Sixteen feet.

That’s the height of 13 bowling pins. It’s four-fifths the size of an adult giraffe, and a little bit longer than a Volkswagen Beetle.

But for Tiffany and Michael Schmidt, 16 feet has a much more personal meaning.

For the Schmidts, 16 feet is the length of the strand of beads that represents every procedure, every poke, every scan, every chemotherapy treatment their 2-year-old son, Carter, endured after being diagnosed with a rare form of leukemia in 2017.

A cat bead represents a CT (computerized tomography) scan. Round beads are for chemo, and Carter’s strand holds 60 of those. He has a bead for celebrating his birthday in the hospital, a bead for his bone marrow transplant, and a bead for the countless visits from University of Iowa Dance Marathon volunteers.

There’s one for finger pokes and blood draws, and one for sedations. And there’s a University of Iowa bead.

“This one,” Tiffany says, pointing to the UI bead, “this one is my favorite.”

More than a sinus infection

Today, Carter is a happy and healthy toddler who loves cars, trains, and planes. But in May 2017, Tiffany and Michael, both students at the University of Northern Iowa in Cedar Falls, knew something was seriously wrong with their son. 

Carter had started showing signs of being sick. The typically happy and energetic baby was lethargic. He showed little appetite, yet he was throwing up often. He bruised easily and was pale. A trip to a walk-in clinic in Cedar Falls led to a sinus infection diagnosis, and they were sent home with antibiotics.

“He was just not healthy,” Michael says. “We just had this feeling that he just wasn’t healthy, and we didn’t know how we knew that.”

The next day was Carter’s scheduled checkup, “and the doctor said that this didn’t look like a sinus infection or a cold or anything like that,” Michael says. “He wanted to run a blood test.”

The results of Carter’s blood test were serious: His red blood cell count should have been 150, his was 2; he had nearly triple the number of white blood cells that he should have had.

“The doctor came back,” Tiffany says. “He said, ‘Your child may have leukemia,’ and I just felt my whole body go cold and… everything stopped.”

They were directed to go to University of Iowa Stead Family Children’s Hospital that day.

A rare diagnosis

Arun Modi, MBBS, MPH, a pediatric oncologist at UI Stead Family Children’s Hospital who specializes in blood cancers, became Carter’s oncologist.

“When (Carter’s) parents brought him to the hospital, we initially suspected he had a blood cancer,” Modi says. “What we found out after doing some bloodwork and testing was that he had an extremely rare kind of blood cancer, called juvenile myelomonocytic leukemia, or JMML.”

JMML is a serious chronic leukemia that affects mostly boys 2 years old or younger. It accounts for about 2 percent of pediatric cancers and affects one or two children out of 1 million each year.

“This is the kind of cancer where your bone marrow produces an erratic type of blood cell, generally due to some kind of genetic defect in the cells, not in the body,” Modi says. “Carter had a very specific genetic defect in his blood cells that made it very resistant to normal treatments, like chemotherapy.”

Identifying the type of leukemia Carter had, and its resistance to chemotherapy, gave Modi the information he needed to set Carter’s treatment: a bone marrow transplant.

“Carter’s disease had a very particular genetic mutation that is known to cause JMML, and extensive research has shown that there is no new medication or targeted therapy that we can use for his treatment,” Modi says.

Bone marrow donors are typically found within the family, Modi says—usually a sibling who is a perfect match at the tissue-typing level. Because Carter is an only child, Modi and his team had to look for unrelated donors in the bone marrow registry. An unknown donor was found in Mississippi, and he agreed to donate as soon as possible. Carter’s care team began to get him ready for the transplant.

To prepare, Carter had to go through high doses of chemotherapy to “wipe out” his own bone marrow as well as his immune system and all the leukemia cells.

An unexpected wrinkle came as Carter got closer to his transplant: His donor had developed shingles, which meant he had the chickenpox virus in his blood.

“Carter had no immune system at that time,” Modi recalls. “If we were to give him stem cells from someone who had chickenpox, he may develop chickenpox—and that could have been deadly because of his lack of an immune system.”

The transplant was postponed for seven days to allow the donor to recover.

“Luckily, the donor was able to recover and donate his marrow, and we were able to successfully transplant Carter with the stem cells,” Modi says.

Right place, right time

UI Stead Family Children’s Hospital is home to Iowa’s only nationally ranked pediatric cancer program. In addition to providing the most advanced care available, physicians are also actively involved in research that may lead to new breakthroughs. “Carter’s disease is extremely rare, and because it is so rare there is a need for doing more research,” Modi says. “That’s why University of Iowa participates in multi-institutional collaborative groups like Children’s Oncology Group, to participate in research where we collaborate with 200 different hospitals. [This allows us to] collect enough patients in one study that we can have reasonable findings and analysis of the data that gives us good results which can be interpreted and put into effect.”

With Tiffany and Michael’s permission, Modi and his team saved some of Carter’s diseased cells. DNA from those cells may be used in research and collaboration to help children in the future.

