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!

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. 😉