I have been trying to write this update for the last 3 weeks. Now so much time has passed it is hard to know where to start. I have put together several post, starting with where we are at with Kyle’s treatment, to add individually.
Kyle and the whole crew made the trip to Seattle for an MRI on May 14th. Kyle, again, did an amazing job of lying perfectly still for 25 minutes for the MRI. There is a telescope set up so he can look at me sitting across the room and I send him messages with our secret sign language. I am sure that the folks running the machine find it quite amusing as I make gestures to Kyle that only he understands.
After meeting with Dr. Olson we learned that Kyle’s brain bump is still growing, although slowly relative to most. Kyle’s dad and I decided, in conjunction with Dr. Olson, it was time to find a new way to try and keep the brain bump from getting any bigger. We headed back to Bellingham with heavy hearts and many things to research. But before we left, Dr. Olson, as usual, had a simple way of reminding us what is most important, he hugged each of us and said, "Go home and have fun with your boys."
While enjoying each day, Jocelyn and I worked with Dr. Olson to choose Kyle’s next course of treatment. We considered many options currently in clinical trial and some that aren't. The world of clinical trials is a maze of red tape and bureaucratic rules, which actually limit our choices. But after much deliberation and frustration we started Kyle on a “cocktail” of chemotherapy drugs. Each drug works on the tumor in a different way so our hope is using a combination will enable them to go after the tumor on three fronts at the same time inhibiting the tumor’s ability to work around the treatment. (For anyone interested in more specific information on his treatment, the trial number is ADVL0414.)
Kyle started his first course on Monday, June 2nd. His friend Campbell came with us to Children's for his first day of treatment, making the trip there and back a lot more fun. And I can't forget to share... Kyle is extremely proud he has learned to swallow pills! It sure makes things easier when we don’t have to find a way to mask the taste of one more thing that Kyle says tastes “disgusting!”
Kyle finished his first 5 days of chemo like a champ! He gets a couple weeks to rest before we start all over again...
A quick side note.... the Friday before starting the new chemo Kyle had another MRI. While we waited for the results he was able to see his friend, Mara Adams, who is 5 and has the same brain bump as Kyle. She was starting a new chemo protocol as well. Please keep Mara in your prayers with Kyle as each of them look for answers in something new.