Tuesday May 24th we went to see Dr. Douglas at the Proton Beam Institute in Bloomington Indiana. We knew going in that this would be a dismal appointment but felt this was a much needed step in our attempt to gain as much knowledge about our options as possible.
The clinic itself is wonderful. Its new, up to date, and generally you get a "homey" feeling. I even talked with a mom in the playroom whose little one was just diagnosed 4 weeks ago and just started focal radiation. They too see Dr. Shih and we were just chatting about cancer and Riley in general.
We got into our exam room and sat down with a doctor and a Resident. We discussed Keegan's past medical issues and current issues. We discussed things he is able and unable to do at this time and a general "look over" as to his current health concerns. They left, went out and looked at all Keegan's MRI's and scans and brought Dr. Douglas back to the room about 10 minutes later.
Dr. Douglas is a previous pediatrician, a previous Pediatric oncologist and now a pediatric radiologist. He seems to be a very brilliant man with lots of insight into medulloblastoma (he has been working with Pediatric cancer for 30 years).
Right off the top he warned us that doing full brain and spine radiation right now at this point in time will lower his IQ 30 points. That is ALOT and quite frankly, I was flabbergasted, but nonetheless we kept conversing. He said the longer we can wait on this full brain and spine radiation the better, just by getting him to 3 years old the difference in IQ effect is tremendous. Instead of 30 points it would only drop 20-25 pts. While that is still more than we would like, this is our best bet at beating this disease. Which I believe is still only 50/50.
So let me explain this IQ drop a little more. So what they are telling us is that he will be able to do what he can currently do at the time of the radiation. What will be a problem, will be gaining future knowledge, functioning, and life skills. So if we can get him to a walk, talking "average" toddler state before we have to radiate, he has a better chance at a more "normal" life.
This is the most severe side effect of this type of radiation, and the biggest factor as to what we decided to do. The doctor assures us that he won't loose his personality and when asked about his quality of life he couldn't really say because that is all Keegan would really know. He wouldn't remember the "before radiation" days. I don't know how I feel about this, yea its good he will not remember how he "used" to be, but not being able to really determine what kind of quality his life would be for however long is real tough.
Some other side effects of Proton Beam Radiation are inability for the spine to grow correctly thus having a shorter torso. I don't think its anything major per sei but I think its enough they need to tell you it can happen. Since we would be giving a large dose of radiation to the brain and primarily the original site of the tumor he would most likely need growth hormones for the rest of his life because the pituitary glad would be damaged due to the radiation.
Cataracts are another side effect to worry about although Dr. Douglas said children's lens transplants are done pretty routinely and are quite easy, as to make us feel better about childhood cataracts. Last but not least and I am sure there are many more side effects I am missing but secondary malignancies are always a possibility and that is about 2%-4%.
Dr. Douglas, like ourselves, is banking on Sloan Kettering to help buy some time. He kind of agreed with us on our plan of action so far and thinks radiation should be our last route. The regimen he would need is 6 weeks of chemo 5 days a week. Not a really easy small regimen.
We feel more comfortable knowing these facts now and what will happen if and when this road is chosen. Like mentioned in the last paragraph we are trying everything else first but if and when it comes to this I think we both feel more comfortable knowing he won't loose ground with skills, they will just be tougher to maintain.
The best thing we can do for ourselves at this point in time is to educate ourselves as much as possible before making any major decision and we are praying for guidance and peace in whatever decisions we choose.