Hi Friends.
Husband Will here. I wanted to offer thanks and also give you all an update on Sarah. While you are here please revisit some of her amazing words from recent months. She is a light like no other I know.
The benefit was amazing, so much love and generosity. Thanks to family, friends, friends of friends... it was a beautiful afternoon, our family was strengthened by your company, and our ability to fight this disease was boosted through your purchases and donations. I sincerely wish I could send you all individual thanks but this is the best I can muster right now. It means so much to Wylie, Finley, and I that you care so much about their mom.
Subsequent to the benefit, Sarah was ruled out of one clinical trial at Bethesda. She was too much of an outlier towards the results the researchers were seeking. Unfortunately success of trials and money to be gained via pharmaceuticals is a huge factor in being selected for these potentially lifesaving opportunities. We remained in touch with the network and were hopeful to be selected for another promising trial. After going through required tests, prodding, and lab works Sarah was ineligible due to a single lab result. As you can imagine this was devastating for us.
We turned to our holistic doctor to help us design our own defense. Sarah's knowledge of studies and perseverance in staying up to date with the latest papers and research was a huge benefit towards this process. We started on aggressive measures to slow progression.
All of the above was only during the course of the two weeks following the benefit event. During this time we enjoyed a beautiful weekend in Pentwater with her parents and siblings - she even made it into the 50 degree water with a wetsuit. Mobility was not easy (beaches + wheel chairs do not mix well) but it worked out.
Also, Sarah proudly turned in her 3-year Prius lease - she had worried it would be her last car when we put pen to paper in 2015. She drove home with a new model, and a boost - she was going to beat this, and this also would NOT be her last car.
She was able to attend Finley's end of school year orchestra concert (amazing!), enjoyed back to back days of backyard barbecue fun with friends in Ann Arbor and Dexter, and was plotting our next moves in beating this disease.
On June 5, the pain in her hip became extreme, and we took her to UM Hospital. X-ray was inconclusive but an MRI revealed a fracture in her pelvis. She was admitted, and stayed for 4 days.
Per her team of physicians, she is looking at a probably 6-month healing period for her hip. With every transfer and movement there is a bit of danger. But Sarah was so happy to not be on bedrest, to still have a small degree of freedom.
In the past week, and particularly the past few days, her condition has rapidly deteriorated. We are waiting on reading of a scan done Friday to learn if there is any information that the doctors can provide about her prognosis. While hope and optimism are always our objectives this outlook is becoming increasingly difficult. Between pain, disease progression, and heavy medications she is a shell of herself.
I've had tearful conversations with W and F about the potential that their mom, this time, might not get better, like she always has before. My strength gives out as I see hers leave.
Your prayers, love, and affection mean so much to us - keep sending them - but also start sending goodbyes and thanks for all she has been to us. We have been so lucky to have Sarah with us for these 5 years post-diagnosis. She has been an absolute inspiration to me, to her children, to the world. Her fire burns bright still, but it's deep inside, and the spark is fading. If anyone can still beat the odds it is her. But this will be a monumental challenge, as her body and mind are failing her.
I am so scared. love you all so much.
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