Update on Eden: Going Into Battle

In my last update 6 weeks ago, we were feeling pretty confident that Eden's physical and cognitive symptoms were related to "treatment effect" from radiation therapy in 2016. And while the scans have shown that her treatments of a monoclonal antibody, called Avastin, plus some time, have reduced the brain swelling related to treatment effect, it's not the whole story.

In the past three weeks or so, Eden's physical symptoms have gotten a lot worse. Her left side weakness has become fairly extensive left side paralysis. She is so strong and still getting up, walking, and doing stuff around the house, and going for walks outside, but mobility in her left foot, leg, left arm and hand have deteriorated. She's not in pain, but it takes an enormous amount of effort for her to do everyday things like get showered, dressed, get up and down stairs, and prepare food. Unfortunately, Eden has fallen a number of times, so we are working hard on removing or reducing the risks around the house. And her most recent MRI, from nearly 2 weeks ago, reveals that there has been tumor progression in her brain. As a result, she has just started a course of chemotherapy called Temozolomide (called Temodar).

That's a lot to pack into a paragraph. So, let me first address the situation from an optimistic point of view. Her disease, oligodendroglioma, has shown to be effectively treated with Temodar. Temodar has a lower toxicity profile than the chemothepy regimen Eden began in 2016, so quality of life should be good. After her first dose last night, she seems herself today. No nausea, no discomfort, and so that makes me hopeful that she will tolerate this well. Her doctors have recommended at least a 6-month course of the drug, with the potential for up to a year on Temodar.

There are no guarantees, but we are doing our best to think positively about potentially recovering some of the physical losses Eden has experienced. Eden is also putting in the work - going to physical therapy, occupational therapy (think doing stuff around the house, getting dressed, etc.), and cognitive therapy. She's also not sitting around feeling bad. We've been seeing friends, taking walks, making dinner together, and generally trying to have fun.

But, I won't sugarcoat it. We were not looking for this fight right now. We were hoping for a durable, long response period after Eden concluded chemotherapy in October 2017. We wanted years, even a decade, two decades or more. This sucks. I'm angry, scared, upset, and really sad. I can't speak for Eden and the girls and how they feel inside, but I know this is some of the hardest stuff to deal with in life. It literally pains me in my chest to see Eden struggle to get up, turn her foot, or put on shoes. I also feel a profound sense of guilt because she is facing the full burden of brain cancer and not me (don't worry, I have a therapist and he's helping me face a lot of these feelings).

While we weren't looking for this fight, Eden is 100% up to facing it. And because we have such wonderful friends and family, everyone asks how they can help. The truth is that we're still trying to really figure out what we need. We might need some help with food here or there, but mostly we'd love diversion. That could be spontaneous get togethers, planned nights out with friends and family, visits, or most anything else. Eden will likely be working less and possibly on short-term disability in the near term. Friends with flexible schedules could take Eden out for a walk, coffee, lunch, take her for one of her myriad appointments, or just sit on the back deck in the sunshine. Time with friends and family is the one thing that is irreplaceable while also being a completely renewable resource.

Also, I am still trying to get Seattle-area friends to join our NW Brain Freeze event on Saturday, April 6. You don't need to do the polar plunge, just come to the event at 10am and join us and support Eden and other survivors. If you can't make it, please consider donating (just click the Donate button instead of the Join Team button).

With love,

Dan and the rest of the Zasloff family