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

Hello Everyone –

We wanted to set up a webpage to keep everyone up to date on Ezra Matthews’ condition. On Sunday, October 4th, Kyle and Robyn took baby Ezra to the St Joseph’s Emergency Room. Kyle and Robyn had been taking Ezra to the doctor during the past month trying to determine the reasons for his crying. The doctor’s diagnosis is cancer. He has a tumor in his abdomen that has affected his kidney, liver, adrenal gland and lungs. The doctors have done two biopsies with the results coming in a few days. He had 2 blood transfusions last night and today and they are determining when they will start chemotherapy.

Baby Ezra needs a miracle and our God can provide that miracle. Please pray for the Lord to touch his little body. Also, please pray for Kyle and Robyn as they walk down this road with the Lord by their side guiding and leading them.

“For I am the LORD your God, who upholds your right hand, who says to you, ‘do not fear, I will help you.’” Isaiah 41:13

“I have called upon You, for You will answer me, O God; incline Your ear to me, hear my speech. Wondrously show Your loving-kindness, O Savior of those who take refuge at Your right hand.” Psalm 17:6-7