Miracle Kids 2022: Callan DiAntonio

After being diagnosed with an aggressive form of leukemia, newborn Callan DiAntonio came through treatment thanks to the team of experts and supportive family surrounding him.

 

It all started with a fever.

Callan DiAntonio came into the world in July 2020. Just two-and-a-half weeks after his birth, his parents, Amie and Andrew, noticed a high temperature. They brought him to Golisano Children’s Hospital (GCH), where testing found Callan did not have any neutrophils, a type of white blood cell that helps fight infection.

Everyone figured he had caught a virus; it was the height of the COVID pandemic, after all. Genetic tests for congenital neutropenia, a genetic rare condition that causes low levels of infection-fighting neutrophils, came back negative and he began improving, so everyone thought it was resolved.

But a couple months later, Callan spiked another fever. Amie and Andrew brought him back to the hospital. They thought it’d just be a short observation – but it ended up being just the beginning of a challenging first year of life.

 

A Diagnosis Requiring a Team of Experts

Before they could be cleared to go home, Callan’s team noticed his kidneys were failing. As they worked to find out why, his health continued to decline. He had trouble breathing, and it was worsening fast.

In an examination, Jeffrey Andolina, M.D., associate professor in the Department of Pediatrics, Division of Hematology/Oncology, and director of Pediatric Bone Marrow Transplantation at GCH, discovered Callan’s kidneys were huge – about the size of an adult’s kidneys despite being only 4 months old. As part of Callan’s care team, Ayesa Mian, M.D., associate professor of Pediatric Nephrology, played a critical role in helping diagnose Callan as well as manage his kidney problems, including hypertension.

Callan’s kidneys were so large that they pushed up on his lungs, making breathing difficult. Further tests revealed the troubling diagnosis: an aggressive form of acute myeloid leukemia (AML).

AML is a type of cancer that impacts the bone marrow where blood cells are made. It can affect aspects of the blood, including red blood cells, white blood cells and platelets.

“His leukemia had infiltrated all his organs at diagnosis. He had massively enlarged organs, which caused major issues,” Andolina says. “He was so sick at that time that he needed to be transferred to the PICU.”

In the PICU, he started dialysis because of kidney failure. He also had to be intubated and put on a ventilator to help him breathe. That same night in the PICU, he immediately began receiving chemotherapy to treat his AML.

His medical teams were unsure if he would survive the night.

“It was a blur from there,” Callan’s mom, Amie, says.

Miraculously, after a week in the PICU, he improved enough to come off dialysis and the ventilator. He stayed in the PICU for about a month before moving to the Pediatric Oncology Unit in 7 North. Less than a day into his stay on the unit, he needed emergency bowel surgery because of an issue where his intestines were twisted and had become obstructed, causing him to have abdominal pain and vomiting.

“It was one thing after another, it seemed like,” Amie recalls.

Nicole Wilson, M.D., Ph.D., assistant professor in the Department of Surgery, Pediatric Surgery, took Callan to the operating room and found adhesions, bands of scar-like tissue that had caused the intestinal obstruction. She relieved it and two days later, Callan required a second-look surgery to treat the adhesions. Thankfully, he recovered quickly and has had no abdominal issues since.

He received two cycles of chemotherapy in the hospital. While many children get to go home between treatments, he had so many complications that he had to stay until February.

“He definitely had one of the most complicated and difficult treatment courses that any patient has undergone,” Andolina says. “He had an unbelievable number of things happen to him in addition to his very high-risk leukemia.”

Thankfully, he was able to finish chemotherapy, and his team and his family moved forward toward the next step: a stem cell transplant.

 

Rebuilding the Immune System with a Transplant

Because AML can be difficult to cure with chemotherapy alone, many patients end up requiring a stem cell transplant. Callan’s story is no different.

In a perfect world, someone in Callan’s family or someone registered on the National Bone Marrow Registry would be a match. But, as often happens, no perfect matches were found for Callan.

