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Monday, February 19, 2007 1:19 PM CST Living Life!
Friday, February 16, 2007 3:57 PM CST THINGS ARE GOING FROM BAD TO WORSE! I'M LOST.................
Monday, February 5, 2007 1:48 PM CST Our new puppy is named Taffie, Isn’t she just the cutest! I have more pictures that I will get posted soon.
Everything is going great around here. Carly is having some Neuropsychological testing done on Wednesday. We really need to find out why she is having such a hard time in school with outbursts and anger. Actually I think the teachers need the testing more because Carly did fantastic last year in Kindergarten, and only started having these problems this year but either way answers are needed. Chuck is coming up with us because we are both against drugging kids with ridalin(sp) and DX everything to ADD – ADHD not that that is not a serious medical condition but there has been a lot of research in the area of the late effects of such extreme treatments for cancer, that years later problems could arise both mentally and physically and we just want to make sure she will get the correct treatment, if any, that will be helpful to her.
Hope everyone stays happy and healthy!!
Love, Karen and Carly
Thursday, December 7, 2006 1:59 PM CST SCANS ALL CLEAR! WAY TO GO CARLY!!!
OH YEAH, I GOT MY PUPPY!!!!!!!
SHE IS SOOOOOOOOOOOOOOOOOOOOOOOOO CUTE!
I'LL POST PICTURES SOON.
Wednesday, November 29, 2006 9:00 AM CST I HOPE EVERYONE HAD A NICE THANKSGIVING. I ATE TOO MUCH AS ALWAYS. I HAVE BEEN BAKING A LOT OF YUMMY TREATS, AND THE GIRLS HAVE HELPED A LOT, IT IS SO MUCH FUN WITH THEM LATLEY, THEY ARE STILL LITTLE GIRLS BUT ARE SO HELPFUL AND SMART AND JUST THE LIGHT OF MY LIFE! WELL, I BRAVED THE STORES ON BLACK FRIDAY AND WAS UP AND AT WAL-MART AT 5:00AM! I HAVE ALL MY SHOPPING DONE FOR THE GIRLS.I GOT SOME GREAT DEALS BUT IT’S HARD TO FIGHT ALL THE CROWDS, BUT IT WILL BE WORTH IT CHRISTMAS EVE SEEING THEIR FACES LIGHT UP. I'M GOING TO TRY SOMETHING NEW THIS YEAR AND BUY THE REST OF THE PEOPLE ON MY LIST STUFF OVER THE INTERNET. LESS RUNNING AROUND AND THAT IS ALWAYS A GOOD THING. I’M HAVING A HARD TIME FINDING THINGS FOR ALICIA, SHE WANTS STUFF FOR HER ROOM BUT I CAN’T FIND A THING. SHE SAID GIFT CARDS WOULD BE OK BUT WHAT FUN IS OPENING THAT ON CHRISTMAS EVE!
CARLY IS GOING IN FOR HER SCANS NEXT WEEK TUESDAY AND WEDNESDAY AND ALL I WANT FOR CHRISTMAS IS FOR THEM TO BE CLEAN (AND A PUPPY!)
ENJOY THIS HOLIDAY SEASON, HUG AND KISS YOUR KIDS!
KAREN AND CARLY
Thursday, November 9, 2006 3:32 PM CST Hello everyone!
Boy, it’s been so long I don’t even know where to begin. First I want to thank you for coming back to check in on Carly, she has been doing great! She had her scans last June and they came back normal! Her next scans are set up for the beginning of December. I can come up with reasons at each scan time to be nervous; the first 2 years was when “it” was most likely to come back, 2 1/2 was just a little too close to 2 years and now at 3 years another girl I have been following just relapsed at her 3 year post transplant scans. There are a few Caringbridge sites that I follow, where the family is going through the hardest time of their lives and the one thing that holds them together is their faith. One Mom in particular whose son Jacob passed away in June is such an inspiration. She misses her son terribly but accepts that he is with his Lord and forever happy and safe. Then there are the Mom’s that just can’t accept it and are torn apart. I pray every day for them, and hope that I never have to find out what kind of Mom I will be in that situation. I went to a friends Bible Study last Friday and was astonished to learn the book they were studding was “Battlefield of the mind” by Joyce Meyer. Just from the title, before I even read anything I was sure this was written for me! The first line on the back cover about what the book is about pretty much sums it up for my messed up mind, “Worry, doubt, confusion, depression, anger, and feelings of condemnation” Funny, I don’t recall being a subject for Joyce while she was writing this book. My husband doesn’t like it that I follow these children on Caringbridge sites, he thinks it will just upset me, but when Carly was going through her battle, nothing was more comforting than reading all the thoughts and prayers for Carly and our family. If I can offer another family hope through my experience with Carly it’s worth it. But this is where the battle comes in. I seem to be drawn to the sites where the kids are having a really hard time. And when I come across a child with relapsed NB fear just consumes me. A day won’t go by without me checking in on them, I follow their journey and become so close to them that when they earn their wings, I feel like a part of me has died too. I don’t know if this is some how a subconscious way of toughing me up for the inevitable or a way to keep me focused on the true blessing I have in Carly’s NED. I doubt I will ever be able to stop checking in on “my kids” but I’m hoping this book will help me find some peace in my thinking. Whew!
With all that aside, life really is good at the LeGrande House! Continuing with where I left off on my last journal is going to take a lot of thought. As you can still see in the photo album the girls had a great birthday! How do these kids grow up so fast?! We just bought a DVD recorder and I’m in the process of transferring all our home movie tapes over to disk and we have had a blast watching them. I only have video of us from about April 2004 when our very thoughtful neighbor bought us a Camcorder for Carly’s Make-A-Wish Trip. I don’t have much of the girls before Carly was sick and that really makes me sad. I would give anything to have video of the girls when they were 1, 2 and 3. I have a tape that the University of Wisconsin Twin Center did on the girls when they were babies, but that is pretty much them sitting in high chairs and being analyzed how they react when some strange looking puppet or person comes into view, real exciting stuff. There is one little snippet of video when Alicia was making a commercial for a school project and they had Carly make a PB&J sandwich and another of just a minute or two of the girls in the playroom. To see Carly’s head of curly hair just breaks my heart, she was (is) so beautiful. And Kaylee was just a little peanut! I will treasure them forever. I just love taking pictures; I have them all over the house. The other week I dressed the girls alike and took them out in the yard to get some fall pictures, and if I do say so myself they turned out great. I hope you enjoyed some of them in the slide show above. We didn’t get around to taking any kind of trips this past summer, we almost went to the Mall of America, but at the last minute changed our minds. We spent the most part of the summer at the club in the pool, we all love to swim and I’m still trying to convince Chuck to let us get an in-ground pool.
I have been working full time most of the year with part time just these last few months, I enjoy the day a week off but would like to be full time now that the girls are in school. The girls are doing well in school but don’t seem to enjoy it as much as Kindergarten last year, something about all that homework, welcome to the real world! Carly has been having a little bit of a hard time this year. She became very close to her teacher last year and it took awhile for her to adjust to a different teacher. She has been acting out in class when she is told to do something that she doesn’t want to and it has earned her a couple of lost recesses. She has had some issues of roughness with other kids on the playground too. It definitely is not acceptable but I think I do understand why. It has taken Carly a long time to recover from her transplant and she is still trying to regain her strength. She has been slower physically than the other kids and I think she has just had enough of them running away from her and not including her in their play. The way I see it is she is about a year behind all the other 6 year olds in physical and mental strength. In class when she doesn’t understand something she acts out by like throwing her pencil on the floor instead of asking for help, and on the playground she has learned from her own experience to push around the weaker and smaller. Last year Carly had every kind of special teacher in every area from hearing to Phy Ed, this year it’s like they don’t have a clue about her and what she has been through! Last week I had had enough of her teacher calling me every other day with something Carly had done wrong that I just broke down. I will be the first to admit that I babied Carly A LOT, but this past year and a half she has been treated just like Kaylee, maybe even a little tougher to straighten her out. I was really coming down hard on Carly for every little thing she did, I didn’t understand why she was misbehaving so much. Kids react to their surrounding and Carly is not in a good one and is acting out because of it. I don’t like Carly’s teacher at all! Both Chuck and I think she is too strict with her kids, and even though she said she knew about Carly’s past she doesn’t have an ounce of compassion or understanding when it comes to her. I requested that Carly be transferred to another teacher because of all this, but the principal refused. Even before school started when I would mention to other moms the teachers they got, they would all say they thought it should be the other way around, Kaylee’s teacher is very helpful, kind and understanding a lot like Carly’s teacher last year. There are conferences this Monday and believe me Mama Bear has her claws out, times are a changing!
Things have been on the up’s and down’s for both Chuck and my family’s. Chuck’s mom had surgery again this year on her knee and it is taking a while to heal. Carol his sister got really sick last month and it was found that she only had half the blood in her body that should be there, turns out she had a massive bleeding ulcer and spent a week in the hospital. She still is not feeling the best. But the hardest thing as got to be that Chuck’s dog that has been living with his mom died yesterday. Keily was very old and in poor health but it still hit us all hard, she was a great dog. We miss you keily! My father suffered a mild heart attack and has to change his eating routine and Oh my God, exercise! He is doing OK now, I just thank God he has Becky to watch over him. My sister continues to battle her cancer, but finds a lot of joy in her church friends and family. My Nephew is getting married my Step Sister is getting divorced and life goes on. . .
HUG YOUR KIDS !
Love to you all, Carly and Karen
Wednesday, November 8, 2006 10:57 AM CST UP DATE COMMING SOON, I PROMISE!!!
Friday, May 12, 2006 3:33 PM CDT It has been celebration time around our house lately. First, the girls turned 6 on May 8th and what a fun day we had! First we went to Build a Bear Workshop, Kaylee got a kitty and Carly got a dog, so not really a Build a “Bear” but it’s what they wanted, so be it. That really is a cute store, I’ve never been in there before but I’m sure we will be going back because the girls are already wanting more stuff for them. That place has everything for the animals, clothes, shoes, hats, beds, cell phones and even wigs! After that we were off to their party. It was at Pump it Up. Talk about the perfect party place! The girls just love those big bouncy houses that they have a fairs, well Pump it Up is a place that has huge inflatable bouncy houses. But not just jumping ones, there are slides and obstacle courses and climbing areas it’s just unbelievable. There were two different arenas for the kids to play in than we went to a room for the cake and presents. It was a great day and as you can tell by the picture in the photo album a tiring one too. May 8th was also Chuck and my 7th anniversary. Having the girl’s birthday on our anniversary kind of takes precedence, so Chuck and I have yet to celebrate it properly, hopefully we can get to a movie or dinner this weekend!
The girls are all doing well in school. Alicia just got a letter from the school congratulating her on raising her GPA. She just told us that she has been kind of slacking off again, so let’s hope she kicks it into gear for the remainder of the year. Carly and Kaylee are doing awesome in kindergarten, Carly is reading a little better than Kaylee, so I need to get on that a little. They both just love to read so I want to get them doing it more on their own. They both have music concerts coming up next week that I can’t wait for! They both get so proud of their accomplishments, and so do I.
Medically Carly is doing just super! She has had a couple of bad ear infections, but I can handle that. She seems to be doing just fine with her hearing aids, sometimes she hates to wear them, other times she asks for them to be put in. Her school got her a FM System that is working out very well. What it is, is a little microphone that the teacher wears and her voice transmits to little receivers hooked on Carly’s hearing aids, so that she won’t have all the background noise and just be able to hear the teacher better. The school has been great with all Carly’s special needs.
Carly’s has her scans coming up in June. Always a little stressful time, but the farther out she gets the better. Please keep her in your thoughts and prayers.
I have some very sad news to share. Dear sweet Emma has passed away. This amazing child overcame so much. Emma had AML, relapsed, had a Bone Marrow Transplant than developed GVHD of the lungs that caused her to struggle with every breath. It got so bad that in February of 05 she was sent home on Hospice because there was nothing more they could do. She was on oxygen 24/7 and meds to keep her comfortable. To the astonishment of everyone Emma slowly got better. She was just like every other child for the last year, starting 1st grade, making all kinds of friends and just being a kid. On May 1st Emma started to have breathing problems again. She was admitted to the hospital with pneumonia and influenza B. Her little worn out lungs just could not keep up and she was put on a ventilator. Prayers from around the world were not enough to save her this time and she earned her wings on May 9th. A link to Emma’s site is at the bottom. Please say a prayer for the family.
Hug your kids EVERYDAY!!!
Love, Karen and Carly
Thursday, May 11, 2006 9:40 PM CDT ENJOY THE PICTURES, UPDATE COMMING SOON! ALL IS GOOD.
Thursday, February 9, 2006 12:43 AM CST Everything is going great, girls love school and I love my new job. I'll write more soon.
Love, Karen and Carly
Sunday, December 18, 2005 4:29 PM CST MERRY CHRISTMAS EVERYONE!!
LOVE KAREN, CARLY AND THE WHOLE LEGRANDE FAMILY.
Saturday, November 26, 2005 1:57 PM CST "The big "C" I heard someone call it.
Another just whispered the word.
That we don't even dare to say "cancer" out loud
Gives it power it doesn't deserve.
So I'm giving that letter new meaning
And refusing to give in to fear
By reclaiming the power for you and for me
And by saying these words loud and clear:
Let the "C" be for "CURE" and "COMPASSION."
Let it stand for the "CANDLES" we light,
And a "CHORUS" of voices shouting, "You 'CAN"!"
To all who will take up this fight.
Let the "C" be for "CASH CONTRIBUTION"
("Credit" or "Check" will work, too).
Let it stand for "COMMITMENT" and "CHECKUPS" and "CHEER,"
And the "CHILDREN" "COUNTING" on you.
Let it mean that we know our "CREATOR"
Is beside us each step of the way,
And remind us to "CALL" on His strength and His love
And to "CELEBRATE" every new day.
To everyone facing this "CHALLENGE,"
I say it's a fight we can win.
Tell all who will listen, starting today,
The "C" is for "COURAGE," my friend.
~Written by Kathy Cawthon~Cancer Survivor
Copyright 1999
A Mother's Love
Author unknown
A Mother's Love is like an island
In life's ocean vast and wide,
A peaceful, quiet shelter
From the restless, rising tide ...
A Mother's Love is like a fortress
And we seek protection there
When the waves of tribulation
Seem to drown us in despair ...
A Mother's Love's a sanctuary
Where our souls can find sweet rest
From the struggle and the tension
Of life's fast and futile quest ...
A Mother's Love is like a tower
Rising far above the crowd,
And her smile is like the sunshine
Breaking through a threatening cloud ...
A Mother's Love is like a beacon
Burning bright with Faith and Prayer,
And through the changing scenes of life
We can find a Haven There ...
For A Mother's Love is fashioned
After God's enduring love,
It is endless and unfailing
Like the love of Him above ...
For God knew in His great wisdom
That He couldn't be Everywhere,
So He put His Little Children
In a Loving Mother's Care.
"Children think we are their strength, the truth is they are ours"
Just For Today "
Just for this morning, I am going to smile when I see your face and laugh when I feel like crying.
Just for this morning, I will let you choose what you want to wear, and smile and say how perfect it is.
Just for this morning, I am going to step over the laundry, and pick you up and take you to the park to play.
Just for this morning, I will leave the dishes in the sink, and let you teach me how to put that puzzle of yours together.
Just for this afternoon, I will unplug the telephone and keep the computer off, and sit with you in the backyard and blow bubbles.
Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck, and I will buy you one if he comes by.
Just for this afternoon, I won't worry about what you are going to be when you grow up, or second guess every decision I have made where you are concerned.
Just for this afternoon, I will let you help me bake cookies, and I won't stand over you trying to fix them.
Just for this afternoon, I will take us to McDonald's and buy us both a Happy Meal so you can have both toys.
Just for this evening, I will hold you in my arms and tell you a story about how you were born and how much I love you.
Just for this evening, I will let you splash in the tub and not get angry.
Just for this evening, I will let you stay up late while we sit on the porch and count all the stars.
Just for this evening, I will snuggle beside you for hours, and miss my favorite TV shows.
Just for this evening, when I run my finger through your hair as you pray, I will simply be grateful that God has given me the greatest gift ever given. I will think about the mothers and fathers who are searching for their missing children, the mothers and fathers who are visiting their children's graves instead of their bedrooms, and mothers and fathers who are in hospital rooms watching their children suffer senselessly, and screaming inside that they can't handle it anymore.
And when I kiss you good night, I will hold you a little tighter, a little longer. It is then that I will thank God for you, and ask him for nothing, except one more day..."
~author unknown~
**UPDATE**
All Carly's scans were OK !!!
Thank you for your prayers
Seasons greetings,
Hope everyone had a great Thanksgiving, we sure did, once again we had so much to be thankfull for. Carly is still doing great! She is just loving school and has made a lot of new friends. We had conferences the other week and her teacher said she is right where she should be. Carly will be having her scans next week, it has been six months this time. I'm a little nervous but am sure everything will be just fine. I'll post the results as soon as I can. I will try to update again before Christmas, but if I don't get around to it I hope everyone has a very Merry Christmas, enjoy every moment of it.
Love Karen and Carly
Wednesday, October 5, 2005 9:28 PM CDT Boy, where has this summer gone! We have had a great couple of months, as is evident with the lack of updates. All is going well with Carly she even just had her 3 month check up with Dr. DeSantes today. No scans this time she is only going to be getting them every 6 months now, kind of scary but they are really a drag! This Friday is Carly's 2 year transplant date! What a milestone. Again I'm not looking forward to the end of the month remembering what happened way back then. The girls are loving kindergarten so much, they are going on their first field trip tomorow, to a pumpkin patch and they are so excited. Our trip to Michigan was the best, Mackinic Island is so beautiful, I can't wait to go back. Well fall is upon us and I just love it, this is my favorite time of year. I just wish it would cool down a little, it was 86 today and so humid. It is raining now so hopefully it will be nicer tomorow. I got the girls their halloween costumes today, Kaylee is Tinker Bell and Carly is a SUPER HERO! I will get picturs of them soon and put them on here. Well that's about it for now thank you for checking in on Carly have a great day.
Love Karen and Carly
Monday, July 25, 2005 9:06 PM CDT Thank you all for continuing to check in on our little miracle girl. I am happy to say that she is still beating the odds by having her scans all come back clean! Next set of scans will be in October, that will be two years post transplant!!
The girls and I traveled down to Chicago last weekend for the Children’s Neuroblastoma Cancer Foundation Conference. It was wonderful to meet some of the parents of the children I keep up with on Caringbridge and to meet some new families too. Some of the best Doctors around the country came to speak, including our own Dr. Sondel. It was very interesting to hear about the new ways they are trying to treat this awful disease, both at diagnosis and relapse. I was a little apprehensive about going because I did not want to be overwhelmed by all the heartbreaking stories, but to tell the truth there were more happy than sad. They had a playroom for all the kids while the parents were in the meetings and I literally had to drag the girls out at the end of the day. (see Carly as Winnie the Pooh in the photo album) There also was a dance on Friday night that was a blast, the girls danced all night! I sure hope they are able to have one next year.
We are continuing to have a busy summer, we joined Dolphins Cove and the Prairie Athletic Club and have been there swimming at the water park almost every day, and Alicia and I have been trying to work out, she is doing better than me. It is almost better than the Dells but we will probably be going up there soon too. We have gone white water rafting on the Wolf River to a couple picnics, and just yesterday went to Six Flags Great America. We were going to go up to Hayward for the World Championship Lumberjack Festival next week, but we found out about it too late and there are no hotel rooms left up there, maybe next year. At the end of September we are going to go up to Manitowoc and take the S.S. Badger Ferry over to Michigan and then up to Mackinic Island. Chuck did it a long time ago and a friend at work said it was the best vacation she ever had so we are all looking forward to it.
I hope everyone is having a good summer.
Keep praying for all the children.
Love Karen and Carly
Thursday, June 16, 2005 10:34 PM CDT Hope everyone is enjoying their summer so far! We sure have been making the most of it. We all went up to Circus World Museum last weekend, it was so stinking hot but we had the best time. Alicia, Kaylee and my niece Hannah rode an elephant, I wanted Carly to but she wanted to go on the pony’s instead, still a little cautious. The circus itself was really fun, the girls just loved the Clowns and the dog act, and during the magic part of the show where the lady changed her outfit like 6 times in the blink of an eye was really fascinating.
Like I said the weather here has been just unbelievably hot this past week, so we took advantage of it by going swimming at Dolphins Cove, it was the first time we have gone there and was really fun, but it is part of a health club and we just had a pass for the day. We will probably be spending a lot of time at the Aquatic Center here in town too.
Last Saturday Carly held her second annual Alex’s Lemonade stand, we had it in front of Wal-Mart and raised almost 250.00 for pediatric cancer research. Alex is a little girl that had Neuroblastoma and about 5 years ago wanted to raise money to find a cure, so she started selling lemonade in her front yard. Her motto is “Fighting pediatric cancer one cup at a time” It has grown to hundreds of lemonade stands all around the country. We are very proud to be involved in something as worthy as this. Sadly, Alex passed away last August, but her legacy continues! www.alexslemonade.com
So everything has been going great around here, my job is really keeping me busy, I love it but I really miss being with the girls, but God knows we need the money and to tell the truth it helps with my sanity, anyway they absolutely love going to Joan’s so I have no guilt there. I just want to spend as much time with them as I can before they go to school in the fall. Last but not least, Carly will be having her scans the end of July, please keep her in your prayers, along with all the other kids fighting for their life.
Love, Karen and Carly
Saturday, April 16, 2005 9:39 PM CDT Two years ago today our lives changed forever. I have just been looking back on past journal entries and can’t believe we all went through that. Thank you God for letting Carly stay with us!
Carly has been doing great! She just had her 3 month scans and everything came back clean!!!!!!!!!!!!!!!!! We also had a appt with the Renal (kidney) Dr’s and they have increased her Bi-Citra but not for what she was originally taking it for, which was to keep her potassium level down. Now she is also taking it to reduce acid levels in her blood. She is going to go in on Tuesday to have another Echo of her heart too. But all in all Dr. De Santes is very pleased with her, me too! Carly has also been doing OK with her hearing aides, she doesn’t like to wear them too much and has finally figured out that she can remove them herself, so I have to be quite firm that she can’t do that. I felt so bad the other day because I had forgot to turn them on, so she went the whole day with her ears basically plugged up. One of them also gives off a lot of feed back if it is not in just right, I mean you can hear it squeaking like 10 feet away, so I can only imagine what it must sound like to her. I tell her to tell me when they are not on or that they are squeaking so I can readjust them, but she is just so obliging. The girls had kindergarten registration and are so excited about going to school. Carly went through Early Childhood Evaluations to see if she could use any help anywhere and after a lot of testing for speech, hearing, motor skill and the like, it was determined that the only place she really needed any help was with gross motor skills. Carly is just not up to her age level when it comes to running and jumping and hopping and balance. So she will be going to do physical therapy twice a week to help her out. I also think that with the nice weather now we will be outside riding bikes and going to parks and climbing on things, she will be caught up to the other kids by fall. And believe me it is not a lack of determination she tries to do everything and it breaks my heart when she gets upset that she can’t keep up or do what the other kids are doing but I just tell her to keep trying, and she does!!! Well that is about it for now, we are just gearing up for a fantastic summer, hope you all have the same!!
Love Karen and Carly
Sunday, March 20, 2005 10:57 PM CST See the new photo's, I have an update comming.
Everything is going great!!!!!!!
