Grier and I went to clinic today-- He is Nutrapenic... and his platelet count was 5!! That explains the nosebleed while we were waiting for the doctor-- He got platelets and we were on our way-- but had to make a quick stop in Chick-fila for lunch to go--! He is not gaining weight-- actually today he was 27.4 and last time he was 28.5-- They say it will happen if he continues to eat-- The rash is a little better-- he is on an anti-fungal med-- especially since he has no immune system right now-
We are still doing the shots-- On Monday, we will triple the dose of neupogen to get his counts going-- as soon as we see them heading up... we will head back to Sloan for stem cell harvesting-- We will save them for later... in case the treatment at Sloan does not work and he needs to have a Bone Marrow transplant- We are not sure how long we will be there this time-- I would hope 5 days-- but we all know how that goes!
Other than that medical news-- we are good-- We have been busy and this week in no different.. PTA program.. basketball and the annual Lessons and Carols at Covenant-
Thanks to MPTS for the great banner Miss Horner made!! We had fun reading all those signatures!!!
Some exciting news--
LCH has patients in it now-- It is very exciting--I have not seen it yet but hope to get over there soon-- I am at CMC all the time-- but believe it or not the oncology clinic is not in the new hospital! So, if we are in town I will get to see it next weekend-- Lite 102.9 is doing their annual radiothon for the Children's Miracle Network and I will be taking part in that this year! So listen to those carols next Thursday - Sunday during The Toni and Jen morning show and you will hear my interview with a musical montage in the background! I sure hope it not a sad song!!!!
GO STEEL FAB!
Go Grier Go Magnets are Here!
Before 3F8
After 3F8
30 minutes later
Free Money for Go Grier Go!.. just by shopping online!!
Grier leaving NY-pres and going back to MSKCC
www.cornellpediatrics.org-- Great hospital!
Grier going for a ride in the ambulance across the street
just transporting-- not an emergency!
Grier patiently waiting surgery to remove tumor
Monday 10/29/07
Go Grier Go Picnic in the Park
Thanks to everyone that helped!!!
On the way to NYC!
Grier at the "new" clinic at CMC
Playing with the doctors and nurses 10/19/07
Some of our team at the Hopebuilders 5k
HOPE IS GOOD!!
Supersib- GRACE
SuperSib-- HAYES
Grier and his Wonder Pets fly boat cake!
I am 3!
Grier & Grace at Covenant
Grier & Pat
Go Grier Go!
Jack and Charlie wearing Go Grier Go T's
8 comments:
Thanks for the update today -- hope he ate ALL the bagel he showed Kim this morning in carpool!! And hope he ate lots of Chic-fil-a at lunch -- got to get that weight back up!!
Even when things are going well, you are busy going to clinic, going to PTA (I'll see you there), going to b'ball practice, Lessons & Carols, and then going back to MSKCC. Whew, it makes me tired just hearing what you are doing! What a SUPERMOM you are - you have incredible stamina! How lucky your kids are to have you as their mom!!
Hope the counts will continue to go up, up, up, so you can head back to NYC and get back home soon!
I went through the hospital this afternoon on my walk and saw that the barricades are finally down at the LCH entrance. I will go in one afternoon to see the lobby area -- so glad it is open now. When Grier goes back (hopefully not too soon!!)he will enjoy the newness of it and hope he gets one of the rooms with neon outside!!
Love and continued prayers for Grier and your family tonight,
Betty G
Hi Amy,
Glad to hear you are having a fairly normal hectic week again! I hope the shots continue to be easy for Grier and give a boost to his immune system, I don't know how you do it! Looking forward to seeing all the kids sing at Lessons and Carols this weekend, I hope you will be able to see the Angelus choir this weekend...we ran out of stoles tonight!! It will take us forever to go through the church!
love and prayers for you all,
Isabel
I am happy to hear from you. Susan Leary and I were just talking about you and Grier this morning. Your ears must have been burning.
Well,I am glad the rash is a little better. You have so much going on. I will pray for some weigh gain and a quick trip to Sloan.
I will listen for you on the radio. Just request a cheerful song. (The wheel Barrell polka) I am not sure that is even the name of it and I just realized that this is not just you and me e-mailing. Everyone else can read that I do not know what I am talking about.
Perhaps I should stop now. Remember my brother has a room at Levine named after him. I think when you go there you need to visit it and pray really hard.
I really am going now but remember as always you are in our hearts and prayers,
The Paine's
Hi, missed you! Praying things perk up a bit. Hang in there and hope to see you soon. Victoria
From Susan Leary:
Loved hearing from you! As Mary Ellen said in her comments, we TALK about you when blogs drop in frequency :) Betty G. is SO right in saying what an inspiration you are to all of us. Santa is coming down your chimney, for sure!
Grier's weight will improve. It seems he goes through these spurts. He's one macho man! Go Grier Go, much love!
Amy,
Glad everything seems to be going well. Don't be discouraged re: Grier's weight...believe me when I tell you that life can be sustained on 27.4 pounds even for a 4-yr old. Mitch waivers between 27.4 and 28.4. Last week I had thought he moved fully into the 28# range; however, today he was back at 27.6. You know that when Grier begins to feel better he will pack on the ounces/pounds with Krispy Kreme (Mitch's favorites)!
I sure hope all continues to go well with the shots, rash, clinic visits, BC counts, etc. Does is ever get any easier? I sure hope so...and soon! How life gets put on hold, so-to-speak, yet you still have to press on for three children who know nothing of the stresses of your now daily life. I marvel at you & Jeff and your stamina and positivity...I know you think you have none. You're doing what's best for your family and you're a shining example of how to handle a curveball with grace and focus.
Go Grier Go! Love to you all...
Dina
Dina told us about Grier right before his visit to New York and I have been checking on his progress ever since then. Although I have never met you, I must say you seem like a wonderful person just bursting with love for your children. As a preschool teacher and mother I know that the most important thing you can ever give your children is your love and attention and you do that on a daily basis.
I can't imagine going through all that you do every day and the fact that you always seem so upbeat just amazes me. I think God definitely chose the right family for Grier - he is blessed to have all of you in his life.
I will continue to pray every day for Grier and hope that one day I will read your blog and it will say that he has been cured!! I hope you all have a happy holiday and enjoy the excitement of this wonderful time of year.
Patti
LOVE the picture of Santa's helper!! So cute and the smile is so wonderful! Nice to see the familiar Grier again! Grace was beautiful in the program tonight --hope it was exciting and wonderful for her. Grier will enjoy seeing SUPERSIB Grace on video!
Prayers coming your way on this cold yet beautiful night. The stars must be shining for your family tonight!
Betty G
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