The story of October 10, 2017 is one of firsts. Matt’s first full day at Kessler. G’s and H’s first time seeing Matt since his fall. The first time I started to question whether the poliovirus was doing anything to help Matt.
The school bus picked up G and H, and I headed to Kessler to fill out Matt’s paperwork. When I arrived, I found him working with a physical therapist to get dressed. He had a morning and an afternoon full of evaluations. The evaluations would tell us exactly what kinds of therapies Matt needed and how often.
I stayed with Matt until the therapists helped him into a wheel chair and rolled him into the treatment rooms, where family was not permitted. I left and told Matt I’d be back later in the afternoon with G and H.
G and H were excited to see Matt. They hadn’t seen him in nearly two weeks and the time they’d had with him before that had been rocky. But I worried for the visual that might be imprinted onto their minds. I tried to prepare them for the changes in Matt. I told them about the wheelchair and the toned down, flat personality. I warned them about the scar across his eyebrow from his fall and the bump (and remaining stitches) from his shunt surgery. I hoped to ready them for the quiet halls and the bleak look on many of the other patients.
We arrived with dinner and stuffed animals. (A wise friend had suggested the stuffed animals, which was brilliant.) They asked Matt about the wheelchair and he explained that he was having trouble using his legs. G and H nodded and started playing catch with their stuffed animals. Matt and I sat together at the table and I filled the silence with nonsense about the day. I also updated him on Duke’s most recent email.
The Duke doctor wrote that the MRI showed a decrease in the pressure on the brain—the shunt was working—but the tumor treated with polio looked brighter. She said once we restart the Avastin, the tumor will decrease in brightness and size.
For the first time, Duke’s optimism failed to comfort me. Avastin had caused a hemorrhage. Avastin was not a cure. Avastin only made MRIs look better, but didn’t actually increase survival time. For the first time, I started to question whether polio was doing anything or was Avastin simply giving us a false sense of security. Had Hackensack been correct all those months ago?
On October 10, 2017, we (or I) decided to cancel a Disney cruise we’d booked for the first week of November with my cousins. I remember wanting desperately to believe that by November, everything would be back on track. I remember wanting to resist the cancellation because canceling was admitting something about Matt and his recovery that I didn’t want to admit. Again. It was the second trip we had to cancel due to Matt’s illness.
Today marks my 200th post in this project. Which means about two hundred days passed between the injection of the poliovirus and Matt’s first day in acute in-patient rehab recovering from a life saving shunt surgery. In those two hundred days, he suffered swelling and blips and hemorrhages, seizures, and falls. He’d had sudden upswings and moments when his dream was nearly within reach. In two hundred days, we fought a dozen battles against a relentless tumor and celebrated a dozen more small triumphs. We (Matt, G, H, and I) lived an infinite number of lasts, most of which passed without acknowledgement.
In the past two hundred Post Hope days, I’ve written more than 100,000 words in this story. Our story has been viewed more than 86,000 times by almost (and I’m being generous with that almost) 11,000 visitors. In two hundred days I’ve had good days and lonely days and days in which I can close my eyes and see the echo of our past selves just trying to make it through one more hour. I’ve held two children through tears and nightmares and cheered them as they’ve scaled rock walls. I’ve learned to do the paperwork and schedule the contractors, and I’ve forgotten to do the paperwork and schedule the contractors. We (G, H, and I) have lived an infinite number of firsts, which are always acknowledged.
One year and two hundred(ish) days ago, we started on a road we believed would lead to a miracle cure. One year ago today, I started to lose faith in that miracle cure (for Matt). Two hundred days ago, the weight of the battle we’d fought and lost in pursuit of the miracle cure made it hard to breathe.
Two hundred posts later, I want to say thank you to everyone following along, for helping me bear the weight of this story. It makes it easier for me to breathe. I only hope, as always, that our story is continuing to do a little good, maybe helping to lighten the weight of someone else’s story.
There are four months left in this story. Four months in which hope was harder to find, sometimes nearly impossible, but always present. Not the miracle we wanted, but a maybe still a miracle of sorts.