Pediatric Melanoma Awareness: Millie’s Story

For our Pediatric Melanoma Awareness campaign we share Millie’s story who was diagnosed with spitzoid melanoma before she turned five: 

The words “your child has cancer” are not something you ever expect as parents, let alone skin cancer in a 4.5-year-old. Our sweet, sassy, beautiful Millie was diagnosed in January 2021 with a rare form of pediatric skin cancer called spitzoid melanoma. A mole that had been on her cheek for almost a year started changing and growing so we had it excised and biopsied out of precaution. Never in a million years did I think it would be cancerous. She then had a wide local excision to get all of the tumor, a PET scan and sentinel lymph node biopsy. In true Millie style, she went off like a princess and has recovered amazingly. Never complaining about pain, she bounced back like nothing happened; kids are so resilient that way. However, one of the lymph nodes was positive, something this type of cancer normally does, but doesn’t metastasize beyond that, especially in young children. Specialists at St. Jude reviewed Millie’s case in conjunction with our oncologist and after finding a unique genetic profile of the tumor, the decision was made to just observe her closely with ultrasound and dermatology checks. 

We felt really thankful that most kids do well and it seemed to not worry anyone. But shortly after a clear ultrasound in May, two dark pigmented nodules appeared along her scar. With another trip to the dermatologist, an extra ultrasound and a sedated MRI, what initially looked like fluid on imaging was actually solid. She then underwent another wide and deep excision and biopsy which confirmed malignant melanoma cells again but margins were not clear. A PET scan thankfully ruled out distant metastasis again. She then went through a 4th surgery on her cheek to get all the cancer cells. We got negative margins but they were slim because of how deep it was into her muscle. A more aggressive surgery would be very disfiguring. Because it was so aggressive and quick to come back, she will also be on a targeted therapy called larotrectinib to break up the NTRK gene fusion causing tumor formation. We are lucky it’s well tolerated in kids; she can go to school and be as normal as possible. There’s no standard of care, not a lot of data, no tried therapy to guarantee it won’t come back again. Yet we try, wait, pray and hope.  

I struggle with why this has happened to her. As a parent you question if you’ve done enough or what you did or didn’t do to cause it. Some days the fear takes over. But Millie has already shown us what bravery is and how to keep going regardless. She was truly sent to us capable to handle this and at 5 years old, is the bravest person I know. Kids have a way of pulling you out and forcing you to keep going because they don’t stop. They don’t know any different. We are so lucky and thankful she takes every appointment, COVID test, IV, scan and surgery like a true champion with no complaints. The hardest part is telling her she can’t do something – she is a force of nature.  

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