A new clinic brings families from across the nation to St. Jude to increase our knowledge about this aggressive type of skin cancer.
Stephanie Mainer recalls with vivid clarity the day she received the phone call that changed her life.
“The sample we sent to the lab came back as cancer,” the doctor told her. “But 3-year-olds don’t get melanoma. So we’re going to send it to a different lab.”
That’s when mother’s intuition kicked in. Stephanie knew something was terribly wrong with Isaiah.
Originally, she and her husband had asked the doctor to remove a pinkish-red bump from the toddler’s right cheek.
“Honestly, we wanted it removed for cosmetic reasons,” she admits. “Skin cancer wasn’t even on our radar.”
A second report confirmed the diagnosis of melanoma, an aggressive type of skin cancer that affects only 400 children in the U.S. each year. Isaiah had two surgeries and received interferon therapy at a hospital in Texas. Although his treatment is now complete, his parents still have questions: “How often should he receive follow-up scans? Should we do blood work? Does he need to see an oncologist and a dermatologist?” And most importantly, “Will the cancer return?”
Answers for Isaiah
When the Mainers learned that St. Jude Children’s Research Hospital was creating a Pediatric and Adolescent Melanoma Referral Clinic for children treated at other institutions, they jumped at the chance.
“Our new clinic offers a second opinion or guidance into the management of these very complex cases,” explains Alberto Pappo, MD, director of the St. Jude Solid Tumor Division. “It’s open to children with melanoma throughout the United States. All a physician has to do is make a referral. Families and their physicians may have questions about diagnosis, pathology, therapy or follow-up. We’re providing this as a free service for them.”
Isaiah and four other children from Idaho, Minnesota, Georgia and Indiana were referred by their local physicians to attend the April 2016 clinic. The two-day event included medical exams by leading melanoma specialists, educational seminars, individual consultations with a panel of experts, and the opportunity to meet other families battling this rare cancer.
A leader in genomic research, St. Jude also invited participants to donate tissue samples to the hospital’s Tissue Bank for use in future melanoma research. All five families agreed to take part in that project.
St. Jude provides travel, housing and meals for participants in the melanoma clinics, which will be held twice a year. Afterward, families and their referring physicians receive written reports that include treatment recommendations.
We cannot rest until every child with cancer can be cured.
As an important component of the St. Jude Strategic Plan, the melanoma clinic aims to advance cures by increasing our knowledge about this rare childhood cancer and sharing that information with patients and their physicians. St. Jude faculty and staff are currently making plans to create similar referral clinics for other rare diseases, such as thyroid cancer and adrenocortical carcinoma.
“Our goal is to accelerate progress for some of the most aggressive and least-understood childhood cancers,” explains James R. Downing, MD, St. Jude president and chief executive officer. “To do that, we must focus our efforts on diseases where progress has been limited.
“We cannot rest until every child with cancer can be cured.”
A room full of experts
Amanda Hosier, mom of 11-month-old Nora, traveled from Indiana to attend the clinic. While all childhood melanoma is uncommon, Nora’s is extremely rare. She was born with a small, blue lesion on the crown of her head. Doctors originally assumed the spot was caused by trauma from labor. But the lesion was actually melanoma, which had already spread to Nora’s liver, lymph nodes, lungs and leg. Amanda and Nora attended the clinic to see if their current treatment plan is on the right course.
After an exam by clinic staff, Nora and her mom met with a multidisciplinary panel of experts that includes physicians from the University of Tennessee Health Science Center’s College of Medicine and Le Bonheur Children’s Hospital.
“All we ever hear about Nora is, ‘She’s one in a million.’ There’s no run-of-the-mill treatment plan for her,” Amanda says. “So the panel discussion really exceeded my expectations. I’ve never before had the chance to have a radiologist, a surgeon, an oncologist, a pathologist, an RN and a dermatologist all in the same room together so that I could ask questions about my child.
“They answered all the questions I had, and I’m in the process of following up on some of the things we talked about.”
Knowledge is power
Isaiah’s mother says the melanoma clinic helped put her mind at ease.
“After Isaiah’s treatment, we’ve been following up with our local oncologist, but not a melanoma specialist,” Stephanie says. “At St. Jude, we could fill in unanswered questions that we still had. The chance of recurrence was my biggest fear. Dr. Pappo cited some facts and figures that were really comforting. The chances of it coming back are very, very slim. When I asked him about long-term effects of interferon on Isaiah’s teeth, Dr. Pappo researched our concern and discussed the results with us the next day. Everyone at St. Jude took their time and answered every question we had.”
Stephanie also had the opportunity to connect with other families affected by melanoma and to attend an educational seminar. As the mom of an avid T-ball player, she was thrilled to learn one particular tip: “There’s a product you can add to your laundry to make clothing sun resistant,” she says. “For my little baseball player kid, that’s great to know.”
Six-year-old Isaiah excels in school, where he made straight A’s in kindergarten. Talkative and energetic, he is quick to let St. Jude staff know that he plays first base and rover for his T-ball team, which won the T-ball World Series last year. He’s also vocal about the attributes of reducing sun exposure by wearing hats and sunscreen.
“All because of cancer!” he warns, when referring to the small scar on his face. “Bad cancer!”
The next St. Jude Pediatric and Adolescent Melanoma Referral Clinic will take place November 10-11, 2016. For more information, visit stjude.org/melanoma-consult-clinic.
From Promise, Summer 2016