Ken Status

Hi all,

Today’s MRI looked pretty decent. There are a few minor, small dots of contrast near the central tumor area which are likely to be lightly bleeding spots from the radiation therapy. Their size isn’t very major and thankfully other contrast areas aren’t showing growth since the prior MRI. One fairly common issue from Lomustine (my new chemo medication) is a reduction of platelets / white blood cells. Thankfully it’s not causing any physical symptoms but until the platelets come back up I’ll be running for exercise instead of dangerously skateboarding – one spec of sadness in a life that’s otherwise beyond expectations.

As for our entire planet, Covid-19 is causing significant issues for many. We’ve got you all in our thoughts and are wishing you good health and mental wellness. Hang in there, I’ll send another update after the next MRI in 8 weeks.

Ken

Hi, friends.

This morning I had an MRI at UW Medical Center, followed by a meeting with my neruo-oncologist Dr. Tresa McGranahan. The bottom line is that the 3 contrast areas from the prior MRI have grown slightly, appearing to be some mix of scar tissue and cancer growth. Thankfully this is not working into new areas, but the chemotherapy prescription I’ve used to date (Temodar) doesn’t seem to be very effective. As such, I’ll be switching to a different medication (Gleostine) on Tuesday, and at end of April I’ll get another MRI to hopefully confirm it has better results.

This morning I also had another language test showing me 80 simple drawings with four seconds to identify each one. I identified 90 percent which is better than expected and confirms my language ability is still very much intact, despite occasional word misses — that’s good news.

Thanks for your support, and stay healthy!

Last week we had a super Disneyland trip! Despite taking oral chemo during the same week my energy level remained high (unlike the prior chemo cycle in cold, rainy Seattle) and the vacation was a real delight.

As for determining which medical treatment I’ll proceed with, that part was challenging and took more research, conversations and visits with medical teams across the country. Kali invested a lot of time and energy leading the effort, which took a serious toll on her own energy and peace in addition to planning a robust Disney trip, but ultimately we came to a good conclusion: I’m holding off on a second round of brain surgery for now, and my next MRI in two weeks will shed more light on what’s happening in there and how best to move forward. The story of how we got there is long and detailed, I’ll spare you the several paragraphs but can’t say enough how many hugs and thanks Kali deserves here.

This past week my life has mellowed out in good ways: ramping back up into work at Google, getting a run or skateboarding session here and there, helping the kids with school, hanging out with Kali, friends and family… good times for sure.

from Kali

Two weeks ago, which feels like months now, Ken and I drove back to Ballard in Friday rush hour traffic tense and a bit shaken after receiving the discouraging initial MRI reading and suggested treatment. Although his doctor had suggested a next step (cyberknife–intensive radiation), I felt unsettled by the fact that this was still a short-term solution and it just felt like playing wack-a-mole. I kept having a nagging suspicion that even the most well-meaning doctors can default to the mindset: if my tool is a hammer, then everything looks like a nail. 

But after the first 24 hours of sitting with it and wondering what else was out there, we plunged into the deep end of clinical trials and research. After calling upon family friends and people Ken was fortunate enough to have met earlier, we learned valuable tips like which programs to contact, which doctors were particularly helpful, what terminology is used in the clinical trial database, what therapies are showing promise and what other resources should we be looking at. We hit the ground running and we were able to get on the radar of over 8 programs across the country and seek two separate second opinions which provided nuance and a more hopeful reading of that ominous MRI. Every day in the past 2 weeks has brought a new revelation or pathway or door to knock on, and every day I am grateful to the individuals who have encouraged us to keep going and given us tips and support to keep reaching. We are far from done and have expanded our medical team to include some pretty kick-ass experts. That makes me hopeful and determined to keep pushing, because if there is anything I’m good at, it’s that.

from Ken

At this point I’m skipping cyberknife radiation for now in favor of the possibility of a second brain surgery. The rationale is threefold…

1) more radiation would risk more language aphasia, e.g. trouble remembering the names of people I care about (yes, that’s you)

2) by radiating the contrasting cells of my recent MRI we’d never know how much is scar tissue vs more cancer cells (valuable info for guiding subsequent treatment)

3) surgery will yield more biopsy and cell samples which could help support possible future clinical trial options.

I’ll spare the many more details of our decision to simply say how EPIC Kali has been coordinating our connections with the 8 prodigious brain cancer hospitals and medical organizations across the country. I couldn’t be more grateful or fortunate to have her as my partner.

More details to come in the next few weeks.

Hello, friends. I’m sorry this news update isn’t as bright as we hoped for. Yesterday I had my MRI, then met with Dr Henson for his analysis and guidance. Not only is the contrast section continuing to grow, there are a couple other spots above the tumor’s center which are showing contrast as well. In response Dr Henson and two other doctors at Swedish are scheduling me to take a five day treatment plan of “cyberknife” therapy, which is like radiation but more directly focused at the growing bits. I’ll also be quitting the chemotherapy as the growth shows my chemo isn’t effective as intended.

