On June 18, 2014, my healthy, handsome 49-year-old husband of 12 years and father of our two young kids had a MRI that unexpectedly showed a brain tumor in his right temporal lobe. Six days later, he had surgery at the University of Washington Medical Center in Seattle (our home town), which was successful in reducing it by approximately 80%. One week later, the tumor was diagnosed as glioblastoma multiforme (GBM).
At the time of diagnosis, our life was filled with all the "normal" things in family life with two young kids ... work, school, soccer, music, playing, outings, family fun. Even with treatment, our first year following GBM was relatively calm, as Mark was still able to work and we all just kept moving forward. Mark was fortunate to qualify for Optune, and was able to layer that treatment in with his chemotherapy, which paired well. We were as aggressive as we could be with treatment options, working to keep at least three lines of treatment going at all times. But we also fiercely protected our family time, keeping things as stable as possible through medical ups and downs and all the associated life adjustments that GBM mandated as we went along.
As we learned more and more about GBM, we became increasingly focused on immunotherapy as our treatment of choice. We wanted to enlist Mark's strong body in the fight against the GBM in his brain. With immunotherapy on our radar, Mark had a second surgery in April 2015 at Cedars-Sinai in California, as we attempted to get into an ICT-107 immunotherapy clinical trial there. When Mark did not qualify for that trial, we sought out all other available immunotherapy trials for Mark at that time. He ended up moving forward with the Opdivo / Nivolumab clinical trial, until the mass effect in Mark's brain caused by the residual tumor forced him to go another direction. We then came back to Seattle, and Mark moved onto Avastin and CCNU, while we regrouped and looked for another immunotherapy avenue.
We found one in April 2016, a T-cell clinical trial at the City of Hope in California, where Mark underwent his third brain surgery (and most extensive, as his tumor had grown considerably). Mark worked hard to stay in the clinical trial at City of Hope, but by May 9 his body simply would not cooperate any more. We returned home to Seattle to be close to family as Mark went into comfort care. We had left no stone unturned, but there were no other treatment options available. Mark passed away on May 31, 2016, at age 51.
In 2014, we started a blog for Team Nelson Strong (www.TNstrong.com) which tells about Mark and our many twists and turns with GBM. Mark was a man of grit and determination, love and kindness, passion and drive, fun and laughter. Once we knew about it, we doggedly sought immunotherapy, believing wholeheartedly that it is the key for a strong body (like Mark's) to assist in the fight against GBM. Mark very much wanted to continue that momentum into the future in order to help others like him gain access to immunotherapy clinical trials and treatment earlier and with greater ease. Your contribution here can help that effort, carrying Mark's perseverance forward in a tangible and meaningful way.
Many thanks and love from #TNstrong.
Christina Nelson, Mark's wife