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.

We’ve been in the hospital 3 days so far this round, and things are going really well. It’s the same type of chemo this round (round 3 will be more aggressive), and he’s SO much healthier and happier this time. Going into the last round so weak made it very hard on him, but we’ve been fattening him up and getting him tons of exercise the past few weeks, and it’s definitely helping him – he’s smiling, laughing, up and about, and flirting with just about every nurse he sees. We’ll address that later. 😉

He’s having a little trouble falling asleep, but only because we’re here in the room with me, and it doesn’t get as dark in these rooms as it does at home, so he just sits up and looks at us, ha. We’ve been sitting with him laid on our chest to fall asleep instead, and once he falls asleep we (verrrrrry carefully) get up and set him in the bed. Nurses still need to come in and check his vitals every 4 hours, so it’s tough to get a solid night’s sleep, but Ezra’s smiling face all day makes the lack of continuous sleep not matter.

After this round of chemo, we’ll be getting scans done to check how the tumor is responding (shrinking, shrinking, shrinking!) to the medicine, so please pray the chemo is being EXTREMELY effective. 😉

Robyn’s finally getting her first appointment tomorrow to check on the pregnancy, so we’ll maybe know a due date finally. Thinking sometime in June. She’s doing pretty well with it, just tired a lot. That woman is incredible to be able to be so attentive to Ezra and taking all this so well on top of growing our second kid!

Whew.

Yesterday (Thursday, 10/29) we went in to Tampa General at 5:30 AM to get Ezra’s PICC line removed from his arm and have his BROVIAC inserted into his chest. This was supposed to be an outpatient procedure, with us home by 11AM. We DID wind up home by 11AM – but it was the next day (today).

I’ll say it loud and clear… the surgeons at Tampa General are some of the best around, but the nurses are horrible. Our ICU nurses were much better… but my goodness. The nurses outside the OR were literally gathered around Ezra’s blood pump trying to figure out how to work the thing. And blood transfusions are a pretty standard thing…

/end rant/

Anyway, we got to the hospital at 5:30AM, and went up to the Surgery area to check in. We were then sent down to the lab so they could run his blood work, only to find the lab didn’t open til 7. We walked back to the surgery area and let them know this… so they said they’d just do the labs themselves, and set us up in a bed. Ezra’s hemoglobin was low, as were his platelets. They ordered blood to get the hemoglobin back up, which got to us around 9ish, then was done transfusing around 11am. He went into the OR shortly after (around noon, actually – doctor had to come by and let us know all that was going to happen, and wait on some platelets which they ordered at 11 to be given to him during the operation).

The idea was the platelets given to him during the operation would be enough to assist his blood in clotting. It was not. When he got out of surgery, around 1ish, Robyn was holding him when she saw he was bleeding quite a bit from the surgical site on his chest. The doctor rushed back out, and redressed the site with a few inches of gauze and ordered more platelets. By the time the platelets got there, the gauze was already soaked again. They let the platelets transfuse (nurses couldn’t figure that one out either!) over 40 minutes (although the dr had ordered over 20, but they couldn’t figure how to make the machine do that), and when the BROVIAC was still oozing, they ordered us a room in the ICU.

We wound up down in the ICU around 6ish, and Ezra got more platelets and plasma as well (both assist in clotting), and stopped bleeding finally around 7. We stayed the night in ICU to make sure all was well, per the doctors orders. Come morning (this morning), the dr came by around 8am, redressed the site and checked to make sure there was no new bleeding – there was not! We were discharged at 10, and home this morning around 11, BROVIAC safe, and Ezra home.

He didn’t eat at all yesterday, except for a popsicle and ice cream which he threw up as he wound up eating them too fast it turned out.

Yesterday was a scary and frustrating day, ending in a good result. We’re most likely still getting Ezra’s tumor removed at Tampa General as the surgeons there are the best in the area, but I will be requesting we move to either ICU or a room immediately after for recovery rather than deal with those surgery floor nurses. Competence with the equipment is a must in my book. 😉

We are tentatively scheduled to begin his next round of chemo this Monday (meaning we’ll be admitted for a week or so back at St Joes), although the infusion people there are thinking that will probably be rescheduled to Thursday of next week if his platelets are still low on Monday.

Well… we knew it was gonna happen, and tonight we did it. Ezra’s hair had been coming out like crazy today (normal reaction to the chemo), so rather than have him look all thin-haired and sickly – we shaved it off!

Turns out he has a wonderfully shaped head.

