past, it is so nice to know that Spencer, Rob and I are still thought of by so many and that so many continue to follow our journey. The journey definately did not end with Spencer's death, his death only marked another bump (perhaps a mountain) in our road, another curve in our path.

I've spent some time thinking back to one year ago. The picture above was taken January 30, 2005. It was last January, the 12th to be exact, that our road took a sharp curve with the bad MRI. It was one year ago this week that the bus driver had to carry Spencer in to Sally's as his legs would not work well enough for him to walk. This incident led to the beginning of decadron, the steroid to relieve his cranial pressure and the beginning of more chemo. Spencer rallied with the decadron and the chemo regained his ability to walk and kept on smiling, that smile we remember so vividly and miss so much. It is certainly that smile, that drive and determination that kept us going then and keeps us going today. We look at the pictures, the memories live on and provide us with the strength to continue on our path. Despite the bumps, the mountains, the curves, we strive to live each day just as Spencer did, with a smile and determination to handle anything we face! Some of you may remember my motto for 2005: "Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, chocolate in one hand, crown & coke in the other, body thoroughly used up, totally worn out and screaming WHOO HOOO WHAT A RIDE!"

Well Spencer certainly took us on a ride and did enjoy every day of his life to the fullest extent skidding one way then another, with his blanket in one hand, his nosey in the other, and atleast mom and dad totally worn out... perhaps my motto truly is one to live by... what a ride the past year has been!

Enjoy the little things in life, for one day you too will look back and realize they were the big things!

Until I update again... thanks to all who keep traveling on our path!

Sunday, January 15, 2006 9:52 AM CST

Another week has passed... we traveled to Kearney on Monday and Thursday to watch the Cameron Dragon's. They came up with a victory on Monday and a loss on Thursday, but went on to beat Chillicothe on Saturday night to win 3rd place in the Kearney Tournament. We missed the Saturday night game.

On Saturday, we were blessed with very nice weather as we attended the funeral service for Connie Martin, a true celebration of her life. Prayers to her family as they begin the healing process and the new leg of their journey.

Early on Saturday morning, we received news that our hired-hands wife, Joetta Dailey, passed away. She has been battling a liver disease for sometime now. Services are still pending, our thoughts and prayers are with Claude and his family.

In the midst of all the sadness, we celebrated a 21st birthday last night with our friends, Happy Birthday Heath - life does go on!

Back to work tomorrow, we are using tomorrow as a make-up day for one of the snow days prior to christmas break.

Until later... never take ANYTHING for granted!

Monday, January 9, 2006 8:02 AM CST

Prayers go to our friend, Karen Grimes, and all her extended family on the loss of her sister, Connie Martin on Saturday afternoon. Connie had battled a brain tumor since Spring. Her services will be a visitation/memorial in Columbia MO on Thursday evening, followed by the funeral to be held at Hamilton MO on Saturday at 1:00 at the Federated Church with visitation being held from 12:00 - 1:00 prior to the service. Burial will be at Kingston MO, Connie's hometown. We wish for peace and strength to them all as they endure this week.

This is birthday week in our family, my brother's is today, my mom's is Wednesday and by nephew Alex's is the 15th, so we gathered at my mom's on Saturday for the birthday dinner. The kids had a good time playing and we enjoyed lunch.

Not much new this week, the Cameron Dragon boy's basketball will play in the Kearney tournament this week, so perhaps we'll travel there to watch them sometime.

Until later, never take a day for granted!

Saturday, January 7, 2006 11:01 AM CST

5:00 PM UPDATE: Connie Martin, Karen Grimes' sister, lost her battle with her brain tumor earlier this afternoon. Arrangements are pending at this time. Connie leaves behind her husband, two children, both school age, her mom & dad and 3 sisters & families. Our hearts go out to all of them and pray that they be given strength and peace during the days ahead!

HAPPY NEW YEAR TO ALL!

Today marks another milestone on our road... today marks six months since Spencer received his wings... at 3:00 this morning, I woke up and sat straight up in bed... first time I've done that in a long long time, but unlike times before, I got Spencer's blanket, put my finger in the corner pocket (which is where his finger would have always been), curled up and went right back to sleep... and didn't wake again until after 7:00... another milestone crossed!

Rob and I went to St. Joe last night and enjoyed supper at the Frederick Inn. While we were having supper, we got a phone call that we had a bull out by our old house. I called my brother, he went and watched it until we could get home and make sure it was indeed our bull before we put it in with the cows. We put him in, he was out twice yesterday! This morning, we moved the bulls home and into the corral. That took us some time this morning to get the cows all sorted and then get the bulls to quit fighting long enough to get them in a pen, in the trailer, and moved, but we got it done!

Talked with our friends' this morning, Karen's sister (Connie) continues to hang on but is in the final stages of her brain tumor. She has been under hospice for a couple of weeks now. We offer our thoughts and prayers to their families as they move through this stage of their journey, may they be granted strength and peace!

Survived our first week back to school, seemed like a long week but I was ready to go back and return to my routine. The week after christmas hit me harder than christmas itself... I guess I was prepared for Christmas, just not all the days after being at home alone, however, we got through them, probably a good step in the grieving process. One day at a time... that's how we live! And take NOTHING for granted!

HAPPY NEW YEAR TO ALL!

Monday, December 26, 2005 11:05 PM CST

We made it through Christmas, and in pretty good shape... not without some sad, lonely moments, but in general, we're doing okay, staying busy and remembering the "Spencerism's" like "John Deere's cost too much", "Monday's are not nice" and "Got a pretty good fire goin" and of course, "It will be okay mom"!

We traveled to my sister's on Saturday to have Christmas with my Dad's family then made a stop on the way home and helped the Secret Santa's Elves deliver Christmas to a family, a nice addition to our Christmas Eve. This is the group that planted Spencer's tree and has come back to help us light it each year, so it is an honor to be asked to join the Elves to help deliver a memorable Christmas to another family. On Sunday, I hosted Rob's family, my mom and stepdad and brother at our house for lunch and gifts, then we spent the evening at friends house having Christmas with them and their family.

Today was the traditional "ham & bean" day, must do something with the leftovers, and the Hahn's joined us for supper and to watch one of Rob's new movies...

So, as I said, we are doing okay... we have at least made another milestone of getting through our first Christmas without Spencer. We have shared many memories with our friends during the holidays, Spencer certainly made his mark in many people's hearts during his short time here on this earth. It doesn't seem possible that we are quickly approaching six months since he passed away, but time does move on! Although Christmas will never be the same without him, we know he is looking down on us all, enjoying the lights and keeping us in his watch... a true Christmas Angel!

Now for the dreaded "year end" week... I've spent time today working on farm books and getting things ready to finalize our year. I still think that either the year end or Christmas should come at a different time of the year. However, one plus to teaching school, I have this week off to help Rob get things done here at the end of the year. This week always seems to go so fast, and I'm sure this year will be no different. The Cameron Dragon's play in the William Jewell Holiday Tournament this week, so we'll probably venture down there for some basketball this week... can't go without our sports! Then next week, it is back to the grindstone...

Hope everyone had a Very Merry Christmas and our best wishes to all for a Happy, Healthy 2006!

Wednesday, December 21, 2005 9:08 AM CST

The tree is lit! Thanks to our wonderful friends who came to help us light "Spencer's Tree"... Spence... hope you like it!

Rob and I are doing pretty good as the Christmas Season nears. We are in the process of shopping for another family with a child with cancer in hopes that they can have a special christmas and memories to treasure forever, just like we do with the tree lighting and Spencer's Tree.

We will host Christmas Dinner at our house, gives me something to keep busy with on Christmas Day...

Prayers to all of those still fighting this cancer battle! Best wishes to all of those that have recently received stable MRI's... the best christmas present a brain tumor patient can receive!

This poem was sent on the guestbook, but I decided to include it here for the Christmas post as I think it is a perfect triube to Spencer:

My First Christmas in Heaven

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'm spending Christmas,
With Jesus Christ this year.

I hear the many Christmas songs,
That people hold so dear,
But the sounds of music don'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.
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 send 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 heavenly father said to do,
For I can't count the blessings of love,
He has for each of you.

So have a Merry Christmas
And wipe away that tear
Remember, I'm spending Christmas,
With Jesus Christ this year.

Merry Christmas to all and best wishes for a happy, healthy and peaceful New Year!

Saturday, December 17, 2005 6:21 PM CST

Finals are over and Christmas Break is here... hooorrraayy!

I went to the doctor last week after fighting a horrible cough for sometime now only to find out that I have pneumonia, so I've been on antibiotics and steroids all week and am finally feeling human once again! Didn't really feel bad with the crud, just didn't have much energy! Thank goodness I'm finally better!

We hosted my Special Ed Dept Christmas Party on Tuesday afternoon, it was nice to have friends in our home. Last night, we attended visitation for a neighbor who was killed in a farm accident this week, prayers be with his family as they deal with this tragedy. We also went to the boys basketball game last night, another victory for the Dragons! This weekend we will spend time with friends!

Spencer, keep an eye on your tree, miracles do happen!

Now to finish getting ready for the holidays, host friends and family and make it through the end of the year healthy!

If you haven't gone to the guestbook, please do, a poem was sent that is just a perfect tribute to Spencer! Thanks!

MERRY CHRISTMAS TO ALL!

Friday, December 9, 2005 10:39 AM CST

SNOW, SNOW, SNOW... home again today... we had about 10 inches of snow around here, helped Rob yesterday and today feed hay to the cattle. A nice long weekend... how wonderful! Now I can finish getting things ready for the holidays. I am hosting my Special Ed Department Christmas Party at our house on Tuesday after school. We are still visiting with Santa as to when the tree lighting is going to be, sometime the week of the 19th then I'll have Christmas Day dinner at our house.

This week marked 5 months since Spencer's passing, in some ways it seems like only yesterday and in so many others, it seems like forever ago since we heard his voice and saw his sparkling eyes! However, to know he is spending Christmas, and everyday, pain free and cancer free is a relief and a blessing!

I ask once again for extra prayers for Connie, (our friend's sister) as she has had new tumor growth and has turned to hospice care. I pray for her family to be given the strength to endure the days ahead of them and peace that Connie will be free from her cancer as well. I can only hope and pray that her children and family will feel the same comfort, peace and relief that I have felt since Spencer's passing... yes the pain of missing him is huge, but at the same time a feeling of peace comes over me each and every time I think of him, to know he is not suffering and that I will see him again.

Happy Holidays,

Saturday, December 3, 2005 9:50 PM CST

We have just returned home from seeing our niece and the Cameron High School Drama department perform Tom Sawyer... they did a wonderful job on their musical performance.

Last night, we went to the opening game of the Cameron Dragon Boys Basketball season where they opened with a big win over Richmond... Go Dragons!

From one season to the next, we keep rolling along!

I've been in contact with Santa... we are working on details for the tree lighting, probably going to be a little more low keyed this year, but a tribute none the less.

Rob & I and Rod & Kathy spent this morning moving cows, finally have them all moved to their winter home, one where we won't have to chop ice... good thing with the forecast the way it is, seems like we've moved cows for several weeks now, but they are home! Thanks guys!

Tomorrow, must get some housework done and finish decorating for christmas... the trees are looking nice and it has been good for me to work on them a little at a time. Christmas has always been my favorite time of the year and I was so afraid that my fun might not be there this year, but sometimes I think it is even more fun... every light is a true tribute as Spencer loved the lights and we always had to go around the house turning on all the trees... so more lights it is, each one reminding me of him and his twinkling eyes!

Hope everyone is gearing up for this holiday season and keeping warm in this frigid weather.

Happy Holidays

Sunday, November 27, 2005 8:30 AM CST

CONGRATULATIONS TO THE CAMERON DRAGONS (14-0) AS THEY DEFEATED THE MONTGOMERY COUNTY WILDCATS 64-18 TO TAKE THE CLASS 2 CHAMPIONSHIP FOOTBALL TITLE! WHAT A SEASON!

We had a great time traveling to St. Louis Thursday/Friday to watch the football game. We enjoyed the trip with friends, did a little sight seeing and watched a great game! Thanks Dragons for a great season... now on to basketball this next week... GO DRAGONS!

Today, we will have Thanksgiving with my mom, brother & sister and families. We know it will be very different without Spencer, but as I said last week, we are thankful that he is no longer suffering and in pain. For the first time since before he turned two, he will get to spend the holiday season healthy, happy and smiling on us all!

I spent yesterday putting up the outside christmas decorations, except for the big tree. We aren't sure yet what we are doing to light the tree this year, but I have ordered a neat star, so hopefully we'll get something figured out when it comes. I have most of the little trees up and decorated in the house. I still have the mantle and stairway to do which I want to get done this weekend, leaving me the two big trees to get done next weekend. Decorating has been easier than I expected, not without tears, but not as gutwrenching as I thought it might be. Spencer always loved the lights and the trees, so in memory of him, I continue decorating and making it as memorable as possible. I have added an angel tree this year and pictures of each christmas past... it is very comforting to have a tribute just for Spencer. Rob and I went to the cemetery on Tuesday and decorated Spencer's grave as well as Rob's parents. I'll get pictures posted of Spencer's stone soon as well as pictures from past christmas'.

Please say an extra prayer for Connie, our friend's sister who is also fighting a brain tumor. Despite her new treatment, she seems to be declining. Pray for peace and strength to be given to them as they continue in this journey!

Thanks to all who continue to check on us and follow us in our journey. Remember, we must find joy in every journey and be thankful along the way. Although we don't understand why any of us are given this journey to travel, somewhere there is a reason, we must continue to believe!

Happy Holidays

Monday, November 21, 2005 6:40 PM CST

As we approach turkey day we want to wish all a very Happy Thanksgiving. This will be our first holiday without our Spencer, but we are still finding many things to be thankful for.

We are thankful that Spencer is no longer suffering and in pain, fighting his battle that he fought so valiantly. We are thankful for the nearly six years that he was a part of our lives, the smiles, the memories, the "Spencerism's". One thing for certain, never a dull moment with Spencer near. We are thankful for our friends and our family... without them this journey would have been even more difficult, perhaps impossible. We are thankful for the community in which we live, the people that have said prayers, sent cards, gifts, brought meals, donated to the memorial funds, the teachers and staff at my school, the FFA for the benefits and for the Fun Farm Day a few weeks ago, what a true sign that Spencer's memory lives on, and the list goes on, THANK YOU.

And, THANKS to the Cameron Dragon's for a wonderful football season, 13-0 as we head to St. Louis for the Show-Me Bowl this weekend... the Dragon's have certainly provided us with something to do this fall and we have enjoyed every game tremendously.

As for Christmas, we are working on getting the house decorated, Spencer always enjoyed the lights and the trees even more than the presents, so we're trying to get everything up and decorated. Spencer, I hope you can see all my trees and enjoy every flickering light... each one reminds me of you, always the shining light in our life! Although our light will not be shining as bright this year without you, we are trying our best to make it a Christmas to remember, just as you have made each one in our past, full of food, fun and friends... and a special tree and display in memory of you! Love you buddy and thanks for the memories!

Happy Thanksgiving to all... and GO DRAGONS!

Monday, November 21, 2005 6:40 PM CST

Saturday, November 12, 2005 4:38 PM CST

A HUGE THANK YOU TO THE CAMERON FFA AND THE CAMERON COMMUNITY FOR THE GREAT SUCCESS OF THE SPENCER MATTSON FUN FARM DAY! IT IS SO HEARTWARMING TO KNOW THAT SPENCER'S MEMORIES TRULY LIVE ON!

The FFA students did a great job organizing the event in memory of Spencer and to give kids a chance to experience the part of Spencer's life he loved the most... the farm. We had over 200 kids and nearly 200 parents sign in today and take part in crafts, a petting zoo, a hay maze, farm movies, puppet shows, tractor races and playing in corn... they had an wonderful time! The kids had door prizes and snacks (animal crackers & milk) and I had a table display with Spencer's pictures showing his wonderful, unforgetable smile and his favorite toys. Donations were collected to benefit the Spencer Mattson Scholarship Fund which will be given to a Senior FFA member in the spring.

Once again, thanks to all who are continuing to help us keep his memory alive! He would have loved everything about today!

Thursday, November 10, 2005 6:07 AM CST

Another Thursday, (we've made it past the four month mark) it's almost Friday and with football last night my does it seem like a messed up week, but GO DRAGONS!!!! The Dragon's won their sectional game last night against Brookfield and will now advance to play Lawson next week in the quarterfinal game... we hoping and praying we're on the way to St. Louis!

School continues to be crazy... can't seem to get the year settled into routine, students come, students go, meetings, more students than we've ever seen, paperwork, paperwork, paperwork, still trying to figure out how in the heck I did this job the past four years... guess I didn't worry about the little stuff and the good Lord knew I needed to be at work all the time this year!

Cancer continues to attack those around us... prayers to Joy, a mother and day care provider, as she undergoes another surgery soon to determine the extent of her cancer that was discovered last week after an appendicitis (sp?) attack and having it removed. Also prayers to Connie, our friends sister, who just received news that her brain tumor is once again growing and is inoperable, they are trying a new chemo treatment in hopes to stop the growth. One day at a time my friends and remember, find joy in every journey!

Spencer, our world seems very empty without you, but we know you are in a better place, free from pain, running and playing and smiling on us all... and watching football with the best view in the house! As Kenny Chesney's new song says, we still have HOPE, because we know we will see you again someday... keep sending us your strength, we'll put it to use each day... not a day goes by that we don't think of you!

The Spencerism's continue... last night when talking to a friend who just had brain surgery at Children's Mercy we remembered about the time when Dr. Hornig told us Spencer might not be able to talk due to the depth of the surgery, just a few moments later, Crazy Ole' Barb (the nurse practioner) came out laughing and said, "Spencer is doing fine, he just told us he doesn't like Sprite and he wants Coke!"... Buddy, hope you're getting all the coke you want!

Until later...

Thursday, November 3, 2005 6:25 AM CST

Friends, I've lost track of weeks (a good thing I think) but since it is Thursday I know that it has been some number of weeks ago that Spencer was set free from his pain and tumors! Approaching four months quickly!

As I posted earlier this week, life does move in cycles and will continue to do just that. Rob finished harvest last night (HUGE THANKS TO JERALD & HIS DAD FOR BRINGING THEIR COMBINE & TRUCKS TO HELP FINISH). So the life of this year's crops has come full circle. Rob is shipping pigs again this morning, the one's we unloaded the night Spencer passed away, once again another life come full circle. Today Rob is also going to plant wheat - the beginning of another life cycle... so perhaps that is just how we are viewing life right now... just part of a big circle in which we are doing our best to make the most of - thanks to friends, memories of Spencer and the strength he continues to send our way.

Another thanks to friends as we celebrated Halloween on Monday night having supper and laughing about Spencerism's that we all remembered! Monday night also included a visit to the funeral home to comfort other friends who lost their mother to cancer as well... our thoughts and prayers continue to be with them as they begin moving on in this cycle of life!

To Spencer... I saw the BIG butterfly yesterday afternoon when I was in the yard... thanks for one more memory, however, cold weather is coming... we know you'll find another creative way to let us know you are with us.

And last but not least, GO DRAGONS!!! Tonight is the last game of district play with state playoffs beginning next week, so off to football tonight, going to be another beautiful day today ... thanks Spence for sending some beautiful weather to allow dad to relieve a little stress by finishing up the farmwork... always taking care of us!

Until later...

Remember, in the end, it's not the years in your life that count, it's the life in your years! Make each one count!

Sunday, October 30, 2005 1:35 PM CST

Not a lot of new info to update, but don't want everyone to think we've dropped off the earth...

the Dragons continue their undefeated season and we continue to enjoy watching them!

Rob has begun shipping pigs once again (we unloaded these the night after Spencer passed away) so life does move forward and everything moves in a cycle... we are scheduled to get more pigs the week of Thanksgiving, so between now and then Rob will be busy with the pigs. He is trying to finish harvest... thanks to friends who have pulled in with their rig this weekend to help out... without our friends there would certainly be little reason to keep on trudging through this journey! Our friends have been our lifesavers... always there to pick us up (literally at times) and help us move through each and every day!

I had parent conferences on Thursday evening and Friday morning. My sister's little one, Katie, has been at Children's Mercy for nearly two weeks, so I ran down on Friday afternoon to stay with her while Rhonda went to Luke's school program, then back home to go to St. Joe to the football game. Hopefully Katie will get home soon, she is fighting a virus that gave her horrible mouth sores resulting in dehydration and not being able to eat or drink! Returning to Children's Mercy twice this week certainly made me remember how much I don't miss that trip every week, but it also reminded me of the many many trips we did make and the special times Spencer and I had there, along with all his nurses... many of whom I got to see during my visits this week... although I must say, for Spencer, they were good memories, he loved the nurses and never minded the hospital stays! So for me, no bad memories, just memories! Memories we'll cherish forever!

Spencer, you are always in our hearts and on our minds... Cousin Brett came to ride in the combine yesterday, he reminded us so much of you... riding along with his questions and nearly falling asleep on my lap! I have put together a table display for the "Spencer Mattson Farm Day" that the FFA Chapter is sponsoring on Nov. 12th... looking forward to a fun day and we know you'll be watching and guiding us, just like every day! Keep sending us your strength and we'll keep doing our best to put it to good use and live each day the best we can! Getting too cold for the butterflies, but we know you will be sending us more signs of your presence with us! Love you and miss you little buddy!!!

Sunday, October 16, 2005 5:25 PM CDT

CONGRATS TO THE DRAGONS FOR THEIR VICTORY FRIDAY NIGHT OVER SMITHVILLE FOR HOMECOMING... NOW 7-0 AND MEC CHAMPS! Rob and I and friends enjoyed the football game!

We finished combining corn on Saturday and finished hauling it to town today... Spencer was flying along with us... harvest and riding in the combine was always a fun time for him, today, a butterfly sat on the hood of the pickup or flew around us almost all day while we were in and out of the field to haul grain... right there with us buddy!

Rob will switch to combining soybeans tomorrow and hopefully the weather will hold this week for a good week of combining.

Spencer... we continue to miss you, more and more it seems... so many things remind us of you! However, we know you are watching over us and giving us the strength to get through each day, making the best of it, just like you always did! I am going to start decorating christmas trees soon, have more ornaments and a new string of lights for the summer santa tree that you liked so much and... I have a special one planned just for you too!!! Keep up your good work at helping us get through each day! Love you buddy!

Saturday, October 8, 2005 8:41 AM CDT

CONGRATS TO THE CAMERON DRAGONS FOR DEFEATING THE PLATTE COUNTY PIRATES LAST NIGHT HUGE! Now only one undefeated team in the MEC!!! What a fun game!!!!

Two posts in three short days... haven't done that for a while but a little "Spencerism" story came to mind while I was in the shower and I wanted to share it with you all...

This whole butterfly thing... at the cemetery and ever since, butterflies seem to be where ever I go... beautiful ones, in our yard, while I'm driving, outside my window at school, even at the MU football game... just ever so often I look up and see a butterfuly, so I have to believe they are a sign from Spencer... he was always amazed with butterflies and at least we know he is much like his mommy and won't like the cold, but he will get to be where it is warm in the winter!!!

We'll when Spencer started pre-school immediately following his first round of radiation, Miss Kara tried so hard to make everything "farm related" so Spencer would like school. She read a story about a catepillar and it turning into a butterfly... Spencer listened ever so intently with a puzzled look on his face... at the end of the story he said, "Miss Kara, catepillars don't turn in to butterflies. Bob drives a catepillar and it pushes dirt!"... so I must believe that Spencer is still trying to prove his point... no catepillars don't, Spencer's do!

And by the way, a butterfly that he made in kindergarten when the were doing the letter "b" is one of the few school projects that he came home and couldn't wait to show me and tell me about... I do believe things happen for a reason!

Always in our hearts, minds and memories... Spencerism's!

Thursday, October 6, 2005 8:45 PM CDT

Okay friends, I think this is a good positive step... I've lost track of how many weeks ago today that Spencer received his wings... I know it will be three months tomorrow though... thoughts are never far from the front of my mind, but the fact that I've lost track of weeks is a good thing (I think)!

According to the way I feel about going to work each morning, it should be close to Christmas Break... however, homecoming is next week so I guess we'll have to get past that, parent conferences & Thanksgiving before Christmas Break... one step at a time... I just keep telling myself that!!! It continues to be absolutely crazy, kind of like the first week of school over and over! It will get better! (I hope and pray) I am beginning to get some of my meetings behind me and a few files off my desk so that is progress!!!

Tomorrow night is football!! It is finally getting cool here instead of needing shorts & t shirts for football games! Rob got back in the field today after our huge rain on Sunday morning that tried to wash everything away! Last weekend was all football... Friday night, the Dragons, Saturday, the Missou Tigers (thanks to teacher friends Dave & Jennifer for taking us along), Sunday the Chiefs... what a pathetic game! We'll hope our Dragons mark up another victory tomorrow night!

Life continues... Spencer keeps us in line and everything reminds of us him! Still seeing butterflies... even at the stadium in Columbia... Spencer is with us there is no doubt!!!

Got to get the pizza out of the oven, Rob will be in from the field soon!!! Until next week remember...

THE LIFE GIVEN US BY NATURE IS SHORT. BUT THE MEMORY OF A WELL-SPENT LIFE IS ETERNAL.

Spencer's memories will be with us forever!

Say an extra prayer for a CPC friend Jacob... they are fighting insurance to get approved for transplant... visit his page at caringbridge.org/visit/jacobt
and a prayer for our friend's sister Connie who is also fighting a brain tumor and waiting on MRI results!

Thursday, September 29, 2005 9:20 AM CDT

Didn't get a post in last week... I was under the weather! Went to the doctor last Monday with sinitis, larengitis, bronchitis and fluid in one lung... amazing I made it through four years of Spencer's treatments and then bammm... it hit! A shot, $100 worth of pills and I'm finally feeling human again! Missed the football game on Friday night, but the Dragons posted another win anyway.

Rob has been combining corn, a slow process but it is coming along... he changed heads and combined some soybeans, they actually seem like they might be an average crop this year!

Spencer, we miss you a lot! Combining just isn't the same without you keeping dad in line with what he needs to get done each day, but he's doing okay! We continue to see lots of butterflies and they remind us of you!

This week is another week of memorial dates for our family: Rob's mom passed away 5 years ago this past Tuesday and his dad passed away 2 years ago tomorrow... we're always glad when September passes, October is usually better!

We have a weekend of football planned so that will keep us busy! Busy is always good! School continues to be crazy, more new students, feeling like I'm buried with paperwork, but someday I will rise above that too!

Thanks for checking on us, leaving posts, to those who have visited Spencer's grave and continue to keep us in your thoughts and prayers... Spencer's memories guide us through every day!

Thursday, September 15, 2005 10:23 AM CDT

Four years ago today, Spencer was admitted to Heartland Hospital in St. Joseph and underwent a CT scan which revealed his brain tumor. We were immediately transferred to Children's Mercy where Spencer underwent his first of several surgeries on September 16th. Little did we know what journey we had embarked upon. Ten weeks ago today Spencer took his last breath, boarded his rainbow and was set free from his pain, discomfort and continous medical care. Our journey still continues, we have traveled over many bumps and hills, celebrated good times, cried through bad times, and faced our next challenge head on... we continue to face each and every day head on. Spencer's memories are with us continously... we miss his smiles, his hugs and his quick wit, but are relieved to know he is free of pain. He continues to give us the strength to handle each day just like he did... living each one the best we can!

Rob has started harvest, not going to wear the trucks out hauling grain to town, but at least he is busy now. I rode with him a lot on Sunday to fill the buddy seat... I'm sure I probably wasn't a very good replacement for Spencer, but at least he wasn't alone.

School continues to be crazy, I'm just not sure how I made it through the past four years of doctors visits, hospital stays, sub plans, etc... however, I didn't have nearly as many kids as I have this year either... everything happens for a reason, that I do believe!

Thanks to all who continue to follow our journey, post notes on the guestbook, to our friends who are faithful at keeping us busy, and to those who have visited Spencer's gravesite and left momentos... our wishes continue to be answered as Spencer's memories are being kept alive.

Thursday, September 8, 2005 10:40 AM CDT

Two months yesterday, nine weeks today, either way it seems like forever ago that we were able to hug our little guy, but the days come and the days go and we are doing okay! The funeral home got the headstone set yesterday, how appropriate on the two month anniversary of his death. There are pictures in the photo album, we are very pleased with it and know that Spencer would be too! I went and decorated it after school yesterday.

School continues to be crazy with many new students this year, but it is certainly keeping me busy. Rob is getting closer to going to the field, maybe this next week. He mowed down hay this week and is trying to get that put up, of course it is raining this morning which will make hay a little tough.

We had a good holiday weekend spending time with friends and at home mowing and getting some things done there that hadn't been done since I started back to work (like vacuming & dusting).

Spencer, we continue to miss you huge. I'm sure that when dad gets in the combine there will sure be an empty buddy seat next to him... perhaps it will help if I go ride with him afterschool... just like you did! But we know, you are riding right along everywhere we go! Sending you hugs & kisses all the way to heaven!!!

Thursday, September 1, 2005 6:21 AM CDT

Well August has passed like a flash, we know fall will be coming soon (hate the cold weather) but perhaps Rob will be able to get the combine going soon... at least it will be something to keep him busy for a little while, although he won't wear the trucks out hauling grain to town, unfortunately!

It has been 8 weeks today since Spencer boarded his rainbow, took his last peaceful breath and joined the ranks of Angels in heaven... some days it seems like only yesterday, some days it seems life forever ago since we heard his little voice say "luv you all the way to heaven"... we do buddy, we do! Each and every day we think about you, we talk about you, we laugh and we cry... thanks for helping us through each day and for all the memories along the way!

We'll be spending part of this weekend with friends once again... HUGE thanks to them for finding ways to keep us going! Football season starts this week, so perhaps that will give us something to do as well!

School continues to be crazy but is becoming a bit more routine... I'm getting out of there much earlier in the afternoons which makes it better for us at home. I don't have grad class for a couple of weeks so that is a nice break as well!

Once again, a huge thanks to those who continue to follow our journey, a journey that really never ends, but one must find joy in every journey. The pain too will never end, but for the most part is bearable! Compared to the pain of seeing him suffer, not be able to walk, and not be able to talk, the pain of not seeing him is dull, but ever present! Thanks to everyone along our sides that continue to say a prayer for us and help us get through each and every day!

Spencer... miss you huge, keeping sending us strength, you're doing great! You're memories are wonderful and your pictures on my wall and desk keep your smile in front of me all the time! THANKS!

Friday, August 26, 2005 4:32 PM CDT

TGIF! I made it through a full week of school... barely! I do believe it is going to be a long year of school, but one thing is for certain, it is going to keep me busy! I've asked myself several times this week how I have survived the beginning of school for the past four years on top of doctors appointments, surgeries, chemo, etc... we just do what we have to do! Our enrollments have been huge this year so much added chaos to the beginning of the year! The kids have really been pretty good so far, there are just so many of them!

We have finally had rain, probably too late for the crops but atleast the yard is green again! Now I get to mow on the weekends once again! Hadn't mowed since July 3rd until last weekend. Rob might even get to bale some more hay this year! We are having lots of baby calves again, so that is giving Rob something to do.

Spencer... we continue to miss you huge, such an empty spot in our lives,we never stop thinking about you and your funny little things you would say! Mondays are still definately not nice! We got the fountain up and running in the front of the house... looks just like you! I'm sure you would have had fun playing in it (and probably peeing in it too!) We miss you and love you all the way to heaven!

Until next week... Spence... keep sending us our strength we need for each and every day... you're doing a great job!

Thursday, August 18, 2005 7:31 AM CDT

Six weeks ago Spencer sighed his breath of relief and went on his rainbow to heaven... six weeks later I begin my second day of school, Rob has returned from his trip to St. Louis, we've been to the state fair, we've laughed, we've cried, we've recalled many memeories and continue to do that...

Mornings getting ready for work are quite different with only myself to get out the door... I still find it difficult to not drive my normal route by Spencer's school to drop him off and to not turn to go to the babysitters as I leave school each evening, but for the first week, I didn't wake at 3:15 and relive that morning... I slept until the alarm went off! Spencer is giving me the strength to get through each and every day!

Hopefully his headstone will be in place within the next few weeks and then perhaps Rob will feel more comfortable going to the cemetary with me.

Spencer, we continue to miss you huge! Your hugs, your smiles, your comments... but we feel them and hear them and I know you laughed with me when dad left the door open on the pickup and the cow ran into it! (haha)

Until next week... Spencer please send me a little extra strength to get through this first week of school... busy, busy, busy, crazy, crazy, crazy... and send dad a little extra to get ready for this dismal harvest... miss you buddy and love you huge!

Saturday, August 13, 2005 7:06 PM CDT

We have returned home from our annual trip to the Missouri State Fair... we cut it a day short due to continuous rain and fair grounds just aren't a great place in the rain, but we are thankful for the rain! Friday was extremely hot on the fair grounds until the storm came in on Friday evening and then it cooled off... they had between 2 and 4 inches on Friday... today we watched the friends kids show in the pig show, they all did very well... then we headed out just as the storm hit again today... we drove in rain the entire way home, so nice to see rain the rain gauge!

The fair was quite different without Spencer and the stroller, but we commented several times that he would have been miserable as hot as it was and then in the rain... we visited with friends that we only see at the fair and shared lots of memories of Spencer showing his pigs the past couple of years as well as many other memories that we have.. we had a good time and knew he was watching over us, probably laughing at us as we were melting in the heat!

Although I hate to think of summer coming to an end, the state fair always brings me to that thought... Monday I will return to work for inservice and then the kids coming on Wednesday... I'll try to be ready! The cool weather we arrived home to certainly sends us the signal as Rob said, soon it will be time to wear coats again... now that is one disgusting thought... but he is right, it will be here before we know it.

It has been five weeks, well a little over because I didn't get a post in on Thursday, we miss Spencer huge but know he is watching us and guiding us! We're doing our best to live like he would want us to and do the things he would want us to do! Spencer, your memories take us through each and every day...thanks! We told and heard some stories this weekend that we hadn't thought about in a while... you certainly left your mark on everyone! One thing for sure, when Monday comes I'll be remembering "Monday's are not nice"... and just think... you don't have to go to school anymore... you didn't need to anyway, you taught us more than we could have ever taught you! We miss you and love you!

Until next week... love, hugs & kisses all the way to heaven!

Thursday, August 4, 2005 7:55 AM CDT

Four weeks today, doesn't seem possible but the reality of Spencer being gone has become real... accepting that he isn't going to just wake up from a nap or me pick him up at Sally's is happening. The memories of him looking so miserable those last few weeks are beginning to fade (A REAL GOOD THING) but that also means the good memories of his smile, laugh and quick-wit are more predominate (ANOTHER GOOD THING), but allow us to miss him even more! All of this coupled with today being my birthday, my last week of summer vacation, and starting another grad class last night... now that is reason for anyone to shed a few tears! I start back to work on Monday, however the kids don't come until Aug 17th... we will get a trip to the State Fair in before the kids come and then I'll be able to say that summer is officially over... not until the trip to the fair... I believe I've only missed two fairs in my entire life, the year I was born and the year Spencer was born... summer just isn't summer without the State Fair!

I've always maintained that "normalcy" is the best tool for coping and healing... all through Spencer's illness, we tried our best to maintain as much normalcy in our lives as we could... and we continue to do that, so perhaps getting back in the routine of work will be a very good thing. We still haven't gotten any rain, so harvest will be pretty short this year, unfortunately. However, we learned a long time ago that we can't control mother nature so we just have to take what she hands out!

We have spent a few evenings this week working on putting in a water pond in the front of our house for the little peeing boy statue to go with... it is looking real nice... big thanks to friends for the statue and for helping me put the water pond in... certainly reminds me of Spencer and I know he would have loved to play in the pond!

