I must admit, though, that bitterness and disappointment and just plain sadness has been my unwanted companions this week as well. I go from feeling so happy to be done and so grateful that he lived through this (our oncologist tells us that we can scratch off the 10% mortality rate attributed to the therapy), but then I think of all the pain he's been through and is still going through, and it's a little overwhelming. I've made up for all the crying I couldn't do in PICU, thinking about how much pain he was in. I just think of all the times that he just wanted to be held--I didn't know why, and I could only guess. Thinking how annoyed I sometimes got and still get that he just wants to be held all the time, but then how guilty I felt for being annoyed because this is probably the only way he really knows how to cope. I know we've had help in the PICU--that we've been looked after and supported on the other side--and I'm sure Andrew was more able to cope with his pain and discomfort with that help.
Lately we've been thinking he's nauseated, or has acid reflux, or just general malaise, and in reality, it's probably a combination of all of those. He was really really sick in bed for 3 weeks, and he didn't have anything going through his gut for a week of that, so no wonder he still feels crummy. Our oncologist told us that for adults that have been through what Andrew has been through, they feel rotten for a long time and will actually do physical therapy to undo some of the atrophy that occurs very rapidly when you don't use your body. Our oncologist expects that Andrew won't be back to normal for several months, that he'll miss a few milestones, etc. It's very nice to hear what to expect because it's been frustrating to see him regress in so many ways. He's not eating or sleeping well, and he's not interested in toys very much, but oh how we've enjoyed the sun. I'm a great believer in being outdoors and enjoying actual daylight and sunshine. I think it puts me in a better mood and helps the healing process just to be outside.
I knew that a decade ago the treatment for AML was a lot harder. I didn't realize how much harder it was, though. Our oncologist told us that kids would go down to PICU 2 or 3 times per round. Now that is truly overwhelming. They've tried in the last several years to decrease overall morbidity while still keeping their remission rate as high as they've been able to get it, and it sounds like they've been successful as far as I know.
On a brighter note, all of Andrew's counts finally fall within normal ranges. Every single one of them. Most of them are on the low end of normal, but still... normalcy. It's what we've come to be grateful for, and it's something that thousands of people struggle to return to after a cancer diagnosis. So much for which to be grateful, and the blessings just keep on coming.