Tara Miller: Making the best of it
I have done a few stories on fellow cancer patients, and one in particular continues to resonate with the mission of the Patient #1 blog. Tara Miller grew up at the Jersey Shore, not far from where my grandparents lived, and was set to be the next big legal expert in Atlantic County until melanoma struck. She was part of my summer 2014 cancer research update, with her uplifting story of starting a cancer research foundation in the middle of her own fight. She and I were supposed to receive patient awards together in December; unfortunately her health took a turn sideways and she passed away at the age of 29.
Since her passing, I have gotten to know the Miller family. They have tried to follow Tara's motto and "make the best" of their loss by continuing Tara's mission. Her twin sister Lauren led the effort to become involved in the melanoma world, and the Tara Miller Melanoma Foundation continues to support research by underwriting their "Make The Best Of It Bash" at the Tropicana Casino in Atlantic City. (The 2015 bash is next Thursday, July 2 — more details below.)
Tara explained in her blog why she wanted to start this foundation: "According to statistics, 75 percent of Stage 4 melanoma patients like myself are dead within a year of their diagnosis — I was diagnosed 11 months ago, and even after having somewhere around 14 brain tumors — yes I lost count — I know that those aren't good odds. I can't control those statistics, but part of making the best of it is accepting what I can't control and focusing on what I can control. So, although we can't change what the statistics on melanoma have been, we chose to make the best of it and try to help change where they are going."
Having never met Tara, but feeling like I kind of know her through her family and our shared ups and downs, I asked Lauren for some insight on her sister and the event, and got back WAY more than I could fit here. Her enthusiasm for furthering her sister's legacy is as admirable as Tara's eternal optimism was; you can see why they are twins from reading to her response:
One thing that amazed people was how worried Tara was about everyone else. As she was faced with impossible decisions and weighing treatment options, she decided to start this foundation because she never wanted someone else to be faced with these decisions. She knew the money she raised likely would not fund research that would find her cure, but that didn't matter. She wanted to change the odds for the next person in her shoes.
It is NOT easy carrying on a legacy, especially if it is a constant reminder of a loved one who was taken well before her time. I asked how they have coped with their loss, and why they chose to dive into fundraising for melanoma, knowing it will always be a difficult reminder of Tara:
I am not sure we have or ever will [shift focus from missing Tara to her foundation]. We carry on the foundation, her legacy, at least in part, because we miss her. We will always miss her, but we can help more people if we funnel those emotions into keeping her legacy alive, particularly for those families that find themselves in similar situations to ours. Her legacy wasn't just how to handle cancer with grace, it was how to support friends and family that are going through this with you. Tara truly believed that melanoma research was getting close to finding a cure, and she was so passionate about wanting to be part of what help gets it there. The foundation helps us still feel close to her by continuing her mission.
Last year's event produced an amazing $334,000 in funds that went to Penn Medicine's Abramson Cancer Center. Dr. Lynn Schuchter, who was Tara's doctor and became a friend to the entire Miller family, detailed the two initiatives being explored with those donations:
Engineered T-cell therapy, being led by Dr. Carl June, one of the foremost experts in the world on CAR T-cell therapy. A patient's T-cells are removed, genetically modified to recognize specific types of cancer cells, and then reinserted into the patient. Dr. June has been successful with this treatment in blood cancers, and is working with Dr. Schuchter to pioneer the approach in melanoma. A Phase I melanoma clinical trial is hopeful by the end of 2015.
Following up the preliminary success of the "RadVax" trial, where radiation and ipilimumab (Yervoy) were found to have better results when combined. Adding a third treatment, PD-1 (T.J. note: you may have heard me mention PD-1 on an occasion or two in this blog…) – could elicit an optimal response in more patients.
Dr. Schuchter pointed out these are considered "out of the box" approaches that have a difficult time getting funding from traditional sources. My first trial was in the same realm of the work being done by Dr. June, although my T-cells were not engineered.
In the words of the Millers: It's hard dealing with the reality that Tara is gone. As we look for ways and wonder how we can move on without her, we can almost hear her saying, "Make The Best Of It." This will be our first summer without Tara. We want to keep her spirit and legacy alive by kicking off the season exactly as Tara would have wanted it — with a fun-filled cocktail party to raise money in the race to find effective treatments and ultimately a cure for melanoma. When looking at dates for this year's event, we loved the idea of July 2nd, kicking off summer at the shore on Tara's favorite weekend. Our hope is that as summer progresses, this will also serve as a reminder that melanoma is a common and deadly form of cancer.
Anyone headed to the Shore for the Fourth, start the trip right and get to the Tropicana on Thursday night, July 2. Information on purchasing tickets can be found on the Tara Miller Melanoma Foundation website. There isn't a better way to make the best of a holiday weekend.
T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »