Alright, alright – everyone is asking for more updates. Well, so far nothing much to say is why I haven’t updated anything! At least no news is good news. 😉 Ezra has been recovering the past couple weeks from the 5th round of chemo – which he did admirably. His labs never dipped at all, which the doctors couldn’t explain – but it’s good.

Last weekend we got bone scans done, and his bones are completely, 100% free of cancer. Wednesday, yesterday, and today we’ve been at St Joe’s getting a second MIBG scan to see the size of his main tumor. We have an appointment with Dr Kayton (the surgeon who will be removing the tumor) this coming Wednesday to go over the scans with him and, assuming all looks as good as everyone thinks it will, schedule the surgery for shortly after our meeting. We could have the tumor removed before March reaches us!

We’re working on trimming off extraneous commitments in an effort to regain some sanity in our schedules. I’ve backed out of doing the web stuff for Grace Family Church, and we’re both taking solid looks at what we give the most time to, what we enjoy most, and how we can make sure the two are the same. It’s been good, and necessary.

Oh – we found out both the twins are going to be boys. Or rather, are already. 😀 Which means… come mid-June, we’ll have 3 boys under two running around the place. Walk in the park…. 😉

I’ll have more info for you all come Wednesday!

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…

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.

http://www.youtube.com/watch?v=zSI7weyx75k

Paste that in your browser, people. Cute kid.

Ezra just finished his 4th round of chemo, and we’ll be released tomorrow to head home and let him recover. Good symbolism for us today – finishing chemo as the last thing we do in 2009, and getting to head home as the first thing we do in 2010.

Here’s praying 2010 will be filled with health, happiness, and growth in all we do.

Well we’re back at our favorite hospital in Tampa, good ol St Joes, for round 4 of chemo. This round is a nice short one – only 3 days of drugs for the little man, and maybe a 24 hour run of fluids after to get it all out of his system, maybe only 12 hours. So we should be home by Friday, if not Thursday. Hurray for New Years in the hospital! Ha – maybe they’ll let us have fireworks in the room. Maybe. Calling all smugglers….

Ezra generally takes two naps a day, but because of scheduling and such today, he missed his second, and was up early from his first… meaning he’s already asleep now, by 9PM. Nice and quiet in the room at the moment, good time to chat with all you. After the next round, he’ll (most likely) be getting his surgery to remove the tumor. Crazy times…

Christmas was great. We woke up early (yes, 8AM is early in our house) and made some coffee, hung out just the two of us, and then woke up Ezra around 930 to say Merry Christmas to him. My folks wound up arriving around 11, and we did stockings, gifts, and a solid Christmas dinner. Ezra must have had 3-4 gifts to every one for the other 8 of us. 😀 We kept most of them in their boxes, and will get him a nice new toy traded out for one of his existing ones every few weeks or so… fun for him!

I want to give a big thanks to a few people for some Christmas goodness. Rose and all the kids at Veteran’s Elementary – you guys are amazing. The photos, letters, and drawings were so appreciated – and incredibly thoughtful. We’ll be looking at them for years remembering how much all your care meant to us. Thanks, kids!

Also to our “secret” 12 days of Christmas – the secret may be out of the bag, but you guys were another great part of our 2009 Christmas, and it was a constant bit of anticipation and thankfulness in our days. Thanks!

Back to work I go… 😉

Just a quick update for everyone – Ezra is doing great, and we’re looking forward to Christmas with family and friends.

We’ve scheduled his 4th round of chemotherapy for the Monday after Christmas (the 28th). It’s a short round, only 3 days with a 4th day in the hospital to monitor and make sure he’s looking alright. We’ll get you more info then, but for now, Merry Christmas!

