This is an article that will be published this fall.

Taking the Long View by Lisa Brihagen, copywriter

Higher cure rates and fewer long-term effects from treatment are just two of the benefits adolescents and teenagers receive when their cancer is treated at pediatric medical centers. Among pediatric institutions, Children’s has some of the best survival outcomes in the nation.
When Mary Elizabeth Sierra-Lanham was having trouble seeing the blackboard at school, a routine eye exam showed that the optic nerve in her right eye was very swollen. A string of visits to different specialists led to an MRI that finally explained the problem – a lump in her head was pressing against a major vein.

That was when mom Sally Lanham brought Mary Elizabeth to Children’s where a second MRI and a blood test confirmed that her daughter had Acute Lymphoblastic Leukemia (ALL), a type of cancer where malignant white blood cells or "lymphoblasts" are overproduced in the bone marrow and can spread into the bloodstream and vital organs. ALL accounts for approximately 40 percent of all childhood cancer.

Although Lanham didn’t know it when she switched Mary Elizabeth’s care to Children’s, her decision may have saved her daughter’s life: adolescents and teenagers have a much better chance of beating ALL – more than 25 percent better – when they receive pediatric cancer treatments rather than those intended for adults. Separate studies in North America, France, The Netherlands and Italy confirm these findings.

"We’ve learned from years of research that teenagers have far fewer relapses when their treatment is longer and more aggressive than the less rigorous treatment that middle-agers and seniors receive," says pediatric oncologist Dr. Doug Hawkins. "Yet, we still see medical oncologists out in the community treating 15 to 21 year olds with the exact same protocols given to people who are decades older."

Adolescents and teens not only benefit from cancer treatments developed specifically for their age group, they also thrive in children’s hospitals where teams of skilled providers focus on their long-term health concerns and the unique needs of their entire family.
Reducing the risks

When a persistent cough and mysterious itchiness around the ankles sent 16-year-old Matthew Hale to his primary care physician, an X-ray revealed a tumor in the lymph nodes in his chest. Heeding the doctor’s advice, the Hales drove to Children’s that evening where members of the cancer team met them in the Emergency Department and began a series of tests to pinpoint the nature of the tumor.

After a biopsy, clinical oncologist Dr. Blythe Thomson broke the news that the tumor in Matthew’s chest was Hodgkin lymphoma, a type of cancer that can develop anywhere in the body’s lymph system and spread to almost any tissue or organ.
Matthew was surprised when Thomson spoke directly to him rather than to his parents. But it’s a strategy used by Thomson and her colleagues on the cancer care team that builds trust with teens and empowers them to take responsibility for their care.
"I was in shock about the diagnosis, but glad my doctor talked to me with my parents just listening," explains Matthew. "I prefer that."

The good news for teenagers with Hodgkin disease is that cure rates are well over 90 percent. However, the treatment, which includes both chemotherapy and radiation, can leave teens with serious long-term effects, such as infertility, secondary cancers, or damage to the heart, lungs and other organs that won’t appear until 10 to 30 years down the road.
"I’m always thinking about what life will be like when the kids get older and trying to find ways to make the treatments less toxic right now," says Dr. Debra Friedman, an expert on Hodgkin lymphoma who currently leads several national clinical trials aimed at reducing the long-term effects for teens who survive the disease.

Her research findings are lessening the risks of toxicity for those currently in treatment. For example, some teens whose Hodgkin disease responds quickly to chemotherapy no longer receive radiation. Those who respond more slowly to the chemotherapy still receive radiation but get a less aggressive type of chemotherapy that has fewer side effects.
For risks that cannot be mitigated, the cancer team works with patients to plan around them. For instance, teenage boys are encouraged to go to a local sperm bank so they’ll have the option to father children later in life even if their treatment leaves them sterile. Most parents, says Friedman, strongly advocate the trip.

A healing environment

Lanham keeps a Web journal that chronicles her family’s long journey with ALL – Mary Elizabeth, now 14, has been in treatment since August 2004. Lanham’s weekly entries chronicle day-to day details, including foods that Mary Elizabeth can tolerate, juggling schedules to get to appointments and her daughter’s uncommon reactions to medications. Her journal reflects a truth about childhood cancer that is well understood by clinicians in pediatric institutions: when a child – even a teen – is sick, the whole family is affected.

