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.

Here come the big guns. Thanksgiving was great – we’re all Xmas’d up at the house now, giant tree, lights all over, inside and out. We had everything outside done before, and now the inside matches. 😀

Monday starts Ezra’s third round of chemo, so we’ll be in the hospital all week long. This one is a tough round: a much stronger drug will be being used. We know its going to be hard on him, and we know it’s a necessary next step. We’ve had almost a week off from the hospital, which has been good. December won’t be TOO busy medically – we’ll be in the hospital most likely til the 6th or 7th, my birthday is the 8th (28!), he’ll be getting stem cells collected the 15th-17th (if I remember correctly), and then hopefully off until January for the 4th round.

Our little man is still healthy and happy, and responding well to everything so far. Robyn’s mom is coming in the 6th to hang out a week with us. December with family and friends… can’t complain. 😉

So Ezra got his 24 hour MIBG scan yesterday, which is a scan to see where the neuroblastoma is active. We won’t get the results for a few days, but we were able to see the scan as it was happening – and it looked much less than initially, although still very visible. He’s currently getting his 48 hour scan of that (they inject the stuff and scan once after 24 hours and once after 48, then contrast the photos), and then getting a CT scan done to see the tumor size.

In other news – we had Robyn’s first ultrasound today, and we’re very excited to say BOTH ofthe babies look great! We’re having TWINS!!! Life couldn’t get any crazier!

I’ve gotta run, but wanted to share.

We’ve started our Xmas decorating. 🙂 The yard and house are beginning to look a lot like Christmas, and we’ve still got much to do! Haven’t got our tree yet… just lights lights lights. And a Christmas fish. Yes, those exist.

Ezra had a bone marrow aspiration a week ago or so, and we got results back this week. When he was first diagnosed, his marrow was 50% neuroblastoma (cancer) cells. This past aspiration they took 4 marrow samples – 2 were ZERO % involved (that’s the term – means zero % cancer cells), and the other 2 were only 10-20%! So that’s incredible news – his marrow has responded very well so far! This is great news.

Today he got injected with something called MIBG again (had it when first diagnosed) which will tell us where the neuroblastoma is active still in his body (remember, the marrow is only one of many places the cancer was, including his blood, organs, and bones). They’ll scan tomorrow and Friday, and we’ll get those results next week. I was off on the bone scan date – that’ll be next Tuesday. So by the end of next week, we should have a very good picture of what the cancer looks like now in his whole body. The bones had lesions on them from the cancer when we last checked, and the MIBG scan last time showed the cancer very active near the hips, kidney, left leg, and behind the eyes (a common area for neuroblastoma to affect, and the reason he’d been getting black eyes).

Looks like Robyn’s due date is late June, they’re not 100% on a date yet. Ultrasound this Friday should clarify that! She’s still very tired, napping a lot during the days but feeling less sick, so that’s good. I’m working late at night lately so I can have days free to visit the hospital and watch Ezra, as well as try and help keep the house clean and sane.

Guess that’s it for now… we also wanted to say thank you to whomever left us the anonymous gift through Grace – it’s much appreciated. And to everyone who’s been giving, helping, and commenting – your attention and care means a lot to us. Thank you.

Hello, it’s 2AM Monday and I’m awake getting some work done. Finding time to make work happen while also being in the hospital so much and still seeing the family… its tough! I’ve been telling people who ask, “this whole thing isn’t getting easier, but the difficulty is becoming more normal.” I suppose it’s like if the work was still as hard, but your callouses got bigger. 😀 We’re trudging through!

This week will be a very busy one – we’re in every day but Tuesday, with some slightly big procedures as well. Here’s this week’s lineup:

Monday: Labs/bloodwork. We’ll be in 11-4ish.
Tuesday: OFF!!!! Whatever will we do Tuesday?!?!?! Ezra will still be getting shots from us and have to ingest an interesting thing called SSKI which protects his thyroid from being messed up from the next couple days’ procedures.
Wednesday: Ezra gets an injection of something called MIBG, which goes through his body and is taken up only in active neuroblastoma (Ezra’s type of cancer) areas.
Thursday: Ezra is sedated and gets a 24 hour MIBG scan to see results. He’ll also be getting labs/bloodwork.
Friday: Same as Thursday, but now a 48 hour scan for a contrast.
Saturday: Bone scan. While the MIBG tests for active neuroblastoma areas, the bone scan gives an accurate view of his actual bones. The cancer initially had lesions on Ezra’s bones, and we’re hoping after these two rounds those have gone away and the bones have been able to start rebulding themselves.

It’s a crazy week!

Whoops, sorry, things have been so busy I missed posting updates for a whole week! My bad. 😉

So Ezra got out of his second round of chemo on Saturday around 2pm (5 days ago), and we came home and rested. He took this round much better. Monday we visited the hospital again to get his blood work done (Mondays and Thursdays, every week!), which was all good – he didn’t need anything, and we were able to get home by 2ish. Not bad. 😉

Yesterday (Tuesday) we trekked over to St Pete to visit All Children’s Hospital, where Ezra will be getting his stem cells harvested in 6 weeks or so, as well as where he’ll be getting them transfused back into him after the surgery to remove his tumor (4 months or so from now?). That will be an intense admission – he’ll have zero immune system, so we’ll be at All Childrens for over a month in a HEPA filtered isolation room. Whew. Not looking forward to that, but whatever it takes to get this little man well is what we’re going to do.

The drs at All Childrens were extremely informative and easy to talk to, so that’s nice. And by the time we get there, they’ll be done with the new hospital they’re building, and we’ll be staying there – so nice new digs. 😉

Ezra is still doing well. He’s strong and happy. You can tell he’s starting to get annoyed of the hospital – he cries at drs, and doesn’t like when we get out the alcohol swabs (shots!). Course, I wouldn’t either.

Robyn and I are pretty tired, but we’re also blessed with a lot of you guys’ prayer and help. My mom keeps coming around and tidying up the house, doing the dishes, putting stuff away… things that are small but help out a ton when you’re doing so much. MOPS keeps bringing meals. Some of you have brought gift cards to restaurants, which helps as well – all those dinners and gift cards also make it easier with so little time. A few close friends have stopped by to help out and just be comic relief as well. All that means more than we can say, and if we haven’t personally thanked any of you, I apologize – we’re running a bit ragged around here, and keeping track of everything is tough. We’re at the hospital 5 days a week even when we’re not admitted it seems, with meetings, labs, and other things. And a REALLY SHORT hospital visit is 3 hours… we find our free time is pretty much gone.

We seem to have the insurance taken care of – between state and federal programs, we were able to get nearly everything so far and in the future covered (from what we’ve been told). Turns out everyone agrees pediatric cancer is just plain a crap thing to happen, and a lot of programs exist to help out, regardless of income level. This has been a huge blessing to us, as bills from October alone will be well over $75,000. And there’s a minimum of 7 months, multiple surgeries, and over 2 months of admitted time ahead of us. We’re praying everything is covered, which the social workers seem to say it will be. It isn’t set it stone yet, though, and we’re also not sure about deductibles, etc. We’ll see what happens.

I suppose that’s enough chattering for now. I’m going to take my wife out on a hott date, courtesy of my mom and dad watching Ezra so we have a couple hours. 😀 Ciao.