Rob and I continue to enjoy time with our friends and are staying busy with projects. I believe we are both moving through the grieving process in a positive direction. Some days are not easy, no day is without thoughts of Spencer, but we are remembering the goodtimes and letting the memories of Spencer's strength during the bad times get us through the not so good days! We have taken a few road trips in different directions, but we haven't seen any crops that look worse than ours in any direction... perhaps we need to drive further! We continue to live life the best we can, making the best of each day! Remember to live happy one must find joy in every journey, no matter what the journey!

As Eleanor Roosevelt said, "You must do the thing you think you cannot do." (no matter how difficult or how impossible it may seem) On Monday of this week, my day had just seemed to be in the dumps, as Spencer always said, "Monday's are not nice" then I read my emails from the support group and read of a mother whose first born was born 3 days before Spencer and passed away in 2002 from a brain tumor, her husband then passed away in 2003 from lung cancer and now her second born has been diagnosed with a brain tumor...I took a deep breath, said a little prayer for her and my day suddenly looked brighter... remember, when you are down in the dumps, look around and look up, somewhere there is a worse situation if we look for it and allow ourselves to see it!

Spencer, you worked so hard to prepare us and I believe you did, but we still miss you greatly! You gave us six months notice of you going to heaven and ended each day with your little voice saying "Luv you all the way to heaven"... we do little buddy!!! You're strength and memories get us through each and every day! We love you and miss you but are so relieved that you are free from your fight... you fought hard and you fought strong and gave us beautiful memories for almost six years!

Until next week...

Thursday, July 28, 2005 7:48 AM CDT

Three weeks have passed, seems like forever ago... there are good days and not so good days, but that is how it will be. On good days we are out and about, but don't think for one minute we're not thinking about our Spencer, he is never far from my thought or heart! On bad days, we just get through, I find it most comforting to go to the cemetery, take Spencer a balloon and spend some time there with him.

I've been working at school off and on getting our classroom ready. I had inservice training two days this week and survived that. Rob and I are spending time with friends and doing things we enjoy doing, fishing, driving around, been to a volleyball game, etc. Spencer's memories are calming and relaxing, once I get beyond the last few weeks of baggage... I don't miss the baggage, but the smiles, laughs and quick-wit comments we miss greatly, unfortunately those have been gone for many months now. However, the baggage memories certainly remind us quickly that he is in a better place and free from all that! (A comforting thought as well!)

Overall, I think we are doing very well and are living which is what Spencer would want us do! He never felt sorry for himself, nor would he want us sitting around moping and feeling sorry for ourselves. Spencer's life may have been short, but it was well lived and enjoyed.

"The only way to live is to accept each minute as an unrepeatable miracle, which is exactly what it is: a miracle and unrepeatable" Storm Jameson

SPENCER WAS OUR MIRACLE!

Thursday, July 21, 2005 7:51 AM CDT

Another milestone reached at the Mattson house... two weeks since Spencer received his wings. Remember we have always taken things one step at a time and considered little things big steps, that continues to be the way. Little things like the full moon the past couple of nights send emotions flooding as Spencer always loved seeing the full moon, but we know he can even see it better from his view now!

Rob and I are doing okay, we are sad, we miss Spencer tremendously, but we are living and must go on living, that is what Spencer would insist. There are emotional ups and downs. Please don't think that if we are having a good day and are out and about that our grief is over, it will never be over, but in time we believe we will have a new sense of normal, complete with all the wonderful memories that Spencer helped us make. Throughout Spencer's journey there have been good days and bad days, days to celebrate and days to grieve, we live them all and Spencer taught us to live them to their fullest, we must continue! As Abe Lincoln said, "In the end, it's not the years in your life that count, it's the life in your years!"

A huge thanks to all for the messages on this website, the outpouring of cards and messages and tokens of memories. And to our friends that continue the journey with us - you all are priceless! As Oprah said, "there is always a lot of people that want to take the limo with you, but what you really need is people who will take the bus with you when the limo breaks down." The rides are full of memories and the bus is still traveling!

Saturday, July 16, 2005 7:20 AM CDT

It has been 10 days since Spencer passed away, now free from his tumor, pain and medicines! Although we miss him greatly, to know he is free is such a relief!

Rob and I spent a few days away, driving through farm country of Illinois, Wisconsin and Iowa. It was very different to be away, but nice to just have some time together. Corn certainly looks better up north than it does here, Spence, if you could send some rain it would be really great!

I've been back to the cemetery twice as that seems to be where I need to go to shed tears and spend time with Spence. We will get his stone ordered this next week and I got a solar light to place in the vase on the stone so he can have his night light. Our friends have been priceless and continue to be by our sides, just where they have been through this entire journey! They have all gone together to get me a little boy fountain statue with the little boy peeing... just like Spence was always running out the front door to do (the joys of farm life)! I look forward to finding the perfect spot in my lawn for that memory! We have several projects planned to help us with the memories!

Summer has flown by, I return to work in just three short weeks. I am moving into a different classroom and should be able to start moving into it next week so that will give me something else to focus on and stay busy with, kids will be coming in mid-August... not very far away! However, busy is good... throughout Spencer's illness I always tried to maintain normalcy as much as possible, we established a new level of "normal" that included hospital stays, medicine, treatments, MRI's etc, now it is time to establish yet another "normal" and we will with Spencer guiding every step of the way, running, laughing, playing and most of all smiling down on us!

Spencer, we miss you sweetie but know you are in good hands with Granny & Papa!

Monday, July 11, 2005 6:10 AM CDT

Friends, it has been four days and a few hours since Spencer took his last breath and words can't even express the flood of emotions and people that have surrounded us. However, one word can... RELIEF... odd I know, but the weight that was lifted when Spencer took his sigh is undescribable. To know that he doesn't have to take medicine any more, have IV poles, wait for the next MRI, etc. and that he is running free, playing and getting to be a kid is such a relief.

Spencer went to heaven very peacefully. His breathing was labored for about an hour and a half then just slowed down until it stopped with a very delightful, pleasent sigh. We miss him greatly, but know he is in a better place and we will be with him again.

The visitation and funeral were perfect. We had hundreds of people visit during the days. His service included the following songs: "Lord I Hope This Day Is Good"; "Angels Among Us"; "If Heaven"; "You'll Be There" as well as the video that I had made recounting his life which included "Let Them Be Little"; "When Somebody Loves You"; "Thank God for Kids" and "Where Were You When the World Stopped Turning". The day was perfect. At the cemetery we set off balloons since Spencer believed we get to heaven on a rainbow. The balloons all sped off in one big bunch... a beautiful sight! We had a huge gathering back here at the house for a bar-b-que and friends stayed with us late into the evening.

Although not the day I wanted for sure, it turned out to be everything I wanted it to be! A huge thanks to everyone who has helped us through this journey and made the service the best tribute to his life ever!

As for Rob and I, we are doing pretty good... missing the little things about Spencer, but laughing about the times we had with him. We know rough days will be ahead, but they've been behind us as well. We have so many memories that are wonderful and didn't want to see him continue in the condition that he was in... as hard as it is to pray for your child to be taken to heaven, it was better than praying for him to remain like he was, in pain and discomfort. He is watching over us and will always and forever be in our hearts!

Thursday, July 7, 2005 10:18 PM CDT

What a day, Spencer awoke me at 3:00 this morning, gained his wings at 4:45 and the rest of the day has been a whirlwind of picking up, cleaning, trip to town, pick out cemetery plots, finalize funeral plans, rearrange the fridge, etc... a huge thanks to my dear friends who have spent the day keeping me on track...

Arrangements are:
Visitation Sat July 9 6:00 - 8:00
Funeral Sun July 10 2:00
Poland Thompson Funeral Home - Cameron MO
Burial Cameron Memory Gardens cemetery (we were able to purchase plots very near Rob's parents)

Memorials have been established to
Children's Mercy Hospital Hem/Onc Unit or
Cameron Comfort Care Hospice

As of now, Rob & I are doing as well as we could be, trying to find the positives of him passing so peacefully and now being in no pain. Pigs will arrive at midnight tonight, so we'll be headed to the pig barns before too long to unload semi's... something to keep us busy I presume!

Thanks for the calls, emails, messages, food, etc...

Julie

"Lots of people want to ride with you in the limo, but what you want is someone who will take the bus with you when the limo breaks down." Oprah Winfrey

I've got many people on the bus with me... thanks!

Thursday, July 7, 2005 5:21 AM CDT

Spencer earned his wings about 4:45 AM this morning. He went very peacefully with his daddy and I at his side. He is now free from his pain, suffering and fighting of his tumor. I'll post more when I have arrangements.

"We can't change the direction of the wind, but we can adjust our sails."... Spencer taught us this over and over!

May he rest in peace, run & play like all 5 year olds should! (One week shy of his 6th birthday!)

Wednesday, July 6, 2005 6:13 AM CDT

12:15 PM UPDATE

Spencer began passing urine past his catheter mid morning, so to our surprise, his kidneys haven't shut completely down, his catheter was just stopped up... hospice came out and replaced it, so we'll see how he does... however, he isn't wanting to take much by mouth other than his meds.

Spencer continues to hang on. His breathing is more labored now and he's had no urine output for over 24 hours, but he continues to fight this battle. He is still somewhat responsive, still takes his medicine by mouth and is comforted by lipbalm and lotion. He needs his pain meds a little more frequently now (every 4 hours), but that really seems to help keep him comfy! Praying for a peaceful passing and that he earn his wings soon!

Thanks for checking on us!

Tuesday, July 5, 2005 7:03 AM CDT

Another day at the Mattson house, we're finally up and going this morning. Spencer continues to fight, remaining stable this morning. We celebrated 4th of July last night with friends here for a cookout and a few fireworks, we can see the ones in town and all around very good from our hill, so we had a very nice evening! Spencer was responsive from time to time last night. He has had his meds this morning, is still swallowing okay at this time. Who knows what timeframe Spencer has in mind, but he certainly continues his battle with a vengence!

Praying that Spencer remains comfortable and content and receives his wings soon!

Thanks for checking on us!

Monday, July 4, 2005 4:16 AM CDT

It is early Monday morning, Rob has gone to unload pigs (never a dull moment around here)! Spencer continues to hang on, resting comfortably. His breathing has been a bit more labored in the night, his apnea continues, his kidney functions have seemed to level off over the past 24 hours. He looks so peaceful, resting, still responding to our touch and voices, still drinking a little juice every now and then. He had a little more chocolate milk yesterday and knew it was different from his juice as he answered with a "yes". The night before he also seemed to enjoy me putting lotion on his legs and arms as again he answered with a very delightful "yes". The little things for comfort!

Independence Day, a day to celebrate freedom! We're praying for Spencer's freedom from this disease. May he earn his wings soon, soar high in the sky and be pain free, running and playing like every child should be doing on the 4th of July!

Thanks for checking on us, sending us prayers, keeping us in your thoughts and for the notes in the guestbook!

Sunday, July 3, 2005 7:46 AM CDT

Spencer had another stable night. His breathing remains about the same, shallow with many episodes of apnea. His kidney functions are decreasing. He remains very comfortable, still is responding to us and is still drinking some juice. Independence Day is a day to celebrate freedom and we pray that Spencer will soon be free from this tumor and free to run and play like little boys should be doing.

Have a safe and happy 4th of July. Thanks for the prayers and notes!

Saturday, July 2, 2005 7:55 AM CDT

Just getting up and going here at the Mattson house. Spencer's night was okay, he had breating treatments at 10:00 pm and at 4:00 am, he seemed to rest comfortably with those. His episodes of apnea continue with 15 - 20 second gaps between breaths. His congestion is very rattly in his upper lungs, but he is alert this morning and has had some drinks of juice. It will be time for more breathing treatments soon and we'll see how today goes! Independence Day is a time to celebrate freedom, we pray for Spencer to receive his wings soon and peacefully and be painfree and struggle free from this battle! Thanks for checking in on us and prayers to all for a safe and happy 4th of July!

Friday, July 1, 2005 11:18 AM CDT

Another day, another crisis... at 8:00 this morning Spencer had his medicine and was doing okay... at 8:30 he was gasping for air then quit breathing... after a short time, he took a breath again. Rob came home, hospice came, Spencer had several more episodes of apnea and seizures then we got him calmed down with a breathing treatment and medicine. He is resting very comfortable now and breathing shallow but steady once again. Just another test run! Thanks for checking on us!

Thursday, June 30, 2005 7:41 AM CDT

Spencer continues to rest comfortably. He did eat almost two bowls of oatmeal yesterday and drank really good. His congestion is still very rattly, but continues to have no fevers. Thanks for checking on us and have a safe and happy holiday weekend!

Wednesday, June 29, 2005 6:52 AM CDT

Another good night... no fever, stable breathing... I moved him around a couple of times in the night, but he seemed to be doing okay. He went the afternoon and evening without pain meds and was pretty alert for a while yesterday evening... he drank about 8 oz. of crangrape juice and ate some strawberry fluff (jello & coolwhip)last night. Who knows what today will bring... thanks for checking on us!

Tuesday, June 28, 2005 5:37 AM CDT

Spencer made it through the night fine. He has not spiked any fever and his breathing remains about the same. Yesterday evening, we got him on the floor, washed his hair and gave him a sponge bath... he looks like he should feel much better now... after the fever yesterday morning I thought he needed that! He still isn't drinking much, but we did put a foley in yesterday evening to drain his bladder and he still has urine production. Thanks to all our friends and family who endured yesterdays test run with us... Spencer just thought we needed a little trial run!

One more positive for this morning, there is rain on the horizon... hopefully it moves on this way! We haven't had rain since early June and the corn crop could sure use a drink as we move into tasseling time! We must find positives wherever we can!

We can't change the wind, but we can adjust our sails and keep sailing!

Monday, June 27, 2005 3:18 PM CDT

What a day... at 3:30 AM Spencer was resting comfortably, at 5:30 AM he was struggling to get air, his legs were ashy gray and had a fever of 102.8... I gave his tylenol & pain meds and called hospice... after a few hours Spencer began to stabilize. Now this afternoon, he is much better, his color is normal again and his breathing, although shallow, is steady and not labored now. So for now, hospice has gone home, Spencer is stable and Rob's baling hay. One never knows what a day has in store around here.

Sunday, June 26, 2005 7:26 PM CDT

Spencer's congestion in his lungs seems about the same, maybe a little looser today, however his alertness has been much better today, he has answered some questions again for me and has drank pretty good today. This afternoon he said "chocolate milk", not the greatest thing when you have congestion, but I thought about it for a while and decided, what the heck... he hasn't said anything buy "yeah" for three days, if he can get "chocolate milk" out than he deserves chocolate milk, don't really think it will make much difference in the congestion anyway... so he drank his chocolate milk and said "yeah" in a most relieved voice... he hadn't had any milk for about a week now... so that is where we are at, if Spencer can ask for it, than someway I'll try to get it for him... last weekend it was watermelon. The hospice nurse will be out in the morning to evaluate him, we'll see what she thinks then. Praying that Spencer remains comfortable and doesn't have to suffer!

Saturday, June 25, 2005 4:17 PM CDT

Well another day, not the same old story... Spencer woke this morning with a fever 99.9, I went to give him motrin and he didn't want to open his mouth or swallow... finally got the meds down him and got him to drink better... brought the fever right down, but his chest was really working hard and his cough didn't sound good at all... called hospice... nurse came this afternoon to check out his lungs... back of lungs sound crackly, upper right lung has crud and lower left lung isn't moving much air, we have started him on antibiotics, expectorant and keeping him on motrin, hopefully he'll be better soon... he has ate two pop sickles for me today and has drank a glass of juice, we're working on pedialyte now, he will drink it, but doesn't really like it, however, I'm not sure he really knows the difference at this point. He hasn't had anymore fever today. I'll update if anything changes...

Friday, June 24, 2005 4:50 PM CDT

Like most every post for the past few, Spencer remains status quo. His vitals have remained stable this week, he continues to eat some and drink. His moments of being alert are limited, but he seems comfortable and content. He is sleeping most of the time, but sleeping very comfortably at night, so I'm getting some sleep too... not used to that! Rob is busy with hay and shipping pigs and I'm finding all kinds of things to do in the house that hasn't been done since we moved here 6 years ago. Each day is much the same!

Yesterday is history, tomorrow a mystery, today is a gift which is why we call it the present! Give your kids a hug each day!

Tuesday, June 21, 2005 7:44 AM CDT

Spencer's blood pressure was stable yesterday so we're still on the medicine. He ate two bowls of oatmeal yesterday, some apple cobbler and a popsickle. He is drinking his cranapple juice very well. He seemed more alert yesterday off and on throughout the day. We'll see how today goes!

Yesterday is history, tomorrow a mystery, today is a gift, that is why we call it the present.

Thanks for checking on us!

Monday, June 20, 2005 5:51 AM CDT

Not much new to report other than "same ole same ole"... We had a pretty good weekend. Spencer is still about the same, other than we added oxygen on Saturday as he got quite frazzled by the time we got him in and out of the bathtub, the oxygen really helped calm him down and he's had it pretty much since noon Saturday. I took him off for a while yesterday and he does fine so long as he is resting, but if I move him around for anything, he gets pretty upset and then recovers well with the oxygen. He ate oatmeal and watermelon this weekend, is drinking his cranberry-apple juice very well and body functions seem to be pretty normal. Hospice will come this morning to check his blood pressure, etc. so we'll see how things are today. He has had times of being pretty alert, asking for watermelon and answering questions. He seems to be very comfortable, leg cramps have lessened greatly. So until I have more to report... thanks for checking in on us!

Friday, June 17, 2005 9:36 AM CDT

Spencer had a good day yesterday, ate two bowls of oatmeal and only had limited "spacing off" spells. He was alert at various points in the day and answered questions we asked. This monring, he awoke fine, no fever, and took his meds like a trooper. He is also finally having BM's on his own, without the aide of an enema. He has been alert this morning so we're hoping for another good day! His eyes remain basically fixed, although he blinks, we don't believe he is seeing, but he still hears and understands us and can still ask for oatmeal and chocolate milk. His pain meds seem to be working keeping him comfortable all the time. His blood pressure was normal yesterday, heart rate still elevated, but improved. Hospice will be back on Monday to check him again unless I need them before then. Thanks for checking on us!

Thursday, June 16, 2005 7:32 AM CDT

Today is starting off a better day. Spencer woke right up this morning and is responsive, at least answering my questions with a yes or no. He took all of his meds without any problems, he did have a low grade fever again, 99.3, but took his motrin and it is already lower. He ate some applesauce after we were done with his meds. So, for now, a better day.

Prayers to the Edwards family as they endure Gage's funeral today in Alliance NE.

Wednesday, June 15, 2005 10:26 AM CDT

<<<<<<<<<< 12:30 UDPATE >>>>>>>>>>
Spencer is doing better, he is much more alert, he ate a popsickle and a few bites of macaroni & cheese. He is answering questions again. He is working on drinking his miralax now.

Spencer is starting to decline more. I called hospice this morning as he was pretty much unresponsive, his heart rate was racing and his breating was difficult at times. Last night, his eyes became fixed and didn't respond to light. This morning they were twitching and rolling back and forth, still not responding to light. Hospice came, Spencer had a low grade fever, I was able to get his blood pressure meds and his pain meds down this morning, then he decided he wouldn't open his mouth anymore... we did get motrin and keppra down him a little later and he drank some juice for us. The motrin took his fever down quickly and then he responded a little more, and his eyes slowed down. His heart rate is still high, but not pounding like it was early this morning. His blood pressure was 172/78 on Monday and today it was 136/68... so perhaps it is the natural process of the heart racing and the blood pressure dropping, only time will tell. We are just praying that he remains comfortable and not in pain for whatever time we have left. Hospice is checking on getting him a muscle relaxant to help with the leg cramps and suppositories of tylenol & motrin in case he gets to where he won't take things by mouth. So, we continue, one day at a time!!!

Prayers continue with Gage's family as they prepare for his funeral tomorrow in Alliance NE. Gage's family was one of the first families we met after Spencer was diagnosed.

Thanks for checking on us and thanks for the prayers and support!

Monday, June 13, 2005 6:13 AM CDT

Prayers to Gage's family as he received his wings at 4:44 yesterday afternoon. He passed with his family around him. Heather said she already felt better knowing he wasn't in pain anymore. Please pray for the strength they will need to move forward without their precious Gage.

We had a nice day yesterday, Spencer did eat lunch with his daddy yesterday... pork chops, corn, potato casserole, hot roll and cake... he didn't eat a whole bunch, but at least he ate and wanted to try different things. His constipation issue is improving greatly, although still requiring enemas in the evening to make everything work. Hopefully as he regains some appetite, this will improve as well. He was moderatly alert yesterday... he answers questions when asked, but doesn't bring up conversation himself. He seems comfortable and doesn't seem to be having as many leg cramps as he was having... overall his pain seems much less than a week ago.

We did loose our border collie yesterday, after 14 years, she too gained her wings, another blessing as she had gone downhill very rapidly and appeared to be in a lot of discomfort yesterday morning.

As for this week, we hope to be able to get Spencer to daycare some so I can finish up at school. Hospice will come today and Thursday to check his blood rpessure, etc. We have had rain, so Rob is kind of on idle, however, he has to ship out some pigs this week. Crops are looking good and fortunately we've been able to avoid huge storms.
I'm hoping I'll be able to make it to a friend's house for a little "swimming pool" time this week, I did get in mine yesterday afternoon for a little while, until a big cloud came over and froze me out. Summer will move by so quickly, it is already mid-June and I go back to work the first part of August.

Thanks for checking on us, still hoping and praying for our miracle and comfort.

Sunday, June 12, 2005 7:22 AM CDT

Happy Birthday to Rob! We are having his sister and her family, his brother, and my mom & stepdad for lunch today to celebrate Rob's birthday.

Spencer is getting some relief each day from his constipation with the help of enemas and all the stool softners and laxatives, but at least things are working. He ate a little oatmeal yesterday, I'm hoping he'll want to eat a little more something today. He was much more alert yesterday for the time he was awake. By the time we were done with his bath, he was exhausted, but when he awoke again in the evening he was alert. He is still sleeping most of the time, but at least he is comfortable when he is sleeping. Hopice nurse will come on Monday's & Thursday's to check him, and any other time we need them.

A couple little notes of sadness, I haven't been outside yet this morning, but am expecting to find that our border collie, Sadie, that we have had for 14 years has passed on. She was having lots of trouble getting up last night and didn't want to even eat the table scraps that I took out for her, she has been failing for a while, but dang I wish it didn't have to be on Rob's birthday.

A bigger note of sadness, please keep Gage & his family in your constant prayers as hospice told them Thursday that he has days/hours remaining here on this earth. He has really failed quickly this week and his family can use all the prayers for strength we can send.

Thanks for checking in on us, I don't always update as often as I used to, but no update simply means Spencer is remaining the same... any changes I'll update quickly! Thanks for all the prayers that continue flooding our way!

Friday, June 10, 2005 6:53 AM CDT

HOORAY! Finally making some headway with this whole constipation thing... forgot how exciting such an accomplishment can be! Spencer is taking lots of meds for his constipation issue, but we are finally beginning to get some results, so I'm sure he'll be feeling much better soon. His stomach is still quite firm this morning, but we'll see how today goes. Overall, his pain seems much better than last week. I do believe the blood pressure meds have helped a lot. We had the hospice nurse out on Tuesday night because of stomach pain, vomiting, and then chest pain... all due to the constipation. Hopefully he'll be wanting to eat again soon. Thanks to family and friends who have stayed the past couple of evenings with SPencer and his dad so that I could go to my grad class and then to a "good-bye" supper for a couple of my fellow workers. Dad is doing real good taking care of him, but since evenings are usually his worst time, he likes to have someone else here with him... understand totally, sometimes Spencer is just a two (or more) person job! (dad doesn't do dirty pants either)... Sunday is Rob's birthday, so we'll be having family for lunch and hopefully Spencer will feel like having birthday lunch with his dad. I'll put in a few more hours at work next week and then be "officially done" for the summer. I am moving classrooms, so once we can begin moving our stuff, I'm sure I'll be back in there some, it is nice to live close to where I work. Spencer will hopefully return to daycare some next week. Thanks to all for checking in on us, the prayers, thoughts and gifts. Please keep Gage in your prayers as he is traveling this very tough journey as well and having a lot of pain issues.

Monday, June 6, 2005 2:36 PM CDT

It is official, Spencer is now under hospice care. The nurse and social worker came today, we did paperwork and they checked him out so now I know who to call for what we need. GOOD NEWS... blood pressure medicine is working, he was pretty close to normal today. He is eating and drinking much better, so we haven't needed fluids yesterday or today. He is sleeping a lot, but atleast that signals that he isn't in pain. He continues to have some panic attacks every now and then, but they seem much less since he went on the blood pressure meds. So, we keep praying for a miracle recovery while we keep him comfortable and content. Thanks for checking on us!

Friday, June 3, 2005 6:19 PM CDT

Went to clinic today, spent the better part of the day... Spencer didn't enjoy the car ride down to the city... so much for being safe in the carseat, his neck just can't handle it even with support, so he got to lay on his pillow to come home, much better. His counts were good, electrolytes were okay and kidney function were a shade high, but not near as bad as I expected. His blood pressure however, out of site (perhaps it is inherited from me)... even after sleeping for three hours... so, we are now on nifedipine for his blood pressure, changed his pain meds from codeine to oxycodone, changed zantac to prevacid, upped his Keppra for seizures slightly, went back on diflucan for thrush in his mouth and throat and will be on fluids at night for awhile once again. I talked with hospice/home health this afternoon and we will begin them coming early next week to help us with Spencer's port care and anything else we need. Hopefully getting the blood pressure down will make him feel better, it has been running borderline for several months now. I visited with several of his nurses today, Chris, Gina, Kelly, Betty, and all the rest of the crew, thanks for all your support, I know you all are there for us no matter what we need anytime of the day! At any rate, we are home for the weekend and we'll just see how he does with the new meds in place! Thanks for checking on us and keep the prayers coming, still praying for our miracle and doing our best to keep him comfortable and content!!!

Sunday, May 29, 2005 5:39 PM CDT

Spencer continues to be status quo... he doesn't really seem to change much these days, however, he is requiring less pain medication and is not as rigid as a week ago, so I guess that is progress. He sleeps quite a lot, but what other options does he have residing in the couch daily. He will get to go back to daycare a little this week while I tie up loose ends at school, so we'll see how he does when he is back with the kids. All in all, he is doing okay! He is still on codeine at night and usually a dose in the AM, but none throughout the day, just using tylenol if he needs some relief during the day allowing him to be a little more alert. As for Rob & I, we are doing okay too. Rob went to Heartland Park for the NHRA Finals today... he always enjoys going to that event. I sat up my pool in the backyard, so summer is officially here! We know we have rough days ahead of us, but are just taking it one day at a time, just as we have for the past 3 1/2 years. Thanks for checking on us!

Wednesday, May 25, 2005 7:23 PM CDT

Spencer has had a much improved day today... may be the calm before the storm, may be the increased steroids, may be just a time factor of being post treatment, but for what ever reason, we'll take it. He woke at 5 AM with a very strong voice and wanted oatmeal... oatmeal we had. He got up, we did our sponge bath, washed out his hair, trimmed up his hair... all sitting without any pain episodes. He spent today with my mom and did good there. He is talking more, more alert and even told me he was going to come home and play with his toys today... although he didn't atleast he talked about them. It has been a busy week... our babysitter is on a band trip so Spencer has been bounced here and there... he spent Monday with me at school, Tuesday with the Groebe's, today at my mom's, tomorrow he'll go to the Hahn's, then Friday back to my mom's so I can wind up the school year. Hopefully each day he gets stronger. He is eating much better and drinking okay, but at least the pain is lessening!!! He made it all day today on only Tylenol rather than a dose of codine. So all in all, things are looking better for now and now is all we can concern ourselves with!!! Thanks for checking on us and a special thanks to our friends and family for helping me out with childcare this week!

Friday, May 20, 2005 1:38 PM CDT

We've returned from clinic today. Spencer had a CT scan done at 8:00 this morning, it is stable... his ventricles are slightly larger, but nothing grossly changed. His tumors remain stable. We got fluids as he was dehydrated once again. We talked at length with Dr. Emami, he believes that the majority of issues that Spencer is experiencing at this time is related to radiation inflamation, however, we've also made the decision that there is not any other chemo treatments or treatments of any type that would be beneficial for Spencer. Our hope and goal at this point is to keep Spencer comfortable and give radiation a chance to work, the swelling should begin to decrease within the next week and hope that no new tumors appear. We are going to do IV fluids this weekend in order to allow his throat to heal easier. Dr. Emami has also suggested that we begin to meet with hospice as they can be very helpful with the comfort factors and that way we will have an open file if there services become more necessary in the future. He does not see Spencer as a critical, terminal patient at this moment, but given the decision of no more treatments, this is the next step, better to have them in place and not really need them, then need them and not have them. So we are home, we will make it to a couple of graduation gatherings this weekend providing Spencer continues to do okay and I'll wind up the school year next week. We have increased Spencer's steroids back to where they were, so he should actually start feeling a little better just from that! For statistics, it seems that CPC's are winning as this makes Gage and Spencer that have crossed this bridge this week to the "no more treatment" stage. Please send an extra prayer to Gage and his family as well... they were one of the first Choroid Plexus families we came in contact with after Spencer's diagnosis. As always, thank you for the continual support and prayers for Spencer, Rob and I!

Thursday, May 19, 2005 3:51 PM CDT

Well today has not been such a great day... got ready for work this morning, then Spencer decided he would start the whole vomiting thing again...I ran to school, took care of things there and then back home. We talked with our doctors, increased decadron back up to 4 mg per day and we are going to do a CT scan tomorrow to see about tumor sizes and more so, hydrocephales (sp?)... suspecting that the radiation inflamation in his neck area has made the pressure in his head worse, along with trying to taper decadron... not a good combination, but we'll see! Prayers please that this is just a hydrocephales issue and not a tumor progression issue....

Wednesday, May 18, 2005 11:25 PM CDT

Finished another grad class tonight, 4 down, still a years worth to go, but getting through them... Spencer went to Grandma & Grandpa's tonight and had a pretty good night. He is feeling better, has been back to daycare yesterday and today, not setting the world on fire, but at least eating and drinking a little better... his respriatory infection seems better, however, tonight once again, I think I pick him up too fast, he had another spell like he had Monday as we loaded him in the vehicle to go to the doctor... he complains of head pain and cries until he kind of has a slight seizure... late on giving meds tonight too, never a good thing! He seems to be doing fine now... hopefully since we've gone back up on the steroids this will improve once again. All in all, he is about the same as a week ago, so at least not worse... one day at a time!

Monday, May 16, 2005 5:26 PM CDT

Just returned from a clinic visit... Spencer's bouts of vomiting and pain landed us in clinic today. His counts were good, but he was a little dehydrated so we got fluids. We did a chest xray, it looked okay. Doctors decided that he has an upperrespritory infection - treat with yellow triaminic; pain and throat sluffing from radiation - treat with codine, will help the cough too... continue with benadryl for the nausia and increase the decadron back to 1 mg... so we'll see how he is... about half way through the fluids he finally asked for something to drink and drank pretty decent, so that is a start. He has managed to keep the vomiting under control all afternoon now, so that seems to be improving as well... providing Spencer is no worse, I'll go to work tomorrow and he'll return to daycare! Thanks for checking on us!

Sunday, May 15, 2005 1:20 PM CDT

The above picture is from FFA Awards nigh Thursday night... Cody, Megan & Jennifer, holding Spencer.

Spencer started in with croup last night... seems he has a respritory infection of some sort, his croup is better this morning, but he can't keep anything down... he starts coughing then up it comes. He still has visable sores in the back of his mouth, so I'm sure his throat looks even worse. He wanted to eat lunch, but needless to say, that just didn't work. I've given him some more cough medicine, I think if we can get the cough calmed down he will be able to keep something down. I suppose if he isn't better in the morning, I'll call down and check with the doctor's, but really thinking it is a combination of the throat inflamation, sinuses and allergies... I kind of feel just like Spencer, without the cough.

I'm scheduled to return to work tomorrow and finish out the two weeks, hopefully Spencer will let me do that as some normalcy would be a nice thing! We'll just have to see how he does, don't want to repeat that nasty flu he had about a month ago. Thanks for checking on us and thanks for the prayers!

Thursday, May 12, 2005 10:12 PM CDT

Tonight was a night of memories... three of our best friends children are seniors this year and tonight was FFA Awards Night. Spencer and I attended and Spencer was very good. The FFA has been so helpful in doing a benefit bar-b-que for Spencer a couple of years ago and then this year the "Love for Spencer" campain... they have always kept him in their thoughts and plans... we were glad we could share this night with this special group of kids who we have known since they were born... the dad's all graduated together and continue to farm close to each other, most of us were FFA members ourselves, the kids have grown up together... Cody, Megan & Jennifer, holding Spencer... congrats to each of them on the accomplishements!!!

Radiation is over, now we remain in a waiting pattern for a couple of weeks to let his counts recover and then we'll begin chemo once again. He has been very tired this week, but at least the daily trips are done. I will return to work on Monday to finish out the school year and resume a little normalcy to our lives!

Say an extra prayer for Jason Hill, his wife, Gina, taught school with me my first two years at Cameron. The are the parents of two small children, a toddler and a new baby. Jason was recently diagnosed with a brain tumor and was only able to have about 1/2 of it removed. They are in the process of getting opinions as to what to do next! They live in Wisconsin now! Their webpage is caringbridge.org/wi/jasonhill! Prayers work miracles and this dad needs to see his beautiful children grow up!

Monday, May 9, 2005 2:37 PM CDT

Thanks to all for the mother's day thoughts! We had a good weekend... Spencer went to Grandma Robin's for a while Saturday night while Rob & I went out for supper then on Sunday we just kind of hung out at home... Spencer seemed to be having more neck pain on Sunday, however, Dr. Massey seems to think that is more throat pain, he has a bad case of thrush so we are beginning treatments for that. He also complained of ear pain, but they looked fine today. We will finish radiation this week and are waiting to hear for follow-up appointments at Mercy and what our chemo regime will be now. Spencer did fantastic on the treatment table once again today... now that we are almost finished he's got it figured out! Oh well, we'll take all the good days we can get!!!

Friday, May 6, 2005 7:59 PM CDT

Spencer did a fantastic job at treatment today, perhaps he knew it was Friday, perhaps he was just too tired to fight, but he didn't even cry when they put the mask on today!!! He has been very tired today, a long week of treatments! This evening, Spencer was the honorary chairman of the local Relay for Life. We went for the introductions and Spencer rode in his stroller for the survivor lap, pushed by a friend of ours who is also battling cancer. Although he is quite tired, he did a nice job waving to the crowd... the weather is to be nice this weekend, so hopefully we'll get outside a little while and enjoy some fresh air! Happy Mother's Day to every mother... especially to those with cancer kids!!

Thursday, May 5, 2005 7:07 PM CDT

Only one more treatment to go this week... thank goodness for weekends! Spencer has made it through the last two, but hasn't been easy... he has a hard time keeping his arms to his side and is fighting the mask a lot... however, we got them done. We had labs today, counts are dropping as we suspected. Only 8 more treatments!

Wednesday, May 4, 2005 7:23 AM CDT

Wednesday... hump day! Monday was a nightmare once again... Spencer freaked out when we got back to the room and we had to tie his arms down once again to keep them off of his head... bless the girls hearts that work there, they worked on his mask some more and are really trying everything to make it as easy as possible... Tuesday was much improved, he cried a little, but at least laid very still... I've tried to tell him it is okay to cry, he just has to keep those arms down...we'll see how today goes! Once again he is learning the days of week well... and knows we don't have to have treatment on Sat & Sun... He'll go to Sally's when we get home today as I have grad class tonight and need to get some things done at school this afternoon. The weather is getting nicer, finally, and he is talking about wanting to be outside riding his 4-wheeler, I think we'll have to stick with the gator as it has a better seat, but at least he is talking about wanting to be outside. Until later... let the treatments continue to be as quick as possible!

