Hope was the driving force in my life on this day, as I packed a bag and wrote out schedules for G and H for the week. Matt and I would be leaving for North Carolina, going to Duke to see the doctors who would cure him.
Yes, cure him.
Let me back up…
Matt was diagnosed in June 2016. At the time we reached out to Duke for help. They told us, for a multitude of reasons, to stick with the standard of care treatment locally. Six weeks of radiation followed by six months of chemotherapy, only to be told that the MRI showed something.
The tumor was back in a new section of his brain.
We scrambled. We panicked. It wasn’t supposed to come back this soon. EVERYBODY had said Matt’s tumor had all the favorable genetic markers. The doctor at Duke, who we’d met months earlier just to establish a relationship, said Matt would see his kids graduate high school.
After we got the MRI report, we applied for the polio virus trial at Duke. It had cured people and been featured on 60 Minutes. The first patient was cancer free after five years. At first, Duke told us Matt may not qualify. We explored other options. They sucked. There were trials that required weekly IV infusions that could make him sick, surgical options that were nothing more than bandaids. We wanted a cure. When Matt got the call that Duke accepted him into polio, we cheered.
Bent over our kitchen table, huddled over the phone on speaker, scribbling notes as fast as we could while the kids played in the playroom (snow day for them), we cheered the news that Matt would get a treatment that had cured patients, that there was an end in sight to his disease.
The Duke doctor cautioned us that polio was as effective as other immunotherapy; it was not guaranteed. I understood but was sure for Matt it was a cure. How could it not be? For his part, Matt was more practical, but he wanted to fight for a cure, not a few extra years, which is what the other treatments offered.
High risk, high reward.
So, we signed the paperwork. Did the initial lab work. And on March 26, 2017, we packed for a week long trip to North Carolina to chase “the cure.”
Yesterday, on our way to her friend’s birthday party, G told me it wasn’t fair that her friend gets to have her daddy at her birthday party and she didn’t. What can I say except I know, but he’s there in spirit…and that we tried.