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.
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
And uneventful is awesome.
“Hey Sam, how is teen age?” … “looks like prison to me”…
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!