Meet Kid Captain Atlas Coleman
Call it a parent’s intuition. Call it knowing that expert health care happens at University of Iowa Health Care Stead Family Children’s Hospital. Whatever you call it, Atlas Coleman’s family is forever grateful that a second opinion meant an early diagnosis for their baby’s rare, aggressive cancer.
Stacy and Neal Coleman took their son to the emergency room after Atlas suddenly became inconsolable while eating a grilled burger when he was about 15 months old. An X-ray showed no foreign objects, but revealed a lung abnormality, and after a subsequent CT scan, doctors diagnosed Atlas with congenital pulmonary airway malformation, or CPAM, a non-cancerous lung lesion.
While that type of cyst is benign, it had the potential to turn malignant, so it would need to be removed. The couple decided to schedule an appointment at Stead Family Children's Hospital for another opinion.
“After meeting with the surgeon, we immediately knew we wanted to transfer Atlas’ care to the children’s hospital,” Stacy says. “They made us feel so comfortable about what was to come.”
How surgery found the ‘rare thing’
At about 18 months old, Atlas slept in his car seat as his parents drove from their central Iowa home to Iowa City for surgery to remove the lower lobe of his left lung.
“We had very good medical advice, but of course, it’s scary,” Stacy says. “I remember crying in the car on the way there.”
Neal notes that the surgeons at Stead Family Children's Hospital perform this type of operation once or twice per month, more than anywhere else in the state.
“Talking with a surgeon who does it routinely made us feel more comfortable,” he says. “There was some comfort knowing we were in good hands.”
Expecting a two-hour surgery, Atlas’ parents say the operation took twice as long, as Erica Carlisle, MD — sensing Atlas might have a rare cancer, as something did not look quite right — spent extra time to make sure his entire chest cavity was clear of abnormalities.
An analysis of the removed tissue would tell the couple if it was CPAM or something else.
“The other possibility was so rare that we did not expect anything out of the ordinary from the biopsy results,” Stacy remembers.
On the final day of their hospital stay, Carlisle came to the family’s room with the results of the biopsy.
“She said, ‘The really rare thing that we thought was unlikely to happen, happened,’” Stacy recalls.
The couple learned their toddler had pleuropulmonary blastoma, a fast-growing cancer that forms in lung tissue.
“It’s very rare,” Stacy says. “It’s only diagnosed a few times a year.”
Designing a custom treatment plan
Through genetic testing, they also learned Atlas has a rare mutation of the DICER1 gene that puts him at high risk for other types of cancers.
Though shocked by the diagnosis, they were relieved the cancer was caught when it was, especially after being given advice elsewhere to monitor the cyst for six months.
“If we had waited another month, the cancer would have been in a more advanced stage,” Neal notes.
Because of its rarity, Stacy said there was no standard plan for treating it, but Atlas’ care team at Stead Family Children’s Hospital reached out to a partner program to design a treatment plan specific to his needs.
Atlas underwent six months of chemotherapy, an intense time for the family, filled with in-patient stays, weekly drives to Iowa City for infusions and clinic visits, regular scans, additional surgeries, and “the seismic shift that living our day-to-day with a child with cancer had on our lives,” Stacy says.
“It can so easily feel overwhelming and insurmountable, but a constant source of comfort was the capable team supporting him,” she adds. “They were always patient, responsive, and caring.”
Here to stay
Scans showed no detectable cancer in his body throughout the course of Atlas’ treatment. “It was in remission for the entire time of his surveillance,” Stacy notes, but because Atlas was so young at the time, many of his blood draws and other procedures were difficult, resulting in medical anxiety.
“He didn't understand that these pokes were necessary to help him get better, so he resisted at every turn,” she says. “But even at his most challenging, we were never treated with anything except patience and kindness. The hospital’s Child Life team made an effort to learn what helped him get through the challenging moments, and his doctors and nurses partnered with us on ways to make each appointment as easy as possible on him.”
Neal noted that the couple has not considered going elsewhere for Atlas’ care.
“We had such a good experience and felt confident in the care team there,” he says.
While concern about his lungs has diminished, Neal says the DICER 1 mutation means cancer could appear in his kidneys, thyroid, or elsewhere, so Atlas will need to be continuously monitored, possibly for life.
Now 8 and in third grade, Atlas has tested cancer-free for six years. The West Des Moines boy enjoys drawing, sports, reading, and telling jokes.
“He likes all the things,” Stacy says. “He picks up an interest and he never puts it down.”
Atlas also loves going to local cancer walks to wear his survivor shirt, “letting others know that they can beat this, too,” she says.
“We tell people all the time: Stead Family Children's Hospital saved our son’s life,” Stacy adds. “He is alive today because of the knowledge and proactive care provided to him by an incredible team of doctors, nurses, and support staff. We are endlessly thankful to be from Iowa and have such close access to this amazing hospital.”
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