Honora Gabriel, Senior Vice President and Principal at Archbow Consulting, shared on LinkedIn:
“When my brother, Garret, was diagnosed with glioblastoma or stage IV brain cancer, we were told ten months.
This morning, 35 months later, his oncologist called him a miracle.
I’ve been thinking about those two numbers all morning. Ten months was the number we were given when none of us knew anything about GBM. We didn’t know what questions to ask, what treatments he would face, what decisions he would have to make or how many times my family would have to learn a new version of being his care partners.
We certainly didn’t know there would be a morning, 35 months later, when his oncologist would use the word ‘miracle’.
There is a lot that happened between ten months and 35 months. Two brain surgeries. A device surgically implanted in his skull. Rounds of chemotherapy. Two clinical trials. Numerous treatment changes. Seizures. Scans that gave us hope and scans that took our breath away. There were times we were told there were no options. Last year, we were told to contact hospice.
Along the way, my family learned how to be care partners. We learned when to research, when to ask another question, when to push, when to prepare for something we didn’t want to prepare for and when to stop and recognize that something good was happening.
That last one matters more than I realized. Serious illness teaches you to brace yourself for what comes next. The next scan. The next treatment. The next symptom. The next piece of bad news. Even when the news is good, part of you is already thinking about what could happen next. Sometimes you need someone to remind you to stay in the good moment.
I think about my work in patient support. We cannot wait for patients and families to ask all the right questions because they don’t know the questions yet. We didn’t. They haven’t done this before. Maybe we also shouldn’t wait for them to ask us when they need permission to celebrate.
We spend so much time designing support around what can go wrong: access barriers, treatment challenges, side effects, transitions or delays. All of that matters. A really good patient support program should recognize what is going right, too.
There are moments to educate, moments to anticipate, moments to solve a barrier and moments to step in and help. There are also moments when perhaps the most human thing we can do is simply recognize a milestone alongside someone. A stable scan matters. Getting back to something you love matters. Making it to a date on the calendar you weren’t sure you would see matters.
Supporting a patient isn’t only about getting them through treatment. It’s about helping them live while they’re going through it.
This morning, we didn’t need another plan or another question answered. We needed someone who has walked his journey with us to stop and say, look how far you’ve come.
Ten months became 35.
My brother is a warrior. I am incredibly proud of him, and so grateful that I get to walk his life journey alongside him.
Today, we celebrate.”
You can also read:
Archie Goodburn: Defying Oligodendroglioma While Racing for the Future of Brain Cancer Care
