Children with cancer, Part 3: Transitioning from patient to survivor
John Cloer was three months shy of his third birthday in 2004 when he was diagnosed with acute lymphoblastic leukemia. For the next three and a half years, he received chemotherapy at City of Hope, finally obtaining long-term remission.
His parents Bill and Gina, along with John and his younger brother Steve, recently sat down to reflect on that experience, sharing tips for family members and friends of children with cancer, as well as advice for parents of children with cancer. Here, they and City of Hope pediatric nurse Karla Wilson, R.N., M.S.N., discuss the sometimes difficult transition from treatment to survivorship.
In this third of a three-part series, they describe the transition from patient to survivor.
Some of the cancer treatments that save children’s lives also may produce life-altering side effects that don’t materialize for years.
During the Cloers’ annual visit to City of Hope’s Childhood Cancer Survivorship Program, Wilson reviews John’s medical progress, and reminds his parents about conditions they’ll need to monitor.
When alerting patients that they may be prone to future therapy-related conditions, Wilson said she always tries to drive home one message above all: Just because survivors are at risk for a condition doesn’t mean they’ll necessarily develop it.
As patients and their families transition from the hospital to home, and back to school or jobs, there’s a fine line between vigilantly monitoring potential problems – and obsessing about every twinge and cold.
The goal is to help a youngster grow into a normal adult who used to have cancer.
The Cloers have found that perfect balance, said Wilson, nurturing John through the struggle, keeping him focused and moving confidently forward.
Children like John who were treated for acute lymphoblastic leukemia now have a greater than 90 percent cure rate, said Wilson. But there still are conditions John and his parents need to monitor.
For instance, John underwent anthracycline chemotherapy, making him more susceptible to future cardiac problems. Though he received a low dosage, Wilson advises him to stick to aerobic exercises like running, swimming and biking, and avoid anaerobic activities like weight lifting that would put undue pressure on his heart.
Like many children undergoing cancer treatment, John was given steroids. Used to help eradicate leukemia cells, steroids also can bloat a child, giving them insatiable food cravings, said Wilson. (“It was horrendous, like an eating disorder,” recalls Gina of John’s experience.) These cravings may linger, and combined with a sedentary lifestyle, may set patients up for obesity.
Steroids can also speed the development of premature cataracts. John has been diligent about wearing sunglasses to protect his eyes from the damaging effects of ultraviolet light in sunlight.
Children who underwent intensive chemotherapy may be more prone to developing cognitive problems.
“John is really a bright kid but what we realized is that maybe his naturally high IQ has been sort of a mask for some difficulties,” said Gina. “He tests well, writes well and excels in math, but on occasion, his brain races ahead and he has a hard time verbalizing what he’s thinking because everything’s rushing at once.”
Gina remembers Wilson explaining it to John this way: “If you have a road that’s smoothly paved and newly redone, you sail right along that road. You need to think of your brain pathways as having some potholes that make thought processes more disjointed and difficult.”
“Karla said that kids who are naturally very bright may struggle with this more,” said Gina. “They know they should be able to retrieve information more easily. I think John has to work harder.”
“John knows where he wants to get intellectually but sometimes can’t understand why it’s such a disjointed process to get from A to B,” added Bill. “It’s compounded because John is a perfectionist deep down inside. His personality won’t let him say, ‘It’s close enough.’”
Sometimes childhood cancer survivors may fail a test in school not because they didn’t know the information, but because they couldn’t retrieve it within the allotted 30 minute time for taking the test. “They may be viewed as not caring about the work, or not trying, and may fall between the cracks,” said Wilson.
The cognitive problems may be traced to survivors missing a lot of school, and lacking the fundamental building blocks to help them learn and retain information. They also can be caused by interthecal therapy, like John had, in which doctors help chemotherapy pass the blood-brain barrier by injecting it directly into the spine. Side effects may range from seizures when the children are undergoing treatment, to “chemo brain,” affecting the speed with which they can process information.
Meanwhile, as John continues to persevere, and bring home straight A's, he speculates about his future career (soldier, scientist, doctor or website designer are the current contenders).
In a 2008 interview, when John was poised to make his White House T-ball debut, Gina offered encouragement to other families reeling from diagnoses or treatment.
“Life is more challenging, but it can also be sweeter,” she said. “Health can absolutely be restored.
“That’s the biggest lesson.”
Part 2: How parents can help their kids
Learn more about acute lymphoblastic leukemia treatment at City of Hope, internationally recognized for its treatment of leukemia and other blood disorders.
Learn more about City of Hope's Center for Cancer Survivorship, which provides specialized long-term, follow-up care for cancer survivors.
Also, read John Cloer's story in his own words.