Saturday, April 30, 2005 10:51 PM CDT

Spencer had a good day today... he was able to sit up better and balance himself and his head better today than in several weeks. We went to my brother's today for Cousin Brett's 3rd birthday party... although Spencer couldn't get down and play with his cousins he seemed to enjoy seeing everyone. We'll just keep praying that each day is an improvement!! Miracles do happen!

Friday, April 29, 2005 5:42 PM CDT

Today was much better... Spencer cried for just a moment as they put the mask on and snapped it to the table, but then got himself calmed down and just kept telling us he didn't like his mask... treatment was also shorter today so that helped too... went to Olive Garden afterwards, had a nice lunch and then home... looking forward to two days off!

Thursday, April 28, 2005 6:21 PM CDT

Today went better, cutting out part of the mask seemed to help, he still cried, but not near as hard as yesterday! Time was a little shorter today too... tomorrow is another day, and thank god it is Friday... weekends haven't looked this good in a long time!!!!! Thanks for checking on us and say an extra prayer that this radiation is kicking butt!!!

Thursday, April 28, 2005 7:15 AM CDT

First day of radiation was a nightmare... Spencer had to be on the table for quite a while as they had to do xrays then the treatment... Spencer's puffy cheeks were either more puffy yesterday than Monday or the mask shrunk a lot... his skin was coming through the mesh and he was very uncomfortable... they are going to cut out some of that are of his mask in order to make it more comfortable for him today... we'll see how he does today, it should be much shorter today as well!!!

Monday, April 25, 2005 5:28 PM CDT

Spencer was such a trooper today... he did a fantastic job of getting his new mask made and his CT scan done... layed perfectly still... we will begin radiation on Wednesday, probably just 12 treatments this time to his spine. Thanks for checking on us!

Sunday, April 24, 2005 6:32 AM CDT

Only in Missouri can we go from 80's one week to frost on the ground the next! Spencer had his average day yesterday of occupying the couch and being quite content there... we were not out of the house at all yesterday, very windy and pretty chilly out! Last night at about ten til seven he had a spell... not certain if it was a partial seizure or a panic/anxiety attack... Grandma & Grandpa were here for supper and Spencer had mentioned showing them how he can walk (or can't) so we tried... he took really only about one step with his left foot, his right one isn't working much at all now, and began getting very upset... I was enouraging him that he was doing good and to keep trying when he just kind of collapsed to the floor... as I was holding him telling him he was fine, he became more rigid and began kind of hyperventilating and his eyes were twitching... the whole thing was very short, he took a deep breath and could talk to me and could squeeze my hands, then he got sick and puked all over us, but then went on to the table, ate speghetti and garlic bread, carried on conversations and other than having muscle tremors was just as normal as can be... he didn't go to bed until about 9:00 and slept quite comfortably all night... probably one of those things we'll never see again! However, it seems he always likes to do odd things just prior to getting a new treatment started! I guess it makes us appreciate getting treatment going even more! We'll see how today goes then we're off to begin the radiation process tomorrow. Never dull around here!

Friday, April 22, 2005 2:41 PM CDT

Update from clinic... counts continue to drop, but still not neutropenic... we meet with the radiologist on Monday to do the fitting & planning stages, possibly even a treatment on the spine, just depending how cooperative Spencer is, but at least we will get things moving forward on Monday. Dr. Emami is still checking into doing some low dose chemo while we are doing radiation and then planning on chemo following radiation... at least we still have options!!! Thanks for checking on us!

Friday, April 22, 2005 7:12 AM CDT

We are headed to clinic today to check his labs and then meet with the doctor to discuss what comes next with treatment, radiation, chemo, shunt surgery, any, all, or none of the above... hopefully we will have a plan in place to continue treating these tumors. Spencer has had a good couple of days at Sally's, he has been more himself, bossing other kids around when they aren't following the rules, so atleast he is quite aware of what is going on around him and cares enough to be bossy!! (We think this is a good thing at this point!) His appetitie continues to be huge, good old decadron! He can still take a few steps when we force him to, I would certainly say he has not gone down hill in the past two weeks, perhaps maybe even a little stronger now than a week ago! One day at a time... thanks for the thoughts, prayers and concerns!

Tuesday, April 19, 2005 1:56 PM CDT

Went to clinic today to have counts checked... all is okay, lower, but okay... saw Jill for a moment, she thought Spencer looked good... brain tumor board meets tomorrow and will discuss his case and begin developing his treatment plan... whatever that may be... we'll go to clinic again on Friday. Thanks for checking on us!

Sunday, April 17, 2005 3:19 PM CDT

Spencer's condition remains stable, his weekend has consisted of sitting on the couch, first in one position, then in another, eating and drinking chocolate milk. He is not complaining of any pain, just complains when I make him walk. He went outside a little with me today and sat in his lawn chair. He is just pretty much a couch potato at this point. Hopefully we will have our treatment plan in place by the end of this week and move forward before pain moves in... looking at a shunt for the hydrocephelus, radiation for the new tumors in his spine and then a different chemo for after the radiation... prayers are appreciated!

Friday, April 15, 2005 4:35 PM CDT

Well so much for the no news is good news... Dr. Emami and Jill have just come to see us... new tumors in his spine, one low and one right at the shoulder blade level and a possible new spot in his head... that one remains questionable. Dr. Emami has brain tumor board on Wednesday and will present Spencer's case once again... we believe he will have some more radiation at least on his spine and he is checking other chemo alternatives. At least we know why he isn't walking well... hydrocephelus(sp?) is also more extreme, so he is recommending the shunt at this point... we will have clinic on Tuesday and will discuss things once again. We are just now getting ready to discharge and hopefully we'll get to spend the weekend at home enjoying the weather. Thanks for all the prayers!

Friday, April 15, 2005 3:06 PM CDT

No news is good news... we had the CT scan of his head and MRI of his spine at 10:30 this morning, just returned from ENT and saw our nurse in the hall, no results yet, we are saying that is good news at this point. We will be leaving within the next half hour for home, ahead of rush hour traffic... we will be back on Tuesday for clinic. Spencer has taken a few steps today and seems to be no worse for the wear. Thanks for the prayers, I'll update when I know more results, hopefully we'll get to enjoy some nice weather this weekend!!

Friday, April 15, 2005 8:43 AM CDT

Spencer seems to be tolerating chemo well, no nausia/vomiting at this point. We are going to have scans around 10:00 this morning, should have some preliminary results before we come home this afternoon. He stood on the scales to be weighed this morning then walked across the hospital room to my bed holding my hands, but he walked more steady than he has in a couple of days and didn't yell at me... big improvement! He also swallowed his first pill today... yeeeaaahhhh!!! He couldn't have pudding since we are waiting for scans, so he took his keppra in cherry syrup and his little decadron pill we just put on his tounge, gave him sprite with a straw and down it went, he was so excited to take medicine like Grandpa and Dad! So now we just wait for scans and results... all prayers greatly appreciated!

Thursday, April 14, 2005 4:50 PM CDT

Spencer is finally in room 15, his first chemo is finished and he is getting the irinotecan now, chemo will be all done about 6:00 tonight. We are on standby for a CT scan of his head and a MRI of his spine tomorrow as well as seeing the ear doctor... could be a busy, long day tomorrow and who knows when we'll get to go home, but we should be home by bedtime tomorrow night! Spencer has told everyone that has talked with him today that he is going home tomorrow... he became much more apprehensive about coming when I got the suitcase out last night... I think the long stay last week really bothered him and he wants to make sure he's only staying one night. Prayers appreciated as we move to tomorrow's scans checking for tumor progression or increased fluid pressures!

Monday, April 11, 2005 1:37 PM CDT

We have been to clinic today, Spencer's counts were good, his blood counts and his electrolytes were pretty much in balance. We saw Dr. Emami, of course there is concern of tumor progression in his spine with his inability to bear weight on his legs. We will have a scan done Thur/Fri while we are inpatient to see what is going on... could be recovery issues from his illness, but don't want to ignore the possibility of progression. Other than his legs, he seems to be doing pretty good, of course he wanted to eat at the Olive Garden and he had a good lunch. So, we'll admit on Thursday and complete our last round of chemo and get a scan done while we are there! Prayers appreciated!

Sunday, April 10, 2005 7:28 AM CDT

Updating for the weekend, Spencer remains at home. He is slowly recovering from his week of vomiting/diarrhea. His appetite is recovering nicely, yesterday it was more like the old decadron munchies again with him planning from one meal to the next, every hour... his attitude and spirits are good, he smiles, laughs and visits, however, he remains basically unable to be mobile. He has great difficulty bearing weight on his legs or even setting himself up from laying down on the couch. I've been doing exercises with his legs, his coordination seems okay and his strength in his legs is pretty equal, he just has an enormous amount of muscle weakness and is very afraid he is going to fall when we are assisting him in walking. He did walk from the living room to the bedroom again last night better than he had all day... baby steps. I'm sure that with all the dehydration, the potassium he is on and the messed up decadron doses from not being able to keep anything in his system, he feels very wrung-out. We just keep encouraging, excercising and trying... however, this means he has been inside the whole weekend, yesterday was just too windy to even take him out in his stroller... maybe today! We see the doctors in the morning, so I'll be anxious to see what they think when they see him... we didn't realize he was so immobile in the hospital as he was not out of his bed for the entire time we were there. However, considering we were real close to needing to be in ICU last Monday, I guess we can't expect him to just be up and running in a few days, it would take us several days to recover too!!!! Keep the prayers coming... we're supposed to do our last week of chemo this week then we'll scan and make decisions about what we do next.

Friday, April 8, 2005 4:04 PM CDT

Spencer has had an okay day... he is eating fair and has only had one dirty diaper so far today, much improved. He is still very stiff, can't stand up on his own from a sitting position, and seems very weak in his legs, but at least he is eating and drinking, one step at a time. I'm sure it is going to take a little time to regain the strength that he has lost this week. He is sitting in the kitchen chair in front of the windows watching everything outside... seems quite content there. Hoping the weakness improves soon and he can be up and outside in this wonderful weather we are having!

Thursday, April 7, 2005 2:04 PM CDT

Doctors have been in and told Spencer that if he will drink good this afternoon, we can maybe go home late this evening. He has had a full can of Mr. Pibb since noon! He is doing better today and his labs looked better at noon. We will either go home late this evening or sometime tomorrow. Either way, we are scheduled to come back on Monday for labs and a clinic visit and will then decide on doing the last chemo of this round, probably Thursday and Friday of next week. Thanks for checking on us. Spencer is looking forward to going home. When Dr. Woods made rounds today, he asked Spencer how he was doing and he said, "well, I think I can go home today". We'll see...

8:03 PM UPDATE
We are home! Spencer is very stiff when he walks and his legs are weak, but we are home, he is happy, that's all that matters! I feel like I've run the marithon this week, but oh well, that's life! I'll be staying home with Spencer tomorrow, weighing diapers and keeping track of what he eats & drinks! At leat we are home and he is with his daddy!

Wednesday, April 6, 2005 7:14 PM CDT

Well we're still in the hospital, as far as I know we are putting chemo on hold for tomorrow anyway. Spencer had a good time with Gwandma & Gwandpa today, they brought him a Happy Meal for lunch and I brough Olive Garden for supper so needless to say he has eaten a little better today. He seems to feeling better, more alert, talks more and in general seems to be feeling good. He really wants to go home, talked Gwandma into putting his shoes on him and he was sitting in his stroller when I got here this afternoon. I've tried to explain we'll be here a few more days, but he just says tomorrow he'll go home, so each day we'll just stick with "tomorrow" until we know different. I'll see the doctors tomorrow and know more what the plan is at that point. He is back on imodium for the diarrhea, getting potassium sprinkles on his pudding to help keep it stable, they'll draw labs again here in a couple of hours, so we'll see where we are at. We are trying our third flavor of gatorade, he just doesn't really care for it, but we're trying. I'll update when I know more, until then we'll just keep saying our prayers that this is all behind us soon and we can be back on our treatment schedule!

Tuesday, April 5, 2005 12:49 AM CDT

8:03 PM Update - plan is to remain inpatient for the remainder of the week... get more fluids tomorrow, catch up on getting the system back in order then do chemo as scheduled on Thrusday and Friday. Gwandma Robin is staying with Spencer tonight so I could come home and work tomorrow as we are giving the MAP tests at school. Gwandpa will be to see him tomorrow as well, so he is looking forward to that. Thanks for checking on us!

Well one step forward two backwards... Spencer overall is doing better, he finally has a normal body temperature and the diarrehea is slowing down, he is beginning to want to eat a little, very little, but at least he asks for food now. He is drinking pretty good. We are staying at least tonight... his labs a little while ago were pretty wiped out... all of the high levels of fluids have wiped out his potassium so we're getting some of that this afternoon. I've still not seen the doctors yet to discuss what all of this does to the chemo plan for later this week... I'll update when I know more.

Monday, April 4, 2005 3:35 PM CDT

TUESDAY AM UPDATE: Roto-virus still negative, waiting on c-diff test... Spencer finally feel warm to touch rather than ice cold, his blood pressure has finally dropped to a normal level, but he still has diarrhea. He is talking and smiling now. I'll update after the docs make rounds this morning, have no idea if we'll be headed for home today or not.

Back to the hospital... room 11. After our weekend of feeling like crap... we came to clinic and received fluids for dehydration, have had a roto-virus test, so far it is negative, but they are trying to get enough stool to complete another one... Dr. Emami believes Spencer has some sort of gastro virus, hopefully the worst is past us. We will be staying at least tonight to get fluids and hopefully get the dirrahea under control... no vomiting today though, hopefully a little appetite will come back too. Did talk with Dr. Emami, we will scan after this weeks chemo then make decisions from there regarding treatments! Thanks for checking on us!

Sunday, April 3, 2005 7:31 PM CDT

Well chemo continues to kick Spencer in the butt!! We have had an absolutely beautiful weekend... and Spencer has felt like crap all weekend... yesterday started with vomiting, added in the diarrhea with the vomiting... kept some oatmeal down last night... today just laid on the couch all day, had the runs big time, went outside for just a little while late this afternoon and sat in his lawnchair, seemed to be feeling better. He tried to eat some supper tonight as he was begging me to grill steaks, he sat at the table, took only a bite or two, drank his milk, started for bed, and it came back up too... now he is in bed... I'll have to give meds again in a while since I had just given them... hopefully tomorrow he wakes to an improved Spencer or dehydration will become an issue soon!

Saturday, April 2, 2005 4:19 PM CST

Chemo has caught up with Spencer. For the first time in I don't remember when, we were on our way to Savannah this morning to pick up tractor parts when Spencer got sick. We pulled over, luckily I had a change of clothes in the car, cleaned him up, changed his clothes, then took him back to my mom's to stay while we went on to get the parts. He has pretty much laid around all day today and has been very cold... too bad because it is an absolutly beautiful day outside. He has also had a bout or two of diarreah... the great effects of chemo... at any rate, I've just now got him off the couch and am trying to talk him into going out for a little fresh air. At least tomorrow is to be nice as well, and hopefully he'll feel a little more like getting out then! Thanks for checking in on us. The above picture was on Friday at the hospital... Baby Katie, Spencer & Luke, his cousins!

6:10 PM UPDATE
Got Spencer talked in to going for a stroller ride so I could get my walk in and enjoy a little outdoors... on our walk he said the sunshine did feel good... walked our mile, headed for home... you guessed it, Spencer got sick again... good old chemo... however, he still wants to eat steak for supper, but I'm putting it on hold until tomorrow when hopefully he can enjoy it a little more! I'm sure he is hungry since he hasn't really had anything other than some watermelon today and he is still on decadron, but perhaps we'll try something a little easier to digest! Until tomorrow...

Friday, April 1, 2005 6:08 PM CST

We just arrived home, no April fools joke... we were to have been discharged at 12:45 today, however, his 12:00 labs were not good... low potassium, so we had to order up some, takes a while, then takes an hour to get it, then it was time for zofran dose, and then of course, if was rush hour... but we made it! He tolerated chemo like a pro, loves his new stroller, would rather lay in it than in bed! We went to ENT this morning, they worked on his ears, ultimately didn't get all the wax out as it is attached to his ear drum, so they put wicks in his ears and we have drops to do for a week, we'll go back next Friday and remove the wicks and hopefully the wax... then we'll get fitted for the hearing aids! At any rate, another week down, one more to go in this cycle! Haven't seen our doctor much the past couple of weeks, so not certain what our plan will be next! Thanks for checking on us!

Thursday, March 31, 2005 8:04 PM CST

This is Spencer's "Gwandma", updating the Journal page for Spencer and Julie. I talked to Julie earlier this evening. She reported that the computers were "down" at the hospital so asked me to do the update for all of Spencer's loyal friends who check in on him so regularly.

They were late getting into their room today. However, they started chemo while Spencer and Julie were still in the clinic. She said he should be done with the actual chemo by about 8:00 tonight. He is tolerating it very well.

Spencer has regained most of his vision, thanks to a reduction in the swelling in the brain brought on by the return to steroids. He will visit ENT tomorrow to have the wax cleaned from his ears and get his new hearing aid. That should improve his hearing considerably. With his hearing aids and his new glasses he should be "better than new".

He and Julie stopped on their way into the hospital and bought a new stroller. Walking from the parking lot to the clinic has become too much for him and he is certainly too big to carry at this point. Julie says they found an "umbrella style" stroller suitable for kids up to 65 pounds. It even reclines! She said he sat in it or slept in it most of the day. A sure sign that the new stroller has his full approval! It will be a great help taking him anywhere--even the store.

They will be home tomorrow afternoon, if all goes as planned. We are saving a big bowl of watermelon for him to eat when he gets home. That always gets rave reviews.

Thanks to everyone for your ongoing prayers and notes. You will never know how much they mean to all of us, including Gwampa and Gwama!

Monday, March 28, 2005 7:28 PM CST

The decadron munchies have hit... back to being a short order cook! Spencer is feeling good though. He enjoyed being outside today in this beautiful weather. He is finally playing with his toys again and acting like our Spencer. He hunted Easter Eggs yesterday, found them by steping on them, but hey, he found some! He had a good day playing with Cousin Sara. We are scheduled to admit on Thursday for chemo.

Friday, March 25, 2005 10:23 AM CST

We have been for our hearing visit... well we will be getting fitted for hearing aids for both ears soon. His best hearing is at a "moderate hearing loss" and that is only at two different decible levels out of the 14 tested, from there we go to moderate-profound and even profound hearing loss at the high pitch levels. We are going to see ENT, possible today, if not then next week to get the wax removed from his ears then be fitted for his hearing aids... new glasses, new hearing aids, he'll be a whole new kid!!! He is very tired today, but had his days/nights mixed up and we were up reading books many times during the night. Otherwise, he is doing okay today and participated very well for the hearing exam. One step at a time... We'll be headed for home later today. Spencer is getting his pictures done with live easter bunnies tomorrow and then Sunday we will be at Aunt Margaret's for dinner (all providing he continues to feel okay). HAPPY EASTER TO ALL!!!

Thursday, March 24, 2005 12:28 AM CST

We admitted directly to the floor this morning at 9:00, room 5. Spencer's port wouldn't work this morning, so we had to do a TPA treatment to get it working, took a while, but we finally got labs and they looked great. We have just hung fluids, will begin chemo somewhere between 2 and 3:00 this afternoon. He is feeling good, laughing, playing, wanted toys from the playroom today. The easter bunny is coming to the floor this afternoon, so providing he isn't napping, he'll have a big day! All goes well we'll be home tomorrow afternoon, we are scheduled to have a hearing test done tomorrow before we go home. Thanks for checking on us!

UPDATE 7:00 PM
Spencer has had a great day, he has asked for toys from the playroom, rode the tractor up and down the halls chasing crazy ole Barb and has visited with everyone today. He has tolerated chemo greatly, is just getting fluids now. We'll have our hearing exam at 8:30 in the morning, finish our fluids, and then head for home. Spencer's plan is to stop at Olive Garden on our way home and get noodles to take home for daddy... we'll see what time we get out of here tomorrow. Thanks for checking on us and for all the continued prayers!

Tuesday, March 22, 2005 4:33 PM CST

Yesterday was a long day of doctor's visits, but some resolutions have been made. We have ordered Spencer new glasses, both eyes are significantly worse, however, they told me not to get rid of the ones we have because if the swelling diminished a great deal, his prescription could return. He had no damage showing on the back of his eye, which is great news. This means that the pressure is coming from somewhere other than the back of his eye. We then went to clinic, talked with our nurse and with Dr. Hornig. I came home to discuss the option of putting in a ventricle shunt with Rob. After long thought, we have decided not to do the shunt placement at this time. It is still quite debatable as to weather the fluid that is in the ventricles is there because of overproduction, or if it is there because of tumor pressure, so we are going to try to shrink the tumors more, leaving him on decadron for a while to help the swelling and see where we go. Bottomline, Rob doesn't want to put Spencer back on the operating table unless it is a "half too" situation... we take gut instincts very seriously at our house. Spencer continues to feel better and be more alert, so we'll continue with three more weeks of chemo and then see where we go. Thanks for all the endless prayers and support!!!

Friday, March 18, 2005 8:44 PM CST

MONDAY AM UPDATE: Spencer had an improved weekend. His vision is much better, he actually wanted to watch a movie on Sunday morning and got his tractors out to play with our friend Karen on Sunday afternoon. I believe it still comes and goes, but at least it is coming. His energy comes and goes as well, but everything considered, he went to bed last night much better than he got up on Thursday morning.

FRIDAY UPDATE:
We are home from the hospital and time for a recap of the past two days... what a ride! We went to clinic on Thursday morning, counts were good so we were cleared to admit. Doctors were concerned about his vision issues, one pupil was dialated more than the other, etc. We got chemo hung and our nurse came in to tell me that Spencer needed to be NPO as they were going to try to work him in for an MRI. I reminded her that other than a sip of sprite at 9:00 AM, he had not had anything to eat or drink so we could go at any time. I called Rob to get him headed to KC and got my coloring books out to pass my time without going crazy. Radiology called to say it should be about 3:00. The doctors decided to go ahead and start decadron, the wonderful steroid, to reduce swelling. Well, they called about 3:40 and wanted him to radiology, while we were waiting for his chemo flush to finish, they called back and bumped us off the list for Thursday... of course, Rob walked in the door about 4:00, right behind Mom & Kenny, so we had company for the evening. Rob spent the night so he was with us for the MRI this morning. Rob & I had just come back up from breakfast this morning when they came in and said they wanted him downstairs immediately for his MRI... away we went. About 1:30, our resident pediatrician came in and said that we were to go to opthomology for a consult, the MRI was stable, so off to opthomology. We got there, the eye doc looked at Spencer and decided he was too groggy and tired to get a good exam and scheduled us for Monday. We went back to the floor, waited for discharge papers, and came home. After we got home, I called my hem/onc nurse back to clarify his decadron orders and she further explained that the tumors are stable, one even smaller, but his ventricles are both much larger due to fluid buildup. Dr. Emami has asked Dr. Hornig, our surgeon, to look at the scans and I will meet with them on Monday after the eye appointment to discuss possible need of shunt placement. So for now, we are home, back on decadron, I'm sure I'll become a short order cook once again soon, but for now he is doing fine, no nausia/vomiting and even put his glasses on a little while ago, Rob asked him why he was putting them on, and he said, "so I can see better"... at least he is seeing something now!!! Thanks for all the prayers and thoughts that have been sent our way! Miracles do happen!

Friday, March 18, 2005 12:50 AM CST

PRELIMINARY RESULTS.....STABLE!!! PRAYERS ARE BEING ANSWERED! More swelling, so the decadron should take care of that but the tumor themselves appear stable, will be continuing the chemo regime we are on. We are on our way to meet with opthomology now and then will head for home. THANKS FOR THE PRAYERS!

Thursday, March 17, 2005 3:47 PM CST

KEEP THE PRAYERS COMING, WE HAVE ALL NIGHT TO WAIT NOW! Spencer was bumped just a little bit ago to having his scan in the morning. We have already started the decadron back into his schedule... life is just a waiting game!!!

Thursday, March 17, 2005 1:14 PM CST

PRAYERS PLEASE!!!! Chemo is started for today, but due to his vision issues, we are doing a MRI sometime this afternoon/evening... Spencer's good eye isn't working well which only leaves his weak eye for vision. Hopefully tumors will be stable and we will just need to go back on Decadron to help with swelling... worse case, tumors are growing and then I'm not certain what options we have! I'll update when I know more!!!

Tuesday, March 15, 2005 5:07 PM CST

We went back to clinic today to get Spencer's yeast infection checked out... changed medicine, but Dr. Emami thinks he will be okay to start chemo on Thursday!

Friday, March 11, 2005 4:55 PM CST

Spencer has had an okay day today. He has not had any fever today and is drinking better. We are to encourage as many liquids as we can get down him, which is difficult! His diaper rash is looking much better today so I think we are turning the corner on getting him healed up. Tomorrow we will have Katie's (my niece) 2nd birthday party. Her birthday is really today, but we'll celebrate tomorrow. Tomorrow is also our 17th anniversary, so depending on how Spencer is feeling, we will probably head off for a steak supper somewhere tomorrow evening. Thanks for checking on us.

Thursday, March 10, 2005 11:25 AM CST

Well we are back home from the hospital, at least for a little while, with the chemo plans pushed back one more week. Spencer has a bad yeast infection and diaper rash from being on the antibiotics last week for the sinus infection. Doc's believe we really need to wait, as the irinotecan chemo is very hard on the skin as well and this diaper rash could become an even bigger issue easily. It is getting better since we've stopped the amoxicillian, but still not good. Problem #2, he may have a urinary tract infection... he is not wanting to drink and therefore not going potty very often... we did finally get a urnine sample this morning and they are sending it down to culture, so here in lies the waiting game... if it is a normal urinary tract infection then they will just call up some meds, but if they find he is too dehydrated or one certain bacteria culture shows up than we may have to admit either later this evening or in the morning to treat it... so we're on standby with the suitcases packed. Hopefully they find nothing in the urine sample and we'll just keep treating his diaper rash and yeast infection and give him just a little more time to rebuild for chemo, probably not a bad deal anyway... so for now we are home and hopefully will remain at home from now through the weekend!

Saturday, March 5, 2005 8:12 AM CST

Spencer's counts continue to build as we prepare for chemo this next week. His sinus infection seems better and his cough is basically gone!!!! He went camping (in Grandma & Grandpa's backuyard) last night, but that is the first time in weeks that he wanted to stay anywhere except with us. His personality is certainly returing to a more normal "Spencer" with each day off the decadron. He had a blurred vision spell on Thursday night which concerned us as to if he might have to go back on decadron, but hopefully it was just one of those lovely side effects of the decadron and the fact that he was very tired. He enjoyed supper with some of our teacher friends on Thursday after school, laughing and playing, then had his loss of vision after we arrived home... last for just a little while, he awoke from a nap and was fine and has been fine since. He played hard at Sally's on Friday and has enjoyed being outside with the nicer weather. One day at a time in this journey, hoping and praying the chemo is working and with it come many more days ahead...in the mean time there are still bumps in the road and mountains to climb, but at least he is back to laughing and smiling... that helps us all get through those bumps and over those mountains. Thanks for checking on us and thanks for the prayers and a big thanks to my dear friends Janel, Jill & Marcy for inviting me to go to Kansas City and see George Strait last night... had a wonderful evening... a little touch of normal life once again... THANKS, I needed it!!!

Keep the prayers coming, Spencer is still fighting!!!

Tuesday, March 1, 2005 2:19 PM CST

WE have made it home from clinic... red count & platelets were higher so counts are rebounding... white count lower which makes his overall immune system lower, but it is not too bad... chest xray looked better today, but he has a sinus infection and an ear infection so we are starting another round of antibiotics in hopes to get it cleared up before we start chemo next week. Thanks for checking on us!

Sunday, February 27, 2005 5:20 PM CST

Spencer ended decadron on Friday and has up and down days since. His counts on Friday were stable to improved, so no transfusions were needed. His personality is a little better, he smiles more now, but still pretty content just to lay around... still not playing with toys. His appetite is dwindling. This evening, his gait is quite off, but it seems to kind of come and go as well... his hearing also seems worse this weekend, but I think we're going to get it checked this next week... just so many questions and no answers at this point... hard to say what is decadron side effects (muscle weakness, weight gain issues, etc) and not enough time for chemo to really have had a chance to make any big differences... just a waiting game on a roller coaster! Overall, he isn't worse than when we started chemo, so we must believe that it is working and in time he will improve more! We'll just keep saying our prayers and asking for our miracle... pray for Gage too as he is fighting a relapse with the same tumor as Spencer.

Friday, February 25, 2005 2:20 PM CST

Just returned from our trip to clinic... amazing enough, Spencer's red count & platelets were actually higher today, so no transfusions... physical signs certainly can be deceiving... his white count had dropped in half from Tuesday. We'll return next Tuesday for more counts. His lungs sounded okay, still got the cough, but didn't do an xray today, continuing the cough meds... went to Olive Garden again, good thing we only have two weeks between chemo treatments... my waistline would be in big trouble if we went to Olive Garden any more often... however, Spencer loves it, so so be it! Thanks for checking on us! Home for the weekend!

Tuesday, February 22, 2005 2:11 PM CST

We're home from clinic... Spencer's platelets & red count both have dropped, white count increased thanks to the GCSF shot we got on Friday before we came home. Nothing was low enough for transfusion today! We went downstairs for a chest xray... looked okay, although Dr. Emami thought looked like a little viral stuff in there, so we'll continue to watch that... thinks immune system is tough enough to fight it some. Spencer wanted to eat at Olive Garden, so we did, he ate a very good lunch. We will return to clinic on Friday to check counts again.

Friday, February 18, 2005 6:30 PM CST

We are home, Spencer has had his happy meal and is now asleep. He came home on antibiotics as they are concerned about pneumonia, we will go to clinic on Tuesday to have his counts checked, they are dropping rapidly, and have another chest xray if needed. We will do our final week of decadron taper this coming week, so then we'll just pray we can stay off of it and Spencer's personality can return to normal. The hospital is full of pneumonia, flu and rsv so it is kind of scarry when home is a healthier place... I think I've washed my hands more in the past 48 hours than I have in a week... at any rate, we are home, chemo went fine, his kidneys functioned fine this week and now he gets a two week break from chemo, although we will go to clinic twice each week checking on counts. Thanks for checking on us, thanks for the prayers, and say an extra one for Gage Edwards, a little boy from Nebraska whom we met shortly after Spencer was diagnosed who has relapsed with the same tumor as Spencer's and is receiving his treatment in Denver.

Thursday, February 17, 2005 5:30 PM CST

We are finally in our room... although chemo started in the infusion room much earlier today... the floor is full!! Spencer has done fine with the chemo, about 30 minutes more and he'll be done with this round. Spencer had a chest xray this morning when we arrived to check for pneumonia, but it was fine... just a cough... we should be going home tomorrow and have one more week of the decadron and then we'll be off of it... hopefully we'll be able to stay off of it. Thanks for checking on us! SAY AN EXTRA PRAYER FOR OUR FRIEND GAGE, HE ALSO HAS THE SAME TUMOR AS SPENCER AND RECENTLY RELAPSED, 3 1/2 YRS IN REMISSION...

Tuesday, February 15, 2005 9:47 PM CST

Spencer will admit once agin on Thursday to begin his fourth and final week of this round of chemo... providing his counts are high enough. He is fighting a horrible cough right now and is still staying away from school due to the chicken pox at his school. He has been a little more active the past few days, but still not setting the world on fire... we did see his old smile and hear his old laugh over the weekend, which I hadn't realized I hadn't heard in a while... welcome sounds that our Spencer is returning from the dreaded world of decadron. We are still tapering it down and should be off in another week or so. Once we complete this week of chemo, he will get a two week break to allow his counts to recover before we begin another four week cycle. A huge THANK YOU to the Cameron FFA Chapter for coming up with the "Love for Spencer" idea and to all of the students and faculty at my high school who were so giving to contribute to his fund and made this Valentine's Day so very special... all so he doesn't have to eat hospital food and can have all the Happy Meals and Olive Garden Trips he wants... you all are so amazing! THANK YOU!

Friday, February 11, 2005 5:46 PM CST

Spencer and I made it home a little while ago, and like always, he wanted a happy meal as we made it to 36 Hwy, so to McDonald's picked up the happy meal and came home for supper... he downed it and half of dads McNuggets... he seems to be feeling good this evening and has the most energy he has had in several days. He played with his playdough today and seems a little more with it... hopefully it will continue! Thanks for checking on us!

Friday, February 11, 2005 6:49 AM CST

What a day, what a night!! The memories of never making any plans, because they are probably going to change are coming back quickly... we did not get chemo started until almost 5:00 yesterday, after 4 1/2 hours of fluids, his urine spec count was still 15 (was 25 when we arrived, had to be to 10 to begin chemo)... last week it took 30 minutes of fluids to get it from 25 to 10. They made the decision to give a fluid bolus which was something like 400 mL of fluids over 1 hour... that worked, barely and we got chemo started. During chemo, his face continued to puff, and his cough became more raspy and fluids were going in but not coming out real good... the resident came to listen to his lungs last night, but they were okay, gave some meds in the night to help him pee better... good thing right... kind of... although then we were up about every 30 minutes all night... so for now, I'm headed to the coffee pot!!! His face looks much better, his cough is much better and as far as I know we will still be going home late today... depends on who is reading the discharge orders, could be anywhere between 1 and 5 this afternoon, I'm betting on the 5. We are scheduled to taper his decadron some more, from 2 mg to 1 mg, only cut 1/2 last week, so cutting a full mg might be interesting on the behavior issues, but I'm thinking he needs to come off of it! or I'm going to have to buy a new wardrobe of clothes. For the first time in three weeks, he didn't want to eat last night... hasn't eaten anything since about 2:30 yesterday afternoon, so the chemo has caught up with him! (at least we know it is doing something!) I'll update again later this evening, from home hopefully!!!
Thanks for checking in on us!

Thursday, February 10, 2005 12:16 AM CST

We are in a room, 8, and the mag is being hung right now which means chemo will start about 2:30... he is doing a little better today, neuro signs looked okay, some weakness, but docs think it is due to the decadron still... we will taper some more this weekend... so far today he has had peanut butter sandwich, oatmeal, peanut butter crackers, a bag of doritoes and chocolate milk, we just ordered noodles, breadsticks, cottage cheese, peaches and strawberry milk... still no dulling the appetite! Thanks for checking on us and thanks to all the students at Cameron High School for their hard efforts in their "Love for Spencer" campaign... was so amazed at the board last night when I left school!

Friday, February 4, 2005 6:24 PM CST

We've made it home... Spencer is feeling better since we got home. He is glad to see dad and is playing with his toys now. Hopefully the nausia will stay away! He rode his 4-wheeler for a while when we got home and enjoyed the outdoors for a little while.

Thursday, February 3, 2005 2:37 PM CST

We have finally made it to a room... room 22 which is back in the transplant area again. Spencer's urine levels were too high to receive mag. this morning so we had to get fluids for awhile first... all tests cleared about noon and we got mag. started about 1:30... this means chemo should start between 3:30 - 4:00... rush hour discharge tomorrow! just like the old days! His counts were good otherwise, this morning he seemed very very tired, but he has eaten good and seems to have more energy now. Thanks for checking on us! Spencer wants me to go out and get our suitcases and his toys!!

