OK-- I promise I will not count down each radiation treatment--- but we do have 1 done-- and 13 more sessions to go!!!
We were up early this morning--- our ronald room is street side so you hear everything going on -- You can only imagine!!! Grier had an apple juice and then we just waited around until 11:00 -- I think not eating after midnight every day will be a challenge-- It usually takes him about 10 times asking for something to finally understand--- you can eat after we are done at the clinic!!!
We met with Ursula-- we actually love to see her-- She is the nurse practitioner of the NB team-- She cleared him for anesthesia and then we moved to the next room-- We found out that Grier will have his Hickman (double lumen port) removed next Friday-- They will replace it with a mediport-- it will be under the skin and when he is not accessed he will be able to take a bath-- swim etc!!! There will be no tubes hanging down from the outside of his body!! It is a surgery to do all this but I am kind of excited-- we will not have to do dressing changes at home, flushing lines etc.-- He seemed to do fine with his radiation set-up today-- We will see if we see any side effects the closer we get to the end of the treatment-
Tomorrow-- We have to be at the clinic at 7am!! He will have some blood drawn to do a HAMA test-- This will tell us if he is OK to continue with 3F8 the week of the 11th-- We do not want a high number because he will not be able to continue 3f8 until the HAMA goes away! After that we will head down for the radiation treatment w/sedation-- it should take about 10-15 minutes and then we wait until 1:00 to do it all again---After the second treatment he can eat--
I am sure I have confused everyone--- Oh well-- it is a crazy schedule for the next 10 days!! Grier is very confused-- today at 3:30 we went to get lunch and he kept telling me he had not had breakfast-- well-- he was right!! Breakfast will be out of the picture until the 9th!!
Grier and I are here by ourselves right now--- My mom will come this weekend and stay until the 9th-- Then Jeff will come and stay with us until the 15th or 16th-
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:
Hi Amy,
Wow, you guys really have a schedule to keep up with! Sorry he has to skip breakfast for so many days. We are all praying that thigs will go smoothly. I am excited to hear that Grier is really edging back towards some normalcy having the Hickman removed and you can really look forward to this summer. Love and prayers sent your way and and we will get some cards heading north as well!
love Isabel
Love the countdown - it always makes me feel better to put x's on a calendar. I guess it's like checking off your to do list.
Glad all is going smoothly so far in NYC. I've been thinking about you and Grier all day and praying for you both. I hope you know that you are never far from our minds and our hearts.
One thing I do have to say - you are fully to blame for my kids being hooked on Wonder Pets!! That is 'vewy seeweeus' :)
Hugs and kisses to you both. Stay warm.
Love, Nibal
xo
Great news about the mediport. It will help him feel less "sick" without the tubes I bet. Not that he sounds like it has slowed him down. I think the " I haven't had breakfast yet" thing is great...maybe do it in reverse, have breakfast for supper...we had pancakes and sausage tonight at my house!
Crystal
Is Grier jumping on the beds yet??? Glad today went well and that you will be busy, busy, busy -- it helps the time pass more quickly! Hooray on getting the Hickman replaced with something much better -- swimming pool and ocean, here comes Grier!
I know you miss not having Jeff with you, but know H&G are glad he is with them. They are both chugging right along with school and everything else they do -- such strong SUPERSIBS!
Hope you can get moved from street-side at the Ronald although it probably gives Grier something to look at (or are you to high up?).
Know you and Grier in NYC and Jeff, H&G in Charlotte are in my prayers tonight and every night.
Sleep tight!
Betty G
Thanks for the update! Thinking of you all day today...hoping your new schedule in the big city went well. Sounds like a crazy 14 days; but, you two are a pair and are more than "up to the task!"
Everywhere I go I have someone ask me about Grier and your family and mention how amazing you all are. Mind you, these folks do not know you at all. Your stamina and strength have traveled far beyond your knowledge into the hearts and prayers of so, so many people. Apparently the husband of this fine lady went to school at CLS with Jeff and said he was a very good baseball player. This must be a hereditary gene by the sounds of Hayes and Grier! Way to go Christenbury boys!
Hoping you are able to get a different room soon so you do not have to wake up "New York City" style. Obviously you're not getting caught between the moon and New York City and sleeping in late to make up for it. Here's to squeaky wheels that get the grease. I've learned, as I know for sure you have, you won't get it if you don't ask! Go get 'em, Amy!
Tons of love and prayers...
Dina
Just want to let you know that I've really been thinking about you and praying for you since your return to NYC. Glad things are getting off to a positive start. Hopefully you can get away from the streetside room soon!
Alice Arwood
I know you must feel lonely. We all wish we could do something to help you. Just know you are being remembered and glad to have this chapter almost behind you and your precious Grier. One step closer to a healthy little boy!!!!
Sandra Eubanks
Post a Comment