Stanford's Final Goodbye

Sweet friends. In a recent conversation with one of you, I realized that my last two blog post were all emotional and not very informational lol I never gave an update from Hyrum's big mid-december MRI! This might have something to do with the fact that after all its hype, it didn't feel very monumental. It was basically a "Well, it hasn't decreased in size. These two new areas are noticeable but right now we can't tell if its inflammation (just part of treatment) or tumor growth." Because his walking, talking, eating, and overall symptoms still looked good, we planned to continue treatments. 

About a week after that MRI, Hyrum's walking became more unsteady. His energy was a little less. Drinking water is harder than before.  His hearing seemed less also, (though an audiology exam confirmed that these recent hearing issues are just fatigue and not neurological.) Michael and I discussed plans for the January 9 infusion, and surprisingly, I felt very good about Michael and Hyrum going alone for the first 10 testing/inpatient days. We would follow them to CA after Hyrum checked out of the hospital. 

They left on Thursday morning. Friday was all the tests and scans. For some reason I thought it was a good idea to go to an off-the-grid family cabin that same day? lol I have literally NEVER had cell service there, but by an actual miracle of God, I had two bars all Friday at the family cabin and spent several hours on the phone receiving/giving updates to family and doctors.

The first post-MRI text from Michael was "Tumor growth in all the places." I sat and cried and let that sink in. He sent me a video of his debrief with Hyrum's doctor, and he was absolutely right. The two suspicious areas from December are confirmed tumor growth, and there are two others as well. In medical speak, "MRI showed a radiographic increase in the size of his pontine and medullary tumor with more prominent bilateral cerebellar involvement R>L as well as increased right internal capsule involvement."

The cerebellum is the big deal here. It's a disqualifying factor for the trial, because CAR-T just hasn't been shown to be effective once the tumor has breached there. His doctors did NOT disqualify him, however. They were willing to treat him with Monday's infusion and felt "confident we can keep him safe" if that was what we wanted to do. It was a tender offering, meant more to treat our grief than his cancer. The need to treat, to heal, to hope... it's real. They offered us the option, stepping past their trial's bounds, knowing fully that they'll publish each decision when we're done. Each treatment that shows no results is data in their name, but they chose to care for us more than numerical success. It meant a lot to me. 

Michael and I discussed with each other and with Hyrum. At this point, the risks far outweigh the benefits of another infusion, so we decided to forgo further CAR-T treatment and fly them back to Utah. I called our doctor, cried with her, and thanked her for her work. We didn't get to choose this, but she did. She chose this life. She fights to keep the patients that she knows she'll have to lose. She said, "I wish we'd helped him more." And I, through tears, assured her that we'd never needed that. We knew, before we started this, that it was not for us. We did it for the parents that she'll help ten years from now. 

So here we are... together, in this time we knew would come. The time without a treatment plan, beyond our healthcare's reach. Oh sure, there's drugs that he can take. They'll ease him and our minds. But now is for the letting go of hospitals and cures. It's time to simply be, to play, to hold each other's hands. For months, perhaps, or less than that. We hold him while we can.