In addition to cyberknife we’re evaluating some clinical trial options which seem to have some positive results. As my upcoming treatments get defined and scheduled I’ll post another update here.

In the meantime we’re also living our life! Helping the kids with school work, playing games with them, watching The Office episodes with Kali :), the simple things sure brighten our days. And we’re grateful for your daily precious support. Be well, February is just around the corner.

I was hoping today’s meeting with Dr. Henson would reveal how my treatment is doing, but it’s not terribly clear yet. The MRI showed that the contrasting section of my brain has grown a little in the last four weeks. Maybe you’re wondering “what does that mean?” — that’s what Dr. Henson and I are also wondering. He gives a two-thirds chance of it being more scar tissue, and a one-third chance of it being more aggressive cancer. Unsurprisingly, the doctor has scheduled an MRI for four weeks from now which should provide more data to confirm what’s happening. If it’s scar tissue we’ll continue with the remaining four months of oral chemotherapy, otherwise we’ll switch to a more focused radiation treatment that would be completed in just five days.

Though waiting for answers is a challenge, I will appreciate each day rather than holding my breath for the next four weeks.

…and Wow, it’s 2020? I’ll spare you the corny banter and just wish you all a memorable, magical time… HAPPY NEW YEAR!!

Happy December, folks.

Yesterday I met with Dr. Henson to get his assessment of last Wednesday’s MRI. Above is the image showing the tumor region pre-radiation (left) and post-radiation (right). While some patients are fortunate enough to see a hollow area in their first post-radiation MRI, it’s also not surprising to see a bright “contrast” area, as in my MRI above. The contrast likely indicates scar tissue of radiated cancer cells, but there’s also a chance that living cells are progressing. Dr. Henson seemed fairly certain my contrast is evidence of scar tissue, but it’s too soon to tell. I’ll have another MRI in January which will hopefully yield more insight.

Thankfully, I get another month of extra time with Kali and the kids, slow “joggy walks”, biology lessons and occasional little naps as the needs arise. I’m looking forward to our Christmas and wish you all a happy holidays as well. Above all, we thank you for your support!

On Tuesday, November 6th, I had my final radiation therapy! While I’m glad to be done with that daily obligation, I’ll miss the awesome staff at Swedish Radiation Oncology in Edmonds.

My medications are significantly reduced now: no chemotherapy for 4 weeks, no anti-nausea pills, no steroids… so my sleep should get more stable (no more waking up at 5am with a bunch of epic ideas driving me out of bed). All in all, I’ve done well under the circumstances. The doctor told me the hair around my left ear should return in a couple months, though it won’t necessarily be the same color and style as before–so that’ll be quite a Christmas gift 🙂

Speaking of gifts, I was allowed to keep the radiation mask. While I’d love to turn it into a wall lamp like Simone Giertz, I’m thinking it could come in handy for next Halloween.

That’s all for now. I’ll share an update after the next MRI.

Have a great Thanksgiving!

Hi, all.

The good news is that things are still pretty routine and similar to my last report. I’ve got 7 radiation treatments remaining, and thus far the symptoms are light: mild fatigue requiring a short afternoon nap about every other day, and a bit of hair loss that makes me look uber-trendy:

In early December I’m due for my first post-radiation MRI. This will likely look problematic as it can reflect inflammation caused by the radiation. In January I’ll have my 2nd post-radiation MRI, which should more clearly indicate how effective the treatment is. I’ll share updates for each of these steps.

In the meantime I’ve become obsessed with learning about biology, including an online course as well as weekly tutoring sessions (I like a challenge, what can I say?) I’m also enjoying spending quality time with the family and friends, it’s been a welcome comfort.

I’m grateful for the many folks who’ve given me rides to my radiation, made food for our family, come for social visits, and expressed their support and concern in various other ways. Thanks so much!

Be well, I’ll share more before long.

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Last Sunday I “ran” (walked + jogged) the 11th annual Run of Hope to benefit pediatric brain tumor research of Seattle Children’s Hospital. The day was beautiful and I owe big thanks to Paul, Suzanne, Sumeer and John who came to join the effort. Also big thanks to those of you who donated! Of the event’s total $500k earned, my effort garnered $1575 (not the $3485 listed on the buggy FirstGiving website) which far exceeds my expectations, and is rather awesome.

Mom came out last week and (in addition to being my chauffeur) really added comfort and delight for us all on my first full week of treatment. Thank you, and happy birthday, Mom!

Today I had my 10th radiation (of 30), and to date I’ve had fairly limited side effects from that or the oral chemotherapy medication. The nurse said she anticipates the rest of my treatment will probably be the same, so needless to say I’m exceedingly grateful for this outcome.

I’ll keep the blog updated periodically, but here’s hoping for a series of boring posts ahead saying “things are still fine” 🙂

Be well & thanks always for your support.