Thursday, February 3, 2005 6:19 AM CST

Well it is Thursday and that means we admit for chemo today. Spencer has had a pretty good week. He went to school for half day on Monday, full day on Tuesday & Wednesday, by Wednesday afternoon... completely exhausted!!! He is eating nonstop... anxious to see how much he has gained in a week. He tolerated his first round of chemo beautifully... no nausia/vomiting what so ever, we'll hope this round goes as smoothly. He stayed with Grandma & Grandpa last night since I had my grad class and his dad was shipping pigs, he ordered his supper, ate and went to bed... living with him is like being a short order cook at this moment... I think we're going to taper the decadron this week, so the eating should slow down a bit! Although have to admit, it is good to see him eating like he has been. Thanks for checking on us... chemo should be going by mid day today!

Sunday, January 30, 2005 8:26 AM CST

Spencer continues to feel well and actually have more energy and activity than we have seen in a couple of weeks. He played hard yesterday, ate lunch at McDonald's and spent the afternoon/evening at Grandma & Grandpa's, no nap until late in the afternoon. He hasn't had any problems with nausia, appetite is good (thanks to decadron), but overall seems to be feeling good. Back to school tomorrow for both of us as we establish our new routine... school Monday, Tuesday Wednesday, hospital Thursday & Friday, home on weekends!!! The plan is to do a four week cycle, take two weeks off, repeat a four week cycle then an MRI. Thanks for checking on us and remember, these are tough kids in a tough fight!

Friday, January 28, 2005 6:04 PM CST

We arrived home about 4:00 this afternoon... I brought Spencer on home to be with dad while I went back to the Drug Store to fill his scripts and to Walmart for groceries and diapers, although Spencer did well using the restroom today, with all of the fluids he has had and the side effects of chemo, we'll be back in diapers, atleast for nights. So far Spencer has not had any trouble with nausia/vomiting. We are staying on the decadron at least for a few more days before we begin the taper. We will be doing the irinotecan & cisplatin for three more weeks, then take two weeks off before beginning again... we won't repeat the scan until after the second round, providing no other neurological symptoms rear their ugly heads. I couldn't have asked for Spencer to have been any better through clinic and the stay... he just did great! First week down.... ??? many to go!!

Thanks for checking on us...
Julie

Friday, January 28, 2005 8:31 AM CST

Spencer had a good night, kidneys are working fine and he seems to be tolerating the chemo well... he hasn't wanted anything to eat yet this morning, but doesn't seem to feel bad either. Last night he had chicken nuggets, pineapple, cottage cheese, a dinner roll, two bowls of banana oatmeal, and a cup of fruit... perhaps he just isn't hungry yet this morning. Our 24 hour post chemo should be around 3:00 today, so discharge will probably be about rush hour... just like old times, sit on the Peseo bridge during rush hour... oh well, we'll be headed towards home and will be there by bed time!!! Spencer's attitude has been wonderful! Thanks for checking on us!

Thursday, January 27, 2005 11:42 AM CST

Spencer went through clinic like a trooper this morning... he is being such a big boy. We admitted to our room about 45 minutes ago... room 4425, back in the transplant area. Many of his nurses are here today and welcomed him when we arrived. He has had lunch and is playing with his toys... chemo will start in a little while... he is feeling good today.

Saturday, January 22, 2005 8:06 AM CST

What a week... only worked three days but considering that is more than I've worked since Dec. 17th it seemed like an eternity... adding in Spencer's concerns didn't make it seem any better. He went to school on Wed & Thur but had to have the busdriver carry him into daycare on Thur because his legs were hurting and not working well. He also was sleeping a huge amount on Thursday so I called the docs, we began decadron Thursday night. Friday morning, he arose much much much better... off to school he went walking fine and with a much stronger voice. We went to Cousin Sara's basketball game last night and he is much better. He woke this morning ready to play. Our schedule is to go to school/work Mon. Tues & Wed then admit for chemo on Thursday using Irinotecan and another drug yet to be determined... doc's still gathering protocol info. Spencer has had irinotecan before, some time ago and got good shrinkage on it previously, hopefully it will work as good or better this time around. The decadron and decadron taper won't be fun, but at least it got him the relief that he was needing Thursday night... one day at a time in this old world!!! Thanks for all the prayers, each day is a day closer to treatment beginning which is hopefully a day closer to putting this beast to rest once again!

Tuesday, January 18, 2005 6:32 PM CST

We've met with the doctors and have some sort of a plan in place... life will continue as we know it until next Thursday. We will admit on Thursday to begin 24 hours of Irinotecan, a drug we have used before and have had shrinkage with. Our neurosurgeon says surgery is not out of question, but the concern of how much good it would do to remove one tumor when others are still growing, and not very operable. Dr. Emami is also searching out other chemo options... a couple of studies are currently going on using irinotecan with other combinations so we will likely be changing protocols, but rather than wait, we are beginning with it. Dr. Hornig is also making a phone call regarding brain barrier disruption chemo to see if it would be an option for us. Overall, an up and down day, would be nice if someone could just tell us something that would take care of it, but unfortuanetly this is a malignant brain tumor and we've already beaten a lot of odds in a game where no one has the magic bullet. So for now, we'll pray that Spencer continues to feel good and that we will get the chemo started before he becomes symptomatic! Thanks for all the prayers and support!

Wednesday, January 12, 2005 7:57 PM CST

It is with a very heavy heart that I post this evening... Barb, our neurosurgeon nurse just called... the scan did not look good... at least two of the tumors are much larger than two months ago... Dr. Hornig thinks surgery is our best option once again... Barb is going to schedule an appointment for us with Dr. Hornig to go over the scans in detail and discuss options. Dr. Emami, our oncologist, has been notified and I'm sure I'll be hearing from him tomorrow with his recommendations. Thank you all for you contiuous support and prayers, Spencer is a very strong little boy and together we will continue to battle this war!

Until I know more, keep the prayers coming to guide us in the best direction for treatment and that Spencer continues feeling good!

Julie

Wednesday, January 12, 2005 1:03 PM CST

We made it to Mercy and back just fine today. This morning, visability wasn't the greatest, but I've driven it in worse shape... I remember one Halloween night when Spencer shot a 102 fever and we had to go at about 11:30pm, couldn't see much beyond the hood of my vehicle, still made it in an hour... not a smart thing looking back! Not any trouble today... rained on us all the way home, temps were 41 when we left Mercy and 34 when we pulled into home so I think it is going to get worse before it gets better. We're glad to be home, my grad class is cancelled again tonight, so Spencer & I will just be hanging out at home... waiting on the phone call from Mercy. We did see Barb, the neurosurgeon nurse and she will call with results when she gets them, hopefully tonight or in the morning, I'll update as soon as I have them! Prayers, Prayers, Prayers...

Monday, January 10, 2005 6:20 AM CST

After being out from Tuesday afternoon on last week, Spencer quickly slipped back into the sleeping-in mode, so here shortly I will drag him out of bed and get him ready for school today... however, he did go to bed quite early last night so perhaps it won't be too bad today. He is scheduled for his MRI on Wednesday, January 12th... PRAYERS PLEASE!!! He continues to feel good, his behaviors have been good and his eating habits seem good, so we're hoping and praying for another stable report! We go to clinic on the 18th, but sure hope I get results prior to that visit! Thanks for checking in on us and thanks for the prayers, miracles do happen!

Wednesday, January 5, 2005 10:23 AM CST

Home on a snow day today and Spencer welcomed the break. Adjusting back to school, getting up at 6:30 rather than 8:00 hasn't been pleasent, so kind of nice to sleep in again today. Spencer continues to feel good. His next MRI is scheduled for January 12th with a clinic visit scheduled on the 18th, hopefully I'll get results prior to the clinic visit. At any rate, Spencer seems to be doing fine now! Winter certainly arrived in NW Missouri, amazing how we can go from 60-70 degree temps last week to an ice coating this morning... got to love Missouri weather.

Saturday, January 1, 2005 0:25 AM CST

HAPPY NEW YEAR!!! Spencer is finally feeling much much better... we had a wonderful evening at friends house and are now home and headed for bed... Spencer rang in the new year with the best of us!!! Thanks for all the prayers and support the whole year through. Best wishes for a happy and healthy new year for all!!

Wednesday, December 29, 2004 4:53 PM CST

Well on Monday Spencer got progressively worse, complaining greatly of his stomach... treated for constipation, called the pediatrician mid afternoon because he was doubled over, screaming in pain, did more treatment for constipation and got some relief of pain. By night, doubled over again, spiked a little fever, Rob got sick with a stomach bug, now thinking Spencer is dealing with both, called Children's Mercy to let them know we have a bug in the house, the suggested we ride out the night and continue treatment for constipation. Tuesday, Spencer was pretty good during the day, but was worse again by evening, gave more medicine for constipation. Today, he has finally decided to eat and is feeling much much better! Hopefully the effects of the chemo are starting to wear off, along with the stomach bug, and he is now on the mend!!! I've never seen him be in as much pain as he was in on Monday! Certainly glad we were at home and that he is now better! Weather is wonderful, so he went out to ride the four wheeler today. It is to be nice for a few more days... what a way to wind down christmas break... next Monday will be torture getting out of bed and back in the school routine!

HAVE A HAPPY HEALTHY NEW YEAR!

Sunday, December 26, 2004 10:35 AM CST

Hope all had a very merry christmas! Spencer certainly did! He was not feeling too great on Christmas Eve, liked spending time on daddy's lap, but once my dad's family arrived he decided he could open gifts. He felt better on Christmas morning and was excited with his Santa gifts. Later in the day, Rob's family and my mom's family joined us for lunch and more gifts on Christmas Day! Spencer is fighting a little cold and complained of his stomach on Christmas Eve. We finished the applesauce medicine last night. Christmas was good to us all! Best of all we were at home with Spencer and no plans for going to the hospital - the first time in four christmas' that I've not had a suitcase packed ready to head for treatments following christmas! I've updated the photo album with pictures from Christmas! Wishing each and everyone a HAPPY & HEALTHY 2005!

Thursday, December 23, 2004 9:25 PM CST

A moment to wish everyone a MERRY CHRISTMAS and a HAPPY, HEALTHY NEW YEAR! Spencer is doing his applesauce medicine this week and once again getting along fine. His last dose of this round will be Christmas night. He is looking forward to Christmas, but is a little confused about Santa coming again, "he's already been to our house," Spencer replies when anyone asks him if he's seen Santa. We'll celebrate Christmas with my dad's family tomorrow evening, with Spencer on Christmas morning, and then with Rob's family and my mom's family at noon on Christmas Day... all at our house, so I probably won't have time to update again until after Christmas! However, I can ask for nothing more for Christmas, I will be at home with my son and my husband enjoying family, friends, food and fun! Most of all, another Christmas with our Spencer! Thanks to all who have said prayers, sent cards, lent their ear and the many other ways that people have helped us travel this road! Miracles do happen!!!

Tuesday, December 21, 2004 6:35 PM CST

A big day today at our house. I completed my first of twelve grad classes with the final presentation being this afternoon, not the big deal, however, because my grad class was moved to Tuesday rather than Wednesday, dad had to take Spencer to clinic today... for the first time since diagnosis, dad went alone, well almost, a friend went as well, to take Spencer to get his labs checked and have his exam in order to start chemo tonight... they made it and were home in record time! Now he'll think I should always be able to make that trip in such short time... they got along fine, I told him all Spencer really needed was transportation, he could find his way to clinic and answer all the questions, however, with the upcoming new year he arrived at the clinic desk and was handed two pages of paperwork to complete... he filled out some and then just told them I could do it next month when I bring him back. At any rate, they made it, Spencer's counts are fine and we're beginning chemo at bedtime tonight... Merry Christmas... I think this makes 3 out of 4 christmas weeks that we have been on chemo since diagnosis... oh well, that's the way it works and fortuately this doesn't seem to really bother him so it shouldn't slow christmas down at all. Merry Christmas to all and to all a happy and healthy new year!

Sunday, December 12, 2004 2:49 PM CST

Check out the new pictures in the picture album... the tree lighting ceremony was wonderful... thanks to all who helped make the night happen!

Friday, December 10, 2004 6:38 AM CST

With the help of Santa Clause and about 75 family & friends, the tree magically lit once again. We had a wonderful evening! Spencer enjoyed Santa tremendously this year! I'll have more pictures on the over the weekend... love my new camera! Thanks to all who helped make our evening a memory!

Tuesday, December 7, 2004 1:28 PM CST

Santa Clause is coming to the Mattson's this Thursday evening. We are getting ready for fun, food & friends to join with us as we magically light Spencer's tree in the front yard. Spencer continues to feel good and is enjoying getting ready for Christmas! Hopefully I'll have the camera in working order and get pictures of the event on over the weekend!

Friday, November 26, 2004 6:25 PM CST

Thanksgiving has passed, although we still have a couple of more family dinners and the largest shopping day of the year arrived... I left Spencer in bed this morning and headed to Wal-mart for the digital camera special, so now, if I can figure out how to get the pictures from my camera to the computer, I can be more efficient at getting updated photo's on the webpage!!! To our Cameron Dragons, we're proud of you! They played in St. Louis today in the Show-Me Bowl and were beat by one point with 30 seconds to go in the game... a tough loss, but to an undefeated team and for the first time in Cameron history, we had a state finals team! Spencer is tolerating chemo again just fine, just seems really tired a lot, but he is growing like a bad weed! A little more christmas shopping to do and we'll be ready for Christmas! Thanks for checking on us and thanks for all the prayers all year through!

Sunday, November 21, 2004 1:02 PM CST

As Thanksgiving quickly approaches, we will pause for a moment to be thankful for many things. We are thankful for the bountiful harvest, our health, the support from our family and friends, and most of all for Spencer! It has been three years, two months and a few days since his diagnosis, WE ARE THANKFUL FOR EACH AND EVERY ONE OF THOSE DAYS! For the better and the worse, Spencer's determination continues to drive each day! We are thankful that he has enough strength to go to school, enough ambition to cause a little trouble and enough fight to keep fighting this battle! His MRI was stable, we will begin five days of applesauce chemo meds again Tuesday night and celebrate the holiday enjoying food, family & friends and most of all, Spencer!

God Bless and Happy Thanksgiving!
Rob, Julie & Spencer

Sunday, November 14, 2004 7:51 AM CST

Harvest is officially over at the Mattson farm!!! We moved everything home mid afternoon yesterday... of course it will take a day or two to get everything cleaned up, the sheds rearranged and everything put away for winter, but atleast all of the crops are in the bins! It was a good harvest this year! Spencer continues to do great! He has had two much improved weeks at school so we are also celebrating that! Our next clinic appointment is Nov. 23rd, then we'll begin the oral chemo again! I have taken the plunge and will begin a Master's program this coming week. It is being offered right here in my home town and will be a twenty month program in Administration. I'm looking forward to the challenges of that program, a different focus for a while, since I feel like I've already earned a master's in oncology and praying that Spencer's health continues well and allows us all to move forward with our lives! Chief Elf called one evening this week and we are working on scheduling the "Annual Tree Lighting" again this year to light up Spencer's tree. I'm sure he'll be asking to put his lights on soon! Thanks for checking in on us and keep the prayers coming! Miracles are happening everyday!

Wednesday, November 3, 2004 6:03 PM CST

Just heard from our Neurosurgeon nurse, the MRI is basically stable... nothing is showing that she is immediately worried about, however, she is recommending that we not wait three months before our next MRI as one of the ventricle's enhanced somewhat differently this time. There is also a possible new spot on his third lumbar in his spine, however, not measureable or confirmed, we will just need to watch it as well. I probably won't hear anything from the hem/onc doctors for a week or so, we are not scheduled to go back until the 23rd of November, we are guessing that his treatments will continue as they have been and we will probably repeat the MRI in 6-8 weeks!... For now, we're breathing a big sigh of relief, nothing grossly changed, two of the spots continue to shrink, other remain basically stable!!!! Thanks for the prayers!!! and a huge thanks to our nurse for getting the preliminary results to me tonight!!

Sunday, October 31, 2004 11:19 AM CST

Happy Halloween!! Spencer has a dog costume, but continues to say he isn't going trick or treating because he doesn't know what it is. We've tried to explain, but considering he really doesn't eat much candy, it isn't much of a big deal. Two of his cousins came trick or treating last night and they had a great time playing. We went to parent conferences on Friday morning, academically Spencer is doing okay, he is recognizing letters, numbers, counting, beginning to learn words, etc. BUT behaviorally a different story. He was sent to the office a couple of times this past week. He bit his teacher and threw scissors at another one, needless to say, he doesn't have scissors anymore, some real issues with impulsivity and anger management. His MRI is Wednesday, so we are all on pins and needles anyway, praying for a clean or atlest stable MRI then we can move on to dealing with this behavior thing... he certainly goes through a complete "melt down" as we call it at the high school with our behavior kids. Once he is over it, he is done and he is fine, but it is quite a trip. It seems he always does things the week prior to the MRI's to get my blood pressure boiling, perhaps he can just sense the tension of everyone around him as that time approaches... PMS (Pre MRI Syndrome) it's a killer for us all!!! At any rate, keep the prayers pouring our way, MRI November 3rd, they have warned me that it could be a week to ten days before we get results...

Extra prayers for Sam and her family as they have just lost their little guy, Marcel, to a choroid plexus carcinoma brain tumor, twelve days after finding out he relapsed! His webpage is caringbridge.org/ma/marcelhill! Things can change so fast in this world!

Monday, October 25, 2004 3:12 PM CDT

Another week, Spencer had a wonderful weekend. He traveled to Tulsa with his grandparents to see our Aunt & Uncle. He seems to continue to feel fine... he is still fighting a cold/allergies, whatever is making his nose run non-stop, but we are at least hoping that the ears are better. Tomorrow we go to hem/onc to get counts checked and clearance to start chemo again, Wednesday we go to the pediatrician to have his ears looked at again and Thursday is an early out day at school for parent teacher conferences... looking forward to that! Spencer has good days and not so good days at school, the third week post chemo seems to always be tough, he has very little patience for anything or anyone. I guess if it is only one week out of the month, we should be grateful, the remaining three, he is doing very well. He still struggles with handwriting tremendously, but he can spell his name outloud and writes "Sp" on his papers. He now will recite his entire name, Spencer Robert Mattson. Up until now, he would not say Robert in his name because, "that is his daddy's name". Oh, the fun of a five year old! MRI is November 3rd, keep the prayers coming! Our friend Emily, from Kansas City, (Spencer & Emily's dads were classmates) had her third good MRI, in remission! YYEEAAAHHHH!!! Congrats to her, may it continue!

Friday, October 15, 2004 7:47 PM CDT

Made it home from the pediatrician, not much progress on getting the ear wax removed. They used a water pik on him today as the wax was still very deep, however, he screamed so badly we had to quit. They did get enough wax removed to discover that he has ear infection in both ears, so home we came with antibiotic ear drops as well as oral antibiotics for his ears & sinus infections. We'll return on the 27th to work on the wax some more. He also got his flu shot, didn't think much of that! He was so exhausted by the end of our day that he slept all the way home and is still sleeping now. Good thing I fed him supper as soon as we got out of the doctor's office. I'll have to wake him soon to give him his evening meds, then hopefully he'll go right on to sleep again. He had a pretty good week at school this week, stayed all day on Wednesday & Friday... really seems tired by the end of the week! Hopefully the antibiotics will work this time around and we can get all of this gunk dried up before we go for the MRI on the 3rd! Rob is back in the combine and they are forcasting a week of good weather, so he'll make a big dent in the harvest process... always something exciting around here!!! Thanks for checking on us!

Tuesday, October 12, 2004 10:25 AM CDT

Went to clinic yesterday, counts are headed downward, but all was well. He was extremely tired yesterday, has a cough and runny nose that wears him out. We will travel to St. Joe this Friday to see the pediatrician again and get the wax removed from his ears as well as his flu shot. He seems to be enjoying school more and more and is proud to show us what he is doing. All in all, life is pretty normal for us!!! Raining, so Rob is out of the field for a few days.

Tuesday, October 5, 2004 10:13 AM CDT

Back to school today for Spencer and myself. We went to the doctor yesterday, got drops for his eyes, there were about 5 kids in the waiting room with obvious pinkeye. The doctor put him on an antibiotic as well since he was exposed to strep throat. This morning, his eyes looked much better, we put the drops in and off to school! He ate a good supper last night and seems to be feeling fine otherwise. Rob tried beans yesterday, but they are just a little green yet, switched to corn today... keep that combine rolling rain coming later this week. Thanks for checking on us.

Monday, October 4, 2004 11:40 AM CDT

Spencer and I are home today. Yesterday afternoon, in about an hours time, Spencer's eye began pouring water, then matted up and swelled up and turned very red, he also said his head hurt. I gave him benadryl and it helped somewhat, however, this morning, it was totally matted shut again and moving to the other eye... pinkeye we presume, but will visit the doctor this afternoon to confirm and get meds. He also woke with a croupy cough and a very think runny nose... sinus infection we presume. We see the doctor at 2:00 this afternoon in St. Joe and hopefully will get him some relief to his symptoms. This round of chemo went fine, no seizures, no nausia/vomiting, finished it on Saturday night, Sunday afternoon, began with the rest of this stuff... got to love this time of year!!!

Friday, October 1, 2004 5:11 PM CDT

Our friend Megan was crowned Homecoming Queen today, she looked absolutely stunning! Congrats to her!! It is going to be cold/rainy tonight so we won't be attending the football game, besides we have to unload pigs this evening, but I'm sure she'll look just as stunning tonight as her dad escourts her onto the field. Spencer's counts were okay on Tuesday, so we will do day 4 of "applesauce meds" tonight. He seems to be doing okay, although extrememly tired tonight... he went to school for a full day on Wednesday, half day on Thursday, but then went to our friend Kathy Hahn's house, who also had Jared Groebe for the day so Spencer and Jared had a wonderful afternoon together, except, no nap! Last night we moved Rob home from the bean field before the rain hit. Today Spencer had another full day of school complete with the homecoming parade so nap was a little short... don't think there will be much trouble getting him in bed tonight. All continues well!!!!

Sunday, September 26, 2004 10:13 AM CDT

The combine is rolling, getting the beans out why the sun shines. Spencer took off again this weekend with Grandma & Grandpa, they were headed back to Eldon again, this time to look at campers and he just thought he needed to go along... soooo off they went. They were staying in a motel last night so he could get some swimming time in. He just doesn't think they can take off without him! Rob got to the bean field on Friday afternoon. Beans are turning out well, what a welcome relief after the past three years, good crops, wonderful harvest weather and Spencer's improved health, what more can we ask for, other than an even more improved MRI on November 3rd! Spencer and I will travel to Kansas City on Tuesday for his doctor's visit and to make sure his counts are high enough to start chemo again on Tuesday night. Seems like this month has really gone by quickly! This week is homecoming week at our high school, so it will be a busy one indeed. Our friend, Megan Groebe, is a homecoming queen candidate so we are wishing her the best of luck! Spencer is hoping he gets to see Jerod Groebe this weekend at the homecoming events so hopefully we'll see them sometime. The weather is to hold good for the week, but then become much cooler Friday/Saturday, we'll take each good day we have. Thanks for checking in on us and I'll let you know how the doctor appointment goes and homecoming results!

Wednesday, September 22, 2004 5:04 PM CDT

Another busy weekend, Rob & I traveled to Sullivan Missouri to look at a pickup, no luck, and Spencer traveled to Eldon Missouri with Grandma and Grandpa to make molasses with Grandpa's family. He had a wonderful weekend, full of stories. We went by to visit on our way home, Spencer had a fit because he thought we had come to get him and he was not coming home with us! He has had some difficulties getting along at school this week, but overall, he is doing fine. He is liking school much better, wants to stay all day now, but I'm not convinced that physically he's up to it yet, perhaps well try next week a couple of full days. Rob is getting the combine just about ready for the field, they are calling for a chance of rain tonight and tomorrow, but I'm sure by the weekend, he'll be getting ancy to get in the field. School continues for me, quite busy, but wouldn't know what to do if it was any other way. I just keep wondering how I got everything done when I was spending two days a week at the hospital, at any rate, thankful we're not doing that anymore, this is a much better kind of busy!!! Thanks for checking on us...

Sunday, September 12, 2004 3:05 PM CDT

We have had a busy weekend, but Spencer continues to feel good. We left from school on Friday afternoon to travel to Iowa and Nebraska getting grain bin parts and combine parts. We first traveled to Atlantic IA, picked up the grain bin parts and on to Omaha where we spent the night. Spencer enjoyed the pool, even though it was cold. On Saturday morning, we traveled near Grand Island NE to get the combine parts and then home. No trip is ever complete without some trouble, we blew a tire on I-80 east of Grand Island, so that slowed our trip for a little while. Wish we could have spent more time in that area as we would have enjoyed meeting a couple of our "brain tumor" friends - Steven & his family and Nathan & his family both live in that vacinity, but we new Steven & his family were probably in Lincoln at the football game and when we get Nathan & Spencer together, it might take them all day to get their farming done...by the time we headed for home it was going to be a long day and Rob had hay to bale today (Sunday). Maybe next time, we can just go their direction just for a visit!! Spencer enjoyed seeing some combines in the field, the irrigation equipment and the cattle feedlots. He traveled well and took good naps both days. Now, to get the laundry caught up and be ready for another week of school. Spencer is enjoying school more each week... he talks about it a lot more now and is excited to show us what he has done at school. We go to clinic on Wednesday for regular lab work. Thanks for checking in!

Monday, September 6, 2004 8:03 AM CDT

Spencer completed his fourth round of Temodar on Saturday night and this round was also seizure free. His labs last Tuesday were good so we began the applesauce meds once again. We have enjoyed our extra long weekend, Spencer needed a chance to catch up on sleep... he is not a morning person. He just thinks we need to stay home for two more days. At least it will only be a four day week. I have several meetings scheduled this week, so it will be a busy one for both of us. Rob is getting the combine ready and will begin shelling corn soon. Spencer can't wait for dad to get the combine in the field. We watched neighbors cut silage on Saturday morning, the corn looks real good this year! Spencer had a good time watching the picker and watching them pack the silo, most of all he had a great time shelling off ears by hand into a bucket... doesn't take much to entertain him sometimes. Other than allergies, Spencer seems to be feeling very good, just gets tired. He is talking more about school all the time, so I think he is starting to enjoy that more. Thanks for checking in on us.

Tuesday, August 31, 2004 7:46 AM CDT

Talked with Spencer's teachers this morning and they both agreed that things are smoothing out for Spencer at school. He spelled his name for me last night, still struggling with writing it, but he is at least identifing the letters now. Small steps, but they are steps, the writing may always be an issue and doesn't help that he is a "lefty". All in all, he says school is "fine" instead of "not berry good" now, so things are looking up. Today, after he gets out of school at 11:00 we go to clinic for labs and then start applesauce medicine tonight. Thanks for checking in on us.

Friday, August 27, 2004 11:32 AM CDT

Another week of school is nearly complete and finally, last night when I picked Spencer up and asked how his day was he replied, "fine" YYYEEEAAAHHHH!!! Finally, normally his reply has been, "not berry good"... he is perhaps settling in to his new routine. We will go to clinic on Tuesday to check labs and begin chemo again on Tuesday night. We've had several inches of rain this week, the soybeans and alfalfa needed it though, harvest will be here before we know it.

Thanks for checking on us!

Wednesday, August 25, 2004 9:04 AM CDT

School continues, Spencer goes without too much of a fight each morning, but just doesn't like it too much. He said this morning, "Why can't I just go and do what I have to do and then go to Sally's, I don't like waiting." Can't argue too much with that. He is adjusting to getting up early each morning and is getting up in time for his oatmeal before we leave. I drop him off and then he rides the bus to Sally's after school. His teachers say he is doing okay, just lots of adjustments considering he is an only child and certainly has been the center of attention his whole life... day by day, he'll adjust!

We go to clinic next week and will begin chemo again on Tuesday.

Thanks for checking on us, I should have state fair pictures up by the weekend.

Thursday, August 19, 2004 6:01 AM CDT

Well we survived our first day back to school. I got home last night, asked Spencer how his day went and he said, "well, I got to see cousin Alex and Mr. Brown and Mr. Harrison wouldn't let me play with they toys. And I have to go 2 more days." The countdown kid... what can I say, everything in his life has been a countdown! As other people talked with him last night, he either repeated the above quote, consistency and memory is a good thing, or he just changed the subject. At any rate, he is fully aware that he has to go back and seems okay with that!

Our weekend was nice, he showed his pig at the State Fair on Saturday, pictures should be up soon. I believe it was the coolest state fair we had been at in many years, had to have long pants and coats... go figure, only in Missouri, but it made it nice for Spencer since he doesn't do real well in the heat. His counts on Tuesday were dropping. He started running a low grade fever on Sunday afternoon and that continued through Monday night, but everything checked out fine on Tuesday and no more fevers.

Chemo will begin again in a couple of weeks. Thanks for checking on us, I'll update pictures soon!

Tuesday, August 10, 2004 4:28 PM CDT

WE HAVE RESULTS....ALL OF SPENCER'S SPOTS ARE EITHER STABLE OR SMALLER!!!! yyyeeeaaahhhh!!!! This will certainly make the start of the school year better!!! Thanks for all the prayers!! I'm sure we'll be continuing with the Temodar and Dr. Hornig did mention the possibility of another gamma knife treatment on one of the spots that is remaining stable at this point... at any rate, three months since the last MRI and things are looking good!!!!

THANKS

Sunday, August 8, 2004 7:52 AM CDT

Spencer finished his applesauce medicine (Temodar, oral chemo) last night. He has had a good week, no nausia, no vomiting, a good appetite and NO SEIZURES! He spent a couple of days at daycare this week as I am beginning to return to work. This next week he'll go to daycare most of the week and we go on Tuesday for his MRI (Prayers Please!) He continues to feel good and be his normal, determined (my politically correct term for bull headed and stubborn) self. He will start school on Wed. Aug. 18th... what a day that will be (say a prayer for his teachers). He is getting a little more excited about going, atleast he talks about school a little bit now. We will travel to the State Fair for our annual outing to the fair and providing all goes well, Spencer will show a pig next Saturday during the Open Barrow Show. He seems excited about that, but we'll see when he gets down there! He did show one last year, well, he followed it around with a little help from our friends, Scott, Tonya, Cody & Troy.

I'll update again as soon as I have the MRI results, don't know what to expect on the time frame of getting those, but will have them before the end of the week!!! All prayers are greatly appreciated, the good news, I am still able to sleep through the night and my stomach isn't hurting... very good signs!!! Miracles do happen, and they have for Spencer and our family, but we can keep praying and asking for this whole cancer thing to remain stable!!! Thanks for checking on us!

Tuesday, August 3, 2004 5:52 PM CDT

Spencer returned to clinic today to have is labs checked before beginning chemo again tonight. All was well, his counts have recovered very nicely this round. We'll start the applesauce medicine (Temodar) tonight at bedtime, which will probably be pretty early considering no nap today. We arrived home from clinic about 4:00 and headed out to the pool for an hour and a half. We did find out today that our MRI is scheduled for next Tuesday, August 10th at 8:00 am, thank goodness for the early morning appointment so going without eating & drinking won't be a problem. Jill has told me they will call me with the results, instead of us going back down like in May, as soon as she gets them but I won't be surprised if it is late Wednesday or even Thursday before we get them. At any rate, we'll be saying extra prayers for the next week as we approach the next MRI praying for stable results from the Temodar. Thanks for checking on us.

Wednesday, July 21, 2004 12:41 AM CDT

Spencer went to clinic yesterday. He did a great job getting his port accessed and labs completed. His counts are starting to drop, but he is still doing well. We went to visit the nurses up on the floor and played at the playground before going to the Olive Garden for lunch. His appetite is great and other than getting tired, he seems to be feeling good. He hasn't had any more seizures since we increased the anti-seizure meds so that seems to have worked. We will go back to clinic on Aug 3rd to make sure all is well to start the next round of chemo, hopefully it will be seizure free. Thanks for checking in on us.

Monday, July 12, 2004 3:55 PM CDT

HAPPY BIRTHDAY SPENCER!!! WE LOVE YOU!!!!

Spencer has made it to 5, finally! We celebrated at his daycare on July 2nd and he asked, "how old will I be when we have my birthday at home?" It took a little convincing to get him to understand that all of the parties were just celebrating him turning 5. Yesterday we had all of his family here, except Cousin Brett who just had his tonisls/adnoids out, but is doing fine. Spencer had a wonderful day. We had lunch, opened gifts, had cake & ice cream and played in the pool. We finished his second round of chemo last night, this morning I said, "today is July 12th, do you know what that means?" With a huge smile he said, "my birthday, how old am I?" Still a little confusion I guess! Grandma stopped today, and he went running to her and said, "I'm done with my applesauce medicine so now I can stay at your house!" He attempted to stay on Saturday night, but had a couple of seizures, so we brought him home with us. After several phone calls to the hem/onc and the neurologist, they increased his seizure meds and we finished the last two doses of Temodar for this round without any more seizures, providing he makes it through tonight! He continues to feel good, look good and has enjoyed turning 5! Thanks for all the cards and notes that Spencer has received!

Saturday, July 10, 2004 10:05 AM CDT

Tuesday's clinic visit went fine, we started the second round of Temodar on Tuesday night, he tolerated it fine. On Thursday night about 8:30 he had a seizure, just like all of the others he's had. I called Mercy, they advised to hold the Temodar for Thursday night to see if the seizures were going to continue or not... they didn't, so last night we started the Temodar again. He is doing fine. He had a good day yesterday playing with his cousin. Today, Grandma and Grandpa are home and he is going to spend the day at their house so I can finish getting things ready for his birthday party tomorrow! My nephew, Brett had his tonsils and adnoids out yesterday at Mercy so we went to visit him last night... kind of different to go as a visitor. He is doing okay and should be home today. All of Spencer's cousins should be here tomorrow for his birthday... he will have a big day!!! Thanks for checking in on us!! A big thanks to all of the kids from Karen Kincaid's Youth Group at Harrisburg Mo. and from the Baptist Church at Gower Mo for all of the birthday cards and letters Spencer has received, he loves getting mail!

Summer is going toooooo fast....

Monday, July 5, 2004 8:50 PM CDT

Spencer is doing good. We go to clinic tomorrow to make sure his counts are high enough to begin his next round of Temodar. He continues to feel good. He didn't like the fireworks, but we did enjoy sitting outside and watching them from a distance... it's the noise he hates! Next weekend is his birthday, so we are getting ready for that! Amazing that he will be 5 on July 12!!! We're just hoping that he tolerates this next round as well as he did the first. Thanks for checking in on us.

Monday, June 28, 2004 9:24 AM CDT

Sorry it's been a little while since an update... the good news, no updates means nothing has really changed with Spencer. His counts were lower, but doing well when we were at clinic last Monday, we'll go again on July 6th to make sure he is high enough to start the next round of chemo. He had a great week last week at Sally's, going Tuesday, Wednesday and Friday. This week he'll be at home until Thursday when he gets to be with the kids and Friday we'll have his early birthday party at the daycare. No big plans for the 4th... if the weather allows, I'm sure Rob will be in either the wheat field or the hay field, which will suit Spencer fine. We'll make it to town on the 3rd for the parade. Spencer isn't found of fireworks, so it will be a pretty quiet 4th. Spencer is enjoying the cooler days, but thinks he needs a coat... seems to get cold easy. Likes being outside riding his gator and 4-wheeler as much as possible. I'm having some computer problems at home, which doesn't help getting updates in, but I'll update after our clinic visit as to the status of starting chemo next Tuesday night. Until then... praying this is our miracle!!!

Saturday, June 19, 2004 11:16 AM CDT

Spencer has enjoyed spending three days this week with the kids at daycare. He continues to feel good, although a little more irritable and dramatic than normal... however, this is his normal behaviors for crashing counts with chemo. We go Monday to check his counts at the clinic. He'll go to daycare some again next week providing his counts are high enough. We are spending this weekend at home, celebrating Father's Day with a cook out for Rob. Still raining almost every day, so not much farm work getting done, but the crops look good, just need some warm weather, sunshine and a few days without rain. However, after two drought years, we're trying not to complain much!

