Under a microscope, the cells on three-year-old Sienna Cook’s arm looked suspiciously like an ‘adult melanoma’, but the dermatologist dismissed it as impossible.
Her concerned mother Shawnee, 30, from Perth, was told it was probably just a benign lump and needed to be removed. Doctors added that while it certainly “could turn into cancer,” it “wasn’t the case yet,” so there was no rush.
They were wrong. Now Sienna, a bubbly little toddler, is midway through a grueling series of cancer treatments after the potentially fatal disease spread to her lymph nodes.
Although rare, most forms of melanoma in children cannot be prevented because they are genetic and caused by a mutation. Doctors are learning more and more about these tumors, which are often called “spitzoid melanomas.”
The most common symptom is a sudden ‘small lesion’.
Speaking to FEMAIL, Shawnee revealed the family’s frustrating experiences with medical professionals who, until they ended up at Children’s Hospital, seemed to ignore Sienna and her small red sore every step of the way.
Under a microscope, the cells on three-year-old Sienna Cook’s arm looked suspiciously like ‘adult melanoma’ – but dermatologist dismissed it as impossible
At first the bump, which appeared in June, looked like a small bite, but months later it started to look ‘infected’
‘I’m still in disbelief. I’m scared and angry. “I trusted the professionals – they had her life in their hands and they were wrong,” she said.
The melanoma, a genetic variant and not caused by the sun, appeared on the then two-year-old’s arm in June 2023.
It was not brown, had no rough edges or dark spots, and did not grow as quickly as typical melanomas.
The family was on holiday in Bali and it looked like an average mosquito bite.
“I don’t have any pictures of it at the time because it didn’t look different enough to even think about taking a picture,” she said.
The little round bump never seemed to go away. Then, in late August, it started to noticeably irritate Sienna.
It itched, it hurt when she played with her five-year-old brother, and it started to crust and bleed.
So, as all parents do when they notice something is wrong with their babies, Shawnee decided to take her little girl to the doctor to have it checked out.
He assumed it was a staph infection and gave her a cream to try. A week later he gave her another. A week after that he tried some oral medications. Nothing worked.
Sienna actually had melanoma – it was cut out and she had a second surgery to remove the lymph nodes where the cancer had spread
Shawnee lost confidence and it completely disappeared when the doctor took a picture and started ‘Googling’.
“I said, ‘I mean no disrespect, but I feel like you don’t know what it is,’” she said.
She then asked for a referral to a dermatologist. It was now the end of October.
The skin specialist offered her a cream, but she turned it down and decided to go back to have the sore area scraped.
“A few weeks went by and I got a call saying that under the microscope it looked like an adult melanoma, but that didn’t make sense considering her age,” she said.
‘They did more tests and told me it was a benign lump and that I should have it cut out because it could become cancerous.’
Then she started to worry, so she called the surgeon who had been recommended and his staff said the results were not urgent. They were supposed to see Sienna after Christmas.
Shawnee is pictured here with her children during that holiday in Bali – her son Byron, five, has had a suspicious birthmark removed since his sister was diagnosed, although the results are not yet known
She went in when they reopened on January 15th.
“At the time I was stressed because they said it could turn into cancer, but everyone told me not to worry,” she recalls.
The mother became even more stressed after she got a call from the dermatologist to see if she had cut it out – and then urged her to do it quickly.
“I thought, ‘Wait a minute, you said it wasn’t urgent, why do you keep calling me?’” she said.
The surgeon said the results looked good and said he could cut it out for $6,000, or the family could wait two weeks and the hospital would cut it out for free.
“We decided that everyone had told us it was benign and it was only a two week wait and we didn’t have $6,000 on hand so we would wait,” she said.
It then took the practice more than a week to track down the referral, despite multiple phone calls from Shawnee and the dermatologist.
On February 20, they arrived at the hospital for their first consultation.
The family, which also includes eight-year-old Brayden from a previous relationship, has been under super stress for weeks
The doctors here were much more alarmed by the results confirming active ‘adult melanoma’ cells.
“He looked at her arm, felt her lymph nodes, looked at the data and then asked us to give him a minute,” she said.
“He left the room and came back 30 minutes later to let me know they had just had a cancellation and they could operate the next day.”
Sienna’s father Brayden, 33, asked the doctor to be honest with them. Shawnee remembers words like the oncologist throwing around and the doctor revealing he wasn’t comfortable ruling out melanoma because of her age.
The lump was excised and medical opinion was apparently divided.
Teams of doctors were consulted, including specialists in Perth. They concluded that it should be treated as a melanoma.
A PET scan showed a hot spot in her lymph nodes.
Then the terrified toddler, who began developing a fear of the hospital, was placed in a straitjacket-like brace in an imaging machine so doctors could determine which lymph nodes needed to be removed and tested.
“She was in the scan for three hours, it was the most traumatic day, the camera was so close to her face but she couldn’t move and she was screaming at us for help,” she recalls. “She said ‘save me mommy’ and I just had to sit there.”
The test failed, so they took a different approach and discovered that the lymph nodes in her arm needed to be removed.
“They had to take them all out, they don’t normally do that,” she said.
Meanwhile, Sienna’s big brother Byron had a mole appear out of nowhere.
‘We asked them at the hospital what to do. we didn’t want to go down the same path,” she said.
The doctors removed the lump and are not taking any chances as the disease is hereditary.
Sienna’s appointments continue and the ‘fiery princess’ has developed attachment anxiety and starts screaming when she can’t see her mother.
“She’s changed so much: we got married in November and she was staying with grandma and didn’t blink,” she said.
“I dropped her off there when my son was having his procedure and she was bawling.”
Sienna has had a few surgeries to cut out the melanoma, enlarge the borders, repair drains and remove lymph nodes and will soon start immunotherapy.
This can cause complications over time, including hepatitis, type 1 diabetes, thyroid problems and heart disease/failure.
And given the nature of the disease, it’s impossible to know if they “have it all.”
“It could be traveling, which means it could show up somewhere else,” Shawnee said.
Shawnee’s sister started one Go finance me to help support the Sienna family. Shawnee has stopped working, although Brayden continues to run his air conditioning business.
Shawnee wants parents to be alert to sores that don’t heal and push for answers if they are ignored
At one point it looked like there was an ulcer in it
Shawnee wishes she had known about childhood melanoma and understood more about its appearance, but admits that even doctors she has met since are fascinated.
‘Since diagnosis, the whole family has had their skin checked. “The doctor who checked my husband and cut something out asked for pictures and the pathology report and admitted he didn’t think it was melanoma,” she said.
She says if the disease was noticed when she first went to the doctor — or even when abnormal cells were first noticed — the disease may not have spread.
The family also thanked the Australian skin foundation for their support since Sienna was diagnosed.
‘We are at the end of the first part of her journey. We still have a long way to go,” Shawnee said.
