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!

The urine test they were waiting on from last night was repeated this morning and came back with normal (or at least expected) results, so they began mixing his first batch of chemotherapy. The nurse just came in now and set it going. It’s a bit anti-climactic, actually, they just hang a different bag in place of his saline drip, and that’s it. There’s two different types of chemo he’s getting this round (which will be a 5 day round), and they do one right after the other, each for about 30-60 minutes. So a couple hours from now, he will be done with his first batch of chemotherapy! They’ll repeat that each day the next 4 days, and the 6th day he’ll rest here and be monitored. If all goes as planned, we’ll then be able to go home with him! He’ll recover for 3-4 weeks and come back and do it again….

He was way more alert today, which was very good to see. He smiled a few times, and was sitting up, making noises, and overall more vibrant than he’s been in a good week or two.

We’re still looking at various stages of his treatment to finalize decisions – specifically where he should get the surgery to actually remove the tumor, 5-7 months from now. At the moment the tumor is wrapped around his aorta, making the surgery exponentially more difficult than it typically is (and it’s typically a difficult procedure). We’re hoping the chemo will actually shrink the tumor enough to where it is no longer gripping the aorta, which would make the procedure that much more routine. Again, though, even routine in this specific surgery is a difficult one, so we’re praying and researching various surgeons to see what decision should be made. Good news there is we’re months out, so we’ve got [a little] time.

Bottom line for now, things are all going according to plan, and he is holding up like a mountain weathering a storm.

A lot of us are familiar with Jeremiah 29:11, which has been mentioned a few times to us lately, and as I was thinking it over, I remembered Jeremiah 29:12-14, which we’re holding onto as well for our little guy…

“11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call upon me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart. 14 I will be found by you,” declares the LORD, “and will bring you back from captivity.”

So many scriptures, promises, and hopes we’re holding onto.

Ezra’s chemotherapy was postponed until tomorrow, as there was a minor irregularity in his urine test (nothing major), so they want to double-check it in the morning before beginning the chemo.

Good news – he ate! Well, kinda. He hasn’t had any bottle/food since Sunday morning, and wouldn’t take any his whole time (although he’s been getting SOME nutrients through the IV line). Today, he actually took 3 ounces of pedialyte, which Robyn decided to try through an oral syringe instead of via bottle. This is great!

We’ll let you know tomorrow when the chemo begins.

We just spoke with the dr, and Ezra will begin his first round of chemo at 8pm tonight. During this next week, he’ll be needing a lot of rest and quiet time in his room. We’re still having friends come by, but visiting Ezra will be short, quiet visits only, with no more than 2 people in the room, and not much foot traffic coming through. Out in the lobby Robyn and I will still be hanging with friends as we get time – chatting, joking, and hanging out with loved ones helps to bring some smiles and laughter into a rough situation.

The chemo will probably make Ezra nauseous, and fatigued. He should lose most of his hair within 5-7 days, so we’ll probably just shave it for him soon (he’s very particular about the state of his hair) and keep the locks. The doctors say he should have a fairly immediate lowering of his pain level associated with the tumor, although the tumor itself won’t shrink much for a couple weeks. Somewhere around next Thursday/Friday we’ll be able to bring him home after a successful week-long round of chemo.

We are actually going to try to make it to church this Saturday, and have my folks watch Ezra a couple hours. Robyn is also wanting to try to get to MOPS on the 15th.

Well folks… good news continues. Ezra will begin chemotherapy tomorrow, and he is now been moved out of ICU status. He looks MUCH better. We’re now downstairs in room 107 instead of up where we were, so if you come to visit don’t go upstairs! His breathing tube, assistance, and 2 of the 4 IVs he had in are now removed. He has two IVs now, one in each arm, one of which is called a PICC line. This one goes into a central place in his system where the blood will be guaranteed to flow through easily, and is the line he will start receiving chemo into tomorrow.