Sunday, June 13, 2004 8:14 PM CDT

Spencer completed his first round of Temodar last night and did just great. We had bad storms last night, lots of strong winds, lost electricity for about 12 hours, but all is fine today. Spencer has seemed more tired today, but after our long night of storm watching, I'm thinking he should be tired. He is going to get to go to Sally's some this week and play with the daycare kids and he is certainly looking forward to that. He helped his dad celebrate his 40th birthday yesterday and again today at Aunt Margaret's. So far so good!!! Now we just need some sunshine and dry weather so Rob can get the hay baled!!!

Thursday, June 10, 2004 8:28 AM CDT

We have completed two nights of Temodar and Spencer is doing fine. He is taking it in applesauce pretty good, although applesauce has never been a favorite of his. So far I have not seen any side effects, he has complained of his tummy hurting when he gets up each morning, but with the second Zofran he no longer complains. So far so good... now just the prayers that it works!

Monday, June 7, 2004 4:09 PM CDT

We've returned from our clinic visit... Dr. Emami thought everything looked good with Spencer. We have all of prescriptions to begin the Temador tomorrow night, the pharmacy had to order it in, but it will be here tomorrow. We will be able to give it with a spoon of applesauce, so I'm thinking it shouldn't be to much trouble to get down him. We'll do the chemo for 5 days, then take 23 days off. Planning on an MRI in about 6 weeks. Thanks for the prayers.

Tuesday, June 1, 2004 8:48 PM CDT

We have a plan... talked with Dr. Emami today, we are not doing tubes on June 11th... his hearing has improved, don't see an immediate need. We are going to clinic on Monday for labs and to get our instructions for Tremodar and will begin that routine taking 5 days on 23 days off.

Saturday, May 29, 2004 11:38 PM CDT

All is safe at the Mattson house!! Tornadoes swept the area tonight dumping several inches of rain and doing a lot of damage in the immediate area, but thank the lord, our house and farm appear fine. My dad's house looks a little rough, beat the paint off and took all of the tops of the trees around the house, but the house is in tact, my grandma lost a couple of old barns by her house and we have several neighbors with damage, I'm sure more will surface in the daylight of morning!

Spencer, Mom and I made a trip to Circleville KS this afternoon/evening to witness an absolutely beautiful outdoor wedding of one of our nurses from Mercy. Angie and Dan had an simply elegant wedding with beautiful flowers. The storm clouds were present, but stayed away during the ceremony. As we headed for home we began hearing of the tornadoes this way knowing we were driving right into them. We didn't even hit wet pavement until we were about 25 miles from home, yet at home the highways were shut down due to flooding and Rob was hanging out in a friends basement... thank goodness for cell phones so I at least knew he was okay and he knew we were okay.

Glad to be home and have a home in one piece!

Spencer continues to feel good, still waiting to hear from the docs, I'll call on Tuesday if I don't hear anything by then. Say an extra prayer for our friend Nathan... they are also looking at using Tremodar to treat his relapse.

Wednesday, May 26, 2004 8:55 PM CDT

Still waiting on doctor's recommendations... probably going to start Tremador very soon... also waiting to hear if we are going to proceed with the tubes in the ears... his hearing has improved and he doesn't complain of pain anymore. Overall he is feeling good. Today was Spencer's last day of school... he was excited!!!! Please say an extra prayer for our friend Nathan from Nebraska... we met Nathan last fall in Kansas City when he had his stem cell transplant... two little farm boys!!! He has relapsed this week... they are considering radiation at this time, but too are waiting doctor's recommendations... just don't understand why so many children are affected by this awful disease!

Friday, May 14, 2004 2:44 PM CDT

Sorry to report that I can not post the news that we had all so desperately prayed for... Spencer has two more new tumors... one in his brain and one in his spine. The tumors that existed in January are all stable or have shrunk, but the new ones present more challenges. At this point we are waiting for decisions from the neurosurgeon as to wether he can do gamma knife on the spots and from the radiologist as to if any more radiation can be done to his spine...Dr. Emmai is also looking into an oral chemo called Tremador... it is mostly used in adults, but there are some studies being done with children... Dr. Emami continues to give us hope that we are not yet at the end of this road, we still have some options and some possibilities for improvement, radiation can continue to work for a little while longer yet. He is exploring all options at this point. To all of those who continue to watch our webpage so closely and keep us in their prayers... THANK YOU!!! Spencer continues to fight this battle and we too will fight with him!
God Bless

MAY 23, 2004 UPDATE

Received an email from Dr. Emami, Dr. Hornig, our neurosurgeon, has made the determination that Spencer is not a candidate for gamma knife or any other radiation treatment at this time. This does not come as a surprise to us, as I didn't really think he could have any more radiation this close to completing his last. Dr. Emami is still looking into options involving Temodar, but it is looking like we will be starting that chemo regime soon. Spencer continues to feel well, spent Thursday night and last night at the local picnic enjoying the carnival rides and Friday night at a surprise 40th birthday for our neighbor... no naps Friday or Saturday, so he seems to be doing pretty good. He only has three more days of preschool and he is counting them down! I have four days left with the high school kids, and yes, I'm counting them down too!!!

I'll update when I know more!!
God Bless

Sunday, May 9, 2004 6:36 PM CDT

HAPPY MOTHER'S DAY TO ALL!!

Tomorrow is Spencer's MRI... the first one since radiation, the first one since January 13th... seems like forever ago! We are scheduled to meet with the doctors on Friday, so I don't know if I will get results before then or not... guarenteed... I'll post as soon as I get them! We're praying for positive results from the radiation treatments. He continues to feel good, just more tired lately, but we're 6 weeks post radiation now!

I'll update as soon as I have news... all prayers are greatly appreciated!!!!

Wednesday, April 28, 2004 4:47 PM CDT

Friends,

Just returned from the ENT... Spencer is scheduled for tubes on June 11th, repeat hearing test on June 23rd and most likely be fitted for hearing aides at that time. He was very cooperative today for the hearing test... moderate hearing loss in one ear, moderately-severe in the other ear. Dr. Weatherly believes that we have radiation damage that isn't going to improve with the removal of the fluid. I was hoping we could get tubes earlier, but for now those are the dates, we are on the list that if there should be cancellations, they will move us up. At any rate, if the hearing continues to decline like it has in the past 10 days, I'm to notify them immediately.

So for now, it's like living with an 80 year old man!!! (Oh, I forgot, any age of man... none of them can hear anyway!!!)

Thanks for the prayers... MRI MAY 10th

Sunday, April 25, 2004 7:51 AM CDT

Time to catch up a bit... last Friday night, April 16th, just about bedtime, Spencer experienced a seizure... a mild one, just like all the others before... we had been a little over one year with no seizures, just a little reminder that they can still happen. We waited our usual hour and a half, but he never had anymore and hasn't had... probably will never know why. Called Mercy, got instructions from them, but they were not surprised given where we are post radiation. If they become an issue again, we'll probably have to increase his medicine, but for now he remains on the same dosage he's been on for a year.

Spencer is finally liking preschool better, however, his hearing has become even worse within this past week. He pretty much lives in his own little world until you approach him to get his attention, so long as he is truly listening, he can still hear us talk to him, but otherwise, I believe all is just a blur of noise. After several calls to the doctor, we have an ENT appointment on Wednesday, probably looking at tubes soon to drain fluid. We've done Omnicef and Ammoxocillian, infection is gone, but fluid remains. He complains of ear pain several times a day, but Motrin seems to be keeping it under control. I'm sure he'll enjoy school more when he can really hear what is going on. The hearing test we did two weeks ago resulted in a mild hearing loss in one ear and a mild-moderate loss in the other ear... still to early post radiation to tell if this is permanent or not or if it is still going to get worse... at any rate, until the fluid is gone, he is pretty much "under water" all day. His moodiness has improved a lot, more back to normal kid behaviors, not such extreme aggression... he does seem to be more tired lately, but starting school, time change, being outside more and up later... makes me tired too!

I'll update again after our ENT appointment!

Thursday, April 15, 2004 8:12 PM CDT

Spencer has finished his first week of preschool... and had a much better day today... although he is pretty excited that he doesn't go tomorrow, not until Monday. A big thanks to Ms. Kera, Mr. Brown and the other staff at the early years building for trying so hard to make Spencer's first week a good one! He was atleast talking about it today and said he had fun today. Overall, he seems to be doing good... he still gets very tired by night time and his balance seems a little unsteady at times, but hey, for only four weeks post radiation, I think he's doing well! The weather is to be nice this weekend, so I'm sure he'll enjoy being outside playing and riding the gator! Thanks for all the prayers!

Tuesday, April 13, 2004 8:39 PM CDT

Spencer officially started preschool today. This morning, he was exicited about going, but got very nervous when we got to school and he saw all the kids... a bit overwhelming to him I do believe. His teacher says he had a good day, however, he doesn't want to talk to me about it. When I asked him what he did today, he just told me what he did at Sally's, the babysitter. I do believe he is overwhelmed and another transition period for him. Although, at least he hasn't told me he isn't going to go tomorrow. He has had a good evening tonight, however, we must get him to bed soon since it's a school night... the biggest problem, he doesn't go to bed unless we go to bed... oh well... I'll just have to adjust to going to bed at 9:00... the problem, I'm up in the wee hours of the morning and can't go back to bed... more transitions in store... got to love this roller coaster!

Saturday, April 10, 2004 10:11 AM CDT

HAPPY EASTER TO ALL...

You know it is Spring when your kid gets pinkeye... Spencer woke yesterday morning with a full blown case of it. We went ahead to our clinic visit, had to be in isolation of course, got some drops for it. Had labs done then went for a hearing test. Spencer has a mild hearing loss at this point, but has major fluid behind his right ear drum. We are going to see the pediatrician on Monday (I hope) about this. After we get rid of the fluid we'll repeat the hearing. We'll just be celebrating Easter at home since we have pinkeye, but that is okay, last year we were in the midst of transplant and living at the hospital... home is a better place! All though, I'm not sure I can do Easter quite as spectacular as the nurses did last year! Hopefully Spencer will still be able to start preschool on Tuesday!! I used to wish that this merry-go-round would slow down so that I could get off, but you know I'd probably just be board. Now I've just decided to accept that life is a lot more unpredictable and exciting on a roller coaster!

HAPPY EASTER!!!

Saturday, April 3, 2004 8:18 AM CST

Spencer (and mom) have had a much better week this week. Spencer has been taking naps at daycare which has really helped him in the evenings be less aggressive. The weather has been beautiful most of the week so he has also got to go outside and play both at daycare and at home in the evenings... he loves to be outside. One more week and then he'll start preschool in the mornings four days a week... another transition, but I think he'll really enjoy it once he gets there. Thanks for the continued support.

Friday, March 26, 2004 11:07 PM CST

One week post radiation, what a challenging week... although enduring treatment can be exhausting, sometimes it seems like ending treatment is more stressful than being on treatment. The waiting game begins again... waiting and wondering. Spencer has been more aggressive this week, a new routine... back to daycare full time and I'm back to work full time which means getting up earlier, to bed later, just seems like he had a tougher time adjusting this week... his energy level seems to be pretty good and he had a pretty good week while at daycare, evenings just more trying than usual,I think he is more tired than he wants us to know or wants to give in to at this point. Hopefully each week will improve as we move away from radiation. Mercy called this week and have scheduled his MRI for May 10th with us meeting with the doctor on May 14th and Spencer going for a physical. What a week that will be!!!! At any rate, all seems to be going okay... Spencer is staying at Grandma's tonight and I think he is going to go camping with her (in the back yard) tomorrow night if the weather allows... he thinks her camper is his playhouse! At any rate, a little break for both of us. Thanks for the continued prayers!

Friday, March 19, 2004 1:46 PM CST

RADIATION IS OVER! Spencer received his graduation certificate completing his 30 rounds of radiation. Rob went with us today. Spencer did very well today and we were out of there by 9:35 :) so off to Cabella's... we exchanged a pair of jeans for Rob, found a fishing pole for Spencer and then went to the Olive Garden, Spencer's favorite place he calls the noodle house, for lunch. Spencer ate a good lunch. Dr. Massey says she will let Dr. Emami know we are done and he will be scheduling a follow up MRI in 4-6 weeks. Spencer told everyone sitting near us at Olive Garden that he was done with treatments! I do believe he is excited and certainly understands that it is over with! No more trips to Overland Park, now just back to work full time... Spencer is tentively going to start preschool on April 5th... providing his health doesn't take any turns downward with the ending of radiation. Thanks for the prayers and support and to our family and friends that have made many of the trips with us!

Friday, March 12, 2004 5:16 PM CST

Another week down, only one more week to go. Spencer has had a pretty good week this week... for the most part has gone in the room on his own and participated willingly... a big help to us all. He continues to feel pretty good, the redness is getting worse all the time and some blistery spots behind his ears where is glasses rub, but overall, doesn't seem to be uncomfortable. 5 more treatments and then the real waiting game begins... the wait for the dreaded MRI which will be sometime in late April. Our plan now, is to start Spencer in pre-school as soon as his counts recover to a safe level to start preparing him for school and continue working with his behaviors. This evening he is going to Grandma Robin's so that Rob & I can go out for supper for our 16th Anniversary...a year ago, Spencer was going through transplant, my niece was born 7 weeks early and my sister was on a ventilator from congestive heart failure due to her pregnancy... tomorrow we will celebrate Katie's 1st birthday... all things in due time when we take things one day at a time.

Tuesday, March 9, 2004 3:10 PM CST

After a very long and grueling day on the table yesterday, about 45 minutes of taking xrays to ensure the machine was positioned correctly and then getting the treatments, today was much better. Spencer did absolutely wonderful today. He didn't want me to take him back today... off he went on his own!! He still wimpered during the treatment, but did great... these take a little longer than the original doses. He played very patiently in the waiting room today, kind of a whole new kid!!! We did a little shopping today and then went to the Olive Garden for lunch, Spencer's favorite place... he just did fantastic... on the way home, he asked if he could go to Sally's and play with the kids (yesterday he told her he was never coming back there)... so to Sally's he went... they will get to be outside after naptime so he'll enjoy that. Only 8 more to go, if they go like today it won't be a problem at all. The weather is looking good for the remainder of this week, the sunshine makes the trip much better! Thanks for all the prayers!

Thursday, March 4, 2004 12:09 AM CST

Thank the Lord we're not traveling for a treatment today... high water and wrecks everywhere in KC... the Cancer Center called and we will begin the boost doses on Monday morning. Dr. Massey thought a break might do Spencer some good. Daycare is full of the stomach flu, so he is staying far away from there this week. He seems very tired today, has already had one nap. He is still fighting his cold, his nose is running very thick junk today... all in all, he just looks like he doesn't feel very good, soooooo, we are just staying at home today and tomorrow, hopefully he'll be able to enjoy the nice weather they are predicting for the weekend and then be ready for treatment again on Monday. I don't think we'll have to take his shirt off anymore, so perhaps that will decrease the wrestling match!!! At any rate, only 10 more to go... we'll make it!!! Good weather is forcasted for next week, so shouldn't be any problems there!!! Thanks for all the prayers!

Tuesday, March 2, 2004 6:22 AM CST

Although each day moves us one day closer to the end of treatments, Spencer is letting us know that he thinks he sould be done now! Friday was a challenge... he threw himself on the floor of the treatment room and yelled, "I'm not getting a treatment today!", I picked him up, placed him on the table and assured him that after today he would get a break for the weekend... we got the treatment done. Well, here's to wishful thinking that a weekend would help... NOT! Yesterday, he wouldn't leave the little play table to even enter the treatment room... so, I picked him up, and carried him in kicking and screaming, grabing for my clothes and face, but once again, mom prevailed... Spencer got on the table and once the mask was on, although the crying continued, the fighting stopped, treatment was done, thank the lord! Grandpa is going today, we'll see what kind of day we have with someone new along. Wednesday is the last day for regular treatments, the boost doses will begin following, Dr. Massey will let me know today if those are going to start on Thursday, Friday or if we'll wait until Monday... sedation may be in order to get through those as it will be even more important that he lay very still. As a whole, he has done wonderfully and continues to do fine, once on the table and treatment over. I shaved his remaining hair last Wednesday night which is allowing for me to use lotion on his head and back which he seems to enjoy. He is more tired this week than last, but that is to be expected... 11 more to go after today!!!! Thanks for the prayers!

Thursday, February 26, 2004 5:44 PM CST

One more day and another week will be down... Spencer's counts seem to be holding pretty stable... thank goodness... we'll do another treatment in the morning. His temperment is becoming a little more challenging with the treatments, he is certainly letting us know he doesn't care for them, however, he goes in willingly every morning, just doesn't like the treatment itself. 16 down, 14 to go. We'll enjoy the nice weather in the next couple of days.

Friday, February 20, 2004 8:15 PM CST

Another week of treatments down... a total of 12 now, only 18 more to go. Spencer's counts held well this week so we were able to complete all five treatments. Wednesday & Thursday he got a little irritable on the table and didn't want to cooperate as much, but today he did just great, perhaps he really knew it was Friday!!! Now for a weekend off... these trips are taking their toll on mom anyway... between making the trip, Monday in the horrible fog, and trying to get into work a little, I'm glad to see the weekend come... as for Spencer, I think his body has adjusted to what it is going through, he isn't taking naps as much, perhaps, and hopefully, he's just feeling that much better and we are truly getting some tumor relief already!!! He's not holding his head to the side anymore and he's not complaining of his leg going to sleep anymore, not as many headaches either... all good signs at this point. Thanks for the prayers!!!

Monday, February 16, 2004 12:46 AM CST

We've made it over that bump in our road... Spencer's white count rebounded from 1.6 to 4.6 which put his ANC at 3500, we're set on go for this week. His treatment today went fine. They'll check his labs again mid week to see how he is holding up, but for now, all looks good!! Thank the lord! We have 8 treatments done and 22 to go... at least the weather is looking good this week for all our trips! And his counts are back high enough to go to daycare so hopefully I'll get into work a little more this week!
Thanks for all the prayers!

Thursday, February 12, 2004 8:19 PM CST

We have hit a bump in the radiation road, hopefully it is only a bump and not a road block! Spencer has done absoltuely wonderful the last two days... no tears even! However, today they have called to cancel tomorrow's treatment because his white count has dropped significantly dropping his ANC to 600. We are to try on Monday to see if his counts have recovered at all and go from there. Tomorrow we are going to Mercy to attempt the Psych Eval again, Spence wasn't too cooperative on Wednesday (imagine that). I'm planning on seeing Dr. Emami tomorrow as well. Spencer has been eating better each day this week and his energy has also improved each day... no nap at all today! Hopefully this count crash thing is very temporary and we can be back on our road map very very soon!!!

Monday, February 9, 2004 4:52 PM CST

Another treatment down and Spencer did fine. Talked with Dr. Massey and we are increasing the Zofran to fight the nausia in hopes that his appetite will improve a little. He played a little at Sally's this morning and ate a little lunch with the kids, so better than Sunday's eating! Tomorrow we go to morning treatments for the remaining 26. Thanks for the prayers.

Friday, February 6, 2004 12:48 AM CST

Three treatments down and we're glad to be home. We beat the storm to Kansas City on Wednesday, had Spencer's first treatment on Wednesday afternoon then checked into our motel before the snow hit. My sister and her kids came to visit for a while on Wednesday evening then left as the snow moved in. Spencer and I headed to the pool and he had a blast. Thursday morning we went swimming again as the snow continued to blanket KC... 10 inches in total. He is doing great with his treatments, no sedation, just in and out. Today they also drew labs, they got us in early so we are now home and don't go back until Monday for his next treatment. He is doing well, just leaving him very tired, sleeps for 2-3 hours after each treatment... thanks for all the prayers!

Wednesday, January 28, 2004 4:36 PM CST

Spencer did an amazing job today... we had our consultation with Dr. Massey, which went well, then proceeded to attempt all of the prep stages with Spencer. The girls were absolutely wonderful... they spent quite a bit of time making a mask for his teddy bear and letting him and the teddy bear ride the CT table in and out of the machine, then moved on to making his mask... we got it done, without any sedation... he did great, a few tears, but overall he did wonderful. We got the CT scans completed and the body tattoos done... all today!!! YYEEAAAHHHH! The girls are sure that since we were able to do all of this with no sedation that he will not need it for the radiation treatments either... we are scheduled to start next Wednesday afternoon, the first opening they have! At least we know have a plan.
Thanks for the prayers...
Julie

Monday, January 26, 2004 12:44 AM CST

We have our consultation visit with Dr. Massey on Wednesday morning. They are also going to try to do as much of the prep on Wednesday as possible. I'm still not certain to which day we will be starting the actual radiation, but we are getting closer. Spencer is doing pretty well, his leg is going numb a great deal in the night, hopefully that will subside once we get radiation going.

Thanks for the prayers.
Julie

Friday, January 23, 2004 8:53 PM CST

Well we have learned today that we will be traveling to Overland Park for the radiation, don't know exactly when we'll be starting yet... a little news each day, eventually we'll have a plan (I HOPE!!!!)

Thursday, January 22, 2004 9:33 PM CST

Dr. Hornig has called... Spencer has a tumor drop to his lower spine so radiation will be to his spine and head. We are still not certain as to where we will be receiving the radiation, North KC or Overland Park, but we will be beginning early next week. Spencer continues to feel well.
Thanks for the prayers.

Saturday, January 17, 2004 10:54 AM CST

We have an appointment on Tuesday for Spencer's MRI of his spine and his spinal tap. He is continuing to feel good. Hopefully we'll have some more plans in place by late next week... don't want to wait on this beast!!!! Thanks for the prayers and emails.

Tuesday, January 13, 2004 9:38 PM CST

We have returned home and are sorry to have to report not good news. We did not proceed with gamma knife today. Spencer's MRI resulted in 5 tumors. Four of them are very small, one is larger. We have opted to begin whole brain radiation very soon. I'll be contacting our oncologist tomorrow to schedule a spinal MRI and spinal LP and then contact the radiology center to begin treatments. The good news, Spencer remains non-symptomatic and hopefully that will continue. He handled the sedation very well today, just a very very long day. We have know since diagnosis that whole brain radiation would most likely be needed and we've managed to put it off for 2 1/2 years, so not too bad... now we'll just say our prayers that it is successful in putting this beast to rest.

Thanks for the continued support and prayers.

Julie

Sunday, January 11, 2004 6:07 PM CST

Spencer continues to feel good, we have gotten him over his cold, for the most part, and hopefully have him as healthy as we can to undergo the gamma knife radiation procedure on Tuesday. Tomorrow we meet with the gamma knife team and do the preliminary stuff, Tuesday is gamma knife day... extra prayers appreciated. I'll update when we return home.

Today, we spent the day at my mom's for her birthday, my brother's birthday and my nephew's birthday... January seems to be birthday month... the boys had a good time playing and fighting... seems they do equal amounts, especially at Grandma's where Spencer seems to have a need to guard his turf!!! At any rate, it was a nice day, except for the Cheif's loosing. So now... Go Packers!!!

Until I have more news, thanks for the continued support and prayers!

Saturday, December 27, 2003 2:40 PM CST

Christmas was wonderful! Spencer had a delightful time. On Tuesday night, we were host to 76 of our family and friends to welcome Santa and celebrate the lighting of the tree. (Hopefully I'll have pictures posted in the next few days). On Wednesday night, we had Christmas with my dad's family, 21 in all. Thursday morning, we had Christmas with just us, then Rob's family and my mom's family joined us for lunch/supper and more gifts. The highlight of the day was the very last gift, Spencer got his John Deere Gator, and rode and rode and rode. He got to ride again on the 26th. This morning he woke about 4:00 AM with croup and a fever, we went to the doctor to make sure it wasn't the flu, got some steroids for the croup and back hope. His fever broke about thirty minutes ago and he seems to be feeling much better already. Hopefully that will continue. As for Rob & I, we had a wonderful christmas as well, spending each moment of it at home WITH SPENCER! Gamma Knife is scheduled for January 13th... prayers are greatly appreciated.

HAPPY NEW YEAR!

Monday, December 22, 2003 8:01 PM CST

Went to clinic today, counts looked good, Dr. Emami and Dr. Gilman both thought he looked good. Got home, had a call from Research, Gamma Knife is scheduled for January 13th so we're hoping and praying that we don't become symptomatic before then. Tonight, we are preparing for the next three days of family and friends. Tuesday night Santa is coming to check on the tree we planted last year to help Spencer turn on the lights on his tree, Wednesday and Thursday we will be hosting our family christmas'. This gives me (mom) just what I want for Christmas, family, friends, food and best of all, being at home with SPENCER!!! We wish a very merry christmas to all!!! MERRY CHRISTMAS... THE MATTSON'S

Friday, December 19, 2003 9:17 AM CST

I've talked with Dr. Hornigs office and Research Hospital, we still don't have an exact date for the gamma knife, but we are proceeding with the gama knife. Spencer continues to feel pretty good.

Friday, December 5, 2003 1:36 PM CST

Friends, we've returned from our meeting with Dr. Hornig, it appears that Spencer has relapsed once again. Dr. Hornig is convinced that we have a very small spot that is new, the problem, it is very near the brainstem making surgery not possible. He is presenting Spencer's case to gamma knife team on Monday for their approval, but he doesn't think it should be a problem to treat it with gamma knife. The other alternative will be radiation of some degree. Not the information we wanted, but we have to be thankful for the past six months that we have had without treatments and be hopeful that this spot is very small and can be treated successfully. I'll update when I have more information from Dr. Hornig, it will probably be done the first week of January. As for us, we're certainly not giving up hope, until they tell us there is nothing more they can do, we have hope! This is just another bump in our road and another thorn on our rose! Spencer continues to feel good!

Monday, December 1, 2003 8:29 PM CST

Dr. Hornig has left us a message that we are to see him in clinic on Friday to discuss the MRI and what, if anything, we need to do. Not pushing the panic button yet, the good thing is the spot is small, very small, so if we need to do something we hopefully still have time and options. My gut feeling is that we will be scheduling Spencer for another gamma knife treatment within the next month. At any rate, Spencer continues to feel good and I have the upmost confidence in Dr. Hornig that he will direct us to the best decision we can make.

Monday, November 24, 2003 10:52 AM CST

MRI results are in... basically stable. The one spot that was treated is smaller.... that is the best news. The other spot has a possible new nodule... two doctors can't make the determination yet, Dr. Hornig will look at it next week to try to determine if this "possible new spot" is within the area that was gamma knifed or outside the area. Options could possibly be gamma knife again or surgery again followed by radiation if it is determined to be a new spot. Dr. Emami has assurred me that it is very small and may be truly nothing... we'll just keep saying our prayers. We'll probably repeat the MRI after Christmas. Overall, I'm taking a deep breath now and thinking that all is well... Spencer continues to feel good!!! That is the best part... we will celebrate Thanksgiving with much to be thankful for!!!!

Thanks for all the continued prayers and support.

Friday, November 21, 2003 6:12 PM CST

No news from the MRI yet... not overly surprised!!! It will probably be Monday, predicting good news since my nurse assurred me that someone would contact me today if it was bad news. Keep the prayers coming, give me the strength to keep myself together until Monday... we'll probably do a lot of christmas decorating since I'm sure I won't be sleeping much! Thanks for the continued support and prayers...

Thursday, November 20, 2003 9:10 PM CST

Tomorrow is MRI day... with some luck I may get results before we leave to come home, if not, it will be Monday. We have clinic after we are finished with the MRI. The good news is that so far my stomach isn't hurting... a signal I have had prior to each "not so good" MRI. Spencer is feeling wonderful, getting excited about Christmas and has a want list a mile long. I'll update as soon as I have results, but since Dr. Emami is not in the hospital tomorrow, it is questionable... remember... no news is usually good news! All prayers are greatly appreciated!

Tuesday, November 4, 2003 1:58 PM CST

Spencer continues to feel great. We went to clinic last week, all continues to seem fine. He went camping two weekends ago with Grandma and Grandpa. He got to go trout fishing, and as all fishing stories go, the big one got off the line. He had a great time. For Halloween, he dressed as a leopard and had a party at daycare. He wasn't too impressed with the thought of going out trick-or-treating so we went to Kansas City and had supper as a family. It was a nice night and much better than dragging him kicking and screaming out of everyone's houses because he couldn't stay and play. I'll have new pictures up soon!!! Our next MRI is November 21st... we're holding our breaths and saying prayers that at 6 months off chemo... all will remain stable!!!!!

Sunday, October 19, 2003 8:52 PM CDT

The funeral has passed, we're trying to return to normal, whatever that is... Rob is combining beans and I'm back to work. The picture of Spencer and his Papa E. was taken in the fall of 2000 prior to either of them becoming ill. Papa E will certainly be missed, but we have many many memories to fill our days. Spencer continues to feel well, we have clinic next week and still up in the air on when the next MRI is... sometime within the next month. Spencer is certainly enjoying his sandpile and riding in the combine with his daddy. Being back at daycare is a big plus too... he is growing up so fast!!! Thanks for the prayers!

Thursday, October 2, 2003 8:47 AM CDT

Today is a day for sadness and remembering, today we will bury Spencer's Papa E. Spencer with all the wisdom of a four year old, seems to be understanding so much at this time in our family. He asked how Papa is going to get to heaven with granny, and I replied, "on a rainbow", Spencer had just seen his first rainbow a couple of days before. In a few days I plan to take Spencer and a rainbow of balloons and release them from the cemetery. For now, we just pray that perhaps the Lord has taken Papa and placed him in heaven with Granny to allow us to be given Spencer and his good health. The Lord giveth and the Lord taketh. Rob's dad, Papa E, had fought a rare blood disorder for nearly two years. He passed peacefully at the age of 74 on September 30, 2003, the same day we buried Rob's mom just three short years ago. Once again, they are together! Thank you for the continued support and prayers.
Rob, Julie & Spencer

Thursday, September 25, 2003 7:51 PM CDT

We've returned from clinic today, everything is looking good. Spencer got labs done, his physical exam and received his pentam. Dr. Emami agreed that he is looking great! We visited a few of the nurses in the hem/onc unit today, Spencer always wants to go and see his nurses (really he just wants to play with the toys up there) he does miss the hospital I think. Amazing... we will return to clinic on Oct 24th and they are going to schedule his MRI for around then too... the Gamma Knife Clinic wanted one done three months post gamma knife so that is the end of October. If that one remains stable, the next one will be the end of January. Dr. Emami thought this would be fine, (having this one two months past the last one), he thought it would make me feel better! It seems really weird being back to work all of the time... someone recently said they thought they had already seen me more this year than all of last year... that is kind of how it feels too... perhaps I'm needing a vacation, anyway, I'm just greatful that I'm able to be at work every day and that Spencer is enjoying daycare and the return to a "normal" childhood! Sally has been teaching him soccer moves, he told Dr. Emami that today! Once again, thanks to all who continue to ride this roller coaster with us and thanks for the continued prayers... they are being answered everyday!

Saturday, August 30, 2003 8:03 AM CDT

Spencer is doing great. Our MRI last Monday looked really good... actually a little less enhancement than when he had the Gamma Knife a month ago. We have had all of our 100 day post transplant tests and everything is looking good. They'll let me know next week what his immunity levels are looking like, but overall his counts are recovering very well. No major deficits were detected anywhere!!! For now, our job is to return to a normal life, whatever that may be. My updates will probably be less frequent as we will not be traveling back to the hospital until Sept 26th for labs again and pentam. Our next MRI will be in three months, unless something changes physically to warrant one sooner... but that isn't going to happen!! Of course, we know this fall is going to be a challenge with Spencer returning to day care and going through the cold/flu season, but hey, after what he has been through, how bad can a cold/flu be!! We'll just take it one day at a time and deal with what we are dealt... it has gotten us this far! Again, thanks to all for the continued prayers and support and for riding this roller coaster with us. What a ride it is, but it is a much easier ride with friends and family right beside us.

Tuesday, August 26, 2003 1:29 PM CDT

MRI IS STABLE!!!!! YYYYEEEAAAHHH!!! THANKS FOR ALL THE PRAYERS... WE GO FRIDAY FOR THE 100 DAYS POST TRANSPLANT BLOOD WORK AND EXAMS.... WE'RE CELEBRATING NOW!!!!!

Saturday, August 23, 2003 9:10 AM CDT

Spencer has enjoyed his first week at daycare... without too many issues. He has made that transition much easier than I expected, after not being with the kids for nearly a year. I have survived my first week back at school, it was much nicer starting the year at school than being at the hospital on the first day. We have much to be thankful for... it was two years ago today that Spencer began his seige of vomiting that ultimately ended with the diagnosis of his brain tumor. Since that time, he has done so wonderful, despite three brain surgeries, 14 months of chemo, two mini stem cell transplants and a gamma knife treatment. We have celebrated turning three and turning four... Monday, we will have another MRI... the first since the gamma knife... we're praying that all remains stable and we'll be celebrating even more things to come. All prayers are greatly appreciated! When life gets so busy and we think we're going crazy, just remember ASAP... Always Say A Prayer!

Wednesday, August 6, 2003 10:29 PM CDT

Spencer continues to feel very good. We went to clinic on Monday to get his Pentam IV... all is well. We have a MRI on August 25th, providing it is stable we will move to MRI's every three months... I am still taking one day at a time, hoping and praying for the best, but still have to keep the worst in my plan... one year ago tomorrow is when we received the devastating news of the reoccurance... after being so sure we were on a healthy road...don't even want to go there again! He is feeling good, eating good and for the most part acting good... just normal little four year old fits... could care a less about potty training, but looking forward to returning to daycare soon. I will be returning to work on Monday and Spencer will be returning to daycare on the 20th... he is certainly excited about seeing the kids, however, I don't think he will like it near as much once he is there and has to do that dreaded thing called "share"! He has certainly become a very spoiled little boy over the past two years!!! Oh well, at least we have had the chance to spoil him!!!

Monday, July 28, 2003 9:58 PM CDT

We met with Dr. Emami today and unless something changes at the Brain Tumor Meeting this week, we are finished with treatments. We will have a MRI on August 25th... if it remains stable or improved then we'll proceed with MRI's every three months... if it is showing more tumor activity then we will begin more radiation, but Dr. Hornig thinks that gamma knife will do the trick. Only time will be the true answer, but we have already been blessed with nearly two years of "time" since Spencer was originally diagnosed. We'll just pray that we have many more years of time to come! We go back to clinic next Monday for pentam and I'll know then if anything changes from the meeting this week. Thanks for the prayers.

Friday, July 25, 2003 8:28 PM CDT

We're home from Spencer's Gamma Knife treatment... all went as planned. Dr. Hornig seemed pleased with the procedure. Spencer is home playing and eating... seems to being doing fine at this point. Only time will tell the true success of today, but it is over with and he seems perfectly fine. Thanks for the prayers.

Monday, July 21, 2003 3:07 PM CDT

Just returned from Research Hospital... very impressed with the way we were treated there today... they went out of their way to make Spencer comfortable... made me feel real good considering it isn't a kids hospital. Spencer's MRI results are "no measurable change" YYYEEEAAAHHHH!!! Two months off chemo and no growth!!!! We have rescheduled the gamma knife from tomorrow to Friday of this week.

Thanks for the prayers.
Julie

Tuesday, July 15, 2003 6:53 AM CDT

Spencer had a very good birthday... he certainly seemed to enjoy having his cousins all here and playing his heart out. It was a nice day, but thank goodness that I got the playroom done in the basement... it was so nice to send the kids to the basement and they could do anything they wanted... no adult rules down there!!! (atleast not too many). It is very hot this week so Spencer won't be outside much. It is looking like we're headed down the same weather road as last year... we missed rain last night, the next chance is Sat-Sun, but it is to be 100 degrees on Saturday, our corn is trying to pollinate, certainly looking like another drought year on the farm front. Friday, we head to Mercy for Spencer's MRI... transplant day +49 today and he is doing great. We are scheduled to meet with the team at Research Hospital on Monday which is where he will have his gamma knife done on Tuesday... unless perhaps a miracle does happen and the MRI on Friday comes back clean! We're still praying! Our MRI on Friday isn't until 4:00, so I'm sure it will be Monday before I get any results. Anyway, I'll update when I have more information. Thanks to all who sent birthday greetings and cards... and thanks for all the prayers of support.

