Living In The Jaws Of The Beast

Shortly after New Year’s, Henry quietly mentioned that his head was hurting when he would lie in certain positions, use the bathroom, or play the saxophone. After a few days, he said his back hurt when sitting in certain ways, and he had to leave school early because he could not sit in the classroom chairs.

We were able to get MRIs scheduled rather quickly, but since scans of the brain and spine take so long and require sedation (and thus require scheduling an anesthesiologist), we had to schedule over two days. Early Thursday morning we scanned the brain, and the top and bottom of the spine. The middle spine area is scheduled to be scanned on Tuesday.

Since it usually takes at least 24 hours to get an official read of an MRI scan, we were surprised to get a call in the late afternoon from our oncologist. The test results revealed that while recently radiated area in the lower spine looks clean, his brain tumors (3 in number) have doubled in size since we started the new Chemo after Thanksgiving. The treatment is not working.

Friday morning we met with the oncologist in Savannah to discuss what we do now. In our current situation there is no known cure nor is there any standard treatment. There are a few protocols being used (mostly using established chemo drugs in different ways or different combinations) and a few new clinical trials coming up (including the original Duke trial -currently on hold- that we are waiting for, and a promising new trial in Chicago), but Henry's advanced state (as well as any treatments to arrest the advancement of disease) could disqualify him from most trials.

We drove home Friday at probably our all-time lowest point. As we entered the house the phone rang. It was the oncologist, who had just spoken with our radiologist in Savannah. After a few more phone calls with our radiologist we came up with a working plan. Initially, radiating the brain to treat the recurrence was ruled out, as Henry had brain radiation less than four months before new growth in the brain began to show itself. Re-radiating an area is always tricky, but never done in less than two years (more likely four years) following the initial treatment due to extreme risk of tissue death. But now that the shape and location of the new tumors have been revealed, we believe that the new tumors can be radiated without exposure to the original site. That, and Henry has shown good results from, and good tolerance for radiation. So far.

We will be in Savannah all afternoon today (Mon) for equipment fitting that will lead to a couple of days of planning for targeted radiation to the three brain tumors. Early Tuesday morning we will have an MRI to the remaining third of the spine (where we expect to find more tumor), followed by a consultation with our radiologist. Next Monday we expect to begin daily radiation treatments. Radiation will probably be administered in tandem with weekly infusions of a radiation-enhancing Chemo drug Temsirolimus. This drug, in combination with radiation, produced significant shrinkage in at least one ependy child we know of with a recurring tumor.

One can only hope (there's that word again!).