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Eden's Updates

Get updates on Eden's progress and wish all the Z's well.

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Update on Eden

To our friends and family, Eden has continued a pretty amazing recovery since her diagnosis almost two and a half years ago. And, still, skies look pretty good, but we've been dealing with some passing clouds over the past 5 months. In July, an area in her brain lit up on her regular, quarterly MRI. Given the location of the spot, the lack of symptoms, and a number of other factors, the doctors had a strong suspicion that this was cellular necrosis, damage to healthy cells as a result of her radiation treatment a couple of years ago and not tumor progression. While proton radiation is fairly exact, there is often collateral damage to healthy cells in the surrounding tissue. We were put in a bit of a holding pattern and continued to have other types of imaging done over the next several months, including MRI with spectroscopy as well as a PET scan. The additional scans were being used to verify the treatment effect hypothesis.

In the past couple of months, Eden has developed some minor symptoms related to the cellular necrosis including slight physical impairment on her left side and some minor forgetfulness and spaciness. It is because Eden is so not spacey that I had been noticing these minor changes. And the additional scans we've done over these last couple of months have shown the area of likely treatment effect has expanded in size.

When we last met with our neuro oncologist a couple of weeks ago, we were given an option to start an 8-week treatment with Avastin, a monoclonal antibody that is effective at reducing blood flow to areas with a lot of vascular activity. Cellular necrosis has a lot of active vascular activity and that extra pressure in the brain has nowhere to go, so it can affect brain function. But, given her symptoms were pretty mild then, we opted to wait on that. Like any other drug, it has side effects, and it also would likely mask the ability to distinguish between treatment effect and any possible cancer cell growth. 

This past Friday, during dinner at our friends' house, Eden had some heightened symptoms including a harsh headache and a bit of drooping on the left side of her mouth which caused some speech slurring. I was about 95% leaning toward going to the ER, but when we arrived home from our friends' house, her headache did not seem debilitating and her mouth droop seemed to mostly be going away. We have a doctor's appointment this week and thought we would just start on the Avastin asap.

However, on Saturday, the symptoms increased enough by lunchtime that I took Eden to the ER. She had a splitting headache, and her left hand was numb and left side of her body was very weak. It was a bit of a tough afternoon in the ER, but they started Eden immediately on a steroid to reduce the brain swelling that is the cause of the symptoms. It quickly alleviated the headache and we were able to come home late Saturday evening. She is now taking the steroid orally and will begin the Avastin as soon as possible.

I have hesitated to share what was going on these past few months because there was enough uncertainty that we mainly did not want to overly worry Alina and Julia. Over the summer, there wasn't enough confidence that the scans were showing treatment effect vs. tumor progression. We figured we would wait for greater confidence by our doctors before talking with the girls and sharing more widely with friends and family.

Eden and I both feel optimistic that the treatment effect will be controlled and will subside. We don't know exactly how long it will take and so we wanted to share more widely. Thanks for everyone's love and support.


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