latest updates and some practical help opportunities

It’s been almost two weeks since we last updated, as we’ve been waiting on our neuro-oncologist referral, various insurance hurdles, and continued recovery progress. Thanks for all of your continued support, prayers & love…it is felt & appreciated. Here’s the latest:

Surgery Recovery Update

Overall, surgery recovery is going well. I’m discovering that it’s not particularly linear…there are good days and harder days, but the trend is positive. Right now I can generally get around and do a lot of things, but my left side still is re-learning how to function and everything, from thinking to moving, takes extra energy and focus, so I tire out quickly. Our medical team expects recovery to continue in various stages over the next couple months. We’re still waiting on my various outpatient therapy appointments to clear insurance and get scheduled, but that should all happen soon. 

Treatment Update

Through some positive unexpected scheduling alignment, we were able to get in to see our primary Doctor moving forward, a neuro-oncologist (a specialist in brain tumors) based out of Cleveland Clinic Main Campus. We spent over an hour and a half with him on Monday and he was excellent…thoughtful, thorough, and caring. His recommendation is observation, starting with an MRI in a few months and then regular MRIs to follow. There is also a promising new drug that is in the final stage of FDA approval that may be an option down the road. He additionally shared the updated imaging of the before and after tumor removal and I do indeed have a giant hole in my head now 🙂. The general prognosis is very positive, with a likelihood that it will be years before we’ll see growth and that new treatment options have very positive outcomes. Our focus now is on surgery recovery and figuring out how to re-enter “normal” life over the coming months.

Joy and I both felt a strong array of emotions on returning home…it’s just been such a weird and wild ride and it all still feels like quite a bit of whiplash, even with lots of good news. We are surely deeply grateful in many ways, including for such positive outcomes from surgery and prognosis, for repeatedly getting such thoughtful and skilled medical professionals to guide us, and for family and community that have been so supportive every step of the way.

Practical Help/Support Update

Many folks have generously offered/asked how they can help and done so much over the last month and a half. Thank you! We do have some things we’ll need help with coming up as we continue through surgery recovery:

 -Yard Help: On Saturday, May 18th, we’re hoping to get some yard projects and mulching done and would welcome anyone who wants to come help between 9 - 3. You can email me at [email protected] if you’re able to help for any part of the time and I’ll get you details.

 -Rides: I won’t be able to drive for another 5 months or so. As soon as we hear back on my therapy appointments, I’ll be creating a calendar of my appointments that anyone interested can sign up to provide a ride. If you’d like to know when this gets launched/updated, just send me an email at [email protected] and I’ll let you know when it’s up & running.

 -TomTod: The team at TomTod has been incredible…both the board and staff have stepped up in so many ways. This has allowed me to focus on recovery and family and I’m deeply grateful. There are two specific ways to support our work with and for middle schoolers right now:

• This Thursday (May 9th) is our big annual fundraiser, the Feast of Ideas. We’re trying to get to 200+ donors and raise over $78,000 to empower middle schoolers in the coming year…gifts of any size can be given at anytime at https://givebutter.com/feast2024
• Free week-long summer camps: This summer, we’ll be hosting nearly 500 campers throughout Stark and Summit counties! If you know a middle schooler in Canton, Akron or North Canton, registration is available now at https://www.tomtodideas.org/camp-what-if/. It’d also be super helpful if you could share this link with friends, family and on social media to help get the word out!

Again, thanks so much for the love, prayers, support, cards, texts, messages, encouragement…we feel so surrounded by a wonderful community. Thank you!