Been a little over a week since I last updated.. no news is good news. Everyone’s been bugging me for an update, and I noticed I was getting to the point where more people were asking me how things were than conversing about what’s going on… so… update! It was time today anyway…
We were admitted this morning to St Joes for round 6 (final round) of chemo. This is the last round of chemo Ezra will do in his treatment! We’ll be here til Sunday, and then home for a solid month. I’m looking forward to that – I need some slowing down. Near the end of that month off (probably the last week), we’ll start coming in for scans again, which will be leading up to his stem cell transplant.
The stem cell transplant will be an intense 4-6 week process at All Children’s. For those of you who haven’t caught it before, here’s a brief explanation of what it is and why it’s so long. A stem cell transplant actually consists of an extremely high dose of chemotherapy which completely destroys his immune system. NOT weakens it, as previous chemo has done, but eradicates it. He is then injected with stem cells from himself (taken after the 4th round of chemo, when his blood was cleared as having no cancer), which go to work rebuilding his immune system. The majority of the time spent in the hospital is simply recovery while his body is rebuilding it’s defenses. The actual chemo part of that (ok, so this 6th round we’re in isn’t EXACTLY his last round) only takes a few days.
After his stem cell transplant is completed, he’ll be officially CANCER-FREE, in remission! From there we’ll move to “after-care,” which will include some radiation of the tough spots during this treatment (liver), and an antibody called 3F8. These are after-care treatments which lower the risk of relapse considerably.
Ezra is recovering well from the surgery – he’s got a wicked sweet scar which will help him pick up chicks on the beach when he’s older (amen?), and although it still hurts him (it’s been two weeks today), it’s looking good. He is able now to walk again as long as he’s holding onto something. The chemo may slow down the recovery, but I’m predicting by next weekend he’ll be walking around again on his own and running again soon after. It was a huge surgery, so a few weeks to recover is expected.
Charley is at All Children’s still, and things are looking well there also. Today (Thursday, April 15th, tax day – I should turn mine in, since they’re sitting on my desktop finished) is his 1 month birthday. The brain shunt was successful – they had a couple days this past weekend where they were unsure, but now have verified it’s working well. It makes his head look a little funky. 😉 He’s too small still for a typical permanent shunt, so they’re using a kind they do on preemies, called a subgaleal shunt. Instead of draining the fluid into his abdomen, a subgaleal shunt drains it into his scalp, where it’s then absorbed back into the body. This leaves a large, weird bubble on the side of his head, and he looks a little like an alien. Well, an alien with a lump on his head. Before he’s released to come home he’ll be big enough to put a permanent shunt in, which has no noticeable outward effect at all – and the subgaleal will be removed. No alien baby at home… dang.
Charley also has a heart murmur, called a PDA, which will need to be “ligated,” or closed, soon. This will probably happen tomorrow, or Monday. We’re waiting to hear from the surgeon on that, but it’s an extremely minor surgery – 20 minutes or so. Shouldn’t be a big deal – and from there, he is good – just starting feeding and getting him fat and healthy, ready to be taken home around June. He was born 1lb 15 oz, and last time we asked for his weight was Monday – 2lb 10oz! Once he starts being fed more than IV nutrition, he’ll get to be a fat little porker in no time. 😀
Anyway, it’s nearly 2 am, and the nurses keep coming in, and they will keep doing so all night, and I just want to sleep. Sorry, no words of wisdom tonight, I’m PLUM TUCKERED OUT. So… I bid you all a fond farewell, and look forward to your comments. Robyn and I both have read all 1130 comments so far on these CarePages – you guys are great through all this…
–Kyle