Friday, October 2, 2015

Test Results

Trip had an appointment with his oncologist a couple of weeks ago. The scaly patches on his scalp have spread, so his doctor is concerned. He sent him for a skeletal survey to be sure the disease hadn’t flared up and spread to his bones again. Thankfully we got news today that all of his bones are free of lesions, so at this point we know his scalp is the only area affected. We will be treating it with a steroid shampoo for now and hopefully won’t see any spreading to other areas. Trip is thrilled the doctor thinks chemo is unnecessary at this point for only skin involvement.

I feel like we are teetering on the edge of good and bad news. I’m thankful that his bones are healthy, but I’m worried what will happen if it continues to spread. Trip’s doctor takes comfort in the fact that statistically a “burn out” phase can happen at the age of 8, meaning Trip’s disease could have run its course by then and never be an issue for him again. I know from support groups and other moms that there are many who deal with the disease long after the age of 8, but this is my greatest hope for my son. We are on a good track after being off treatment for over a year, so I must veer off the “what if” road in order to preserve my sanity.

Exciting new research is being done with the BRAF gene that will hopefully lead to recognizing an LCH flare before serious damage is done to the body. It could also help identify better treatments for this unpredictable disease. That is something to be excited about! I have hope.