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.

So we’re home from chemo round 3, and all’s pretty good as far as Ezra’s health goes. He is still getting his appetite back, which is normal after each round, but is eating alright, and keeps walking, playing, and smiling. Yesterday he had another bone marrow aspiration done, so we’ll find out by Monday (hopefully before) if his marrow is clean of cancer (which the dr’s think it is now) and we can harvest stem cells next week. That’ll be mid-week, assuming it happens, and will take the better part of Wednesday. Good news is, Ezra doesn’t have to be sedated at all for that – it doesn’t really hurt. They’ll keep him tired, because he can’t move around too much (he has to stay in his bed the whole 8 hours or so), but awake. Naps are fine. Basically, it should be a relatively easy and calm day. Here’s praying it will be…

Robyn’s mom has been here this whole week, which has been awesome – THANKS, VIVIAN! She’s been watching Ezra and helping out each day, taking a big load off our shoulders. She loves taking walks with the little man, and she had a hilarious story the other day. She was taking Ezra to “the chicken shack” (what she calls Checkers for some reason, haha – there’s no Checkers up north where we all hail from), and got to talking with the lady behind the checkout window. The lady asked how old Ezra was, and Vivian said 15 months. “No hair by 15 months eh? Wow!” said the lady. Vivian had been talking to the lady a while so mentioned, “well, actually it’s because he’s a cancer baby. Normal for him…” and the lady said “Really? Mine was a Saggitarius and had a full head of hair well before that! Isn’t Sagittarius right after Cancer?”

hahaha… oh, Checkers lady.

Starting to feel a little of the wear from the day to day constant schedule, but we know God doesn’t throw us more than we can handle, so we’ve been asking for that strength. I’ve been telling people, within the giant bubble of “cancer sucks, why does my kid have to get it?” things are actually going pretty good – it’s just a lot at once, especially with Robyn being pregnant with twins as well!

A few years from now, I bet we’ll look back on this as a great time in our life, albeit a hard one. Seeing everyone come around to help, and hearing all the encouragement really is good – and I know the struggle mentally as well keeps us focusing on the things that are good in life, and holding even faster to those things. God is still good.

Friday, which means Finalday of Round 3 of chemo. So far other than one throw up in the middle of the night (after which he went straight back to sleep without issue), there’ve been zero complications. Ezra has more energy than either of us, and just wants to be home and off this IV leash. 😀 He’s walking as of this week – not perfectly, and still prefers to crawl as its much faster for him, but can walk around without falling pretty well now. Thighs of steel. Or thunder. You pick.

Assuming all goes well, we’ll be out of here in time to eat the garlic lime chicken Kim said she’s bringing tomorrow all cozy at home. Ezra will have another bone marrow aspiration done the 10th to verify this round did in fact destroy the last remaining cancer cells from his marrow, then a clinic appt at All Children’s on the 15th. If the CD34+ count is good (a solid indicator of stem cells being present and active), he will be admitted to the hospital that evening and the apheresis (stem cell harvesting) will begin around 8:30-9am on Wednesday the 16th. That lasts a day or so, and then we’ll be all done for December (hopefully).

On another note – the hospital cafeteria is not that bad, and I just got a cup of fresh chili, whole grain bagel and cream cheese, and two slices of toast for $2.84. Sweet.

it’s funny how little you realize the differences some of these cancer foundations make until you’re actually in the middle of it. of course i’ve always known “kids with cancer” is a major heartbreak, and great cause to donate time and money to, but i can guarantee you I won’t think the same (and already don’t) after all this.

the difference a smile, quick help, or even giant party makes in the day and moment of each of the kids here is lasting and important.

today the “make a wish” foundation held a Christmas shopping party in one of the large rooms at St Joes. Santa was there (pic in the Photo Gallery up there /\ /\ /\), and there were tons of volunteers in little elf hats giving out gifts and candy canes and juice and such. Ezra was pointing at everything and pretty much shouting “oooh!” “ahhhh!” and laughing. the hospital is a boring place in its best of times, and downright miserable at others, when he’s feeling blah, leashed up with an IV (or two), and stuck in his room feeling crappy. moments like today’s party take a solid chunk out of the day’s “wear you down”-ness, and are great. and there’s so many kids here… and this is just one of four hospitals in the area… geez. if you get spare time, i recommend you volunteer somewhere – i can tell you it matters. doesn’t even have to be hospital… just get out and help folks who could use help. good times.

Ezra is still happy as a goat (a very happy goat) and continues to attempt to make every nurse in this hospital his girlfriend. he’ll start his chemo drip in about 40 minutes for today, and finish it up right at 9ish, just in time for bed.

Alright, we’re finally settled in for round 3 of chemo for the little man.

We came to the hospital Monday morning around 11, and waited a few hours while they ran his labs to make sure he was good to start chemo, then were told he’d need a kidney scan as well before he could start… which they wouldn’t be able to do til Tuesday (hello, scheduling snafu. holla for saying snafu). Of course this was a bit frustrating, since if we didn’t need to be there til Tuesday, we would much rather have been at home where Ezra sleeps soundly and there aren’t nurses and techs coming in and out of the room constantly. We wound up heading home at 3ish to let him rest and play and me get some work done while Robyn did some grocery shopping – then came back to the hospital around 11pm since they said if we didn’t get admitted Monday officially, there was no way to guarantee us a room on the floor since they’re pretty booked up (only one empty room right now – sad). That was alright, although of course the 8am techs woke him up. 😀 Sleep in the hospital is a rare thing…

That being said, ha, it’s 1:35AM right now and I’m just getting around to getting out an update, after finishing work for today. Lindsay Tracy was great and stopped by to watch Ezra while Robyn and I went on a date to a movie (after having some dinner Kristin brought!), and my folks also stopped by for a few hours to let us nap. Thanks, guys! Time to rest and be with each other is important, and tough to get with our current situation. Hopefully we remember to say thanks to all of you in person, but things tend to get hectic here with little sleep and so much going on, so please just know we’re extremely thankful to all who help out in any way. 😀

This round of chemo is a more intense one for Ezra. It’s only 4 days instead of 5, so we should still be home by Monday, but one of the two drugs being used (Cisplatin – platinum based, interestingly) is much harder on him. We haven’t seen those effects yet, as they take a day or two to kick in, and last a day or two after the treatment, but its mostly heavy nausea, which also makes him less interested in eating – not great when you’re 20 pounds. 😀 Good news is, he’s about as strong as he’s ever been, and happy and full of energy, so he’s got a lot of energy and nutrition to fight this feeling with.

The results of Ezra’s few scans he had before Thanksgiving are all back, and are all positive – reduced size of tumors, some of the smaller tumors gone, and bones nearly free of cancer. We’re moving in the right direction.

Robyn still feels very tired and gets a few headaches from the TWINS in her belly… but we’re almost 11 weeks into the pregnancy, meaning 2nd trimester is coming soon which is much better on her. We’re self pay on that, and the twins make for a more expensive bill… exciting. 😉 Oh, that reminds me – are any of you electricians, or know a good one who can get us a fair price? We need some basic wiring of switches done (they’re already wired, but don’t work for wtvr reason) and I don’t know any electricians. 😀 Comment away, or shoot me their contact info to kyle.matthews@mac.com.

Alright, I’m going to get a few hours of sleep in before morning comes! It’s encouraging to hear all your prayers, words, and comments… thanks guys.