🎉 A belated recap

This is a shamefully belated recap of the Oct. 12 gathering at Blue Note Hawaiʻi and the #TeamJosé auction that followed. As we shared in our last update a couple of weeks ago, José had a pretty severe infection that resulted in sepsis about a week and a half after the event, so his well-being and comfort has been our priority.

A smashing success

The event was a smashing success in all the ways that matter most: José was able to attend and we rolled his power wheelchair front and center of the stage where he soaked in live music and all the love from everyone in attendance for nearly three hours. He had his best night of sleep in weeks that night.

Those who are active on Facebook may have seen the recap I managed to post the day after the event which I’ll share here:

For those who missed it, yesterday’s event was everything we hoped it could be (minus many treasured friends and family whom we wish could have been part of it).

In addition to a behind the scenes planning team that included Lisa Maruyama, Amy Hennessey, Linda Lewis Ezuka, Charlene Flanter, Krystal Winn, Tamatha Perryman, Tyrie Jenkins, Christine Brammer, Jan Harada, and Susan Tai-Gallegos, HUGE thanks to the team at Blue Note Hawaiʻi where the event was hosted as well as OUTRIGGER Waikīkī Beach Resort.

With the generosity of dear friends we were able to fly one of José’s sisters, Gretchen, in from California so she could co-emcee along with Bill Dorman of Hawaiʻi Public Radio, and Outrigger generously provided her lodging.

But as you know, I like to keep things real—so I also want to share what led up to our arrival to really impress upon everyone how remarkable it was that José was able to attend and make it through the entirety of the event.

In the days leading up to the event, José had been extremely tired and lethargic and experienced a bit more coughing than usual. In fact, by Friday afternoon when I’d planned to finish up a few loose ends his coughing and discomfort really took over.

I really struggled to stave off panic after a couple of hours of standing by his bedside.

Turns out, José didn’t sleep for most of Friday night. He stopped calling me at some point allowing me to get in a few hours of sleep which meant that when I checked on him just before 5:00 a.m. he was drenched in phlegm that he’d been spitting up on himself so as not to choke.

I lost it. At that point I didn’t know if either of us would make it out the door.

Our plan had been that a friend would pick up our rescue dog Coco at 8-ish and another friend would pick me up just after that so I could be at Blue Note early to help with any set-up.

Our caregiver Abby would finish José’s morning routine and get him ready, transferred into his power wheelchair, and downstairs by 9:30 a.m. for our pre-scheduled, wheelchair-friendly transport getting him to the event by the official 10:00 a.m. start time.

I started packing event supplies that I hadn’t had time to do on Friday as planned and then took miss Coco for her morning walk. She left on her adventure at 8:00 and Amy picked up the supplies shortly thereafter. Then Abby and I tag-teamed getting all of José’s supplies packed up and getting him ready.

At 9:22 a.m., after getting José’s leg bag on (for his external catheter), then pants, using the ceiling lift to transfer him into his power wheelchair, wiping him down and getting his fresh shirt on, I discovered his catheter had failed.

9:22 a.m.

Shuttle pick up at 9:30 a.m.

I’ll spare you the details of what happened next, but it’s important to understand that getting him back in the sling, transferring him back to bed, taking off his pants, changing the external catheter, re-dressing him, slinging him back up, transferring him BACK into his wheelchair, etc. was NOT AN OPTION. It wasn’t just a time issue, it takes a lot out of José.

With some quick thinking we got him cleaned, catheter changed, and out the door by 9:46 a.m.

He arrived at the event on time.

I arrived a few minutes late and as I walked into the showroom, burst into tears.

We made it. And it was awesome.

The performers, the food, Blue Note team, everyone who was there to help, the energy and love. Amazing. Truly.

And huge props to Abby. Without her help, neither of us would have made it to the event. I would not have been able to do it myself—mentally or physically.

p.s. the other thing that I didn’t want to share until now so as not to detract from our focus on José is that my 99-year old grandmother Gladys (a.k.a. Pepper) was admitted to the hospital two nights before the event. Her absence was deeply felt. 🙏🏽💗 Any healing vibes you can send her way are appreciated.

Event photo gallery

Thanks to friend and colleague Jennifer Oyer, we were able to enlist the services of Nick Smith to photograph the Oct. 12 event.

Use the arrows at either side of the image below to scroll through the photos at your own pace.

Mahalo to the performers!

The talented musicians who joined us included:

• Justin Murata, Shon Kihewa, and Blair Sataraka of ‘Anakala
• Mark Caldeira and Darrell Aquino of Kailua Bay Buddies
• Sonny Silva, Joshua Kaye, and John Kolivas of Hulaville Rhythm Aces

The two short video clips that follow feature two of José’s colleagues from Hawaiʻi Public Radio who made special appearances during the event.

Updating our story

Many of you have previously viewed the 8-minute film captured by Jay Hanamura of Giant Theory for Nā Lei Aloha Foundation’s 2021 Bridge of Friendship.

A few weeks before the event at Blue Note Hawaiʻi we were gifted with the generous hearts of Jay Hanamura, Mark Oliver Francisco, Mathew Medeiros, and Debbie Nishimoto who helped to capture a brief slice of life documenting how things have changed in the three years since that initial footage was recorded.

If you’ve seen the 2021 film, the update starts just before the 8-minute mark. This updated version premiered during the Oct. 12, 2024 event at Blue Note.

Auction goal met!

A few days after the event, bidding opened for our #TeamJosé online auction which exceeded our expectations thanks to the immeasurable support of everyone who made it possible.

Creative contributions were submitted by friends and family across the country, including: California, Colorado, Florida, Hawaii, Indiana, Mississippi, Montana, Pennsylvania, Tennessee, Texas, Utah, Vermont and Washington, and included a wide range of in-person activities, virtual experiences, keepsakes, and other delights delivered via postal mail.

The funds raised allow us to continue making decisions based on the best care options available for people living with ALS, like José (we have some updates to share on that front, too!). Even better, it’s also creating new connections between people who know and love us which makes it a heartwarming double-win.

with all our love,
José & Jen