Meet Kid Captain Carter Schmidt
A young boy’s family believes fate combined with expert health care saved his life, overcoming a rare cancer.
Carter Schmidt had been healthy until he was 9 months old, when his mother, Tiffany, and his day care provider noticed he was pale, lethargic, and not eating. A blood draw taken at his local doctor’s office showed a high white blood cell count and low red blood cells. It also indicated a disease that his mother never thought possible.
“He said Carter might have leukemia,” she recalls. “They said we’d have to go to Iowa City immediately and that’s when we knew it was serious.”
Specialists at University of Iowa Health Care Stead Family Children’s Hospital diagnosed Carter with juvenile myelomonocytic leukemia (JMML), a rare cancer of the blood that affects just one in 1.2 million children.
Finding help for a rare disease
Carter was given a blood transfusion on the first day, followed by platelets the next day. Because Carter’s type of cancer is so rare, Tiffany said doctors reached out to specialists worldwide to research the best course of action. A bone marrow transplant study from Japan showed positive results.
“They said it’s a good thing if you’re under the age of 2, because you have a better survival chance than if you’re over the age of 2,” Tiffany remembers, adding that even with the bone marrow transplant, her son was only given a 50% chance of survival.
The oncology team also determined that Carter had a specific genetic defect in his blood cells that made it resistant to standard chemotherapy treatment, so his care team pursued the bone marrow transplant. Siblings typically are a good match for bone marrow donations, but because Carter is an only child, his care team searched the bone marrow registry for an unrelated donor.
One perfect match
They found one perfect match: a Mississippi man who agreed to be his donor. Tiffany said the donor didn’t even recall signing up for the registry; something he had done almost 25 years earlier when a friend was diagnosed with leukemia while he was in college.
“The fact that someone who doesn’t know us at all would donate and save someone, I think that’s beautiful,” Tiffany recalls.
To prepare his body for the transplant, Carter was given high doses of chemotherapy for 10 days that wiped out his immune system, as well as his own bone marrow and leukemia cells.
As the transplant neared, Carter’s donor developed shingles, which meant he had the chickenpox virus. With a weakened immune system, giving Carter bone marrow from someone with the virus could have risked his life. The transplant was temporarily put on hold.
“I thought I was going to fall to the floor,” Tiffany says.
Fortunately, his donor recovered, and Carter received the transplant two days before his first birthday.
“He was awake and feeling all right,” Tiffany says of the procedure. Afterward, however, Carter began to feel ill, as “his body was trying to reject the new cells. It was just rough for a while.”
A grateful family, a team effort
Carter’s health gradually improved and he stayed in the hospital for three months before being discharged.
When they went home, Carter needed 12 medications around the clock, including anti-rejection medication, which ended after one year. He also used a feeding tube for six months, but eventually “began eating like a champ,” Tiffany says.
All through the process, the family felt grateful for the care given by everyone they encountered at Stead Family Children’s Hospital.
“From the initial admission to when we got to go home, everyone was so kind and helpful,” Tiffany says. “Carter was 9 months old when he was first admitted. He had multiple blood draws, multiple times a day. The nurses were so kind and calm with him. When he was inconsolable, the Child Life team was right there to calm him down, which was comforting for us. There hasn't been a nurse, doctor, or staff member that I met that I haven't liked.”
Carter’s Hawkeye connection
Tiffany notes that her father, Kent Ellis — Carter’s grandfather — is a cancer survivor who played football for the Hawkeyes and was one of the team captains in 1980.
“It would mean the world to the both of them to walk out on the field, hand in hand, and share that moment together,” she said of Carter being chosen as a Kid Captain.
Now 8 years old and in second grade, the Coralville boy enjoys school, bike riding, soccer, swimming, and other activities. Carter also has a creative streak and enjoys fixing machines.
Tiffany said Carter is considered cured and he currently returns to the hospital for checkups every two years.
“We are so fortunate to have the hospital right here,” she says. “The nurses and doctors saved my baby’s life, and I am forever grateful for them. You can't find better care anywhere else.”
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