Stem Cell Journey - March Update
We have a few updates that we wanted to share! But first, I want to start with another moment of gratitude. I really do not know how to adequately express how thankful we are for the well-wishes, prayers, and incredible generosity that we have received since my sister Laura created the GoFundMe. I know I’ve said it before, but we are blown away. It’s been challenging being on the receiving end of such kindness. I’m still learning how to accept the help and you all are forcing me to get better at it every day. The stack of thank you notes I'm working on is about 170 deep. I’m slowly chipping away! Each one genuinely gives me joy to write. So thank you, thank you, thank you.
March is MS Awareness Month, and it seems like this time every year my Instagram feed fills up with many MS posts from the friends that I've made in the MS community since 2019. The ol’ algorithm kicks in and I get a little glimpse into the lives of each person and how they’re managing their disease. MS is often referred to as the “snowflake disease”. This is because, like snowflakes, no two diagnoses are identical. Symptoms, severity, and progression vary drastically between individuals, making it highly unpredictable. The one thing that is predictable though? “They’re” still working on a cure. Whoever “they” is anyways. All these MS fighters are doing their best to find affordable and effective ways to manage their MS.
One of the pieces to this stem cell transplant journey that gives our family the most joy, is that maybe my transplant will open up the door for others here in Rochester. We’re starting to see more of this picture take shape as we start checking off the list of preliminary appointments required prior to jumping into the main procedure.
Amy and I recently traveled to the Cleveland Clinic in Ohio. My doctor thought it’d be a worthwhile trip for us to go meet with the head doctor performing stem cell transplants in Cleveland for other MS patients, primarily through what we understand to be clinical trials. He’s considered a world-renowned pioneer in his field and has had a lot of success treating MS patients through various cell-based therapies. After much discussion, he was optimistic that this is a good option for me. But also like our Doctor, he seemingly wanted to temper our expectations. I think this is their way of helping us gently come to the conclusion that the results we are hoping for are not necessarily guaranteed. Although the success rate is high, it’s not 100%. We assured him that our only regret would be never trying something that could be life-changing. We had a great trip, we learned a lot, and were able to ask some more questions about what to expect.
In efforts to keep this update from turning into a novel, here is a short list of notes and updates.
Stem Cell Transplant is still looking like a rough May 1st start.
I had a pulmonary exam (required before beginning) - I passed!
I had an EKG to test the strength and health of my heart - I passed!
I have to pass a dental clearance which is scheduled for tomorrow (I fear the dentist more than any other doctor on earth).
Full recovery is about 100 days.
We’re fighting with insurance to see if they’d cover even a fraction of costs. We’re hopeful to go from $160K(ish) out of pocket to $130K(ish) out of pocket. The numbers are ever evolving.
Between the chemotherapy, gathering of my stem cells, and the infusion of them back into my body, It’s looking like I'll spend 3-weeks straight in the hospital. We’re still unsure of what visitation will look like for friends and family due to infection risks and spread of germs, but we’ll keep you updated.
My Doctor has asked if I'd be willing to participate in some of his latest research, using hyperbolic chambers to boost recovery of my body. He’s super excited about this new initiative of his and I'm excited to volunteer!
When we returned to Rochester, we regrouped with our doctor here at Strong. He and his staff are an answer to prayer. We feel seen and heard. We can tell he is also excited about this. As we talked through more of the timing of this all, we asked him if the doctors in all the other departments are cooperating with him and his plan. As we said before, this is new for an MS patient here in Rochester, new for him, and new to the neurology department. After my question, he smiled. I asked him what the smile was about, thinking he’d begin sharing maybe a little bit more about the battle he’s fighting behind the scenes on my behalf. He said “everyone is excited, even some of the people here that may have not been before.” Why the change of heart? I asked him.
He said that there is a real united belief that amongst the team that my procedure will indeed open up the door for other MS fighters in Rochester. He said there are already a handful of MS patients watching and waiting in anticipation of my successful transplant. I said “I’m happy to be the guinea pig!” He looked at me and said “you’re not a guinea pig, you’re a trailblazer.”
For the record, I don’t feel like a trailblazer. I’m just grateful for the opportunity, the resources, and the people in my corner making this possible at all.
Finally, people have been asking me if I’m afraid or fearful. I’m not afraid of any of the medical stuff (except the dentist), but as I get closer to May 1st, I am more and more anxious about being isolated and unable to take care of my family for a few weeks. In the long scheme of things, I know it’ll go by quickly.
Thanks again. Love you all.