Progression of Disease

I spent so much time Wednesday morning on the phone with the discharge coordinator trying to work through getting a CPM machine for Liam. Our insurance is worse than slow moving sap in January for anything out of network. We finally agreed to pay for it out of pocket.

That afternoon we had a virtual meeting with the chief of oncology at Memorial Sloan Kettering. It broke my heart. I’d heard the words 5% necrosis; but hearing him call it progression of disease was worse than anything I’d imagined.

The growth on imaging they were assuming was from cell death was now being attributed to progression of disease while on chemo because of the 5% necrosis. It was absolutely horrifying.

We’d just done fifteen weeks of poison and it had done nothing to kill the cancer.

Worse, that meant the beast, Frankenstein, had gone unchecked.

It was high time for a repeat CT to see if it had metastasized to his lungs.

He told us they were recommending switching to ifosfamide and etoposide and that we should come to get papers and sign consent when we came for surgery followup.

It all feels like such a cruel joke. Parents sign consent, but the truth is we don’t really have a choice. There are no other options and even if you were to attempt to pursue anything else with a child, they would take custody of your child. So they tell you to sign consent, but it’s actually cursory.

It rips my heart in a million pieces to sign those papers. I feel as though I’m handing him over for words I won’t repeat here. Every chemo is horrifying, but some are worse than others. These are far more aggressive and we can only hope his tumor cells respond. But it means his body takes a more aggressive hit, too. Far more bone marrow suppression, increased chance of secondary cancers because of the DNA damage from chemo, rare but possible severe neurological damage or coma. One of them is so toxic to your bladder they have to run a protective medicine for 24 hours the days you get chemo. This is what we call treating pediatric cancer. And this is what it means to sign consent.

I asked him about Liam being a candidate for Mepact and he laughed. He’s actually a strong believer in Mepact, and it seems it was more about the difficulty of obtaining it; but the horror of that laugh still rings in my ears. Mepact is an immunotherapy that has been approved in 45 countries, but not the US even though it has shown some (not a slam dunk) help in preventing recurrence.

It feels as though someone has punched me in the gut over and over and over and over since July 29th. I’m so numb I can’t really feel anything anymore. Aside from very rare occasion, I rarely cry anymore. Everything is just numb. Except for the sucker punches in the gut. Over and over and over.

David was in Virginia when we had the meeting so we called each other after. What do you even say? What do you do? When he prayed at the end, he prayed that if it would bring glory to God, He would heal him. I cannot shake the sense that this story is more about God than anything I’ve been part of. It’s a really difficult story to live out when everything you’ve been shown on the path feels called into question.

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