On December 20th our son had an MRI performed which revealed a mass in his brain. He was immediately admitted to Duke University Hospital. The next morning we were summoned to the hallway outside his room to meet his medical team consisting of more than 14 dedicated professionals. It is an initiation that too many parents have gone through to a club no one should ever have to join. To conclude this rite a green St. Baldrick's bag was passed to us.
This green bag included a number of informational resources for parents including the "big scary book" Family Handbook by the Children's Oncology Group and the "even bigger scary book" Childhood Brain & Spinal Cord Tumors. After all the tests, Christmas in the hospital (thank you to all the wonderful volunteers who came in) and surgery on the 27th, we were finally home and I finally worked up the courage to open the green St. Baldrick's bag. These books, although scary, have been a godsend, especially for a planner and troubleshooter like me who likes to flowchart the future with a bunch of if-then statements. I was even able to find, through these books, a link to a support group for parents of children with my son's type of rare tumor.
The good news is that my son's type of tumor, while rare, responds very well to treatment with greater than 90% of patients remaining relapse-free five years after treatment ends. His plan includes chemotherapy followed by radiation therapy. He will be away from his classmates all semester in what had been his most successful school year yet, both academically and socially. He will get very sick before he gets better. There will be more hospital stays. This has been and will be a very difficult time for us, especially for Alex. There will be long-term effects from his treatment, but if all goes well, they should be minimal. He will have lifelong effects from the tumors, but unless you look in his medicine cabinet you'd probably not ever know it. He is receiving the best care from the best doctors at two of the best hospitals for childhood brain and spinal cord tumors. This really, really sucks but it could be much worse.
Our fight is really a fight to get our son back to normal as much as we possibly can. For many other parents their fight is for the very survival of their child. Our time spent at Duke has made that readily and sadly apparent to us.
So on March 13th at PNC Arena prior to the Carolina Hurricanes game versus Boston I will be participating in the St. Baldrick's event and shaving my head to show my support for my son, Alex. In doing so, I hope to raise as much money as possible for St. Baldrick's to help them continue to make the green bags available to parents of children with cancer and to fund research so that more and more of these parents may be able to fight to get their children back to normal instead of fighting for their child's very survival.
