Ben started an “experimental” treatment last week that we had hoped would help shrink the multiple lesions in his body. Unfortunately he broke out into a massive and very painful rash over the weekend and ended up in the ER last night due to a fever of 104.5.
Due to Ben being 14 he actually has input into his treatment. He has decided to stop the experimental drug and move forward with traditional treatments. He’ll finish out this round of chemo then we’ll figure out what is next in a couple of weeks.
As his dad I’m proud of him for making decisions but I’m also scared because at some point he may just say enough is enough and we’ll have to respect his wishes.
Fortunately we’re not out of options for treatment but the next year or so will be tough on Ben, mentally and physically, as we wrestle with quality of life vs. continued treatment.
Thanks for your love, support and prayers.