It doesn’t feel like day 8. In some ways, things are going very well here. In some, they’re very hard.
Ezra finished his chemo Monday at around 2 in the afternoon. That doesn’t mean the EFFECTS stop though, the worst of the effects from it will be this weekend and Monday. He’s been throwing up during the days the past few days, and just today we started seeing the first of the mouth sores (which are called mouth sores, but actually can go all through the mouth, esophagus, and allllll the way down the GI and out…) as well. He’s been given some drugs which will keep those to a minimum, but they’re a guarantee for every transplant patient, and his started today.
Overall Ezra’s demeanor is good – he’s very low energy and it’s hard for him to eat, but he is still cuddly and talkative. He spends a lot of time laying on the couch (or sitting up as much as possible) watching various Elmo DVDs on Robyn’s laptop. Today they are starting him on TPN, which is nutrients delivered via IV. It’s harder for him to eat now because of the mouth sores – hurts to swallow (or even have food in his mouth), and the chemo effects make him nauseous as well, which makes him not want to eat. He’s on a continuous (as in, the entire 4-6 weeks) IV of a drug called Zofran which cuts down the nausea as best as possible.
Before this stay, he hasn’t had to get any blood or platelets in nearly 4 months (other than for the surgery, which is normal) – and he’s already had to get platelets twice and blood once. The chemo is very intense, and the effects are obvious.
Tomorrow (Thursday) he’ll actually get his stem cells back. It’s less than half an hour to actually get them back in – they simply get a syring full of his stem cells, pop it in a pump, and set it for 30 minutes. They take 3-5 weeks to do their magic and rebuild the immune system. He’ll still continue to get sicker for 4-6 days before he gets to an upswing. The stem cells are weird – they make his breath smell bad, like a sickly garlic. The drs recommend we get a bunch of oranges from room service and slice them and place them around the room to cut the smell. This lasts for 2 days.
Being here is a weird feeling – it’s both extremely relaxing and extremely scary at the same time – a really strange combination. On the one hand, we’re essentially locked in a room with just the 3 of us, spending time together, getting caught up with work, and cuddling with our oldest son. On the other hand, he’s puking and sick, tubes everywhere, and we’re watching him the sickest he’ll ever be. He doesn’t play or laugh much, as he’s just feeling so out of it. We set him by the sink once or twice a day and let him play in the water, which he likes. (I uploaded a picture here – did everyone know there’s pictures here?) It’s all for a good end though. And it’s going by quicker than we’d thought, so that’s good.
Days kind of just melt into each other. There is no night or day in a hospital – there’s vitals every 4 hours (yup, even at midnight and 4 am), and medicines and things at all certain times. So you quickly learn to switch the way you sleep. There’s no such thing as 8-10 hours of sleep – what happens instead is three or four 2-3 hour naps through each 24 hour period. When there is time, we sleep.
Charley is doing well still – over 5 and a half pounds now. He had yet another brain surgery yesterday which installed a lower-pressure shunt. His was draining well, but not at a fast enough rate, so they put in a top which requires less pressure to drain (since his skull isn’t fully developed yet – babies aren’t until a little after they’re born – not enough pressure was being generated), and now it is working beautifully.
The nurses and doctors are great here, and we’re holding up. I’ll keep you all informed… keep praying…