LLU&MC Scope, Autumn 1997, Children & cancer

Antranik A. Bedros, MD, pediatric hematology/oncology, spends a lighthearted moment with Kevin Fox (left), a Children's Hospital patient, and his brother, Justin. A special guest on the unit was "Wild Wing," mascot of the Mighty Ducks of Anaheim hockey team.

"Your child has cancer." These are four of the most frightening words a parent can hear.

At Loma Linda University Children's Hospital, many of the hospital's most seriously ill children with cancer or diseases of the blood are under the constant and concerned care of Antranik A. Bedros, MD, FAAP.

As Dr. Bedros, a specialist in pediatric hematology and oncology, evaluates each child, he begins a journey with them that can last for many years.

"I have seen Dr. Bedros take care of children with cancer," says Cyndee Pelton, RN, CPON, "who then later bring children of their own to meet Dr. Bedros."

Treatments for cancer are often invasive, and sometimes scary or painful, as the youngsters go through chemotherapy, bone marrow transplants, transfusions, and sometimes surgery. But Dr. Bedros' young patients love and trust him.

"I've seen kids run as fast as they can up to Dr. Bedros," exclaims Ms. Pelton, "and grab his legs in a huge hug--that's all they can reach!"

When Dr. Bedros provides the best in care for his young patients, two words are foremost in his mind.

"Two words we use often in pediatric oncology," he says firmly, "are 'curing' and 'caring.' If we cannot cure the child, we care for them, treating the symptoms, making them comfortable, and ensuring that they are not suffering."

"As Dr. Bedros works with hundreds of critically ill children, tragically, some of the patients do not win their fight against cancer," confides Jan Halverson, a pediatric oncology nurse practitioner with Children's Hospital. "Dr. Bedros handles these cases with empathy, helping the parents maintain a sense of control even under the most tragic circumstances."

As he wages the war against his patients' diseases, Dr. Bedros uses a multidisciplinary approach--calling upon dozens of highly trained health-care professionals to assist his patients and their families with information and support.

Dr. Bedros relies heavily on what he calls his "team," which consists of hospital staff: primary nurses, nurse practitioners, child-life specialists, social workers, hospice caregivers, and chaplains.

In the community, groups such as the Sickle Cell Organization, Make-A-Wish and Starlight foundations, and others are waiting to use their skill and resources to aid the youngsters and their families.

According to Olga Kalbermatter, a Children's Hospital pediatric-oncology nurse practitioner, Dr. Bedros trusts and depends on his team members. "This allows Dr. Bedros to see a large volume of patients in a short amount of time," she says, "while concentrating on the important components of his practice."

"Dr. Bedros strives for a balance, however," she emphasizes. "He knows when to stand back and when to step in."

As an example, members of one of the above groups work autonomously. "But if Dr. Bedros doesn't like how we are handling a situation," says a staffer, "we hear about it immediately!"

Following are some of the areas which provide assistance to children diagnosed with cancer or blood diseases.

Health-care facilities throughout the country are joining the war against childhood cancers, and the results are beginning to be seen.

"Today," comments Dr. Bedros, "more than 70 percent of children diagnosed with previously uncurable cancers can be cured."

Children's Hospital is part of the Children's Cancer Group (CCG), an international research organization supported principally by the National Cancer Institute, which founded CCG in 1955.

It is devoted to the development of new treatments and cures for cancers of infants, children, and adolescents. The group also conducts research on the biology of these cancers, their causes, and provides long-term followup of cured patients into adult life.

As a CCG investigator, Dr. Bedros joins more than 2,500 pediatric cancer specialists in 115 medical centers in the United States, Canada, and Australia, in their quest for cures to many devastating cancers.

Currently, CCG conducts more than 60 concurrent studies of leukemia, brain tumors, and other principal cancers of children.

"If a child comes into Dr. Bedros' care," states Becky Montalvo, CCRA (certified clinical research associate), clinical research manager, Loma Linda University Cancer Institute (LLUCI), "and fits into a protocol of a research study that is ongoing, we offer the child--and the parents--the opportunity to be placed on the study." She aDDS that at Loma Linda, the child is given input into the final choice regarding this part of their treatment.

