A Canadian mother and influencer says she never thought she'd be dealing with something as awful as cancer. But in the past year, her family has been hit with "bad luck" — twice.
Sarah DeMelo is waiting on a diagnosis for what doctors are "fairly certain" is cancer, eight months after her son Benjamin was diagnosed with leukemia.
"I've been hearing lately that we're 'so strong' — but you have no choice," DeMelo said. "When you're handed this, you really have no choice but to be strong for your kids."
DeMelo, who lives in Oakville, Ont. with her husband Brad and their two toddlers, said her oldest son Benjamin had been sick towards the end of last summer. For two weeks up until Benjamin’s diagnosis in mid-August, the family had been in and out of doctor’s offices and hospitals.
"Everyone was kind of dismissing me," the 35-year-old mom said. "I knew something was wrong with him, but I never in a million years thought that this is what it was."
Benjamin was just two weeks away from his third birthday when he was diagnosed with acute lymphoblastic leukemia (ALL).
ALL is a type of cancer that begins in the stem cells of blood. According to the Canadian Cancer Society, in leukemia there is an overproduction of immature blood cells — called blast cells — that develop abnormally. Those cells then over time crowd out the normal blood cells so they can’t do their jobs.
The Canadian Cancer Society said ALL is the most common type of leukemia diagnosed in young children, and it occurs more often in boys.
Benjamin was diagnosed with B-cell ALL, a favourable classification of ALL.
DeMelo said she remembers that moment distinctly. His diagnosis was confirmed at around 1 a.m. on Aug.12, 2022.
"I remember sitting there in the dark feeling so alone, not being able to talk to anyone because everyone was asleep, thinking ‘how am I going to tell my mom about this?,'" she recalled.
"My husband was there with me, he was sleeping beside Benjamin and I just had this awful feeling. I didn't know what the future would hold."
Her younger son Elliot had his first birthday just two days prior, which the family didn’t get to celebrate.
On the morning of Aug. 12, a Friday, DeMelo had to break the news to her mom.
"I had to step out of the room to call her, and I couldn't get the words out.
"I remember just breaking down in the hallway outside of Benjamin's hospital room and the nurses rushing over and pulling me into a private room."
DeMelo said she still gets emotional every time she walks through that hallway.
Eight months of ups and downs
Benjamin began treatment the following Monday.
DeMelo said they were told the first four weeks of treatment were "really important" because on the 29th day, the doctors would do a test to determine whether he still had cancer in his bone marrow.
"The first month was awful and he had to be on these certain drugs," the mom said.
"It felt like my Benjamin was gone… Like he was replaced with this crazy, emotional (kid) and just eating constantly."
Later in his treatment, he lost what DeMelo said was his "long, beautiful blond wavy hair," and developed a "moon face" from his medication.
"He just went through such a big physical change that it was really hard for me specifically to see him like that."
On that 29th day, DeMelo said, her son got "the best news possible" and went into remission.
Because of the favourable outcome, Benjamin was able to join a study through which he will only have to do a year and a half of maintenance — shorter than the norm for boys.
Last month, he ended his frontline treatment, an intense treatment, and was on a three-week chemo break. "He's full of energy and an appetite," DeMelo said. "We've really enjoyed this last little break."
His next treatment phase began on Monday, a day the parents were dreading.
DeMelo said her son understands a lot for his age.
She said he understood early on there was “something wrong” and that he had to go see doctors and take medicine to get better.
"I don't think he still understands the severity of his condition," the mom added.
"I don't know if he thinks it's rare because when you go to SickKids... he sees other kids his age that have no hair, and they're getting chemo. So to him, it kind of feels normal."
For DeMelo and her husband though, it hasn't been easy.
"It’s just hard as a parent to see your little boy, who's usually so full of energy and so happy, just so tired and not like not himself."
A battle of her own
In addition to her son's difficult diagnoses, DeMelo had a health scare herself.
She is still waiting on an official diagnosis, but her oncology ear, nose and throat (ENT) specialist is “fairly certain" it’s cancer.
DeMelo first felt something under her chin around July 2022, but as her son became sick she “brushed it off."
In September she had an appointment for it and did an ultrasound, than a CT scan later in the fall. Doctors said her lymph nodes could just be swollen, but ordered an MRI “just to be safe."
DeMelo had an "awful" hour-and-a-half-long MRI on the afternoon of Jan. 26 and was told results could take ten days. But early next morning, she got a call from her family doctor that a tumour was found in her salivary gland.
"I was scared. I was worried," she said.
That weekend, she received her MRI report to her email address.
"Needless to say, I will never open up another medical document again for myself," DeMelo said.
"I opened up the report and... the words 'highly concerning' were everywhere," she remembered.
"That was probably the worst night. I went down a really dark hole… things like, 'am I going to be around for my kids?'"
The Canadian Cancer Society says salivary gland cancers are very rare. When a cancerous tumour does develop in the salivary glands, it can grow into nearby tissue and destroy it; it can also spread to other parts of the body.
DeMelo said hers was in the sublingual gland, an even rarer spot.
"I was really angry and I didn't understand why this was happening. My son had just finished the most intense part of treatment… and we had felt like we just finished the hardest part and then we just got knocked down again."
DeMelo was then referred to an ENT (ear, nose, throat specialist) for a biopsy.
"She really reassured me and said 'we'll just do a surgery and maybe a little radiation and everything should be fine.' So we did a biopsy — it came back inconclusive with malignant potential."
Another biopsy with an oncology ENT also came back inconclusive, she said, and an invasive surgery was needed.
Three weeks ago, DeMelo underwent the surgery, a neck dissection, to remove her sublingual and submandibular glands, as well as lymph nodes, on the left side. She is now healing as she waits for the pathology. Her doctors are fairly certain the tumour was cancerous.
"I always try to remain hopeful and positive, but of course, I'm scared… there’s still so much unknown," she said.
At least knowing the tumour is gone from her body brings some relief, she added.
An ‘amazing’ support system
DeMelo said she feels "very fortunate" for her support system.
"The reason I am able to be so strong during these times is because I have an amazing supportive partner who has been so involved in it all," she said of her husband Brad.
"He has been my rock."
Her family and friends have also helped out immensely.
“I have the best parents and in-laws that I can ask for. They have been so supportive, helping out around the house and taking care of the children."
DeMelo said she’s also grateful for the community she built online through her work as an influencer.
That community "has been extremely supportive as well for both Benjamin and myself; sending books for Benjamin, or even gift cards," she said.
Sharing her family’s health journey online has been like keeping a diary for DeMelo. But that’s not the only reason she’s been sharing.
"I want to champion for childhood cancer. I want to show that it's not as rare as people think it is," the mom said.
"I want people to know what childhood cancer looks like, how it affects the family, and raise awareness for it."
DeMelo also said she wants to empower parents to advocate for their children’s health — and their own.
“Trust your gut and your instincts if things don't feel right," she encouraged. "If I didn’t trust my mama instincts with Benjamin, he could have been in a different position at diagnosis."
In the meantime, DeMelo and her family are hopeful for the future.
"We're going to get through this, and the only way out is through," she said.
"As much as cancer sucks and I hate it, and it's taken away a lot of joy and experiences from our family, I think there could be a lot of beauty in it as well; it really teaches you to enjoy every day, every normal moment."