A mom of a 2-year-old boy diagnosed with cancer is urging parents to be persistent with doctors if they worry something is wrong with their child.
Alison Miller’s son, Atlas, was 8 months old and just learning how to walk when he fell and fractured his arm. After being referred to an orthopedic specialist, Alison and Atlas’ dad, Xavier, voiced their concerns about a lump they had recently noticed in the tot’s wrist.
“As parents, we know our children better than anyone else,” Miller tells PEOPLE in an exclusive interview. “We voiced our concerns about the lump in his wrist at every single appointment.”
Still, appointment after appointment, “the concerns were dismissed,” she says. “The doctor assured myself and Atlas’ dad that the lump was ‘normal.’ ”
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Ultimately, Atlas was put in two casts on his left arm. After both casts came and went, the lump was still there. Doctors told the couple to let them know if the lump did not go away, or if it grew any larger in size.
“I took pictures daily, dating them and calling this doctor consistently until they agreed to do additional imaging,” Miller says.
It was that insistence on imaging that eventually led doctors to find a mass between Atlas’ ulna and radius. Following an urgent referral to an orthopedic oncologist and surgeon, Atlas was diagnosed with a pediatric sarcoma — a malignant tumor that can develop in children and young adults, and occurs in bone, soft tissue, fat, joints, nerves, blood vessels or skin.
Alison Miller
“His exact diagnosis is undifferentiated spindle cell sarcoma CIC-NUTM1 fusion, a rare and aggressive sarcoma with no cure that has a five-year survival rate estimated to be 17% to 43%,” his mom explains.
While it’s a heartbreaking diagnosis, Miller remains optimistic — and confident that she made the right decision by urging doctors to take a second look at her son.
“Had we not been persistent, had we allowed them to drown out our voices and brush off our concerns, Atlas may not be here today,” Miller tells PEOPLE.
Alison Miller
There can be challenges with diagnosing pediatric sarcomas, largely because they have symptoms that may overlap with other common injuries and ailments.
As Miller explains, “Atlas’ very first symptom was weakened bones that fractured; his second symptom was the mass.”
In sarcomas, lumps are painless and typically found in the arms, legs, chest or abdomen.
“Atlas has had masses in his left arm, next to his heart, in his lower back directly next to his spine, and once again back in his chest directly next to his heart,” Miller says.
As part of his treatment, Atlas had his left arm amputated, and endured open chest surgery, as well as “countless cycles of some of the harshest chemotherapy medications available, 53 rounds of proton radiation, and is currently on week six of cycle one for a clinical trial that we hope will prolong his life,” Miller says.
Aug. 2, 2024, marked two years since Atlas began his treatments and, for Allison, the experience has been a lesson in remaining steadfast when it comes to voicing concerns regarding a child’s health.
Alison Miller
“My advice to other parents would be to trust your intuition,” she says. “Do not allow medical professionals to dismiss your concerns because in some cases early intervention and timely diagnosis can be the difference between life and death.”
With her family’s life upended since Atlas’ diagnosis, Miller is now focused on spreading awareness for childhood cancer,.
Alison Miller
“Atlas’ cancer journey has changed our lives in so many ways and we will be his voice and advocate for him and all other children for the rest of our lives,” she says. “His diagnosis is terminal but we will not give up on finding a cure.”
