One year ago today, Matt had a MRI scheduled at Columbia. I’d been watching the weather forecast for January 4, 2018 with growing concern since the beginning of the week. One to two inches had turned into three to four inches, which had turned into five to eight.
The idea of driving Matt into the city during a snow storm with G and H in tow—because no doubt school would be cancelled—made my blood pressure rise. This was the nightmare I’d feared all those weeks ago when the radiation oncologist had prescribed fifteen days of whole brain radiation to be completed in December. We’d managed to escape any major weather situations in December, but it was looking increasingly likely that weren’t going to be so lucky this time.
My concern turned out to be valid. That morning, we woke up to brutally low temperatures, high winds, and thick snowflakes. School was delayed and then promptly officially cancelled. If I’d been on my own, I would have faced a nightmare scenario.
But, I wasn’t alone. I had help. Not luckily medically, but so lucky to be surrounded by the friends and family who surrounded us.
Matt’s parents also had an appointment in the city on January 4, 2018, and their concern regarding difficult travel into the city mirrored mine. Which is why, the night before, they booked a hotel room, picked up Matt, and drove into the city. They awoke in the city to hazardous weather conditions, and while getting around the city was troublesome (more than troublesome), they managed to make it to their appointment, Matt’s MRI, and Matt’s follow-up with the doctor to hear the results of the MRI.
Meanwhile, G, H, and I watched movies, baked, and played board games. I remember the way I paced the house, trying to keep the nervous energy at bay as I waited for Matt’s parents to call so I could listen to the MRI results on speaker. I remember the way I pressed refresh on Matt’s patient portal page on the Columbia website until I saw the updated information: his temperature, blood pressure, weight, and respiration rate.
Finally, the phone rang. I turned on a movie for G and H and resumed pacing. The doctor reviewed the MRI and the news was devastating. Everything was bigger. Everything had failed to respond to the radiation, so far. The doctor provided three options: wait and give the whole brain radiation more time to work, Avastin, or surgery to remove the tumor in the left parietal lobe—the one treated with poliovirus. Three options, all of which carried the potential to bring Matt back, not one of which made it easier to breathe.
In a text message to a friend, I told her that even the doctor wasn’t sure what to do. Surgery might relieve some of Matt’s worst symptoms, but because the tumor was so large, Matt could come out of surgery with bigger problems than he already had. Avastin might relieve his symptoms like it had once before, but the MRI showed blood in the tumor and the risk of hemorrhage was too great—Matt had already suffered a brain bleed possibly due to Avastin. And, waiting was simply tempting fate–everything kept growing.
I ended the call after the doctor said she’d present Matt’s case to the tumor board to determine whether he was even a candidate for surgery. Without knowing this, we were talking only in hypotheticals, anyway. But the tumor board had convened for the week and wouldn’t convene again until January 11th. We had to wait. And the doctor assured us that one week wouldn’t make a difference—the one week delay shouldn’t matter.
That afternoon, the moment Matt arrived home, G and H decided they wanted to play outside in the snow. I couldn’t say no—I’d promised H that I would be the one to play outside with him if Daddy couldn’t. I settled Matt onto the couch, hoping to talk about the most recent MRI later—he was exhausted after a long day, anyway—and took G and H outside to play in the bitter cold.
What I remember most from this day is the smile on G’s and H’s faces as they sled down the small hill in our backyard and then came inside to re-live the experience over hot chocolate. Because it was a reminder that even though it felt as if the walls were closing in, we could still have moments of happiness, moments of joy and life and hope.