It's been a while since I've posted and it's almost as if people sensed changes were on the rise. I've been receiving more texts checking in on us, asking how things are going. So here is my attempt at an update. I wish I could report that things were happily progressing and life was still very boring. However, that is not the case.
Matt is considered stable by medical terms but in our own terms, his disease is slowly progressing. While this new treatment never worked incredibly well, as we never saw a huge decrease in his numbers, it's done a decent job at keeping things under control and still continues to do so. He began the clinical trial with an m spike of 1.2 in late January or early February. About five months ago, it had decreased to 0.6 but never made it lower than that. His doctor was slightly perplexed because this regimen has shown great success in a majority of the patients. Since then his numbers have bounced back and forth and are sitting around 1.0. Again, the medical community considers this stable but we've watched those numbers slowly increase. If he gets to 1.2 they will kick him off the trial, which is what we are planning for right now.
Matt has spoken to his current oncologist about next steps and he highly recommended a process called Car-t. This is a similar process to a stem cell transplant, requiring a 7 day hospital stay and approximately 4-6 weeks of daily check ins. Our initial thought was that this recommendations felt extreme and previously has only been used as a last resort. It just didn't (and doesn't) feel like we are there yet. But last week Matt and his dad went to see another myeloma specialist at Mayo and he also recommended car-t. He helped explain the thought process behind this recommendation and that being the sooner in lines of treatment a person receives car-t, the more effective it is. Like I mentioned earlier, this has typically only been used as a last resort and for people who have undergone 7 or 8 lines of treatment. Matt has only undergone 2. But his rationale made sense and helped us change our way of thinking. I won't lie and say there weren't tears and a large sense of anxiety, but we are settling into the idea of moving forward with car-t.
Now the tricky part begins. Car-t is only available through clinical trials and the spots are limited. Matt got on the wait list at Mayo and plans to do the same at Medical College of Wisconsin and University of Chicago. Of course, we are hoping that he will be able to receive his car-t here in Chicago, we are prepared for it to be away from home. That would mean he would need to be in-patient at the facility for 7 days and then within a short drive for the remaining 4-6 weeks. So you can imagine why we are hoping it's all done here in Chicago. But even Milwaukee feels manageable.
For me, the real dread comes in explaining it to the kids. We haven't had to do that yet and it feels like a burden that is getting heavier by the day. While I am certain we can explain it in a way that feels manageable and not scary, we still worry they will carry that worry with them each day. We haven't decided when and how we will tell them, but I lay awake at night rehearsing it in my head. We've decided that not naming it is important. There is a lot of stigma that comes with the "c" word and in order to better protect them from unnecessary fears, we will instead describe it in a way they can understand. Our hope that they can see the normal, healthy, active dad that they do now and take comfort in knowing it is minimally impactful in their day-to-day lives. We realize this may change if Matt undergoes car-t.
So there you have it, a not-so-great update. My emotions seem to be on a rollercoaster and some days I feel okay and confident in the steps ahead, and other days I go down a hole of worry. Part of what keeps me hopeful is Matt's positive attitude. He never lets us see his worry (even though I know it's there) and he feels great physically He runs almost daily, plays with the kids constantly, and is living a happy, normal life. From the outside, you'd never know there was anything wrong. And we are hopeful that will continue for a long, long time. I keep telling myself, we've made it 5 years with relative ease, we can keep doing that for another 5 and another 5 and so on.
All our love,
Matt & Mandy
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