Saturday, February 5, 2005 8:56 PM CST ******************************************************URGENT******************
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PLEASE PRAY FOR EMMA (LINK AT BOTTOM)
SHE IS FIGHTING FOR HER LIFE.
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I can’t believe how these two months have flown by! Hope everyone had a nice Christmas, ours was absolutely wonderful. the girls were spoiled beyond words. Just being together was enough for me.
As for our little Carly Q she is recuperating from a nasty stomach bug. Last Monday she started having diarrhea and threw-up. It just keep getting worse and on Thursday she could not even get out of bed, she did not even want to go to Joan’s house, so I knew she was really not feeling well. I had been told by the Doctors to treat Carly like any other “normal” child when it comes to health issues now, and I was debating on weather or not to take her to the Doctor. I would think if this was Kaylee would I take her to the Doctor, I probably would. Unfortunately, our Pediatrician does not work on Thursdays so I made the choice to just take her up to the ER and have them take a look at her. They put in an IV because she was dehydrated and gave her some fluids. They also gave her a X-ray because her heart rate was up, it looked good except one small lobe on the bottom of her lung looked like it might have collapsed from her vomiting. So they thought it would be best if she stayed overnight so they could just keep a eye on her. We got home Friday night, short stay. Our friend Sarah was up there, she is going to be having her Transplant this Tuesday, another friend Emma had just gone home that morning, all three of us were up there at the same time in 2003. Unfortunately they are having continuing health issues, please say a prayer for them and all the children up there.
Other than that Carly has been doing GREAT! She is getting enrolled in Early Childhood, to give her a little head start for starting school in the fall. (I love saying that!) She will be getting help in speech, hearing, motor skills and a few more I’m not sure of yet. I have only met the hearing teacher so far. She is going to be getting her hearing aids in a week and I’m excited to see how much it will help. The last time we were in doing the audiogram they were finely able to get a good reading on her loss and although it is distressing to realize the extent of it, it is nothing compared to what could have happened to her.
We started out the new year by tackling a little remodeling project on our kitchen and living room, we are doing all the work ourselves and since I am back at UBC I have been able to get a lot of the materials at little to no cost, that really helps. It is turning out to be a little more than I bargained for but I just keep reminding myself how nice it will be when done.
Thank you all so much for continuing to check in on Carly, updates are few and far between these days, because we have been busy living life to it’s fullest! Please do the same.
All our love, Karen and Carly
If God brings you to it, He will bring you through it.
Happy moments, praise God.
Difficult moments, seek God.
Quiet moments, worship God.
Painful moments, trust God.
Every moment, thank God.
Sunday, December 12, 2004 3:30 PM CST MERRY CHRISTMAS!
Tuesday, November 9, 2004 1:16 PM CST WOW, IT HAS BEEN A WHOLE MONTH SINCE I HAVE UPDATED! GUESS TIME FLIES WHEN YOU ARE HAVING A LIFE.
AS FAR AS CARLYS MEDICAL CONDITION, IT COULD’NT BE BETTER, SHE GOT THE TUBES IN HER EARS AND IT SEEMS TO HELP A LITTLE, WE WILL BE RECHECKING THEM IN A WEEK TO SEE WHAT WE WILL BE DOING ABOUT HEARING AIDS. SHE ALSO HAS STARTED HER IMMUNIZATONS AGAIN, SHE GOT 3 OF THEM AND A FLU SHOT, IT WAS NO FUN! SHE NEEDS ANOTHER 2 IN A WEEK AND THEN AGAIN THE BEGINNING OF DECEMBER, WITH 2 MORE 2-4 WEEKS LATER. THAT WILL BE 14 MONTHS POST TRANSPLANT. SHE WILL NOT NEED ANYMORE UNTILL 24 MONTHS POST TRANSPLANT. THAT SEEMS SO FAR AWAY BUT IT WILL BE HERE BEFORE I KNOW IT. IT HAS BEEN OVER A MONTH SINCE WE HAVE SEEN A DR. AND IT WILL BE 2 MORE BEFORE WE ARE SCHEDULED TO. SHE WILL BE HAVING HER SCANS THEN. WE ARE ALSO KEEPING AN EYE ON HER KIDNEYS; SHE HAS BEEN TAKING A MEDICINE TO HELP KEEP THE POTASSIUM DOWN BECAUSE HER KIDNEYS ARE NOT DOING THE JOB. SO HOPEFULLY THEY WILL HAVE REPAIRED THEMSELVES AND WE CAN STOP THE MEDICINE, SHE WOULD BE TOATLY OFF MED’S THEN. I CAN REMEMBER WHEN I HAD TO HAVE A CHART ON THE FRIDGE TO KEEP TRACK OF ALL OF THEM. SO OTHER THAN A LITTLE COUGH AND RUNNY NOSE SHE IS JUST A HEALTHY, SPLENDED, LITTLE BUNDLE OF JOY.
HALLOWEEN HAS COME AND GONE. I WAS SO ON EDGE LEADING UP TO IT, NOT KNOWING HOW I WAS GOING TO HANDLE IT. AS MOST OF YOU KNOW IT WAS LAST OCTOBER 31 WHEN WE WERE TOLD SHE WOULD NOT MAKE IT THROUGH THE DAY. ALTHOUGH IT WAS A HARD ANNIVERSARY TO DEAL WITH I DECIDED TO TURN IT INTO A CELEBRATION, BECAUSE THAT IS REALLY WHAT IT SHOULD BE, SHE DID NOT DIE, SHE SURRIVED AND THAT IS REASON TO CELEBRATE, EACH AND EVERY DAY. BOTH OF THE GIRLS WERE CHEERLEADERS, THEY WERE SO CUTE. WE ALL WENT TO A COUPLE OF PARTIES WHERE THEY PLAYED GAMES AND GOT A LOT OF CANDY.
SO NOW THE HOLIDAYS ARE JUST AROUND THE CORNER, THE GIRLS ARE GETTING REALLY EXCITED, I THINK I MIGHT PUT UP OUR DECORATIONS EARLY, I GOT A BUNCH OF NEW STUFF AFTER CHRISTMAS LAST YEAR AND I CAN’T WAIT TO SEE IT, I DON’T EVEN REMEMBER ALL I GOT. THE GIRLS REALLY WANT SNOW, I CAN WAIT. THEY ALSO WANT JUST ABOUT EVERY TOY THEY SEE ON TV, I HAVE SUCH A HARD TIME CONTROLING MYSELF WHEN IT COMES TO BUYING THEM PRESENTS, I HAVE ALWAYS BEEN LIKE THAT EVEN WITH ALICIA.
BEFORE I CLOSE THIS OUT I HAVE TO ASK YOU ALL FOR SOME HELP. THERE IS A LITTLE GIRL NAMED SARAH THAT ALSO HAD NEUROBLASTOMA, SHE FINISHED UP HER PROTOCOL JUST AFTER CARLY STARTED HERS. SARAH HAS JUST RELAPSED. THIS FAMILY IS THE MOST LOVING AND CARING FAMILY I HAVE EVER KNOWN. THEY NEED OUR PRAYERS SO BAD NOW. SARAH WILL HOPEFULLY BE HAVING A STEM CELL TRANSPLANT AND THEN BE DONE ONCE AGAIN WITH ALL THIS CANCER STUFF. NO LITTLE CHILD SHOULD HAVE TO GO THROUGH THIS EVEN ONCE, BUT TWICE IS JUST MIND-BOGGLING. PLEASE VISIT HER SITE AND LET HER AND HER FAMILY KNOW THAT YOU ARE PRAYING FOR THEM. WWW.CARINGBRIDGE.ORG/WI/SARAHBEAR, HER LINK IS ALSO BELOW.
ALL OUR LOVE
KAREN AND CARLY
Friday, October 8, 2004 9:17 PM CDT I’m not sure if it is that I have been too busy to update lately, or that I have keep myself busy so that I don’t update. This is turning out to be a tougher time than I thought it would be. One year ago yesterday Carly had her transplant. I can’t believe how fast this year has gone, Carly has made some pretty amazing strides in the last 12 months. I have just been thinking these last few weeks how close we were to losing this precious child; Halloween is going to be a very hard day. I can’t imagine it being any scarier than it was last year. Also a really strange thing happened last night, I had put the girls to bed and they had been sleeping about an hour when Carly started to scream and cry. She used to have terrible nightmares when we first came home from the hospital after her transplant, but they have been few and far between lately. I could not get her to wake up so I just held her and tried to calm her down. When I finally realized what she was screaming about, I started to cry. She was saying things like, “no don’t, don’t hurt me, that hurts, I want to go home, let me go, stop it, go away.” it was just heartbreaking. For it to have happened on the anniversary of her transplant was so strange. I have prayed and prayed that she would lose the memories of those awful days, but it seems as though they are still fresh in her mind, I know as time goes by she will forget, but I never will. Carly had her scans last week and when we went in for her clinic visit I heard those beautiful words once again, “clean scans” I can take her to our regular pediatrician to get her immunizations started again too. We will all need to get a flu shot too because her immune system is still a little fragile. Carly’s hearing has seemed to have gotten worse these last few months, we knew there was nerve damage and she would be getting hearing aides, but her hearing has continued to deteriorate and that should not happen, I mean we are practically yelling at her so she can hear us, and she is always asking us to say it again or say it louder. When we were in clinic last week, Sharon the NP could see that she had an ear infection and they both looked really plugged up. Carly had an appointment with a ear nose and throat specialist the following week to get fitted for hearing aids, so Sharon thought maybe some of her hearing loss was just due to being plugged up, she put her on amoxacillin in hopes it would help clear it up and help her hear. Well the amoxacillin did absolutely nothing and the ENT Dr. agreed with Sharon that maybe if we got her ears cleared up she could hear better, she will still need hearing aides but a lot of her hearing loss could just be that sound can not get through all the junk in there. We came to the conclusion that Carly should have tubes put in to clear them out and retest her hearing in a month or two. So Carly will have surgery to insert the tubes on October 20th. He could either do them right in his office or up at the hospital, with everything Carly has been through we thought it best to do it up at the hospital. It is all done on an outpatient basis so we will be home that night. I have talked to Carly about her hearing and asked her if it was hard for her to hear things, yes, she would say. I would ask her if she wanted to hear better, yes, she would say. But she never complained about it, she just made do. I sure love her! We all do. So that’s about it on Carly’s medical condition, on her everyday life it couldn’t be better. With me back to work, the girls have been going to a very nice lady that also watches two other little girls, when I go to pick them up they don’t want to leave, kind of sad for me but it just reassures me that they are having fun. Alicia is a typical 15 year old, I hardly ever see her, she is becoming such a beautiful young lady, she has no idea how much I love her. Fall is my favorite season we are hoping to get up to Silver City, MI. to the Porcupine Mountains in the next few weeks to see the colors and just have one final get away before the long cold winter. Take care, and thank you for checking in on Carly.
Love, Karen and Carly
Friday, September 3, 2004 11:06 PM CDT We have had some celebrating around her lately, yesterday was Chuck’s birthday and today is Alicia’s!! HAPPY BIRTHDAY TO BOTH OF YOU, I LOVE YOU BOTH SO MUCH!!! I won’t say how old Chuck is but Alicia is now 15. She just started high school on Wednesday and loves it. I can’t believe I have a kid in high school!
Kaylee is all over her bout with pneumonia, I took her back to the Dr. today to have a check up X-ray and it still had a few blotchy spots and they want to compare it to the last one, but the Dr. says she is fine
.
Carly went back in for another hearing test and did really well so they were able to get a good idea how her hearing was, and it is not that good. We are going to go see another Dr. that will get her set up for hearing aids. At first I thought about waiting until she started school next year, but Dr. Puccetti said she might get behind in speech if we waited, I don’t want that so we are getting right in. the problem with her hearing is not as much volume as it is tone, she is not hearing how things are pronounced very well. But I also have noticed how she is saying “what” more often and even asking us to repeat what we have said. I feel sad for her that this has happened, and hope it won’t interfere with anything she wants to do in life.
I have gone from a few hours a week at UBC to 3 days a week. I could not be happier! I am doing a lot of things I did before and am learning new things too. I have had to find someone to take care of the girls when I go to work because Alicia is back in school now. Chuck has them on Monday because he has that day off, I think it will be really good for him to spend time with them alone, and maybe a little bit of an eye opener as to what it is like to be with them all day. On Tuesday and Thursday the girls will be going to a very nice lady named Joan, I worked with her husband at UBC, unfortunately he got cancer, beat it, relapsed, beat it again but developed pneumonia and passed away. It was so unfair how hard he fought the cancer and won but died from something totally unrelated, kind of like what Carly went through after her transplant, thank God she made it! Another guy I work with has a daughter just a few months older than the girls and has been going there since she was 6 weeks old. There is another 2-year-old girl there; her mom also works at UBC. We went over to visit her the other day and their first day there was Thursday, they had a blast and did not want to leave. So everything is working out fabulous!
Last year Barney came to town for a show. A friend and I were going to take our kids to see him, but things got busy and we never got around to it. The show we were going to go to was on April 1st. Carly was diagnosed on April 16th. I have always regretted not going and swore if he ever came around again I would do what ever it took to go. Well he is finally on tour again and I got the tickets!!!! I am so ecstatic about this, Carly watched nothing but Barney when she was in the hospital, and I almost wish I would have had her Make A Wish thing be to meet Barney. So I am trying to get her to meet him on my own, I e-mailed Hit Entertainment about maybe meeting him when we came down, but it has been over a week so I’m not sure if they will get back to me or not. Hey, I’m a mom on a mission, and I’ll walk right back stage if no one stops me!
Well that’s it for now, enjoy the rest of summer.
Love Karen and Carly
Thursday, August 26, 2004 8:12 AM CDT Carly’s PICC line broke on Tuesday night; I took her in to the hospital Wednesday morning to have them take a look at it. I was not sure what they would do, she needed the line for hydration and it was a Godsend when it came to blood draws. I noticed it was a little red and bumpy on Tuesday, but when we took the bandage off on Wednesday it was totally infected. So even if it had not broke it would still have had to come out. Dr. Puccetti was talking to me about other ways we could hydrate her, one way was a GI tube down her nose, not promising as Carly would probably pull it out. Another way was a GI tube inserted in her stomach, that would require sedation and I’m not all that happy on putting her out. So it was decided to try a med that could lower potassium and to push fluids, she will have labs on Friday so we will see then.
We all had a blast at Great America. The girls went on almost every ride they could, it took a little coaxing for Carly at first but then she was leading the way. Kaylee is feeling better but she ended up taking a nap in the stroller for about an hour, Carly went all day from 6:00am to 10:30pm she was skipping out of the park. We all want to go back for Fright Fest, they decorate the whole park and it is very scary and a lot of fun, Alicia wants to go with some friends, I think we will leave the girls at home this time and Chuck and I go alone. We are all heading up to the Great Wolf Lodge in the Dells next weekend to celebrate Chuck and Alicia’s birthdays, it is a getaway given to us by the Madison Firefighters Local 311, Thank You, and Guy’s!!
Work is going great; I really love it. When Alicia goes back to school the girls are going to go to a friends while I work, they can play with her kids and will have a blast, almost like another playgroup. I would really love to get them in preschool but it is so expensive, I think we would be paying what I earned along with some of Chucks pay, so that is probably out of the question.
Thank you for checking in!
Love Karen and Carly
Monday, August 16, 2004 9:06 PM CDT Sorry for the delay in updating, it has been a busy couple of weeks. Carly did finally have her bone marrow biopsy and it came back clean, thank you all for your prayers on that. We also had a clinic visit with Dr. DeSantes and he stopped two of Carly’s meds, yahoo! We had an appointment with the Renal Dr’s also and they are having me keep track of Carly’s urine output and food input, I hope we can figure out what is going on so that she won’t have to be hooked up at night she just hates it, me too!
Well here is a major turnaround, Kaylee has pneumonia. Yes I said Kaylee. She had been running a fever last week and coughing a lot she had even thrown up a couple of times, so when her temp got up to 102.7 I just had to take her in, so Saturday night off to urgent care we went, unfortunately it was closed so we had to go up to the hospital. The thoughts that were running through my mind were driving me crazy, I requested a blood count but the Dr. convinced me it would not ease my fears (I was scared it could be the “C” word) because her white count would be up anyway because she was sick and your white count does go up to fight what ever is making you sick. So they gave her an X-ray to see what that looked like. After the X-ray we were waiting in the room to make sure the film turned out and the tech. put her film up on the light to look at it and with me standing right behind her she looks at the X-ray and stated “Wow, that’s weird!“ I just about had a heart attack, I asked her what she saw and with out looking at me says that the Dr. will have to take a look at it and then talk to me. I went back in the room and was sure the Dr. was going to come in and tell me she had some kind of tumor or something! So when the Dr. came in to say it was pneumonia a flood of relief came over me. I felt terrible she had pneumonia, but elated it was nothing else! I feel so bad for poor Kaylee, she wants to run around and play all the time and having to take it easy and rest is really hard for her. She is on antibiotics and if she is not better by Wednesday I will take her in to see our regular Dr.
We are trying to pack as much fun into these last few weeks of summer. Chuck’ work is having their picnic down at Great America next Sunday, they are paying for everything! The weather has not been the best, I was hoping to make it to the pool a few more times to get more use out of the season passes we have but it has just been too cold. I even have free passes for Family Land up in the Dells that I probably won’t be able to use! we went to the State Fair with some good friends of ours last week and had a blast, see the photos in the album. We have been playing in the back yard a lot and taking bike rides as much as possible. Alicia will be back to school in just a few short weeks, she is pretty nervous about starting High School, but she sure enjoyed going out shopping for new clothes!
Hope you all enjoy the rest of your summer,
Love, Karen and Carly
Wednesday, July 28, 2004 9:28 PM CDT ALL OF CARLY’S SCANS CAME BACK CLEAN ! ! ! ! !
All except one that is, her bone marrow biopsy was put off AGAIN ! A couple weeks ago it was put off because of her cough and ear infection, or ear insection as Carly calls it, and today it was her potassium. She has been getting hydrated at night to help keep the levels down, and we have stopped it a couple of times to see if will stay down on its own, but it always goes up so I have to start back up again. Well they wanted me to hold the hydration again on Monday and Tuesday and check the level when we came in for the bone marrow today (Wednesday). Well it was back up again and because high potassium causes problems with the heart and being sedated also causes stress on the heart it would not be a good idea to go ahead with the bone marrow. Dr. Corden who was going to do the procedure said if it was above 5.5 he would not do it, take a wild guess what it came back as, that’s right 5.6 ! So after sitting there for 3 ½ hours we went home with another date. I have no problem with rescheduling it if there is any danger to Carly, but I am kind of upset that they knew there was a good chance that her potassium would go up and that it would affect the bone marrow biopsy, I just wish they could have put the two together and had me wait and hold the hydration until after the BMB was done. Carly has an appointment with the Renal (kidney) Dr.’s the end of August but because her potassium shot back up again Dr. Puccetti is going to try to move it up so we can figure out what is going on with her kidneys.
The hospital put on a picnic this past Sunday and it was a lot of fun. They had a ton of food, games for the kids, door prizes and entertainment. Carly won a American Girl doll but Kaylee will probably be playing with it more. We have been going on bike rides almost every night after supper and Carly who used to ride her three wheeler has finally graduated to the “big bike” a two wheeler with training wheels of course, she is doing great. Another big change around here is that all the girls have their own room now. Alicia moved down stairs, Kaylee moved into Alicia’s old room and Carly stayed put. Alicia just loves it, she has it decorated so nice. We had just painted her old room so it is in perfect shape for Kaylee. We got Kaylee all excited about the move hoping she would not have any issues about sleeping alone, and it really went pretty well. The first night she did talk about needing someone to sleep with her so I laid in there with her for awhile. The next night she wanted it again, I told her I would but that she was a big girl and needed to fall asleep on her own. The past two nights she has gone right to bed and fallen asleep on her own ! That ‘s my girl. As for Carly she could fall asleep in the middle of the highway so it was no problem there. We did lose a extra bedroom that was also my office but I just moved the desk and computer into the playroom. It really works out better because if I was on the computer or doing work at my desk I was way in the back of the house, now I’m right with them.
Well that is it for now, thanks for checking in and hope you all have a great rest of summer !!
Love you all, Karen and Carly
Monday, July 19, 2004 1:33 PM CDT I have some very sad news to share. Another dear sweet child has earned their angel wings. Treena, a beautiful 9 year old girl that was in the hospital the same time Carly was passed into the hands of our Lord this morning around 6:00am. Her mother Jill and I had become good friends up there. Treena relapsed with AML a little over a month ago. She went into the hospital to try a new Chemo, but complications arose and last Tuesday she developed a bleed on her brain. The next day she suffered a stroke and was paralyzed on her right side, Thursday it is believed she suffered another stroke and became completely unresponsive. It was decided the best thing for her was to be assisted by Hospice and go home. I went up to see her before she went home and it was the hardest thing I have ever done. Just two days earlier I was in talking and laughing with Treena, she gave me a hug that I will never forget. Please pray for Jill and the whole family during this painful time.
All of Carly’s tests went pretty well. We were not able to do the Bone Marrow Biopsy because she had a little bit of a cough and an ear infection, and it would be too dangerous to sedated her under those conditions, so it has been rescheduled for the 28th. Also she does seem to have some hearing loss but again because of the ear infection they were not able to get a accurate reading, that too has been rescheduled. Dr. Puccetti did call me with the results of the CAT Scan and it was NORMAL. Thank you Lord! Should hear about the others this week.
Our family went down to the Twin-O-Rama in Cassville this past Saturday and we had a lot of fun. We entered the least alike category, but did not win. We went to the parade and the girls got tons of candy then we went to the park and played around. We were going to go to this really nice beach in Bagley but the girls fell asleep so we just went home. I’m wanting to go to the big twin gathering in Twinsburg, Ohio, that would be a lot of fun.
So that is about it for now. hope everyone is enjoying their summer. Check back soon! New pictures coming.
Love Karen and Carly
Sunday, July 11, 2004 9:13 PM CDT Carly has only two more days of the Cis-Retonic acid medicine that is know to kill Neuroblastoma cells, then all we can do is pray that the cancer stays away! She will be going in for her scans this week and I am starting to get a little nervous. When I first got the scan dates I was kind of grumpy about them, every day for a week at the hospital, all day long! This is going to really put a damper on my plans, Carly is fine I would think, But then I started thinking how important they really are, so off we go! We are going to check her labs tomorrow too, hopefully her potassium is down and stays down so we can get that darn PICC line out of her and she can have a bath and go swimming like a normal kid. I'm so happy we have the line now for all her scans since she needs an IV for them but it is such a pain to take care of with how she just hates to have the bandage changed. So lets hope it is down tomorrow and they say to still hold the fluids and check again later in the week and if all is good pull the line Friday.
One of the tests Carly will get is an Audiogram, that will check her hearing. She has been such a stinker lately, she is either stone deaf or very good a ignoring people. It is kind of funny sometimes, like today we were having lunch on the deck and Carly brought out Chucks ice tea, when he came out to eat he asked Carly where it was she just looked at him, he asked again, she turned around and asked me “what” again Chuck asked her where it was and she just looked away and ate a chip, Chuck just threw his hands in the air and I laughed, it is kind of like 'earth to Carly', sometimes she is just in her own little world. I can stand right in front of her and tell her something and she will just walk away. She has been very uncooperative during the hearing tests so I hope she will do better this time so we can tell if she does have some loss.
