Addison: Part VII

Relapsed, widely metastatic ATRT is fatal.

It just is.

Not immediately, of course; but there isn't much to do, although I guess you could argue for some palliative radiation. The chemotherapy she had continued to receive throughout the last few months of her life- the best therapy available, to our knowledge- obviously hadn't worked. In the end, with such an aggressive tumor, you sometimes have to accept fate.

I wish that Addison's parents had understood that. Sometimes I wish the internet didn't really exist; not for sleep deprived people desperately trying to fact search for a miracle drug in the wee hours of the morning, anyway.

Not that any such drug existed, or popped up in a google search. But desperate parents are, well... desperate.  And when it comes to death and dying, I've learned this lesson: you absolutely cannot make a parent who is not ready accept death for their child. No words exist in the English language that can get across the truth to a person who is not ready to hear it. In fact, many of our parents who have children with poor prognoses are conditioned by support groups or their own inner vows to adamantly reject "giving up." Some of them simply cannot do it and fight vigorously against "accepting" death. Patients themselves are often the same and refuse to hear their own CT results or discuss end of life care.

In Addison's case, her parents were not ready to accept death. Neither was her primary oncologist, who offered them further therapy. Since systemic chemotherapy hadn't worked, her doctor researched giving chemotherapy into the fluid surrounding her brain and spinal cord. It had been done a few times with some anecdotal success in kids with ATRT.

This is called "intrathecal" chemotherapy. We do it routinely for children with leukemia to treat any cancerous cells in their spinal fluid, as that fluid can serve as a reservoir for the disease. The normal method for giving spinal chemotherapy is through lumbar punctures- "spinal taps." These are very common on the oncology service for so-called "liquid" tumors.

However, this is not routine for solid brain and spinal cord tumors. And since Addison's tumor was growing around the bottom of her spinal cord, it was not even possible to do a lumbar puncture to inject  chemotherapy.

So something more drastic was done instead.

A hole was drilled in Addy's skull (called an "ommaya reservoir") to be used as a kind of permanent "brain" tap for chemotherapy.