Holly Carroll and I were first introduced at a fundraiser, where ladies-who-lunch were bidding on a silent auction and streaming into an expansive, 900-seat dining room shimmering with china and crystal.
A seat had opened up at a friend’s table — her $1,000 table — garnering me a last minute invitation. I vaguely understood myself to be at a fundraising event for cancer treatment, and that there would be a children’s fashion show.
My concerns that morning were whether my dress was fancy enough and that my purse matched my shoes. Then, a mutual friend introduced me to Holly, a beautiful woman in a cocktail dress in a sea of beautiful women in cocktail dresses.
When we took our seats, my friend told me that Holly’s son, Andrew, 11 years old, had just completed treatment for skin cancer. He would be walking in the fashion show along with other children who had survived, or who currently had, cancer.
It was then that I realized that for many people, this formal event was actually a matter of life and death.
Andrew’s cancer journey started with a seemingly innocuous mole on his back.
The mole was symmetrical with smooth borders and even coloring. It did not immediately raise the alarm bells indicated by ABC’s of skin cancer detection:
- A is for asymmetry
- B is for border
- C is for color
- D is for diameter
- E is for evolving
But the mole was growing. Holly told Andrew’s dermatologist, “I don’t even notice Andrew growing, yet I notice this mole growing.” Given the mole’s seemingly benign appearance, the doctor was initially dismissive. It looked like an atypical spitz nevus, an uncommon but benign mole typically seen in children.
Holly persisted, showing the doctor a cell phone photo she had taken of the mole a year and a half earlier. It had since doubled in size. The doctor still wasn’t concerned, but he excised the mole that day and sent it for testing. Holly waited and waited.
News finally arrived, and it was inconclusive and worrying. The labs in Arizona had rejected Andrew’s pathology. They did not have the technology to diagnosis it accurately. The sample was then being sent to the University of California, San Francisco.
On June 6, 2014, the results were in. Andrew was diagnosed with spitzoid melanoma, a rare and difficult-to-diagnose skin cancer. Childhood melanoma (diagnosed in children ages 0-17) is so rare, it has comprised only 1.3 percent of melanoma cases in the United States over the last two decades. 2 And the consequence of it being so rare is the lack of data on exactly how to diagnose it.
According to an article by David A. Lee, M.D., there are so few cases that there is simply no objective criteria for differentiating spitz nevus from malignant spitzoid melanoma.
But the research that does exist weighed in Andrew’s favor. Because he was under 11 years old, his prognosis was good.
The five-year survival rate for a child 0-10 years old with spitzoid melanoma is 88 percent. For children 11-17 years of age, it is only 49 percent. 2
First observed clinically in 1910, spitzoid melanoma does not conform to the ABCDs of melanoma diagnosis. This makes it extremely difficult to diagnose.
According to the National Cancer Institute, over 10,000 cancers are expected to be diagnosed in children 0-14 in 2015. Mortality rates for some pediatric cancers have decreased by 50 percent in the last 35 years, but incidents of pediatric melanoma are rising 2 percent every year.
Read more here.
Andrew’s pathology report indicated that the next step as “urgent.” Andrew needed to have a wide excision of the mole to get clean margins.
“That’s when our frustrations began,” Holly shared, “because apparently ‘urgent’ to us, is not the same as ‘urgent’ to the schedulers at doctors’ offices.”
For Holly and her husband, Garren, the two weeks following Andrew’s diagnosis — the uncertainty, powerlessness and lack of knowledge — was much worse than Andrew’s actual treatment and recovery.
Andrew in the hospital
Holly spoke about how little she could find about spitzoid melanoma on the Internet. “At the time, we could find eight other cases in the United States. Some of them were on Caring Bridge, not the most positive cases, kids who had twelve surgeries.”
The family was assigned no case worker, there was no built-in social support, no rulebook for how to proceed. But if Andrew had cancer, he had the mother to handle it.
Upon hearing the diagnosis, Holly said, “I started tearing up in the doctors office, of course, but I went immediately into plan/fight mode ... what do we do next?”
