2 More days of 3F8 complete since my last update.... and all three days have been so different!
Tuesday he had the "typical" response to 3F8.... LOTS of pain... but we did not have the breathing/hive problem that he had on Monday...He woke up late afternoon and wanted to go to the playroom to play games and ping-pong... he also got to hang out with Adam for a little until he left to go home. He even felt well enough to go to a dinner and party in the dining room that was provided by the NY Athletic Club-- I could tell at dinner he was losing steam so after he ate cotton candy we headed back to the room--
Today was about the same with some hives on his neck and face and LOTS of pain again-- I really wish we could find the right combo to make the pain more manageable... but there is no "RIGHT" way when you are in a clinical trial-- His afternoon was a total opposite of yesterday.. He has slept and had LOTS of residual pain in the same spots he had during treatment. He did remind us before he took another nap that there was a party tonight .... he asked us to go and get his "Santa gift"--- I hope whatever it is cheers him up when he wakes up.
This week is total opposite of last week... it is hard to believe. I can help but think the radiation and 3F8 back to back are making this week extra tough. I remember this the last time we did this too.
So, 3 more days until we head home. I can not believe it-- we have been here so long I have almost gotten used to this-- and am a little nervous to pop back into the real world-- I have done NOTHING to get ready for Christmas.... and I can tell you there will not be a Christmas card this year from us--- it is one of the things that I am crossing off the list...I am secretly wising for time to stop and add a few extra weeks to this month so I can catch up---- but I know it will be January before I know it-
The bright side is there is only 2 days left of shots and 3F8 of this cycle... and that the thought of packing is not so overwhelming we are "storing" some of our stuff so we do not have to take it all home--- we have accumulated a lot of extra!!! I guess that happens in almost a month :) I think that is why I always return from NYC and purge things in my house..... :)
That is it for now---
Hoping for a calmer less painful night here in room 311---
1 comment:
We too pray for a night free of pain and worry for you all. It is very sobering to hear about your holiday days. Thank goodness for distractions and parties and Santa gifts for Grier (though I am very tired for you with all that!) May this be a dim dim memory in a few days time.
xxoo.
Ashley.
P.S. You have written all of us a million Christmas cards this year, chock full of pictures and love.
Post a Comment