Well, I started a blog for Bram a while ago, but it was part of a website that I ended up not keeping. I thought I'd give it another go, but stick with a straight blog this time. I'll do my best to keep the blog updated. I've been giving updates through Facebook, but I've grown tired of Facebook and its voyeuristic nature. I just want a simple way to provide updates on Bram for those people who'd like to stay in the loop. So here you go.
Bram is now five-years-old and in kindergarten. He finished his chemotherapy about two and a half years ago so we're about half way to the magical five year mark. If Bram stays clear for another two and a half years, they'll knock his MRI's down to once a year. However, if he stays clear for just another year and a half (give or take a month), they'll declare him "in remission." For any new followers, Bram was diagnosed with Atypical Teratoid Rhabdoid Tumor when he was just 22 months old. AT/RT is a rare (only 30 a year are diagnosed) and very malignant (tends to recur and spread rapidly) brain tumor. Upon his diagnosis, Bram underwent brain surgery to remove the tumor (known as a tumor resection), six weeks of radiation to his brain, and about fourteen months of multi-modal chemotherapy. I'd have to count them up, but I believe he received around eight different chemotherapy drugs, some of them were delivered directly into his spine (intrathecal chemotherapy).
Bram spent about 75% of those fourteen months in the hospital due to infection. Through the support of my friends, family, and strangers, I was able to be with him in the hospital through it all. It was a long and arduous journey. On two separate occasions, Bram was admitted for sepsis. Both times I thought I might lose him. He also had to endure multiple surgeries to replace his chemotherapy port due to staph infections in the line. He is the strongest and bravest little boy I know. He has endured more than most adults.
Bram is also an amazing story of recovery. Although we do not know what the future holds for him, today Bram is a normal kindergartener. Both radiation and chemotherapy can have devastating consequences to a child's cognitive abilities. As of right now, Bram tests in the average range for intelligence. The major cognitive casualty seems to be processing speed; however, according to his teacher, Bram is doing better than a number of his classmates. He is in a regular kindergarten class and gets pulled out once a day for about twenty minutes to work with a special ed. teacher. The time he spends with that teacher was decreased at the end of last year from forty-five minutes. I don't expect Bram to be pulled out at all next year. Bram's real challenge has been recovering his fine motor skills and speech. His speech is constantly improving. 95% of what he says is clear and understandable. His writing is a bit of a challenge for him. Muscle weakness and fine motor coordination are to blame for his difficulties.
I can't emphasize enough how fortunate Bram has been in terms of side effects; however, I also have to acknowledge the reality that we are not out of the woods. Both the chemotherapy drugs and the radiation he received have the ability to cause side effects down the road. Cognitive abilities can degenerate long after the radiation was received. Radiation can also cause new cancer, stroke, and aneurysms. Some of the chemo drugs can cause leukemia and others he received can damage organs. Congestive heart failure is a major concern due to the doxorubicin he received.
Still, we have today and that is amazing. While the fear of relapse always looms, I am striving to focus on the enjoyment of each day. Right now, we are preparing for Halloween and looking forward to Thanksgiving and Christmas. Bram's next MRI is scheduled for January. I'll post again periodically and will definitely update you with Bram's MRI results when we get them. Thank you for following Bram's story as we "keep moving forward."