A member of the faculty at Northern Arizona University with a doctorate in Physical Therapy, Holly went into motion, making calls and reaching out for support.
As a physical therapist, Holly’s life’s work is to move the sick and injured forward towards wellness. This was her mission from the moment of Andrew’s diagnosis: What must they do to get him well?
“One thing I recommend to people is to keep a notebook — not a journal, not my feelings for the day — but a place to keep phone numbers, doctors’ names, recommendations, places to eat, every date and doctor appointment. If I had middle-of-the-night questions, I would put it them the notebook.”
Holly had the notebook with her at our interview. Its bright pink and white Lilly Pulitzer cover belied the gravity of what it contained.
It was standard medical practice to excise the mole, but as far as what to do next, there was no protocol. Andrew’s parents were told his cancer treatment was urgent, but doctors they called would schedule for a consultation a month out.
Those weeks since the diagnosis, before a treatment plan existed, the question “What does urgent mean?” would keep Holly up at night.
Holly put all in the notebook: doctors here, in Tucson, in Minnesota, names and numbers of members of Panda, the fundraising arm of the Steele Children’s Research Center.
Holly’s mother, a member of the Friends of the Arizona Cancer Center, started reaching out to her connections. Garren called university medical centers throughout the country.
The Purple Society — an organization whose mission is to help families who are struggling after a diagnosis and don’t know where to turn — also began to help search.
That deceptively cheerful notebook filled up with the names and numbers of oncologists from around the world.
Finally, in frustration, Holly’s husband pulled out the pathology paperwork — the only concrete link they had to this disease — and found the name of the doctor at the University of California, San Francisco who had made the diagnosis.
Garren called him directly. Mercifully, this pathologist, Dr. Philip E. LeBoit, called back within the hour.
Dr. LeBoit had information that changed their lives. He was aware of current research on pediatric melanoma by Dr. Alberto Pappo at St. Jude Children’s Research Hospital.
Garren called Dr. Pappo, who also called back within the hour.
Admission to St. Jude is selective, based on the eligibility to enroll in an open St. Jude Children's Research Hospital clinical research protocol. You need a referral from a doctor for admittance.
Fortuitously, Dr. Pappo was currently doing research specifically on spitzoid melanoma.
Within three days, referral in hand, Andrew and his parents, Holly and Garren, and little sister, Hannah, were on a plane to Memphis, Tennessee. Andrew had been admitted to St. Jude.
The Carroll family on their way to St. Jude's in Memphis for the first time
The hardest part of Andrew’s story — the days spent immobilized in the face of a disease so rare — were over. Holly and her husband had found the path forward by way of Dr. Pappo, a man Holly came to refer to as “the most wonderful man on the planet.”
St. Jude Children's Research Hospital is the only pediatric research hospital where patients never pay for treatment not covered by insurance. No one is refused for the inability to pay.
To further reduce the financial strain on families already suffering, the patient and one parent are provided free airfare to and from the hospital, and the entire family is given free housing while the child is in treatment. Holly and Garren never received a bill.
Andrew, as you might be wondering, was doing just fine. Strong-willed 10-year-old boys who love baseball will chafe at spending their days in doctors’ offices, and have trouble conceptualizing just how sick they are.
Andrew, symptom-free, was flummoxed by his mother’s tears. “Mom,” Andrew told Holly, “I’m not going to die from a spot on my back!”
Holly’s response didn’t sugarcoat the truth, but ensconced it in her characteristic optimism backed up by action. “That’s why we’re trying to find the best doctors in the world, and make sure it doesn’t spread. We’ve got to take care of this.”
Andrew’s worst pain was baseball-related. His team had won State for the last three years, and his diagnosis occurred right before the state tournament, meaning he would have to miss it. When his team won State without him, Andrew still expected to fly to Memphis, have the tumor removed and meet his team at regionals in California.
But those hopes were dashed when cancer was found in Andrew’s lymph nodes, requiring a second surgery.
A two-week stay in Memphis turned into six weeks. However, a promise made to the Carrolls when they arrived at St. Jude came true: Your time at St. Jude will be a good family experience.