Wednesday, July 9, 2003 4:29 PM CDT

Children's Mercy has called and we have dates... we are going this Friday to get his Pentame IV (pneumonia prevention). We are going to have a repeat MRI done on Friday, July 18th to see if there are any changes and then have the gamma knife treatment done on July 22nd. Spencer continues to feel real good, not taking naps on a daily basis and eating like a four year old. His birthday is this Saturday and we'll be celebrating with family on Sunday. Quite an accomplishment to celebrate four considering his original diagnosis came shortly after turning two. Not certain if/when the IMRT/conformal radiation will begin yet, probably about the time school starts since that is when Spencer likes to make my life interesting. Oh well, like the last two years, we'll find a way to make it work if that is what is needed. Thanks for the prayers and continued support and following of our roller coaster life.

Monday, July 7, 2003 10:11 PM CDT

We'll we had a good 4th... Spencer didn't care much for the fireworks, but played inside quite nicely while the rest of us watched the display. He seems to be feeling pretty good, haven't had any bloodwork done in a couple of weeks now... we're still waiting to hear from the hospital on when we are doing the gamma knife and starting radiation. I'll call tomorrow to remind them we haven't got a date yet. I'm certain with the holidays that our neurosurgeon was swamped with emergencies. Today, I put 12 gallons of cucumbers in brine for sweet pickles, tomorrow, I'll pick green beans from my mom's garden... summer is great and passing much too quickly. Until I hear from the hospital for our next procedure, we're just living each day the best we can and having fun!

Wednesday, July 2, 2003 7:57 AM CDT

Spencer got his port put in yesterday... no problems at all. We were bumped from the surgery schedule early Monday morning, but made it in yesterday about 1:00. He came home and played all evening, finally getting to bed about 10:30 last night... doesn't seem to be having any pain or discomfort. I think the port will be much better for us now. A few more days and he'll be able to play in his little wading pool! We are still waiting to hear from Dr. Hornig as to when we are doing gamma knife, Dr. Gilman wanted it done this week, but with the holiday, I don't see it happening, I'm guessing Monday or Tuesday of next week, we'll see... I may get a phone call today saying "be here in the morning". At any rate... Spencer is feeling good.

Friday, June 27, 2003 5:39 PM CDT

PRAYERS HAVE BEEN ANSWERED.... HIS SPINAL TAP SHOWS NO MALIGNANT CELLS....we are currently scheduled to have a port put in on Monday, (his hickman came out yesterday) and then I am waiting to hear from Dr. Hornig and his team in regards to when gamma knife is scheduled for. At any rate... we are celebrating a clean spine!!!! Thanks for the prayers...

Saturday, June 21, 2003 9:41 PM CDT

The latest update is that our appointment on Tuesday has been canceled. The unofficial MRI report is "no major change" according to our Physician Assistant. Dr. Gilman has us scheduled for a spinal tap on Thursday at 9:30 just to make certain there are no cancerous cells floating in the spinal fluid before we meet to make decisions on radiation. So... until Thursday, we'll be playing, playing, playing... Spencer is feeling good!

Friday, June 20, 2003 1:23 PM CDT

We've returned home from Spencer's MRI... he handled sedation beautifully today... he is still a little wobbly but is up and playing without bumping into too many things. We are scheduled to meet with the team of doctors on Tuesday at 3:00, unless there are major changes in the MRI, I won't have results until then. Dr. Gilman did say that Dr. Hornig had said he would be able to do gamma knife even if there were a couple of spots... so we'll see what is next on Tuesday. For now, we're praying for a totally clean scan results.

Thursday, June 19, 2003 6:46 AM CDT

Children's Mercy called yesterday and Spencer's MRI has been moved from 2:00 Monday to 9:00 TOMORROW!!! YYEEAAHH! Now Spencer won't have to go all day without eating/drinking. We're also getting the head and spine done this time, we were going to have to do the head on the 23rd and the spine on the 30th, so doing both at the same time is a huge improvement. He continues to feel good and be a much happier-go-lucky kid than he has been... we're praying that this also means our MRI will be a good report. I'm not certain yet when we'll be meeting with the doctors to determine what we do next, if anything, but I'm guessing it will be early next week. All prayers are greatly appreciated as we move through this MRI time and decision making time!

Tuesday, June 17, 2003 7:35 AM CDT

Yesterday's clinic visit went fine. Spencer's counts are looking good, platelets were up to 136. His red count is maintaining and his white count had dropped, but he still has an ANC of 1780 which is pretty good. He is tolerating clinic much better than he has over the past six months... really think not being on the neurontin is a hugh improvement. Since his counts were so good, we don't go back until next Monday. We will get labs done and then go for his MRI. The doctors will be meeting to make the decision as to what we do next... only time will tell. Thanks for the prayers.

Saturday, June 14, 2003 6:39 AM CDT

We've been home for a week now and it has been a pretty good week. Spencer hasn't needed any transfusions since last Saturday when he got platelets. His counts have dropped slightly, hopefully he is beginning to turn the corner towards recovery. We'll go to clinic again on Monday to check counts, if we don't need platelets, then we're on our way! His appetite is slowly increasing, he is drinking good and his activity level comes and goes. He isn't taking any naps, so I don't think he is extremely tired, he just needs to rest once in a while. He is sleeping twelve hours at night and resting quietly, so I don't think he is having the joint pain that we were having the first couple of nights home. With the humidity, he hasn't played outside much, but he really hasn't even wanted to. This next week is to be much warmer, so I'm doubting that he'll want to be out much then either. We go to clinic again on Monday, that will determine our schedule for the rest of next week. His MRI is scheduled for June 23rd which will then determine if we are going to need to do any type of radiation treatment. Until then, thanks for the prayers!

Tuesday, June 10, 2003 5:57 PM CDT

Spencer didn't require any transfusions yesterday at clinic. His platelet count seems to be holding, but we'll check it again via home health to make sure. He seems to be doing okay... still not much appetite, but we did get to stop the TPN (for now). We'll decide on Friday if we get to stay off of it. Grandma was cutting him watermelon when I talked a little while ago, so maybe he'll eat that! He seems to tire easily, but who wouldn't. For now, all is well!

Sunday, June 8, 2003 8:06 PM CDT

Spencer got another bag of platelets yesterday and then we returned home. His white count had shot way up and his red count had dropped slightly. Overall, he is doing okay. His appetite is slowly returning. He ate a 1/2 of a hotdog last night and today he has had a couple slices of ham and some macaroni and cheese, he is drinking good. He woke up from his nap with a stiff neck, but I think it is probably from sleeping on his dad's arm. He has played hard today and seems exhausted now. We head back to clinic tomorrow to get his counts checked again and to see the doctor. Hopefully we'll get to discontinue the TPN IV nutrients and return to daily eating. Thanks for the prayers.

Friday, June 6, 2003 7:30 PM CDT

WE ARE HOME!!!! We will be returning tomorrow to get counts checked and again on Monday for clinic, but for tonight we are home... his counts ANC = 5500; white count 9.9; red count 11.2 and platelets 68. Not too bad...

GLAD TO BE HOME!
Julie

Thursday, June 5, 2003 9:31 AM CDT

Spencer has an ANC of almost 800 this morning. His white counts came from .3 to 2.1 in the past 24 hours so it is looking like we'll be home sometime tomorrow, providing he doesn't spike any fevers. He was very restless last night mostly due to the joint pain that is occuring do to his counts increasing so quickly. Hopefully, today we'll be able to get a little bit of food down him. Things are looking good!

Tuesday, June 3, 2003 8:24 PM CDT

Spencer has made great improvements since Sunday. His activity level made great strides yesterday and today, with only taking one nap each day. His ANC remains at ZERO, but we fully anticipate some white counts by tomorrow. He is still on all IV nutrients and meds, hopefully Thursday we will begin transitioning to oral meds. We are beginning the IV nutrient taper tonight so that when we go home we will just be on 12 hour TPN... Dr. Gilman thinks we could go home on Friday. I'm guessing he'll need blood and/or platelets tomorrow, but then hopefully he'll be able to hold steady beyond that. He is certainly acting more like our Spencer the past 36 hours....

Sunday, June 1, 2003 11:46 AM CDT

Well it is June 1st... we've now been in the hospital for twelve days,(seems like I've been gone from home forever) hopefully another week and we'll be home. Spencer had difficulty with nose bleeds last night, took his counts and his platelets had crashed dramatically, so in the night he received platelets again. He is still having trouble with nausia/vomiting, but with the nose bleeds that is somewhat understandable. We have discontinued all of his oral meds, now he is getting IV Dilatin for his seizure control and other than he being pretty wobbly, it seems to be working fine. His ANC is 0, we hope that within the next 24-48 hours we will begin to see some improvement in this area. Our big goal is to make it 24 hours without any vomiting, then perhaps he will decide to try eating. He did make it to the playroom to play for about an hour this morning before wanting to return to his room and rest. Just not much energy!!! Thanks for the prayers and checking in on us... just kind of same old story day after day right now, but that is better than things happening all the time. He is following the schedule to the tee... now just the recovery period!

Friday, May 30, 2003 10:21 PM CDT

I've returned to the hospital after a couple of days of going to work and taking a break from here. Spencer continues to do okay... still having trouble swallowing his meds which is probably going to result in an NG tube tomorrow, but overall, he is just going through the motions as scheduled. His ANC his 152 today so likely we have hit bottom... his attitude has improved as he is no longer in isolation so he was able to get out and ride his tractor in the hall today. I think a break from mom was good for him too! Grandma does all the fun things! For now, I'm waiting for his medication to take effect and make him very sleeping so that hopefully I can get his seizure meds down him and head to bed myself. Thanks for the prayers!

Wednesday, May 28, 2003 10:54 AM CDT

Transplant with off without a hitch yesterday... just a little later in the day than we had anticipated. He ate a bowl of oatmeal last night late and seemed to have a little more energy. He played with the nurses for awhile yesterday evening. This morning, he woke up being "Oscar the Grouch"... didn't want to take his meds, do his mouth swabs, have his diaper changed, take his temp, blood pressure, weigh... everything has been a big deal! I think another nap is in store very quickly. His vitals remain good... his counts are dropping, he will get platlets either this afternoon or in the morning. He is going to be started on TPN (IV Nutrients) today so we won't have to worry so much about calorie intake. Hopefully in 7-10 days we'll be recovered and headed for home. Mom is going to come to stay tomorrow and Friday so I can go home and do a few things there and take care of some school things... a break from here. I'll be returning on Friday, hopefully it will rain soon so Spencer's Dad can come for a visit, but as the saying goes, "One must make hay in the sun of the day"... so dad is home mowing/raking/baling hay.

Tuesday, May 27, 2003 11:33 AM CDT

Today is transplant day. Overall Spencer is doing okay. He is retaining fluids so he has a puffy look, probably going to begin some lasix to reduce that. His counts have certainly crashed... so has the energy level. He still has his humor and smile though... it just takes a little more to see it. Transplant will be about 2:00 today. The sun is shining and it is going to be a beautiful day! Thanks for the prayers, he's doing exactly what is expected of him medically.

Sunday, May 25, 2003 6:48 PM CDT

Spencer has spent the majority of today either in the rocking chair asleep or in his bed asleep. With lots and lots of antinausia meds, we are keeping that undercontrol, but we can't get him to eat anything. His counts are crashing dramatically today, part of the reason for him being so tired. We took our last 6 hour bath at 4:00 this afternoon and returned to regular diapers. Now we will just have a daily bath. Tomorrow we will be able to return to his normal hickman dressings to protect his lines. His skin remains looking very good. He spiked a fever today, so we had to draw cultures and start another antibiotic for that. The doctors think he will be a little more active and alert tomorrow.

Until then...
Julie

Friday, May 23, 2003 4:30 PM CDT

Day 2 of chemo is over, Spencer continues to feel pretty good. His daddy came to visit today, so that certainly perked him up... he even ate a little lunch with him. We have one more day of chemo, we have 7 or 8 more baths to go and two more days before we return to regular diapers. (Not counting the days or anything)! So far Spencer doesn't seem to be nausiated, he just isn't hungry and isn't drinking much. Transplant still scheduled for 2:00 Tuesday.

Thanks for the prayers.

Julie

Wednesday, May 21, 2003 9:13 PM CDT

We are admitted and in room 4623. Spencer has done pretty good today... we had a few outburst in clinic and a little irritability since coming to the floor, but considering he hasn't had a nap today he has done really well. Hopefully bedtime will be coming soon. Chemo will begin in the morning, depending on the start time, bath time will follow 6 hours later and every 6 hours thereafter until we are 24 hours post chemo which will be Sunday afternoon. Transplant will be on Tuesday afternoon. He is enjoying his farm equipment on the floor driving it on my mattress pad for my bed... he says the bumps are just like daddy's field. Whatever it takes for entertainment!!!

Monday, May 19, 2003 10:24 AM CDT

Wow it has been over a week since I posted... time does fly. Nothing much new... Spencer's counts, including his white count, have finally started to rebound. On Friday he had his MRI, I've not heard official results, but am assuming "no change" since I haven't heard anything. Dr. Gilman was at Transplant Conference on Friday, but assured me that if anything changed he would be paged and would notify me immediately. We are scheduled to admit on Wednesday of this week for round 2, our final round!! Spencer seems to be feeling very good, other than still quite irritable when he isn't having a good day. We've began talking about going to the hospital and staying, so far he seems okay with it, but I'm certain admit day will not be so "fun". Oh well... we'll just pray that it is the last "admit day" we have. We anticipate a 2-3 week stay again this time. In between doctor's appointments, I've managed to get some outside spring work done, Rob has managed to finish planting his beans and is thinking about getting the hay equipment ready. Life is never dull!

Sunday, May 11, 2003 9:03 AM CDT

A very spencial thank you to the Cameron FFA members, advisors and their parents who worked very hard to make Spencer's benefit dinner a huge success. The kids sold approximately 300 tickets to the supper. Several of our dearest friends prepared the food, ham, potato casserole, green beans, bread, ice cream and cookies, and served nearly 400 people before the night was over. It was so amazing to see the support from our community. The kids also had some nice items and sold raffel tickets for those and then did their traditional "Labor Auction" where the individual FFA members were auctioned off for a day of work. The proceeds from the supper and raffel went to Spencer with the auction proceeds going to the FFA kids to help them travel to Louisville KY for National Convention next fall. Spencer wasn't able to attend due to his low counts, but a nice evening was had by all!!! THANKS AGAIN TO A WONDERFUL GROUP OF KIDS AND PARENTS THAT MADE THE NIGHT A TOTAL SUCCESS!!!! And a very special THANKS to all of the people that have contributed to Spencer's benefit.

Tuesday, May 6, 2003 5:26 PM CDT

Spencer's clinic visit yesterday resulted in higher platelets, stable red count and lower white count putting his immune system even more at risk. We are still a little above starting the GCSF shots though. He is still feeling okay... however, he has lost some weight so they will be watching that closely in concern of not eating enough or dehydration. He seems to be eating okay here at home, but the drinking is another story. Grandpa Kenny is bringing some watermelon home from Florida tomorrow, so maybe that will increase his fluid intake! He loves watermelon!

Saturday, May 3, 2003 12:56 AM CDT

Spencer continues to feel relatively well. His appetite has increased somewhat, and he is drinking a little better. He remains tired and irritable, but who wouldn't be with counts like his. The best description I can give is that he kind of acts like he needed a nap several hours ago... all of the time! As long as he is getting his way and doing what he wants, he is okay, but going to clinic and doing much of anything else is major! We go back to clinic on Monday afternoon to check the counts again... hopefully they will be a little higher so that we won't have to start the GCSF shots!!! Thanks for the prayers.

Tuesday, April 29, 2003 9:47 AM CDT

Spencer is recovering very well. We went to clinic yesterday and saw Dr. Gilman... his platelets are starting to rebuild on their own now, his hemoglobin had remained stable and his white count had dropped, but we expected that since he isn't on GCSF anymore. His energy level is good, his appetite and drinking... not so good, but they went ahead and agreed to discontinue the TPN at night and see how he does. We'll see how he does this week and make a decision on Friday as to wether we need to return to TPN, fluids or continue as we are. So now, we just are praying for no fevers with his white count being low again. Any fever at all lands us back in the hospital for antibiotics! Hopefully, we'll remain healthy... we had some nice rain again yesterday morning and a little more this morning, calling for more tonight and tomorrow... prayers are being answered everywhere!

Sunday, April 27, 2003 8:42 AM CDT

Went to the hospital yesterday to get Spencer's labs checked... he is holding his own... his platelet count was exactly the same as when we left the hospital Thursday, 62, so just a little above transfusion level of 50. His hemoglobin had actually increased slightly and his white count had dropped from 7.9 to 6.0 which we expected. Overall, he is doing very well considering only 12 days post-transplant. We are still doing IV nutrients until Tuesday night... we are still dealing with some nausia/vomiting about every-other morning and are dealing with some diarreah issues every morning until I get him to eat something... hopefully this will subside once we get off the TPN. His activity level is good, although when he gets tired he gets dark circles like he's never had until this whole transplant process. Yesterday, he put on his mask for a little while and rode his bikes outside, didn't even argue about the mask... he just knew that was the only way he could be outside... we go back Monday to be checked again and to meet with the doctors.

Thursday, April 24, 2003 5:06 PM CDT

WE ARE HOME!!! Spencer's white counts have come up quite a lot... We go back for count checks Saturday morning and to see if he needs platelets or blood. Then we are scheduled to go back Monday/Wednesday/Friday of next week... so for now we are glad to be home and will be spending a lot of time on the road for clinic appointments!

Tuesday, April 22, 2003 9:13 PM CDT

Spencer continues to do well. He got platelets again today, but he finally had some white cells show up today. Dr. Gilman anticipates them increasing rapidly. I spent last night at home in my own bed, seemed like forever since I'd been there, worked at school this morning and then back to the hospital... mom stayed with Spencer. Dr. Gilman is thinking that Spencer could be ready to go home by Friday or Monday... we'll see! I'm not packing yet! Once we are home, Spencer will be restricted to inside the house at home and then back to clinic every two or three days to check his counts, but at least we'll be at home, providing we don't have fevers. Miracles do happen... prayers are answered!

Sunday, April 20, 2003 8:50 AM CDT

HAPPY EASTER!!!!

Spencer is going to get platelets today to start off his Easter morning... his counts were down to 33 this morning. He has woken feeling pretty good... wants to know when his daddy will be here. The Easter Bunny has been to Children's Mercy... Spencer will have a day filled with finding surprises throughout the unit! We parents are being served an Easter Brunch in the parent room this morning including Honey Baked Ham, Homemade Rolls, Salad, Potato Casserole, etc... almost like home! We are anticipating Spencer's counts to start turning around within the next 1-3 days, then it will just be a matter of time until his ANC > 500 to allow us to return to home.

Thanks for all of the prayers that are helping to get Spencer, Rob & I through this.

Happy Easter
Rob, Julie & Spencer

Friday, April 18, 2003 8:44 PM CDT

Another day... Spencer received a half unit of blood today, hasn't had a nap all day and is still going strong now. He is still feeling very well... he didn't eat much today and has drank nearly nothing... however, with IV fluids/nutrients that is not our most important issue... he did eat a breadstick and some noodles tonight. Overall... I'm amazed that he continues to look and feel so good!

THANKS FOR THE PRAYERS!

Thursday, April 17, 2003 9:59 AM CDT

Spencer was so excited to see his daddy last night... and even more excited to find out he was spending the night. Spencer spent most of the evening lying in bed with his daddy! This morning, he has had his bacon to eat and is working on drinking his milk... not eating a lot, but every little bite counts! His ANC has hit ZERO... his platelets and red counts are still a little above transfusion points, probably tomorrow or the next day. As for now, he continues to do really well... and mom gets a little break today since dad is here!!!

Wednesday, April 16, 2003 3:38 PM CDT

Spencer is still doing amazingly well. Yesterday, he only took a 45 minute nap and then kept me up until midnight, just watching movies and reading books. He was up bright and early this morning. We have had a little more nausia/vomiting today and he isn't wanting to eat much so they will begin TPN (iv nutrients) later today as we anticipate the nausia/vomiting to be followed by mouth sores making it even harder for him to eat. He is finally napping today... overall, other than pushing his luck with mom's patience, he is doing pretty good! Better than I had expected at this time in the process. Hopefully we are about half way done with this process. His ANC went from nearly 1600 yesterday to 1000 today, so we are certainly on our way down... we must go to zero then return to 500 to go home.

Thanks for the prayers...
Julie

Monday, April 14, 2003 5:28 PM CDT

Transplant is complete... Spencer is doing fine... he has tolerated everything fine up to now. His nausia/vomiting is much improved... his energy level is dropping, but he still is able to be up and around quite a bit.

Sunday, April 13, 2003 2:59 PM CDT

We have returned from surgery and have new lines. The surgery went better than it did last Tuesday and Dr. Holcomb put in some extra stitches so hopefully it won't happen again. We'll be able to return to our normal hickman dressings tomorrow at noon. Spencer is still pretty out of it right now, but is drinking and says he is okay.

He asked to have his mask put on in the recovery room so that he could come back to his room.

Stem cells tomorrow at 2:00.

Saturday, April 12, 2003 6:21 PM CDT

The good news: We're finsihed with the every 8 hour baths and the cloth diapers.

The so-so news: Spencer started vomiting last night, but has done pretty good today. He got sick early this morning, but later kept his meds down as well as ate a lot of watermelon that mom brought to him.

The bad news: His hickman pulled out today after he took his noon bath. We had to put an IV in his arm and will be going to surgery first thing in the morning to have another hickman put in. Dr. Holcomb is going to be our surgeon again so he knows what he is dealing with since he just did this last Tuesday. Mom felt really bad since she was here with him, but I actually think it came loose last night when I did his bath... he cried for an hour that I had pulled his line. Things happen!!!

Transplant is still on schedule for 2:00 Monday afternoon.

Friday, April 11, 2003 3:03 PM CDT

Chemo is now complete... just 24 hours more of cloth diapers and baths and we'll be down to actually getting the transplant. Spencer's activity level has been lower today, but other than that he is still doing well. He ate his oatmeal and is drinking his Dr. Pepper.

Keep the prayers coming!

Julie

Thursday, April 10, 2003 2:34 PM CDT

Day two of chemo is now complete, and other than some really dark circles around his eyes, he is still doing very well. He is eating and drinking good and loves to play with his toys and playdough. The 4 AM bath was a real treat... a pretty quick one!! He told my mom that he had to get up in the middle of the night to take a bath and that was a really silly time. So far he has not been sick... hopefully that continues. One more day of chemo... two more days of cloth diapers... six more baths... stem cells come on Monday.

Keep the prayers coming... miracles do happen!

Julie

Wednesday, April 9, 2003 2:31 PM CDT

Chemo is going as scheduled. We started about 9:00 this morning and just finished a short time ago. We started the baths at noon, and will have one every eight hours until noon Saturday. He is in cloth diapers, and doesn't like those at all... so perhaps we might get potty training accomplished yet! He is feeling good so far... getting through clinic yesterday was a real trip... I only have two bruises and I don't think Spencer got any... he finally calmed down once we got to our room. We are in room 4623. We anticipate nausia/vomiting to start later today, but hopefully we'll be able to keep it under control with the antimeds. So far so good... by the time I got Spencer to bed last night, I crashed... got up at 5:30 this morning to have a little "me" time before he awoke at 7:30... he is napping now. We'll do a bath again at 8:00 tonight and hopefully I'll get him to sleep shortly after that... the next bath will come at 4:00 AM...

Until later...

Sunday, April 6, 2003 11:28 AM CDT

MRI results from Friday... the spot in his head remain totally unchanged... his spine remains totally clean!!!! They placed a foley catheter to do a 24 hour unrine collection... we completed that at 4:30 Saturday afternoon, Aunt Margaret helped us remove the foley and then the sample went to the hospital. We will admit on Tuesday to begin transplant. I can be reached by email at the hospital at spenjulie@hotmail.com or leave messages on the webpage! I'll have a computer in my room, so I can update on a regular basis.

Thanks for the prayers and thanks for checking in on us!

Friday, April 4, 2003 8:20 PM CST

We're returned home from our long day including an EKG at 8:00 AM followed by his MRI, Echo & foley placement at 3:00 PM. I saw Dr. Gilman as we were leaving the hospital and he asked me to call him when I got home as he was headed to radiology to read Spencer MRI results... THE RESULTS ARE STABLE!!! No changes to his head and his spine remains clean.... so on to transplant next week. We are to admit to the hospital on Tuesday and begin chemo late in the night/early Wed morning...

Thank the lord for another stable MRI!!!

Monday, March 31, 2003 7:18 PM CST

Children's Mercy called about 5:15 tonight to let me know that Spencer is to be there at 7:30 in the morning. He will have an ultrasound done of his chest, neck and arms and then proceed to surgery at 9:00 to have this hickman finally replaced. Hopefully this one will work much much better!!!! Friday, we are to have his echocardiogram done at 8:00 and his MRI at 3:00... what a great day... no food after 9:00 AM and no drinks after 12:00.... he should be one happy camper by the time we get to the MRI!!!! Our schedules can never be predicted!!!

All prayers greatly appreciated... prayers for Spencer's health and especially for my sanity!!!!

Saturday, March 29, 2003 7:24 AM CST

Spencer's cold/sinus infection is finally improving. He went to daycare yesterday morning for the first time since October and I think had a blast. Of course, it was a little difficult having to share and be a part of a group, but he had a good time... he is going to go back next week for a few more days before we start transplant. We met with the transplant team on Wednesday afternoon (my screw-up on the schedule)! We will proceed with transplant as scheduled unless there would be a large change in the spot in the MRI this coming Friday. Dr. Gillman is anticipating a 16 - 21 day hospital stay, home 1-2 weeks, then the second transplant. Following the second transplant, we will have several clinic appointments each week checking counts, getting blood and/or plateletts, etc... for those watching counts, we won't be able to come home from the transplants until Spencer's ANC>500 (we are running about 1200 now, with around 2500 being normal). Until we return to normal, Spencer will have to be very careful about encountering infections... bacterial, viral, and especially fungal... so his time outdoors will be pretty limited for the summer (that is the big bummer!!) He can't play in the dirt, sand, even the grass... until his counts recover! Of course, if we don't get some moisture, molds shouldn't be a real big problem this summer!!!! At any rate, I'm just ready to get everything started... each day after we start is one day closer to having it over with!!! And yes, the pre MRI stage is hitting as well... by the time we get admitted for transplant... I'll be ready to sleep!!! Dr. Gillman also expects Spencer to feel relatively well and be up and active during the majority of our stay... he said there will be 2-4 days that he probably will sleep more, but other than that he'll be busy... we can have visitors so long as our visitors don't have colds or fevers!!! I'm packing my "sanity kit" including intricate pages to color (yes that is my favorite passtime), a 4000 piece jigsaw puzzle and chocolate! Our longest hospital stay prior to this one has been nine days, so this will be an experience... I'm trying to convince myself for thirty days so that anything less will be a celebration!!! Thanks for the continued support and prayers!

Monday, March 24, 2003 3:53 PM CST

What a day... Spencer awoke this morning crying that his ear hurt... a big flag as he never complains about anything! I called Children's Mercy, we decided he could just go to his regular pediatrician... wow...almost normal!!! I called there and got a noon appointment so they wouldn't be so busy... at 11:10 Spencer had a seizure. We went on to our 12:00 appointment in St. Joe, with suitcases packed incase we needed to go on to KC... Dr. Viligati made phone calls to KC, we talked with a neurologist and it was decided to change Spencer to Keppra from his Neurontin... however, this will take some time, Spencer had a second seizure while at Dr. Viligati's office. We started Spencer on Zithromax for his major ear infection (but only in one ear) and were to give him another dose of Neurontin when we arrived home, plus his dose of Keppra. He had seizure #3 while we were headed out of St. Joe and now has had seizure #4 when we arrived home. I've gotten his medicine down him, if seizure #5 occurs than I have Diastat to give which should stop them. What a deal.... anyway, now the schedule is on Thursday to be at Oncology Clinic in the AM to get labs and Pentam, meet with the Transplant team at 1:30 and then meet with the neurologist at 3:00 to see what his Keppra levels are. IT NEVER ENDS!!! So much for playing outside in the sun on the new swingset........ oooohhhhh wwwwweeeeelllll!!!

Saturday, March 22, 2003 1:19 PM CST

We got home late yesterday afternoon, Spencer is doing pretty good... with the good weather forcasted for this weekend, I'm certain he'll enjoy being outside. We meet with the Transplant Team on Thursday of this next week, have his MRI on Apirl 4th and providing no changes... start transplant the next week. He does have a really bad runny nose which needs to improve before we go to transplant, hopefully it will!!!

My sister is home and is improving daily, Katie is still in the hospital, but doing good... she has been moved into an open air isolette and is starting to be able to nurse. Hopefully, she'll be home before Spencer goes in for transplant.

Friday, March 14, 2003 5:35 PM CST

Spencer and I are home from another week of chemo... his cold didn't stop anything. His ears, throat and lungs were good so we proceeded. He started getting sick mid morning today, but is doing better now.

Rhonda & Katie are both doing much better. Katie is now in an isolette and Rhonda is now in a regular room at Overland Park Medical Center. I'm certain she'll still have several upcoming appointments and follow up with all of the heart-lung issues, but for now, she is improving daily.

Thanks for the prayers.

Wednesday, March 12, 2003 6:25 PM CST

Updates...

Spencer's cold seems to be more of a head cold now rather than so much in his chest... we'll see what they think when we get to clinic tomorrow morning.

Rhonda (my sister) is off the respirator as of mid afternoon and was able to hold the baby for a short period of time. They are still keeping her fairly sedated so that she can rest as much as possible. Still not out of the woods with this whole heart thing but is one step closer.
We believe the baby's name is going to be Mary Katherine "Katie" for short. She is doing just fine, has remained off oxygen and is doing good.

Tomorrow, mom is going with me to help get Spencer through clinic, then she'll travel across town to check on Rhonda then return to Mercy so that I can go to see Rhonda and the baby.

Sue (my teacher friend) is home now and is starting the home health routine to help with her healing, but is doing pretty good. She still has a road ahead of her before returning to work, but is very positive!

Thanks for all the prayers...

Julie

Wednesday, March 12, 2003 6:24 AM CST

Hi all... Spencer continues to have his cold, a little croupy in the night, but overall feeling good. He doesn't want to take naps, so I know he is feeling pretty good. We will do hydration tonight and then start chemo again tomorrow. Hopefully we can get started pretty early so we can get home early on Friday since the weather is to be absolutely wonderful (near 70).

I ask for prayers for my sister and her family. She delivered a 4 lb 5 oz little girl yesterday, but returned to ICU after her C Section on a respirator and dealing with Congestive Heart Failure. Her baby is doing very well, but she, on the other hand, is struggling. As of last night, she still didn't know she had a baby and therefore, the baby doesn't have a name yet. She was 33 weeks along when the heart failure became an issue. Extra prayers appreciated.

Thanks

Saturday, March 8, 2003 8:11 AM CST

Another week of chemo down, we did the prehydration on Wednesday night and that really seemed to help with the kidney functions. We got through clinic and were to the hospital before noon so we got discharged about 2:00 yesterday. Spencer made it through the day yesterday without vomiting, however, this morning, he awoke not feeling well. I think he's maybe picked up a cold as well.
Two more weeks of chemo... MRI April 4th and then transplant on the 7th. Please say a prayer for my teacher friend Sue as she is now in the hospital fighting a staff infection (not good as she is also a diabetic).

Friday, February 28, 2003 8:39 PM CST

The new and updated plan... chemo for three more weeks then transplant to begin the first week in April.

We experienced seizures again yesterday, 5:30, 7:00 & 8:00 followed by a dose of Ativan and that stopped them... don't have a clue why. Chemo went on as scheduled and we got home about 6:00 this evening. On the way home, the hospital called and said his last labs were bad, potassium & calcium were extremely low... so after eating supper we went to the Cameron ER to have labs drawn again and rechecked... all is okay! Just got home from there and we're headed to bed! Rob thinks he is getting a cold and I'm exhausted. After the Ativan Thursday evening Spencer slept very hard until about 12:30 AM.... then he decided it was morning and he was ready to play so not much sleep last night...hopefully we'll make it through the rest of the weekend without any unusual mishaps!!!

Thanks for the prayers.
Julie

Tuesday, February 25, 2003 10:20 PM CST

We have a plan... kind of!!!

We are starting chemo again Thur/Fri of this week. We will proceed with the same chemo we've been getting which is cisplatin/irinotecan until they can get us scheduled and the testing completed to begin stem cell transplant... we've already harvested the cells. We'll do stem cell transplant and then do a gamma knife treatment following transplant if the spot remains.

So..... we're back to packing the suitcase and being the frequent flyer at the hospital... better to be a frequent flyer than a full time resident, but we'll be that soon!!!

For now, Spencer still continues to feel absolutely wonderful... the best I've seen him feel in sometime. His attention span is improving and although he still has his bouts of being a 3 year old, overall, that is improving as well, hopefully we won't revert too much with returning hospital stays!!!

Thanks for the prayers...

Julie

Wednesday, February 19, 2003 2:20 PM CST

The good news... Spencer's red count and plateletts have returned to normal with his white counts still be a little low, but improving. He is feeling good.

We didn't get to meet with the doctor's today because they have not totally decided what plan of attack we are taking. We are considering surgery or gamma knife, with indecision on stem cell transplant/radiation or the order in which we are going to proceed. At any rate, lots of opinions are being gathered and hopefully we'll have some direction by the end of the week. If all else fails, we will continue with the weekly chemo next Thursday.

Until then we're enjoying the good days we're having and loving our time out of the hospital.

Monday, February 17, 2003 12:50 AM CST

I talked with the hospital this morning... we have an appointment with Dr. Emami on Wednesday to discuss what we are going to do. Dr. Hornig (the surgeon) says that Spencer is a candidate for surgery or gamma knife and he also recommends some radiation. I'll know more of where we are headed after our meeting on Wednesday. Spencer continues to feel good... continues to be a very onary little three year old who thinks he is old enough to do whatever he wants!!! Kind of nice to have a break from the hospital!

Thanks for the prayers.
Julie

Tueday, February 11, 2003 2:25 PM CST

It has been a very stressful morning and taken forever to get the results, but... Once again prayers have been answered. Spencer's scans remain stable!!! His spine remains clean. His spot from November has not changed at all. They also did an additional enhancement to check for increase in depth and that too has remained unchanged! Spencer's scans now are in the hands of his neurosurgeon to make the decision of doing surgery or not. If he thinks surgery is the best option... to surgery we will go. If he doesn't think surgery is the best, then we'll be going to stem cell transplant soon. At any rate, we're going to enjoy the rest of this week without doctors appointments and chemo treatments and celebrate another STABLE SCAN!!!

Thank you for the prayers!!!
Julie, Rob & Spencer

Monday, February 10, 2003 5:35 PM CST

Spencer made it through the MRI process without any problems, but we haven't heard any news yet. Hopefully, I'll get a call in the morning! If I haven't heard anything by noon, I'll call them. Keep the prayers coming that perhaps it is smaller and they are really having to compare from last months MRI!!!!

God Bless
Julie

Saturday, February 8, 2003 10:32 AM CST

Spencer did better this week! Thank goodness!!!!We spent the entire day in clinic waiting for a bed up on the floor. We even started chemo in clinic and finally got to the floor about 5:00 PM. Spencer had a couple of meltdowns (drew blood on my face once and bit once) but other than that he did much better. Friday, he was very good! He started getting sick on Friday morning as usual. We made it home about 3:00 on Friday afternoon. This morning, he got sick once, but then ate breakfast and seems to be doing okay. MRI is at 11:00 Monday.

