I went home for 2 days and went Trick-or-Treating with the girls last night. Back to Boston today.
Ryan has developed the extensive mouth sores right on schedule. His cheeks are so swollen he looks like a squirrel with a mouth full of nuts and he can barely talk. He's unable to eat any solids at all, and is having difficulty drinking as well.
After a little negotiation (Ryan told me not to talk about hospital problems, so that's all I'll say....), he is now getting adequate doses of morphine since it's difficult to swallow pain pills. With the exception of a few meds which can only be given by mouth, all his meds have now been switched to IV.
No headaches for the past 3 days!! I think that's a record since his diagnosis. For the most part the nausea is under control.
Labs: WBC 110, Platelets 17,000, H&H holding firm at 10 & 30. I suspect he'll get platelet transfusions tomorrow.
He'll be getting another dose of methotrexate on Day 11. So the mouth sores will continue for quite a while. And on Day 11 we might start to see signs of engraftment.
Temperatures have been running 99+, with one temp of 100.3 this evening. We were told to expect fevers, so that's right on schedule, too. I'm not sure at what temp they will do blood and urine cultures and start IV antibiotics....
As tough as this is for Ryan, his age and overall health are in his favor. He's lost 10 pounds so far, and he'll probably lose much more since he can't eat now. TPN (total parenteral nutrition - giving him all his required nutrients by IV) may be necessary if his ability to swallow and take fluids continues to deteriorate. This has to be incredibly difficult for those who are older and sicker to begin with.
This is the tough stretch.
I heard a quotation from Winston Churchill today: "If you're going through Hell, keep going." And so we are.
---Barb
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