Finding a Long-term Cure

I understand some of you did not receive the February update about Abby’s Ewing’s Sarcoma coming back.  I’m sorry if you’re just hearing now – the past seven weeks have been touch-and-go as we try and find a new long-term cure, reset our support infrastructure, and keep a positive mindset.  Here’s an update on each of these efforts and some ways you can help us.

Finding a Cure

We’re all-in on finding a cure!  Less than 24 hours after re-diagnosis, Abby was back on chemotherapy, this time with a treatment called Irinotecan.  The nurses call it “I run to the can” due to its primary side effect.  Aside from living up to its name for six weeks, it didn’t do much else, and we’re now embarking on another chemo treatment in search of something that will stop the tumor from spreading further.  We are incredibly hopeful that Abby’s team and her body will find a way to team up to combat her cancer for good.  With recent breakthroughs in cancer treatments, including in our own back yard at Fred Hutch, there’s great reason for hope and we’re starting to line up all our options. One near term step to help us understand the spectrum of possibilities will be to visit with other Ewing’s Sarcoma experts at world-leading institutions in New York, Houston, and Boston to explore clinical trials.  If you or someone close to you would be willing to host us in one of these cities, please e-mail me and I will be in touch as we advance our plans.

Getting Support

In February we found ourselves back in an all-too-familiar position juggling treatments, family life, work, etc. and we are so grateful for all the big and little things you’ve all done for us to help stabilize our home.  So many of you have gone above and beyond – bringing us meals, managing rides, coordinating playdates, sending encouragement and prayers and nearly everything else.  In every way possible you have filled our cups and then some.  On Sunday, with great generosity and love from the Seattle Chesed fund, a combined Seward Park synagogue effort, we were able to welcome a new au pair into our home.  Sandy Romero Estevez comes to us from Mexico City by way of Dallas. The kids are so excited to have another big sister-like figure here at home.  For Abby and me, Sandy gives us the ability to redirect much of our energy into Abby’s healing, knowing that Jaren and Miri are in loving hands.

Staying Positive

It’s been a rough few visits with our SCCA oncology team, but we’re managing to keep our heads up and focus on each next step in front of us. Keep sending us all your wonderful pick me ups.  Your notes, e-mails, phone calls, texts, letters, get-togethers and visits, prayers, and more keep us grounded in our path ahead.  You’ll read more below about Obliteride, an organization Abby has committed time and energy to support this year. While we receive immense support, it feels extra good to give right now, and we invite you to do some good together with us this year. Details below.

How Can You Help?

For Abby:

  • Send Abby major positivity! If you are religious or spiritual, please focus your prayers and meditations that her new chemotherapy treatment attacks the cancer, preventing it from spreading and receding its progress until it is in complete remission. Pray for the pain in her right side and back to go away completely. Abby’s Hebrew name is Rachel Chaya.
  • Visit Abby at our place – Abby’s back pain has limited her mobility a bit and she’s found some comfortable perches in our home. Note that rehashing her own situation takes a pretty big emotional toll on Abby right now.  I’m sure she’d much rather hear all about what’s going on with you and your families, learning something new, and just enjoy your company. Mid mornings and early afternoons are good times to come by.
  • Get Abby (less) high! We’re heading to the local pot dispensary tonight to explore new ways to quash her back pain without sending her into such an opioid daze.  If you have other solves, let us know.
  • Visit Abby at SCCA – All of her treatments are outpatient at SCCA (no overnights!). Abby’s next treatment is this Thursday from 3-6:30pm.
  • Ride Obliteride 2016 with Team Abby’s Army – Help fuel breakthrough cancer research at Fred Hutch. Distances start at 10 miles. Sign up today and let’s do this together! Big ups to Joe Goldberg and Rachel Bender Ignacio and David Ignacio for being trailblazers.
  • Get out of Seattle – When Abby’s up to it, she likes to get out of dodge and clear her mind. A few weeks back we went up to see the tulips in Skagit River Valley tulips and she had a great time. Message her and see if you can go for a ride together, or let me know if you’d let our family use your second home for a quick weekend getaway.

 

For Justin, Jaren and Miri:

  • Help me explore treatment options – Just last night by coincidence, I stumbled across this Wired article, which describes modern research approaches and includes an anecdote about a Ewing’s patient’s cure. There’s some amazing new innovations coming – likely much more than I can find on my own. If you have experience with Ewing’s, knowledge of trials or connections to Ewing’s experts, or are just interested in helping me learn what I need to know about new trials, let me know. I realize this is casting a wide net, but for the next two weeks we’re on a fact finding mission.
  • Host us – Again second opinions may take us to your city. Direct message me if you have a place we can stay.
  • Help me out around the house – There’s a million little projects with your name on it. Let me know how much time you have and I’ll help coordinate a time.
  • Rides – Let’s train together for Obliteride. If you’re interested in short, mellow rides let’s talk.
  • Weekend playdates – We’ve got weekdays covered now, but a weekend playdate gives the kids a chance to have some fun, and lets me get some fresh air or catch up on the backlog of housework.
  • Au Pair outings – Some of you have au pairs and we’d love to introduce Sandy to them so she and the kids can do some outings together.

Thanks again for being here for us.  We are where we are, and we’re so blessed to have all of you here rallying around us and cheering us on.

Love and Healing,

Justin, Abby, Jaren, Miri and Sandy

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s