The end of last week Carly was getting a pretty bad cough and more than usual runny nose she was also complaining of her ear hurting, I called the UW and Dr. De Santes said that Carly was ready to see her regular pediatrician, I was so happy to hear that, more normal stuff. So I called Dr. Fields and he got her in right away, he has been the girls Dr. since they were born and mine since I was about 14. The last time I took Carly in to see him we discovered the tumor. So I made it clear to him that he was not to find any cancer this time. He is so wonderful, he listened to her and checked her ears then even took a oxygen reading, it read 87, my heart skipped a beat, he sent her down to get a chest x-ray, all the time I’m thinking maybe she is getting phenomena again. But the x-ray looked great and a recheck of her o2 came back at 97 he thought it was low the first time because she was crying. She did have a pretty bad ear infection and he gave her med's for it. He was so sure to check everything with her it really made me feel good.
We have been having a great summer. Lately we have gone to a couple of beaches with my sister and some other friends, We went to little A-Merick-A last week, I took Alicia to Rhythm and Booms, We still go to a twin playgroup every monday that is so much fun and just riding bikes and playing around the house. Work is going good and Alicia has been such a huge help watching the girls.
So thank you everyone for checking in again, please keep Carly in your prayers this week.
Wednesday, June 30, 2004 9:06 PM CDT OK! OK! So it’s been awhile since I last updated. To tell you the truth, I go on Carly’s page every day to see who has been visiting and lately there have been few and far between guest book entries. So I guess I just thought people were not checking up on her as much anymore. Well was I wrong! I have heard from quite a few people that they still love to check on her but just do not have the time to sign. I should have understood that because I visit at least 10 different kids on a regular basis and can’t always leave a message either, I would be on the computer all day if I did. So PLEASE if you can leave a little hello it really means a lot but if you can’t, PLEASE don’t stop checking I will try to up date at least once a week.
THANK YOU SO MUCH FOR CARING FOR CARLY!!!!!
Now where did I leave off? Carly’s potassium is still a problem. She was not admitted like I was afraid of, they just started her back on hydration. Her PICC line has been becoming such a problem, like I said one of the stitches had come out, and just last week the other stitch came out. So the only thing holding this tube in her arm and vein was the band-aid to cover it! It was so hard to change the bandage because she absolutely hates to have it done and kicks and screams the whole time I was so scared it would fall out with all her moving around, It takes all three of us to hold her down, it is not hurting her, she is just scared it will. She has always been very protective of her tubies, she was the same way with her Hickman. I mean just imagine being four and having a tube coming out of your chest or arm! She had her clinic visit yesterday and they had me stop hydration Sunday and Monday to see what her potassium came back as, well it was creeping back up again! So back to the hydrating. I could not go any longer with her PICC line like it was, it just had to be fixed, so today we went in and they sedated her and put in two more stitches. I just hate seeing her being put to sleep, but now her line is more secure. One good thing about having to keep the PICC line in is that she will be having all her scans the week of July 12th and three of them need an IV to give med’s so maybe it was lucky that her potassium was high to spare her from all those pokes. Seeing she has a line, she will be able to get all her scans done in one week the last set of scans got spread out so much because of all the trouble getting an IV in. Carly will be having a Bone Scan, MIBG Scan, CAT Scan, Bone Marrow Biopsy and a hearing test, whew! That will be a fun week, NOT! So keep her in your prayers that week and as always, PRAY FOR CLEAN SCANS! Next set of scans will be one year post transplant!!!!!! WOW!!!
I did go back to work at UBC, only part time and just for the last two weeks. I was helping them out with their inventory, it was so fun and very therapeutic to be there and get my mind on something else. Anita said they were trying to put together a job helping Dan with inventory control, possibly doing Cycle Counts which are kind of like inventory adjustments, at least I got my foot in the door and if any thing comes up I will be there. I am so glad to be back there, it was just like old times walking in each day and seeing all those people I used to work with. There were a lot of new faces too, and the building is so different, I could have cried when I looked in my old office and saw it practically trashed and just used as kind of a storage room. Oh well, out with the old and in with the new, right!
We have been having a great summer so far! Have made it to the pool a couple of times, the zoo, where we are going tomorrow too, lots of parks and just having a blast in the back yard. Carly is really getting back to being a normal 4 year old, a little slow at some things but always giving it her all! We tried going up to Devils Lake last Sunday with my sister and her family for a day of fun in the sun, picnicking, hiking, swimming but just after we ate it started raining, imagine that! Hopefully we can try again this summer. Well I hope you all are having a great summer too, give your kids a hug and have a safe 4th of July!
Love, Karen and Carly
Wednesday, June 9, 2004 7:50 PM CDT Ever have one of those days where you feel like you take one step forward and two steps back? Well today was my day. This morning I had to take Carly in for labs to check her potassium. They had me stop hydrating her for the last two nights to see how she does. Also her PICC line was not looking very good and I was afraid of an infection plus a stitch had come out so I just wanted to have someone take a look at it. I left before the results came back because last week I had gone back to Fish, now called UBC (where I used to work) to see if they had any openings, we are just not able to keep up with everything anymore, and we have begged and borrowed from everyone we know. So I first went to my old boss, Erv, who now works over in Middleton to see if he could help, he suggested I fill out an application because they were very busy and might be hiring. I took an application but thought it would be closer for me to work in Madison, where I used to work with Erv. So I went over there and talked to Anita, my old, old boss. We were both very disappointed because she said they were so busy too and she was having trouble finding people to work and just one week earlier had hired a temp. She did think of calling me but thought it was too soon. She said she would keep me in mind if anything came up. The very next day she called and asked if I would be interested in helping out with their inventory, it would only be part time and temporary but at least I would get my foot in the door and if anything came up I would be there. I was so happy, if I had to go back to work, there is no other place I would rather go. I just loved working there and was so sad when I had to leave after the girls were born. So I went in this afternoon and filled out an application and she showed me around, it was so different then when I worked there. It was fun seeing all the people I used to work with too. Everyone was so nice and everyone who knew me asked about Carly. I worked there for 12 years and I want nothing more than to work there for 12, 15 or 20 more. Now the two steps back. When I got home Sharon from the hospital called and said Carly's potassium was back up to 5.5, not too high but it was like 4.3 last week and now it is going back up, again. She said to still hold the hydration and go in for labs on Fri. well Fri. is going to be my first day at work. She said it would be ok to come in on Thursday night. I am just so worried that it is going to be even higher and they are going to admit her, then what am I suppose to do about work. I am doing everything I can to try to control her potassium, giving her as much as she can handle to drink, no chocolate milk or yogurt I just don't know what else to do. I don't want to blow this chance getting back to work at UBC and Anita said she would work around my schedule, but come on, my first day back! So let’s all keep our fingers crossed that her potassium will hold steady and start to go back down.
Love you all, Karen and Carly
Tuesday, June 1, 2004 12:12 AM CDT We just got back from Carly’s clinic visit and everything is looking good. Her potassium was still a little high and panic set in thinking they were going to admit her, but we are just going to do labs for the next couple of days to keep an eye on it, and continue to hydrate her at night. Also I thought we were on the last round of the Cis-Retonic acid, but found out we have two more. This is the drug that sends her into extremely intense mood swings, never mind that she has enough on her own! Oh well, we will just have to make do; I know it is harder on her than us. I was a little nervous about her stopping the Cis-Retonic anyway, because it is the last of the cancer fighting drugs there is for her, it was kind of like a safety net. But I know that the Lord has healed her so enough is enough, how much more could be done to her anyway?! We have to go back to the hospital in about an hour to get the injection for the MIBG scans she will be having this week, then I think we are done for 6 weeks, then all the scans again.
We are all still coming off our high from the trip, I was watching a cruise special on the travel channel and boy do I ever want to go on another one!! It really is the best vacation; I wish we had spent the whole week on the ship. Our city’s pool is opening up this weekend; we will be spending a lot of time there this summer. Carly will have to have her PICC line in for probably 6 to 8 more weeks, but it is easier to cover than her Hickman so she can still go swimming. I have some coupons for some of the gym’s in our area so I will be taking the girls there soon too. Alicia is out of school next Tuesday, can you here me say “YAHOO!” We tried to go up camping for the day with Tracie this last weekend but all the rain made it impossible. We are going to have a great summer this year, hope you all do too.
Love Karen and Carly
Tuesday, May 18, 2004 6:20 PM CDT We are home, well kind of. Carly and I are up at the hospital right now, we came in yesterday. Carly has pnemonia. The last night of the cruise she developed a fever. Then when we got home she came down with a cough. It got pretty bad by Saturday so I called the doctors and they said to take her in for an x-ray. We went to urgent care and the doctor said she didn't even need an xray. She could tell just by looking at her that she was sick. She was put on Zithromax and told to call if she wasn't better in a few days. Monday we were to go in for the injection for the MIBG scan that she was going to have but because her cough was worse I called and asked for an x-ray while we were up there. It showed a lot of junk in her lungs and she was really rattly. She was really sick so they wanted to admit her right away.
They had to put in an iv and that went pretty well. They took cultures of her blood and urine and found out that her potassium was too high again. They ran another ekg. They found a few "blips" on it but haven't said what they are going to do yet. She went down for a cat scan of her chest earlier today but we havent heard anything about that yet either.
They are going to have the kidney doctors come and take a look at her because like before, her kidneys should be able to control her potassium. Either they are still healing from all the chemo or they may have been damaged by it.
She is really wiped out and is sleeping most of the time. Kaylee is over at Grandma and Grandpa Wornsons and is having the time of her life. Just another vacation for her to be with them. Alicia is stuck at her best friend's house, tough life for her too. Chuck is holding down the fort and is back to work.
Dr. Matloob said that a reasonable time to expect to get home isn't before Thursday, so here we sit.
Now for the fun news, our vacation was awesome. The limo picked us up at 3:45 a.m. Fun ride to the airport. We got to our hotel with no problem except that the hotel lost one of our bags. Thankfully it wasn't the one with our swimming suits in it. The first night we just stayed at the hotel and swam.
Friday we went to the Animal Kingdom, it was just like going to Africa. We tried to see the it's a Bugs Life show, first but Kaylee got scared because it was in 3-D so she freaked. Carly freaked out because Kaylee was freaking out. Alicia loved it. We saw the Lion King Show, WOW, the Safari, COOL and the Boat Ride, FUN!!! We finished up the day with dinner at the Rainforest Cafe where Kaylee freaked out again because of the thunder and lightening.
The girls just loved going up and seeing the charters, I was not sure how they would react, but they loved it. Being on a wish trip we were able to get right up front either for the charcters or a ride or show and that was nice because there was always such a long line.
Saturday was the girls' birthday and we had reservations at Chef Mickey's for breakfast. We had to take a bus from the hotel to the Magic Kingdom and then catch the Tram to the Contemporary Resort where the restaurant is. The breakfast was a buffet, we just got our food and sat down and Carly got sick all over herself. We had no spare clothes for her and we were very far from our hotel. I took her down to the bathroom to try and clean her up. I finally had to take her clothes off because there was no way she could have worn them. I took her back upstairs, Alicia was there waiting for me. I told her to stay with Carly and I would go to the gift shop to try and find her something to wear. I came back empty handed, because the only thing I could fine was going to be over $50 and we were on a pretty tight budget. I started crying because poor Carly was standing in the middle of the restaurant in nothing but her underwear. It was her birthday and I thought the whole day was ruined. Then the manager of the restaurant came over and I told her the whole story. She went over to the gift shop and came back with the outfit free of charge. That is how everyone was all throughout our trip. They could not do enough for us. We got Carly dressed and finished breakfast. We then went to the Magic Kingdom and had a blast. We rode the Tea Cups and Dumbo, went on a magic carpet ride and whole a lot more. The main thing I wanted to do at the Magic Kingdom was take the girls to see Playhouse Disney, but when we were ready to go we realized we had just missed the last showing. So we decided to try and catch it the next day. We went back to the hotel and planned to hang out and swim; but decided to go over to Epcot to see the fireworks. Unfortunately again, we had just missed the show; so we rode the ride in the big ball.
Sunday, we got up and decided not to go back because there wouldn't have been enough time, instead we had a great time doing things around the hotel. We rented a four-person bike and rode around the grounds, then rented a boat and went up and down the river. It was very fun.
We packed up and went off to the ship...AND WHAT A SHIP IT WAS!!! There was so much to do on board. The girls loved the Oceanears Club. We could just drop them off and then go off and do things on our own. Each night we had dinner at a different restaurant. But our wait staff would be the same and so were the people at our table. They were a very nice family from Canada, they had an almost 4 year old daughter who quickly became Kaylee's best friend.
Our first stop was in Nassau, it was a real tourist trap, but a lot of fun. We shopped a little and Alicia got her hair braided then we went down to the beach and layed out and swam. Me and Alicia were in the water when a school of fish swam by. We never moved so fast. Chuck said they were Barracuda and if I had known that, I would have moved even faster. We went back to the ship and had a declicious dinner and then went to a show. There was a different show each night. Each one better than the last.
On Tuesday, we went to Disney's own island, Castaway Cay. It was beautiful. We swam all day and had a wonderful barbeque right there and just relaxed. Unfortunately, Alicia got heat rash the day before in Nassau and it hurt her to be in the sun. So she spent most of the day back on the ship. Being a teenager though, I think she did have fun ordering room service and laying around watching TV. Also she was able to go to the internet cafe and talk to all her friends back home.
Nikki was our Make-A-Wish hostess on board and she did everything she could to make the cruise memorable. One time we came back to our state room and there were stuffed-Mickeys waiting for Carly. Another time there was a plate of cookies, yet another time some pre-paid cards for the arcade. Even the last night she had reserved seats for us for the last show. But Carly and I missed that one because that is when she (Carly) first started getting sick.
The last day was just at sea and we spent the day at the pool, eating and even drinking a little (Chuck and I picked up some yummy cranberry vodka in Nassau).
Thursday came before we knew it and they had us up and off the ship by eight in the morning. It was a very long day getting home, but we made it there around seven in the evening. I will get pictures on here as soon as I can, but they're on the computer at home.
So now we just have to get Carly all better and get her home. We're looking forward to a fantastic summer.
Love you all,
Karen & Carly
UPDATE - Sunday May 23rd
Carly and I came home from the hospital on Friday night. We were told that she would need to come in for labs on Sunday because they wanted to keep a close eye on her, they said if they (her labs) did not look good she would be admitted. To try and keep her from being admitted they suggested to give her a lot of fluid, at least 40 oz a day, that is a lot for her but I did it, well it was not enough. This morning we came in and sure enough her potassium was back up there, 6.4 Dr. De Santes said they start to panic when it gets up to 7 so good thing we came in.
They are not sure what is going on with her kidneys as to why they are not filtering out the potassium so they are going to have the renil (kidney) Dr's come and take a look at her tomorrow. Another possibility could be that they were damaged from the radiation Dr. DeSantes said her labs started looking funny starting in March and if she finished raidiation in December that would make since because raidiation causes a delayed reaction to the kidneys. They also had a heck of a time putting in an IV again and they are going to put in a pick line tomorow, it is just like a IV but can be kept in longer, I will take care of it at home like her hickman. So that will mean she will not have to have so many pokes while they are trying to figure out all these problems. I am still kind of shocked that she could be having all these dangerous problems almost 7 months after transplant, but it just goes to show how fragile she still is. Please send some prayers her way.
Love, Karen and Carly
Friday, April 30, 2004 5:31 PM CDT The hardest part of entering these journals is just getting started. I meant to update sooner but we have had a pretty busy week.
First and foremost, Carly’s scans came back NED (no evidence of disease) Thank you Lord. We went in on Monday morning intending to spend just the day there because they were doing both the Bone and CAT scan. We went to sedation first to get the IV in, because of all the trouble they have been having with her small veins and just her fussing. But it went a lot better this time with the extra sedation. The scans went just fine; she was a trooper just like always. Just as we were getting ready to leave, around 4:30 Sharon came in with her blood work results that they also got earlier, and her potassium was too high. She was really stumped as to why because all her other labs were ok. She just kind of sat there for a while then went to talk to Dr. Puccetti. When she came back I thought she was just going to prescribe some medicine. Boy was I shocked when she said she thought it best for Carly to be admitted so they could do a work up on her. Seems high potassium could do some damage to the heart so they wanted to run an EKG and just monitor her. So back down to F4/4 we went. It was kind of fun though seeing all the nurses again, but mostly for them to see Carly. She was a hit! To have them see her like she really is and not the up and down, moody, fed up with everything child they knew just a few short months ago. The EKG came back fine, but they also wanted a urine sample because they though even though her potassium was high, her kidneys should take care of it. So Carly knowing we needed it decided to be stubborn and refuse to go. We could not go home until she did. It took till almost 7:00 Tuesday evening before we finally got her to go, boy that kid can hold it. They had a dietician come in and go over a low potassium diet that she would need to follow, on the list of things she should stay away from the top item was milk and any dairy products, there was the answer to why her potassium was high. Carly has been practically living on chocolate milk and pudding and yogurt. So we need to cut back on that. They did end up giving her a medicine to help lower the potassium but it tastes awful and she refuses to take it. I took her in for labs yesterday and called for the results just a minute ago and her potassium is better so they said it is ok if she stops the medicine. She will have one more scan when we come back from Disney, than we will be done for another 3 months. It is going to be an extremely busy week with getting ready for our trip, but I will rest up when we get down there!! Have a great weekend everyone, and tell your kids how much you love them.
Love Karen and Carly
Some more brave young survivors!
www.caringbridge.org/wi/justinerickson
www.caringbridge.org/wi/parkert
www.caringbridge.org/wi/ashleemmack
www.caringbridge.org/kaitlyn
www.caringbridge.org/tx/alexiaflory
www.caringbridge.org/pa/michaelaann
www.caringbridge.org/mn/laplafcan
Here are two pages that Carly is on and other kids too.
www.warriors.beebo.info/
www.neuroblastomacancer.org/scripts/content.php?tenokate=wakk,php&args=wall,wall
Sunday, April 25, 2004 8:29 PM CDT Tomorrow is not going to be a fun day. We will be up at the hospital all day. They are going to have Carly go to the sedation clinic to get a higher dose of sedation and try once again to get an IV in her. She will at least have both scans done so we won’t have to do it twice.
I want to thank everyone who made it to the Make-a-wish benefit the other night; it was a lot of fun. I had many people tell me it was better than they expected. A lot of people I know won prizes and I’m so happy for you, none more so than my friend Sue, she won a 2,400.00 wine cooler from Sub Zero, then won a Bachman spa rental for the weekend. I know where I will be when it gets delivered. I’ll bring the first bottle of wine. God knows I need it. She also won a Carlos O’kelly gift certificate that she so kindly gave to Chuck and I, Thank you Sue!
Kim and Jason are coming over on Tuesday night to go over all the details of our Make-a-Wish trip, we are so excited. Alicia has been counting down the days and trying to make Carly and Kaylee understand. They probably think we are never going to get there because we have been talking about it for 4 months. Whenever they see anything Disney they yell, “We’re going there” they call it Disneyland Fun because we have a video called that.
Let’s all keep our fingers crossed everything goes smoothly tomorrow.
Love you all, Karen and Carly
Some more brave young survivors!
www.caringbridge.org/wi/justinerickson
www.caringbridge.org/wi/parkert
www.caringbridge.org/wi/ashleemmack
www.caringbridge.org/kaitlyn
www.caringbridge.org/tx/alexiaflory
www.caringbridge.org/pa/michaelaann
www.caringbridge.org/mn/laplafcan
Here are two pages that Carly is on and other kids too.
www.warriors.beebo.info/
www.neuroblastomacancer.org/scripts/content.php?tenokate=wakk,php&args=wall,wall
Thursday April 22, 2004 Well I had an absolutely terrible day; Carly and me were back up at the hospital today to get her CAT Scan. Well this scan also requires an IV to inject contrast. I was dreading it knowing the trouble we had on Monday not being able to get one in after trying two times for her Bone Scan. So today they gave her some medicine to help keep her calm, ya right! They tried her hand, arm and even her foot but no luck. It is not just a little poke either, they stick it in then move it around back and forth to try to get it in the vein, all the time she is screaming “please stop, ouch, your hurting me!” and I’m there holding her down while they are doing this to her! I HATE THIS!!!!!! So we are going to have to go back on Monday and they are going to have her go to the sedation clinic and give her a stronger sedation and give it another try, I can hardly wait! At least they were able to schedule the Bone and CAT Scan both on Monday so she will only have to get the IV in once, until they get the medicine for the MIBG then she will go back for that scan. After these are all done she won’t have scans for another 3 months, but I’m sure it will fly by and we will be back before we know it. Well I’m off to get ready for the big benefit tonight at The Great Dane, Hope to see a lot of you there!!
Love, Karen and Carly
Some more brave young survivors!
www.caringbridge.org/wi/justinerickson
www.caringbridge.org/wi/parkert
www.caringbridge.org/wi/ashleemmack
www.caringbridge.org/kaitlyn
www.caringbridge.org/tx/alexiaflory
www.caringbridge.org/pa/michaelaann
www.caringbridge.org/mn/laplafcan
Here are two pages that Carly is on and other kids too.
www.warriors.beebo.info/
www.neuroblastomacancer.org/scripts/content.php?tenokate=wakk,php&args=wall,wall
Wednesday April 21, 2004 Good news: Carly had her clinic visit today and she is still going great! Dr. De Santes said her immune system is coming along great and we can stop all the restrictions with food and best of all she won’t need a mask when she goes anywhere. We have been loving it that it is getting nicer outside so we can go out and play but I have been really wanting to be able to take her to places like McDonalds, or we even have gift certificates for Chuck-E-Cheeses that we have had since Christmas, So now we can. I have also been a little concerned with Carly’s growth. Her sister, Kaylee is about 3 inches taller than her and I asked about any medicine that they might give her in the future to help her “catch up to her twin” We went over the growth charts and Carly is pretty much in the average range for her age, the chemo does stunt the growth a little but the Dr. said when Carly is all done with all treatments she will have a growth spurt. Me being a tall person and hating it all my life, if Carly does end up being a little short I hope it will not upset her too much.
Bad news: Carly is right in the middle of all her scans and tests, but one had to be put off because the medicine needed for it is no where to be found in the country. Actually that is kind of good news because if they could do the scan it would mean another poke for her. Now that Carly does not have her line anymore all blood tests and IV meds have to be done with a poke. So we were up at the hospital on Monday for her Bone Scan and they tried twice to get an IV started, popped the vein each time. It was the first time since getting her line out that she had to get a poke so she was very upset, scared and crying this makes the veins constrict. They had to reschedule it for Monday. We went for clinic today and she was so scared she was going to get poked again, poor thing. She does need blood work because she is to start the “oh so terrible, never a dull moment, sleepless nights, emotional roller coaster” drug, thank God there are only 2 more times she needs to be on it. (Even though it is for 2 weeks at a time) so they will have to do it tomorrow when she goes in for her CAT Scan where she needs another IV. Never, ever a dull moment in the world of Cancer.
Everyday news: I hope you all enjoy reading Carly’s Corner as much as I enjoy doing it. About a month ago I started to get really depressed because I was visiting a lot of other kids pages that were stricken with cancer too. I was “hunting down” all the kids I could find that had Neuroblastoma because I knew what they were going through and being a twin mom and having that support group I though it would be good to have the support of other cancer moms. It turned out to be a double-edged sword. It seemed like every child I came across with Neuroblastoma was just diagnosed and going through treatment, had relapsed, or died. Out of the 100’s I must have visited I only found 2 that have been NED for any length of time. All I could think about was when Carly’s cancer would come back. Thanks to all my family and friends, who are my true support, I got some help for my anxiety and realized what I have been telling you guy’s all along, that you have to live each day to the fullest, who cares what tomorrow brings life each day like it was your last. I’m not going to stress out my life worrying about what might happen any more! I truly believe that Carly will be one of the success stories. I do check up on a few of the children because I love them, and I want their moms and dads to know that I am praying for them, but I am not going to get obsessed with it all again. If any of you are interested in offering your support to these families you can find their addresses below. Thank you.
