in General

Tuesday, 12:55PM

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

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