His team consulted with experts at the University of Rochester Medical Center (URMC) as well as outside experts. They decided to try an umbilical cord blood transplant. For this procedure, someone donates blood from the umbilical cord after a baby is born. The stem cells from the umbilical cord are stored until someone who’s a match needs them.

Callan’s team thought this would be a good first step because this type of transplant tends to be a reasonable option and a perfect match isn’t needed. So they started with an umbilical cord blood unit from Spain. Callan was admitted to the Bone Marrow Transplant unit in the Wilmot Cancer Center, where a team who specializes in bone marrow transplants could care for him day and night.

Everyone knew there was a chance the transplant wouldn’t be successful. And, unfortunately, that was the case for Callan. The stem cells failed to grow (engraft). His blood counts went to zero and his white blood cell counts never increased.

It was time for plan B: A haplo-identical donor bone marrow transplant. With this type of transplant, the donor does not need to be a close match; a half-match would work. Parents, siblings or children of the patient often are eligible. It is a newer type of transplant that is not available at all transplant centers, although it has been performed at URMC since 2015.

It requires a family member who’s a half-match stepping up to donate. Callan’s father, Andrew, was ready to take on the task.

The day before the procedure, Andrew stayed the night at the hospital with Callan so he could be ready to go to the operating room early in the morning. For Andrew, it felt real for the first time when, as the team got ready in the OR, they asked him to whom he was donating. He saw the faces of concern when he said it was for his own infant son.

“I woke up really sore a few hours later and got to be upstairs just at the time they were bringing it up to infuse him,” Andrew says. “That was really kind of a wild day. It’s definitely something I will never forget.”

Amie adds, “He saved his life.”

About two weeks after the transplant, tests showed his father’s stem cells had engrafted. It was working! A while after, Callan returned home from the hospital and did well, although he did have one seizure related to hypertension in June 2021.

“He recovered from that quickly and has done beautifully ever since,” Andolina says

 

Finding a “New Normal”

Once Callan was home, his family started looking toward milestones. Three months went by and, despite the seizure, he continued to heal. Six months after the transplant, he could stop taking some of the medications.

While the milestones felt good, a cloud always lingered in the back of the family’s mind. A patient isn’t considered “cured” of AML until five years after the transplant, but they had been told most relapses happen within the first year.

April 2022 marks Callan’s one-year transplant anniversary – a milestone that means so much to his parents.

“You’re sort of holding your breath for that first year,” Amie says. “It was the fastest year of our life because so much happened but it’s a huge thing to get to this. He had a check-up at the hospital and seeing that his labs looked good – it’s a very good feeling to get to a year.”

While they still keep in close contact with Andolina and the team at GCH, the family’s focus has shifted. Callan continues exploring the world. He loves his 4.5-year-old brother, Tanner, and follows him everywhere. He wants to do anything Tanner does. And he’s a fearless people person – skills his parents say he likely developed as an infant, when he went through so much hardship yet had so many complete strangers looking out for and caring for him.

“It’s so terrible he’s going through it but he will have no memory of this,” Amie says. “He has the scars to show but that’s it and he just lives life like any other 20-month-old. We will tell him about those scars someday and how brave and strong he was!”

Andolina says watching Callan go from a tiny baby who received help from many areas of URMC – the PICU, Pediatric Nephrology, Wilmot Cancer Center’s Bone Marrow Transplant unit and 7 North – to a healthy toddler has been special.

“Everyone in the hospital would’ve done anything for this kid to do well,” Andolina says. “He had so many people rooting for him and it’s just rewarding to see a kid with a difficult disease and a lot of complications completely recover from all of those things.”

His parents also have high praise about the care Callan received at GCH that allowed their little infant to grow into a happy, high-spirited toddler.

“We say this all the time: he received care that was second to none,” Amie says. “It was amazing to see the teams that had to work together. These places were like our home for many months. People truly cared for Callan, and us, like family and got us through the most difficult time of our lives.”

She adds, “Callan is here today because of all of them.”