All Our Love, Karen and Carly
GOD'S PROMISE:
God didn't promise days without pain, laughter without sorrow or sun without rain.
But God did promise strength for the day, comfort for the tears, and a light for the way.
And for all who believe in his kingdom above, he answers their faith with everlasting love.
I HAVE HEARD CHILDHOOD CANCER IS RARE...
NOT WHEN YOU LIVE ON THE CANCER WARD OF THE HOSPITAL.
PLEASE REMEMBER THERE ARE A LOT OF US IN THIS FIGHT
PLEASE PRAY FOR A CURE
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CARLY'S JOURNEY
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We were getting ready for the best summer ever; we had just traded in our pop-up camper for a 27’ travel trailer, every weekend that summer was to be spent in the great out doors. I remember the day like it was yesterday, my sister and I were in our camper, the twins, Carly and Kaylee, were jumping around on the bed to the CD “Down on Grandpa’s farm.” I told Tracie to feel Carly’s side, it seemed hard. Carly had always had trouble having a BM and I thought she was just backed up. We had a Dr. appt the next day to have it checked out. After Dr. Fields had taken a look at her, he was not sure what it was so he wanted her to have a CAT scan done, go up to the University Hospital we were told, they would be waiting for you. We got up there and everything was a blur, there were so many Dr.’s and nurses coming around and they had so many questions. They started an IV in Carly’s arm, she was so good for it, did not even cry. They took lots of blood then we went down for the scan. It was around 11:00 pm that night that I got the worst news of my life. Carly had cancer. So our journey began. The next day she was in surgery to have a double lumen Hickman placed in her chest so they could draw blood easier and as I was to come to know, to administer the chemo. They also did a biopsy of the tumor to determine what kind of cancer it was. Many tests needed to be done to determine what stage she was in so they would know how to treat her best. She had more blood tests, scans and a bone marrow biopsy. I remember going down with her when she had the bone scan, the images were displayed on a computer screen. There I could see this little tiny skeleton appear and plain as day I could see that huge tumor that was in my baby’s tummy, it was almost like it was glowing. I looked at it a little longer and noticed some other parts on the scan were glowing too. Oh my God! It was in the bones. My mind flashed back to when my mother was battling cancer and how hers went to the bones and the awful pain she went through. I held Carly so close, so hard, how could this be happening. The doctors came up and told us the bone scan was clean and what I saw was just the cartilage, my heart started to beat again. That is how it was for the next couple of days, we would get some good news then some bad news, it was hell. When all the testing was completed we had a meeting with Dr. Puccetti to go over all the results and discuss the treatment plan. We were told it was Neuroblastoma Stage IV, it doesn’t get any worse than that. She would need the most aggressive treatment available, we were told that even though it was not in the bones it was in her bone marrow, and that is what makes it Stage IV. Neuroblastoma is a very rare childhood cancer that affects about 600 kids a year in the US, the average age at diagnosis is 2 ½, and Carly was just about to turn 3. Dr. Puccetti went over everything with us, we were told Carly would need a Stem Cell Transplant, but her prognosis was not very good, Chance of survival was only 35o make it to transplant, and 65o make it two years. I was numb, this can’t be my child they were talking about, I just sat there and cried for I don’t know how long. Carly would need to go through 6 rounds of chemo that lasted from 3 to 4 days, one round every three weeks. She would have her own Stem Cells harvested after the second chemo; they would be frozen until needed. Surgery to remove the tumor after the fifth chemo, a final round of chemo then the high dose consolidation chemo to completely destroy all her bone marrow including any remaining cancer cells. Her entire immune system would be destroyed and then her harvested cells transplanted back in to her in hopes they would start to grow new healthy cells. Twelve radiation treatments would follow and a new experimental drug therapy to last six months. How was my little baby supposed to go through all that? They started chemo on Carly the following Tuesday. She began to lose her hair soon after, that was one of the hardest things, for any of you who knew Carly can remember that beautiful head of curls she had. It ended up being such a mess with it falling out I finally ended up cutting it all off, I have it saved in a bag. Carly handled the chemo treatments pretty well, she did not get as sick as I was told she might. She threw up maybe once or twice during the six chemo’s, however she would be very nauseated and tired during the chemo’s we were about two months into treatment before our time in the hospital was less than we spent at home. Between each treatment Carly would spike a fever, because the chemo kills good immune fighting cells along with the bad cancer cells so a little bug that we would not even know we had was very dangerous for her. We would have to go back up to the hospital for IV antibiotics, that was always a four to five day stay. By the time Carly was ready for surgery her tumor had shrunk a lot, Dr. Puccetti could not even feel it anymore that was a very good thing, the chemo was working. Surgery was another heart wrenching day. Carly had one main tumor but also about six to eight smaller ones that were wrapped around arteries and things; it was to be a very delicate operation. Her surgery took 5 ½ hours and was a complete recession of the tumors!! After surgery she had her last induction chemo then it was on to the transplant. The transplant itself only takes minutes but the hospital stay for the chemo she would first go through and the time it would take to recover enough to go home was any where from six to eight weeks. She needed many tests done to prepare her for it, including more scans, kidney and hearing tests because the chemo is very hard on them and even developmental tests, because this extensive treatment usually puts kids behind. Going into the hospital for the transplant was like moving into a new home, I had become so accustom to hospital living that I could pack up for a stay in 10 minutes. This time though, knowing how long we would be staying I really tried to make her room extra special. I bought a new lamp, curtains, Dora the explorer sheets, hung Christmas lights and posters up and brought her favorite toys and lots and lots of Barney movies. Too bad she was not able to enjoy any of it. Three days in to her transplant chemo she started to develop blood pressure problems. She had not even gotten her cells back yet and things were really going bad. They decided to transfer her down to the PICU because they were able to keep a better eye on her. One terrible side effect of the chemo was a condition called mucositis that is where the lining of her whole digestive track from her mouth to her butt would get these very painful open sores, she threw-up blood for 3 days straight. She was put on morphine to control her pain. She also started to have some breathing issues, this was a complication we were told might happen, they put Carly on a Bi-Pap machine. It is kind of like a noninvasive ventilator, it was a mask that covered her nose and mouth and forced puffs of air into her lungs. This seemed to help her, for a little while at least. After Carly had finished the chemo she was given a couple days of rest. When it was time to give Carly back her cells she slept through the whole thing but it was very emotional for me, this was new life being pumped into my child, and the chance of them not engrafting was always there, it would be a couple of weeks before we would know if it had worked. Carly’s breathing continued to get worse along with every other problem we were told could happen, but probably wont, she was having problems with her liver, breathing, blood pressure, oxygen levels and most dangerous of all she had no immune system to protect her, she was getting fevers but we could not figure out why, none of this was good. The ICU Dr. came in and woke me up one morning and said that Carly had really gone down hill over the night and they needed to put her on a ventilator. To see Carly lying there unable to move with that tube down her throat was so painful. Dr. De Santes, the head transplant Doctor had just read in a journal of medicine that kids in this kind of respiratory distress might do better if they were hooked up to a dialysis machine to help get more fluid out of them, and since Carly’s kidneys weren’t working very well at doing this, he thought it would be a good idea. Carly was the first person to have this new treatment tried on at the UW Hospital. She needed another Gambro Catheter inserted in her groin to do it. It seemed to do the trick; Carly improved enough to be removed from the ventilator after six agonizing days. Carly continued to improve and we were transferred back to the regular unit, with thoughts of going home in a week or two. But the very next day Carly’s breathing started to pick up again so they transferred her back down to the PICU. They continued to keep Carly on the Bi-Pap machine but just like before it was not enough. It was Halloween Eve, and my other daughter Alicia was up at the hospital with me, but I could tell things were really going bad with Carly so I ran Alicia home. When I got back Carly was even worse. The Dr. came in and informed me that she needed to go back on the ventilator. I could not stand to watch them doing it so I was outside the room with one of the resident doctors, there were nurses and Dr.’s running in and out. I could see the Dr. trying to put the tube in and could tell he was having trouble. A nurse came out and told someone to call the anesthesiologist to come help, more running around. It should have been done by now I thought, what was going on?! I could see her monitor and saw that the oxygen level was dropping, panic was setting in. Again someone came running out and had them call for anesthesia stat, I had heard pages over the hospital intercom many times before but when it came this time it felt like a knife going through my heart knowing it was for my child. It seemed like hours until I saw the anesthesiologist come running to her room. Finally they were able to get the ventilator in, but it was at the highest setting, 100xygen, and all the pressure her little lungs could take. I went in there just numb with uncontrollable sadness at the site of my little girl in such danger. After everything settled down and they got her stable the Dr. came to talk to me. He informed me that Carly probably had Fibrosis because of the high pressures it took to get her lungs to open up. Fibrosis is when the lungs have been damaged so bad that they become hard and unable to expand, there is no treatment for this and I was told Carly probably would not make it through the night. I just sat by her bed and wouldn’t let go of her hand. Every time the monitor would beep because her oxygen level was dropping was just horrific, time and time again it would happen and I would think this is it, I’m going to lose my baby now. Come on Carly I would say, you can do it, please baby try. They put Carly back on dialysis, and so many med’s I can’t even begin to list. She had so many lines going into her, 4 lines in each of the two ports on her Hickman, an IV in her arm, hand and foot, along with the one for the dialysis. I was desperate; I could not or would not accept the fact Carly might not make it. I demanded to have a lung Dr. come and take a look at her, I had looked up some information on Fibrosis and it just did not seem possible for her to have it, Fibrosis takes a while to happen and she had only been sick for just over a week. It was absolutely the worst day of my life; I have never been so scared. Elation filled the room when the Lung Dr. came back and said he had looked over her x-rays and scans and did not think it was fibrosis either, he thought she just was having fluid build up and that it could possibly be ARDS (acute respiratory distress syndrome) So we all just kind of sat tight for the next few days to see how she did. After a lot of praying and some fantastic Dr’s her ventilator pressures came down a little each day until Carly was able to come off the ventilator, she was on it this time for 12 excruciating days. I was petrified at the though of her going down hill again, I knew she would not make it if she were to have any more problems with her lungs, they were just too fragile. But the risk of being on a ventilator if you really don’t need it is too high. Four days later we were back down to the regular unit and Carly really began to improve. Carly needed a lot of therapy to help get her strength back, she could not stand on her own and all her muscles were badly deteriorated so they started her on some extensive physical therapy, we would go down to the PT room twice a day and do everything from sitting on a swing to improve her balance to drawing on and wiping off things on a mirror, it was so hard to see her struggle so much. Carly hated every minute of it, it hurt her to move around, and she had been in bed for the last 2 months. But she stuck it out and was doing well enough that just over a week later we were able to go home, just in time for thanksgiving, I sure had a lot to be thankful for this year. She started radiation about 2 weeks later and did fantastic with it, most kids need to be sedated during this and also for the scans, but Carly has never had to. It took quite a while for things to return to somewhat normal at home, but to tell you the truth I don’t think things will never be normal again, but we are making the best of it. Until Carly’s imminune system comes back she will need to wear a mask if she goes anywhere, she was on a lot of med’s when she came home and still has a very strict diet she has to follow. When we first left the hospital we had to go back for clinic every week, then it was every other week. We are now going only once a month. She is doing her last treatment to fight the cancer, it is a drug she takes for two weeks than is off for two weeks for a 6-month period. She is having some very bad side effects from it including extreme sadness and mood swings, this drug has caused suicide in people, and it breaks my heart to see Carly go through these feelings and not understand why. I’ve just recently had to put her on an anti-anxiety drug to try to calm her down because she has been having hallucinations at night and gets so emotional over things that it is not good for her blood pressure, which is still a problem. Every three months for this first year Carly will have scans and a bone marrow biopsy to make sure she is still cancer free, we had our first ones in January and everything was clear, it is an excruciating time for me, waiting for the results, but so far so good! Carly already is set to go through them all again in the next couple of weeks. She also is getting her Hickman out soon so then I will be able to give her a long overdue bath, she was not able to be immersed in water with the Hickman, that meant no swimming either, and the way my girls loved swimming that was a very hard obstacle to overcome, so we are going up to the Great Wolf Lodge in the Dells next month to celebrate. I will worry, probably for the rest of my life, but I can’t let it take over. We are getting on with our lives and enjoying every minute of it. The girls will be turning 4 this May and we are going to be at the happiest place on earth, you guessed it, Disney World!! Carly’s Make-A-Wish trip is in the final stages of planning and we are so excited. We are doing the Land and Sea adventure so we will be on the cruise ship too. I have been given a second chance with her, and I thank the Lord everyday for that.
HUG YOUR KIDS EVERY DAY!!
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This morning, I am going to step over the dirty laundry, pick you up and take you to the park to play. When we get home, I'll leave the dishes in the sink and let you show me how to put that puzzle of yours together.
This afternoon, I will unplug the telephone and turn the computer off, and I'll sit with you in the backyard and blow bubbles with you for as long as you want to. If the ice cream truck comes by, we will run outside to catch it and buy a treat and I'll just smile at you when you rub some of it on your face and in your hair. I won't worry what you are going to be when you grow up, or second-guess all the decisions I have made where you are concerned.
This evening, I will hold you in my lap and tell you a story about how you were born and try to convey, in vain, how much I love you. Then I will let you help me bake cookies, and I won’t try to fix the ones that aren't exactly round. I will let you stay up late while we lie on a blanket in the back yard and count the stars. I will snuggle beside you for hours, and miss my favorite TV shows. I will let you splash in the tub and not get grumpy when you get the bathroom rug all wet.
This evening, while I run my fingers through your hair as you pray, I will be grateful that God has given me the greatest gift ever given. I will think about the mothers and fathers who are searching for their missing children, the ones sitting in hospital rooms watching their children suffer, and those who are visiting their children’s graves instead of their bedrooms.
And, when I kiss you good night, I will hold you a little tighter and a little longer. Then I will thank God for you, and ask him for nothing, except one more day.
www.caringbridge.org/wi/carlylegrande
Thursday, February 12, 2004 10:40 PM CST Carly had clinic on Tuesday and everything is going along good, she had a bruise on her leg and had been really tired the past few days so I was sure she would be needing platelets and blood, but her counts came back great. The best news we got there was that she could have her Hickman removed next visit. So in less than two weeks my baby will almost be back to the way she was before this horrible disease took over our lives.
I have been kind of down in the dumps lately, the hard part of Carly’s treatment is over but we still can’t get back to normal life. Carly can’t really go anywhere because her immune system is still low. So we have been stuck at home, not that I mind being home with my girls, I love it, but I just wish we could do more, that time will come.
I want to thank everyone for continuing to check in on Carly, I love getting on the computer and seeing a new message. I’m not getting as many as I did when she was in the hospital but I know you are all still checking. Please leave a message if you visit it really means a lot.
There is going to be a fundraiser for Make-a-Wish on Thursday April 22 from 5-8pm, it is being organized by Carly’s wish granters. They are the most awesome people. I will let you all know more details as I get them. Please mark it on your calendars.
Love you all, Karen and Carly.
Thursday, February 12, 2004 10:25 PM CST Carly had clinic on Tuesday and everything is going along good, she had a bruise on her leg and had been really tired the past few days so I was sure she would be needing platelets and blood, but her counts came back great. The best news we got there was that she could have her Hickman removed next visit. So in less than two weeks my baby will almost be back to the way she was before this horrible disease took over our lives.
The other night I was going through the VHS tapes to see which ones had stuff on them and what ones were blank and I came across a tape that Alicia had made for school, it was her and some friends making a commercial and there was a clip of Carly helping out by making a peanut butter sandwich. This had to have been made only about a month or two before she was diagnosed, I got Chuck and we stood there watching it over and over again with tears running down our faces. There were those curls we have not seen in so long, the way she moved and talked and that smile, oh, that smile. How I loved seeing her like that again, she was so innocent, so happy. People have asked me what was the hardest part of all of this, of course it was the pain she went through and having our family torn apart, but what really hurts the most is that we were cheated out of her third year of life. I get very angry sometimes thinking back how she was and how she is now. I remember times when I was doing daycare and Kaylee would take a toy or something away from one of the other kids, Carly without missing a beat would give them hers, she did things like that all the time. Don’t get me wrong, Carly is still one of the sweetest kids I know, it is just that she has such a shield around her now because of all she has been through. She has lasting emotional scars that I pray to God will fade away. She is always ready to please anyone, and really does not want to cause any problems, one time in the hospital when she needed another IV put in the Dr. was checking her hand and her foot to see where it would go in easier, her foot was chosen and after they put it in she with tears in her eyes asked if they could please do her hand later. Most of the times when I have to do something to her that she hates, like change her hickman bandage or wipe her butt when she had sores, she will cry a lot but when I’m done she will say she is so sorry, and that it was her fault, like she has anything to be sorry for, it just breaks my heart. As much as I wish I could go back 10 months and not let any of this have happened to us, I still believe everything happens for a reason and if Carly getting cancer helps us to realize just how precious family and life is then He sure knows what He is doing. I guess I have kind of rambled on, I am just feeling a little emotional lately kind of like I’m in limbo, the hard part of Carly’s treatment is over but we still can’t get back to life as normal yet.
Please keep Carly in your prayers along with all the other children fighting for their lives.
Love Karen and Carly
Friday, January 30, 2004 2:15 PM CST Sorry it has taken so long to update. All of Carly’s scans she had done last week came back clean!!! She may have some hearing loss so we will be getting that checked again in the future. She will be having these scans every three months for at least a year. I don’t know how I will get through it; the fear of relapse is so overwhelming. I just have to keep my faith in God that she will be all right.
I wrote in my last journal about Ryan, and how he really needed our prayers, I am sorry to say that he was called home to God last Wednesday. Please continue your prayers for his mom Kelly and the whole family.
I have stumbled across another child’s web site that I would love if you all would send a kind word or two to the family, her name is Lexy. She has Neuroblastoma like Carly, however she just relapsed after almost two years in remission, her page is www.caringbridge.org/tx/alexiaflory . It's just not fair.
Thank you all for continuing to check in on Carly, I wish I had more to say, The most important thing I can say is cherish every minute you have with your kids.
Love, Karen and Carly
Please check out Carly's new virtual quilt at the link below.
Wednesday, January 21, 2004 10:08 AM CST Carly went in yesterday to start a week of tests, it was a long day, she had a echo to see how her heart was, an injection for the MIBG Scans she will have today, Thursday and Friday and we tried to do a hearing test but she did not cooperate too well we had been there all day and she was tired, but what they were able to detect was a slight hearing loss. We will go back another day and try again, earlier in the day.
I really can't wait to be able to take Carly out to fun places and not just the Dr.'s, We did the first check of her T cells last week and Dr. De Santes said yesterday that they were still pretty low. So we will just keep checking. Carly is having about as much fun around home as she can, she has really been playing with Kaylee a lot more and not watching TV so much, partly because she has been playing on the computer more!! But we try to keep her busy. Her hair is comming in slow but sure as you can see on the pictures, I'm waiting for the first curl to show up.
While things are going along good for Carly, I really wish I could say the same for my sister, Tracie. She had her surgery last Tuesday and when the lab reports came back they had hoped to find only a trace of cancer left but out of the 17 lymphnodes they took out 8 still had live cancer in them. So they went back in on Thursday and took out more tissue. They told her she would have to go through more chemo. She went to see her Dr. yesterday and they have put her in a higher risk status, the new chemo she will take will be in the form of a pill or she could have a central line put in and do it IV. The Dr. also said that if it was to come back after treatment it would be in about 2 years and would most likely be in the bones. How can this be happening?! I just don't understand it. Please tell everyone you know to get those prayers going for Tracie, Please.
We also need a lot of prayers going out for a very special young man up at the hospital, Ryan. His mother Kelly and I have become good friends during our stays. Ryan was finishing up his last chemo before transplant and is having some pretty bad problems. There is always HOPE!!!! I have seen miricals, we need one here.
Love Karen and Carly
Friday, January 16, 2004 2:21 PM CST Carly went in for her clinic visit on Wednesday and most things were looking good, her platelets have been a little low but not to where he wanted to transfuse her. She was also at day 99 out from her transplant, (can you believe it has been that long already) and day 100 is when they start to wean her off some of her med’s, so she will be able to stop taking two of them. She still has to wear a mask when she goes out and has to avoid crowds, boy, I just can’t wait until we can start going places. But until we get some good counts of her T cells we will just have to hang low. This blood draw is the first one where they will be checking for them because they usually don’t show up till about now. He was concerned about her hemoglobin (red blood cells) because they have never really recovered, and her white blood cells have been pretty low too. At first he said maybe she should have a bone marrow biopsy, but I immediately reminded him that she just had one, I asked him why he thought that would be helpful and he told me that a sign of the cancer returning was low blood counts, but he looked up her results of the bone marrow biopsy on the computer and everything looked good, thank God, I also was looking on the screen when he was and read the only sentence I could understand, NO EVIDENCE OF NEUROBLASTOMA, I just love saying that. Dr. De Santes thought it would be best if Carly came back up on Thursday and got some red blood and maybe platelets. So the next day up to the hospital we went. Her platelets took a jump over night from 17 to 22 so all she needed was blood. We settled into day treatment popped in a Barney video and ate string cheese. Everything was going along good until we were about to leave, Dr. Popasku came in to tell me that Carly’s calcium was too high and potassium too low and that she would need to be hydrated at home, so Carly’s least favorite thing, being hooked up, is something I will have to do for 14 hours a day for 5 days. The pump we are using is smaller than the ones in the hospital and there is a back pack that you can put the pump in along with the bag of fluid and the battery pack it takes to run it, she is supposed to be able to wear it so she can walk around and play, but it is huge, almost bigger than Carly so that is not an option, I would get tired out carrying that thing around, so she will be hooked up mostly at night. Next week when we go back for clinic they will check her counts again and if they still are not good she might have to be admitted, lets all hope not. I hope everyone has a great weekend, please keep Carly and all the other kids up at the hospital in your prayers, God Bless you all.
Love Karen and Carly
Monday, January 12, 2004 8:41 PM CST We are home from the hospital before you even knew we were gone! Carly was not feeling the best the last couple of days I think it was a mix between being weak from not eating and still sore from the bone marrow biopsy. so when on Sunday she started running a low grade fever I called the Dr. We decided to just keep a eye on her temp, but when she threw up and had a higher fever I called the Dr. back and he thought it would be best to have her looked at. So at 9:00 Sunday night I took Carly up to the emergency room. They took blood cultures from her tubies to see if there was a infection there and they also had to get blood out of her arm so she needed a poke, she did not like that too much. She was also breathing pretty heavy and fast, not something I wanted to see, so they gave her a chest x-ray too. It was a little hazy on the right but they were not too concerned and would do another x-ray in the morning (which they never did) her temp got up to 101.8 that is really 102.8 because you add a degree under the arm. With her counts being a little low, the fever, her vomiting, and being dehidrated they decided to keep her over night for observation. So today up there it was like old times, I got to see a lot of the nurses and Dr.s who took such great care of her when we were there. They are doing construction on the hemoc unit so we were down in the PICU, it was better than the unit because the rooms are bigger and the bed is better, not that I got much use of it because it was 4:00am before we got to the room. They gave her some antibiotics and fluids and just let her rest. My sister is having her surgery tomorow and I really wanted to be there so I was really wanting to be able to go home, with nothing growing in the cultures and her not spiking another fever they thought it would be ok, if something did grow we are close and I would be right back up there. So they gave her another antibiotic and off we went. Please keep Tracie in your prayers that she has a speedy recovery.
