Triathlon season is well over half way through by now for most of us in the States. I just finished a "recovery week" if you will, I was actually getting over a little bump and scratch I had when I dismounted over my handle bars a week ago and I got out of racing the Clearlake triathlon this past weekend. We all know triathletes and other athletes go through hours and hours of intense discomfort to perform at a higher level come time for race day and in an effort help a fellow co-worker Jami Rabon and Occupational Therapist for East Texas Medical Center in Cedar Creek Lake. Jami's grandson Scott James Brown (8/22/08) was born with cancer known as neuroblastoma, it is an extremely rare case as he didn't respond to the chemo treatment. In short, Scotty's neuroblastoma has metastasized into his bones, marrow, and lymphatic system. You can get more back ground on Baby Scotty by reading the following blog his dad Mike wrote.
Welcome to Baby Scotty. I will start from the beginning to bring you all up to speed. During Julia's pregnancy Scotty was found to have a condition called hydronephrosis. That is a dilation of one kidney, and it was found during a routine ultra sound. Because of this condition there were repeated ultrasounds both in the womb and a few days after birth. During the follow up UT's a mass was noticed above Scotty's right kidney, and it was at first thought to be a hemorrhage caused by the trauma of birth. After the radiologist at children's hospital suggested waiting another three months and looking at it again, our pediatrician suggested we do further testing immediately to rule out the possibility of cancer. A couple additional tests resulted in the official diagnosis. Scotty had a malignant tumor where his right adrenal gland was supposed to be. The cancer is called nueroblastoma.
We met with an oncologist, where we learned that nueroblastoma often goes away all by itself, and that we should expect it to start shrinking and/or calcifying shortly. In fact we were told that many children that are born with the disease are never even diagnosed because they exhibit no symptoms, and the disease goes away on it's own. We also heard several times that if not for the hydronephrosis, a completely unrelated condition, we never would have know he was born with cancer because many cases go away on their own. After consulting experts all over the country, we decided to hold off on any treatment and give it a chance to "go away on it's own." Instead of shrinking, the tumor grew rapidly to roughly the size of a baseball. At six weeks of age Scotty underwent surgery to have it removed.
The removal was thought to be complete success, and the tumor was sent off to be analyzed. Dr. Shimada, the man who wrote the book on nueroblastoma tumor classification, did the pathology himself. The genetic makeup of the tumor was as good as we could have expected. Scotty's cancer was thought to have been completely removed with there being very little chance of recurrence. A follow up catecholamine (adrenal metabolites affected by NB) test showed Scotty's levels to be normal, and we were beginning to think we had caught it early enough and beaten it. Six weeks later during a routine ultra sound, we found many legions in Scotty's liver.
The official word was "there are too many to count" which sounds really bad, but is actually the way stage 4s NB typically presents. This is important because the "s" after the stage 4 classification means "special considerations", and that kept him away from chemotherapy. Chemo is very hard on infants, so we were hoping to keep him from it as long as possible. The 4s classification is not treated because it is common for it to go away all by itself. We were again told to expect the cancer to regress on it's own. We waited, scanning Scotty every few weeks or more. He underwent ultrasound, MRI, MIBG, bone scan, and chemical testing. Most of these test have been cronicled on a facebook cause we used to update people. I am unable to copy all of the announcements from the facebook cause over here, so you have to join the facebook cause to read them if you wish. The short version is this: Scotty's nueroblastoma has metastasized into his bones, marrow, and lymphatic system. He has been reclassified as a stage 4.
So we are starting a Caring bridge website to chronicle Scotty's fight. To this point we have been updating more than seven hundred people via Facebook cause named "baby scotty." This site will parallel the cause on facebook for all those who wish to receive the latest news on our tough little guy. Given the immense power of search engines and the internet, you will find very little information on the disease itself. The information here is pertinent to Scotty's specific conditions, his treatment, and our family. The journal starts at our finding that Scotty had been reclassified as stage four.
To help out Baby Scotty, the most important thing you can do is PRAY and if you have the finances than you send your donations to this website http://www.caringbridge.org/visit/babyscotty also you can read other journal entries on his progress the lastest news is the little trooper just started walking and has turned 1 year old.
With only 4 triathlons left to compete in I'll send out "gentle" reminders about baby Scotty on his progress and that you should help donate and PRAY!!!