Ken Status

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.

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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. ❤️

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. ❤️

Following up my July 2022 piece in Parentmap about ‘coping strategies after loss,’ I wanted to delve into the concept of self-care and what that can look like in widowhood. Last week my piece went live (link below). It is personally such an important part of my own healing and moving forward in a healthy way.

Yet while I framed the article around widowhood, everyone who cared about Ken continues life with a Ken-shaped hole in it and I wanted to acknowledge that. American culture doesn’t really do a great job of modeling or making space for loss. I hear over and over again in my widow circles how well-meaning, but ill-equipped general society tends to be around grief/loss. Everyone’s journey is different, of course, but I also think about the friends, extended family & co-workers who were touched by Ken’s presence too. So I think self-care is important for everybody to allow regrouping and replenishment. It additionally provides a reflection about what’s important and how to integrate that into our very being.

https://www.parentmap.com/article/self-care-widowhood

Early September has always been a busy time of transition and change. It marks when the summer officially ends, kids go back to school and we adjust all of our routines. The beginning of the second week also marks Sidney’s birthday time. And now that she’s a teenager (!) she pretty much tells me how she wants to celebrate it. But the beginning of this month always feels like hitting speed bumps at too high a speed. Everyone gets jostled around a bit–though mostly that’s just to sort stuff out.

Of course in 2019’s September, we found out from a follow-up MRI that Ken had a brain tumor requiring immediate brain surgery. Even though the pandemic and the post-diagnosis period of care-giving fuzz out a lot of my direct memory of the last few years, the day before we got that news to the next day, I remember so vividly: the stark contrast between our cruising normal to the moment that life would never be the same. It’s interesting the way things sear themselves into one’s consciousness and leave permanent imprints.

Now early September carries a greater weight even if it doesn’t mean to and it amplifies the things that do happen at this time as well. For this 2022 September, the other added element is the Seattle Schools teachers strike (for which the teachers are completely justified in doing) and SPS’s dereliction of duty in negotiating in good faith. It introduces uncertainty where we’d like to have stability. That feeling of being in a holding pattern is all too familiar in this month and it feels like we can’t move forward. There is however, hope that an agreement will happen soon and the kids can springboard from a camp-filled, gorgeous Seattle summer into a functional, optimistic school year where they are in the oldest cohorts at each of their schools.

Another thing that has typically been observed in recent Septembers was the The Run of Hope, one of Ken’s pet projects & favorite charities which raises money for pediatric brain cancer research. Pre-pandemic, it was an in-person 5K run/walk at a major Seattle park but then it became a virtual event. Now it’s back to in-person. However, after giving this some thought, I am not totally comfortable with an in-person event of this type yet. I inquired about doing this virtually but they are not extending that option. Therefore, this year I’ve decided to simply make a donation straight to the event in honor of Ken. If you would like to do the same, please click on the link in the previous sentence to make a donation. Or if you are wanting to participate in the run/walk, the event is on Sunday 9/25 @ Seward Park and you can register here .

In the near future, I am going to be sharing more information about the Kesem Foundation, which is a national organization that supports children affected by a parent’s cancer. This past summer, the kids went to their incredible sleep-away nature camp, run in tandem with the University of WA. It was a highlight for both kids. This awesome camp was provided free of charge so all families like ours can have this positive experience. I look forward to supporting and promoting their crucial work of helping kids process and live with loss.

So I wrote a thing.

It was my first article in almost 3 years–since Ken was diagnosed back in September 2019. Surprising no one, this most recent effort has to do with coping with grief and some ideas for any other new widow(er)s who might be struggling to figure out where to start. It’s obviously a lot to suddenly be a solo parent, a person in grief, a household manager and a person rebuilding their own lives & their children’s lives. But it’s not a topic that gets talked about much unless you’re in it. So not talking about it -at all- leaves people who are suddenly faced with loss, without a clue what to do next. Perhaps this will help another widow or widower to avoid having to start from zero. The good news is: there are resources and supports out there, if you know where to find them. Unfortunately, I didn’t even touch on self care so I’m hoping I can do a followup piece on that topic.

Article for ParentMap:

https://www.parentmap.com/article/widow-grief-coping-strategies-life-changing-loss

A year ago when I was writing Ken’s obituary I was so sure of the words. They flowed forth despite my sleep-deprivation and agonizing grief. In the end, it was exactly what it was supposed to be.

Today though, I am struggling to find the right words to explain what this year has been like. This is a world that has had a Ken-shaped hole in it. Yet, we have carried on as he insisted and as life demanded. We have and continue to integrate his loss into our very beings but exemplify his adventurous spirit and appreciation of wonder.

I definitely see the world in a more heightened way. Colors are sharper, sounds more nuanced and moments more intense. There is no more veneer of limitless time to do everything we want–I know how fragile & ephemeral it all is. But really, after the challenging times of late, I think we all may understand that pretty well now. So living with authenticity and the embrace of what makes life magical seems the best way to honor him, in addition to raising our children with love, grace and patience. As for the children, in them I see the creative sparks of their dad and the glimpses of talents that are uniquely their own. They luckily have many caring people in their lives too who are keeping an eye on them and with me are there to help, listen and support.

Today we did two things that each of the kids suggested. We walked to a nearby greenspace with our neighbors, the Haldimanns, who were/are integral to dealing with this whole journey we’ve been on. We brought donuts and flowers to have some moments to reflect in nature and enjoy one of Ken’s most favorite treats: Bavarian cream donuts. The kids even made a nature-inspired tribute of his name (see photo). It was a lovely, unstructured moment.

Then once back home, the three of us took the small remainder of Ken’s ashes that we held back from last summer’s Oregon Coast tribute and spread them around the fig tree in the backyard. Ken spent many hours fixated on the eternal problem of keeping creatures from eating his figs so perhaps now his constant presence and vigilance will finally bear out.

And later today Calvin has his dance recital that he’s been working towards all year. So this day reminds us that while we take time to observe, remember and sit in our feelings, life continues and there is always time for dancing.

When I think about Ken, his limitless creativity and his expressions of empathy still shine brightest. He was very open & curious–a doer of extraordinary things. Especially when I think about traveling with him, examples of his desire to understand people unlike himself kept popping up. It was so inspirational to be around someone like that.

Contrast that with how he rarely gave much thought to the mundane domestic details like when the roof needed to be de-mossed or volunteering to make dinner or keeping track of how many lightbulbs we had in the storage closet. No, his preoccupations ascended to the ‘higher callings’ of protecting his fig tree, speed solving a 5×5 rubik’s cube or teaching the children Pi to the 100th digit. In retrospect, it’s endearing, but at the time…perhaps a little less so.

In this past year we’ve had sadness but also joy, grieving but also gratitude. I’m humbled at how we’ve arrived here, and while we’re intact, we’re forever changed. As we remember Ken, we send love and gratitude out to everyone who has been on this journey with us as well. ❤️

In March, we took delivery of two beautifully-crafted, handmade quilts that were made from some of Ken’s coolest t-shirts.
Maureen Lemon is a local seamstress who teaches in the Little Creations program that Sidney took sewing from a few years back. She did an incredible job with the layout, spacing, color choices, fabric choices and ultimately the construction of these beautiful keepsakes with creative touches that I didn’t even know she was going to do.
I wanted these quilts made for the kids so they each have something tangible of their dad’s that they could snuggle up with when they felt like it. In the quilting itself you can see musical notes and stars which adds a really cool touch to unify each quilt with all the various t-shirt patches.
Many thanks to Maureen for flawless execution of this idea. ✂️🪡🧵♥️