Love you all, Karen and Carly
Friday, January 9, 2004 12:59 AM CST No evidence of cancer anywhere in Carly’s bone marrow!! Thank you God. I just know He will see her through the rest of the tests.
Dr. De Santes still wants to still see Carly every week, her blood pressure is still a little high and her white count has made a significant drop and he does not know why. He just wants to keep a close eye on her. Everything has been going along good with the Cis-Retionic acid, her lips get really dry and chapped but no mood swings (other than any other 3 year old)
Our Make-A-Wish plans are moving along; we will be going the week of the girl’s birthday, May 6 - 13. It is going to be such a blast. Carly will be in such better shape.
I really don’t have much else to say, Thank you all for continuing to check in on Carly, it means a lot!!
Love Karen and Carly
Thursday, January 8, 2004 1:40 PM CST No word yet on Carly's bone marrow biopsy, Sharon said it might be tomorow. No news is good news, right. She is feeling pretty good today, was real sore yesterday from the procedure. I will let you all know as soon as I know.
Love Karen and Carly
Saturday, January 3, 2004 10:12 AM CST HAPPY NEW YEAR TO EVERYONE!!!
And what a wonderful year it is going to be. I have no problem saying goodbye to 2003. Our Christmas was fantastic, thank you to all the secret Santa’s who made the girls Christmas so special, they really were spoiled. We had my sister and her family over for Christmas Eve and just hung out. On Christmas day we just stayed home, Carly has to be really careful where she goes still she has to wear a mask everywhere, G’ma Louise, Chucks mom, had Christmas day this year and it was really hard not to be able to go over there. G’ma got the girls a new sled, the old fashioned kind with wood and metal runners, they can’t wait to go sledding again, but we need some snow!! I think we have 5-10 inches coming tomorrow so that will do. New year was kind of laid back too, Tracie and her family came over again and we cooked up a big dinner. Tracie is all done with her chemo now and will have her surgery on January 13, (I’ m looking for a babysitter that day if anyone is available) she will then have radiation every day for 6 weeks. I tell you this entire family has had enough of cancer for now. Carly has been going in for her weekly check-up’s and every thing has been looking good, we had to hold off one week to start the cis-retonic acid because the proteins in her urine were too high, but they were ok on Tuesday and we started the med’s the next day, this drug is supposed to make any remaining cancer cells mature in to healthy cells. As willing as I am to give this to her, I still hold on to the hope that there are no cancer cells in her anyway. She will be on the med for two weeks than off for two, and so on for 6 months. My fears will be washed away this Tuesday when Carly has been scheduled for a bone marrow biopsy to check for neuroblastoma. She will also have some scans. Dr. Puccetti also said Carly could start being seen every other week instead of weekly, all things are going in the right direction, Thank You Lord!!! I took Kaylee swimming yesterday and she had a blast, Carly really wanted to go but with her tubies she can’t, hopeful they will be coming out soon, she still need blood counts so when they do come out she will have to be poked, but I think she will do fine. Well I will try to keep this page updated more often, I just love checking in and seeing all the people that have checked on our little miracle girl.
Love Karen and Carly
Thursday, December 18, 2003 10:37 PM CST What a awsome couple of weeks we have had. Carly finished up her Radiation on Tuesday and she had a clinic visit on Wednesday Dr. De Santes was sick so he did not come in to exam Carly because he did not want to get her sick, so I did not find out all I wanted to about what is next for Carly. I do know we are going to do the Cis Retonic Acid treatment but I don't know too much about it. Carly will be having clinic visits every week for about another month then I think it will go down to every other week, I will be seeing Dr. Puccetti on Tuesday and will try to get more information on what is comming up.
Carly is really starting to feel better, she is playing with Kaylee more and Kaylee sure loves that. We went sledding last week and that was a blast, Carly was a little scared to go fast but Kaylee just zooms down the hills. Alicia tried to snow board but ended up sledding instead. We really have not been doing a lot because Carly can't really go anywhere, so we have just been hanging out getting ready for Christmas. What a GREAT Christmas this will be.
We are forging ahead with our Make a Wish plans. When it all started we decided to do the usual thing which was a trip to Disney World. But then I saw in their news letter that a boy asked for a camper. We had to sell our camper when Carly got sick, so I started thinking what would Carly like better, Disney would be a blast but would be over just like that and she would never remember it. With a camper we would have years of weekends of fun. Well now we have gone back to our first choice, Disney here we come. But it is even better because we are going to do a land and sea package where we do the Disney Cruise first for I think 3 nights then over to Disney World for 4 nights or something like that. We are planning to go the week of the girls birthday, May 1-8. I have gotten them on the computer and showed them the site for Disney and they are so excited, Kaylee everytime we watch a Disney video and they have a ad for Disney will jump up and down and say were going there, were going there. I sent away for the vacation planning video they offer and I'm sure it will be played over and over again. I think the cruise is such a good idea because the girls will be able to see the charaters better than at Disney, when we were there before the only time we saw them was in the parade. On the ship they will be all over the place playing with the kids. We just can't wait.
I hope every one has a wonderfull Christmas, Peace, Joy and Happiness to you all.
Karen, Carly, Chuck, Alicia and Kaylee Le Grande
Monday, December 8, 2003 8:19 PM CST Today when me and Carly were leaving the hospital after Raidation she wanted to climb up this mound that is outside the entrance, It was cold and I just wanted to get home so I told her maybe next time. I got 5 feet past it and turned around thinking this is the kind of thing that is right along the same lines as stopping to smell the roses. So I got her out of her stroller and hand in hand we climed to the top of that mound, giggling all the way, she was so proud of herself. We stood there looking around and everyone passing by was looking at us, I felt like I was on cloud nine, up there with her. After a few minutes I asked her what we should do now, without a second thought she said "go back down" How could I have not known that!! Life is so short, and you never know what will happen, I know you all have heard all that before, I have too and I'm not trying to preach or anything, Just find that mound and CLIMB!!!
Love Karen and Carly
Thursday, December 4, 2003 10:23 AM CST It has been so nice being home, knowing we don't have any more hospital stays makes it even better. Chuck was able to come home on Saturday, during the day on Saturday me and him went to Kids with Courage. It is a event the Childrens hospital puts on every 5 years for the kids, it was really great, I got to visit with some other moms I have come to know and even met Cindy Crawford. She lost a brother to cancer back in 1975, and has been a big supporter ever since.
Life has been getting pretty much back to normal around here. Carly, the first week home just wanted to watch movies and sleep, but now she has been playing more with Kaylee and the rest of us. She started Radiation on Monday and is so good at laying still, we have 8 more to go than one more cancer treatment and we will be done. On January 7th it will be 3 monts post transplant and they will do tests to detect cancer, I am going to go nuts waiting for the results. But I know she is cured and will not have any more problems. They are even saying at that time it is a good time to take out her Hickman, swimming and baths here we come!!!! She has eyelashes and eyebrows now but her hair on her head is taking alittle longer to come back than I thought, it will come, I just want to see those curls again!
I have the house all decortated for X-mas and the girls love it. We always go out and chop down a tree or go pick one out but Dr. De Santas said it might not be a good idea to have a dead tree around being so close to transplant so we got a artificial one. It is fiberoptic and just beautifull. Chuck put up our outside lights and they are just beautifull too. Now all we need is some snow. Kaylee has been making snow angels on the living room floor and Carly wants to make a snowman so bad, (get ready Jackie) I heard we might get 3 inches by tomorow, I hope so.
So that is about it for now, I hope everyone had a great Thanksgiving and is looking forward to Christmas, Just slow down this year, look around more, be patient, hug your kids, your husband, your wife, remember what this time of year is all about, I know I will never look at Christmas the same way again. He saved my childs life you know!! Love to all, Karen and Carly.
Wednesday, November 26, 2003 1:21 AM CST We are home!!! It has been a busy couple of days, sorry for not updating you all sooner. I just can't explain how great it is to be home, Carly is so happy. She is still really weak and not feeling real well but she really is trying to play with Kaylee they missed each other so much. She is eating good and sleeping in her own bed!!!
We had a real bitter-sweet home comming, on Sunday after I had spent the day with friends and family cleaning the house, I was sitting talking with Chuck and I noticed his ear was really swollen. I told him he needed to get to urgent care and have that looked at, well they said he had a massive sinus infection and his lymph nodes in his neck were infected too. They gave him 2 shots and a perscription and told him to go see a ear nose and throat Dr. in the morning. So Monday Chuck spent the whole day at the Dr.'s office getting tests, seems he might have Shingles!!! That is like the worst thing he could get now because he can't be around Carly if he does, His Dr's were even saying Carly should not go home because Chuck was in the house and it might not be safe for her, but we checked with Carly's Dr's and they said it really had to be one on one contact, that was a scare. Anyway during Chucks visit they were also trying to come up with what was going on and also thought it might be Relapsing Cronic Poly Disease, that is where his body attacks the cartaledge, can you beleive this, they took like 10 tubes of blood to run all kinds of tests like a bone density one, of course one for the shingles and a bunch else, he had a chest x-ray and they put him on steroids! The worst part is Chuck can't come home untill we know what is going on with him. So on the most important day, Carly's comming home, Chuck could not be anywhere near her, he had to go stay at his moms. I was hoping to get some answers today, but no tests are back so he is at his moms again. Hopefully we will know something by noon tomorow!! So please keep Chuck in your thoughts now as we venture into the unknown again. I just want my family back together!!!!!
Karen and Carly
Saturday, November 22, 2003 1:32 PM CST
WE ARE GOING HOME ON MONDAY!!!!!!!!!
One by one Doctors have been comming in to go over things we need to know about going home, there are a lot of things we need to be carefull with still, she can't go anywhere unless she wears a mask, no one can be around her if they are sick and she has many food restrictions. But I think I can handle it, I just want to go home. These things are temporary, untill around day 100 out from transplant, we are at day 46 now. However her immune system wont be back to normal for a least a year.
They have decided to go ahead with Radiation, there was a concern with all that she has been through if it was worth the risk, but it seems the benifits of her getting the radiation far out weigh the risks. So she will have 12 treatments starting on Dec. 1, She will have clinic visits (it is so cool to be saying clinic visits instead of hospital stays) every week with blood draws and just checking her over. She will be getting a scan every month for 3 months than once every 3 months and so on.
These last few days have been just awsome with Carly, she has been getting therapy to help with her muscles and walking and small motor skills and she is just blowing away the teachers with how good she is doing, just this morning she was out in the halls riding around on a scooter, it is just amazing. She is going to be back to the old Carly before we know it. It brings tears to my eyes to think about Carly and Kaylee's first time together, I can just see them hugging and walking off hand in hand to go play.
WERE GOING HOME!!!!
Wednesday, November 19, 2003 1:08 PM CST Carly is on a roll!! She has been on room air while awake since yesterday, and today they said they were going to try napping and night time with out the C-PAP both huge accomplishments. She had a NG tube in her nose for feeding but they turned it off yesterday because she was eating well, they left it in to give her her meds but this morning I said she really does well with her meds and it would be ok to take it out, so they did!! She only has her Hickman left in, no other tubes or wires coming out of her. I have been holding her every chance I get. She has also been going for physical therapy every day and that has been helping with her strength and walking she is still a little wobbly but is doing great. Now the best news of all, Dr. Matlube came in this morning and said it looks possible to make it home for thanksgiving, can you believe that!!! To think she was on a ventilator one week ago and they are talking about her going home. This will be the most thankful thanksgiving ever!!!!! Love, Karen and Carly
Sunday, November 16, 2003 6:29 PM CST
We are out of the PICU! Carly was able to move back down here last night, she could not be doing any better. I have had her out for wagon rides, doing puzzles (which she was doing Wednesday morning before she was even taken off the ventilator) We had her down to physical therapy on Friday and had her standing with our help, drawing on a mirror and wiping it off, sitting on a swing to help with balance and she did great with it all. I have been keeping up with her therapy this weekend by taking her out for wagon rides, having her play with things, puzzles, play-doh ect... she has had a bit of a attitude, but who can blame her, I'll take her yelling at me anyday!!! She has even started to eat a very little, she had two bites of yogurt and a bite of sausage for breakfast, a bite of mashed potatoes for lunch and as much pepsi as she wants, having her eating is a huge factor in her quest to go home so I order her anything she wants. Alicia came and stayed over night with us last night and it was the best medicine for Carly she loves her big sister so much and Alicia had a blast playing with her. Carly even got to see Kaylee last night and vise versa, only through a window but they have not seen each other for 7 weeks so It was very special they both had huge smiles. So we are just going to sit tight and keep getting better and better, so we can get home. Thank you everyone for your Birthday wishes, Love you all!!!!!!!!!!!
Karen and Carly
Wednesday, November 12, 2003 7:45 PM CST This morning in rounds they said Carly would be ready to come off the ventilator tomorow!!!! I was so happy but also very scared. Next thing I knew was that Tina (our nurse) said she heard Carly Coughing which meant there was a leak around the cuff in Carly's throat, I was about ready to go into panic mode when she assured me it was ok and actually a good thing because that meant there was no swelling, because of this they thought it might be better to extubate her today. And that's what they did. CARLY IS OFF THE VENTILATOR!!! She has been doing great, her oxygen is good and she is not breathing too fast. They have her on C-pap but that is just to help her not because she really needs it but they want to prevent anything if they can. The next few days will tell us a lot. I don't think I will get a wink of sleep tonight. Please keep Carly in your prayers that she will continue to improve and her lungs will stay strong.
Love, Karen, Carly and Family
Sunday, November 9, 2003 10:47 AM CST WHAT A BEAUTIFUL DAY!!!!!! I think we have reached the corner! Carly's lung looks to be completly open, they are going to take out her foly cathader that goes to her bladder, and the Gambro cathader that was used for the diylasis, both huge steps in the right direction. She will still be on the ventilator for the next few days but they are lowering settings. This morning I put a Barney movie in and was watching it with her, when the boy pulled out the rabbit from the hat I turned to look at Carly and she smiled, I was bawling. She can't talk but mouthed to me that she wanted apple juice, soon, very soon I told her.
Friday, November 7, 2003 9:41 AM CST Carly has had a good couple of days. They have continued to do therapy on her lungs and it seems to be doing some good, all we can do right now is wait, everything they are doing is working, I can't explain everything, please know I would if I could. We just need to take one day at a time and pray things keep going smoothly. We are almost to the corner.
Wednesday, November 5, 2003 9:05 PM CST Carly’s left lung was totally collapsed yesterday and today, I did not know it was that bad when I wrote the entry this morning, I just thought it had fluid in it that they were having trouble getting out. They have done some pretty aggressive therapies on her today, everything from beating on her chest to loosen up the secretions and sucking the mucus out, and using a special machine that hooks up to her ventilator and gives her vibrating puffs of air to help open it up. They seem to be doing something because they are saying she sounds a little better but we really won’t know for sure until they do the x-ray tomorrow. It could take up to a week for the lung to open up. Her heart rate and blood pressure have stayed stable today. They have put in a NG tube to start giving her some nutrition right in to her small bowel in hopes of getting her moving around in there it might do some good too. They also have been working on her muscles as they are getting very weak from lying in a bed for almost 6 weeks.
Thank you everyone for all your support through this horrendous time, please know how much your guest book entries help me through the day, I check it when ever I walk by the computer in the family room.
All our love to you, Karen and Carly
Wednesday, November 5, 2003 5:54 AM CST How do I even begin to tell you all that is happening to Carly, she has so much wrong with her and they are doing so many things I can't keep it all straight. She is still on the ventilator with the pressures still pretty high they have been able to lower the oxygen they are giving her and she is holding it good. The other day they switched ventilators thinking she would do better with a different kind but decided to go back to the first one. When they first put her on the vent they paralyzed her and had her very sedated, they tried taking her off the paralyzing drug because that in itself has some dangers but yesterday she was getting too agitated so they paralyzed her again, she was also trying to fight the vent by breathing over it and that could cause her some damage too. In my mind I was thinking to just let her sleep and not move so she can heal up those lungs, but in the back of my mind also knowing the dangers of so much sedation, She is also on the hydro filtration (dialysis) machine and they keep increasing the amount of fluid that is good they need to keep her dry, fluid goes right to her lungs. She needs to have a lot of this stuff called heprin that thins the blood so it flows through the machine, the system kept clogging up so they kept giving her more heprin and there was a danger that she might become heprin intolerant. There is a different machine that will do the same thing without the heparin but it has more side effects. Her blood pressure has been up and down, her heart rate is really down compared to what is has been. This morning at 4:00 the resident came and woke me up saying Carly’s heart rate was really low and her blood pressure was very high, they were concerned about bleeding in her brain. They took her down for a CAT scan and that was really scary because they had to take her off the ventilator and bag her all the way down then hook her up when they got down there. It was quite a big deal getting her down there, with all the nurses and Dr’s, thank God there was no bleeding but now they still have to find out why her pressures are high and heart rate low. So here we go with another day of uncertainties.
Saturday, November 1, 2003 8:35 AM CST Carly had a good night. The pressure on the ventalator to get air into her is still at the highest setting, they were able to lower the amount of oxygen they are giving her and she is saturating at 95-100% so that is good. Yesterday morning the Dr. that was taking care of her came in to tell us what he thought was happening, he said it was probably Fibroses, that is a scaring of the lungs, it makes the lungs very stiff, and that is why it is taking so much pressure to get air into them, it is not reversable and you will die from it. This pretty much left us feeling very hopeless. Later in the day a lung Dr. came in because I wanted to talk to a specialist about this, he said he looked over her X-rays and Cat Scans and did not think it was Fibroses, Thank God, He thought it was more like Pulmanary Ademia, that there was just more fluid in there, how ever this does damage and Fibroses is still possible, but he gave us some hope.
Carly has a long way to go, but she IS a fighter and I know with all the prayers that are going out to her she will pull through, God's love for her is evedent.
Friday, October 31, 2003 11:16 AM CST Carly has been put back on the ventalator, they were not even sure if she would make it through the night. They are doing everything they can, there is very bad damage in her lungs, she will go back on dyalsis, they are going to give her steroids, some Dr's say there is not much hope, others say they are going to keep trying, Lord please help this child, WHY!!!!!!!!!!!!!!!!!!!!!!!!
Thursday, October 30, 2003 9:31 PM CST Carly is doing pretty bad again, we had gone back to the regular unit on Tuesday thinking she was going to keep getting better, but the very next morning she started breathing really fast again and not holding her oxygen and her blood pressure was way up there, the sent us right back to the PICU. She has been throwing up and choking alot on the thick mucus, her blood pressure is hard to get down because she just throws up the medicine. they did a ct scan and it looks worse than the last one, and they did a chest x-ray that shows fluid, they have put her back on the Bi-Pap with 40 percent oxygen, she is getting scheduled laysex it is a med that makes her pee, hoping to get some of the extra fluid out of her, they are going to do another chest x-ray tonight, I'm scared.
Sunday, October 26, 2003 5:31 PM CST Things have been going very well for Carly, I have so much to tell all of you, but I am spending some very much needed time with Alicia and Kaylee. However, I wanted to get these pictures on the page so you can all see for your self what your prayers have done!
Tuesday, October 21, 2003 11:12 AM CDT I wanted so bad to update this yesterday and tell you all that Carly was doing better, because I know how upset everyone was, but it seems like every time I said things were going better things got worse again. But not this time! Another day has gone by with Carly improving! The Dr.'s have lowered her ventilator settings both days now, the oxygen it is giving her is now not much more than room air, also the peep level is down to 4, that is the amount of pressure to open her lungs, she is doing the rest! They have incresed the amount of fluid the dylisis machine is pulling off, and that is just helping her more. She still has very bad sores in her mouth, and we are cleaning it out 4 times a day, she really hates it and wakes up when ever she is messed with. They started her on a patch that is susposed to increse the effects of her pain med's, instead of giving her more drugs, it will also help with withdrawl. They are pretty happy with how most of her electrolites are staying in the correct range and her blood work looks great too.
It has been so hard to see my baby like this, she wakes up because the nurses are doing something and she just holds my hand so tight, when we are doing her mouth care you can just tell she is trying to screem. I am still always itching her back and really all over, laying on your back in bed you know how you get all sweaty and hot, how I would love to throw her in the tub and just scrub her all over, she has not had a tub bath since April. Her beautiful blue eyes are starting to clear up now they were so cloudy and grayish. She looks like she has been draged by a horse for miles because her little body is all black and blue, her platlets are low so she bruses if a piece of tape is taken off, her skin is very sensitive and it even tore alittle when a band aid was taken off. I EVEN FEEL A LITTLE STUBBLE ON THAT HEAD OF HERS!
On a final note I wanted to apologize if I made anyone uncomfortable with the pictures of Carly I had on the page, I thought about it awhile and even checked with Chuck about how he felt about it. I have taken them off and will put more on of her when she is feeling better
Thank you all so much for everything, Praise the Lord, Love Carly, Karen and Family
Sunday, October 19, 2003 10:43 AM CDT Just when you think things could'nt get much worse, they do. There is a condition called Veno-occlusive disease that effects the liver, it is the result of high doses of Chemo, this is something that during the pre transplant confrence the Dr's said would probaly not even happen but they had to go over it anyway. It is a very serious condition that they don't have much medicine to help with it, they have something that might help in the early stages but no evidence it works, there are no side effects so they are going to start her on that, however if it advances too far there is nothing they can do and death is almost for sure. It is a disease that the body just has to kind of clear up it self. The disease usually shows itself 3 weeks after chemo is started so we are right in the middle of that, the way they keep track of how far it is going is by checking her bili-rubin levels, normal is around 1.5 hers was at 2.9 on friday than up to 3. than down to 2.4 as long as it does not keep going up things are looking better with that. Carly also was not able to hold her oxygen even though we had her on the Bi-Pap all the time. Her breathing was just as bad as it was when we came down here. The X-rays showed more fluid and her blood presures were not holding steady. Friday morning at 5:00 the PICU Dr. came in a woke me up and told me through the night Carly really went down hill and there was no other option but to put her on a ventalator. Things were moving pretty fast around there, They gave her a drug to put her out while they inserted the tube. To go in there when they were done and see my baby with that tube in her and just laying there not able to talk or move was another one of the most heart rentching experience of my life. This whole thing has been my worst nightmare come true. Dr. De Santes and Dr. Gowens two of Carly's hemo Dr.'s took me aside to explain what was happening and what to expect with this treatment. It was not very incouraging. First of all none of this lung stuff should be happening, it has nothing to do with the transplant, in fact she started to get sick even before the transplant. All the Dr's seem to go by are past experiences with other paitents, and according to them someone in Carly's condition don't do very well. They pretty much told me when things have gone this far it is really hard to get them off the ventalator and they will die. The worst part is they have no idea what is going on, weather she has a infection or her lungs just got damaged somehow. Here we have gone through 6 months of hell treating Carly for Neuroblastoma, she is almost for sure cured of that and now some damm lung thing might do her in. Another problem with the Chemo Carly got this time is that it is really hard on her Kidneys, Dr. De Santes had read in some journal of medicine that kids in this type of situation might fair better if they are put on dialysis that way their kidneys wont have to work so hard. So they needed permision from me to put in a groin cathader because they need a larger line for the blood to go in and come out and a IV line is just not big enough, just as well because she has a IV line in her foot, hand, arm, and of corse the double luman hickman in her chest anyway, she needs so many ways to get in to her because of all the antibiotics and blood and fluid and just stuff they are pumping in to her, not every thing is compatable together. They really needed to try to find out what was going on with her lungs so they did a Broncoscopy, that is where they put a tube with a camera on the end down the tube in her to look into her lungs, they were also able to take some samples of the fluid to test them for infections, every thing under the sun as Dr. De Santes put it. One good thing about that was they saw no damage in her lungs, however that was on the inside no telling about the outside of them. So the whole day was spent trying to keep Carly comfortable and asleep, she would kind of wake up and try to pull at the tube, so we had to put "no no's" on her arms so she could not hurt her self. She also has been itching really bad from the morphine and it's next to imposible to figure out where to scratch, she trys to point so I just scratch her all over, she gets benadril to help it but I dont think it helps much, they are going to switch to a different kind of pain med that does not have that side effect. Yesterday morning and this morning when I sat in on rounds with the Dr's the report has been things are holding steady, the X-ray this morning does not look much different than yesterday, her counts are starting to even out so that is good but Dr. De Santes said we are no way out of the woods yet, but is hoping we are headed that way by her not getting worse. Keep the prayers and thoughts comming, Love you all, Carly and Karen.
