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Their baby was diagnosed with cancer at birth. Here's how this family coped

The Hare family spent 8 months living in the hospital while son Callahan had treatments.
Callahan, 1, is 'incredibly tough.' Soon after birth he was diagnosed with cancer and he was 48 hours old when he had his first spinal tap.
Callahan, 1, is 'incredibly tough.' Soon after birth he was diagnosed with cancer and he was 48 hours old when he had his first spinal tap.Courtesy the Hare family

When Kate Hare was giving birth to her son, Callahan, he became stuck and needed help. After vacuum-assisted deliveries, babies routinely head to the neonatal intensive care unit (NICU) for observation. But testing quickly revealed something was seriously wrong with the newborn.

“(The doctor) said, 'It looks like there may be a malignancy in his blood.' I had a blood cancer when I was 25 so when I heard her say that, I knew what it meant,” Matthew Hare, 38, of Columbus, Ohio, told TODAY Parents. “I asked her, ‘Is that leukemia?’ and she said, ‘We’re afraid that it could be.’”

‘Uneventful’ pregnancy to surprise diagnosis

Kate describes her pregnancy with Callahan as “uneventful.” On April 12, 2021, she went into labor. Callahan was “being stubborn,” she said, and doctors used a vacuum to help deliver him When his parents didn’t hear about him from NICU staff, Kate worried.

“I just had this horrible feeling like there is something wrong,” the 36-year-old told TODAY Parents. “There was just this moment that I realized like oh my God I’m all alone. I literally had a baby 40 minutes ago.”

After the screenings indicated cancer, Callahan was transferred to Nationwide Children’s Hospital for more testing. Doctors learned he had infant acute lymphoblastic leukemia (ALL). The family felt shocked — Kate hadn’t even seen her son yet.  

“I was in my head (thinking), ‘Is that a thing? Can you literally be born with cancer,’” Kate recalled. “I remember saying to Matt, ‘I haven’t even met him and I feel like I am losing him.’ I got this horrible news and I hadn’t even held him yet.”

Having a newborn with cancer has been eye-opening for the Hare family. After their experience, they started a foundation to fund infant and pediatric cancer treatments.
Having a newborn with cancer has been eye-opening for the Hare family. After their experience, they started a foundation to fund infant and pediatric cancer treatments.Courtesy the Hare family

Learning more about infant ALL didn’t provide much comfort, either.   

“It’s remarkably rare,” Matthew said. “It’s a very different disease even than childhood leukemia.”

It’s rarity and difference from childhood leukemia means it can be difficult to treat. Doctors suggested clinical trials but then one of Callahan’s doctors, Dr. Suzanne Reed, found a protocol that had been used in Japan that seemed to have good outcomes. But it also meant that Callahan would need to stay in the hospital during treatment.  

“It’s a really long time. The treatments are really toxic but they feel like being there in the hospital they’re able to treat infections and things like that quickly. It gives kids a better chance,” Matthew explained. “We made the decision to move in for eight months.”

For Callahan's first birthday the family took a trip. While they were worried he would become sick--he's immunocompromised--they were able to 'create new memories' for his birthday.
For Callahan's first birthday the family took a trip. While they were worried he would become sick--he's immunocompromised--they were able to 'create new memories' for his birthday.Courtesy the Hare family

Matthew and Kate took turns —while one stayed at the hospital with Callahan, the other stayed at home with 5-year-old daughter Campbell.

Doctors didn't have any answers as to why Callahan was born with cancer. Matthew was 25 when he was diagnosed with leukemia in 2009, and had six months of chemotherapy treatment and a bone marrow transplant. He has been in remission for 12 years.

“Because of my history they did run genetic testing and there was nothing genetically (causing Callahan’s cancer),” Matthew explained. “That’s one of the big questions you always ask is, ‘Why’ or ‘How did this happen?’ And unfortunately, there’s so few cases that they can’t even really do the research to try to understand it more.”

Infant leukemia

Cancer of any type in newborns is “incredibly rare,” Reed said. In fact, all childhood cancers are considered rare, Dr. Brigitte Widemann, head of pharmacology and experimental therapeutics section at the National Cancer Institute, told TODAY in 2021. This makes it challenging for doctors to research and understand.

“The short answer is we don’t know what causes it," Reed, a pediatric oncologist at Nationwide Children’s Hospital, told TODAY Parents.

The type of cancer Callahan has occurs more often in children than other cancers.

