Johnsburg girl, 3, gets cutting-edge cancer treatment, from her pink backpack

Kinsley McLamore is a great example of how a family can choose to respond to cancer treatment with positivity and an active lifestyle, said Dr. Grace Chandler, one of the physicians treating the Johnsburg 3-year-old for acute lymphoblastic leukemia.

“We see her weekly and she is a happy, playful little girl who is living her life, attending school,” said Chandler, a pediatric oncology fellow at Ann & Robert H. Lurie Children’s Hospital in Chicago. “We really do encourage the patient and the family to resume some normalcy, as much as possible, during treatment.”

Kinsley is receiving a treatment that allows her more freedom by not requiring daily visits to the doctor’s office for infusions. She has a port in her chest with tubes leading into a backpack. Inside that backpack – pastel pink with a plush doll attached to it – is a pump, feeding her body blinatumomab, a immunotherapy drug approved on June 14 by the FDA for use in children and adults with a certain type of leukemia.

That drug should help Kinsley’s own immune system fight the cancer by targeting a molecule on the leukemia cells, Chandler said.

For the next two weeks, Kinsley gets a break from the immunotherapy pump. Her port was sealed shut, allowing her to go swimming in the family pool and at the family cabin in Wisconsin for the first time since she was diagnosed on March 21.

Her parents, Rob and Kelsi McLamore, first noticed something was wrong on President’s Day weekend. With her cousins at the family cabin, Kinsley hurt her ankle but it didn’t seem to heal, Kelsi McLamore said. She had Kinsley skip a week of gymnastic classes to see if it would get better, but then she had a fever and congestion and the foot was still bruised.

Finally, after some back-and-forth with pediatricians and changing doctor’s offices, a full blood panel was ordered. That pediatrician told them: “You need to got to Lurie’s today,” Rob McLamore said.

It was Lurie’s that gave them the leukemia diagnosis, he said. Kinsley got there on a Tuesday and began chemotherapy by Friday.

“That was the toughest part, to let her go when they were taking her for surgery” to have the port implanted, Rob McLamore said. “I heard the word cancer and that she is dying.”

But the actual prognosis for Kinsley is much brighter than that.

“There is a plan, and the outcome is quite favorable,” Kelsi McLamore said. But it is also a long plan. Kinsley’s treatment is expected to take 2½ to 3 years years. She will also be a part of Lurie’s longterm followup, to see what affects the treatments have on her later in life.

The Survivors Taking Action and Responsibility, or STAR, clinic at Lurie’s follows childhood cancer patients beginning five years after their initial diagnosis.

“She will as some point be an adult survivor of childhood cancer,” Dr. Sara Zarnegar-Lumley, another Lurie oncologist, said. “With longterm surveillance ... we will see the longterm outcomes of the therapies as well.”

One thing research is showing is that those who stayed active during treatment often responded better, Zarnegar-Lumley said.

Swimming has always been Kinsley’s outlet, Kelsi McLamore said. As they watched the Olympics, she’d get out to the family pool and stand on the diving board, but wasn’t able to get in because of the treatment. The plan was that once her port was sealed, there would be cannonballs aplenty.

“There is so much personality in her, and it is so wonderful to see her week after week being her spicy, happy self,” Chandler said. “We expect her to do very well.”