OK-- we can start checking things off-- urine collection-- DONE ( a very LONG four hours!!)--- MRI of the brain and orbits-- DONE ( 1 HOUR LONG)----CT of the abdomen , pelvis, chest-- DONE (15 minutes)--- Tomorrow-- all we have to do is the radioactive dye injection---@ 2:00 ???! And Friday is the big day-- MIBG scan.. bone marrows and possibly the first set of immunizations---
We met with the NP-- she looked him over-- he weighs 33 lbs! Talked about HAMA-- he is positive again-- his number is 6000--- it needs to be below 1000!! So, we will keep checking every month-- still no answer on what will happen if he becomes negative again-
Thanks for all the emails-- I guess you can tell I am stressed-- and the hotel situation did not help-- We checked out of the Helmsley Medical tower today around 8am and left our bags there until we were done with scans--- Around 1-- we walked back and headed up to destination #2--- and there was a mix up in the reservation- no I am not kidding! I think this may go down as the worst NY ever! - After a long conversation-- we got a room here for tonight and tomorrow--Guess what? We were in room 810 last night at the Helmsley and tonight we are in 810 at The Affinia-- weird huh? I told Jeff we should go get a lottery ticket with 810 on it!! We had lunch at Jackson Hole-- I had to tell Grier that Mrs. Leary wanted him to go there because he wanted Wendy's (grrrh!) -- It is right across the street from our newest hotel-- and the funny thing is that we looked all over for it in our previous trips!
On Friday, we will probably be at the RMDH-- Flights are booked! I am still going to call but it looks like it will be Saturday-
That is it for now-- we will sleep well tonight!! The room is nice and quiet!
ps-- We did make it to FAO today-- Grier made a custom HOT Wheels car-- I will post a picture soon- Retail Therapy right? or just a FOOL!!! That is the funniest concept-- you pick your car on a computer... choose a color.. wheels.. and an engine... and then it shows it being made on the screen--- about 3 minutes later-- the car comes down the shoot in a little clear box!! I thought it was going to be really CUSTOM--name etc.-- it is basically a hot wheels in a plastic box for 20 times the price!
The apple store is right beside FAO and I told Jeff-- that we did not need a room-- we could just line up with our lawn chair with the 8 (so far) and camp out and wait for the new iphone coming on Friday!! I think he said-- Are you crazy?--- :) I may be cuckoo by the time this is all over!!
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
6 comments:
You must be exhausted. I can not believe the experience you've had this trip...stunning. Like you said, it really can only get better at least. Quite apparently, the hotel situation is proving to be a challenge, likely not to change this time...check that off. With several tests under his belt, Grier is making considerable progress on that front...check. Hope things work out well with the results of all tests...praying for that. Retail therapy...check!
Hope your beach vacation is still fresh in your minds...clearly you all needed that heading into this week of h.e.double hockey stick (as Abby & Adam call it).
Thinking of and praying for you that all will go well from here on and that Grier stays comfortable and happy and that your trip home is uneventful.
Know you're thought of daily in our house and in our every prayer...
Love,
Dina
Amy, Amy! How in the midst of such an awful experience (thank heavens Jeff was on this trip!!!) can you amuse us in your updates!
You are incredible and we are better for knowing all of you.
Continuing to keep you in our prayers as you end a week, hopefully much better than you began it. GO GET THAT LOTTERY TICKET! :)
Martha
You are amazing. Somehow you just keep going. I hope you all rest well tonight. I prayed so hard today and will continue with all my prayers and thoughts going out to you.
I cannot wait to see the picture of Grier.
I hope you sleep well and have a much much better day tomorrow.
Lots of love to you and Jeff and Grier.
Mary Ellen
Amy,
Cancer does SUCK!!!! I am amazed you just keep ticking. No real options but you contiunue to keep fighting for all good. The Super Hero of Moms. I hope today is a better day and that all the tests come back with smiles. We continue to think of you and pray a lot. I hope by some crazy chance you can get home on Friday. Who know maybe it will be flight 810!!!
Loving thoughts your way!!!
Stephanie G.
well, no hotel problems here, but lots of trouble with the baseball schedules because of these afternoon storms. The storms are waiting just long enough for everyone to get to the field in uniform and ready to go ... Maxine's Jr.'s team actually had a 3:30 game yesterday trying to beat the storm - so the thunder, lightening and rain came in the
6th inning. They waited it out and finished the game at 7:30 .... they lost. The 9/10's and 11/12's haven't gotten to play since Monday.
Good luck with Everything on your end, hopefully things are smoothing out. We'll be dodging the weather again today...
Go Dilworth !
Michele
Hang in there! We're thinking of you guys. -The Haydens
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