Under the microscope, cells from three-year-old Sienna Cook’s arm looked suspiciously like “adult melanoma”, but the dermatologist ruled it out as impossible.
Her worried mother Shawnee, 30, from Perth, was told it was probably just a benign lump and would need to be removed. Doctors added that while he certainly could “become cancerous,” he “wasn’t cancerous yet,” so there was no rush.
They were wrong. Now Sienna, a cheerful little girl, is halfway through a grueling series of cancer treatments after the life-threatening disease spread to her lymph nodes.
Although rare, most forms of melanoma in children cannot be prevented as they are genetic and caused by a mutation. Doctors are learning more about these tumors, which are often called “spitzoid melanomas.”
The most common symptom is a sudden “small injury.”
Speaking to FEMAIL, Shawnee revealed the family’s frustrating experiences with medical professionals who, until they arrived at the children’s hospital, seemed to ignore Sienna and her little red sore every step of the way.
Under the microscope, cells from three-year-old Sienna Cook’s arm looked suspiciously like “adult melanoma”, but the dermatologist ruled it out as impossible.
At first, the lump, which appeared in June, looked like a small bite, but months later it began to look “infected.”
‘I’m still in disbelief. I’m scared and angry. I trusted the professionals: they had your life in their hands and they were wrong,” he said.
The melanoma, which is a genetic variant and is not caused by the sun, appeared on the two-year-old boy’s arm in June 2023.
It wasn’t brown, it didn’t have rough edges or dark spots, and it didn’t grow quickly like typical melanomas do.
The family was on vacation in Bali and it looked like a normal mosquito bite.
“I don’t have photos of it back then because it didn’t look different enough to even think about taking a photo,” he said.
The small round lump seemed to never go away. Then, at the end of August, he began noticeably bothering Sienna.
It was itchy, it hurt when he played with his five-year-old brother and it started to scab and bleed.
So, like all parents do when they notice something is wrong with their babies, Shawnee decided to take her little girl to the family doctor to get checked out.
He assumed it was some type of staph infection and gave him a cream to try. Then, a week later, she gave him another one. A week later she tried some oral medication. Nothing worked.
Sienna actually had melanoma: she had it removed and underwent a second operation to remove the lymph nodes where the cancer had spread.
Shawnee was losing faith and it completely disappeared when the doctor took a photo and started “Googling” it.
“I told him, ‘I don’t want to disrespect you, but I feel like you don’t know what it is,'” he said.
She then asked to be referred to a dermatologist. It was already the end of October.
The skin specialist offered her a cream, but she rejected it and opted to return to have the sore scraped.
“A few weeks went by and I got a call saying that under the microscope it looked like an adult melanoma, but that wasn’t correct, given its age,” he said.
“They did more tests and told me it was a benign lump and that I should remove it because it could become cancerous.”
That’s when she started to worry, so she called the surgeon they had recommended and was told by his staff that the results were not urgent. They would see Sienna after Christmas.
Shawnee is pictured here with her kids on that Bali vacation: Her five-year-old son Byron has had a suspicious mole removed since his sister was diagnosed, although the results haven’t come back.
He came in when they reopened on January 15.
“At the time I was stressed because they said it could become cancerous, but everyone told me not to worry,” she recalled.
The mother became even more stressed after receiving calls from the dermatologist to see if she had cut it and then urging her to do it quickly.
“I thought, ‘Wait, you said it wasn’t urgent, why are you still calling me?'” she said.
The surgeon said the results looked benign and said he could cut it for $6,000 or the family could wait two weeks and the hospital would cut it for free.
“We decided that everyone had been telling 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,” he said.
It then took the office more than a week to understand the referral, despite multiple calls from Shawnee and the dermatologist.
On February 20, they arrived for their first consultation at the hospital.
The family, which includes Brayden’s eight-year-old son from a previous relationship, has been very stressed for weeks.
Doctors here were much more alarmed by the results that confirmed active “adult melanoma” cells.
“He looked at his arm, felt his lymph nodes, looked at the records and then asked us to give him a minute,” she said.
“He left the room and returned 30 minutes later to inform me that they had just had a cancellation and could operate the next day.”
Sienna’s father, Brayden, 33, asked the doctor to be honest with them. Shawnee remembers words like “oncologist” and the doctor revealing that he didn’t feel comfortable ruling out melanoma because of his age.
The lump was removed and medical opinion apparently divided.
Teams of doctors were consulted, including specialists from Perth. They concluded that it had to be treated as if it were melanoma.
A PET scan showed a hot spot in his lymph nodes.
The terrified boy, who had begun to develop a fear of the hospital, was then placed in a straitjacket-like brace in an imaging machine so doctors could determine which lymph nodes needed to be removed and examined.
“He was in the scanner for three hours, it was the most traumatic day, the camera was very close to his face but he couldn’t move and he was screaming at us for help,” he recalled. “She said ‘save me mom’ and I had to sit there.”
The test failed, so they took another approach and discovered that the lymph nodes in the arm needed to be removed.
“They had to get them all out; they don’t normally do that,” he said.
Meanwhile, Sienna’s older 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.
Doctors have removed the lump and do not want to take any risks, since the disease is hereditary.
Sienna’s dating continues and the ‘hot princess’ has developed attachment anxiety and cries when she can’t see her mother.
“She’s changed a lot: we got married in November and she stayed with grandma and didn’t bat an eyelid,” he said.
“I left her there when my son had his procedure and she cried.”
Sienna has had some surgeries to remove the melanoma, augment the edges, fix drains and remove lymph nodes and will soon begin immunotherapy.
This could cause complications in the future, including hepatitis, type 1 diabetes, thyroid problems, and heart disease or failure.
And given the nature of the disease, there is no way 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 a Go finance me to help support the Sienna family. Shawnee stopped working, although Brayden continues to run his air conditioning company.
Shawnee wants parents to be on the lookout for sores that won’t heal and to push for answers if they are ignored.
At one point the sore seemed to have an ulcer inside.
Shawnee wishes she knew about childhood melanoma and understood more about what it looks like, but she admits that even the doctors she’s met since then are fascinated.
‘The whole family has had their skin examined since he was diagnosed. “The doctor who examined my husband and cut something out asked to see photos and the pathology report and admitted that he wouldn’t have thought it was melanoma,” she said.
She says that if the disease was contracted when you first went to the doctor, or even when abnormal cells were first noticed, it may not have spread.
The family has also thanked Australian Skin Foundation for your support since Sienna was diagnosed.
‘We are at the end of the first part of your journey. We still have a long way to go,” Shawnee said.