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Tales of surviving a diagnosis of childhood leukemia

  • Giselle Ohm, 6, plays at her home in Northampton Wednesday.<br/>JERREY ROBERTS
  • Giselle Ohm, 6, plays at her home in Northampton Wednesday.<br/>JERREY ROBERTS
  • Giselle Ohm, 6, plays at her home in Northampton Wednesday.<br/>JERREY ROBERTS
  • Giselle Ohm, 6, plays at her home in Northampton Wednesday.<br/>JERREY ROBERTS
  • Joy and Hun Ohm with children Ana-Lucia, 3, Giselle, 6, and Chiara, 4 months, Wednesday at their home in Northampton.<br/>JERREY ROBERTS
  • Joy and Hun Ohm with children Ana-Lucia, 3, Giselle, 6, and Chiara, 4 months, Wednesday at their home in Northampton.<br/>JERREY ROBERTS

When Giselle Ohm of Northampton was 3, a routine blood test at her annual wellness visit revealed an abnormally low white blood cell count.

The pediatrician asked if she had any other symptoms such as bruising or fatigue that might indicate cancer, but her parents, Joy and Hun Ohm, said no, she seemed fine.

The doctor suggested the results were perhaps from a recent virus, but when the tests were repeated a few weeks later, results were the same. Giselle still was feeling well, but after two months of the same test results, the pediatrician referred his young patient to Baystate Medical Center in Springfield for a bone marrow aspiration to unearth the cause of the abnormalities.

Giselle’s mother, Joy, an editor for a nonprofit, and father, Hun, a lawyer, were not overly worried: They were told there were several treatable blood disorders that could skew the blood counts. Doctors said leukemia (cancer of the blood cells) was the least probable.

But a week before the scheduled bone marrow aspiration, things changed rapidly. Giselle began complaining of severe leg pain and was unable to walk. Then the bone marrow aspiration revealed she had acute lymphoblastic leukemia (ALL), the most common form of childhood leukemia.

Therapy begins

“Of course, we were shocked to learn the test results,” Joy said. “We had been dealing with the low counts for two months, but it never occurred to us that the worst-case scenario would play out.”

Giselle was admitted to Baystate Children’s Hospital, where she spent one week undergoing tests and the first of three phases of treatment for her leukemia, which involved outpatient treatment and some hospital stays. ALL can be rapidly progressive, Joy said, requiring immediate treatment. That week began a difficult, more than two-year treatment of chemotherapy that ended last spring.

The Ohms, who relocated to Northampton from New York City 6½ years ago, decided to get a second opinion at a larger medical center: Boston Children’s Hospital. But doctors there told them that the treatment for childhood ALL was standard at hospitals across the country and agreed Giselle would receive optimal care at Baystate Children’s Hospital, which is part of the Baystate Regional Cancer Care Program.

Treatment is “a long, arduous process,” said Matthew Richardson, one of three pediatric oncologists who treated Giselle. “Thankfully, they are not in the hospital that much, only during the first few days during induction.”

Most children with leukemia do not require surgery and don’t need radiation. Radiation therapy is only given if a child is at high risk of relapse occurring in the brain or central nervous system. If a patient develops fevers, they may have to be admitted to the hospital.

Joy said Giselle tolerated the chemotherapy fairly well. In the first month, she developed severe bloating, hunger and crankiness from a steroid that was administered and then her hair fell out.

“We knew it would happen and were pretty nonchalant about it,” Joy said. “She gathered up her hair and put it under a pillow and the ‘hair fairy’ came and gave her some nail polish and a scarf.”

Joy said she and her husband tried to normalize the experience as much as possible by talking about other acquaintances who had different kinds of cancer.

“The way she understood it was that her blood was sick and that doctors had to give her medicine to help her blood become healthy again,” she said.

Giselle, who was in preschool at the Northampton Montessori School, left school in mid-December, but was able to return the following September. At the time, Joy was on maternity leave with her baby, Ana Lucia, and was able to extend her leave a bit before returning to work part-time while a babysitter cared for her children. Joy, who telecommutes for a New York company, was able to take another two months off during one phase of Giselle’s chemotherapy.

Joy said that despite her initial impulse to go to a larger medical center, she and her husband were pleased with the treatment at Baystate Medical Center. Recognizing the physical, emotional and financial challenges of childhood cancer treatment, Baystate offers a range of services for families, including child life specialists, social workers and financial counselors.

Easing fears

“The pediatric oncologists were all wonderful and the nurses were great,” said Joy. “They made going to the clinic actually kind of fun. They really know how to relate to children.”

Now 6, and finished with chemotherapy, Giselle said she enjoyed watching movies and doing activities such as arts and crafts in the treatment area. “I liked to drink the juice and eat all the yummy stuff they had there,” she said.

“The job of the child life specialists is to make the children as happy as possible,” Joy said. “They come in with toys and videos and they have a large play room with lots of games and blocks.”

Giselle remembered the play kitchen and a visit from Santa when the hospital celebrated “Christmas in July.”

Lisa Martensson, a pediatric oncology nurse at Baystate, says most children are nervous when first going in for chemotherapy, blood transfusions, antibiotic treatments and other care, but the staff works hard to ease their fears.

“We see these kids over a long period of time and we really establish a relationship with them,” she said. “Eventually, they get pretty comfortable and get settled in and OK with what is going on and lose a lot of that fear over time.”

Martensson said little things go a long way in helping children and teens deal with the treatment: lollipops for a teenager who hated the smell of the clinic during his chemotherapy, for instance. Martensson said she administers a lot of “pre-medications” that help control symptoms such as nausea and diarrhea in young cancer patients.

After treatment

A child with leukemia is considered to be in remission when there is no visible detection of cancer in the blood and there is a return of normal bone marrow function.

Giselle has been off chemo since last April and goes to Baystate every month for blood checks in the first year of remission. Gradually the checks are scaled back; by the fifth year after treatment, a child will be checked for a return of leukemia once a year.

Richardson said after five years of remission, the chance of leukemia returning is very small. At that point, doctors continue to monitor children for possible longterm side effects from chemotherapy, checking their heart, liver and kidney function and assessing them for possible learning disabilities.

The Ohm family is optimistic about Giselle’s remission and the potential development of other problems from chemotherapy down the road. Joy Ohm had another baby girl, Chiara, four months ago, and the couple decided to preserve her umbilical cord blood in case Giselle relapses.

The family credits the Montessori School community in Northampton for helping during their ordeal. Friends at the school set up a Lotsa Helping Hands Web site, for instance, where people volunteered to make the family dinner a few nights each week in the early days of Giselle’s treatment.

“I would say the best thing to come out of this was the development of friendships with people we barely knew before,” she said. “Giselle had only been at the Montessori School for three months when she was diagnosed. The community there was very supportive.”

Today, Giselle leads a “completely normal life,” her mom said.

Dr. Richardson said that while patients credit the doctors and other hospital staff for helping them recover, the patients and their families deserve credit, too.

“At the end of treatment, people always say ‘thank you,’ but really, I like to say, ‘you guys are the ones who did all the hard work and you are the ones that have to live with the treatment.’ ”

Related

Patients must monitor longterm effects, too

Monday, November 5, 2012

Recent studies show that childhood leukemia now has a cure rate of more than 90 percent and improved survival rates are attributable to clinical trials that help doctors learn the best drugs and doses to treat kids with ALL, better supportive care, improved nutrition, the use of antibiotics, blood transfusions, and more. In the 1990s, the five-year survival rate was …

Treating leukemia

Monday, November 5, 2012

Leukemia is the leading cancer among children, says Matthew Richardson, M.D., a Baystate pediatric oncologist. Each year, about 13,500 new cases of pediatric cancer are diagnosed nationwide in children and adolescents. About one-third of childhood cancers like Giselle’s are leukemias. ALL, which can appear in adults and children, accounts for about 75 to 80 percent of childhood leukemias. After leukemia, …

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