Tuesday, October 14, 2003 6:27 PM CDT Continuing from my last entry. Things haven't gotten any better for Carly. Friday morning, where I left off.... Things continued to get worse as far as her breathing goes. She was kept on the Bi-pap machine which is a non-invasive respirator. It gives out little puffs of oxygen. Kind of gets her into a pattern of regular breathing by forcing oxygen into her with a mask on her face. The mask is held on by kind of a hood that straps around the back of her head and holds the mask tightly to her face. Carly has never been one to wear any kind of mask. She even hated the little masks going into the hallway to the hospital. She was so exhausted just from trying to breathe, she didn't put up much of a fuss getting this mask on. She is being such a little trooper. Some of the big problems that the Doctors are having with Carly are getting all her electrolytes back to the right levels. For example. They see her sodium is high, they give her medicine to bring the sodium down, however, they need to be careful not to bring it down too fast because it can cause fluid on her brain. Last Monday they started her on liquid nutrition but had to stop it because her blood sugar got too high. They held off on it for a while, then they tried starting it again with less sugar in it but then her labs came back that her sodium was too high so they stopped it again. They stopped it again, worked on getting her sodium back down again and just today (Tuesday) started it up again with much less sugar and sodium in it.Today her sugars were high, they gave her insulin to bring her blood sugar down, they it got too low, they gave her glucose to raise it up again. It seems to be a never ending battle just to regulate her weren't letting her have anything to eat or drink because she has been vomiting. They don't want her to vomit into her mask because if it gets into her lungs she will end up with pnemonia. She would do anything for a drink of something. When she does get to have a drink of something it is just two teaspoons of water or apple juice, she is so cooperative in anything the nurses want her to do in order to get that teaspoon of water. It is so sad to see her suffer so. She is so precious. This morning was absolutely the most horrible ever. She woke up at 5:30 begging, begging,...please mommy, please, just one drink, please please please..just one second.. please mommy please please please, I'm so thirsty, just one second, please mommmy. That doesn't even describe what she is going through during that time. It is so sad to have to say no to her, she is so sick and so sad and so thirsty and in so much pain it is unbearable to watch. This morning I finally gave in, I can't stand to see her suffer like that. I ran out and got her an apple juice. She drank the whole thing. A nurse told the doctor that I gave Carly the juice and they finally realized how desperate she was and they agreed to let her have water She is hurting all over. Her whole body has bruises on it. She feels pain in her leg or her arm, shoulder, wherever, she needs a bandaid on it. Somehow that makes her feel better. Her potassium is out of wack. All her bloodgasses never come back right. Something is wrong with every part of her. The doctors are detecting problems with her heart. She is having problems with her kidneys, with her liver. She needs blood everyday. Platlets, red blood cells. Where does it go? The nurses that take care of Carly, only take care of Carly. They don't have any other patients. They never stop working. They never sit down. They are in and out constantly, drawing labs, checking blood pressure, changing medicines, doing this or doing that. It is hard to believe that it is so much work to keep this little girl on the right track. As for the blood pressure. They haven't been able to take it since about noon on Monday because she is having problems with her muscles. She can't stand the pressure that the blood pressure band give her. It hurts too much. She wiggles, cries, moves and it just won't work. She is having problems with her muscles because she has been lying in bed for two weeks. Her muscles are not in good shape. Today she wanted nothing more than to get out of bed. She wiggled and was trying to get out of bed, finally a nurse and I got her and me into a chair, she wanted to get down, to wash her hands, to do anything. She is so weak and shaky. If I would have let go of her should would have fallen right down. Yesterday they decided to let her have a couple of three hour periods where she was off bi-pap and just on oxygen. She seemed to do pretty good. This morning when they did her x-ray she seemed to be improving and turning the corner for the best. They decided to try two six hour periods today. Four hours into the first one, at 11:00 this morning she started really fighting to breathe again so we put her back on bi-pap. She only made it four hours. They did another chest x-ray and it showed more fluid than even five hours ago. Looking at the cat scans, they are now concerned about her kidneys and are looking into that. Just when you think things are improving, they turn around and get worse.
So, that's where we are now. Please keep praying for Carly's improvement.
Love, Karen, Carly and family....
Friday, October 10, 2003 7:07 AM CDT Where do I even begin to tell you about the last couple of days, so much has happened. By Sunday Carly's mucositis got really bad and her vomiting turned to all blood from the sores sluffing off, she spent the next three days throwing up blood, she was also getting fevers so they started her on antibiotics. I cant believe how much this chemo wiped her out, I knew it would be a hard one but this was worse than I expected. By Sunday night Carly started having trouble keeping her blood pressure up the Dr's were trying different things to help her keep it up including giving her more fluids, this seemed to help but by giving her so much fluid it caused her oxygen level to drop, so then we would hold off on the fluids and give her oxygen. She would hold steady for a couple of hours than the blood pressure would start to fall it was so frustrating. By Monday the Dr's thought it would be best if Carly went down to the PICU. While there they gave her a drug called Dopamine to help control her blood pressure, incresed her antibiotics and just keep a good eye on her. Than the day came that I have been waiting 6 months for, the transplant. I was glad to be down in the PICU, if anything was to go wrong that was the place to be I have heard that there could be some pretty bad reactions from this, even though they are her own cells other problems could come up, like a drop in blood pressure, this really made me nervous cause that was why we were down in the PICU. Just like I had heard before the transplant itself is kind of uneventfull, when they brought in the stem cells they were just in a couple of syrings, they just squirted them in to her central line. She on the most part slept through the whole thing. she did wake up a little and put up a fuss but I think it was either all the people in the room or the cells might have been cold. When it was all done and Dr. De Santes (he is the head of the transplant department)came over to talk to me all I could do was shake his hand and say "thank you" I mean what do you say to someone who just put the life back into your child?! By 3:00 Carly was ready to go back to our unit. She slept comfortably the rest of the day. Than by Wednesday things started to go down hill. Carly would be spiking fevers they would culture her blood and nothing would grow, they would put her on a different kind of antibiotic and wait. By now she was starting to have some breathing issues, they gave her a x-ray but it looked ok. We were all stumped as to why she was having these problems. Again her blood pressure would go up than down, they would give fluids, draw labs, change antibiotics, wait, wait, wait. Thursday came and things were not getting much better. She was struggling so much to catch her breath, and her blood pressure was starting to drop again. It was decided to take her down for a Cat Scan to see if that showed anything, Carly was so sick that they took her down right in her bed, usually I hold her while I'm pushed in a wheel chair, but when we got down there there was some kind of mix up and they could not do it, so back up to the floor we went, Dr Gowens was so mad at the CT people for putting Carly through that. They sent for the x-ray people to come up and just do a X-ray. It did'nt look good, they were not sure if she had an infection or if her lungs were full of fluid, and of course her blood pressure started to drop again. By now Carly had been working so hard on breathing that the Dr's did'nt even think twice on sending her back to the PICU. They had to get her blood pressure under control but most importantly had to help her breathing. It was discused that they might have to put in a breathing tube, but first they wanted to try a forced air mask, I was not sure how Carly would handle that because she hates to wear masks, but she did ok, I think she was just so exausted from working so hard on breathing that when she had the help she kind of let that do the work and she just slept. It's Friday morning now and she slept pretty well last night, I pray today will be a better day. Have more to write about but I have to get back to Carly, check back soon. Love Carly and Karen.
Saturday, October 4, 2003 9:39 PM CDT According to the Dr.'s everything is going along as planned, however that does not help me cope any better with this whole process because Carly is so sick right now. She had another reaction to the anti-nauesa drug they gave her on Thursday, she went completly balistic again even a little worse, I had to literly hold her down on the bed with my legs wrapped around her to hold her still or she could have hurt herself, it was awfull. They had to switch the anti-nauesa drug, of course, and what they had to give her does not work as well, so that is why I think she is getting so sick now. It started yesterday, she got sick in the morning then seemed to be doing ok, Daddy and Alicia came up and she was happy to see them but was really tired and just wanted to sleep, they left and she got sick again. This morning I woke up and realized that today at 1:00 they would be ending her chemo, never again would that poison be pumped into my daughter. However the effects of it were still taking there toll on her, she would get sick than say she was sorry to me, I could'nt hold back the tears telling her she did not have to be sorry. She would fall asleep wake up and get sick than fall back asleep, this went on all day, I dont think she was awake more than 3 hours today, she didnt even want to watch Barney!!! Around 3:00 today her temp started to go up and they got a culture going, I wont know if it grows anything for 24 to 48 hours, so they are just starting her on antibiotics. She has these next 3 days to just rest than on Tuesday they will give her her cells back. Carly has stopped eating, most likley because of the nauesa, but it could be that she is starting to get mucositis, that is the sores she will get in her mouth and they will go all the way through her GI track they say the ones in the throat are the worst. She will be started on TNA (liquid nutrition) most likley on Tuesday. She also got a little bloody nose this morning so I'm sure the transfusions will be starting soon. This beautiful little baby girl of mine woke up when the nurse was taking her vitals just now and named all the animals on her shirt, nothing is going to stop this child of mine!! Love to all of you, from all of us. Karen and Carly.
Wednesday, October 1, 2003 10:33 PM CDT I want everyone to know what a great time Carly had on Sunday, she is still talking about it. Thank you to all who came or just thought about us that day and every day. Tracie and I got up here on Monday before Carly to decorate her room, it really looks cute. Chuck brought Carly up and when she saw her room with all the lights and posters and stuff her eyes grew sooooo wide, but then she kind of put her head down on my shoulders and would not look around anymore. I really don't know why, I think maybe she got the feeling that because it was so made up that she would be staying awhile. But I have added more stuff and she really likes it now, we look through magazines and find pictures to put up on the wall. So all in all Monday was really quite uneventfull. The Chemo was started on Tuesday around 1:00pm, she has 5 pumps of stuff going into her. She is still feeling good and has a lot of energy. Today however has been a trying day, She woke up in a good mood but when it came time for her to be washed up she wanted nothing to do with it. We have all come up with a plan to help Carly through this, She has had in the past trouble compling with things that need to be done with her, like washing up, brushing her teeth, taking meds ect... so what we do is tell her we are going to to so and so and if she agrees she will get a sticker to put on her poster or get something out of her grab bag, but if she won't cooperate she is given a 5 min time out, we then come back in tell her again what we are going to do, if she still won't she gets another time out, after that if she still won't work with us we have to just do it with her kicking and screeming, and that is just how it was all day to day. She really was having a bad time this noon, she wanted nothing more than to get out of her room. She has never gotten out of bed on her own but today she was almost jumping out, she was trying to get the door open I had to stand in front of it so she could'nt get out, (she cant leave her room at all, even with a mask on) she was really getting too upset and the nurse finaly went and got the Dr. we decided to give Carly something to calm her down. After a few minutes she would let me hold her and was saying "I'm scared" it tore my heart out, we just layed in bed a cuddled. She took a pretty good nap, and woke up in a better mood. She still put up a fuss with more of her cares but is begining to relize she has no choice and if she does not want a time out she better do what we say. It is just the best for her. It's very hard for me to force her to do anything she does not want to do, but it is very important to take care of her the way the Dr.'s and nurses say, they know more about this stuff than me. They only want the best for Carly and God knows I do too. I'm hoping Carly will have a better day tomorow, Too bad it will probably be because the chemo is getting to her and she is starting to feel sick. I'm off to bed now, keep us in your thoughts and prayers, Love Carly and Karen.
Wednesday, September 24, 2003 12:27 AM CDT Well, here we are, a few short days from Carly's return to the hospital for chemo and stem cell transplant. We are having a meeting with Dr. DeSantes on Friday morning and we will learn what we can expect in more detail. Time is going so fast right now. Not that I want it to slow down, We want to get all this over with and have Carly well again but what she is going to go through in the next couple of months isn't gonna be fun.
Carly is doing so well lately. She has been having fun, playing outside while the weather is still nice. We went to the pumpkin patch last Sunday and we all had a blast.
We are almost through with the whole schedule of tests that Carly had to do. Wow, what a busy time. It seemed like everyday we were up and out of the house to the hospital. Carly did really well considering all she had to endure. One result we got was on her menal development. We are happy to announce that we have a genius in the family. She ranked 84hich is the high average range for her age!!!! GO CARLY!!!
Thankfully we only have a couple of visits left so things seem a lot more relaxed now.
Now I am getting ready to pack up for a six week stay at the hospital with her. I want to make her room at the hospital more cozy and fun. I have gotten a lamp and I am going to have curtains made from Dora the Explorer sheets and other cute stuff. Hopefully that will cheer her up during this time. It won't be so drab and hospital like.
I am going to get the results from all of Carly's tests on Friday when we meet with Dr. DeSantes about the whole transplant process. I will update the journal then to let everyone know her test results and what to expect during the next 6 - 8 weeks.
So, bye for now. Keep praying for Carly and all the little ones who go through this stuff. It just isn't fair that little children suffer like this. Hug your kids everyday. They are such a blessing.
Love, Carly, Karen, Chuck, Kaylee and Alicia!!!!!!
Thursday, September 11, 2003 9:46 PM CDT Carly ended up back in the hospital on Monday, We had gone up for a platlet transfusion and during it she spiked a fever, up to 104.5 they were not sure if it was a reaction to the transfusion or an infection, so they had to admit her and run some cultures to be sure. She has really lucked out in the past by never getting an infection when her counts were so low, but not this time. Her cultures grew a bug called Grahm negitave, so they started giving her antibiotics to fight it. She must have just started getting it last week when we were up here but it did'nt show up yet. She kept getting fevers through out the day Tuesday and the last one was at 12:00 am Wednesday. They are continuing to give her antibiotics and if she has no fever for 48 hours we should be able to go home. So that means at 12:00am I'm out of here. Not really, I guess i'll wait till the morning. I also got her schedule for her transplant, she has a lot of tests to go through first. She was to be admited for the transplant on Sept. 24th but because of this infection they had to move a few tests around. Here it is the schedule:
September 15th
8:00 am injection for Bone Scan
11:00am Bone Scan
1:00pm injection for MIBG Scan
September 16th
11:00am Echocardiogram
2:00pm MIBG Scan
September 17th
1:00pm MIBG Scan
September 18th
11:30 am Arival for contrast intake
12:30pm Cat Scan
1:30pm MIBG Scan
September 25th
8:00am hydration, pre GFR
9:00am injection for GFR test
10:00 Blood Draw
12:00pm Blood Draw
September 26th
9:00am informed Consent Conference with Dr. De Santes
2:30pm Audiogram
September 29th
10:00am Admit for Stem Cell Transplant
So there is alot going on for little Carly now, I sit a think about all that we have been through so far and how it has just become kind of normal, but with this Transplant it is like starting all over again, I don't really know what to expect. Carly has done so well with her Induction Chemo's and bounced right back after surgery, that I think we will just breeze through this. But she won't, This is really serious and Carly will get very sick. I just have to put my trust in God that he will bring her out of this hell and allow her to continue on with her blessed life.
It is so hard to be up here and see all the new kids come in, they are just starting their long road through this hell, and it breaks my heart. I met a family the other day whose son was just diagnosed with neuroblastoma, is is just 17 months old. She was asking me so many questions, just trying to understand this all, I tried to help her as best I could but it came down to there is no understanding this. What I am having trouble understanding is, how does a family go through all these treatments with their child, watching them get so sick, than finally reaching the end of treatment with the excitement of getting on with the rest of their lives, and end up having a relapse. Emma, a very bright, talanted and fast (you should see her run the halls) little 4 year old, whose mom and I have become close during our stays up here has just relapsed. She has AML Leukima, in a way I think that what they are going through now has to be worst than finding out the first time, you think you got this thing beat and it comes back. Please keep Emma and her Mom Rae in your prayers, God will see us all through this.
Love Carly and Karen
Thursday, September 4, 2003 10:04 PM CDT Well before I had a chance to write that we were home, we are back up her again. Yesterday, and ever since we got home Sunday evening she has been just fine, but around 4:00 she was tired and just wanted to lay in Mommy and Daddy's bed and watch a movie. I went to get her for dinner but she did'nt want anything so I just let her be. While we were eating I heard her crying, I went in and she was complaining about her tummy hurting, she has had no nausea so I was not sure what it was, I would try to touch her tummy but she would just scream. Chuck and I thought we should call the Dr. and see what they think. Dr. Puccetti thought it would be best if Carly came in so they could take a look at her. So off we went. On the way there I would ask her if her tummy was still hurting and she would say no, so I was starting to think maybe she was just having a moment or was just tired and I was jumping the gun, but, 2 blocks from the hospital she threw up all over her blanket (and some of the van) so there was something going on, but what. We got up there and into a room and the nurses started getting her all settled in, she was not running a fever, so they took blood to run the cultures, they also were concerned about her heart rate, it was up in the 160's and should be around 120. They got a x-ray to see if they could see anything. the cultures came back fine, they did'nt see anything alarming on the x-ray and still no fever, Carly was very clammy and sweaty Dr. Puccetti was with us untill 11:45 last night, she was just stumped as to what was causing her so much pain. Dr. Puccetti ordered the usual antibotics and got them started. We just let her sleep. This morning Carly just wanted to lay in my lap all the time, NO PROBLEM!!! I just love that, we watched TV and on the Out of the Box show the craft was a parachute made out of a dixie cup and tissue Carly thought that was so cool so we made that, watched a few movies and just took it easy. She was not eating or drinking, but seemed to be feeling a little better. They took her downstairs to get another x-ray, that still seemed clear. So we have just been taking it easy, they said we will probably go home tommorow.
So that is just about it, one of the nursing assistants and me just ordered a pizza so we are going to go eat now, will write more later
Tuesday, September 2, 2003 7:50 AM CDT We have made it through yet another chemo, but this was a milestone for us, it was Carly's last induction chemo. We have only one more chemo to go, however it is her transplant chemo and will be a big one. She will be going to the hospital in the next couple of weeks to have some tests done to make sure her little body can handle the whole transplant process. She will be having a MIBG scan, that is where they inject her with some kind of raidoactive stuff that makes neuroblastoma cells glow then they take a x-ray kind of and can see how much is left. She will have a bone scan also, she had one before and it was clean, so I'm not too worried about that. She will have a audiogram and a GFR test because the chemo is hard on the hearing and kidneys. They want all these tests done within 4 week of transplant, so when ever we do the first test, transplant will be just around the corner. Can't wait to talk to Dr. De Santes about the transplant. I have so many questions.
Take care everyone, Love Carly and Family.
Wednesday, August 27, 2003 11:05 PM CDT We have been home just 10 short days and it's already time to go back. Carly is going in for her 6th chemo on Thursday. As much as I want to get this all over with, it is so hard to take her back up there. With having gone through the surgery and the pain she experienced last time how do I make her understand that it won't happen again. How do I get her to understand any of this. Every time we leave the hospital I don't have the heart to tell her that we have to go back soon, I just want her to be happy at home. It's like when we are at home she is feeling great and then I take her up to the hospital and she get's "hooked up" feels like crap, has people poking and proding her all day, and is away from her sisters and daddy. How can I even complain, God has seen her through this far and will continue to take care of her, there are family's out there who's child has not done as well and would give anything to be able to make one more trip to the hospital to fight this monster.
I'm hoping to start getting some information on the Transplant when I am up there, there will be a lot of tests Carly will have to go through to make sure she can withstand the large chemo treatment she will be getting. I do know that as soon as her counts recover she will go in for it, as I have said before it has been taking a little longer each time for her counts to come up but it will be here before we know it.
So here we go again, keep us and all the children in your prayers. Love to all, Carly and Karen
Wednesday, August 20, 2003 9:32 AM CDT WE'RE HOME!!!!
Carly in doing really well, the doctors are very happy with how fast she bounced back. I got to talk with Dr. Lund before we left and found out the pathology report on the tumors. Seems the big tumor was still active Neuroblastoma, but the margins of it were all clean. If you think of the tumor as like a apple, the flesh of it is the tumor and the skin is the margin, so the whole tumor had a clean skin meaning the tumor was taken out with no Neuroblastoma left in her. She also had six lympthnodes removed that had Neuroblastoma and all but one was positive for Neuroblastoma, they just took the whole node so there are no more tumors at all in Carly. There still is Neuroblastoma cells floting around, but I'm so positive that what treatments she still has to go through will take care of them. The Dr. agrees because he said that chemo does really good a killing single cells but has a harder time with tumors, so the fact that Carlys tumor has shrunk so much, means she really responds well to chemo.
We will go see Dr. Lund in two weeks for a post op. then he will give the ok for the sixth chemo.
POWER OF PRAYER!!!!!!!!
THANK YOU. KAREN, CARLY AND FAMILY
Saturday, August 16, 2003 6:34 PM CDT After all the trouble we had with Carly's ng tube falling out and me not wanting to put it back in because of how much she hates it, they clamped it off Friday morning and took it out all together by 1:00. They just wanted to make sure she could handle the acid in her tummy and not throw up, she did'nt. Carly was also able to have the blood preasure cathader removed from her wrist and the other IV they put in her other hand.
I got to tell you what just happened. Chuck, Alicia and Kaylee just came up to see us, well Carly is sleeping so I was out here writing the journal. We were all just sitting out in the little family room and Kaylee was on my lap, she was wearing a dress and I noticed on her leg a red mark. I looked closer and saw that it also had a ring around the red mark, you know how you always hear about a bullseye mark, I asked Chuck what he thought, he said maybe Lymes. Well I jumped right up and went up to the nurses station to have them take a look, they were not sure, some were saying ring worm, some a spider or bug bite. One nurse went and got a med student and he was not too sure either, asked if she had a fever or if it was itchey, he was just not sure what it could be and said to maybe see our Dr. tomorow. So kind of freaked out we went back to sit down, well Rachel one of the nurses comes down here by us with one of the pediatric Residents for him to take a look, he asked some more questions like if she had been in the woods, well Kaylee had gone to the zoo with Aunt Carol yesterday and was in the petting area, It could be something from there, he asked if Alicia or Chuck had been sick and Alicia told him about her sore throat she had back when she went to Kentucky, he just said to watch for a fever or if she has any aches in her joints, and told us to just keep an eye on it too. He also said that with not knowing what it was and Alicia's sore throat that it was probably not a good idea to be down in this area with all the kids, because some of them are very low on counts and if anything was contagous it could be bad for the kids, I felt awfull, I did'nt think of that, We all jumped right up and got off the ward. I told Chuck to just take the kids and go home. Can you beleive it! i'm sure it's nothing but you know it's all i need to have something be wrong with her. Well I saw them off and came back to finish this journal and there was Kate, one of the nurses spraying off the couches where we were sitting, just to be on the safe side. I really felt bad.
