Lucas was a calm and happy baby and toddler. His mother, Karen, describes him as “super chill, content and full of energy.” So, when he woke up sobbing one night when he was 3, she and her husband, Mike, knew something was wrong. He told them, “My bed hurt me.” His breathing was labored, and he had pain in his lower back.
Worrisome pain and fever
An X-ray at the local emergency room suggested the problem was simply constipation. They were sent home with laxatives. But the next day the pain continued and he developed a fever. They took Lucas to his pediatrician, who said to give it a little more time.
Lucas was still in pain the next morning. “It was so out of character,” Karen says. “He just didn’t look right. I told Mike, ‘We need to go to CHOP.’” The pediatrician called to check on Lucas and agreed.
Karen and Mike took Lucas to the Emergency Room at Children’s Hospital of Philadelphia. He endured a long day of tests and examinations by doctors with different specialties. A blood test showed his hemoglobin levels and white cell and platelet counts were just outside the normal range. That prompted a more careful look at his blood, which revealed the presence of blasts.
“Your son has leukemia.”
“They told us, ‘Your son has leukemia,’” Karen remembers. “By nine that night we were on the Oncology floor. It was surreal. I was in shock.”
The caring expertise of the doctors and nurses they dealt with that day and the days that followed helped get them through. “Their communication was so clear,” Karen says. “Such a good balance of compassion and facts. They would explain things and wait until our brains had caught up before telling us more.”
Tests showed the leukemia had not spread to his nervous system.
ALL treatment with chemotherapy
Karen and Mike met with Vandana Batra, MD, an attending physician in the Cancer Center at Children’s Hospital, who explained the diagnosis and treatment plan. Lucas had acute lymphoblastic leukemia (ALL), one of the most common forms of leukemia found in children, and one with a high cure rate. She explained that chemotherapy is the protocol. The family agreed to the treatment plan, and an hour later Lucas was on chemotherapy.
Lucas responded well to treatment. He went home with a plan for ongoing chemotherapy at CHOP’s Specialty Care & Surgery Center in King of Prussia, which was more convenient for the family than the Main Hospital in Philadelphia.
At King of Prussia, Lucas’ multidisciplinary medical team includes Julie Stern, MD, and Tracey Jubelirer, MD, attending physicians in the Cancer Center, Anne Grifo, RN, MSN, CRNP, an advanced practice nurse, and Karen Smith, RD, a registered dietitian. His chemotherapy schedule varied with the stage of the protocol. He came in every other day at first, then dropped to once a week, then resumed more frequent treatments.
Encouraging a sense of control
“It was confusing to him,” says Karen. “He had doctor days, school days and mommy days. I worked on giving him a sense of order to it all. I’d tell him the night before what was going to happen the next day. I also concentrated on all the things that were pleasant when we went to CHOP: That we would see Kim at the front desk; that he would stand on a scale; that he’d have time in the play area and with the child life specialists.”
During treatment, Lucas was both brave and patient. He would sit on his hands, hold his chin up and look at the clock. Outwardly, he seemed to be taking the disease and the treatments in stride, but Karen wanted to make sure he had outlets to express his emotions in case he was experiencing any trauma. She thought yoga might be helpful and found a teacher who would work with him. She and Mike also did rock climbing with him. It was a physically challenging activity with a strategic element. He enjoyed it and it helped boost his confidence.
Dr. Jubelirer was aware of Karen’s concerns for Lucas’ emotional health and shared her interest in yoga as an element in his care plan. She had been working on starting a yoga program for the kids in treatment at King of Prussia as part of CHOP’s Integrative Health Program. Integrative health is care that focuses on the whole person. It looks for opportunities to pair mainstream medicine with complementary health practices.
Yoga at CHOP
The timing was ideal. A yoga instructor began offering Tuesday morning sessions for anyone in the chemotherapy clinic interested in participating. She would set out mats right in the middle of the clinic’s open area.
Lucas was drawn to it. He’d already had a couple of yoga classes, so he was comfortable with the idea. And the instructor had an informal, flexible approach and tailored the sessions to whoever joined. It didn’t matter whether they were 3 years old or 14, everyone felt welcomed. “She is wonderful,” says Karen. “Kids’ minds go off in different directions. She lets Lucas be who he is while getting exposure to the lesson.” At 4, Lucas is often a superhero, Captain America, Spiderman or Ironman, and those characters tend to find their way into the yoga sessions.
“Yoga gives us another reason to go to CHOP that’s not an uncomfortable treatment,” says Karen.
“He learns techniques of breathing and relaxation and it calms him. It puts him in a relaxed state. It’s helping him to feel more in control when so much of his disease and his treatment is out of his control.”
Karen has also relied on another aspect of the Integrative Health Program: nutrition counseling. Lucas has remained fairly healthy through his treatment. He lost his hair, but he has not gone through extremes of weight gain or weight loss. But Karen knew that many kids on chemotherapy end up with feeding tubes and she did not want that for Lucas. So when he started losing weight during one phase of his treatment, she met with a nutritionist at King of Prussia.
“She gave me ideas that would have taken me weeks to find on my own,” says Karen. “It was reassuring to be able to rely of CHOP for the guidance, rather than going outside and guessing about how the nutrition plan would interact with the chemotherapy.”
Superhero on a bike
Karen’s approach to helping Lucas feel in control of his life, paired with support from CHOP, seems to be working. Lucas is a happy child who appears unaffected by his medical ordeal. When he recently had to go in for a lumbar puncture, he asked Karen, “Why do I have to go to the doctor? I’m not even sick.”
Lucas uses an array of superhero pajamas, along with capes and masks, to transform himself into his hero of choice. He rides a Spiderman bike without training wheels, plays with dinosaurs, and uses his imagination to tell and act out stories. “He’s always moving,” says Karen. “And always telling a story.”
He is a year and a half into the three-and-half year chemotherapy protocol. He’s done with the most intensive treatments and is now in the maintenance phase.
“I feel extraordinarily lucky to have CHOP caring for Lucas,” says Karen. “Not just because they were so thorough in making the diagnosis and so good with the treatment, but because they are actively pursuing these other practices. They are incorporating them into the standard treatment.”
“I have the luxury of working with medical experts who care about my son as a whole person. They understand that these complementary practices affect the way kids feel, which affects the way they heal.”