I have to say I started this day a little easier based on yesterday's response and last night-- Grier was so funny after dinner (Lenny's!!)-- he was wild-- jumping/diving from the Jeff's twin bed to his pull-out-- and having a great time watching...HAIRSPRAY!!! Funny huh? We joked with him and said no more black/white cookies-- they make you crazy!!! He finally fell asleep around 10-- and woke up once around 12:30am because his legs were hurting-- You could really tell because he was rolling all around and could not get comfy-- so I gave him a dose of pain med and he slept until 8am-- whew!
We left later than normal to see if they would work us in in Radiology-- they could not so we started 3F8 later than the other days-- but at least started before noon! I asked if the oncologist could come to us since we were going to be in the midst of treatment-- AND she did!!! She did our consult in the room while Grier was sleeping off his drugs-- The biggest thing we found out was there is not a chance in hell we will start radiation on Monday-- I was starting to wonder..because everyone you talked to had done simulation etc. to get ready--- and since we had not even had the consultation it was concerning me with the timing-- She said we MAY have the simulation done on Monday but it is up to anesthesia--- so we will see!! Looks like we come home next week for a few days -- I am not just going to hang out here and wait!
AHHH-- Now... I will tell you about 3F8 today... remember everyday is different! The shot started the day off bad-- I gave it in the Ronald and the 2 piece syringe that CMC gave me came apart as I was administering the leukine!! It sprayed in my face and the needle part was left in his leg-- NICE!!! He was fine and I think he got the bulk of the dose-- When we got to the treatment area I asked them about it and showed them the needle-- and they laughed and said they were cheap! And then gave me better needles-- They said it happens to them with that kind of needle too-
He started the procedure fine but he had breathing issues again-- not because he was not screaming but because he might have had hives in his throat that was making it hard for him to breathe-- I got our nurse when he had that"look" in his eyes and she came in and gave him a breathing treatment which helped a lot-- Then he was able to relax and sleep off the Dilaudud-- He has been getting terrible headaches from the Dilaudid and that has been that worst part until dinner time-- You can see it in his eyes that his head hurts-- and today he face has some swelling in it so he looks so tired!! That will be gone soon.. I hope! And he may be bouncing off the beds!!
We heard it snowed in the Queen City-- I had to share with our new friend from Michigan that school was closed-- She thought that was funny!! I hope everyone made a snowman before the rain washed the snow away!!
One more day to go--Can not wait-- We are scheduled for round 2 of 3F8 the week of 2/11!!! So it looks like Valentines Day will be spent in NY!
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
7 comments:
Yummy black & white cookies and watching Hairspray ... Grier really knows how to hang out ! And let's not forget jumping from bed to bed, always a favorite. Amy, you give us such a well rounded view of these days in NYC. After I read the blog I feel there's so much to digest. The grueling treatments balanced with the way Grier bounces back and the silly ways he finds to entertain himself. We're thinking of you guys all the time as you make it through this particular set of days. Can't wait to see you back home.
The Todds
Every time I read the blog my heart hurts. I feel so much for you guys and hope and pray that you will get some rest.
You are all so brave and I hope you will get some time at home with the super sibs.
The snow fell and then washed away. No school-wish you had been here to play in it. Hopefully we will get another "storm" while you are here. That way Grier can enjoy it.
As always we are with you every moment of this journey.
Get some rest and remember you are all so loved by so many here in Charlotte.
Love,
The Paine's
You remain in our thoughts and prayers. Yes, pretty funny schools were closed today! I am sure your friends from Michigan got a real kick out of that one! Pete did! Hang in there and lots of hugs coming our way to yours.
Love -
Sally, Pete and Molly
Grier, Amy and Jeff, I so hope that tomorrow is the smoothest day of the week for all of you and that it only gets easier from here on out. My kids now ask every night what Grier is up to and thanks to you I'm able to fill them in and to keep them posted. You're all champs.
Michelle Mulligan Beard (cary,nc)
From screaming to bed bouncing -- What's next???
That must have been scarey this morning when the needle came apart -- you certainly don't need that when giving the shots you dislike to give so much! Glad you are one day closer to being finished with Round 1 of 3F8.
It must be weird to see Grier in such pain in the morning and jumping around on the beds at night! He certainly bounces back quickly, doesn't he? I'm so thankful that he doesn't remember the pain he was in each morning when you get back to the Ronald!
Glad Grier got his dose of Lenny's -- must have had a turkey sandwich I'm guessing.
Yes, the "snow" was pretty much gone by the time we all got up after going back to bed after being woken up by CMS at 5:30telling us there was no school!! Maggie probably got 2 phone calls, one for Hayes and one for Grace. Isn't ConnectEd wonderful???
Saw Grace yesterday and she is looking forward to her trip to NYC this weekend. How about those supersibs jetting to NYC every few weeks? Being able to come home next week won't be so bad -- maybe you can enjoy some more fun-at-home time.
Hugs and prayers for you tonight. Hope tomorrow goes as well as the rest of the week has.
Betty G
How crazy that must have been when your syringe came apart leaving the needle in Grier's leg! I would have "freaked" and I'm sure you did not! Your calm is incredible. I am so delighted to hear of Grier jumping from bed to pull-out...awesome! This is sign that he WILL NOT be held down by treatments, drugs, etc.
I sure hope today brings an easier time for Grier and for you & Jeff. Also, hoping that you will get the news you desire re: radiation, stimulation, etc. Keeping you at the forefront of our minds and deep in our hearts with love and prayer.
Lots of love...
Dina
Oh Amy - the thought of that syringe breaking just gave me chills. You are even more of a hero to me for handling needles - one of my biggest fears!
I was looking through some old pictures last week and trying to get some organization going and ran across some shots of Grier and Moussa when they were in the Toddler room together. I remember that twinkle in Grier's eyes and his sweet smile and laugh. I have such a vivid image of him jumping on the beds and squealing with laughter. Thank God for the resilience of children and for the healing sound of their joy - and how quickly they find it in the smallest of things.
I've got NY on my mind lately and specifically the Christenbury's as you make your way through the city and navigate this crazy path. I hope you have some fun with G & H this weekend and get to just "be" for a little while.
Love to you all from green and wet Charlotte!! (snow?? what snow??)
N
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