Callen’s Story: Rare Leukemia and the Promise of a Pool Day

Callen’s mom, Tori, describes her 2-year-old son as a sour patch kid, “But when he’s sweet,” she said, “he’s really sweet.”  The compassion he’s shown her throughout his acute myeloid leukemia (AML) diagnosis, for example, is something she’ll hold onto for the rest of her life.

“Whenever I get into a little funk and I start crying because I’m sad over this, he sits up, puts his hand on my back and says, ‘It’s okay mommy, it’s not scary’…He wipes my tears,” said Tori. “And it’s like, I just need one minute to break down, but I’ll be right back for you.”

Four ER visits turn into months of leukemia treatment

It was Tori’s instincts that got her son diagnosed right before his entire right lung could’ve filled with fluid due to the leukemia.  A week before Callen’s second birthday in February 2023, he was having a lot of trouble breathing. “I went to the ER right away,” she said. “I’m not the emergency room type, but for some reason, something was telling me to bring him there.” This would be the first of four scary visits to the ER that week.

Callen tested positive for COVID-19 and RSV, and though he wasn’t getting better, Tori was told to go home and monitor him each time she or his dad, Ryan, brought him to the ER. After being discharged for a third time in five days, she called his pediatrician for a second opinion—Tori was terrified he’d go into respiratory failure. Callen’s doctor said he looked like he had pneumonia and wrote an order that the ER monitor him overnight. At the ER yet again, Tori asked that they give Callen fluids, and they decided to give him blood tests as well. She thought maybe he had asthma, like her.

Callen during a hospital stay

But when the doctors came back with results and sunken faces, she knew it was so much worse. All signs pointed to blood cancer.

“It was definitely the worst moment of my life,” Tori said. “All I could do was question everything. What did I do to give him cancer? What did I expose him to? What did I feed him? All I associate cancer with is death…So I kept asking them: Am I going to lose my baby? They told me no, but I couldn’t believe them… I hugged him extra tight and made some phone calls.”

That night Callen was rushed to Children’s Hospital of Philadelphia (CHOP), and shortly thereafter doctors diagnosed him with AML. The disease had already mired one of his lungs, filling it halfway with fluid.

“A few more days and it could’ve been completely filled, and who knows what could have happened after that,” Tori said. “I will never doubt my motherly instincts.”

Callen is an active little boy who has been walking since he was 7 and a half months old. “When I say he’s crazy that’s an understatement,” Tori said. “His energy is unmatched. He’s bouncing off the walls 24/7.” So, seeing him swollen, lethargic and not himself was extremely hard. “He was hooked up to a chest tube to drain the fluid from his lungs” she said. “He had more wires on him than I’ve ever seen on anybody.”

The following Monday after being admitted to CHOP, Callen was feeling better, and Tori asked that they delay treatment one day, because it was Callen’s birthday—Valentine’s Day. The nurses and doctors celebrated Callen with a birthday cake. “It meant so much to me that he got to celebrate his second birthday and not care that he’s in the hospital. He was just so excited there were sprinkles on the cake and that it was all his,” Tori said.

Later, Callen’s family would find out that his kind of AML comes from an extremely rare genetic mutation, one that has little research behind it because so few people have it.

Callen’s original treatment plan involved a bone marrow transplant, but doctors switched him to a 4-round chemotherapy regimen. The few studies that have been done on Callen’s type of AML make it difficult to know if an invasive transplant would have benefitted him. He’s also been in remission since his very first round of treatment, so doctors felt they could wait and see if he needed a transplant down the road. That means he can spend most of his nights tucked in his own Lightning McQueen bed at home.

“With his mutation, they don’t know how much that heightens the possibility that it could happen again or when it could happen,” said Tori. “That’ why it’s hard for me to believe after round four it will be over. I don’t think it will ever be over for me as a parent.”

Looking forward to a baby sister and a pool day

According to her, Callen has taken everything like an absolute champ. “At first, he was afraid of nurses and doctors, but now, he says, “Hey nurse! What’s your name?” she said. Though barely more than 2 years old, he can say “Broviac,” which is the IV line that’s embedded in his chest so he can receive chemotherapy. When he’s done with a chemotherapy session, nurses unhook the line from his Broviac, and he runs around the room yelling, “I’m a free man!”

July 2023 marks the end of Callen’s AML treatment, and an exciting new chapter for his family. He’s highly anticipating the birth of his baby sister, Cora, who is due right after his last chemotherapy round. “He talks about Cora all the time,” Tori said. “Sometimes he says she’s in my belly, sometimes he says she’s in his belly. He is so excited to be a big brother.”

For Tori, the pregnancy has had its ups and downs. “In the beginning, it was really hard to accept that I was pregnant,” she said. She couldn’t be in the room with Callen during x-rays and other procedures that could affect the pregnancy.  “He would just be screaming for me, and it broke my heart. For the first month of the diagnosis, it was almost an inconvenience, I wanted to be there for my baby who was going through this now,” she said. After a minor scare due to stress that sent her to the doctor, she decided to start taking better care of herself. “I was like this baby means so much to him, and I need to get it together and take care of both my babies. She is what is keeping him strong,” she said.

A new baby sister is just one of the things Callen is looking forward to during the summer as he hopefully finishes up his last round of chemotherapy. “He’s obsessed with swimming,” said Tori. His beloved trampoline had to come down after his diagnosis, and they didn’t think he would get a summer. But since he’s doing so well now, Tori is hopeful he’ll be able to do the activities he loves most as a “free man” this summer. Which, she said, means jumping into the pool face first.

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