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Photo by: Instagram/@melaniekham

A popular YouTuber known for crafting and DIY videos has died following a rare cancer diagnosis. Melanie Ham was diagnosed with epithelioid angiomyolipoma less than two years ago. Her husband, Robert, announced her death on her Instagram on Jan. 12. She was 36.

Ham had over 800,0000 subscribers on her YouTube channel, which racked up millions of views. She announced her diagnosis in an August 2020 blog post, saying that her cancer is “very, very rare” and “behaves differently than a typical cancer, which is why it was so unpredictable.” 

“My family, our doctors, our nurses and especially Melanie fought until the end and did all we could do to avoid today, but that is not our path,” said Robert. “Let me reassure all those rooting for us, Melanie fought like a warrior queen.”

According to Dr. Damon Reed, an oncologist in Moffitt Cancer Center’s Department of Individualized Cancer Management, epithelioid angiomyolipoma is a type of sarcoma. It is so rare that even major cancer centers like Moffitt may not treat more than two cases per year.

“Epithelioid angiomyolipoma is too rare to even conduct clinical trials,” said Reed. “Each patient would get an individualized plan based on other cases and their particular targets.”

Headshot of Dr. Damon Reed, medical oncologist at Moffitt Cancer Center

Dr. Damon Reed, Medical Oncologist

Reed said the most common symptoms are a mass in the abdomen or blood in urine. Those symptoms would lead to a CT scan, and based on those images a surgery to remove the kidney might take place.  Once removed, the pathology could determine that it is this diagnosis instead of the far more common and less aggressive version, a benign angiomyolipoma.

“Most of the time surgery cures this but targeted therapies would be the most common route,” said Reed. “These might be guided by a precision medicine consultation after next generation DNA testing of the tumor to look for rational approaches like we would do at Moffitt.”

In an October 2021 update, Ham said she underwent surgery. Despite a successful procedure, she had new symptoms five weeks later. She revealed her scans showed that “the cancer spread and had become very aggressive … again.”

She followed her surgery with chemotherapy treatments.

“We were of course hopeful that this chemo would work but after a few rounds we scanned again and the chemo wasn’t doing a darn thing — all the cancer was still progressing. Another gut punch,” said Ham. “We’re always trying to stay optimistic that this will be the treatment that works, but the truth is there is no clear path on how to battle this, so we’re just gonna keep fighting.”

Ham’s death came just nine days before her 16-year wedding anniversary.

“Despite the deep grief my family and I feel today we want to celebrate an amazing woman and a life well-lived,” said Robert. “She loved passionately, created beautifully, provided abundantly and was my best friend all the way to the end.”