“ALL is the most common kind of childhood cancer and because it’s more common, relatively speaking, we’ve been studying it and researching it and trying (treatments) for the past decades,” Reed said. “We’re doing pretty well at curing a lot of patients with ALL.”

But there’s no set treatment plan for infant ALL.

“We know more than we did 20 years ago but we still don’t have a really unified approach,” Reed said.

Matthew and Kate Hare took turns spending the night with Callahan in the hospital or staying at home with Campbell, 5.
Matthew and Kate Hare took turns spending the night with Callahan in the hospital or staying at home with Campbell, 5.Courtesy the Hare family

Understanding how much treatment a baby can receive remains a challenge for doctors, too.

“There’s a lot of folks involved — besides Dr. Reed and myself — who helped manage the chemotherapy and make sure we’re dosing things appropriately based on Callahan’s size and organ function,” Dr. Andrew "A.J." Picca, a fellow in pediatric oncology at Nationwide Children’s Hospital, told TODAY Parents. “We don’t want to do any harm as we strive to treat him. The other piece of this that is kind of important to not forget is that when we’re treating babies — they are babies.”

That means they needed to be mindful of Callahan’s growth and development. Callahan never learned to drink from a bottle, for example, and hasn’t learned to sit up by himself yet.  

 “It is hard to develop normally as a baby when you are in a hospital room and getting a bunch of really tough chemotherapy,” Reed said.

While the treatment he received was grueling, it gave him a chance to become cancer free. But then he started to struggle from all the medications, and they needed to adjust his care.  

“His initial therapy plan had involved about six months of rather intense chemotherapy, which would potentially go into a bone marrow transplant,” Picca said. “Callahan had experienced some toxicity from the previous chemotherapy that would put him at even higher risk.”

His doctors and parents worried that it would be too tough for him and decided to skip the bone marrow transplant and start Callahan on maintenance chemotherapy.

“The current plan is that he will continue his oral chemotherapy that he’s doing now until he’s 2 and then that would be considered the completion of therapy,” Reed said.

Still, there is a chance his cancer will return.

“Part of the reason why infant ALL is so hard to cure is because of its high relapse rate,” Reed said.

While Callahan has been in occupational and physical therapy to help his development, being at home with his big sister, Campbell, 5, has been a boost to his development.
While Callahan has been in occupational and physical therapy to help his development, being at home with his big sister, Campbell, 5, has been a boost to his development.Courtesy the Hare family

Coming home

On December 1, 2021, Callahan went home for the first time. Despite spending so much time in the hospital and undergoing harsh treatments, he's a lot like any other baby.

“He has a NG tube in his nose but outside of that if you’d look at him you wouldn’t think anything was wrong with him,” Matthew said. “His resiliency to go through everything that he has is really incredible.”

He didn’t smile until he was about 2 to 3 months old, and his parents worried that all the test and treatments made him unhappy.

But, once he started smiling, his parents saw what a happy kid he is, adding that even when Callahan felt sick from treatment, he was still relaxed.

While he’s still receiving medication to keep the cancer at bay and he needs to go for frequent check-ups, the Hares believe Callahan can live a mostly normal childhood, though he is still learning and undergoing physical and occupational therapy.

After their experience, the family wanted to help fund more infant and pediatric cancer research and started the Callahan Murphy Hare Foundation. So far they have donated $25,000 to Nationwide Children's Hospital. They hope for better treatments and screenings for infants and children with cancer.

“A lot of these drugs were initially developed for adults,” Matthew said. “We’re fortunate because Callahan responded really well and he was able to reasonably tolerate the drugs … not every kid is getting a fighting chance like he is and it’s just devastating because these are just brand new babies.”

Treatment for cancer can be tough for anyone and Callahan, 1, experienced some of the same side effects that children and adults have. When he was on steroids he looked like the 'Michelin Man' because he was so puffy. Then he struggled to gain weight.
Treatment for cancer can be tough for anyone and Callahan, 1, experienced some of the same side effects that children and adults have. When he was on steroids he looked like the 'Michelin Man' because he was so puffy. Then he struggled to gain weight. Courtesy the Hare family

The family feels grateful that Callahan is doing so well. They recently celebrated his first birthday and even went on vacation.

“I can say with 100% certainty if it was not found at birth we would not be where we are now,” Kate said. “It was honestly dumb luck that it happened the way that it did — because had we gone home it would be a very different story for us.”