Health update - James remains cancer-free of MDS/AML MLL subtype. Having been in complete remission for over 5 years makes it very unlikely to return. We have only heard of 2 kids that relapsed after this time-frame. He is finally starting to develop a strong immune system and has missed very little school this year due to illness. He has grown over an inch since October but has maintained his weight which his doctor highly encouraged since being heavy stresses his heart. With the return of warmer days, James will be able to get outside for more exercise and that too should help him be a strong, happy boy! The return of warm weather also brings more organic, fresh fruit and veggies to his diet. We got the test results from his neuro/cognitive evaluation and they were very discouraging. We have not shared the news because we have yet to decide how to proceed. The good news is that James tested to be well above average in intelligence. The bad news is that he has very poor working memory capacity and executive decision making skills. He has a lack of ability to focus for more than a few minutes at a time and is easily distracted. He is unable to remain "on task" and has difficulty finishing his work in a timely manner. He also has nerve damage that causes him to have great difficulty with writing. It stated that his inabilities would become more pronounced academically, when he needed to read to learn and take written tests that are timed. The worst news from the report stated that James would struggle in comparison with his peers, despite his intelligence. No parent wants their child to ever struggle. In short, the report totally bummed us out!
These problems are common with children who have received intense chemotherapy. They result from the treatment that saved his life. St. Jude has developed a plan of action for James' school to implement accommodations to help James be graded on a even playing field so that his grades reflect his unique abilities. However, we as parents of an intelligent boy who sometimes would rather be lazy than work hard (admit it, we are all likely to be that way from time to time) these sorts of accommodations could be used by James to not perform to his highest level. We have asked his teacher, who is a wonderful lady that knows James and wants the best for him, to evaluate the St. Jude list and narrow it to a list of things that would likely help James learn better without indulging him or encouraging him to lag behind when he could in fact do better. We realize that his grades will not reflect his intelligence but know his school will be a learning environment that will give James a better ability to have a future of success in life. We plan to have these accommodations in place for James during his next school year, with the ability to modify them as needed. Once more I would like to express our joy at having James remain cancer-free! We are grateful that there was a cure for him at St. Jude. He brings love, laughter, and delight to our world. He is the best boy God could have ever given us!
In light of the fact that only 45% of kids who share James’ diagnosis have a cure and that 80% of them leave therapy with side effects of treatment that are sometimes fatal we are once again fundraising for St. Baldrick’s Foundation. There are better treatments, more cures, less toxic drugs that give better outcomes, and a lot more hope available if there is funding. St. Baldrick’s Foundation helps kids conquer cancer!
Only 3 weeks till the BIG EVENT! James is asking you to support his goal of providing one child with a clinical trial that would give them more hope for a cure. He is 60% of the way there; help him out if you haven't already. He is going to shave off his glorious, blonde, curly hair to help kids fight cancer! Here is his donation page link https://www.stbaldricks.org/participants/mypage/811201/2016