Thursday, February 6, 2003 7:19 AM CST

We're off for chemo (possibly our last week). Yesterday, Spencer really didn't want to talk about going today, so I am not anticipating a good experience getting him through clinic and admitted to the hospital... maybe he'll surprise me. He was on fluids all night, so hopefully we'll be ready to roll with chemo when we get there. Our schedule is, chemo today, come home tomorrow evening, return on Monday morning for his MRI at 11:00. We will be hoping for results late in the day on Monday. If smaller... we'll continue what we're doing. If stable... investigate possibilities of another surgery, if yes... surgery then transplant; if no... transplant then some radiation of some sort. If larger... surgery becomes more urgent, transplant & radiation. He has been feeling really good... took him to a basketball game on Tuesday night so he could draw the raffle winner that our Student Council did in his behalf, he just didn't understand why he couldn't play basketball with the big boys. Let's just say, Spencer isn't real well behaved in public settings at this moment... could be 3 1/2 could be the fact that he hasn't ever really got to go to things in public... could be he's just becoming a very spoiled brat that is fed up with people... oh well, he did a nice job with the drawing and had a good time. I keep telling myself, just be glad he feels good enough to be a brat and with some steady discipline and hours of time out... "this too shall pass!!!" Keep the prayers coming... we're still hoping for our miracle!!!

Friday, January 31, 2003 at 09:24 PM (CST)

Spencer has completed one more week of chemo with only a few delays. His kidneys were in good shape this week! We got chemo started about 5:00 on Thursday afternoon after an awful fit throwing time in clinic. For the first time, Spencer really didn't want to go to the hospital and did not handle clinic well at all. His hickman didn't want to work so that was an ordeal to start with... finally got the labs then to our room at 1:00, took a while to get his UA back, then started the magnesium, then 2 hours later... chemo. He started throwing up about 8:00 this morning. We were to come home at 6:00 this evening, but... about 4:45 they came in to hang his Pentam since bactrim orally seems to be making him sick now and we discovered that his hickman line had a "blowout". We had a delay waiting for the "repair lady" to come and repair his hickman line... at least we didn't have to go to surgery to get it replaced this weekend. Finally got headed home shortly after 7:00. Spencer's days has been pretty much filled with nausia/vomiting and that has continued here at home... he did finally keep his seizure med down here at home, after the second try. We're headed to bed and hoping that tomorrow he feels better... I'm sure he will. Chemo again next Thursday/Friday followed by a MRI on February 10th... this is the big one to determine what we do next....possibilites include surgery, more chemo, stem cell transplant... only time will tell... praying for a MRI that shows a smaller spot!!!!

Saturday, January 25, 2003 at 07:18 AM (CST)

The week certainly flew by... Spencer had another episode of seizures beginning on Wednesday morning. Monday/Tuesday he had a few epsiodes of vomiting and a couple of loose stools... kind of thinking now a possible bug. Because of these things, he wasn't keeping his seizure meds down very well... so he started having seizures. Had about 5 or 6 by the time we ended up at the hospital... we were just ready to walk out the door when they came on the news that the bridge on I35 had been shut down, so we knew we might just as well stay home for a while and let rush hour clear out, so we didn't leave until about 5:45. He had one seizure on the way down there and another one after we got there, they gave him a loaded dose of IV antiseizure meds and that was the end of them. Neurology came to see us on Thursday, checked him out, agreed that was most likely the cause, increased in meds a little and changed it to twice a day rather than three times per day so perhaps he'll take it better. They cleared us, so then we began the chemo process, kidneys were pretty much okay, but it was 10:00 PM Thursday night before we hung the Cisplatin which means our discharge time was 11:00PM Friday night. Rob came back to get us, so we arrived home about 12:15 AM this morning, but at least we get to wake in our own beds! Spencer has been able to avoid vomiting/nausia to this point, perhaps the extra IV antinausia he got on Wednesday night helped, we'll see how today goes. We report at 9:00 Thursday morning for the next round. The other good news was his counts had actually improved ANC = 1635; last week it was only 1150 and must be 1000 to start chemo.

Monday, January 20, 2003 at 06:51 PM (CST)

What a nice weekend!!! It finally seems like we've had a little break... (christmas was just kind of a blur of activity). Spencer is feeling very good. His nausia/vomiting ceased on Friday and his being a normal little fit throwing three year old certainly returned. He spent Sunday with my mom so that a friend and I could have a "girls day out shopping trip to Kansas City"... found some good after christmas bargains and had a great afternoon. I think this is the first "day out" mom's had since the very first part of December!!! Today, Spencer and I have just hung out... we played out in the machine shed this morning while dad had the heat on, we baked a cake and played... he decided he didn't need a nap today, but we layed around for and hour and a half just in case he decided to fall asleep, he didn't. Only a couple of time outs for fits today... overall a pretty good day a very much needed relaxing weekend!!! Back to work Tuesday and Wednesday then return for chemo on Thursday and Friday! We're going to do fluids here at home on Wedndesday night so hopefully we'll be able to move right into chemo on Thursday and keep his kidneys doing better!!!!

Friday, January 17, 2003 at 06:11 AM (CST)

We arrived home about 10:30 last night, but at least we were home. Spencer was pretty restless through the night, the nausia/vomiting are certainly still present, I expect that to decrease as we go through today, not much sleep was accomplished, but we're home. He was certainly glad to see his daddy and sleep on his pillow. Chemo went as scheduled with just the normal nausia/vomiting starting 12 hours post chemo. Spencer had a good time telling the nurses all about his big tree and helicopter ride. He was much more eager to talk about it this trip than he was right after christmas... perhaps, Santa isn't so far down on his list anymore!

Friday, January 10, 2003 at 04:52 PM (CST)

PRAYERS HAVE BEEN ANSWERED!!!! Our nurse called a little bit ago to tell us that Spencer's MRI is stable... the first stable one we've had since surgery in August. I never knew I'd be so excited with "stable", but it sure beats the report of "new possible tumor activity" that we got in November. We will begin another four week cycle of Cisplatin & Iriontecan text week followed by another MRI. Thanks for the prayers...
Julie

Friday, January 10, 2003 at 03:22 PM (CST)

We're home from the MRI... all went as planned. Spencer did fine with the propophol, as usual. They were able to get us in on schedule and he did fine with the MRI. NOW THE WAITING GAME>>>>> don't know if I'll get results yet today or not, I've left messages on emails reminding that I would like results ASAP regardless of the report being good, bad or no change. I know sometimes doctors think that giving bad information over the phone is not positive, but no knowing is worse!!! Even bad news, at least I know! We're praying for good reports!!!

Wednesday, January 08, 2003 at 07:15 PM (CST)

Things are looking a little better... Spencer has improved much and felt much better than he did on Sunday. He is eating good and for the most part, being a very normal, very spoiled 3 year old. The hospital called yesterday and moved Spencer's MRI from 4:00 Friday to 1:00 Friday, a much better plan. Atleast he doesn't have to go ALL DAY without eating and there is a slight chance we might actually get results on Friday afternoon. I still won't be surprised if it is Monday, but a better chance than we had. The kids at school have been pretty calm this week... thank goodness since I'm not sure how much my nerves would handle... perhaps they can sense that!!! We're crossing our fingers, holding our breaths, and praying a lot!!!!

Monday, January 06, 2003 at 06:27 AM (CST)

Our weekend has flown by, Spencer felt really good on Saturday then had a mysterious day on Sunday. In the morning, we went to breakfast, then to get the grain-vac at Hamilton and then home. When we returned home, he wanted to go in the house rather than go with his dad to feed cows, so we did. He complained of his leg, he complained it hurt when he went potty, I'm thinking possible kidney/bladder infection... we'll see how today goes. In the afternoon, he napped a lot. His cousin Alex was here, they would play hard for about 20 minutes then Spencer got up and laid on the couch and WENT TO SLEEP!!! He had a couple of sweating spells, one possible "seizure" activity... however it was so quick I couldn't decide if he was actually having a seizure or just trying to fall back to sleep. However, then I realized, he hadn't had his antiseizure meds at all... gave him that quickly. After a couple of hours, he seemed much better.... why does he always have to do these things to me when it is MRI week? He finished out Sunday acting very normal... guess we know we're not going to be tapering off the antiseizure meds after the MRI... which is FRIDAY!!! What a nervewracking week this is going to be... Friday MRI, won't get results until next Monday probably, maybe even Tuesday... oh well, at least we went to bed with him feeling much better, I even slept. We'll see how he wakes up and gets through today! KEEP THE PRAYERS COMING.

Wednesday, January 01, 2003 at 07:47 AM (CST)

HAPPY NEW YEAR TO ALL... WE HAVE MADE IT TO ANOTHER YEAR!!! AMAZING!!! TIME DOES SEEM TO PASS SO QUICKLY THESE DAYS! SPENCER IS STILL FEELING PRETTY GOOD, ONLY WANTS TO EAT TOAST MOST OF THE TIME, BUT IN GENERAL, DOING GOOD. WE HAVE BEEN ABLE TO PLAY OUTSIDE A COUPLE OF AFTERNOONS, HE LOVES THAT! I RETURN TO WORK TOMORROW, THE KIDS DON'T COME BACK UNTIL MONDAY, SO AS IT SEEMS, MY HOLIDAY BREAK IS NEARLY OVER AND I FEEL LIKE IT HASN'T EVEN STARTED, BUT, NO REST FOR THE WEARY... WE'RE PRAYING FOR A HEALTHIER 2003 FOR ALL!

Sunday, December 29, 2002 at 12:08 PM (CST)

Our weekend has been pretty good. Although, Spencer continues to have bouts of vomiting, in between, he feels really good. He is enjoying all of his new things he got for Christmas. It just seems that if he eats or drinks too fast, it doesn't stay down. Back to the sippy cups, they limit him gulping down liquids which really seems to help. He is drinking good and eating average. He ate some pork roast last night, he really likes that! He's asking for a cheeseburger again so I'm sure that will be supper tonight, good thing McDonalds isn't very far away. He would most often rather eat McDonalds than anything else! We don't have any doctors appointments until Friday of this coming week, we'll check his counts then... they were getting lower when we admitted for chemo... ANC 1100; had to be 1000 to start chemo, but above 500 is good, so we have a little ways to go. His white count was down to 2.6, but it has been to zero before... his red counts and platelettes were both holding very well... just a little low. Hopefully, we'll enjoy the New Year at home, last year we were in for chemo! Happy New Year To All... We're praying for a healthier, tumor free new year!!!

Friday, December 27, 2002 at 05:42 PM (CST)

We're home from chemo... the last until after the MRI on January 10th. He is feeling really good. He got sick last night at bedtime, but has been good today. He wanted a cheeseburger from McDonalds on our way home and he ate the entire thing! Hopefully it will continue into the night!! Spencer's exciting adventures from Christmas Eve can be found in the "history" section of his webpage.

Thanks for the prayers.
Julie

Thursday, December 26, 2002 at 07:00 AM (CST)

Christmas Eve, what a night... the fire trucks arrived about 5:30 with all their lights, etc. The helicopter arrived about 5:40 and Santa arrived. Spencer was a little apprehensive about Santa to start with, but once he started talking about tractors, Spencer tuned right in. They planted the magic acorn, watered it with magic water and away they flew in the helicopter, Spencer & Santa. They flew to the plaza and saw the slights and flew over Arrowhead then returned home to see a beautifully decorated, lit up 30' Oak tree right were Spencer's acorn had been planted. Spencer was ready to see mom and dad again when they got back on the ground, but when we returned from Grandma's from Christmas he said, "See my pretty tree, Santa and I grew that!" so he understands! He has had a good Christmas, we had Rob's family at our house yesterday and then some friends to help clean up leftovers last night. Today we head for the hospital for our last round of this chemo schedule. Hopefully we'll get some rest!!! MRI is January 10th, that will determine what happens next! Thanks for the prayers that got us through Christmas in good health!

Monday, December 23, 2002 at 07:42 AM (CST)

Spencer's nausia/vomiting did pretty much end when we got home on Friday night. He woke up about 4:00 am Saturday morning, came to our room and said with a very strong voice, "Is it morning?". He then got into bed with us and went back to sleep, but I knew he was feeling much better just by his voice. Saturday we had Christmas at my mom's. Spencer did eat some, and kept it down. He had a good time playing with Alex, my brother's little boy. My sister and her little boy had to stay at home as they are both not feeling well and we can't take those chances with Spencer. The rest of our holiday schedule is a busy one... today, Christmas Party at Daycare, providing the kids seem to be feeling okay... will call later and check that out. The people from the Elves Club are coming at 1:00 to get everything prepared for Spencer's surprise Christmas which is to happen tomorrow afternoon. Tomorrow night, we go to my dad's family for Christmas. Of course, we'll be at home on Christmas Morning to enjoy Spencer and the magic of Christmas. Rob's family is coming to our house for lunch Christmas Day, so on top of all of these other activities, I've got to get the house ready and the food ready... the house is the major part... I HATE TO CLEAN! But, it is getting there!!! We return to the hospital on Thursday and Friday for our final round of this chemo schedule. The MRI is January 10th... hopefully that will be our real christmas present and our christmas MIRACLE!
HAPPY HOLIDAYS...

ps I'll update tomorrow night after our special chritmas gift from Santa's Elves!

Friday, December 20, 2002 at 09:47 PM (CST)

We've just got home from Children's Mercy and another round of chemo. He got started real late yesterday due to some problems getting his urine levels okay. He started getting pretty sick today, but hopefully that will all be over with by morning. Brought him home, stuck him in bed and hopefully he's there for the night.

Tuesday, December 17, 2002 at 07:22 PM (CST)

Spencer has been feeling really good the past couple of days. He played outside in the afternoon Saturday and Sunday, has been at mom's the past two days and helping her make christmas cookies. He got over the worst of the nausia during Friday night. He'll be at mom's again tomorrow and then back to the hospital Thursday and Friday. We'll hope this round goes as well as the last. We're about ready for christmas around here... or as ready as we're going to be! I am working this week...finals! I'll go to the hospital on Thursday afternoon after school is out. The kids have to go on Friday and then they are out until Jan. 6th! Happy holidays to all!!!

Friday, December 13, 2002 at 06:01 PM (CST)

Another round of chemo complete, got home about 5:00. Spencer has been very nausious today, hasn't been able to keep his seizure meds down or anything else, but he seems much better now that we're home. Hopefully that good feeling will continue.

Saturday, December 07, 2002 at 06:49 PM (CST)

WE'VE FINALLY TAKEN TIME TO UPDATE THE PHOTOS!!!! Spencer has been feeling pretty good today, but seeming more tired. He slept for almost 3 hours today... that's why I could get new pictures in (should have been cleaning house, but oh well... this is much more fun!) I'm guessing our counts may be dropping even lower than they were on Thursday. Vomiting/Nausia seems to be minimal, not eating a lot, but that is to be expected.

Friday, December 06, 2002 at 06:28 PM (CST)

We're home, Spencer is feeling pretty good, of course, we really don't expect him to start having too many effects until after the next round, next Thursday. He is going like the energizer bunny!!! Added another medicine to his daily schedule, but so far so good! Glad to see his daddy. We're now scheduled to complete this chemo each week, ending on Dec. 27th, followed by an MRI around Jan 10. Thanks for the prayers.

Wednesday, December 04, 2002 at 10:59 PM (CST)

Tomorrow we're headed back to the hospital for another round of chemo. Spencer is going to change his chemo routine to include cisplatin & irontecan every week for four weeks. We will have to stay several days this first round, but by next week we should be able to admit on Thursday afternoon and come home on Friday afternoon. That part will be nice, we'll just have to see how he handles the side effects. After four weeks of this routine, we'll do an MRI to check to see if we are making any progress and then decide what we'll do next? More chemo of this type? or stem cell? or something else? Never know what each phone call or visit will turn into. He's feeling good, maybe even too good!! Perhaps, he's just feeling good enough to act like a normal 3 year old (and drive his mother over the edge, which doesn't take much these days!!!!) I'll update with chemo progress! Thanks for the prayers!

Monday, December 02, 2002 at 05:11 PM (CST)

We're home from clinic today and Spencer continues to feel good. His counts are somewhat mysterious. His white count is still amazingly high 47.1 (normal is 10 - 15.5); his red count is a bit low but far from transfusion; his plateletts have dropped 100 points from last Tuesday, but still 100 points above transfusion levels. Dr. Emami has decided that since it has been 14 days since chemo, we will just move right on to chemo again the end of this week... Thursday to be exact. We'll get cisplatin and irontecan this time. Always changes....can't ever predict or make plans while fighting this da&@ thing!!! Did have a good Thanksgiving weekend though... must be thankful for that!

Thursday, November 28, 2002 at 08:08 AM (CST)

HAPPY THANKSGIVING TO ALL...

Spencer is feeling good so we're off to Rob's sister's for lunch and then my mom's for supper. His counts were good on Tuesday, so hopefully the crash will hold for another day or two.

Thanks to all that continue to follow our path, send prayers, sign the guestbook and stand by our sides through each step of the way. The past 15 months have certainly proven to us that we must learn to be thankful for the little things in life!!!

Happy Thanksgiving to All...
Rob, Julie & Spencer

Tuesday, November 26, 2002 at 03:57 PM (CST)

We've returned from clinic today. Spencer's counts are doing okay. His red counts are a little low, plateletts are still in the normal range and white counts is extremely high... due to GCSF shots nightly. They decided to change GCSF to every other night to let them come down some. At least, we don't really have to worry about being overly suseptible to picking something up over Thanksgiving. His counts are higher than they were when we did the stem cell harvest! He is still being the energizer bunny throwing in a few real fits every now and then! Neurotin is just wonderful..???!!!??? NO more seizures!!! Feeling pretty darn good for one week post chemo. Scheduled again for December 9th... we'll be getting Cisplatin & Irontecan!!!! Dr. Emami got clearance for it this week. So far so good... Happy Thanksgiving to all...

Thursday, November 21, 2002 at 08:40 PM (CST)

We're home and Spencer is feeling very good. His kidney's are functioning normally, his nausia/vomiting is for the most part being held under control with very regular doses of nausia medicine. Now we are working with the anti seizure meds... he is currently not having seizures, but the meds are making him feel very very tired, putting him that "fighting to not sleep" mode! He is certainly glad to see his daddy!!!

Tuesday, November 19, 2002 at 11:33 AM (CST)

We finally saw neurologist this morning, Spencer seemed to do well playing her games and responding well, other than following light with his lazy right eye. Her recommendations are that we leave him on an antiseizure med until we see if we can shrink the tumor, then work on taking him off. She is recommending a different one that what he is currently taking, one that doesn't have any known drug interaction problems, therefore I am in hopes that we will be able to proceed with the Cisplatin and Irontecan as planned. Dr. Emami is in conference at this time, so I haven't heard from him yet. We are scheduled for an EEG at 2:00 this afternoon, hopefully, we'll be beginning chemo after that is over.

Keep the prayers coming...

The good news... I haven't yelled at anyone... YET!

Monday, November 18, 2002 at 04:25 PM (CST)

Well it is 4:25 on Monday and nothing is happening with Spencer. For a recap of our weekend... Saturday morning about 8:30 Spencer had a seizure, loses speech for about 30 seconds - one minute then regains ability, sleeps and is fine. He had another one about 11:45 which resulted in us coming to Children's Mercy ER... what an experience. We arrived at 1:30, sat until 6:45, had 4 more seizures and were finally admitted with antiseizure meds. Sunday...wait, wait, wait. Monday, did hearing test this morning and are now waiting on neurology to assess him. We can't begin chemo without that because one of the drugs we were going to try may not be compatible with antiseizure meds. They were to come this morning, but we haven't seen them yet. My plan, we either get chemo started tomorrow or Spencer and I will go home and return when they all get their acts together and decide what we are going to do. Overall he is feeling fine. He is eating good, drinking good, and playing good. He has no new neurological signs. Hopefully tomorrow will bring more news and we can get on with this treatment process!!!

Tuesday, November 12, 2002 at 05:49 PM (CST)

I hate to report bad news, but the remaining MRI was not the greatest of news, however, it could have been worse. Spencer has new tumor activity. The spot in September that they were arguing over has grown as well as another new very small spot showing up. Both of these spots are very very small, not large enough to measure, but larger than the MRI in September. We are post-poning stem cell at this time. We will admit on Monday to begin another round of chemo using different drugs to attempt to shrink these spots before moving on the stem cell. Spencer is still feeling very good, no real reason not too... I can't say that I was surprised, but certainly not happy. But, we have a plan... I can deal with it! Hearing test and creatin clearance test coming up and then chemo next week. Keep the prayers coming for successful treatments!!!

Monday, November 11, 2002 at 04:58 PM (CST)

Good news is that Spencer's spine MRI is clean. The brain MRI is still in question. My nurse told me that it has not been dictated yet, not necessarily bad news, just news that it isn't totally clean and they need to compare to previous scans to document change... perhaps no change at all, but that hasn't been confirmed yet. We should get these results tomorrow when we get there. We are to admit at 11:00 tomorrow morning to same day surgery to get the hickman replaced and get a foley catheter put in for the urine collection. We'll go back on Wednesday to get the foley out, get his heart checked out and his hearing checked. Still scheduled to admit on Monday for stem cell, unless MRI changes that. PRAYERS FOR A "NO CHANGE" MRI!!
Julie

Friday, November 08, 2002 at 06:22 PM (CST)

The MRI is over, we've made it home, but no results yet! We will probably not have them until Monday... what a weekend! Spencer had full antisetic this time, not just sedation, he handles that much better, so he came home and we had to stop and get icecream. He is hungry!!!!

Wednesday, November 06, 2002 at 01:42 PM (CST)

We've made it home, Spencer finally went 24 hours without a fever, his counts are much higher (white count is now really high, thanks to the GCSF shots he gets at bedtime). At least we have a little immune system now. We are still scheduled to return on Friday for his MRI and they have moved the hickman replacement to Tuesday of next week. Thanks for the prayers, he's looking pretty good.
Julie

Sunday, November 03, 2002 at 06:39 PM (CST)

We're on our way... Spencer spiked to 102... the magic number... at least it isn't midnight. Mom is going down with me tonight, hopefully we'll be home in 24 -48 hours. Keep the prayers coming...
Julie

Sunday, November 03, 2002 at 08:10 AM (CST)

Despite an up and down day yesterday, we are still at home. At 8:00 last night, I would have bet money we would be at the hospital by now, but his fever went back down. He hovered yesterday between 99.3 and 100.5; must get to 101.5 before we admit. He finally started having wet diapers again in the evening, went most of the day basically dry. He is still complaining of a lot of pain when he tries to go to the bathroom. He did finally accomplish a small bowl movement this morning, complete with blood shrilling screams, but the first in two days even with laxatives. I think he is so upset with the pain that he doesn't even want to try... More codiene...but I'm beginning to wonder if it is really helping, but I don't want to have to go inpatient for morphiene. At least his pain seems to be limited now to when he tries to go to the bathroom, earlier in the week he had pain just trying to lay down and stand up and didn't want to even be picked up. Fever is 100.4 this morning... we'll see how today goes, we're scheduled to go to clinic in the morning to see if he needs blood or platelets.

Thursday, October 31, 2002 at 06:23 PM (CST)

Happy Halloween! We spent the entire day at clinic today. We arrived at 9:15am and just returned home. Spencer's counts are very low, we got blood, platelets, a GCSF shot and their taking bets on wether we will make it through the weekend without going in with fever. We had a little seizure type activity this morning, very slurred speech, very lethargic for about 1 minute, then to sleep, then okay. Discussed all of this with the doctors, but after seeing his counts, they told me it is not an uncommon reaction with his counts being so low. He is feeling much better now that he has got some blood (and color). We'll see what tomorrow brings, I'm planning on going to work, mom will keep Spencer. We go back Monday to see where his counts are and if he'll need more blood/platelets. This chemo is certainly more intense, but so far so good. Next weeks schedule is looking like: Clinic Monday; MRI & ultrasound of veins Friday; Hickman replacement the following Monday. At least the hickman did work pretty good today. We must be thankful for some things. Trick or treating was done at the hospital... tonight, we're staying home, a little to risky to be out and about.

Julie

Monday, October 28, 2002 at 04:09 PM (CST)

Well we made it to clinic today and after atleast a 30 minute, maybe even 45 minute battle with his hickman, finally got enough blood to send for labs. Took a while for labs to come back, but they finally did. We are lucky, no need for transfusions yet, report back on Thursday. His red, white and platelets are low, but not "that low". ANC is still 744, below 500 is considered to be neutropenic. By Thursday I'm sure we'll be there... trick or treating at the hem/onc clinic... what a fun time. He has developed several mouth sores, especially his lips being quite swollen, red and bleeding from time to time. They finally gave him some pain meds because he got so upset during the hickman process that he really bit his lip and got even more upset. They have urged me that if he decides he won't drink or has continual pain that we should call and come in to go inpatient for fluids and pain meds... mouth sores can get quite severe. So good for now... we go back Thursday.

Friday, October 25, 2002 at 04:10 PM (CDT)

WE made it home about 7:00 last night. Spencer decided to eat a little supper with his dad... and kept it down. He had a pretty good night. This morning he couldn't eat his breakfast, but by lunch time was hungry. So far so good... we go Monday for labs and to see if he needs blood/platelets.

Thanks

Wednesday, October 23, 2002 at 12:38 PM (CDT)

It's Wednesday... certainly hump day for us! We finished with Cytoxan at 8:30 last night, finish with Mesna at 1:00 today and hang the last bag of Topotecan, 24 more hours and we're finished. Spencer's counts have already started down... his white count and red count is already low, platelets aren't far away... my guess is we'll be back in clinic Monday afternoon to check things and see if we need blood or platelets. Haven't heard for certain yet. Let's just say, I'll keep the suitcase packed because if we make it through next week without a fever, another miracle will have happened! KEEP PRAYING... MIRACLES DOOOOO HAPPEN! So long as Spencer doesn't try to eat or drink than he doesn't vomit, but as soon as something goes in, it comes out. Hopefully that is going to begin to improve now that we're done with the Cytoxan. His kidneys are working fine though, so that is one plus. He has been out riding his car and tractor in the hallways and actually acting really pretty good. Rob came last night and Spencer wants him to come back tonight... we'll see if that works out or not. We should get home sometime tomorrow evening, unless they decide to keep us for blood/platelets, etc. Thanks for the prayers.

JULIE

Tuesday, October 22, 2002 at 02:10 PM (CDT)

Day 2 of chemo... we'll actually day 2 doesn't start for about another 20 minutes, but day 1 is over. Spencer began being sick last night about bedtime. Today he has played some, tried to eat, has drank a little. Now, he is sleeping! His kidneys tried to their "not working" thing again in the night last night, his eyes are quite puffy from all of the fluids he is getting. He got some sodium last night and some lasix, so his eyes are looking better this afternoon. Hopefully the kidney thing will not reoccur tonight... The hickman... well it still isn't working real great, takes 20-30 minutes to find the right position to get it to work for labs so they are still considering trying to replace it Thursday afternoon after we are done with chemo or possibly Friday morning. Not sure yet...

Until later.

Friday, October 18, 2002 at 09:57 PM (CDT)

What a day... we spent the entire day at the hospital... our plans changed from 8:30 am to 1:30 pm because I won't agree to Versed and Nebutol for sedation, I want propophol! We went to clinic, they sent us on to radiation to have his line looked at... we looked and looked and decided the best was to try to extend the line further into the artery as it was pressing against the side of the artery. Sooooo... we were to wait until 4:00 when we had anistesiology lined up... Spencer was a screaming idiot wanting something to eat or drink for over an hour then we finally got back to surgery... the anistesiologist came in, checked his line for heprin and low and behold... GOT BLOOD... the first blood return in over a week with more than 10 people trying. We messed with it for a while and finally narrowed it down that as long as he is lying on his right side with his hand above his head... it works... so we are to admit Monday morning at 8:00 to begin chemo.

WHAT A DAY, but we're home!!!!

Thursday, October 17, 2002 at 01:21 PM (CDT)

Spencer has had a wonderful week... he has been playing real hard, not taking naps and still staying up until late into the evening. He tells me he can't go to bed because he still has a lot of soybeans to combine... guess what dad is doing? He is at daycare today as mom and Kenny have taken a little vacation. We are to be at Children's Mercy in the morning at 8:30 to have his hickman line replaced (again). At least it is early in the morning so we won't have the long wait without being able to eat/drink. We are scheduled to begin chemo on Monday of next week. A special thanks to the staff at my school for the fiber optic pumpkin that they sent Spencer for Halloween... he is loving it!

Julie

Sunday, October 13, 2002 at 08:52 AM (CDT)

Plans change again... Children's Mercy called me late on Friday afternoon and decided to give Spencer a week of rest before we start chemo again... (I'm not sure who needs it most, Spencer or myself!) We will begin chemo on 10/21, this will get him off his antibiotics and give another week for the lab to identify the bacteria that did grow before we begin again. I am still working with the hickman, if I can get a blood draw than we're going to leave it, if I can't, I call by Tuesday and we may have to go down and have it replaced this week. Only time will tell if it is truly positional or if it is defective. Had a great evening with friends last night, almost a "normal" life again!!!! It was great, if only for an evening! Of course, we still had the IV pump and the meds, but atleast we were out of the hospital and he was able to have a great evening playing and being a kid!!! It's amazing how much one can appreciate one little evening with friends... talking about all of the issues with their kids, 4-H, hectic ball schedules, homework issues, a very welcome change (after we discussed what's going on with Spencer)!! I'm actually looking forward to going to work tomorrow, will give me a little more chance to get some things ready to be gone for a week again! THANKS FOR THE CONTINUED SUPPORT!!

Thursday, October 10, 2002 at 10:31 PM (CDT)

Luck has it... we made it home, not until about 8:00PM, but we're home. The stem cell harvest went real good... they wanted about 500,000 cells minimum for the transplants and they got about 120 million today. He did real well during the harvest, only pucked once! We waited until 5:00 for results, because they expected them to be so high, then went to radiology to get the med-comp port removed from his neck. They tried to draw blood from the new hickman that we had put in yesterday, and it still would not draw so... after removing the med-comp we went to xray where they looked at his hickman placement and ran a dye test... fluids go in, but little to nothing will come out... we head back Monday to go through surgery again to replace the "defective" hickman... ONLY WE COULD GET A DEFECTIVE HICKMAN... Spencer was so excited to be home and to see his daddy, he hasn't left his side since we got home, I've not got the two of them in bed and am headed there myself, have to get up at 1:00 AM to give Spencer his next dose of IV Antibiotics... we're going to spend the weekend at home, then return to the hospital next week for chemo, again. Hopefully round #2 will be much less eventful than this first round has been! Thanks for the continued support and prayers.

Thursday, October 10, 2002 at 11:16 AM (CDT)

Well it is Thursday morning, we haven't been home yet, but Dr. Gilman and MaryHelen have promised me that come he** or high water, we're going home today. He is currently about an hour into the stem cell harvest, all is going well. We should complete the harvest about 2:00, wait for blood work, do a TPA treatment on his new hickman (another story) and then go home.

Surgery yesterday became a long, drawn out procedure. We started the day out just waiting for our turn to do a 45 min procedure to place the med-comp in his neck... well, after Spencer not being able to eat/drink all day, we finally went to surgery at 1:40, upon arriving at radiation, I found out we were also going to remove his "infant hickman" (don't know why they ever put that one in anyway) and put in a larger one as well as the med-comp. Our 45 min procedure became a 2 hour procedure, general antisetic, breathing tube, croop, breathing treatments and ultimately us spending the night because his breathing wasn't so great. It is much improved today.
Last night the hickman wouldn't let us draw blood, so today we're going to try a TPA to see if there is a blood clot... always something. This week has certainly been 1 step forward, 2 steps back, but hopefully it's improving.

Later...
Julie

Wednesday, October 09, 2002 at 09:36 AM (CDT)

Sorry for no updates for a few days, the library was closed Monday & Tuesday so I couldn't update. We'll in a nut shell there is no rest for the weary.... Spencer made an amazing recovery with his counts, the transplant team say they have never had anyone jump like he has... his ANC (immunity levels) was 0 on Sunday, 153 on Monday, 1785 on Tuesday and this morning they are over 12000. We are currently waiting on radiology to call us that they are ready for him to place his Med-Comp Port in his neck (it is scheduled for 1:00 today, but could be earlier if they have any cancellations). We will go home YYYEEEAAAHHHH!!! after we get the port placed only to return by 7:30 in the morning to begin the harvest. That is to take 4-6 hours, then we go home again, come back Friday morning, harvest again if necessary and get the port taken out. We'll have the weekend at home, returning Monday morning to start chemo again.... geeeee this is FUNNNNN!!! He is feeling much better, they still haven't totally identified his bacteria infection, other than gram negative anarobic, so we're going home with two different antibiotics for the next ten days. I think he'll live the rest of his life on antibiotics! In total he received 2 bags of platelets and 1 bag of blood during this infection and hasn't had a fever since 7:00pm Monday night... I'll update again when I have a chance... thanks for all who have called and prayed for us, I do believe that this jump in counts is an answer to our prayers!!!

THANKS
JULIE

Saturday, October 05, 2002 at 02:40 PM (CDT)

Spencer went inpatient on Thursday evening after our clinic visit. His white counts/ANC were both 0 at clinic, he need platelets, then spiked a fever which put us inpatient. He slept all day yesterday, rallied at 4:30 this morning and wanted to play. He got a unit of blood yesteray as well. Early this morning, his blood cultures from his central line both showed infection, so more antibiotics. Today, he began passing blood in his stools, so were waiting on those cultures. For now, he is eating good, no new fevers and he is playing much better today. At the earliest, we could come home on Monday afternoon, if today's blood cultures don't show any more infection. I'm guessing it will be later in the week. Dr. Gilman still thinks that Wednesday is a possibility for stem cell harvest, once this infection is out of his system, his counts should shoot up!! If harvest goes as planned, we will start our next round of chemo on Oct 14... no rest for the weary!!! I'll update again when I have more lab results...

KEEP PRAYING>>>
JULIE

Wednesday, October 02, 2002 at 05:57 PM (CDT)

As it turned out, Saturday was a good day, maybe even a great day. Sunday, Spencer didn't feel so great, just laid around most of the day, threw up a few times. Monday... more puking, he really didn't feel like lifting his head off his pillow much at all... nothing to eat!!! Tuesday, he seemed a little better, even ate a few bites. Today, again a little eating, felt better because Spencer's dad had my mom bring him home early so they could play. He is eating better. We go for counts tomorrow! I'll know more after the clinic visit. Thanks for the prayers...
Julie

Saturday, September 28, 2002 at 11:21 AM (CDT)

WEll, I think we're finally over the vomiting part, Spencer is drinking fairly well, but still doesn't want any part of eating. So far, all he has had since Monday is a slice of cheese. He slept in this morning, would wake and want choc. milk and then go back to sleep, he kept covering his head with his blanket and finally told me his eyes hurt, I really think he has a headache, a side effect from the GCSF shots that we began last night. I gave him some Tylenol and he went back to sleep. About 10:00 he woke and wanted his daddy, got off the couch and seemed to feel better than he has since we got home. His dad came by about 10:30 and he wanted to go ride in the combine, so off he went, I must take lunch soon and retrieve him from the combine, but at least he though he wanted to do something today. Another day....

Thursday, September 26, 2002 at 06:51 PM (CDT)

We'll we're home, not setting the world on fire, but at least we'll be sleeping in our own bed tonight... that is good for Spencer, however, I think I sleep better at the hospital. His vomiting ended last night, but he is still having a lot of nausia, he doesn't want to eat anything. He did drink some milk before we left the hospital, but by the time we made the trip home, he's pretty well wiped out again and telling me his tummy hurts. His dad will be home soon, I'm sure that will make him feel better. We are currently scheduled to go for clinic next Thursday afternoon to get labs, etc. then go in for the Stem Cell Harvest in two weeks. Thanks for the prayers!

