Legacy is a concept Ken and I talked about often after he was diagnosed. First and foremost, our children embody part of Ken’s legacy. I see that in so many aspects, especially their curiosity about the world, creative talents and the fact that they read so avidly and well. They both attended the “Ken Moore School of Reading” in the preschool years, where he devised a method to teach them reading and sounds in a phonetic way. I remember the kids would get beads to put on a necklace after they mastered a particular sound–and did those kids love themselves some beaded necklaces… I also look at each kid’s creative abilities in music and art and think because they had such a creative dad, perhaps he paved the way for those talents and interests.
Walking in-stride, Multnomah Falls March 2023
But in discussions Ken and I had when it was clear things were not improving, it meant a lot to him to know that the causes he cared about and supported would, dare I say, ‘benefit’ from his situation. Obviously he focused on raising money for pediatric brain cancer research as evidenced in the Run of Hope participation. But a very sobering and important opportunity presented itself to us by way of our friend Jennie, whose father had succumbed to glioblastoma. After his death, their family helped establish a brain donation research program at the UW Biorepository and Integrated Neuropathology (BRaIN) Laboratory here in Seattle.
As terrible as the prognosis was and the emotional wreckage that followed, having something that Ken himself could *do* or choose, brought a sliver of peace. Maybe Ken could make a small but valuable contribution to glioblastoma research, this complex and elusive disease. So as noted in his obituary, Ken’s brain was donated to this program in 2021.
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Two weeks ago, I finally received the Neuropathological Diagnosis Report, the most thorough brain autopsy one could have, being that it was done by researchers who evaluated every single thing. I also got to speak to the lead investigator of the lab as well as the researcher who wrote the autopsy. It confirmed the obvious about the presence of glioblastoma and ruled out potential issues like Alzheimer’s, Traumatic brain injury and some other issues. However, they did note the presence of age-related tau astrogliopathy (ARTAG) cells. What is notable about this is brain experts don’t expect to see this in people under the age of 60. Whether there is a correlation between glioblastoma and ARTAG remains to be seen but Ken was young comparatively to many glioblastoma patients, and likely most of the other donors in the program, so this finding presents an interesting development for the researchers to investigate.
The other thing that was very important to me was that Ken’s providers, especially his neuro-oncologist, receive this report. I think it’s really rare for treating doctors to get this 360 degree learning from their own patient. Did the tumors look like what they saw on the MRIs? Did the therapies affect the brain in the way they thought they would? Is there anything they wanted to know about the molecular constitution of the tumor and brain tissue? But it’s interesting, the teams are quite siloed in the research lab vs. the treating clinics, despite being part of UW Medicine. So it wasn’t until I suggested the lab send the report to the doctor that they considered doing it. (😲!) Brain researchers naturally don’t have the same perspective as the families and that’s fine, I said to them. But I did let them know the families want to feel some sort of purpose and even closure in this process so maybe make that a routine task if the patient is treated at UW Medicine or even if they’re not? For the researchers, the exploration and analysis work is just beginning.
It sounds like momentum has increased and their funding is expanding. This will allow them to hire a staffer to work exclusively with the families to connect these dots instead of randomizing many of the researchers who have a lot of work they are juggling. It is my hope that patients and families will consider this ultimate ‘gift’ as something they want to do as well, not only as a contribution to science but as part of their own legacies. ❤️
That’s fascinating Kali. I’m so glad you shared this.
I really appreciate this blog and the link to donate to real brain research. I agree that the researchers and hands-on crew should both get the results from the brain studies. Using the link I was sent to Remembering Matt and donated, though I am remembering talented Ken who had so much to offer. Link: https://dlmp.uw.edu/research-labs/keene/BRaIN-lab
Very well written . . . an excellent contribution to science on your part.
Thank you so much for sharing your powerful testimony on brain donation, Kali. It is such an important, tender, brave way to stay in the fight against brain cancer long after the earthly body has completed its run. And thank you for bringing up the point of sharing the autopsy results – when we originally birthed this program we certainly talked about making sure involved medical providers, especially those who’d been in the position of making clinical decisions based on MRI imaging, receive the final report. And time passes and staff changes and priorities shift and even important pieces seem to get buried…precisely why we need more voices, perspectives, eyes, ears, and hearts, involved in these ongoing conversations – we meet annually to revisit the work at the Brain Lab and would love to have you at the table. Our hard-earned wisdom has a place to shine with this incredible passionate team of researchers.