SPRINGFIELD – Hearing that anyone has cancer is difficult, but few things are as troubling as a parent learning that their child has cancer.
The good news for young cancer patients and their families is that research over the years has helped to turn children's cancer from a virtually incurable disease some 50 years ago, to one which now exceeds a 75 percent cure rate.
September is National Childhood Cancer Awareness Month, bringing attention to the estimated 13,500 new cases of pediatric cancer diagnosed each year in children and adolescents. About one-third of childhood cancers are leukemias. After that, brain tumors are the most common solid tumors, followed by less common neuroblastomas, Wilms tumors, and sarcomas involving the muscles and bones.
"We see families who travel from all over western Massachusetts for treatment of what we refer to as benign hematology blood disorders, such as sickle cell anemia and thalassemia, to more serious and intense childhood cancers ranging from leukemia to brain cancer," Dr. Satkiran Grewal, chief of Pediatric Hematology/Oncology at Baystate Children's Hospital, said.
Most treatment of childhood cancers today involves standardized protocols – with a young child being treated in one part of the country for a particular childhood cancer receiving the same treatment as another with the same cancer elsewhere – involving a combination of chemotherapy, surgery, and radiation.
While not every child receives all three therapies, most children will undergo some chemotherapy, while others will have their tumors surgically removed and will be closely watched afterward, Grewal noted.
While learning your child has cancer can be a terrifying experience for parents, it is not a lonely, enduring journey that families must go through on their own. In addition to the support of doctors, nurses and other caregivers, child life specialists at Baystate Children's Hospital help children and their families understand what is happening through play, support and education.
"Kids are often anxious about their stay in the hospital. They're nervous about what is going to happen to them, and fearful of painful procedures they may have to undergo. We're there throughout the entire process – for some from the very moment they learn about their child's cancer diagnosis – to provide emotional support for families and to come up with the best coping strategies for kids, parents and siblings as they face this new health crisis together," Betsy Arseneau, child life specialist, said.
According to Dr. Matthew Richardson, part of the three-member pediatric hematologist/oncologist staff at Baystate Children's Hospital, "one of the greatest success stories in medicine today is the improvement of childhood cancer rates."
"Research also helps to chart the best course for future treatment options, often resulting in new therapies and improvements in care for young patients across the country," Richardson said.
Grewal added that cure rates for children's cancer have always surpassed those for adults. But that success is achieved with the use of some highly toxic interventions. Young cancer patients can be at risk for delayed toxicities from treatment resulting in heart disease, lung, bone and even hormonal disturbances that can cause growth delays or reproductive problems. There is also a small chance that some second cancers will result due to the chemotherapy or radiation they received.
As a result, Grewal has developed the Late Effects Clinic at Baystate Children's Hospital, where childhood cancer patients are followed into young adulthood after they complete treatment. As part of the clinic, patients return on a yearly basis for examination and any follow-up care that might be needed. Clinicians carefully record and assess the child's prior treatment and any complications that may have occurred, then use their knowledge, best-practice standards and experience to develop an individualized plan for the patient's long term follow-up care.
Young patients and their families are seen on an outpatient basis at the Sadowsky Center for Children, located within the D'Amour Center for Cancer Care. All of their outpatient care is provided in one location, which includes clinical exam areas, radiation therapy facilities, and a child-friendly infusion suite. The center also includes its own chemotherapy pharmacy and diagnostic laboratory to expedite treatment and complete blood cell results. The on-site procedure suite enables the pediatric hematology/oncology staff to perform many procedures, such as bone marrow biopsies and spinal taps, attended by pediatric anesthesiologists for sedation.
In addition to Grewal and Richardson, the physician staff includes Dr. Joanna Luty. All three are board-certified pediatric hematologist and oncologists. Staff also includes two dedicated physician assistants who are experienced and knowledgeable in the care of kids with cancer, a certified oncology nurse, as well as a range of affiliated specialists: pediatric surgeons highly trained in children's cancer surgery, pediatric pathologists, pediatric radiologists, a social worker, nutritionist, and others.
According to Grewal, they make a "tremendous effort" to ensure patients and families see the same person at all times, whether it's their doctor, infusion nurse, physician assistant, medical assistant or office staff.
"We listen and get to know them. All families are different and react in their own way. Parents are often fearful and have a lot of questions when their child gets a cancer diagnosis. We offer them support and guidance at every step of their treatment," Lisa Martensson, RN, oncology nurse clinician at the Sadowsky Center for Children, said.
"Families get to know one another while their children are receiving chemotherapy and friendships begin. Families also keep in touch with us. I've been here long enough that some of the kids I've treated are now in college. And, it's the best feeling in the world when they stop in to see you ... I've had cookies baked for me," she added.
While facing cancer is a different journey for each child, Richardson said that most pediatric cancer patients will face periods of isolation from friends and classmates while away from home and school to undergo treatments in the office or in the hospital.
As for older kids of middle- or high school-age, he noted it is often harder on them dealing with a diagnosis, which they are old enough to understand, that could be potentially life-threatening.
"While we have become better at managing the side effects of treatment over the years, kids still have to deal with getting fevers, upset stomachs, and the loss of their hair from chemotherapy. We've also gotten better over the years in minimizing the discomfort of potentially painful procedures such as bone marrow tests and spinal taps, which are now routinely conducted under anesthesia," Richardson said.
For more information on Baystate Children's Hospital, visit baystatehealth.org/bch, and for more information on the Baystate Regional Cancer Program visit baystatehealth.org/cancer