Uneventful couple of days

Sunday, March 26, 2023 · by John Lilly
Life has been better for Sam since the end of the radiation -- fewer & milder acute issues, but just generally feeling nauseous and crappy, and getting pretty bored and antsy at the prospect of spending the next 4 weeks in this room. He's really working on getting to go outside on the patio, etc -- but no dice. He really won't be anywhere outside of this room, even in the hospital, for the next few weeks. It's a lot to ask of anyone, especially a normally active & energetic teen.

As far as medication, we're on the second day of 4 of fludaribine. It's an anti-cancer chemo drug called a purine analog, and it affects cancer cells at the DNA level both dividing and at rest. That's kind of all I know about it! No rabbits or horses this time. But he'll get this tomorrow & Monday, then something new on Tuesday, then Wednesday is the big day for transplant. 

In the meantime, I brought in his gaming PC today, in a move we may regret! Once he wakes up we need to figure out how to get it set up in an only mildly inconvenient location in the room and onto the network. He'll be happy to get some Overwatch time with his pals. 

If anyone has creative ideas for funny stuff to put up in the room or things to do, keep 'em coming. My shipment of a variety pack of googley eyes arrives tonight, which he'll roll his eyes at, but will make me laugh a thousand times during April. He may have higher standards than me.

Otherwise: steady, steady, steady.

Kathy was with him over the past couple of days and here's a convo that she reported from last night that has been stuck in my head since:

Sam: "I don't like being sick."

[pause]

Sam: "I'm almost not sick."
Yep. That's the whole thing.

LFG.
♥ 46 hearts

21 comments

John Lilly · Sunday, March 26, 2023
You’re closer to not being sick every day, Sam. Hang in there.
Suchi Sairam · Sunday, March 26, 2023
One day closer to not being sick, Sam - you are amazing! ❤️❤️❤️ #TeamSam
Dana Lilly · Sunday, March 26, 2023
Sam, four days to go, and then some gaming time with your pals while you are stuck in the room. Crush it!!! Hang in there!!! Sending lots of love and hugs ❤️❤️❤️
Dawn Robertson · Sunday, March 26, 2023
Steady, steady, steady. Love you guys.
David Hornik · Sunday, March 26, 2023
Almost not sick is huge. Onward!
Bryan Rollins · Sunday, March 26, 2023
I still think a huge pink stuffed teddy bear - i.e. fill the room with things every teenage boy would get annoyed with. Or maybe wikibear would be better? Maybe turn his room into an escape room - i.e. once he solves all the puzzles he gets to leave. I guess it sort of already is one...?

And uneventful is awesome.
Erin Hoffmann · Sunday, March 26, 2023
All the vibes, guys. <3
Blake Korb · Sunday, March 26, 2023
Hang in there, Sam -- almost not sick <3 Let us know if you want to do another Jackbox games session!
Sean White · Sunday, March 26, 2023
100% googley eyes
Marie Crawford · Sunday, March 26, 2023
Almost not sick. Go Sam, Go!
shelley watanabe · Sunday, March 26, 2023
Thinking hard to create a good box of goodies to send.
Jennifer White · Sunday, March 26, 2023
The computer and that connection to his friends will help so much! As will the googly eyes. Clearly!
Andrew Korb · Sunday, March 26, 2023
What a great kid. Hate to be so full of cliches, but those are the words that pop into my head. Great mom and dad, too.
Helen Yeni-Komshian · Sunday, March 26, 2023
Go Sam!!!
joelle kaufman · Monday, March 27, 2023
If it doesn't make him nauseous, the Oculus Quest is a fun way to escape the confines of a room. So hard to be locked in a room for 4 weeks - especially for an active teen! Good luck to you all.
Frederic GARDERES · Monday, March 27, 2023
Hard for a teen to be locked up…after having been locked up for a year for CV19.
“Hey Sam, how is teen age?” … “looks like prison to me”…
Jim Mack · Monday, March 27, 2023
He shows strength and courage few have or will ever see….Go Sam!
Michelle Stewart · Monday, March 27, 2023
Googley eyes!!! Brilliant!
Maria Brown · Monday, March 27, 2023
You guys have got this. We're cheering you on.
Decor for room: Maybe a poster you can put together for him with family/friends photos? Matthew had one in his room for the weeks he was there and it was comforting for him to visually see his support team on the wall. Happy to create this if you send m e photos! Also, a FB group with silly things his friends and family members can share with him, in writing and super fun: in video!
shelley watanabe · Tuesday, March 28, 2023
As always….sending Love and good vibes your way.
Cynthia Harris Perazzo · Wednesday, March 29, 2023
Mad Libs. My Z played hours of Mario Kart at CHLA. #TeamSam