Remembering Last Spring

It was a year ago last week when we learned that JR's tumor had returned and we were in the process of deciding what our best course of action would be. It is haunting me because no matter what we decided, we would never know if a different decision would have had a better (or worse???) result. We did know that it had come back quickly and was aggressive (nothing showed up in his Jan. 3rd (2008) MRI but 7 weeks later he had a marble-sized mass). We'll never know if the decision to remove the tumor right away via surgery was the best thing to do or if we should have done more exploring to find doctors who might have had success with different approaches. It made sense that if his treatment wasn't working and we were going to try a new protocol, we might as well start with less tumor rather than more. One thing we were sure of was that his doctors were doing their best and cared deeply about our son. We are fairly certain (not 100%) that his fate was sealed from day 1 but I continue to research the topic to see if there was something that I missed. When you have a team of about 12 pediatric Sloan Kettering cancer doctors from a spectrum of disciplines, from neurosurgery to neuro-oncology to neurology, etc. at your fingertips and 11 out of 12 of them decide that surgery is probably the best option, it is hard to question or challenge.
One thing I have learned through my reading is just how complex the issue of pediatric brain tumor research is. There are about 120 different types of brain tumors, and can all act differently in different host brains, especially true of a developing brain. Dr. Khakoo and I discussed some of these things over coffee that crazy Rockefeller Center day. I asked her if JR's tumor (high-grade (4) glioblastoma multiforme in his right frontal lobe) was actually more of an adult tumor since it is relatively common in adults and fairly rare in children. Her answer was careful but the message was that the tumors rarely ever seem to act the same way. I've been thinking that maybe I'm missing something here but the truth always seems to come down to "maybe sometimes" or "it depends". I saved this report I found that explained the main areas that needed research for brain tumors. It was a round table-type discussion held at a conference of all these researchers. There had to be tens of thousands of variables that needed research (that number could be naive but seems somewhat realistic). And even if the cancer presents itself as being similar to a categorized type from the beginning, it can morph and go along its own unique path - a moving and morphing target. The worst part, at least from my experience, is that this cancer can suddenly jump from one location into the spinal fluid as it rinses through the brain (JR's experience). Some strange new version shows up in spinal fluid and ventricles and meninges. I am still confused but I think it was this part of the cancer adventure that took JR's life. I remember doctors chalking things up to disease progression but the MRI's not showing much evidence. It was so maddening. It still is.
One of the comforts I had initially was that JR died peacefully and innocently and that I did all I could. At this stage, I feel far more responsible for his death and wish that I had been much more of a pit bull. Again, I'll never know if anything would have changed. There were no do-overs. One shot and I didn't get the job done. I know Jim has similar feelings of failure.
Another thing I've discovered is the absolute chaos that parents are thrown into when their child has a brain tumor. If I were to, say, discover that I was infertile, I could go to a government-sponsored website and find out success rates of doctors who dealt with infertility. A life-threatening childhood illness like a malignant brain tumor - different story. Even now that I want information that I can actually read and not fall apart (OK I fall apart every time), it is STILL not out there. I can get explanations of the brain and what the different types of tumors are, but that's it. I guess when you have such a high mortality rate, no-one wants to be the one that everyone flocks to. However, it seems like if everyone is out there trying their hardest to cure this, perhaps research dollars should be focused on certain tumor types for certain institutions. I remember one parent told me while I was in the playroom at MSKCC that her child was in for his 5 year visit (5 years is typically considered "cured") from a neuroblastoma. I think he was initially being treated at Dana Farber in Boston and was not given much hope. Of course Dana Farber is known as a cutting edge cancer center. No one told this mother that there was this crazy good neuroblastoma program 200 miles away at MSKCC where people from all over the world come. She found out by chance and it saved her child's life. I might have a few of my facts wrong but it's an example of how you go to the place that you think is the best (and it very well might be) but you have no idea if it actually is, how many cases of this they see, what their success rates are, if there are any surviving cases (a question you don't want to ask), etc. There's no central registry, no true statistics about care and medication types, on and on. You are thrown into this medical world of terms and hospitals and neuro this and that and leptomeningial and MRI and EEGs and shunts and mediports and levels and bactrim and dilantin and feeding tubes and morphine and zofran and diastat and what's that stuff called again - the one that revives you when you might not make it? I forget but know we used it once in the urgent care room at MSKCC and had it on hand at the POU. I remember the one nurse (Reese, one of my favorites) was putting a bottle of it on the shelf once and said, not on my watch. I was happy.
Some of the pediatric-oriented websites and not-for-profits will get into some detail but will quickly change topics when it comes to survival rates for a Stage 4 (even though it's called grade 4) cancer, just say that there is a significant decrease. Where to go? No info at all. Who is the best, no info. You read about surgery, radiation, chemo and perhaps a second surgery. Then you read about late effects, things that might happen to your child once they've survived and continue to age. Not much in between. Brutal stuff.
I have so many more observations to pass along, all intended to outline the things I'd like to dedicate a lot of time to changing over the course of my life. Writing these things down helps to strengthen my resolve. It's the only way I feel I can honor JR properly and to help make his brief but wonderful life have some extra meaning. I miss my beautiful boy.