Wednesday, September 25, 2002 at 04:32 PM (CDT)

Well another day, Spencer started vomiting about 6:45 last night and has continued on and off through the night and through most of this morning. We have now made it, "puke free" since about 11:00 this morning. He doesn't have much get up and go but was sure glad to see his daddy. We met with the transplant staff today to learn more about Spencer's upcoming stem cell harvest/transplant. We will do our first harvest in 2-3 weeks then the outcome of the harvest will determine our time schedule. We are looking at doing the transplant as a two step procedure 4-6 weeks apart, being inpatient 2-3 weeks each time. Hopefully, we'll get released to go home tomorrow evening, if not, we should get home Friday morning. Thanks for all the calls. My email isn't always working here from the hospital, so I appologize to those that haven't got an email from me this week.

Tuesday, September 24, 2002 at 03:28 PM (CDT)

Finally got Spencer down for his Benadryl nap and the start of today's cytoxan. He's had a pretty good day, plays really hard for a little while, then gets his blankie and binki and coasts for a little while. He isn't eating or drinking much of anything today. He did have some blood show up in his urine about 2:00 today, a side effect of the cytoxan, so we'll be watching that very closely today. This is his last dose of cytoxan, but it takes 6 hours to give it to him. He's still getting the topotecan and will continue unitl 3:00 Thursday. It took a while to get him down last night, he kept asking for his daddy. Hopefully daddy will get to come tomorrow for a while, we are meeting with the transplant team at 1:30 tomorrow to learn all we can about what is ahead of us with the stem cell transplant.
Until tomorrow...

Monday, September 23, 2002 at 02:37 PM (CDT)

Spencer's MRI report looked good. There is some enhancement, but nothing growing so assumed to be scar tissue at this point. We are just getting ready to start his chemo for today. He's going to get Cytoxan over 6 hours today and tomorrow. We will also begin Topotecan which he will receive continuously for the next 72 hours. We're settled in and he is farming. He went to craft time at 1:30 and made pictures. We should finish chemo on Thursday afternoon. We're in room 4612.

Sunday, September 22, 2002 at 09:11 AM (CDT)

Spencer has had a pretty good week and is looking forward to riding in the combine this afternoon. We went for the MRI on Thursday afternoon, he had a battle with the sedation and we're still waiting MRI results. I'm guessing I'll get those when we arrive at the hospital in the morning. We are to be at clinic at 9:00 in the morning to do blood work and get us ready to go to the Hem/Onc floor. Spencer will need about 12 hours of fluids before chemo begins, so chemo won't actually begin until late Monday night or Tuesday morning. He will actually receive 3 days of chemo and 2 days of just fluids. If all goes well, we should be home either late Thursday night or Friday morning. We are receiving one drug that he had the very first time last year (Cytoxan) the other drug (Topotecan) is a new one for us and a relatively new one for treating Brain Tumors. All we can do is try. I'll update with MRI results once we have them. Keep the prayers coming.

Wednesday, September 18, 2002 at 06:04 AM (CDT)

Spencer has been feeling pretty good, other than a little spell on Monday evening/Tuesday morning. This little spell prompted me to contact Dr. Emami, we have an MRI scheduled tomorrow afternoon. We would have done one with the first round of chemo, but Dr. Emami got us scheduled a few days earlier to check things out, (this little spell was similar to the one he had in July.) We're hoping and praying that he was just overly tired because of a busy weekend, but we'll know soon. After a long nap on Tuesday morning, he woke appearing to feel fine and wanting to eat. Chemo is scheduled to start Monday, Sept. 23rd and last all week. I'll update when I have results of the MRI.

THANKS>>>
Julie

SUCCESS IS GETTING UP ONE MORE TIME THAN YOU FALL DOWN!

Friday, September 13, 2002 at 05:45 AM (CDT)

TGIF... This has been a very busy, but "normal" week at our house. Rob has been able to start harvesting corn... a pretty grim task this year, but it has to be done. I have returned, and survived, two weeks of school. Spencer spent Monday and Tuesday mornings at daycare, enjoying the kids a great deal, but really wearing him out. On Wednesday, he traveled to the Omaha Zoo with my mom and step-dad and his cousin, Alex. They had quite a day, he just didn't want to go to bed when he got home because he had so much to tell us. Thursday morning, he kind of crashed from his big trip on Wednesday, but after a very long nap, he woke in a much better mood. He's going back to Grandma's today and then we'll try daycare again next week. I'm still waiting for the final confirmation date of starting chemo... looks like Monday Sept 23... that means, I've got a lot of school work to get done!!!! Here's to the good days we're having!!!!!!

QUOTE OF THE DAY: SUCCESS IF GETTING UP ONE MORE TIME THAN YOU FALL DOWN!

Thursday, September 05, 2002 at 05:34 PM (CDT)

We've returned from the Neurosurgeon and Spencer' staples are removed... we have them in a little bottle for his baby book! He did a great job being brave while they removed those from his head. We then went to see Dr. Emami, the oncologist, looks like we're going to start chemo about September 24. Spencer continues to feel wonderful!!! I am trying to get back into the routine of school... the kids have been great. Mom has kept Spencer this week and we're going to start working him back into daycare next week. Lord knows I have a lot to get done at school to be ready to be gone for a week again... but we'll make it!!!! Thanks for the cards, calls & prayers....

Saturday, August 31, 2002 at 07:15 AM (CDT)

Spencer continues to feel great and mom is slowly recovering. One thing for certain... Spencer bounces back much quicker than mom! If it weren't for the staples in his head, one would never know he'd had anything done to him in the past two weeks, let alone two surgeries! It is wonderful to see him back to "normal"! Our next appointment is Thursday afternoon, to get the staples out of his head and to check in with the oncologist to see what our starting schedule is looking like for chemo. I'm headed back to work on Tuesday (my first day of school) and mom is going to keep Spencer. I'm going to try to send him to daycare for a couple of mornings this week so he can see the kids, but we still have to be careful with the staples and the skull fracture! Thanks for the cards, calls & visits.

Wednesday, August 28, 2002 at 08:44 AM (CDT)

It is so wonderful to be home... Spencer has improved even more since we got home late Monday afternoon. He played outside for a little while yesterday and is just doing great! He is eating good, taking a normal nap and sleeping good at night... even made it last night with no pain medicine. We are doing the decadron taper, so I expect him to be a little irritable towards the end of the week as we come off that, but it is just so nice to see him feeling good!!! Kids are amazing....

Monday, August 26, 2002 at 02:34 PM (CDT)

GOOD NEWS... We're going home...sometime this afternoon. They are currently trying to get all of our follow-up appointments scheduled, home-health arranged, and supplies ordered, but by bedtime tonight we'll be at home!!! Spencer handled his MRI great today... and NO RESIDUAL TUMOR!!!! CONFIMED BY MRI!!!!! Treatment will begin in 3-4 weeks, we think, and will consist of chemo, stemcell harvest, and stemcell transplant...lots to learn about that yet! Thanks for all the cards, calls and prayers...
ROB, JULIE & SPENCER

Friday, August 23, 2002 at 04:45 PM (CDT)

What a day... we left our hem/onc room at 10:45 this morning and Spencer just now entered PICU. His surgery today went fine. First, they placed a double luman hickman back in his chest, so he has his noodles back. Second, they went for the remaining tumor. Dr. Hornig didn't sound quite as confident today in telling us that he removed it all, but he did say he certainly removed everything he could see. I think he is a little more hesitant to say "all" after the Monday experience. This surgery did require going much deeper into his brain...closer to the speech center, however, Spencer is talking, he told recovery that he wanted coke, not sprite and told Barb "no". Another MRI will be done on Monday just to verify what is and what isn't, but Dr. Horning says no more surgery.... Rob & I will be staying in the Ronald McDonald rooms again tonight and then hopefully we'll be up to the Hem/Onc floor tomorrow. Thanks for the prayers.
Julie

Thursday, August 22, 2002 at 10:33 AM (CDT)

What a difference 24 hours makes. Dr Hornig and Barb came to see us yesterday afternoon with some not so good news. The Post-OP MRI showed some residual tumor in the fold of his brain that they couldn't see when they did surgery on Monday....sooooooo.... we're headed back to OR tomorrow. I don't know what time yet, in the morning. We are also trying to arrange with a general surgeon to put his hickman cath back in as well tomorrow so that we don't have to turn around and do that surgery in a few weeks. Spencer is feeling much better today, the swelling has gone down a lot and he is up and playing. Dr. Hornig feels that tomorrow's surgery is much less risky than the first and that he should have no problem removing the remaining tumor now that he knows where it is at. Keep the prayers coming... I'll update again when I know more.
Thanks

Wednesday, August 21, 2002 at 09:56 AM (CDT)

Finally a chance to update... Spencer's surgery went great. Dr. Hornig was able to remove all of the visible tumor. He says he can't promise that there isn't anything hiding, but atleast everything that is growing is now gone. Spencer was talking and moving shortly after surgery. Yesterday (Tues) we spent most of the day still in ICU then went for his Post-Op MRI, more sedation... we finally got to the Hem/Onc Floor room 4618 about 5:00 last night. Spencer was so much more relaxed once we were there. He has a lot of swelling around his face, hoping it will go down today. He is still spiking a fever about every 12 hours, Tylenol brings it down, but they just drew blood cultures to make sure everything is still okay otherwise. His vitals are remaining good, he is drinking but not eating. Hopefully today we will get him up and moving more and he'll get to feeling better. As for Rob & I, we're just relieved to be to this point. Rob has stayed with me to this point, but is going home today for a while and will be back tonight. Thanks for the prayers.

Monday, August 19, 2002 at 06:42 AM (CDT)

Today is surgery day (#2). Spencer had a pretty good night, his dad and I tried to sleep, but tossed and turned a lot. Spencer is still feeling pretty good, had some nausia and vomiting yesterday and has slept more, but nothing compared to pre-surgery the first time. Hopefully, he being stronger will make recovery even quicker. We admit today at 10:00, hopefully will be out of surgery between 2:00 and 3:00. I'll update again as soon as I have news! Prayers are greatly appreciated. Thanks so much for all of the encouraging words over the past weeks. The Lord never promised us roses without thorns, so this is just one of those thorns, our rose will bloom again soon!

Friday, August 16, 2002 at 05:37 PM (CDT)

We've just returned from meeting with the neurosurgeon. Spencer is scheduled for surgery at 10:00 Monday morning. We did all of the pre-op lab work and met with all of the people today, so we should be ready to get rolling with surgery. Surgery should last 3-4 hours, 1-2 in recovery than 24 hours in ICU, they finally to a room. I'll update as soon as I can after surgery. Keep the prayers coming...
Thanks

Friday, August 09, 2002 at 10:59 PM (CDT)

Our neurosurgeon called today, he wants to see Spencer in clinic next Friday to discuss the scans and surger with us and do pre-op labs. Currently we are looking at surgery on Monday morning, Aug. 19th. At least now we have a plan...
Keep the prayers coming, Spencer is still feeling great!

Thursday, August 08, 2002 at 03:23 PM (CDT)

I am devastated to report that Spencer's MRI shows a large tumor located in the same location as his first. We are waiting to hear from the neurosurgeon as to where we go next!

Wednesday, August 07, 2002 at 05:20 PM (CDT)

As luck would have it, the radiologist hadn't read Spencer's MRI yet, so it will be tomorrow before we have the results. Dr. Emami doesn't expect anything bad... we'll keep hoping and praying...

Until tomorrow...

Wednesday, August 07, 2002 at 06:22 AM (CDT)

It is Wed, Aug 7th, we're headed out to Children's Mercy for our 3 month MRI. Should have results later today. Mom is dreading this one big time! I'll post as soon as I can! All prayers are greatly appreciated.

Wednesday, July 24, 2002 at 07:11 AM (CDT)

It hs been over a months since I posted, sorry... life is just going pretty much normal. Spencer turned 3 last week, we celebrated on Friday at daycare, on Friday night at home with family and then on Saturday night we had our "Spencer Made it to 3 and is Treatment Free" party with friends. We have just spent a wonderful week on vacation... we spent most of our time driving through Iowa, a little time in Wisconsin and in Minnesota, but it was a nice week with just the three of us! Spencer is feeling really good. I am horribly dreading the MRI which is August 7th, as I keep telling myself that all of this has gone too smooth, we've been so fortunate, when am I going to get hit with a bomb!!! Hopefully NEVER!, but I can't let my guard down, I think it's just a "mom thing". Spencer is growing, not sure how much, we have a doctor's appointment next Monday to see about his feet, but he has certainly gained weight and has become taller. His language is non-stop. His favorite words are "why", "what" and "who" and "because I (don't)wan't to". He loves playing basketball, baseball and riding his trikes... a pretty normal 3 year old!!! God willing, he'll remain that way!

Monday, June 10, 2002 at 06:54 AM (CDT)

It has been a while since I've updated, I guess I'm slipping into "normal life" easier than I expected. Spencer went to Children's Mercy for his checkup on Friday, he has grown a full inch and gained a half pound since finishing chemo... a great start to growing! We go back in July for his next MRI and labs. We also went to the eye doctor this past week and his vision hasn't changed at all, also a good thing! We were concerned that he had rapid progressing nearsightedness in his right eye, but after one full year, no change. (This isn't related to the tumor, rather he had Prematurity Retinopothay as a baby and required laser surgery). He is playing harder and harder every day, loving summer! We do have to get an appointment with an orthapedic doctor, again not related to the tumor, but his very flat feet and walking in on his ankles has become more noticable as a result of the chemo, and going barefoot! Oh well, what would life be like if we had no doctor's appointments! WE ARE LOVING SUMMER AT OUR HOUSE! Thanks for all the prayers!

Thursday, May 16, 2002 at 06:32 PM (CDT)

Spencer and I spent the day at Children's Mercy, but we're home now and Spencer is without his "noodles" (hickman cath). We were late getting into surgery, but the hickman came out very easily and he doesn't appear to have had any problems with the sedation. We have labs again on June 7th. We're having a swimming party soon!!!

Monday, April 29, 2002 at 07:42 PM (CDT)

We're celebrating in Missouri! Spencer had his MRI this morning, all went well with the sedation and our nurse called us this afternoon with the results! Spencer's MRI looks great, other than the sinus infection that showed up big time on the MRI. We are very very happy with this news. We will meet with our oncologist next week to find out when our next MRI is, when we get the hickman cath out and what the plan is from here! At least we know we are done with chemo! YYYYYEEEEAAAAHHHHH!

THANKS FOR THE PRAYERS!!!!

Monday, April 29, 2002 at 06:45 AM (CDT)

Today is MRI Day! We will be leaving for the hospital soon. Hopefully, Spencer's cold is well enough to continue with his MRI. He only woke once in the night for a coughing spell, his dad snored all night, and I counted the snores! (imagine that!) Prayers are certainly appreciated today as we proceed to the next step of our journey (whatever that is going to be!) I'll post results as soon as I have them, perhaps this afternoon or in the morning! Thanks to all for the prayers and support!!

Tuesday, April 23, 2002 at 06:28 AM (CDT)

Good News, Dr. Gammis and Rachel got the MRI thing taken care of, our MRI is now scheduled for Monday, April 29!!! Now just one more week to wait. Hopefully his cold/allergies will be a little better by then, we are down to a clear runny nose and a cough! Keep praying that all is well!! Sue (my mentor teacher) needs prayers too as she is undergoing open heart surgery next Tuesday!

Sunday, April 21, 2002 at 06:02 PM (CDT)

What a deal... Children's Mercy Xray dept. called me Friday afternoon to inform me that due to Spencer being in the hospital last weekend for croup, they won't do his MRI for 6 weeks!!! I flipped! I've called oncology, but they were already gone on Friday, so I hope to hear something from them in the morning. I can't imagine that they will want to wait until the first of June to do the MRI, but we'll see. Spencer's counts are much better, his white and red are still a little low, but overall, his immune system is much stronger now! I'm sure I'll know more after I talk with oncology tomorrow, but until then, we are on pins and needles! I can not even imagine what shape I'll be in if I have to put this off until June!!!

Wednesday, April 17, 2002 at 06:32 AM (CDT)

It's Wednesday morning, we got home from the hospital yesterday afternoon, still with very low counts, but it has been determined that Spencer has a virus, so not a lot they can do for it. Grandma Winnie is staying with Spencer the rest of the week to keep him out of daycare and try to keep him from getting something else. School is giving MAP test this week, so I feel I really need to be there as much as possible. Eldon (Spencer's Grandpa) had his gallbladder removed yesterday at 1:00, went into ICU about 7:00 last night and returned to surgery at 3:30 this morning for internal bleeding. Rob is at the hospital with his sister. Life is never dull, just a circus with many rings!

Monday, April 15, 2002 at 02:09 PM (CDT)

What a weekend! Saturday morning at 2:00AM, Spencer woke with horrible croup. After a steambath, vapor rub, and dimetapp, I decided to call Children's Mercy since I new his counts were bad. We ended up going to ER in St. Joe, they monitored his oxygen for about an hour and sent us home. On Saturday night, about 11:30, Spencer woke up with a fever. It was 102.6 when we left home headed to Children's Mercy. As of today, his fever has broke, but we're quarentined due to his cough and not knowing exactly what has caused his croup, probably a virus of some sort. We're hoping we get to go home tomorrow sometime, but it depends on his counts (they're still really low) and his cultures. Keep praying, we'll have this behind us soon!!! For now, I'm going to sit in the sun, try to improve my mood just a little, nothing like a good old sunburn!!!

Thanks

Saturday, April 13, 2002 at 07:07 PM (CDT)

Well, Spencer's counts are still very low and he has croup. We went to ER in St. Joe about 3:00 AM this morning. Of course, by the time we got to the hospital, Spencer was breathing easier, we had done a steam bath, vapor cream, and dimetapp at 2:00. They monitored him for about an hour and sent us home. We'll see how tonight goes. I'm amazed that he hasn't spiked a fever, but I'm also knocking on wood! Hopefully, we are at the bottom of the count thing and will be headed upward really soon!!!!

Thursday, April 11, 2002 at 08:50 PM (CDT)

Spencer's counts on Monday night were quite low, not much better today. Hopefully we are at the bottom and will be turning around soon!! MRI only 12 days away and counting!!

Monday, April 08, 2002 at 06:34 AM (CDT)

Hi all, I've gotten a little behind in my post, but Spencer seems to be feeling fine. My mom spent last week with him, but this morning he'll be going back to daycare. He's talked about the kids a lot all weekend, so I think he's missing them! We do labs again this evening, hopefully his counts aren't too low. If we can get through this week, our threat of low counts should be over with. Anxiety is mounting as we get closer to April 23rd, but I don't really think I'll be able to accept treatments being over until we get the lines out, which sould be around the first of May. Keep praying for us...
Thanks for everything!!!

Friday, March 29, 2002 at 08:11 PM (CST)

WE MADE IT! Spencer finished his chemo this morning and we made it home by mid afternoon. He is feeling pretty good, was ready to see his cows and his daddy! He had some nausia on Wednesday and Thursday, but that seems better now. It is amazing how quickly the six months of treatments have passed. Now, spring is here and we're ready for some nice weather! MRI is scheduled for early morning April 23.

Tuesday, March 26, 2002 at 01:13 PM (CST)

Spencer's counts were amazingly high on Monday, so once we waited for a patient to be discharged and a room cleaned, we finally made it to the floor and have begun chemo. He is feeling pretty good, just run down from his cold. It's hard to believe we're beginning the LAST ROUND!!!

Friday, March 22, 2002 at 12:07 AM (CST)

Well another week, Spencer is feeling good, I've fought a cold all week, but it looks like Spencer is able to resist. We have labs Friday afternoon to see where he is at, if he is close to being ready for his LAST ROUND starting Monday. We do want to ask for prayers for Scott Connor and his family. Scott is a classmate of Spencer's dad and his 21 month old daughter has been diagnosed with a Brain Tumor this week. They are planning surgery early next week. This makes three families, including ourselves, from Rob's graduating class to deal with this life altering situation. Our hearts and prayers go out to them as they begin the travels on this Brain Tumor road. Spencer and I will be headed to Children's Mercy Monday, my mom will be in sometime late Monday and will be spending a couple of weeks with us again! I'm sure Spencer will love having Grandma here to read books and do all of the things that mom doesn't always let him do.

Monday, March 18, 2002 at 06:24 AM (CST)

We made it through the weekend, feeling great! The weather was very nice, so Spencer go to be outside playing. I'm certain his counts are better, we will check them tomorrow. He also goes for his Early Childhood Screening with the school district tomorrow afternoon. It will be ineresting to see how they rate him compared to the evals we've had at the hospital. He's headed back to daycare this morning and is looking forward to playing with the kids! Thanks for all the prayers that got us through this weekend!!!

Friday, March 15, 2002 at 05:43 PM (CST)

Spencer went to clinic this morning to find his counts very very low, won't be going far this weekend, and as luck would have it, two little girls at daycare went home yesterday with strep throat, we're keeping our fingers crossed for a "stay-at-home" weekend. The good news, Spencer has not had any significant hearing loss during his carboplatin. His hearing was almost exactly the same today as it was in October when we started chemo. Of course, there is some room for error as getting a 2 1/2 year old to participate in listening games is a challenge. His speech is also catching up quickly! We'll do labs again late next week to see if we're anywhere close to being able to start our LAST ROUND OF CHEMO on March 25!

Saturday, March 09, 2002 at 07:53 AM (CST)

Spencer has had a great week! His counts haven't hit bottom yet, but he has certainly enjoyed playing this week. My mom left yesterday and will return for our next round of chemo. Spencer went to day care for part of one day and played so hard, he didn't even wiggle during his 4 hour nap when he got home. Hopefully, the long naps helped him stay feeling so good! Dad's farm sale was Friday, Spencer had a good time at that! Back to daycare on Monday, we have clinic visit on Friday! Hopefully, we won't have to go to the hospital before then!

Sunday, March 03, 2002 at 05:58 PM (CST)

Spencer has had a pretty good weekend. He has felt good and has kept nausia to a minimum. We had company last night, Ryan & Alex, so they boys' played really hard. Spencer seemed to enjoy having Alex come play. We are keeping him home from daycare this next week since my mom is here to stay with him, hoping that will keep us out of the hospital, atleast until next week!! One more round in April and we're done!!! (we hope and pray!)

Friday, March 01, 2002 at 10:03 AM (CST)

Spencer is doing better this morning. He had his Vincristine about 8:00, and so far, no problems. We are scheduled for Zofran (antinausia) directly and then should be going home, before the snow storm hits KC again. Actually, I think the snow will be worse up home than here, just what we need with lots of new calves on the ground, but we'll do what we can. Spencer had a little vomiting this morning, but nothing major, is out riding in his car now! One more round to go!!!! It's actually gone pretty quick, but I kind of dread the end, the not knowing what comes next!!!!

Thursday, February 28, 2002 at 11:06 AM (CST)

Well our luck has changed, Spencer took his chemo this morning, no problems, blood pressure stayed okay. After he got up, he wanted to play and we did, then he got the hickups, they he started getting sick. Hopefully it is short lived. The end of chemo is in the morning and they hopefully we'll get home before the snow storm hits!

Wednesday, February 27, 2002 at 02:16 PM (CST)

Spencer has completed day three of chemo and is still feeling pretty good. His blood pressure got really low during chemo, but bounced right back up as soon as he was awake and moving around. He is at a tea party in the play room right now and seems to be feeling good.

Monday, February 25, 2002 at 04:14 PM (CST)

Spencer had good counts this morning so we're admitted and have had our first day of chemo. So far he is feeling good. He had a great time this past weekend at the Farm Show and playing outside in the warm weather. So much for the warm weather, it is to be a low of 8 tomorrow. Oh well, by the time we go home Friday, it will be warmer. Spencer is having fun with Grandma, and it is nice to have someone else here with us. Dad will be sticking pretty close to home this week with the cold weather and lots of baby calves coming.
More chemo tomorrow...

Saturday February 23, 2002 6:02 AM CST

We have a big day planned. Spencer has been feeling much better. We are picking my mom up at the airport this morning and then going to the Farm Show in Kansas City. Spencer will love the tractors and equipment and it will be real nice just to get to be out and do something "normal" not related to doctors and hospital visits!! Monday, we return to Children's Mercy for the week for round 5 of 6 of chemo. Nearing the end, seeing a light,hoping and praying it isn't a candle that burns out when we get there!!!

Wednesday February 20, 2002 11:13 PM CST

Spencer has had two good days at the sitters. His nose has finally slowed down and he seems to be feeling pretty good. Hopefully his counts will be high enough to start chemo Monday. It's kind of nice to be back to somewhat "normal" around here!

Tuesday February 19, 2002 6:39 AM CST

Spencer had a good weekend, after our trip to get labs on Friday with his fever. He has not run any fever now since Sat. morning. He is off to daycare today and me back to work. His ANC is 1044, it has to be 2000 to start chemo on Monday. We'll hope for a speedy bounce back!!!

Saturday February 16, 2002 5:13 AM CST

Spencer spiked another fever yesterday about noon. We went to the hopsital to check his counts, ears and throat. His counts were better, (not neutropenic anyway), his ears and throat looked okay so we came back home. As long as I can keep the fever down with Tylenol, we will be at home. He is also cutting his molars and still has his cold, so it's anyones guess as to what is cauing this fever, it just hovers at 101.7 when it is up, as soon as I give Tylenol, it's gone for about 8 hours.
Oh well, maybe we'll still make it for chemo on the 25th, we'll see what counts are again on Monday.

Thursday February 14, 2002 6:30 AM CST

Spencer is off to daycare this morning and I'm off to work. His cold seems to be much better, still a little runny nose and cough, but nothing like over the weekend. Hopefully, we can keep him healthy for the next week so that we can start chemo on time, Feb. 25.
Happy Valentine's Day!

Tuesday February 12, 2002 10:11 AM CST

Spencer and I admitted to CMH at 1:00AM Monday morning with fever and neutropenia. Did blood work up, RSV test and influenza test, both of which is negative, so more than likely, just a bad cold. He is on antibiotics and will probably be inpatient until Wednesday morning. His fever broke a few hours after we came in, so at least today he can be out of his room and off to the playroom.

Friday February 8, 2002 1:56 PM CST

We have made it through our doctors appointments and returned home. Spencer's counts are dropping and he has picked up a cold, more so just a cough, hopefully that won't get the best of him since his counts are low. Overall, he is feeling much better. He is eating and drinking and playing pretty much like normal. Don't have any big plans for the weekend, just try to stay healthy!

Wednesday February 6, 2002 6:08 PM CST

Good news, Spencer made it throught the day eating, drinking and not being sick. He had a good day at day care and seems to be feeling fine. Tomorrow, he goes to daycare and I to my doctor's appointment, then Friday, back to KC for his clinic appointment. I'll return to work on Monday!

Tuesday February 5, 2002 4:35 PM CST

What a day! Just as I was heading out the door to work, Spencer's nurse called to see how our night had went, I gave her report, and she decided we better come to clinic to get some IV nausia meds and fluids. I called school, changed clothes and off we went to KC. Started Spencer of Fenergen, and guess what, we had a reaction so then he had to have Benadryl to off set the Fenergen. What started out to be a one-hour get fluid trip turned into a 3 1/2 hour clinic stay. Had to cancel my appointment in St. Joe and rescheduled it for Thursday, but we're home, Spencer has slept all afternoon, just waking up and is hungry!!!! We'll see how it goes (and stays). Until later...

Monday February 4, 2002 4:50 PM CST

Spencer made it to daycare today and I made it to work, although a very stressful morning worrying about him, we made it through the day. He actually wanted to eat breakfast, amazing what influence the other kids have, and he kept it down! Lunch however, a different story, ate lunch, took his Zofran as scheduled, and up it all came! He did want a snack a little later and then after his nap, another snack, and so far so good! At least with a little food, his strength should get better! He is also drinking better so all in all, things are looking much better! He'll be at daycare for a half day tomorrow since Grandman Winnie is home from Texas, she is going to stay tomorrow afternoon while I run to St. Joe for my doctor appointment, like Spencer's aren't enough! Home health nurse comes tomorrow for labs so we'll see where we're at. Thanks for the thoughts and prayers that got us through today!

Sunday February 3, 2002 1:22 PM CST

It is Sunday afternoon and Spencer is sleeping. He hasn't had much life this weekend. Although the chemo week went well, I think the overall cumulative affects are catching up with him. He was pretty sick on Friday night and still isn't eating much of anything, I guess a week without eating would leave most anyone pretty tired and weak. He played a little while this morning, but really didn't even want to go feed the cows. We'll see how he is when he wakes from his nap, but I'm guessing he's not going to be up for daycare in the morning, but, we'll cross that bridge in the morning! We only take one day at a time around here!!!

Friday February 1, 2002 5:43 PM CST

We have made it home, and I've cleaned up the first puke! I was about 30 minutes past the 4 hour mark for Zofran, and guess what, I won't forget at 8:45. Spencer seems to be feeling fine otherwise, I think the ride home then chugging a glass of chocolate milk was just a little too much! He is playing with his dad now, building blocks and crashing them with his dozer. It is great to be home!!! Kansas City certainly looks like a "war zone" with all of the trees and power lines down everywhere from the ice storm. It was a really weird feeling to look out the windows of the hospital and not see all of the street lights! Mother Nature certainly took care of the "tree topping" business in KC this summer!

Thursday January 31, 2002 4:15 PM CST

Spencer is still feeling remarkably well this afternoon. I finally got him down for a nap so that he won't be a total bear! He finally ate a little lunch today, and kept it down. So far so good on the sickness side. We will finish with chemo in the morning and then head for home. Thanks for the thoughts and prayers that help make these weeks go as scheduled!!

Wednesday January 30, 2002 9:10 AM CST

Spencer has made it throught the first two days of chemo feeling great. We paced the hallways for hours with Spencer riding in his car! We were up early this morning for a while, had to change his bed and clothes, but he went back to sleep for me and is still sleeping this morning. He seemed to be feeling fine at 5:00. Chemo will start again today about noon and last until about 3:30, hopefully he'll nap through most of it again today. The weather is horrible, so no visitors will be making their way here, but at least we're warm and safe. I'll update later, this is usually the day we start feeling a little bum!

Monday January 28, 2002 12:25 AM CST

We admitted this morning to room 4621 which is back in the bone marrow unit, since the rest of the hem/onc unit is full. The nice part, a computer in my room so I can email whenever I want. Spencer's chemo is just getting started, his counts are good, so we're hoping and praying all goes smooth. Until later....

Friday January 25, 2002 4:51 AM CST

Spencer has been at daycare the past two days and is feeling "back to normal". He certainly enjoys being with the kids. We are scheduled to return for round #4 of chemo Monday - Friday next week, here's hoping it goes as smoothly as last month!

Monday January 21, 2002 6:30 PM CST

Just returned home from a short stay in the hospital. Spencer spiked a fever on Sunday night, so off we went. His immune system is much stronger than it was on Wednesday and the fever is just from an ear infection. We were sent home tonight with antibiotics for the ear infection and shouldn't have to go back until next Monday to start chemo, unless the bacteria cultures show something else. Spencer and I will be at home tomorrow, since he still isn't setting the world on fire and needs a couple of days of antibiotics before returning to day care.

Wednesday January 16, 2002 6:43 PM CST

Spencer had a clinic visit today. His counts are low and he is considered to be neutropenic (little to no immune system), but he is feeling fine. Everything else checked out okay. Home health will do labs again next week, until then, so long as he doesn't get a fever, he'll be going to daycare and staying at home.

Monday, January 14, 2001; 4:24 PM

Spencer returned to daycare today and had a great day playing with the kids. I'm sure his counts are still a little low, we go to clinic on Wednesday, but he was feeling so good over the weekend that we decided to go ahead with daycare, can't keep them in a bubble all of the time.

Saturday, January 12, 2002 at 02:56 PM (CST)

Spencer's counts were about the same as they were on Tuesday, so they scheduled us for another clinic appt on Wed. to check again, predicting he may need a unit of blood this time around. He isn't in the neutropenic level (no immune system) but he is low. He is feeling good though, playing and eating reasonably well. Hopefully, he'll return to daycare on Monday if all continues to do well today and tomorrow.

Saturday, January 12, 2002 at 02:56 PM (CST)

Wednesday, January 09, 2002 at 07:51 PM (CST)

Spencer and I stayed home today. His counts are really hitting bottom, he seemed to pick up a little stomach bug yesterday and had a rough day. Today has been better, but he has slept a lot. Tomorrow, a dear friend, Kathy, is coming to stay with Spencer so I can go to work and then Friday we are off to the doctor for labs again.

Monday, January 07, 2002 at 10:13 PM (CST)

Spencer had a wonderful weekend, very little nausia, a little vomiting, only when we try to get the Senecot down him. We're now giving it with chocolate syrup! He had a great day at the babysitters playing with all of the kids. A long day for me back to work, seems like the first day of school "again". Home health will come Tuesday afternoon to draw labs and see where are counts are then that will determine the rest of our week. Thanks to all who leave us messages...they get us through day to day, along with the prayers!

Friday, January 04, 2002 at 06:55 PM (CST)

We're home. Chemo went great today. The vincristine presented no problems at all. He had a little nausia today, but compared to past rounds, very little. He seemed very happy to get home and play with all of the new Christmas things that he had left at home, and see his daddy. A big thanks to our nurse Angie for getting us through today!

Thursday, January 03, 2002 at 09:45 AM (CST)

Carboplatin is over and other than one little episode of being sick last night, Spencer is doing great. He was a little slow to get moving this morning, but as I write, he is upstairs riding up and down the halls in a car with the nurses. We have just today and tomorrow left and we'll be going home. So far so good...

Wednesday, January 02, 2002 at 10:48 AM (CST)

Happy New Year to all.

We have made it through the first 2 days of chemo without any issues. He even got up this morning and wanted to eat. (Last month by the third morning he got up and puked, big improvement). We get carboplatin and VP again today at 2:00. Hopefully is will go as smoothly as yesterday.
I'll update tomorrow.

Friday, December 28, 2001 at 06:51 AM (CST)

Spencer got to come back home on Wed 12/26 because his white count wasn't quite high enough to begin chemo again. It had gained from Monday, but still a little low. So much for getting this done over Christmas Break, but oh well. We will be reentering the hospital on Monday, HAPPY NEW YEAR's, and should return home on Friday.

Thanks to all who have signed the guest book!

Sunday, December 23, 2001 at 11:13 PM (CST)

Merry Christmas to all!

Spencer and I will be headed to CM the day after christmas, providing his counts are high enough.

Have a great holiday and keep the prayers coming!

Sunday, December 23, 2001 at 11:06 PM (CST)

To bring everyone up to date, on September 15,we found a tumor in the lateral ventrical of Spencer's brain. This followed several weeks of vomiting. We were immediately transferred to Children's Mercy and underwent surgery on September 16. The official diagnosis is Choroid Plexus Carcinoma, a very rare pediatric brain tumor. Children Mercy (CM) has only treated one other case, but there are only a hand full world wide. Spencer began chemo on 10/22/01, spending one week at a time in the hospital. We had a return trip from 10/31 - 11/8 for a bacterial infection in his Hickman port. We did round 2 the week after Thanksgiving, going very smooth until the last day when Spencer had a seizure. Not exactly sure why, we'll see what happens in December. The current protocol is to do chemo every four weeks with the last round in March, followed be an MRI. Providing nothing is found, we'll just keep having MRI's.
We appreciate the prayers, miracles do happen!

Sunday, December 23, 2001 at 10:42 PM (CST)

Spencer has been feeling wonderful and looking foward to Christmas. We will be going back to CM for chemo the day after christmas and will stay for a week, providing his counts are high enough.

Merry Christmas to all.

Wednesday, November 07, 2001 at 06:59 AM (CST)

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