A host of specialists at Children’s helps families cope with all aspects of the cancer experience. Physicians and nurse specialists work with patients and families to teach them about the disease and develop a plan of treatment. Child life specialists, social workers and chaplains support patients, parents and siblings throughout the emotional journey.

"There’s a safety net of resources that’s available," says Katherine Hall, whose 20-year-old son Brandon decided to transfer his care for Hodgkin lymphoma from a community oncologist to Children’s. "When Brandon told his nurse practitioner about some nutritional issues he was having, she paged a nutritionist who was able to meet with Brandon immediately and give him suggestions tailor-made for a young man his age."

Mary Elizabeth recalls the MRI tech who played music and chatted with her during her first procedure at Children’s – the visit that confirmed her cancer diagnosis. "I had an MRI at another hospital and it was scary," says Mary Elizabeth. "They left me alone and no one checked on me. At Children’s, the staff tell stories and we laugh. I’ll miss them when I’m done with treatment."

Surviving is just the first step

The experience of having cancer – and being treated for it – can have lasting physical and emotional consequences. The Institute of Medicine, part of the National Academy of Sciences, recently recommended that survivorship programs be a focus of care for all cancer survivors.
Friedman directs one of the only survivorship programs in the country open to adolescents and teenagers who have survived childhood cancer. The program provides after-treatment clinical care and referrals, patient education, access to the most current cancer research and opportunities to participate in research to help others.

So in addition to the hugs and congratulations patients get from staff on the day that their cancer treatment is finally done, they also get a one-page piece of paper that may be more important than their high-school diploma. It is a treatment summary that gives the exact details of their therapy, what is known about long-term side effects, recommendations for future care and an invitation to Children’s cancer survivorship program.

"By 2010, one in every 250 young adults in the United States will have survived a childhood cancer. They could potentially live another 60-plus years," says Friedman. "As pediatric oncologists, part of our job is to look beyond the cure and think about their immediate post-treatment needs as well as those that will extend throughout their lives."

Sidebar: I love you, stay away!

Younger cancer patients tend to flourish with the intense attention and specialized play therapy they receive during their treatment. But teens can flounder when their normal trajectory toward self-reliance is cut short with frequent hospital stays and health concerns that isolate them from peers. Child life specialist Katie Tinholzen is a child and adolescent development expert who helps pediatric cancer patients of all ages cope with the hospital experience.
Tinholzen supports teens in their struggle to maintain control and independence at a time when they must be dependent on parents and health care providers. She encourages journaling, scrapbooking, songwriting and creating art to help teens process what’s happening to them and to make meaning of their cancer experience.

Tinholzen also helps worried parents sort through common coping strategies of teen patients – sleeping to escape or being ambivalent about the future, and trains clinicians to create a culture of respect around teen sensitivities with body image, privacy and communication.

Sidebar: Reaching Out
Northwest families living far away from pediatric cancer care must weigh receiving treatment at home with traveling to Children’s, which has some of the best outcomes for cure in the nation.
"That’s not a choice we want families to have to make," explains Dr. Russ Geyer, the medical director of Children’s Hematology/Oncology Department.

Patients in Alaska receive an initial evaluation at Children’s, then get their treatment from a Children’s pediatric oncologist practicing at Providence Children’s Hospital in Anchorage through a program set up by Children’s, the Alaska Native Medical Center, Providence and the state of Alaska.

Patients living in The Last Frontier receive the very same protocols and rigorous safety standards followed at Children’s with one exception – each step of their treatment plan is double-verified by fax instead of in person. Geyer and his team are working to set up a similar relationship with providers in Montana.

Sidebar: Proven Outcomes, Newest Treatments
Our 30-year involvement in pediatric research studies or "clinical trials" that shed light on how best to treat cancer is a key reason why Children’s survival rates are better than the national average. While only 5 percent of adults participate in clinical trials, more than 95 percent of children with cancer do participate. These clinical trials integrate treatment improvements gained from previous studies while trying therapies to answer new questions.

Children’s helped create – and remains a leader in –the Children’s Oncology Group (COG), a group of 240 pediatric medical institutions that studies new treatment options. An important aspect of COG’s research is to track the health of study participants over time in order to better understand the long-term effects of their treatments.