Editor's Note: In the second part of Brendan Locke's guest blog series, he shares the experience he and his wife Melissa had as clinical trial participants. In the midst of their own battle, they also worked to help others in similar situations, which Brendan continues today. If you missed part one, read it here to understand how love and determination helped them tackle an unexpected diagnosis together.
When Melissa's doctor brought the option to participate in an immunotherapy clinical trial to our attention early in her chemotherapy treatment, a spark of hope ignited in us both. The study was showing promise, and Melissa's doctor was as excited as we were to learn that Melissa was eligible to participate. And not only was she eligible, she would be the first sarcoma participant at our hospital. We decided it was the right option for us and enrolled. By summer 2016, Melissa was off chemotherapy and starting the wash-out period to prepare for the the study. She enjoyed her time at home with our young boys while we eagerly awaited the start of the trial.
During that 4-month waiting period, I continued to make all of the connections I could to better understand our options. This is how I discovered Lilly's CoDESIGN program (known as CoLAB at the time), which asks patients and caregivers like us to to provide input to clinical trial protocols. We decided to participate in CoDESIGN not only for self-education, but to use our experience to help others. It created a purpose for what we were going through. We flew to Indianapolis for the session in August 2016 and while we were there received a call from Melissa's doctor with an update regarding the clinical trial. We were filled with hope, yet we still had a lot of administrative processes to go through before Melissa could start the study.
At this point the sense of urgency to find a medicine to combat Melissa's life-threatening disease weighed constantly on our shoulders. We knew we didn't have the luxury of time on our side, but we used this urgency as a force of determination. We consistently encouraged Melissa's doctor to fight hard for us and to do everything possible to get the trial started. Together in collaboration with another hospital also running the trial, we made it happen—Melissa began participating in the clinical trial in November 2016.
Throughout the clinical trial—and our entire experience with synovial sarcoma—Melissa was always onboard and optimistic no matter how bad she felt. While we missed our two young boys immensely during the months we spent in Houston during the trial, we were fortunate to have a strong support network back in Milwaukee to care for them in our absence. Yet the constant travel and time away from home didn't just take a toll on us emotionally but financially, as well. Our travel costs for round-trip flights and months-long housing rentals were all out-of-pocket. While some clinical trials do cover the cost of travel, that wasn't the case for us. I had to acquire the additional travel knowledge necessary for Melissa to continue in the study.
Melissa's clinical trial experience ended in January 2017 when her doctor informed us that it was no longer providing the desired results. While disappointing, the decision did not come with regret. The trial was the right choice for us at the time, and we had to move forward. Melissa went on a chemo pill to continue attacking her sarcoma and was on this pill until she passed away in September 2017.
Her passing was unexpected. In fact, we spent the day before playing football together—one of Melissa's favorite activities. Our family is forever changed with Melissa gone, but today I try to instill in our boys a feeling of appreciation for the years they did spend with her. She taught them how to tie their shoes, walk and roll over—experiences that some kids do not get to have with their moms.
If Melissa was still here, I believe she would emphasize how important it is for sarcoma patients to understand all of their options, including clinical research. This belief was a catalyst for us creating what is now called Melissa's Hope—a travel assistance fund that helps sarcoma patients obtain second opinions. My goal through this fund is to help other mothers, fathers, siblings and friends facing similar diagnoses experience more of life's milestones with their loved ones. This was truly Melissa's hope and I'm honored to continue her legacy.
We always welcome input from the larger clinical research community—patients, caregivers, researchers—and periodically feature their voices on our blog. Hearing from them gives us new viewpoints and insights in making research better.