Steven and Sean on the Polar Bear Cam
Steven and Sean on the Polar Bear Cam

Tuesday, October 07, 2003

Our Deal With The Devil...

We signed the consent forms today.

Marlo Thomas was at the solid tumor clinic today at St. Jude's, filming stuff for a TV special that will be used for fundraising. Steven and Sean were sitting in the room in the area that was being staged and filmed.

Maybe they'll be on TV at some point.

Steven's tumor samples had been sent to Dr. Burger at Johns Hopkins by our local oncologist in San Diego, Dr. Burger being a bigwig neuropathologist. Our doctor at St. Jude's, Dr. Gajjar, called him to find out the results. Back and forth, no formal findings, seems like he is going to call it a malignant glial neuronal neoplasm.

It still looks like this high grade astrocytoma, but is not acting like one. It has PNET cells, but is not a run-of-the-mill PNET.

What does this mean? Well, we decided that since it looks like it has PNET cells, and PNET's seed through the cerebrospinal fluid, so we've got to go ahead with the whole-brain/spinal radiation. Since they are using a lowered dose, we've got to go ahead with the high-dose chemo to offset that risk.

What if the tumor is indeed part high-grade astrocytoma (the same tumor our niece Kyra had)? The chemo used to treat the PNET won't be effective for astrocytoma/glioblastoma. But the radiation will be effective. The whole-brain radiation wouldn't be indicated, but he will be receiving focused radiation to his tumor bed as well and this would be the treatment for glioblastoma. Dr. Gajjar tells us that there are really no chemos effective against glioblastoma anyway, in his words, "it's all holy water".

This being the case, we signed our consent to the forms permitting St. Jude's to begin radiation. They whisked him off for his first radiation treatment before the ink was dry.

This time he was face down for an hour. He laid so still that as I watched him on the video monitor I kept feeling that I was looking at a still photo, the only thing that indicated I was watching a video was the techicians in the room positioning him and switching around the radiation shields. I know in my own mind I could never be that still for that long if I was in his position.

The technicians explained everything to us as I watched tearfully, trying to stop the flashbacks of my niece Kyra going through the same thing at age 4. We never envisioned going through it again with him.

We've got cream to heal any burns and irritation to his skin. He takes zofran to prevent any nausea.

One treatment down, thirty to go.

I just can't stop this feeling that we've just sold our souls...

- Kathleen

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