At diagnosis, most parents don’t know how to find the best doctors and treatments for their child. Guidelines from the American Academy of Pediatrics (AAP) describe essential services needed to treat children with cancer. The AAP says that children and teens with cancer should be treated at major children’s hospitals that can deliver an accurate diagnosis and prognosis, as well as intensive medical and psychological supportive care. This includes top-notch emergency departments, pediatric intensive care units, and surgical facilities. These services are provided by multidisciplinary, family-centered teams that include:

• Pediatric oncologists
• Pediatric nurse practitioners and physician assistants
• Pediatric nurses
• Pediatric radiation oncologists
• Pediatric surgeons
• Pediatric pharmacists
• Pediatric psychologists
• Social workers
• Child life specialists
• Rehabilitation specialists
• School specialists

This type of care is available at large regional children’s hospitals and from children’s hospitals that are members of the Children’s Oncology Group (COG). This group is made up of experts from approximately 230 hospitals that treat children with cancer. COG-affiliated children’s hospitals provide state-of-the-art treatments for childhood leukemia and conduct studies to discover better therapies and supportive care for children with all types of cancer. Through this cooperative group network sponsored by the National Cancer Institute, outcomes have improved tremendously. In addition, several individual centers sometimes design their own clinical trials.

Research has shown that teenagers and young adults have better outcomes when treated on pediatric protocols at children’s hospitals, rather than on adult protocols. Many children’s hospitals have developed programs specifically designed to meet the medical and psychological needs of teens.

The next four chapters describe the current treatments for each type of childhood leukemia, and Chapter 8, Choosing a Treatment, discusses how parents make choices if more than one treatment option is available for their child.

I am at work, an ordinary day. The phone rings, “Hello?” “Can I speak to Patty?” “Speaking.” “This is Anne at the University Medical Group Practice. I hate to tell you over the phone, but we think your son has leukemia.”

I need to back up just a bit, to the day before. I had taken my 17-year-old son, James, to a nurse practitioner, Anne. James had been a little tired for several weeks, and he also spoke of muscle pains in varying places, such as his shoulders, back, and legs. This in itself was not unusual for him because he was in weight training. But he just didn’t have his usual energy: he could not do a 25-mile bike ride anymore without getting tired. It bothered us; he was kind of acting like an old man, too tired to run up the stairs two at a time.

Anne checked him and said he looked just fine; his oxygen levels were great and his lung capacity was great. But she drew some blood for analysis—just in case—thinking mono. Thank you, Anne!

James was a junior in high school and we were turning our thoughts to colleges and dealing with him leaving home to go to college. I only took him to see Anne to set my mind at ease. After we left, I completely forgot about the visit.

The blood samples were sent off to the University Health Sciences Center and the diagnosis came back: leukemia. As Anne told me over the phone, she was in tears herself, apologizing for not telling me in person. She wanted James at the hospital ASAP. She had already booked a room for him.

Shock set in and survival instincts took over. I knew I couldn’t drive safely, so a wonderful friend at work drove me the 23 miles home. There, luckily, were my son and husband, by chance home from school and work early. Back into the car for the 55-mile drive to Children’s Hospital, not knowing even exactly where it was.

We were checked into Children’s Hospital in Denver within 27 hours of visiting the nurse practitioner. I had an awful time opening the door that said “Oncology” and escorting my son through it. The oncology docs re-ran the tests, and two hours later, we know, yes, it is leukemia. Shock. What can you do? You deal with it, somehow. You grieve. You find out what you have to know and have to do to help him. Your life stops and starts again.