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.

We are home!

We were discharged this morning and are now home for a few weeks while Ezra recuperates and gets ready for another round of chemo. He still has his feeding tube in, which seems to be annoying him – every time he brushes his fingers against his nose he cries. We think it’s just a bit tender, as the tube itself shouldn’t hurt.

We’ve got a pump and food and bags and a pole and all sorts of stuff to be giving him food through the tube at night, as well as shots once a day, and some other medicine. He seems better already, and definitely glad to be home… but he’s still definitely recovering and easily agitated.

Visitors are pretty much not allowed in the house, as his immune system with the chemo is very weak. We’re having to wash our hands after eating before touching him, make sure we clean clean clean, and overall be clean freaks. I guess now is as good a time as any.

Even though we’re home now, we’re still going to be heavily doctor centered… appointments Monday and Wed already, as well as every 3 days to get his blood checked and transfusion if necessary. He’ll still be getting his surgery in the next couple weeks before the next round of chemo to get a more permanent line inserted into his chest. Ugh.

It’s tough. He is still our little baby, but you can see the pain he’s going through and it hurts to watch him hurt. The positive side is knowing he WILL make it through this, and seeing how strong he is even right now – laughing, crying, smiling, and pushing on. Ezra’s strength is something I’m proud of – he’s being put through stuff a kid should never have to experience, and he’s still smiling and laughing every day.

whew…

Ezra finished chemo yesterday, and today is his first day of recovery. He seems good, smiling a bit and chattering. He hasn’t been drinking at all, since they have him on fluids, but he has been starting to eat again as of yesterday. Today they’ll be lowering his fluids level quite a bit since the chemo is done, so hopefully he’ll be drinking more formula – that’s important because the formula we’ll have him on (PediaSure) is actually higher in calories than the majority of the food he eats. A ton of calories is important for him to rebuild his nutritional standing so he can make it through the various treatments and things left for him to do.

The next few days we’ll be monitoring him to see how he’s recovering – he’s still a little underweight. Pray he eats very well today; if he doesn’t get eating more we’ll need to feed him with an NG tube in the evenings (which I guess there’s a company that will come out to your house and do as well). That’s a tube that goes in through your nose and follows all the way down to your stomach, delivering food and then being removed. The nurses here will also be training us how to give him shots, as he’ll need one daily, and the various medicines he’ll need.

We should be home between Friday and Monday for the first time. The next 9 months are a rough road, but we’re trusting everything will turn out well. Over those months, we’ll be in and out of the hospital quite a bit, sometimes for over a month at a time. We’ll also be home a good bit of that time, although even when we’re home we’ll need to be bringing Ezra to the clinic or having an outpatient doctor stop by multiple times per week.

Sometime next week we’ll be meeting with a doctor from Tampa General who will the following week be doing minor surgery on Ezra to insert a line into his chest. This will be a more permanent IV-type line (as in, something to last the duration of the treatment), where doctors can run his chemo, draw blood, give medicine, and even harvest the stem cells from his marrow which will be done 6-8 weeks from now. At the moment he’s got a PICC line, which should only stay in 6-8 weeks max, but they’ll be removing it when they put the one in his chest. This carries a minor risk of infection, but is a much better solution than giving him multiple IVs each time he comes in.

He’ll begin his 2nd round of chemo roughly 3-4 weeks from now. Once that round is complete, Ezra will have his stem cells harvested from his bone marrow to use later in the treatment.

The doctors say once treatment is complete and Ezra is cancer-free, he’ll need to come in once a month for the year afterwards, every other month the 2nd year, every 3rd month the 3rd year, etc. Eventually he’ll only be doing regular checkups like any kid would.

Please keep praying for Ezra. The chemo is very aggressive, and side effects are all sorts of crazy things that /could/ occur. We’re hoping none of them do, and in a year’s time he’s a healthy, cancer-free, growing boy.

Last night and this morning Ezra was feeling much worse than he had be, which is alright – mostly just a result of the chemo catching up. That stuff can be brutal on a body, so some rough nights are normal. They checked his hemoglobin count and found it was back down to a 4.5, likely the cause of last night’s rough patch. He got another transfusion this afternoon, and will get his chemo a little late today because of that, but still on schedule.

They’re going to check his blood counts twice a day now instead of daily, to make sure it doesn’t drop so quick again. Once the chemo is complete for this round, we shouldn’t see issues, but we need to watch him closely during the treatment.

One thing they are a bit worried about is his eating – he hasn’t eaten much since last Sunday when he came in. Saturday he ate quite a good amount, but yesterday because he was feeling off he didn’t eat much. Ezra needs to get some caloric intake! They may look at some different high-calory foods to give to him over this week to help him, but its not a HUGE deal – he’s actually GAINED 3 pounds since being here.

Today has been a fairly tough day on the little man… his 3rd day of chemo, and he’s been taking it rough. Doctors say he is doing good, and this is all normal, but it sure does suck to see him hurting! He’s basically just uncomfortable. He’s been fussy and squirming most of the day, trying to get comfy and calm. We’ve let him have some morphine to address the pain, but the discomfort seems to be staying with him.

Good news is – all his vitals are solid, counts are stellar, and he’s definitely getting better. It just hurts him to do so!

Just to let you guys know, some of you have sent questions/comments-that-warrant-replies to this site, and there’s no way to reply to specific comments through this site (looks like I found my next project when I get some free time, ha).

Feel free to email us at kyle.matthews@mac.com.

My Facebook is facebook.com/kyleryanmatthews (but don’t be offended – I only add folks I know personally!). We share photos and all info on Ezra here as well!

Today was Ezra’s second day of chemo. He is doing good still, responding very well and playing, eating, and laughing. He sat in bed and watched more Elmo today and shoved fistfuls of Cheerios into his little face. 😀 We had a calm day today, basically sat around and hung out at the hospital. Slept in, got some rest, and hung out with Ezra.

The black eyes have gone down quite a bit; they’re caused by the cancer affecting the area around (and specifically behind) his eyes. The chemo works quickly to destroy the cancer in areas OTHER than the main mass (tumor), so we’re already seeing visible improvements. We’re fully believing he’ll be healed of this disease. The main tumor itself is of course also most likely shrinking, but because of its sheer size, results will take longer to see.

We were able to make it to church tonight while my mom and dad watched Ezra. Was good to see those of you who we hadn’t yet, thanks for all your good wishes and prayers…

I’ll let you know more tomorrow!

Oh – and if you cats aren’t on Facebook – guess what? We found out yesterday Robyn is also just a few weeks pregnant. What a week!