Check the photos…

Ezra was great today for his blood work, he needed no transfusions, can keep the feeding tube out, and is looking good. However, his platelets were down still (but up from last week, which means his body is now replenishing them on its own), so we’re moving the minor surgery he was having tomorrow to some time next week.

It’s been a great 4 days since we posted any updates. We’ve been home this whole time, and while we’ve been to the hospital nearly every day for hours having appts and consultations, we’re still able to come home at the end of the day. Ezra has been looking healthy, happy, and energetic. We know as he goes back for more rounds of chemo his demeanor will change a bit as the chemo weakens his body each stage, but it’s really encouraging to see how well and fast he’s recovered even from this first round.

Today we had a meeting with Dr Mark Kayton from Tampa General (on Davis Island, somebody ask Derek Jeter if we can stay at his place when we’re down there ;). Dr Kayton most likely will be the surgeon removing Ezra’s tumor from his abdomen when it comes to that point in his treatment. This was our first time meeting him, and he seems like a solid, good guy. Everything we’ve heard about him is good, as well, so that’s promising. We may or may not be going in Friday for a relatively minor surgery to insert Ezra’s Broviac line (like an IV, but semi-permanent, year or so or until treatment is done) in his chest. To do this, they make a tiny incision in Ezra’s neck, then insert the line, and tunnel it down through the skin to come out near the center of his chest. There will be nothing visible other than a slight scar on the neck and the line from his chest. You don’t see a line in the neck, although that IS where its connecting to his main vessel. The reason for this operation is his current PICC line method of IV is only good for a few weeks at a time (so we’d be getting new ones in the other arm 8 times at least during the treatment), is more apt to get infection, and more likely to be pulled out accidentally by being jarred, grabbed, etc. Because the Broviac line is tunneled through his actual skin, it is more durable, and much less likely to get infected.

Tomorrow Ezra will be getting his blood work done (which he gets every 3 days now). His platelets have been low since the chemo (a common and expected side effect of chemo), and he’s had to get some infused often. Platelets assist in clotting. If the platelets are STILL low tomorrow (possible), we will put the insertion of the Broviac off until next week so his blood can get back to healthy. If his platelets are good, we will move forward with a morning surgery on Friday to insert his Broviac. They will also then remove the PICC line from his arm, as the Broviac negates its need.

Last night Ezra must have pulled his feeding tube right out of his nose in his sleep, because around 5AM he woke up crying, and when we went in he was soaked in the formula that was being pumped in the line. 😀 We went ahead and left it out until tomorrow when we go in to the dr, and we’ll see if they think he still needs it. He’s been eating very well, but still not taking a bottle (which would be nice, since formula can have so much more calories than food). He IS drinking juice now just fine for the most part, which is also encouraging. Hopefully his eating will be enough now that they don’t think the tube is necessary to stay in – neither of us like it at all, although we’ll do wtvr is necessary to get our baby healthy and happy.

On the financial side, if you didn’t already know, our Medicaid ran out 4 days before Ezra was diagnosed, so we are without insurance. We have applied to be reinstated, and I’m getting various answers depending which hospital/DCF person I talk to about whether it will happen. Our income is now well over the Medicaid limit, but some of them have said when the child has cancer there are different rules. Either way, we’ve also applied for something called KidCare which is a guaranteed acceptance, but it isn’t retroactive and (like everything else) takes 4-8 weeks to process – so anything from when we first went in til around December 1st would be our financial responsibility. And hospitals aren’t cheap. Obviously we’re hoping the Medicaid people will be lenient and let us be approved, as we already had it and it’d be nice to get the retroactive coverage. I literally had a few different insurance pamphlets on my desk the day we brought Ezra into the ER, as I knew we were now out of insurance, and figured a week or two gap in between Medicaid running out and his new insurance kicking in would at most mean I had to pay for a couple pediatric appts out of pocket… boy was I wrong. Somebody buy the movie rights. 😉

So bottom line on finances, which I only bring up because I have had a decent amount of people ask how they can help out financially, is at the moment we’re not sure we need any help. I’d hate to accept anything if I can handle it myself, which is my plan. However, if it winds up we can’t get coverage, hospital bills can very quickly for these two months get quite high, and we may open up some sort of trust for Ezra’s medical bills, etc.

Thanks again for all your prayers, it’s apparent in his demeanor and the attitude around the house it’s helping. Also a huge thanks to MOPS for bringing us meals ever since we got in the hospital. You guys are all incredible.