Andrew’s six weeks of cancer treatment are punctuated with memories of visits from family and friends, museum trips, Graceland, restaurants, and countless other fun activities — all free to St. Jude patients and their families.
Meanwhile, back at home, a groundswell of support grew up around Andrew and his family. A friend of Holly’s created a private Facebook page called “Bulldog’s Battle,” referencing Andrew’s tenacious personality. Messages of encouragement flooded the page.
Andrew’s baseball team created T-shirts with Andrew on the front, and his team number, “7,” on the back. Photos started appearing on the Facebook page of the team wearing their shirts as a show of support, at weekday Mass before school, and during the last game of the season.
Andrew's baseball team wearing the Bulldog's Battle t-shirt to Mass
Everyone at St. Jude saw every member of the Carroll family with a giant “7” on their backs and inquired about the meaning, and even asked for their own shirts.
Biblically, seven represents “completeness and perfection, physical and spiritual, with regard to God’s creation of all things.” Everyone at St. Jude shares the same mission: healing God’s creation — children — and restoring them to the completeness and perfection of health.
A bold message went up one day on the Bulldog’s Battle page:
“There’s a glory up ahead and it’s going to far outweigh all our present pain.” -Charles Morris.
Friends of Holly’s wrote letters to Andrew. Even Terry Ryan, the general manager of the Minnesota Twins — Andrew and his dad’s favorite team — wrote to him.
The day I met Holly at the Panda fundraiser, a healthy, hearty Andrew, finished with treatment, modeled in the children’s fashion show. One million dollars was raised for pediatric cancer that day. It was so much more than a fancy lunch.
Andrew is a normal little boy, back to playing baseball in all his glory. In medical terms, he has “no evidence of disease.” Holly prefers the term “cancer-free.”
Andrew’s continuing care requires that he return to St. Jude every three months for scans the first year, every four months the second, every six months the third, and every year thereafter for the rest of his life. It’s a regimen Andrew’s father, Garren, refers to as “scanxiety.”
Holly and Andrew in front of St. Jude's statue
Because Andrew was treated at St. Jude, research gained from his case will help children with spitzoid melanoma in the future. Holly’s recent post on the Bulldog’s Battle page is a testament to the whole family’s perseverance: “An inch taller, 5 pounds slimmer, and still CANCER FREE! Not bad for just 3 months! Another check up done!”
Never underestimate a beautiful woman in a cocktail dress.
Sources:
Spitzoid Melanoma. NIH.gov. Retrieved May 15, 2015. http://www.ncbi.nlm.nih.gov/pubmed/19880042
A Case of Spitzoid Melanoma with Lymph Node Metastasis in a Child. NIH.gov. Retrieved May 15, 2015. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3314862
The Spitzoid lesion: rethinking Spitz tumors, atypical variants, ‘Spitzoid melanoma’ and risk assessment. nature.com. Retrieved May 8, 2015. http://www.nature.com/modpathol/journal/v19/n2s/full/3800519a.html
Spitz Naevus. dermnetnz.com. Retrieved May 10, 2015. http://www.dermnetnz.org/lesions/spitz-naevus.html
Spitzoid Melanoma. dermnetnz.com. Retrieved May 10, 2015. http://www.dermnetnz.org/lesions/spitzoid-melanoma.html
Are all melanomas the same? wiley.com. Retrieved May 10, 2015. http://onlinelibrary.wiley.com/doi/10.1002/cncr.21686/full
Melanoma Rates Rising in U.S. Children. WebMd.com. Retrieved May 13, 2015. http://www.webmd.com/melanoma-skin-cancer/news/20130403/melanoma-rates-rising-in-us-children
St. Jude Overview. StJude.org. Retrieved May 13, 2015. https://www.stjude.org/media-resources/media-tools/facts.html
A Snapshot of Pediatric Cancers. cancer.gov. Retrieved May 14, 2015. http://www.cancer.gov/research/progress/snapshots/pediatric
Reviewed June 23, 2015
by Michele Blacksberg RN
Edited by Jody Smith