Fulfillment of a mother’s promise helps hundreds of adolescents and young adults impacted by cancer
By John Addyman
“It was just three nights before Melissa died at home, with us,” her mom, Lauren Spiker remembered. “She was 19.”
“She and I were talking late that night and I told her how proud I was of the way she had lived her life. I thanked her for everything I had learned from her…she was a pretty cool kid.
“Then she issued me a challenge — ‘If you’ve learned anything from me through all of this, do something with it, something to make a difference, to make things better.’”
Melissa was a synchronized swimmer who graduated fourth in her class at Rush-Henrietta. She was diagnosed at 17 with leukemia and began two years of treatment. She spent part of the spring semester at the University of Pennsylvania with an IV stand as her roommate, one of her parents bunking nearby at Ronald McDonald House. She wanted to be a nurse but never got the chance.
That was 25 years ago.
Spiker, now 74, has since created what was first known as Melissa’s Living Legacy, now 13Thirty Cancer Connect, a free program for adolescents and young adults, from age 13 to 39, who have cancer and have found themselves in a no-man’s land of holistic services.
From the first meetings at her kitchen table, she’s drawn people together to address the unique circumstance and needs of those AYAs — adolescents and young adults. She’s made a nurturing space for these kids here in Rochester and in Syracuse.
Picture a scenario where a 17-year-old cancer patient goes to a brightly lit and decorated children’s hospital for chemotherapy infusion. There is all manner of comforts and support provided. Some kids look just like her.
That same patient, a year later at age 18, now sits alongside a 65-year-old cancer victim in an infusion room and she looks a lot different than the people around her.
An AYA with cancer has much different treatment and life-sustaining needs than an average 65-year-old adult or a child with cancer.
Spiker explains the problem from first-hand experience with Melissa.
“Aside from having a life-threatening illness like cancer, one of the most debilitating things for kids in this age group is a sense of isolation. Their friends just can’t understand and how could they? Melissa’s friends all left for college. Friends tried to be helpful in the beginning, but as things progressed it was tough and their lives go on,” she said. “After Melissa died, I tried to figure out what the heck could I do?
“One of the things I learned from her was how important it was to stay connected, not only with other people, but with the things that were meaningful and gave her life purpose. So, when I started Melissa’s Living Legacy, it was with the hopes of helping other kids like her at least having the opportunity for the kind of life-affirming experiences. One of those was having friends.
“Everything started by my just bringing other teenagers together… at my house. We literally started around my dining room table. I saw the magic that happened when teenagers like Melissa met other kids who understood. Since that grassroots beginning, everything we’ve done has been built around a peer-support framework.”
13Thirty is located in the Al Sigl community of agencies on Elmwood Avenue in Rochester. The offices are a brightly colored dazzle of sofas and chairs and tables and photos of kids who made this a safe and hopeful place for years.
In essence, 13Thirty sees about 125 AYAs a year and provides nurture for kids whose spirits are taking a hit, values each kid’s worth and needs, provides resources these kids need, creates a homelike environment that kids cherish as being physically and emotionally safe and does it all without cost to the kids.
Spiker’s efforts, with a tiny staff, have received international acclaim and partnerships, including the development of a fundamental study involving the University of Rochester Medical Center and Rochester Regional Health to gain more insight into the specific needs AYAs and what efforts are most likely to produce change. She has partnered with physician Archie Bleyer, author of the textbook “Cancer in Adolescents and Young Adults,” in developing a website for teens with cancer. She also joined the international Children’s Oncology Group.
“We were one of the first community-based organizations to develop programs for AYAs. For seven years we were known internationally more than in our own back yard,” she said.
But the work goes on. Statistics show that survival rates for pediatric and adult cases continues to improve, but the opposite is happening in the AYA group.
Here’s part of the problem, Spiker said: “Kids ignore those early signs of cancer.”
Michaela Deeg is a “graduate” of 13Thirty. She was diagnosed when she was 15 and proves Spiker’s point.
“I had an itching on my legs. For six months I went to a dermatologist and they thought it could be anything except cancer. Then I felt a little welt on my collarbone. I sort of assumed the two were separate; Oh great! Here’s another thing,” Deeg said. “Then about two weeks later, my whole neck was filled with welts. That’s when my primary care doctor referred me to an oncologist. I had Hodgins Lymphoma.”
She found 13Thirty and got comfortable right away.
“It’s having a space where you can connect with people your age who truly understand. The biggest thing with this age group, you’re at such a pivotal point in so many aspects of your teen—adult life that are now mixed with your cancer diagnosis. That makes things overwhelming to deal with,” Spiker said. “So, when you can connect with people your age who know about the teen—adult issues and the cancer struggles, it makes it easier when you know you have a community to get advice and support from one another.”
After graduating from college and living abroad, Deeg is now the program manager at 13Thirty Cancer Connect, which is a nonprofit, existing through donations and grants.