Back to Carly. She still has the epidermal in and the foley cathader. with the epidermal in, her insides are still moving a little slow so they still did not allow any food or drink yet, she would ask for something to eat and it was so hard to tell her no. We just had to get her up as much as we could to get things moving around in side, she did go poopy this morning so it was starting. She would take a few steps, with me holding her up, to her wagon where we would go for a little walk around the ward. I thought by last night they would allow at least liquids but nooooooooooooooooo.
Today she woke up asking for food, Carly had a couple burger king hash brown rounds on our way up her Tuesday, and nothing since. she has gone four days of not eating. I thought we would be able to start slowly with food and drink today but when the Doctors came in for rounds he said only liquids today. I just about jumped him. They did start IV nutrition last night so she won't starve but when your child is hungry it breaks your heart.
Today around noon they turned off her epidermal to see how she could handle the pain, they did not take it out just in case the oral meds and morphine did'nt do the trick. They started her off with some tylenol with codine along with the usual doses of morphine, we got her up for a walk and she still seemed to hurt alot. We went for a wagon ride and when we got back she did not want to get out of the wagon, I think she did'nt want to be picked up because it hurt so she just sat in the wagon and watched movies, we finaly got her back in bed but she just was not tired and did not have a nap all day. she finaly just fell asleap around 6:00. A Dr. came up and was going to pull out her epidermal but I told him no because I know how much she hates having tape removed from her and her whole back is taped to keep the wire in place, so as much as I hated to leave it in I told him to wait till tomorow.
Thats about it for today, Thanks for everything
love Karen and Carly
Friday, August 15, 2003 11:49 AM CDT Well, we've been here a couple days now and a lot of stuff has happened. Boy, oh Boy, what a couple of days we have had!!!
We got here on Tuesday morning at about 10;30 to get all ready for surgery. All the way here Carly kept saying, 'We're gonna go right home, right? With all our time we had at home, it was so hard to come back. Getting her ready for sugery included putting in the ng tube. That is the tube that goes down her nose into her tummy. She hates that so much but they needed it there for the medicine to make her poop and completely clean out her insides. With Carly's history of being able to hold her poopy for so long, she was able to hold an incredible amount of the medicine. The medicine is called go-litely. The doctors give it to patients who are going to have a colonoscopy. It is much stronger than it sounds. you don't really go lightly. After that, there was a lot of waiting around. Carly couldn't eat anything, in fact it is now Friday morning and she hasn't eaten a thing since Tueaday morning. Dr. lund said she wouldn't be able to eat until Saturday morning.
Here is the scoop on the surgery.
Doctor lund came into our room sometime during the morning and did a brief explanation of the surgery. he told us again how the main tumor was very close to the main artery to the heart. he said that it would be extremely delicate and they would need to go really slow. he said that there was a possibility of cutting the artery and causing bleeding. he was concerned about that and reassured us that there would be plenty of blood on hand for her, if necessary. As with any surgery, even toncils there is a possibility of death, when he was talking about this surgery, as serious as it was, i didn't even want to hear any of that. it made it very real.
it was supposed to be at 10;30 a.m. but we didn't get down to the operating room until 11;30. The first thing they did was the bone marrow biopsy. They did it about a month ago and it came back clean. This was just another check-up to make sure that the marrow was still cancer free. They also put in an epidural. They put a blood pressure cathedar in the artery of one of her wrists. A second iv in the other hand. They put in a foley cathedar for her urine and a larger ng but to keep her stomach clean from the bile. This stuff all took about an hour. They came up to the waiting room at 1;00 and said that they hadn't even started the surgery yet but they were just starting to make the incision. The waiting is excruciating!.
one of the doctors said that she would keep us informed and come up about every hour to let us know how it was going.
They didn't come back until 3;30 for the next update. They gave us good news. Dr. lund thinks he can get it all. it took a lot of time and delicate work to get the big tumor off the arterys and other organs but he was successful. it was still the size of an orange. most of the surgery revolved around the big tumor. The other little tumors were not as difficult and he said he got all the cancer he could see. he did say that if any cancer cells escaped he was confident that the last chemo and the transplant chemo would take care of those.
knowing what we know about neuroblastoma, it is so unbelievable to hear him say those words. 'i got it all'.
There are no more beautiful words on this earth than that!!!
The first time Chuck and i got to see her was around 5;30 p.m. We got to stay with her in recovery for about 1/2 hour then we took her up to the picu. She was so beautiful. just to see my baby lying there helpless like that was heart wrenching. As sad as i was to see that little angel like that i knew that horrible monster was out of her and that all of it was for the best. To give her life.
During the first night, they watched her so closely. her blood pressure dropped and they gave her some fluids to help that, then it steadied that problem. She also was running a fever, up and down, they gave her tylenol for that. All in all she slept pretty well.
All day Thursday she slept off and on. she would wake up to make sure i was still there then just drift off to sleep again.
By last night she was waking up a little more. We got her to just sit up in bed because she couldn't lay so much. She could get pneumonia from laying all the time so we had to sit her up last night. her nose tube fell out while we were having her sit up. This was a bummer because they had to put it back in. i had to leave because i couldn't even watch that. She hates it so much. She finally fell asleep.
more about today later!!
Wednesday, August 13, 2003 9:14 PM CDT PRAISE THE LORD!!!!!!
Carly's surgery was a success, I'm exausted, will fill you all in tomorow.
THANK YOU ALL FOR ALL THE PRAYERS!!!!!! BUT DON'T STOP!!
Saturday, August 9, 2003 10:44 AM CDT I talked with Dr. Lund and Carly's surgery will be on Wednesday instead of Monday, He has another long surgery on Monday and doing Carly's too would be too much, fine by me, I want him well rested. Turns out Carly's surgery won't go a smoothly as I thought. While we were looking at the scan of Carly's tumor Dr. Lund was showing me all these other areas of tumors, I thought that Carly only had one tumor. So when I got home I called Chris, the nurse practioner, and asked her about it. She said that there was only one tumor but it grows tenticals and to think of it as kind of like an octopus, all I ever heard of about the tumor was that it was softball size or now egg size, so that is what I was imanaged a softball or egg, I thought he could go right in and scoop it out. Dr. Lund say's these tentical areas of the tumor will be hard to get to, they are right next to major blood vessels that go to the kidneys and in her lymph nodes. He is going to try to get as much as he can. I asked Dr. Lund how big of an incision there will be and he said it will be from one side of her to the next, they have to open her up so much so that they can see everywhere. My poor baby. We are all hoping Carly's blood counts are way up because then they can give her a epidermal, they will leave it in for 3 or 4 days. Me and Carly have to go up to the hospital on Tuesday because there is a of prep she has to go through. They need to have her insides all cleaned out so she will have to have another nose tube put in to give her this stuff called Go Lightly. After the surgery Carly will go right to the intensive care unit. She will probably be in the hospital about a week. As soon as she is recovered enough she will have her 6th and final induction chemotherapy. When her counts recover from that one it is right on to the transplant, but I don't even want to think about that now.
Every since after Carly's 3rd chemo I have not taken her out anywhere but to the hospital for transfusions or the clinic to draw blood. With all the trips to the hospital between chemos because of infections or whatever I just did not want to take any chances. So now with Carly's counts comming up I want her to have as much fun before this surgery as any 3 year old should. So last night we all went to Chuck E Cheeses. Grandpa Ron and Grandma Becky came along, we had a blast. Today when Daddy gets off work we are going to go to see Finding Nemo, The girs have never seen a movie on the big screen, it should be a lot of fun. Tomorow we are going to go to New Crossing Church where I hope everyone will surrond Carly and pray for her. Tracie and her family are up camping this weekend but are comming back for church, We all might go spend the day with them up at their campsite if Carly is feeling up to it, she still get tired easy. Tracie will be having her 2nd round of chemo on Tuesday, it was susposed to be last Thursday, but she changed it to Tuesday when we thought Carly's surgery was going to be on Monday, she did not want to be sick for it. So now she will be feeling sick, but nothing will keep Tracie away from Carly.
Alicia had a great time on her mission trip to Kentucky, she made new friends but more importantly she was able to help out those less fortunate then her, I think she appreciates things more now. It was really good for her to get away from all this crazyness, and just relax but only a little, she really worked her butt off. Chuck Alicia and I went to Great America last Monday while Grandma Joann watched the girls it was nice to get away too. Kaylee is doing great, boy that kid has energy!! She talks and moves non stop, but I love it.
Thank you all again for all your thoughts and prayers.
Love, Carly and Karen
Monday, August 4, 2003 9:40 PM CDT I'm so sorry for not updating this page sooner, I know a lot of you have been waiting to hear about Carly's scan. Well, I have not talked to Dr. Lund, the surgon, but Dr. Puccetti has and told us he thought it looked like it was calcified, which is a good sign because that means it is dying, It is also about the size of an egg now. It used to be softball size. The only discouraging thing he said was that he was not sure if he could get it all. They are just not sure what it is attached to because they can't see the back side. We will know so much more after the surgery, He just needs to get in there and see what is going on. I just want that thing out of my baby.
Carly's treatments are really catching up to her, her counts don't come back up as fast as they used to and she continues to have a real hard time with her bowel movements. I believe she has sores up inside and the outside is all raw with blisters. She holds her BM because it hurts so bad to go, but can only hold it for so long and a little comes out at a time so I'm literally changing her diaper every hour, and that does not help because it is excruciating to her to be wiped, It takes two people to do it most times.
I took carly in for her labs today and it turns out she needs another platlet transfusion, so it's back up to the big doctor tomorow morning. Keep Carly in your prayers as we count down to her surgery. Love to all, Karen and Carly.
Wednesday, July 30, 2003 8:05 AM CDT Things have been going pretty good this last week. Carly has been tired alot, but I think that is due to her low blood counts. I always dread checking Carly's temp. because if she has a fever it could mean an infection, well, I just checked it and it was 100.4, which really means 101.4, so I called Chris to for warn her, we are going in for her cat scan today at 12:45 to check the size and location of the tumor, and possibly have a platlet transfusion, we will check her temp again there, please, please, please hope we won't have to stay. I hope to talk to Dr. Lund also today, he is the Dr. who will do Carly's surgery.
I'd like to tell you all about my dear sister Tracie. Growing up we had our share of problems, as most siblings do, but I always looked up to her. After our mother passed away Tracie really showed me what it meant to have family. I had just become a mom to Alicia, and was not with the father. I was working all the time to make ends meet and I could always count on Tracie to help me out with Alicia. No matter how stupid, selfish or childish I was Tracie was always there to set me straight, I thank God everyday she never gave up on me. When the twins were born Tracie was the happiest Aunt in the world. Once again I knew I could count on her. When we found out Carly was sick, It was Tracie who, with her strong faith in God, helped me understand that I needed to put my faith in God too and trust Him. I know I could not have made it throught these last months without her. Almost two weeks ago my life came crashing down again, Tracie was diagnosed with breast cancer. Now, I thought, was my chance to help her out, to comfort her, be there for her. But even with her going through the scariest thing in her life, she still was looking out for me. With all that I was going through she did'nt want to add anymore stress to my life, That is the kind of sister I am blessed to have. With both of us not knowing what our futures hold, one thing I do know is I can only hope to one day be as strong and loving as my sister, and have her be as proud of me as I am of her.
Wednesday, July 23, 2003 9:35 PM CDT It's good to be home again! We have just finished Carly's 5th chemo. Now it's on to the surgery, it is still set for Aug 11th. Let's all pray she stays home untill then.
Belive it or not our best times up at the hospital are when she is getting chemo, because it's then she can leave her room, when we are up for a fever we can't. This last time we really made use of the rec. room, they have different crafts each day. Carly painted a box, made a bead necklace, painted A LOT of pictures, played on the computer (one of her favorite things latley) and enjoyed time with the other kids. We also love to go exploring around the hospital, one of her favorite places is the water fountain down by the cafeteria, we go to the atrium and listen to the people play the grand paino or just go up and down the elevator (allegator as she calls it)
I have really enjoyed getting to know the other mom's. It's really helpfull to have someone who knows what the other is going through. When I first got there, there was not a one of them to busy to talk to me, to help calm my fears and remind me to take it a day at a time, now I find myself saying the same thing to new moms that come in.
On the bottom of Carly's page are links to other childrens web pages that are up at the hospital, please take some time to visit them, pray for them, and God Bless them all.
Tuesday, July 15, 2003 1:54 PM CDT Carly stayed up at the hospital untill Thursday. She was given a transfusion of platlets along with the usual anti-biotics. The Doctors were a little concerned with her breathing again so they took another x-ray to see if she might have pneumonia. It came back a little cloudy so they thought that giving her a nebulizer treatment might help. What they do is really quite simple, a mask is put over your face and you breath in medicine, kind of like getting oxygen. Carly did not like this at all. They were doing it every 4 hours, the mask was really cute it looked like a dinasour nose, we tried to convince her it was Barney but she did'nt buy it.
So like I said we came home on Thursday and have been just kind of laying low. We were to go in for the 5th chemo today, but her platlets were only at 28,000 and they have to be over 75,000, I asked why they don't just give her some platlets but I was told her body has to be able to make them on it's own. As happy as I am that we can stay home longer, I hate to get off the schedule. We did have to go up the the hospital today for a GFR test and a audiogram, The GFR test tests her kidneys and the audiogram is for her hearing, both might be damaged by the chemo drugs she is getting, so they want to keep a close eye on them.
Things are going to start going pretty fast now, Carly's surgery is schedule for August 11, my nephew Austin's birthday, She will have a Cat Scan on July 30th to measure the tumor and pin point the exact location so when Dr. Lund goes in he will know where to go. As soon as she is ready she will have her 6th and final induction chemotherapy. She will be half way through her protocol. Then comes the transplant, this is what I'm most scared about. I only know bits and pieces of it, we will have another meeting with Dr. De Santes to get more info a little later, I will pass it on then.
So now we will just hang out untill Thursday when we go get labs done again. Let's all pray her platlets go up. She will then hopefully start her 5th chemo on Friday.
Thank you all for your continued support and prayers, Carly and Family.
Saturday, July 5, 2003 9:42 AM CDT Hi everyone. Sorry it has been so long since I have updated everyone on Carly's progress. Carly did great after her third chemo treatment. That treatment was the one that lasted 4 days. She never got a fever, never got sick and she stayed out of the hospital until the fourth chemo treatment except for a trip to day treatment to get some blood. Other than that there was no inpatient stay or anything. Yeah Carly!!!!!
She went in on June 24 to begin her fourth chemo treatment. She did really well during it, however, she seemed to have pretty severe mood swings. One minute she would be so sweet and happy, the next minute she could be angry, upset, crying, etc. The nurse gave me a sheet on the drugs that she was getting in her chemo mixture. One of the drugs described side effects as mood swings so that totally explained it. So we spent from Tuesday morning until Friday night being happy one minute and then not being happy the next minute. Carly probably can't figure out what is going on either. Anyway, she got out of the hospital Friday night and her mood suddenly changed to complete happiness. Yeah!!
She had a pretty good weekend, however, she was running a low-grade fever pretty much the whole time. That was kind of wierd, she hasn't really had a fever for quite a while. On Monday morning we went to the "Little Doctor" which is what Carly calls the clinic where we go for labs. She got her blood drawn and when I got the results her blood counts had already dropped to practically zero. That happened in only two days. Normally it takes 7 to 10 days for her counts to bottom out but this time it only took two. I asked the doctor about this and she said that Carly is getting a little weaker because of all the chemo treatments and she may have a little more trouble bouncing back as easily as she has in the past.
Carly has always had a little trouble with her bowel movements. She has always seemed to struggle trying to go poopy. Since she has started the chemo treatments, this hasn't gotten any better. In fact, it has gotten much worse. She gets laxatives everyday to help things along but now she has sores "down there" on the inside and a very sort bottom on the outside. On Sunday I noticed a tiny amount of blood. Nothing big at all, just a tiny bit. I called the doctor on Monday morning because of her fever and they wanted us to come in because of her low counts and the fever concerned them. So off we were to the "Big Doctor" which is what Carly calls the hospital.
They hooked her up to antibiotics, gave her lots of fluids, gave her platlets and hemoglobin to help bring her blood counts up and there we were. If we wanted to leave her hospital room, Carly had to wear a mask. The doctor thinks that when she was trying to poop, she may have pushed so hard that she cause a small laceration in her rectum. Even a scratch can let bacteria into her bloodstream and with no white blood cells to fight the infection she really has no defense. The doctors were really concerned about this. They figured they would be keeping her until her counts went up and the infection was taken care of. That was thought to be about five to seven days because it usually takes that long for her counts to go up. Of course we have learned that there is no "usual" stuff in cancer.
Her blood counts actually started going up and she only had to spent three nights and four days in the hospital this time. We got to go home on Thursday night. She was very happy about that. She is so sick of the "Big Doctor".
We got home on Thursday night and we have been pretty much laying low. We didn't want to go anywhere or do much because she is still very suseptible to infection. Her counts are still very low but they are on the rise. We hung out at home until Saturday morning.
On Friday night I took her temperature at about 11:30 p.m. and it was 100.6 which is really 101.6. I called the doctor to see what to do and they told me to check her temp again in the morning and we will decide then what to do. So this morning I checked her temperature as soon as she woke up and it was 101.6 which is really 102.6. I called the doctor and guess what.....we are up at the hospital again. (I mean the "Big Doctor")
I don't know what is going on this time with her. It seems as though she is having a pretty tough time right now. I am waiting to see what the doctors say and then I will let everyone know.
Keep praying for Carly. She seems to be needing extra prayer right now and we know that God is bigger than this.
More later, as I get information.
Love, Karen
Saturday, July 5, 2003 9:42 AM CDT Hi everyone. Sorry it has been so long since I have updated everyone on Carly's progress. Carly did great after her third chemo treatment. That treatment was the one that lasted 4 days. She never got a fever, never got sick and she stayed out of the hospital until the fourth chemo treatment except for a trip to day treatment to get some blood. Other than that there was no inpatient stay or anything. Yeah Carly!!!!!
She went in on June 24 to begin her fourth chemo treatment. She did really well during it, however, she seemed to have pretty severe mood swings. One minute she would be so sweet and happy, the next minute she could be angry, upset, crying, etc. The nurse gave me a sheet on the drugs that she was getting in her chemo mixture. One of the drugs described side effects as mood swings so that totally explained it. So we spent from Tuesday morning until Friday night being happy one minute and then not being happy the next minute. Carly probably can't figure out what is going on either. Anyway, she got out of the hospital Friday night and her mood suddenly changed to complete happiness. Yeah!!
She had a pretty good weekend, however, she was running a low-grade fever pretty much the whole time. That was kind of wierd, she hasn't really had a fever for quite a while. On Monday morning we went to the "Little Doctor" which is what Carly calls the clinic where we go for labs. She got her blood drawn and when I got the results her blood counts had already dropped to practically zero. That happened in only two days. Normally it takes 7 to 10 days for her counts to bottom out but this time it only took two. I asked the doctor about this and she said that Carly is getting a little weaker because of all the chemo treatments and she may have a little more trouble bouncing back as easily as she has in the past.
Carly has always had a little trouble with her bowel movements. She has always seemed to struggle trying to go poopy. Since she has started the chemo treatments, this hasn't gotten any better. In fact, it has gotten much worse. She gets laxatives everyday to help things along but now she has sores "down there" on the inside and a very sort bottom on the outside. On Sunday I noticed a tiny amount of blood. Nothing big at all, just a tiny bit. I called the doctor on Monday morning because of her fever and they wanted us to come in because of her low counts and the fever concerned them. So off we were to the "Big Doctor" which is what Carly calls the hospital.
They hooked her up to antibiotics, gave her lots of fluids, gave her platlets and hemoglobin to help bring her blood counts up and there we were. If we wanted to leave her hospital room, Carly had to wear a mask. The doctor thinks that when she was trying to poop, she may have pushed so hard that she cause a small laceration in her rectum. Even a scratch can let bacteria into her bloodstream and with no white blood cells to fight the infection she really has no defense. The doctors were really concerned about this. They figured they would be keeping her until her counts went up and the infection was taken care of. That was thought to be about five to seven days because it usually takes that long for her counts to go up. Of course we have learned that there is no "usual" stuff in cancer.
Her blood counts actually started going up and she only had to spent three nights and four days in the hospital this time. We got to go home on Thursday night. She was very happy about that. She is so sick of the "Big Doctor".
We got home on Thursday night and we have been pretty much laying low. We didn't want to go anywhere or do much because she is still very suseptible to infection. Her counts are still very low but they are on the rise. We hung out at home until Saturday morning.
On Friday night I took her temperature at about 11:30 p.m. and it was 100.6 which is really 101.6. I called the doctor to see what to do and they told me to check her temp again in the morning and we will decide then what to do. So this morning I checked her temperature as soon as she woke up and it was 101.6 which is really 102.6. I called the doctor and guess what.....we are up at the hospital again. (I mean the "Big Doctor")
I don't know what is going on this time with her. It seems as though she is having a pretty tough time right now. I am waiting to see what the doctors say and then I will let everyone know.
Keep praying for Carly. She seems to be needing extra prayer right now and we know that God is bigger than this.
More later, as I get information.
Love, Karen
Thursday, June 19, 2003 10:02 PM CDT As much as we wish we could thank everyone personally, it is just simply not possible. The outpouring of support, whether it is food, cleaning, gifts for the girls, childcare or just the thousands of thoughts and prayers for Carly have been more than we could have ever imaged. Saying thank you doesn't even come close to expressing how much we appreciate everything that has been done for us during this trying time.
Carly is truly a remarkable little girl. For any child to be stricken with a disease like this, to have gone through all that she has so far, and the uncertainty of what lies ahead for us is just unspeakable.
The courage Carly has shown so far only confirms that our Lord is and will continue to cradle her in His loving arms.
Thank You!
The Le Grande family,
Chuck, Karen, Alicia,
Carly and Kaylee
Monday, June 16, 2003 9:37 PM CDT We have been so lucky to have had so much time home in between the chemo treatments, but we had a little bump in the road today. I took Carly in for her lab counts and when Chris called to give them to me she asked if Carly was brusing. I did notice a pencil eraser size bruse on her knee but really thought nothing of it. She said Carly needed platlets and blood and to get up the the hospital by 2:00 or we would have to spend the night, it was 1:20 and I had just put the girls down for their nap. So I got Carly right up and off we went. It was a pretty uneventfull day we just sat around watching Barney of course.
Everyday seems to get a little bit eaiser taking care of Carly. I really got her oral meds down good, and drawing up the GCSF and giving it to her in her lines is going good too. Her lines, that she calls "tubbies" are still a hard area to deal with. She needs the bandage changed every three days, and it hurts her alot. I also have to flush her tubbies every day and that is not much better, it does not hurt, but I think she is afraid it will pull and that hurts. So I just try to be as carfull and understanding as I can.
Her next chemo is on Tuesday the 24th. Please keep us in your prayers to stay home untill then.
