We will leave for NYC on Monday...(TOMORROW!!!) I can not believe it-- YES -- I have been home awhile but I think that makes it harder to get back into the NB fight mode!!
We have had several corporate angel flights cancelled this time so we just booked a USAIR flight--- !! I was going to go crazy with all those phone calls this week regarding changing flights-- so we decided to book a flight instead of waiting to see what happens at the beginning of the week--
The good news is that we will finish accutane tonight--- YEAH--!! His mood swings have been trying and we basically walked on egg shells last week!! His skin was much better this time--- we used SWEEN creme ( a tip from Marett's friend) and it seemed to help--- LIPS are the hardest to keep from cracking especially when the wind and cold came a few days ago!! He will have 14 days off -- and then back on again for the 3rd cycle-- There are 6 in total-
He will have an MIBG injection on Tuesday -- then a MIBG scan on Wednesday-- And Thursday he will have a CT and Bone Marrow tests-- I hope to be home by Friday-- but if the HAMA tests says he can get another round of 3F8 then we will stay next week!!!
I guess the next update will be from the Ronald--- maybe the weather will be warmer than here???
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
10 comments:
Hope all goes well in New York. The weather in Delaware is supposed to be warmer at the beginning of the week and then back into the 50's by midweek so I am assuming New York will be about the same.
I am so glad you got some time at home with your family. I have only been following your blog since October - I cannot believe you have been doing it even longer than that. The past year must seem like a blur to you and I pray that the next year goes much better for you and your family. I think of Grier every day and love hearing about him and seeing his picture - he is absolutely adorable and seems like such a strong little boy, I just know things will keep getting better every day!
Patti
I will hold you close in my heart as you travel north. Hopefully you will get some nice weather.
We will be praying for you all as you start this next chapter. Please remember although we are not with you,not a moment goes by that we do not think of you.
Be safe,
Lots of love,
The Paine's
Sorry,it is just me again. I just wanted to say that I love the picture of Grace and Hayes with Grier. Grace looks just like you and has that same look of determination in her eyes.
I promise I will not take up any more space until I hear from you again.
Sleep well,
Mary Ellen
Godspeed tomorrow. Even though Corporate Angels couldn't get it together for you, the USAir Angels will wing you to NYC.
My thoughts and prayers will be with you, Jeff, and Grier this week as Grier undergoes the tests. Hope you'll get good news about the HAMA while in NYC and the next 3f8 can go forward while you're there. I will be praying for that plan!
Will look forward to your blogs from the Ronald this week.
All my love and prayers tonight,
Betty G
Hi Amy,
The March 27th posting was so well written. We who have witnessed your journey stand in awe of how you and Jeff have held everything together the past year. We hope Grier's testing goes smoothly and that you can go ahead with another 3F8 treatment next week.
love from the Baders
It was so nice to check the blog each day and not find anything and know you were all here together in YOUR home. I hope that all goes well in NYC and that you are able to do the next round and get it out of the way. UNCC will be having a Relay for Life night on April 11th. I'm a survivor that goes each year and would like to invite all of you to come join us for the survivors' lap, dinner and fun for everyone. Sue Eldridge
Safe travels and we will be thinking about you! Hang in there and hugs and prayers from our family to yours.
Sally, Pete and Molly
Well, I would guess you're getting settled again at the Ronald/NYC...maybe dinner at Lenny's or Johnny Rockets! In any event, I sure hope you get a decent night of sleep...preferably not in the room with the crazy sounds at 5am. Sounds as though you've got quite a week planned. We'll look forward to updates and hope all goes according to plan and Grier is able to get on with another round of 3f8. You all are certainly in our thoughts and prayers non-stop with tons of love!
Best wishes to you this week, Amy! Love to you ALL...
Dina
I hope you had a serene flight to NYC and are safely bedded down. It warmed my heart over the past couple of weeks to think of all of you enjoying family life at home in Charlotte. Now that you are back in NYC, please know that many many people think of you often and pray for you every day. Stay strong, as you always are, even when it gets tough. You are the bravest people I know.
Nancy B.
We'll be thinking of you all and continuing to pray for Grier. Hope that all the tests turn out well and that Grier will be able to have another round of the 3F8. Love, Nancy and Roger
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