The chemo will be various time lengths, as its multiple different chemicals they use at various stages. It is given via the IV, and will be daily over the next week, from 30 minutes to 6 hours each time. If everything goes to plan, after a week of that we should be able to take Ezra home for 3-4 weeks while he heals up from this round of chemo. During that time we’ll be monitoring him closely, and he’ll also be stopping by the hospital a few times just to be checked for fever, etc.

We’ll repeat the process over the next 6 months or so, a week in the hospital for chemo, and 3-4 weeks at home. After the 2nd or 3rd round, his stem cells in the marrow should be free of disease, and they will collect some. After the 5th round, the remaining marrow will be pretty wiped out from the intensity of the chemo types he’ll be getting, and they will transplant the stem cells they got earlier. During that month the marrow will be repairing itself. This time he will basically need to be in complete isolation from anyone other than our immediate family.

After the 6th month or so (maybe a bit more, if necessary), they will perform the complex surgery of removing the actual tumor; his body should be otherwise disease-free then. The tumor has wrapped itself around the aorta, his main blood vessel, so the chemo will be attempting to also shrink that away, as operating with the tumor surrounding the aorta is a very difficult procedure. This procedure will actually be done at Tampa General – not St Joes. While the pediatric oncologists here (kid cancer doctors) are top notch, the surgeons are more trauma surgeons than precision pediatric oncology surgeons. All the doctors here agree the best surgeons for Ezra’s situation are at Tampa General, so that is where he will receive the actual removal of the tumor.

Once that has been done, he should be in a place where he can begin getting right back where he was before al this again… growing up normally, healthily, and picking up the ladies.

Amen. 😉

The results of the marrow test and biopsy are back.

Both confirm what we’ve already thought – the cancer is neuroblastoma, and is in the marrow as well.

We will be proceeding as planned!

We’re currently waiting on quite a few things.

When Ezra came in, his hemoglobin count was 3, which should be 11. This was the reason for his pale yellowish color the past couple weeks, and the reason for his lethargy over the past few days. After one night of transfusion (he is getting very slowly transfused, as the anemia makes his heart too weak to take normal speeds of transfusion) he was up to 4.5; this morning he was at a 6.5. They are still transfusing his blood, and want that number to reach 8 or 9 before starting any treatment. He should reach that number tonight or by morning. Once that is ready, he’ll be strong enough to begin treatment.

It’s good he’s doing this, as we’re also waiting on the results of the biopsy of the tumor and the bone marrow sample that was taken yesterday – until those are back we can’t be 100% on the specific type of cancer. The doctors are fairly sure it is neuroblastoma, which is a type of cancer resulting from a tumor in the adrenal gland. The tests will confirm that – results should be here today or at the latest tomorrow. Once those come back we can begin the treatment.

Today Ezra is also getting an injection of MIBG, which is a molecule taken up by the specific cancer he has, and that will sit in his system for 24 hours while they let it be taken. Then they will take some scans to see the specific areas the disease is most active then. They will take another scan 48 hours in which will have an even clearer picture of what’s going on, as the only MIBG in his system then will be at the active points of the disease.

The timing on the completion of the MIBG scan should coincide with his hemoglobin count being high enough and getting results back from his biopsy and marrow tests, and treatment (chemotherapy/radiation therapy) should begin Thursday afternoon.

Treatment, if all goes according to what they’re thinking now, will consist of a very aggressive type of chemotherapy/radiation therapy. There will be some difficult surgery involved as well later, and some biologic work necessary as well, since the chemo is so aggressive it will actually harm some of his organs while destroying the tumor. After a few rounds of chemo, they will also be taking stem cells from his marrow. They can’t yet, as the marrow is inundated with neuroblastoma (marrow test will confirm this). The stem cells will be important later, as the continuing chemo will harm the marrow as well, and the stem cells will be important in restoring the marrow later in the treatment process.

He had a breathing tube in, although he was breathing on his own just fine, and they removed that today, and took him off the sedation he was on (that was necessary during the tests, but not now). He is more aware at the moment, but also seems to be more in pain, so they’re giving morphine through the IV.

That’s all I know for now… feel free to call, text, Facebook, or email. I’m responding most to texts 813-454-9113.

–Kyle and Robyn