Ken Status

People who make music are special. I have always felt this being mostly non-musical myself. In all the time I knew him, I watched Ken think up rhythms then jot down musical notes when he got inspired. There’s even an envelope still down in the music room today full of scraps of paper with musical notations on them. I do wonder if Calvin, our resident piano student of four years, will ever feel inclined to look through those and perhaps become inspired to iterate. No pressure though, Calvin is his own person with his own musical journey. But that envelope is there should he ever be curious…

Ken wrote and produced some songs after we met, especially funny, surprise ones for my birthday or even one including the kids for Mother’s Day. But life got busy and he had less time for the pursuit of original music making. I know he enjoyed one-off musical dalliances with friends like David F. in NY who produced a song together as well as riffing with Dan V. when we’d visit Towson, or with Billy when he’d visit LA and later with his friend Bob S. from work. However, I had a vague awareness that earlier in his life he had been even more prolific with music writing. But I had no idea how prolific he had been.

In March 2012, a 20+ year reunion to perform mostly covers with his post-college “band” No Rush in Ken’s Seattle man cave/music room scratched the performance itch. We haphazardly recorded everything and shot slapdash videos. One of the No Rush band members, Charly, is a piano teacher and has a doctorate in music. In their 20’s, Charly, Ken and the other member, Dave P., would record audio cassettes of music they had written plus commentary + hijinks then send them back and forth to each other. When Charly was out visiting Ken for the last time in April 2021, he took with permission the musical notebook Ken used to write his early works as well as those audio cassettes Ken still had. After Ken’s death, I found more in going through some boxes and sent those to Charly as well.

In one of the most generous and meaningful gestures, Charly has digitized the cassette tapes, analyzed the written compositions, transcribed and performed them so we know what some of the previously unperformed pieces sound like. He even arranged some of Ken’s easier pieces in a way that Calvin could actually learn to play them at his current level. And in this very special case, Charly ‘collaborated’ with Ken by finishing this initially incomplete (but now gorgeous!) piece so it becomes the work of two composers: Ken & Charly. Also if that were not enough, Charly’s adult daughter Claire, who is a violinist, contributed to fully realize the range of this duet. It’s hard for me to put into words how precious, surprising and incredible this is. To have something new from Ken, something surprising and inspired is a gift only Charly could give us. Not only because of his level of expertise in music but how he knew Ken and can channel his intent, influences and general vibe by honoring the man and musician he was.

It’s so exciting to share this and so much appreciation goes out to Charly and his daughter Claire for making this happen. ❤️🎵

Here is a rundown of how the track goes:
0:00 – 0:30 Piano introduction
0:30 – 1:45 Ken’s theme (Everything up through this point is exactly as written in Ken’s sketchbook.)
1:45 – 2:40 Charly’s theme
2:40 – 3:50 Ken’s theme returns but the first part is changed to the minor key.
3:50 – 4:40 Coda – Charly put this together based on Ken’s theme, but with some rhythmic variations that Ken would have appreciated.

Last Monday, Sidney’s Spanish 4 class observed Día de Muertos or Day of the Dead. The students were asked a few weeks prior to pick a relative or a famous person they would like to give a two minute speech about in front of the class (in Spanish, of course). I was a little surprised that Sidney chose Ken simply because I didn’t know what effect speaking about her Dad in front of a class of 32 in another language would have. This marked the most public expression of her feelings & memories about him to date. But I should not have been worried. Sidney has shown me time and again that she rises to challenges and can do hard things. And while this speech was a memorialization–capturing favorite memories of Ken–I didn’t know how it would go. But she said it went smoothly and I am so proud of her. In her lead up to the day, she practiced the speech with me and I think with my 2 years of high school Spanish, I understood about 70% of it. She later read me a translated version that included details of remembering how she enjoyed him reading the Harry Potter books to her in various voices, how he would help her with math and how he made up fun games to help with learning (especially reading). But it all just shows me that I need to be more trusting that the kids know their capacities when it comes to talking & sharing about Ken and how it will make them feel. 

Here is a photo of the mini ofrenda (colorful altar) that Sidney made to go along with her speech.

Last Sunday, we participated in the 2024 Run of Hope at Seward Park, benefiting pediatric cancer research at Seattle Children’s Hospital. As followers of this blog know, Ken found this event back in 2019 and deeply connected with it’s goal and hope for the future. It feels good to continue that tradition, especially now that Sidney is a full-fledged runner herself. But last Sunday was a perfect morning in Seattle. Not too hot, sunny/overcast and not bad traffic to get to SE Seattle. Since this was our second in-person event, we knew a bit more of where to park, where to stand, where the port-a-potties were located.

Through generous friends and family and the match we promised, we raised over $4,500 this year! Thank you 🎉 to everyone who donated and encouraged us. We really appreciate it! Sidney is now in her second year of club cross country and high school year-round ultimate, so the training shows.

She finished third in her age division and even got a medal! Great job on your run Sidney! So proud of you! 9:06/mi pace for a total time of 28:17

Calvin and I walked the 3K and he ended up finishing first in his age division for walking. (Unfortunately there’s no medals for that.) But one thing someone should get a medal for, is who has grown the most in this family in the last year…

The side-by-side pics were taken a year apart at this exact event.

