Hello everyone! It has been way too long since our last update! I’m going to try to give you a cliff notes version to help you get caught up with all that’s been happening for Josh since we last sat down to write an update in August.
—New chemo regimen: Josh is doing a daily chemo treatment with two medications that were part of a recent trial at U of M. He had his last Avastin treatment on August 24th and began this new regimen on August 28th. This medication plan is designed to target the genetic abnormality they found in the original tumor. The pairing of Dasatinib and Everolimus is hoped to help put off reoccurance of the cancer for as long as possible, while maintaining a good quality of life. The medications do come with side effects that Josh has had to deal with, and Everolimus requires special blood tests to make sure the level of medication in his body stays at the correct level. It has not been easy, but overall things have been going pretty well.
—MRI updates: Last MRI was done on September 30th, so about a month after he started his new treatment and the report back was that everything was “stable” and the Spine remains clear — Next MRI’s will be on December 17th.
–Botox — Josh continues to have checkups at Mary Free Bed with regular Botox shots to help the muscles in his right arm, leg, hand and ankle stay as flexible as possible.
—Therapy: — Josh has continued to work on PT, OT and Speech Therapy through McLaren. In late October they announced he has met all of his PT goals at this time, so he has “graduated” from that for the time being. If any issues arise he will be reassessed. He still has goals to work towards for OT & Speech and has made good progress toward them, he is taking a break for a few weeks and will start up again in December.
–School — Josh is in the final weeks of his first trimester of school for this year. He is taking two online classes, Zoology and Math. The work is definitely challenging for him and he is missing being in person, but he is doing great! He has been working hard to keep up with all of his work, which isn’t easy when you don’t always feel well and you have appointments getting in the way. His teachers and the school in general have been incredibly supportive and working with us to make sure Josh’s has the tools he needs and that his school experience is the best it can be.
We thank your for your continued thoughts and prayers for Josh and for our family. We will update you all again soon!