“Apheresis (from Ancient Greek ἀφαίρεσις (aphairesis, “a taking away”)) is a medical technology in which the blood of a donor or patient is passed through an apparatus that separates out one particular constituent and returns the remainder to the circulation.” -Wikipedia

We’re at All Children’s Hospital in St Pete as of last night, and will most likely be out of here this afternoon. Ezra is getting his stem cells harvested as I type this. The machine looks straight out of a 1968 sci-fi episode, and there’s a good 15 feet of tubing on it, with his blood circulating through. At some point in those tubes, the blood goes through a centrifuge, which pulls out the stem cells (we have been giving him supplement shots the past few days to boost those wayyyyyy up) for storage at Moffitt to use later if we do the stem cell transplant after his surgery to remove the tumor. The rest of his blood continues on down the line and back into his body. He’s all hopped up on Benadryl and morphine (as needed) to keep him still, as too much movement messes with the procedure. We started around 10AM, although we were admitted last night and we attempted to sleep.

As a hospital, All Children’s has a better room service… but that’s about it. 😉 We’re getting spoiled with St Joseph’s, I’m coming to realize. We normally do all our treatment at St Joes, but they don’t have the department to do stem cell harvesting, so we came here just for that. The rooms each have two patients – which makes it REALLY hard for Ezra to sleep (he only got a few hours last night), so we’re glad they’re keeping him nice and drowsy today – he needs rest! Otherwise he’s hearing the baby and mom in our room also the whole time, and wanting to go see who they are. These guys also lock up pretty much everything – so we have to page a nurse even to get a cup of water. 😀 No big deal, just more on the annoying side than we’re used to. Oh, and the wifi is reallllllly slow. Ha. Creature comforts missed…

Good news is this is a quick deal, we’ll be home by evening, and that’ll be the end of Ezra’s hospital trips for the rest of the year (with maybe a couple visits to get labs checked) – no more big stuff. Christmas free of medical obligations!

I’ll let you guys know how the harvest goes this evening when we’re home.

Wow, what an encouraging day.

This morning a great guy named Rick, who is an electrician, and whose wife is a cancer survivor, came to our house and did all our electrical work. Thanks, Rick – we appreciate it a ton.

Shortly after that, I got a call from the Children’s Cancer Center here in Tampa who said they’d had a ton of stuff for twins donated, and they remembered we were having twins, and wanted to give it to us. It was two matching nice wood cribs, a stroller for twins, a changing table to match the cribs, and some gift cards for us. They also had four huge trash bags full of brand new toys and wrapping paper as part of their Christmas program – I had to tie the back of our SUV down since it wouldn’t close!

The most encouraging part of the day, though, was at the Christmas dinner tonight which the Children’s Cancer Center puts on each year – this year was at the Airport Hilton. We met a couple other families whose kids were neuroblastoma survivors – one was 4 years clean with still no sign of cancer, and another was two years cancer-free. These were the first families we’d met who’d BEEN through neuroblastoma (we know another lady who is also going through it as we are), and their stories and the smiles on their kids as they ran around playing were great for us to hear. It makes it so much easier to see the healthy future when you’re looking at kids who have beat the same thing Ezra has.

We got results back on Ezra’s bone marrow aspiration he had last week, and of the 4 places checked, 3 were 0% involved (no cancer at all), and one was so miniscule they said it would have no bad effect if we harvested the stem cells now. We’ll be going in tomorrow to check his white blood cell count (goes down a lot after chemo), and IF that’s high enough, he’ll have his stem cells harvested Wednesday. They say there’s a good chance it won’t be high enough yet, and we’ll have to wait til next week. Either way is good.

After talking with the families tonight, we’re considering whether we will even go through with the actual stem cell transplants after his surgery. We may keep the stem cells at Moffit, and see how things go – they gave us the contact info to one of the top doctors in neuroblastoma, and we will be requesting copies of all Ezra’s work to be sent to her as his treatment progresses. Here’s praying we won’t even need the stem cell transplant – that’s a VERY hard procedure on him.

I definitely see God working a lot in our family, our mindset, and the people around us – and yes, even in Ezra’s health, ha – through this situation. Years from now I know this time in our lives, as difficult as it is now, will be one of the huge shaping moments in who we are as individuals, and as a family.