I keep reminding myself that the first day of this treatment is the same--- and it is for the most part--- It is a long wait to get started and cleared by the team-- by the time the infusion is done you feel like you have been run over by a truck--- And I am not in pain-- just watching Grier and helping him cope does it to us!! We had a pretty normal day-- we did NOT have any breathing issues which is always a plus--- and we had a great group of nurses ( Lea, Latisha, Casey, and our NP- Ursula) helping us--we have some favorites now and it nice to see them when we return each time!! I wish we were at home so I could get some treats delivered to them like we used to do at CMC!!!
Grier perked up a bit around 7:30--- he wanted to go to the pizza place for a slice--- we strolled over because his legs were hurting and then came back-- He has a little puffiness in his face but other than that he is comfortable- I hope he stays like that all night!
Tomorrow will be much of the same-- but hopefully we will be back in the room at the RMDH earlier-- but you never know--- Historically, hives happen a lot on Tuesdays so we will see how he does--
Our plan is to come home Saturday early morning-- I am looking forward to leaving NY--Springtime makes it harder to be here because there is so much I am missing at home this time of year!! AHHH-- 5 mores days of NY living-!
ps-- There are some kids here at the Ronald that will be on the news a lot this week--- One is going to meet with the Pope at a special healing mass when he visits NY this week--- and the other will be on THE CBS EARLY show on Thursday am--- Both have NB --- So hopefully the news coverage will help with awareness--
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
4 comments:
Hi Amy Jeff and Grier,
We are glad to hear the flight up was smooth and treatment went as expected today. I hope that the next few days and nights go by quickly...we should be back to Spring temps by the time you return. It feels like winter here today! Love and prayers for a good week and that the 3F8 contiues to keep the NB away!
love Isabel
Maggie reported a good day in carpool -- so glad for all of you! The troopers are back in action! Glad things went well today and will be praying tonight for another good day tomorrow, without hives!!
It was cold and dreary here today -- kids were definitely cold who did not bring jackets to school today. It pays to check weather.com daily! I had a student who checked that website every morning before coming to school last year and could tell us what the high was going to be for the day during group time!!
Glad Grier was up for pizza tonight -- he looks great and we would love some pics while you're there!
Love, hugs, and prayers tonight --
Betty G
WOW! The Pope AND CBS news? I sure hope this will bring new life to NB research and shed some light on the scant, at best, dollars spent on it. Cerainly Grier and all of the other children you've seen deserve much more than what's available now. Keep the faith!
I am so glad to know Grier did well today. We were thinking of him in carpool this morning hopeful he was feeling our love. Praying the next several days bring easier times than rounds 1 & 2.
Praying for good rest for you all! Tons of love...
Dina
Go Grier Go. I am sure this is rough on all of you and I am sorry. You are all real troopers. Hope thoughts of coming home will help ease this a little bit. I know the supersibs miss you.
Here is love to you all in N.Y.
As always we carry you in our hearts daily,
The Paine's
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