Pediatric patients have been a part of MD Anderson’s history since the institution was established almost 70 years ago. Though pediatric cancer is rare, MD Anderson’s Children’s Cancer Hospital has a robust program and sees more than 2,000 children from around the world each year.
The following three programs and initiatives at the children’s hospital are just part of what makes this a unique place for pediatric care and treatment.
1. Living the life in ‘cancer land’
Birthdays, choir concerts, graduations, summer camp and family vacations are special times to remember. They’re part of growing up.
Physicians like Pete Anderson, M.D., Ph.D., professor in the Division of Pediatrics, work so young patients can continue their activities and make “normal” a possibility during cancer treatment. Anderson employs numerous tools for families, including an online calendar where important dates in patients’ lives are noted along with their treatment schedule.
Patrick Zweidler-McKay, M.D., Ph.D., assistant professor in the Division of Pediatrics, agrees with this idea. “I try to get my patients involved in as many activities as possible, and then I schedule their chemotherapy and appointments around these important events in their lives,” he says.
Anderson also uses one-page summaries for each of his patients and puts their medical information, calendars, a PowerPoint of the location of the tumor, sample orders for referring physicians, articles and more on a flash drive for patients to take along to share with family, home physicians and nurses.
While processing complex medical information is a “new normal” that patients and families must adjust to, many say that having their personal medical information is motivating and helps them become experts on their own situations.
“I also try to learn all that I can from each family and referring physician, and, if other faculty members are doing things exceptionally well, I attempt to incorporate them into my practice,” Anderson says. “The dictation you do can be very positive and shows that you know them personally and really care — and you forget less than you would if you did it at the end of the day.”
He also believes that any care accomplished in an outpatient setting has a big advantage for a child’s quality of life.
At MD Anderson, additional opportunities for meaningful life experiences, such as summer camp and snow skiing, are offered to pediatric patients and their siblings. These activities help children with cancer increase their confidence and give them something to look forward to. Patients often say that it helps them “feel more normal” when they interact with others their age who are going through the same thing.
Many physicians also urge their patients to use such tools as journals and blogs to report what is happening during the cancer journey. These are helpful in letting others know about the patient’s health, provide a means of chronicling the treatment and also allow for self-discovery. In addition, online support groups are empowering. Patients and caregivers are hungry to talk to others in the same situation.
“What keeps you going is realizing that you’ve done your very best to make a difference in someone’s life. It’s not just whether they live or die — it’s also about the quality of their life,” Anderson says. “Patients have a very rich, long narrative full of detail. They come to MD Anderson to write a few more chapters, and they hope they can start a whole new book.”
2. Beam me up
When we talk proton therapy, we’re speaking of the tiny beams of radiation that can be delivered to a tumor with remarkable precision.
We’re also speaking of offering the advantage of a sophisticated technology that may reduce a young patient’s side effects during and after therapy.
In May 2006, the Proton Therapy Center at MD Anderson opened and that September treated the first pediatric patient.
Anita Mahajan, M.D., is happy for Kate McRae
as she prepares to strike the gong announcing
the end of her proton therapy.
Anita Mahajan, M.D., makes it very clear that there must be a perceived benefit for a pediatric patient to receive proton therapy treatment.
“We look for patients with a significant chance of survival who can benefit from more targeted radiation. This is not a palliative care option,” says Mahajan, associate professor, co-section chief of the Pediatric and Central Nervous System Section and director of Pediatric Radiation Oncology in MD Anderson’s Department of Radiation Oncology.
The Proton Therapy Center has treated more than 300 pediatric patients, with the vast majority young patients with brain tumors. However, patients with rhabdomyosarcoma, Ewing’s sarcoma, osteosarcoma and “really anything that requires precision radiation treatment” have been treated there, Mahajan says.
Her first response when asked about the primary difference in treating pediatric and adult patients with proton therapy is that “pediatric patients are more fun.” Then she gets serious and discusses the sedation necessary when using proton therapy with younger patients. “Our sedation is normally through an IV ,” she says, “rather than intubating young patients, which is a risk for trauma and injury.”
At MD Anderson, a multidisciplinary approach to treatment is used with pediatric proton therapy. Team members may include a pediatric anesthesiologist, a pediatric oncologist and surgical support. Although all team members may not be on site during the proton treatment, they are all nearby if needed.
“Fragmentation of care can be less than optimal,” Mahajan says, “and that’s an advantage pediatrics has in being part of a larger adult-based hospital.”
Generally, pediatric patients receive 25-30 treatments over a period of five to six weeks. Though the side effects are few, if any, Mahajan explains that any tissues or organs developing near what is being treated are at risk.
Susan Ralston, mother of 4-year-old Jacob, who was treated with proton therapy at MD Anderson at age 2, says, “Proton therapy is not only advantageous in the treatment plan, but also helps preserve the quality of life for children and reduces the risks of later secondary cancers caused from radiation exposure. We credit proton therapy for helping to save our son’s life and hope to help others.”
Overall, children will have better quality of life because their issues are minimized with proton therapy. “We cure them better,” Mahajan says.
3. Focusing on the benefits of eating healthy
Fruits and vegetables are “in,” along with the new “Optimizing Nutrition (ON ) to Life Program” led by Joya Chandra, Ph.D. This multidisciplinary program works to promote healthy eating habits in pediatric patients and survivors.
Already, more than 150 survivors and their caregivers have been surveyed, and the results show a majority of survivors recognize issues related to nutrition and obesity, and want to change their habits.
Michael Giles (right), an eight-year survivor
of brain cancer, enjoys a moment at Kim's Place,
a hang-out for adolescents and young adults at
MD Anderson. With him are Maria Chang (left)
and Joya Chandra, Ph.D., who are starting a
Fit4Life program for pediatric patients.
Based on this information, Chandra, associate professor in the Division of Pediatrics, will evaluate a program called Fit4Life. The program will use cell phone and web-based intervention tools to approach brain tumor survivors ages 12-18 and their families. It is piloted by Maria Chang, a doctoral student who is collaborating with physicians from the University of California San Diego, as well as MD Anderson’s Department of Behavioral Science.
Survivors will receive nutrition information and have access to a website to help learn about different types of foods and food values. Cell phone reminders will prompt them to implement behaviors they have learned about. As they proceed through the program, participants will log their successes onto the site.
A nutritionist has been hired to work with the Children’s Cancer Hospital’s ON to Life Program. Rhea Li, a registered dietician, plans tailored nutrition counseling, following patients through their therapy to see how they benefit from eating well.
Li will compile nutrition information for Children’s Cancer Hospital patients and also will work with the education program to distribute these materials to healthy children through the back-to-school integration program. In addition, there’s a possible “virtual” cookbook that Li will work on in collaboration with the MD Anderson Advance Team and the Board of Visitors Children’s Cancer Hospital Advisory Group/Communication and Image Subcommittee chaired by Board of Visitor member Pamela Onstead.
Video technology is part of the nutrition plan, too. A focus group of patients and survivors will pilot a video game developed by Tom Baranowski, Ph.D, professor of pediatrics at Baylor College of Medicine, in coordination with Houston design studio Archimage. “Escape from Diab” is an interactive game aimed at preventing childhood obesity and type 2 diabetes through healthy eating and exercise.
“With these and other facets of the ON to Life Program, I believe pediatric patients, survivors and their caregivers will learn and reap the benefits of healthy eating and exercise,” Chandra says. “And for kids as well as adults, these healthy lifestyle lessons can actually be a great way to prevent many types of cancer.”