home and rest

We got home from the 5th round of chemo Friday afternoon, and Ezra did very well once again! It was Gasparilla week, which for all you non-Tampanians is a festival/parade Tampa does… which basically features pirates and beads. The hospital had all the kids who were there put together a big parade with floats made out of hospital beds and wagons… and Ezra led the parade! I’ll upload a couple of photos here on CarePages. Pirates were all over the hospital this week.

My mom was great as well this week – staying the night Thursday night so we could go home and sleep while Ezra did. It’s impossible to get any rest in the hospital, as nurses are coming in every few hours, Ezra’s diaper needs to be changed every other hour (the chemo drugs are in his urine during the treatment, and shouldn’t sit on his skin for long), and there’s two of us sleeping on a plastic couch smaller than a twin mattress. So thanks, mom, for the rest.

We spoke with the drs a good bit this week, and it looks like since Ezra was stage 4 when he was diagnosed, we WILL be doing the stem cell transplant after the surgery. Surgery to remove the tumor is most likely going to happen within the next 2-3 weeks – soon. It’s a long surgery, 8-12 hours, and complicated. Please pray this will go well – I’ll have more info to share once we get it actually scheduled, and again when we come to it.

Robyn’s mom flies in tomorrow from Seattle (she’s been here a week or so out of every month since Ezra was diagnosed), which will be good – she’s also a big help when she’s here. Thank God for moms.

Robyn has become a regular social worker/encourager at the hospital – every time we go she disappears for a couple hours at a time, and when Ezra and I go to look for her, she’s always chatting with some mom who is just finding out about THEIR kids’ cancer. They have that same look we did the first couple weeks – shock, haven’t slept in days, overwhelmed. And Robyn talks to them, sharing her feelings she felt, how much we’ve learned so quick, and answering questions/offering her number. Good woman.

Thanks for all your prayers…

Chemo Round 5 Next Week

Well, we were all scheduled to have Ezra’s 5th (and perhaps final) round of chemo start today. We got to the hospital (St Joe’s) this morning, and had his labs done. Turns out his numbers were a little lower than they’d like to start chemo (completely normal, nothing to worry about, just means we wait a few more days to let his body recover a bit more), so we’ll be going in a week from today (next Monday) for chemo. This is actually good news, because he’s been eating like crazy and very energetic and playful the last week – so it just means we’ll have another week of good times fattening him up. This round’s chemo drug is the same as the 3rd round, which is one that gets him sick, and he doesn’t eat very well – so as fat as we can get him going in is good. 😀

It still looks like after this round we’ll be getting the surgery to remove his tumor, sometime in mid-February. Could it be over then? There’s a few different medical options after the surgery, which we’ll discuss with the drs more once the surgery has been done and they can see all the results of scans and how the surgery itself went. We may wind up only having to keep an eye on him and have a few drugs he takes over the next few months – nothing requiring being admitted – then just monitor for a few years and make sure it’s gone completely! Amazing.

There’s a few strange feelings we get around this time. On the one hand, it almost seems its been too easy – not that it’s been a walk in the park, but we’ve been extremely blessed to have solid friends and family around us constantly picking up the slack where our strength/time/energy fades. The possibility we’re only a few months away from this being over (at least this chapter) almost leaves a guilty feeling it should have been harder. But if I look at the events, feelings, and struggle it’s been so far and still is, I realize it IS hard – it’s just our joy remains even when our happiness doesn’t.

Doubt still creeps up on me in the most random moments, and there’s times I’m mindlessly going about my business when I suddenly am sad, or nervous… the overwhelming feeling which remains constant though is a faith God’s aware of Ezra, Robyn, the twins and I, and holds us in His hands. That’s the strength I lean on, and that’s the source of the joy we live with regardless of the crap on our boots as we walk. Circumstances are temporary.