Love, Carly and Family
Tuesday, June 10, 2003 3:43 PM CDT I just want everyone to know how well Carly is doing now. We have been enjoying our time together as a family. We made it to church on Sunday, Then Tracie and her family came over for dinner. Monday I took Carly in for her labs, they came back still in the normal range, they should start falling middle of this week, then we will have to be extra careful Our next lab is on Thursday. Today Tracie, Carly, Kaylee and I went to see Great Grandma and aunt Joann. God bless all of you for all your prayers.
Love, Carly and Family
Sunday, June 8, 2003 8:13 PM CDT More good news about Carly. Her stem cells were clean. No cancer was detected. That is the best news. If there was cancer in them, Carly would have had to go through shots everyday again and go through another stem cell harvest which involves anesthesia and a lot of discomfort. It is just wonderful that it all went well the first time. As you know Carly did awesome during the last round of chemo. Even though the doctors said it would be harder on her tummy, she didn't seem bothered by it. Now we are home, hey hey hey. She didn't get sick at all during the chemo but the doctors said that she might get nauseated during the next couple of days. I have some nausea medicine that I can give her and so far she hasn't thrown up. She hasn't eaten much and has said that her tummy hurts but not anything too extreme. So all in all she is doing really well. She has been playing with Kaylee but is rather low-key compared to "normal". She has been getting tired a lot more often. I can tell that she has problems with low energy. She really is happy just cuddling, watching movies and just laying around. I know that she has always been a cuddler but I am looking forward to the energetic Carly that she used to be and I know that time will come again. I think back on how she didn't ever really run fast, and she couldn't jump. You would ask her to jump and she just didn't really jump. Kaylee jumped all over the place. At the time you look at it like normal kids who develop differently. I guess hindsight is 20/20. It may have been because of the horrible tumor growing inside her. Now I am looking forward to the day when she will give Kaylee a run for her money. We went to Door Creek Church today. Everyone at Door Creek has gone above and beyond. We get meals, yard work, and moral support from many people, especially my new friend, Trisha. I just want to thank everyone for all they have done. We don't even know a lot of the people who are doing stuff for us. Last week we went to
St. Stephens Church. Before Chuck and I got married I went to St. Stephens. Chuck and I were married there and the twins were baptized there. Jo Anderson a wonderful person has been my contact at St. Stephens. She has done so much and again more people than we even know have helped us out. I wish the words "thank you" could really describe the thanks that we feel for all those who help us out.
I would like everyone to know what Carly is like these days. She really is struggling with all this. No child should have to go through all that she is going through. One day she is jumping up and down on the bed in our camper that we just bought, singing "Down on Grandpa's Farm" with Tracie as we were planning our first camping trip and the next night her world changed completely. She gets really frustrated easily. She does not like to hear anyone even talk about her. She sort of turns away or hides under her blanket. Kind of like if we don't see her, if she stays really quiet we won't talk about her. She is very aware of everything that goes on around her. She is very aware that she is the center of attention. People love her so much and are so happy to see her and she smiles at first but then just wants to be left alone to be a kid. She hates people talking about or touching her tubies, ( the hickman in her chest). She is just sick of the hospital, doctors, just everything in general that has to do with her illness. On the other hand if anyone comes to visit her, she may not be willing to be the "center of attention" but if you try to leave and go home or wherever, that is unacceptable to her. She gets so up set when anyone has to go bye-bye. It is really hard to leave her.
However, she is the most precious angel and just wants to be loved, cuddled, pampered and she wants to feel good. She is so sweet. Has a smile that would melt a glacier and truly has the warmest heart as well. You can see the old Carly the minute you walk into her hospital room or into the house but then it's like reality hits her little mind and she gets nervous.
That is now, but with the love from everyone, she will get through all this and will be as sweet and loving as ever.
Just pray for her. She is precious and sweet!!!!!!!
Friday, June 6, 2003 1:43 PM CDT Everything has been going great! We got here at 7:am on Tuesday because they wanted to do a GFR test, it is to see how her kidneys are because one of the chemos is very hard on them. What they do is inject a raidoactive material into her than wait 1 hour and test her blood to see how the kidneys are removing the toxic material, they also had to test again after 2 hours, so there was a lot of waiting around, Turns out her kidneys are perfect, just like her!! The F4 wing were we usually are admitted to is under reconstruction so we were lucky enough to get one of the PICU rooms, which are about twice the size. Once we got into our room they have to do about an hour of hidration on her, finaly around 5:00pm we were able to start the chemo. This time is different than the last 2. There are only 2 kinds of chemo this time, one is called VP-16 that is given for 2 hours, than 1 hour of Cisplatin, Cisplatin is the one they say is really hard on the kidneys and the stomach, most people get really sick, But not my Carly, she has not even had a stomach ache. Sometimes I get thinking that things are going too well and something will come crashing down and she will get really sick or something. But I have to just take it day by day and thank God for every day she feels good. So she is only hooked up to chemo for 3 hours each day, but after they unhook the chemo they have to flush a medicine through her to get it out of her system this takes 6-8 hours. So much fluid is pumped into her to get the chemo out of her body that she has to have her diaper changed every 2 hours. So during the days we have been having fun watching Barney, painting, going for walks, singing anything to pass the time. Tracie and Hannah came up yesterday and stayed with Carly while I went home to be with Kaylee and Alicia, Daddy also came up to see her. Today, again we are just kind of passing the time with movies and walking around the hospital, we went into the gift shop to get a balloon, Tracie, Carly and me were down at the gift shop the other day and there were these puppets of animals that made the animal sounds, I really wanted to get her one (I have been having this problem of getting her anything she wants) But with money tight I had to say no, or maybe it was Tracie saying no, anyway along comes an employee and gives her the doggie one, She was so happy. The kindness of strangers has been so amazing. Well Carly should be waking up soon and I want to be there so hope everything continues to go well for us and we can spend the whole 2 weeks home before we have to come back up. Love to all, Carly and Family.
Friday, May 30, 2003 10:02 PM CDT NO TUMOR CELLS FOUND IN THE BONE MARROW!!!!!
I just can't get those words out of my head. All our prayers are being answered, but Carly still has a very long way to go so please keep them comming. There are new pictures on this page so please look at them. I probably wont be entering another journal until after we are back in the hospital (tuesday) because I am going to be enjoying every waking moment with Carly and my family. love to all of you!! Carly and Family
Friday, May 30, 2003 4:06 PM CDT Well, today this was a rather nerve-racking day. I knew that we were going to get a call from Dr. Puccetti regarding the results of Carly's bone marrow biopsy. I was just anxious and worried a lot of the day. Anyway, I asked Tracie if she wanted to come over and wait for the phone call with me. She said she would. When Tracie, Austin and Hannah got here I decided that we needed some ice cream. So Alicia, Carly and Kaylee and I went to Culvers, and got some ice cream for all of us. When we got back home, I asked Tracie if Dr. Puccetti called and she said no. Then next thing I know, Carly handed me a note. I read it and it said: DEAR MOMMY: DR. PUCCETTI CALLED. I WANT YOU TO KNOW THAT THERE ARE NO SIGNS OF TUMOR CELLS IN MY BONE MARROW. THEY WILL BE DOING ANOTHER BIOPSY CLOSER TO THE TRANSPLANT BUT THAT IS NORMAL PROCEDURE. I LOVE YOU...CARLY!!!!
Is that the best news ever!!!!!! We are going to celebrate this weekend for sure. On Sunday after church we will be going to the zoo with Paul, Tracie, Austin and Hannah. Hopefully Amanda and Mike will be able to come too. I wish Chloe was here as well.
CARLY SAYS: KEEP PRAYING FOR ME. GOD IS LOOKING OUT FOR ME AND I THANK HIM!!! AMEN!!!
Thursday, May 29, 2003 10:17 PM CDT Carly's collection of her stem cells went really well. We had to start a little later than we wanted to, around 12:00 they had to make sure they had enough stem cells so it ended up taking 5 hours so that made it 5:00 and the people in the lab were wanting to go home, we talked them into staying because we could'nt go home until the lab said we had enough. Than we got a call that one of the machines was not working right, something about changing the settings on one of them so they could not configure the two, they finaly got it and we were able to leave around 8:00, I really dont care what time it was I was just glad to be going home! They also did the bone marrow biopsy, I was to get the results today but Dr. Puccitti was not there, she will be in on friday and I will find out then, more waiting! I am really trying to make the most of Carly's time home, We went a saw Great Grandma and Grandma Joann, Grandma Becky and Grandpa Ron came over with presents and bannana bread, yum, yum. I am planing a trip to the zoo, Carly really loves it there, Just anything she wants. We are planning to go back up on Tuesday for her Chemo, we thought it was going to be Monday so I'm happy to get an extra day, They are also going to give her a test to check out her kidneys because this round of chemo has a new drug that is hard on the kidneys, so the just want to make sure she can handle it. So thats about it for now, Be sure to check the photo album I have some new pictures to show off, My good friend Lisamarie has been scaning the pictures for me and she is also the MOM's newletter editor and has another artical in the newsletter about Carly, What would we do without ALL OF YOU!!!!!! Love, Carly and Family
Monday, May 26, 2003 10:30 PM CDT Tomorrow is going to be a big day for Carly. The doctors decided that the time is right all her counts are going up and her stem cells are ready to be collected. She has had a fun weekend. Really feeling better than she has for a while. Daddy and Carly toured the hospital, Carly leading the way. She has been leading the way a lot lately. Anyway, tomorrow is going to be a totally different and unpleasant day for Carly. They are going to harvest her stem cells. That is going to involve putting her to sleep and inserting a catheder in her groin area in order to hook her up to the pheresis machine which will actually take her blood out, separate the stem cells and then put the rest of her blood back in. At the same time that they have her sleeping along with putting in the catheder they will be doing the bone marrow biopsy. We are praying that it comes back clean. We have confidence it will. Her tumor is shrinking, there is no reason at this time to think that her bone marrow isn't improving as well. So tomorrow is a big day. Hopefully they will get all the stem cells they need so we can go home tomorrow afternoon or night, whenever they say. We are hoping that this just goes like clockwork because we really want to be out of here tomorrow night. Hopefully Carly will bounce back really fast from this because we have less than one precious week to have fun and do stuff before she is due back (next monday) for the start of her next chemo treatment. This one is going to be a long one, about 4 days instead of 3. Also, this is her third round of chemo, that brings us halfway through the first half of her ordeal. For family and friends who live near us, please, if you can, give us a call and come by to see us. Carly would love it!!! She has really been isolated a lot and she needs to see people who love her. Thanks for praying. Keep it up. All our love.... Carly and family.
Friday, May 23, 2003 8:35 PM CDT Boy, what a difference a day makes. Just when we thought we might be going home, everything just seemed to come crashing down, first her temp kept going up, and her counts kept going down. The doctors were also concerned she might be getting pneumonia so they wanted her to have an x-ray, It is so nice that they can bring the x-ray up to the room because she hated to be moved. The x-ray came back clean, we were so releived! Her platelet count was really low too so they gave her a transfusion. Carly also had a echocardiogram, not because they thought anything was wrong with her heart, it's just so when she is all done with her treatments they will do another to see if any damage has been done, A couple of weeks ago she had a audiogram for her hearing, one of the chemo meds might effect her hearing, they will check that again later too. anyway Carly just spent all day in bed watching Barney, she really loves him. now today we had another big scare, her hemoglobin was really low again and they were concerned that the tumor was bleeding again, The doctors decided to give her a transfusion of packed red blood cells, boy does that ever do the trick, she got some energy back so I went down to the play room and got some paint that we can use to paint the windows, Carly did a great job, I got pictures and will post them as soon as I can. There was still talk about the possability of her her tumor bleading so the doctors were talking to the surgons and they wanted to do another CT scan, I was really upset about that because of the last one and how she got so up set and the thought of her getting another NG tube to get the contrast. She received another transfusion of packed red blood, they decided to wait 24 or so hours and just keep a eye on her blood and hold off on the ct scan, I was quite releived. Carly also has not eaten since we got here, so she has been getting some nutrition through her IV, She seems to be handeling it well. Alicia, Kaylee and Amanada all came up to see us and we did some more painting, She loved seeing her sisters and cousin. I dont know what I would do without Amanada, she has been staying at our house overnight when ever me and Carly are up here because of Chuck leaving for work at 1:00 am. Once again I have to say thank you to everyone for all you do for us.
well she is resting comfortably now watching Dora.
Love, Carly and Family
Wednesday, May 21, 2003 9:27 PM CDT Well, here we are again. Monday night Carly had a fever of about 99 degrees under the arm which is really 100 degrees so we knew something was up with her. I really watched her closely and when Chuck got up to go to work at 12;30 A.M. I had him wake me up so I could take her temperature again. It had gone up two tenths of a degree. When we woke up in the morning, the same thing, it went up another two tenths of a degree. As the morning went on, it inched up a little at a time. Finally at lunchtime I really felt that I should call the hospital. I just didn't want things to get out of hand and things can change really fast with Carly. She was also complaining that her tummy hurt and she hasn't complained at all so I knew it was real. Anyway, I called Tracie and she came and stayed with Kaylee and Carly and I were off again. Another visit to the hospital. They checked her over completely again, not wanting to miss anything. They took a bunch of blood and, of course, her white cells and platlets, hemoglobin, etc. are all very very low. She actually has less than zero white blood cells. Didn't think that you could have less than zero anything but apparently it's possible. They decided to keep her here because they were afraid that her fever was going to suddenly spike up. Carly was complaining about pain and they thought that maybe she had an intestinal infection. Unfortunately you can't see if she has this infection by taking blood so she needed a CT scan. She wasn't feeling well at all. She didn't want to eat or drink anything so she wouldn't drink the contrast medication that is needed to see everything necessary in the CT scan. They needed to sedate her and put the ng tube down her nose into her stomach so she could get the contrast that way. The medication used to sedate her didn't work as well as it did the first time back when she was in ICU so she cried and fought this but at least the medication made her forget about the tube. Of course, just like last time, when she was on her way up from the CT Scan, she pulled the tube out. She is very helpful. The good news is that her tumor is getting smaller and she doesn't have any intestinal infection. Her fever has stayed around 99 - 100 but hasn't really spiked yet, like the docs thought it might. (yet) She still complains that her tummy hurts and maybe that is just how it is. The Hickman could be bothering her, the bandage surrounding it could be pulling on her skin or she is just frustrated and sick of not feeling well. The difference a day can make. On Monday, she was running around with Kaylee and her cousin Hannah, screaming, laughing and having a blast. By Tuesday morning she was wiped out and just layed around all day.
Carly has been and is the main focus of this web-page but I would just like everyone to know how the rest of us are holding up through out this very stressful time. Chuck has been doing everything he can. While Carly is at the hospital Chuck has so many responsibilities and is pulled in so many different directions. He gets up in the middle of the night and goes to work, he works until mid-afternoon, then he needs to get Kaylee, go and pick up Alicia at school, go home, make supper, take care of the house, take care of the kids, try and take care of himself and hopefully he can get to the hospital once in a while. He would like to be here more but it is hard on Carly to see Kaylee and it is hard for Kaylee to see Carly and it is hard for Kaylee to see me and then have to leave me. There are a lot of people who do make it possible for Chuck to come up here whenever possible. Chuck and I even trade places when possible and I'll go home while he gets to hang out with Carly. Anyway, pray for Chuck that he is finding the strength to keep going. I couldn't be here with Carly if Chuck wasn't doing everything else. he has been great!! Tracie comes up whenever I need her to and she has done it at the weirdest times and at the drop of a hat. She gets Kaylee in the morning by 7:15 and either keeps her or has Grandma or Sharon (our very good friend) take her when possible. She has done laundry, picked up the house, cleaned, bossed around Alicia who sometimes needs it and just has been there for me in every way. Grandma and Grandpa Wornson are awesome too. Grandma has cleaned, taken the kids, taken Tracie's kids, she'll take anyones kids if it will help this all work with Carly. They have also been living minute to minute just waiting to be called on and more than willing to do what is necessary. The girls' aunt Carol took Carly, Kaylee and me to the zoo the day Carly got home last time. She has given the girls so many stuffed animals that our house looks like a zoo and the girls love them so much. G'ma Louise has given us more than we could ask for, even without us asking for it. She knows how much we are struggling and we could never find the right words to let her know how much we appreciate everything. My friend Sharon has been a huge help with kaylee and I know will do anything she can to help Carly and all of us.
Now back to Carly. We probably will get to go home tomorrow so everyone pray that all her counts start going up and that she doesn't get sick. i will be in touch as things progress with the stem cell harvest, etc.
Love to all - Karen
Tuesday, May 20, 2003 7:17 AM CDT Carly is still doing really well, I am so thankfull for that. We got her first lab counts yesterday and they were right where we all thought they would be, her white blood cell counts were zero, Her hemoglobin and platlets were alittle low but nothing to worry about now. The shots I have been giving her to bring up her counts have been awfull to do, She really hates them, I thought she might not remember between them but she does and when I tell her it is time for her meds, she will say, no shot. It is just tearing my heart out each time I give her one because she does not want anything to do with me after it. I just have to remember it is going to help her get better, and hope she will understand that I'm only doing it for her own good. Last night her temp went up to 99.2, I checked it again at 1:00 am and it was the same, Shes is not up yet so I will check it when she does get up, I so dont want her to get a fever, I want to stay home as long as we can. Keep praying for Carly, and check back often.
Love, Carly and Family
Friday, May 16, 2003 10:25 PM CDT Carly came home from the hospital last night, she has been non stop since then, I thank God so much that she is not getting too sick from the chemo. Carly's Aunt Carol Kaylee and me all went to the zoo today, I want Carly to have as much fun as she can while she is able. Next week her counts will be really low and we will have to be very safe, by not going anywhere, or exposed to anyone who is sick. I am having to give her one of her medicines as a shot in her leg, it is what will bring her counts up and they need that to get a good stem cell collection that will happen the end of this month, I had a real hard time doing it but I have to keep telling myself it is going to help her. Again I want to thank everyone for all you are doing for us.
Tuesday, May 13, 2003 9:08 PM CDT Well, here we are again. The second round of chemo began on Monday night at 7:00. Carly is being such a trooper. Right from the start on Monday morning when they had to check her blood counts, she was somewhat apprehensive to give up her tubies but she did and was getting back in the swing of the hospital thing. When we arrived on monday morning we went right to the day-treatment room for the blood draw. Then we had to wait for the results so we went to the cafeteria for some breakfast. Carly wanted blue yogurt, so she got it, however, that wasn't enough. She ate 3/4 of Tracie's omelet and 1/2 of my omelet. I guess she was a hungry girl!!! The reason this is so exciting is that last time she was in the hospital she didn't eat anything but she is doing well in that area now. Anyway, sorry about getting off the track but there really isn't a track to stay on. A lot goes on and it is hard to keep it straight. They started her IV in the day-treatment room because the unit where she goes for her hospital stays was really busy but later in the afternoon she got her room and is now seems to be more comfortable in familiar surroundings. So far she has been tolerating the chemo, no nausea at all and she has been in a pretty good mood. Tomorrow we have a meeting with Dr. DeSantis to discuss the stem cell collection. We have heard that this could take anything from two hours to two days. Pray for two hours! This month is going to really hard for us. I will do my best to keep you up to date. Just know that Carly is doing well right now, thanks to all the prayers and thanks to God!!!!!! During the time after this chemo it is so very, very important that Carly be healthy and germ free. This will be an extremely hard time for her and for our whole family. I am going to have to give her shots in her leg with the medication called GCSF. This is the medication that helps her bone marrow make the stem cells that mature into white blood cells. The idea is to catch her when she has a sudden jump in her stem cells to collect them before they mature into white blood cells. (stem cells are baby white blood cells). More info on this when I learn more tomorrow.
Please keep us in your prayers and check back often.
Friday, May 9, 2003 1:50 PM CDT Well Carly and Kaylee had a GREAT birthday, It was so great that we got to be home. We are sure going to make the most of home days. As you know we are going back up for her 2nd Chemo on Monday, I hope it goes as good as the 1st. Carly is scheduled for another bone marrow biopsy on May 28th, I'm not sure what that all involves, but I'm going to talk to the Doctor on Tuesday so he can tell me. I do know that it would be a very good thing if it came back "clean" of Neuroblastoma cells. So PLEASE everyone pray for that. HAPPY MOTHERS DAY TO ALL OF US.
LOVE, KAREN
Wednesday, May 7, 2003 8:32 PM CDT Well Carly made it home from the hospital today, this is the best birthday present anyone could ask for. She is still going to be on some oral antibiotics and now an appetite stimulant because she is just not eating, hope being home will help too. You wouldnt think anything was wrong with her, when we got home she was so happy. She was running and jumping all over the place, I just cant stand the fact that I have to take her back in 4 short days, We are going to make the most of the time she is home. I found out today that they are going to do another bone marrow biopsy after this chemo. to see how the chemo. is working, so please everyone pray that it will come back clean.
Thanks again to everyone for everything!
Love ya, Karen
Tuesday, May 6, 2003 12:25 AM CDT I would first like to thank everybody for everything they have done from bringing us food, helping with cleaning, taking care of Alicia and Kaylee and just being there for Carly and me.
Carly has been such a trooper through all this. What she is going through no child should have to. We were able to come home from the hospital on Monday, April 28, after her first chemo. Which she did really well with. Didn't have much nausea and was so excited to get home. Then on Thursday, May 1st, Carly was running a fever and they thought it was best to take her back to the UW so she could be watched. When we got there they started her on antibiotics and took a lot of blood to check all her counts. She rested well the rest of the day. Friday morning the doctors came in and were concerned about her hemoglobin counts (blood) and wanted to retest them. When those came back still very low, lower than they expected it to be, they were concerned that her tumor might be bleeding into her abdomen. They thought it best that Carly be moved to the ICU so she could be watched more closely. Throughout the day she was given packed red blood cells and plasma to help with clotting.
They scheduled a cat scan to look at her bleeding and see where it was coming from at 3:30 p.m. that day. Carly needed to drink a liquid contrast to help the cat scan see things in your body. But she has not eaten or drink anything much since going into the hospital that there was no way she could drink this 30 oz. drink. So they needed to sedate her and gave her a nose tube to give her the contrast. Again she was such a trooper!
Waiting for the results of yet another test was so hard to do. Thankfully it came back not as bad as we had all thought. She was bleeding a little but giving her more blood they thought would help the situation, because after the cat scan and becuase of the blood she got earlier, she started feeling better because when we came back up from the cat scan and getting her setup again in her room, we hear Carly say, "I took it out". We turned around to see Carly had pulled out her nose tube. Ain't that Carly!
Carly slept pretty well through the night. Saturday morning she woke up in a pretty good mood. We are still trying to get her to eat more. Her blood counts came back a little bit higher so they are going to hold off on giving her more blood to see if her body will bring it on its own instead of them supplementing her with it.
Saturday was good and Sunday afternoon she was moved back to the regular unit, out of ICU. They want to keep us up at the UW to keep an eye on her counts and make sure she is getting enough to eat. We are starting to get worried about her not eating, so she is getting anything she could possibly ask for. On Monday they were saying we might go home on Tuesday, but they thought that her breathing is a little fast so they took a chest xray. Basically it is okay, no pneumonia, but there was a small area that they were concerned about so we are going to stay probably until Wednesday. This will be perfect because MAY 8 IS THEIR 3RD BIRTHDAY! And what a birthday present that will be!!
I thank everyone of you everyday. Please keep Carly in your prayers.
Karen
Tuesday, May 6, 2003 12:25 AM CDT
Monday, May 5, 2003 9:06 AM CDT
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