It’s that time of year again! Sidney is running the 5K and Mom & Cal are walking the 3K for this awesome event, The Run of Hope. It benefits pediatric cancer research at Seattle Children’s and this will be the 5th year members of our family have participated, starting with Ken in 2019. Please join us this year in helping support the important research and work being done to give patients hope, longevity and better quality of life. Our family will match all donations made to Sidney’s fundraiser by the day of the race on Sunday, September 22. Click the link below to donate. Thank you!!

https://runsignup.com/sidneyruns

Photos from last year…

Today marks 3 years since Ken died. It’s hard to believe in some ways. Time is like a stretchy rubber band: sometimes it feels like it just happened but then with all the changes in adolescence and the things the kids and I’ve done since, it feels like so long ago. 

However, it is different this year, as I mentioned to my therapist, and we talked a lot about how it feels like there is just ‘more space’.

While I didn’t know what to expect, I couldn’t imagine a loosened grip from the memories of those final weeks with Ken. That first year after, in 2022, it was still so visceral and vivid when I thought about May. I could map back to exactly what I was doing in 2021 on any specific day in that month. It was all of us in that pressure cooker attempting to hold on to time with brave-faced urgency in an undercurrent of anticipatory grief.

Since then and in the spirit of what Ken embodied, the kids & I have continued to live, grow, try things and heal. So now in 2024, that heavy May is in some ways mercifully more difficult to access with sharp focus. (And honestly, those aren’t the memories I want to keep sharp anyway.) Those exact daily memories now start to recede like waves–but the feeling of them will always linger. I’ve noticed in my widow community and in other bereaved groups there is mention of this memory fading. There’s also talk in those groups of a fear that it could fade the positive memories too. I know that is a real concern especially when it begins to take more effort to conjure a memory from one’s own mind. But anyone who knows me knows there is so much photographic, video and written content of Ken that continues to exist and I embrace the responsibility of maintaining it.

At the dinner table the other night when discussing this day and what we might do to observe it, Calvin questioned why we chose this day as opposed to other ones with happier and more vital experiences with him. Good point, I said. So going forward now that the kids are older, I think both of them have ways they honor their dad that are meaningful to them which don’t have to be pinned to his ‘death-iversary’ or any other specific day for that matter. For instance, just last weekend, Sidney made chocolate chip cookies, the Toll House kind–Ken’s favorite, and used Ken’s method of hand mixing the ingredients (with clean, bare hands). Somehow cookies made that way always tasted better than the usual way and Sidney’s were indeed excellent.

And so I’ve encouraged the kids to find their own ways and times to think about and honor Ken instead of insisting it be specific to something like today or what I think is appropriate. Grief and remembrance is very personal and as I have experienced, it evolves.

You never know what one will find when sorting through a video trove. Like most people, Ken had a YouTube account where he uploaded videos. The videos that are publicly accessible are many of his Wii Theremin experiments and birthday videos we made for friends during the pandemic. But tonight I went in there and found a few more gems that were previously not public. A rap that he had made for an East Coast Thanksgiving, trial & errors with new instruments, Calvin on his bike and then this one: a piano piece he learned and recorded in 2016. Evidently this music has some connection to members in his family. I’m not exactly sure how but it’s amazing to see him play it. I thought I’d share as 2023 winds to a close.

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.

***

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. ❤️

Sidney did it! I’m so incredibly proud of Sidney who committed to do their first 5k earlier this year and chose the Run of Hope to raise money for Seattle Children’s Hospital, specifically in brain tumor research. [BTW, they are still hoping to edge closer to their goal and it’s not too late to donate HERE.] Sidney reports that during the race they didn’t stop and maintained a pace of 9:35 per mile! Woot! Sidney really made this event their own and focused on this as a debut into running. For me, this was supporting Sidney *and* honoring the cause Ken passionately advocated for after his diagnosis.

This is an event we’ve had some connection to for awhile but it marks the first time either the kids or myself had been to the event in-person. It was also the first time we’d been to Seward Park in all the time we’ve lived in Seattle. The rain mercifully held off all morning and it was a perfect temperature in high 50s/low 60s as Sidney set off with the runners. Cal and I positioned ourselves just behind them, in front of the walking group so we could catch a glimpse of Sidney. It was a well-attended event with a lot of groups clearly supporting a person (or in one case a dog) who is or had been affected by cancer. They also brought up on stage and recognized the staff and medical providers who work at Children’s in brain tumor research. I was encouraged to hear that they are steps closer to bringing vaccine and CAR-T cell therapy to standardized cancer care that will eventually replace the blunt and side-effect laden tools of chemotherapy and radiation. That cannot come fast enough but the money we raise continues to fuel that breakthrough.

So, THANK YOU to friends and family who have given donations thus far! And again, there’s still time to donate to this great & important cause: https://runsignup.com/sidneyruns

❤️❤️❤️

Hey everyone, Sidney is going to be running in the Run of Hope Seattle 5K on Sunday 9/24 that raises funds for Pediatric Cancer Research at Children’s Hospital in Seattle. It’s Sidney’s first running event and Sid’s been gearing up for it over the past few months! Calvin and I are going to walk the 3K at the event too. You may remember that this is the same event that Ken felt extremely connected to and ran for both 2019 and 2020 events. All the funds Sidney is raising will go toward the pediatric brain tumor research team.

Please consider making a donation to Sidney’s fundraising page by September 24th if you’d like to help. Thank you and go Sidney!

https://www.runofhopeseattle.org/sidneyruns

Earlier today the kids and I remembered Ken by sitting out by the fig tree after dinner, eating one of his favorite treats: chocolate chip cookies (mine gluten-free).

It’s been two years today and we talked about some of our favorite memories. Easily, his example of living life to the fullest and doing the most creative things are his most enduring legacy. We miss Ken, the unique dad/husband/friend/human, as the days/weeks/months roll on but we keep alive his spirit of adventure in our hearts always. ❤️