Debra Melikian is a mother on a mission
So much to do. So little time. What parent or student hasn’t thought that?
Neither those thoughts nor a rare form of cancer nor any other obstacle is likely to stop Debra Melikian, who is using her Brandman degree in the hope of saving her son’s life.
The 2016 applied studies graduate from the Irvine campus is doing everything she can to raise awareness about gastrointestinal stromal tumors (GIST), a form of soft tissue cancer affecting the stomach and intestines. It’s her Brandman education, she says, that has given her the critical thinking tools and communication skills needed to build that awareness and raise funds for ongoing GIST research at the University of California, San Diego.
It was while Melikian was nearing the completion of her bachelor’s degree courses in 2014 that her son complained about being exhausted. He eventually went to an emergency room in San Francisco, where he was in college and working part time. First diagnosed with anemia, he and his family learned about a month later that he had GIST, and he underwent his first operation to remove the tumor. (She prefers not to use her son’s name or have his picture shown out of respect for his privacy. “He doesn’t want cancer to define him.”)
Looking for answers
GIST arises from nerve cells with about 4,000 to 6,000 malignant GIST cases diagnosed each year in the United States. To educate herself, Melikian turned to the Life Raft Group, an international organization dedicated to providing education, advocacy and support to patients with GIST and their families. In November 2015, she attended the organization's first GIST Day of Learning in Orange County.
“I remember this day. This was the day that changed the course of my son’s care and our lives forever. Neither of us knew at the time how significant this meeting would be in the weeks and months to follow,” says Melikian. GIST Day of Learning Orange County introduced to her Jason Sicklick, M.D., who leads the research on the rarer form of the disease afflicting Melikian’s son at UC San Diego.
Not long after that meeting, a scan showed more tumors and Melikian’s son underwent a second operation in Los Angeles . “Not only did it come back with a vengeance but the surgeon in L.A. also couldn’t clear the cell margins, so disease was left behind.”
As tears well in her eyes at the retelling, Melikian says she remembers sitting at her son's hospital bedside, holding her son’s hand as he was trying to sleep. “I realized we were in so much trouble and I desperately needed to find him some more help. As a mother, you always want to make it everything better for your child – no matter how old your child is. At that moment, I couldn’t.”
That’s when she remembered Sicklick. She called him, left a message and by the end of the day he had gotten back to her with guidance and support, eventually taking her son on as a patient at the Moores Cancer Center at UC San Diego.
“It’s difficult to put into words what it’s like to see a loved one – my only child, the joy of my life – struggle and I mean struggle with all the things cancer brings. It’s a sea of scans, difficult medication, complicated operations, repeated lab tests,” recalls Melikian.
In August 2016, her son underwent a third operation, this time at UC San Diego with Sicklick in charge. “He removed over 50 GIST tumors in a nine-hour operation. He was heroic that day, and so was my son. Dr. Sicklick saved my son’s life, and I am forever grateful. Dr. Sicklick was successful that day, but we remain realistic. His disease will eventually reoccur and progress. Without more research and drug development, there will be few therapies to offer."
Ready to help
She is turning her gratitude into action by raising awareness and financial support for GIST research. GIST is not a well-known cancer, and there is limited funding for research. Sicklick's research is an example of personalized cancer care.
“I asked him (Sicklick), ‘How much does it cost to bring a drug to market? How much time does it take? I’m not a doctor. I’m a businesswoman. I’m a mother. I’m a mother on a mission. How can I help you get what you need, to find a cure for my son, and, of course, other patients as well?’ His answer was that it was about the research and funding for research. I said, ‘I can do that.’”
And with the kind of drive that brought her back to school to finish a degree started years earlier, Melikian now devotes herself to, literally, being “A Mother on a Mission to Raise Awareness and Support for GIST Cancer Research,” as her business card says.
“That’s where my Brandman education and career experience totally shaped the way I moved forward.”
Those who’ve come in contact with Melikian during her time at Brandman aren’t surprised.
“Debra struck me immediately as very driven and someone who craved learning,” says Jeff Compangano, whose organizational communication course Melikian points to as instrumental in helping her move her efforts to raise awareness to a new level.
Like so many others who have come in contact with her, Compangano has also been affected by her story and the doctor whose research she supports.
“I was playing devil’s advocate with the doctor, asking why should I give money to a disease that affects such a small fraction of people. His answer, and why I continue to support Debra, is that this is the one that we really think we can make significant progress in,” said Compangano.
Staying connected to students like Melikian, said Compangano, is part of the Brandman experience. “When you have someone like that, who wants to engage, you have a responsibility to continue to help them learn.”
Awareness in action
Since working with Sicklick, Melikian has organized Lighting the Path Forward For GIST Cancer Research, a fundraising dinner reception. She’s galvanized employees from the La Jolla Nordstrom to help prepare literature bags for a GIST Day of Learning in San Diego and had the honor presenting Sicklick with the Life Raft Group's Clinician of the Year Award. Her efforts earned her a nomination for Global Genes 2017 Rare Champion of Hope for patient advocacy. Global Genes is one of the leading rare disease patient advocacy group in the world.
Through it all, Melikian says she is learning as she goes along. “I remain hopeful and undeterred and focused.”
You can support her efforts to fund GIST Research. To donate, go to UC San Diego Foundation, Fund #3661 Gastrointestinal Stromal Tumors Research.
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