An Update from Eden and an Ask for Support

Dear friends and family,

We’d like to provide an update to everyone and also ask you to support a really important brain cancer research effort. Read below...

Update

First, an update on Eden. Last update in mid-November, I mentioned that Eden was to begin a treatment called Avastin, in order to help reduce the swelling in her brain that doctors believed was a delayed treatment effect from radiation therapy a couple of years ago. Since November, Eden has had five doses of Avastin, every few weeks. She has tolerated the treatment well (it’s not a chemotherapy), and the last MRI scan she had a couple of weeks ago showed that the swelling had dramatically subsided. All good things. Here are some words directly from Eden:

I’m feeling strong and good-a little tired. I returned to work full time in early January. After a week or so of attempting to work full time, I made the decision to work reduced hours-and fortunately, my company, department and project team were very supportive. I’ve been able to rest, exercise, just try to listen to my body-nap or sleep in when I need to. The time off from work has allowed me to get into a “take care of myself” less stressed routine (I’m at least temporarily off my blood pressure medication). The steroids went to work on the inflammation from the treatment effect and my symptoms of left-sided weakness and general spaciness. Fortunately, I’ve tapered off the steroids (and stopped binge eating) and my 5th Avastin treatment (out of 8), has been very tolerable and about as effective as the steroids. Honestly, the worst part of my infusions is the IV needle. Seriously! I should be a pro by now, right? At my last appointment, my doctor thought that my MRI looked good! The enhancing area (the location that “lit up”) on previous scans looked smaller a few weeks ago (1/15/19) than on the last few MRIs.

My doctor would like for me to have 4 more doses of Avastin into early April and then another MRI to see what is going on with the treatment effect area after the 9th Avastin dose. After that, another MRI (this summer) to see what happens with that area. Hopefully by then, it will be clear to my doctor if there's anything else going on. We continue to be very positive. We feel sure that this is a speed bump. We have a lot of wonderful things to look forward to over the next few months! Alina is graduating from high school and we have lots of family coming in to Seattle to celebrate that. Late next week, we are heading to Portugal (Lisbon and the Algarve) plus a layover night in Dublin. Also, construction has picked up on our house in Port Ludlow! Watching that happen has been exciting. It’s been my dream to have a beach house-somewhere quiet to get away on weekends and during the summer. Thanks for all of your love and support. It means so much!

Speaking of Your Support

Dan here again. A couple of months ago, I joined a volunteer committee with the National Brain Tumor Society, holding its first NW Brain Freeze here in Seattle. It’s a polar-plunge style event taking place on April 6 at the Golden Gardens Bathhouse. While it’s NBTS’ first Brain Freeze in Seattle, the organization holds runs, walks, and brain freezes all around the country raising money for brain tumor research. Their mission is to discover a cure, deliver effective treatments, and advocate for patients and care partners.

This is where we need YOU! There are three great ways to get involved:

1. Join Team Eden. Plunge with us, and help us raise funds! It’s easy, and it’s going to be a blast. And, we want the love and support of friends and family all around us. Visit our team page and select “Join Team.” Even if you don’t want to raise funds, you can join our team for $25 and just have fun jumping in Puget Sound with us.
2. Support Team Eden. If you’re out of town, or won’t be around April 6, please visit our team page and select “Donate Now.” All of the funds Team Eden raises will be earmarked for NBTS Oligodendroglioma research, the very disease affecting Eden and tens of thousands of others.
3. Sponsor as a Company. We are looking for companies, as community leaders, to sponsor and support the NW Brain Freeze. For the effort, there are all kinds of recognition available starting for just $250 and up. Here’s the sponsorship brochure that describes the options and makes it easy. Reach out to me directly if you are interested: [email protected]

The total fundraising goal for Seattle’s 1st annual NW Brain Freeze event is a modest $50,000. And with your support, I think we can knock the top off that number!

Let’s do this! Go Team Eden!

With love,

Dan, Eden, Alina and Julia