Battling Uphill

Henry finished his first week of the latest radiation treatments last Friday. He seems to be feeling few side affects: mild fatigue and the requisite nausea (no actual vomiting).

We spoke with Dr. G at Duke and decided to start a Tarceva regimen. Tarceva, originally a lung and pancreatic cancer medication, has started being used in some pediatric head and brain cancers. It has few and mild side effects, and should not interfere with the radiation treatments.
We feel it's best to use this time as pro-actively as possible and not wait for radiation to be over before we at least make an effort to treat the systemic source of this disease.

This imperative became more obvious as Henry started feeling some lower back pain in the same place he had last fall - the same place we just finished treating. Our radiation oncologist was puzzled, as the recent MRIs appeared to show the area clear. He was going to meet late Friday with the radiologist to review the MRI to see if there is anything hiding in there. We haven't heard back from them yet; It probably got too late into Friday night. But, in the words of one of our many doctors, pain is worrisome.

On the good news front, despite the difficult circumstances and sporadic attendance, Henry got straight A's on his report card. There were a few teachers who could not give him a grade since he couldn't get enough work turned in, but once again Henry proved he can hold his own under the most challenging of circumstances.

He really is an amazing kid.

I AM

I Am - by Henry Cermak
(Click to enlarge)

Henry started radiation - for the third time - yesterday [Monday, 1/21]. There will be 25 treatments to four spots in the brain (we had been aware of three: in the 1st, second and 4th ventricles, but the radiologist found a very small spot in the 3rd ventricle as well), and tomorrow they start 23 treatments to one spot in the middle of the spine.

While we are considering possibly adding some chemotherapy during the radiation, we fear that most drugs would weaken Henry's immune system to the point that we might have to suspend the radiation until he recovered, and we definitely do not want that to happen.

Meanwhile Henry continues to feel pretty good (although the fatigue is creeping in), and when possible he gets at least some partial days at school...It seems that just when he can resume a normal schedule something happens - pain, fatigue, travel, treatments, even scheduled school breaks - that disrupt it all over again. He nevertheless shows a remarkable ability to catch up when given half a chance.

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!).

HAPPY NEW YEAR!

...And here's to a happier, healthier 2008!