All, I wanted to provide everyone an update. Sadly, my mom passed away last night in St. Louis. She was surrounded by her family and friends. She could hear us nearly to the end and we know that she is now safe. We are stunned and everyone that knows her (or even saw her 3 weeks ago) cannot believe it.
Through a referral in Chicago, we are making contact with the Center of Cancer Research (National Institute of Health) to learn from this disease and hopefully, unlock a new clue that can help others. We have reached out to Dr. Thorgeirsson today and are getting an autopsy underway ASAP.
If anyone knows Dr. Thorgeirsson personally (I have sent him an email), please let him know that we are working toward giving him any information that he needs. I'm hoping to hear from him soon but we are working with his team to send them what they may need.
I'm grateful for the support, help and kindness that this patient forum has provided. Hearing your stories and having you as a part of this terrible event has softened the blow and given me some peace. I wish everyone the best and hope that my mother, Ellen Spengemann, can help your loved ones and others to come to have a good, solid fighting change to beat this cancer and live life as it should be.
Love to you all,