Hello everyone! Just wanted to send out a quick update to everyone with the latest on how Josh is doing and his treatment plan.
We are working at getting Josh back into a regular weekly therapy routine like we had prior to COVID-19. He had his third session this week and seems happy to be back at it.
In his Physical Therapy sessions, he has been working on a lot of stretching and balance exercises to help alleviate some hip issues that have been bothering him lately. He even laid on his stomach for the first time in over a year and a half! It was difficult to get into and out of that position at first, but now he’s becoming a real pro at it.
Occupational Therapy is focusing on strengthening the muscles in his right arm/hand and trying to work on getting some active movement. Some of the exercises he is doing involve using his left hand to put an object into his right and then trying to perform a task with his hand or thumb. Some activities include grabbing and dropping a ball, pushing buttons on his game controller, playing around with a fidget cube and his favorite, trying to eat a pretzel rod fully with his right arm/hand. The therapist will also be putting in prescriptions for two different hand braces to help keep Josh’s fingers straight. One of the braces will be more of a stretching brace the other will be more functional.
Speech was bittersweet as he had to say goodbye to one of his favorite therapists who is leaving for a job in a new area. She finished up his re-evaluation and ended by having him bring in his Switch to give her a tour of his island on Animal Crossing. We will miss you Courtney!
On the oncology front, Josh had another infusion of Avastin on the 15th. The process went well, no issues to report thankfully. It just takes a LONG process from start to finish. Josh has been bringing his Switch to help him pass the time, as well as watching TV or playing on his phone. His next infusion is scheduled for Monday, the 27th.
We also had a quick check in with Dr. Braunreiter at this visit and we discussed the next possible steps in Josh’s treatment. At the moment she is planning on having him continue with the Avastin infusions and is anticipating at least 2 to 3 more treatments. In the meantime she is beginning to work on getting approval from insurance for an oral chemo regimen that has been used in a recent U of M trial. This would be two different medications given daily for a period of time. There is no guarantee of effectiveness, but it appears to be well tolerated and since the trial focused on some of the indicators in the genetic make up of Josh’s original tumor this seems like a logical step to take. She expects the approval process for this to be “rough’ and anticipates having to do an appeal or two as this isn’t a standard course of treatment. In the meantime she is continuing to look for other potential chemo medications and trials if the insurance company gives a firm “No.” If this whole process takes longer than anticipated, Josh will most likely receive more treatments of Avastin to try to make sure there are no issues with growth or inflammation of the tumors. It is frustrating to know that his treatment plan is not entirely in the doctors hands, but at the mercy of people in an insurance office somewhere. So, please send some good thoughts and prayers that we will get approval to proceed with the oncologist’s plan.
Sounds good hope therapy all goes well , prayers that the insurance well give the ok. God Bless you and Love Ya Grand Boyne
Oh my, so much going on.
Thank you for sharing and so many prayers for Josh and all of you, God bless you, and hugs if that helps 🙏🤗