Once the diagnosis was made, a treatment plan could be established.

“A comprehensive children’s hospital like UI Stead Family Children’s Hospital has all the resources that are necessary to perform a very complex task like a bone marrow transplant,” he says. “As you can imagine, we had to have a very large team working to make sure Carter’s procedure was done right.”

The team includes specialized doctors, nurses, and other staff members including “a donor coordinator to help identify a donor a nurse educator to work with Carter’s family and provide them education about their son’s condition, a psychologist who ensures all of Carter’s developmental and psychological needs are being met. Finally, a team of dedicated pediatric pharmacists who specialize in stem cell transplant medications, which are very unique and extremely rare, and are able to make sure that Carter was getting the appropriate amount of medications by doing complex blood measurements and avoid any kind of toxicity from unnecessary medication exposure. 

Environment is key, too.

“We have a dedicated floor where all of the air is filtered at a very high rate so he does not get any infections from the hospital,” Modi says. “All of these resources are dedicated to make sure that kids, when they are most vulnerable without an immune system, are safe and they have the best outcomes.”

An unexpected phone call

John Graham is a lawyer in Ridgeland, Mississippi, a town of about 24,000 residents located roughly 800 miles south of Iowa City. Because he works with patients involved in accidents, getting phone calls from the local hospital is not uncommon.

But a phone call on June 9, 2017 – a day before his birthday – caught him a bit off-guard.

“I was sitting in a continuing education class and I get this phone call from the University of Mississippi Medical Center,” Graham recalls. “I let it go to voicemail and during the break I went out to return the call.”

He says he could tell from the tone of voice at the other end of the call that “this was not our standard medical records request call,” he says.

She asked if he had lived in Oxford, Mississippi. She then asked where he grew up.

“I was like, ‘Where is this conversation going?’” he says. 

Toward the end of the call he got the answers he needed: The woman was calling from the Be the Match program, and he had registered as a donor when he was in college.

“In 1993, in my first year of college, I had a fraternity brother who had leukemia, and we did a big donor drive for him,” Graham recalls. “I didn’t really think anything of it other than how can we help our friend, so I registered. That’s been a really long time ago.” John learned, unfortunately, that he wasn’t a match for his friend, and over the years, forgot that he had registered.

Graham learned he was initially a match for Carter but would have to have more tests to be sure. He agreed, and tests confirmed the initial results.

“They ultimately told me, ‘You’re the guy. You have matched, and you’re a really good match,” he says. “They told me there was no pressure, it was my decision, but when they told me I was a match I knew I had to do it.”

All Graham knew about the recipient was that it was a child who didn’t live in Mississippi.

‘You saved my son’s life’

According to Be the Match policy, marrow donors and recipients must remain anonymous for a year after the transplant. Even though he couldn’t connect with the family, he received a few updates. 

“My initial update was that he was very sick,” Graham says. “That was hard to hear. But then six months later, the update was much more positive. It looked like things were maybe looking better for this little fella.”

At the one-year mark, he got another update: He’s alive. And the donor program could release his contact information.

“I just wanted to know who this little fella was out there,” he says.

He was told the recipient family would receive his information, and he decided not to make the first call.

“I was going to wait to see if they wanted to reach out to me,” he says. “They are in a different position than I’m in.”

Three weeks later, caller ID on his phone identified an incoming call as coming from Iowa. Graham answered and heard a young woman’s voice.

“Are you John Graham?” she asked. “You saved my son’s life.”

It was an emotional phone call. When he’d gotten the initial call from the medical center a year before, he’d just lost a friend and was having some internal struggles. Having the opportunity to help Carter, he says, made him realize how precious life can be.

“That phone call, when they told me I matched, was kind of a turning point,” he says. “I have so much to be fortunate for. Healthy family, healthy children, and there’s a little family out there suffering somewhere.”

Hearing from Tiffany “was pretty phenomenal. It made me feel good, not gonna lie,” he laughs.

Since then, he’s also talked with Michael several times, and the three exchange text messages.

“I haven’t talked to Carter, he’s still a little guy,” Graham says. “But one of these days, we’re going to chat. And I look forward to that day.”

Positive prognosis

Today, Carter is a typical 2-year-old. He plays with cars and trucks, and keeps his parents busy. Tiffany has become involved in advocacy efforts for pediatric cancer, even shaving her head to help raise awareness of the need to support funding for childhood cancer research.

Michael says they’ve been told Carter’s prognosis is good, and he should be able to live a normal life: play sports, go to college. He’s grateful for Modi and all of Carter’s care team at UI Stead Family Children’s Hospital.

“Being at the children’s hospital was great for so many reasons,” he says. “They’re cutting edge on research. Carter’s particular treatment plan was actually developed in Japan and was just getting over to the United States, so being on the cutting edge and figuring out what works best—I just can’t imagine being anywhere else and not having the resources that UI Stead Family Children’s Hospital was able to provide.”

Registering to become a bone marrow donor is easier than you think. Visit uihc.org/iowa-marrow-donor-program to learn more.

Related Medical Services