Linda Conforti, CCRA, clinical research coordinator, LLUCI, reports, "Our association with the Children's Cancer Group allows us to provide our pediatric cancer patients with the opportunity to receive the standard in care and treatment, as defined by CCG."

Results of the studies are published in peer-reviewed journals, and are made available to physicians throughout the world who treat children with cancer.

Though the child may not have a choice about being in the hospital, there is one place where he or she knows that no medical procedures will be performed--in the playroom.

In charge of the colorful, kid-friendly playroom, with its toys and games, is the child life program.

Child life specialists Dina Evans, MA, and Judi Welch teach the children about their illness. As the specialists use art and therapeutic play to help the children understand what is going on inside and around them, and what will happen while they are in the hospital, the specialists focus on the child's feelings.

Child life provides a support group called Teen Cancer Connection, which meets the second Tuesday of every month It is comprised of inpatient and outpatient adolescents who get together to talk about their feelings, fears, and concerns.

School integration is offered to families when a patient is able to return to school. A child life specialist and clinical nurse specialist, Linda Juse, RN, ms, visits the child's classroom. Presentations include explaining cancer and treatment, hair loss, and discussing misconceptions the classmates may have.

"We always stress that their classmate may have changed on the outside," says Ms. Evans, "but that they are still the same inside."

The child life program also provides "Thumbs up, Sophie," trophy parties for young cancer patients who have completed chemotherapy.

"The trophy party came about because of a 9-year-old child named Sophie," explains Ms. Evans. "Though Sophie eventually did not survive her bout with cancer, she'd always answer the question 'How are you doing?' with a big, 'Thumbs up.' So her family has remembered her by giving a 'Thumbs up, Sophie' trophy to each child who completes chemotherapy at the Children's Hospital."

The parties are held quarterly and are complete with cake, snacks, and a magician.

Dolores Cornejo, LCSW, a medical social worker with Children's Hospital, has dealt with Dr. Bedros on numerous cases.

"Dr. Bedros is highly aware of psychosocial issues of children and their families after a diagnosis of cancer or a chronic blood disorder is made," she observes.

"He wants families and children to have their special emotional and social issues acknowledged and addressed," she says, "and for them to take full advantage of the resources available to help them."

A medical social worker is present during each meeting where a change in the patient's condition will be discussed--for example, if parents of a patient who has been in remission are told that their child's cancer has returned.

Ms. Cornejo has also seen the joy in a child's eyes as a wish has been granted through Make-A-Wish or Starlight foundations. A memorable wish granted to a terminally ill child was the simple wish of a back yard to play in. With the Make-A-Wish Foundation's help, a house was rented, and Ms. Cornejo was able to help make the child's dream come true.

"As I have worked with Dr. Bedros," says Ms. Cornejo, "I have seen that he makes a sincere effort with respect to the patient and family needs. There is not just one person who can meet all of the needs a catastrophic illness creates for a family unit, and clinical social workers are here to help."

Once a diagnosis has been made and treatment started, Dr. Bedros refers families of patients with Sickle Cell Disease to the Sickle Cell Organization of the Inland Counties.

The organization provides counseling, home tutoring, summer camp, and holiday activities such as Thanksgiving and Christmas baskets, and other endeavors. The organization also performs free genetic testing on individuals to detect the presence of the sickle cell gene.

In addition to patients at Loma Linda, Dr. Bedros shares his skills and expertise with non-Loma Linda physicians, serving as a consulting hematologist with the Sickle Cell Organization.

According to Joyce Williams, a sickle cell counselor-coordinator with the organization, Dr. Bedros "provides phone consultation with other physicians, some of whom are treating patients with the disease but who are not specialists in the field."

As these highly trained and experienced groups work together to treat critically ill children, caring is always their ultimate goal.

When asked what is unique about pediatric oncology and hematology at Loma Linda, Dr. Bedros focuses on his staff.

"There are many places a patient can go," he emphasizes, "to receive the medications and treatments we offer. I believe that what makes us different is that we have a team of incredibly caring people. As families see that we are doing our best, and sense that we really care about them, that is why they choose to place their children's care in our hands."