For many years, teens diagnosed with cancer were either treated like children or like older adults. But they are neither. They have very unique needs and the Adolescent and Young Adult (AYA) at Cook Children's ensures that we are meeting the unique needs of AYAs.
Navigating the teen and early adult years and finding the place where you fit in can be pretty challenging. Add cancer to the mix and suddenly the road feels lonely and long. Our AYA patients face these obstacles every day, and we are constantly in awe of the amazing dignity, grace and humor they bring to their journey – much of which is spent right here at Cook Children's Medical Center.
How this parent became a pediatric patient
When most people hear the name Cook Children's, they think of little kids. But many of our patients are teens and young adults whose conditions often respond better to pediatric treatment. So when she was diagnosed with Ewing's sarcoma, a rare cancer that typically occurs in teens, one young mom chose Cook Children's to treat her cancer. Read more about Joshlynn Wilson's journey here.
RESEARCH STUDY: Health Behaviors Survey for Survivors
The goal of this research study is to learn more about the health behaviors in childhood and adolescent cancer survivors. Researchers want to learn more about the reasons why some people exercise regularly, and eat healthy. Reasons why some people do not exercise or eat healthy are due to many things and researchers want to learn more about the reasons and help you live a healthier life.
If you were diagnosed before age 18 years, and are now a survivor, please complete this survey. Read each question and answer them honestly. This is an anonymous survey and no one but you will know you answered the way you did. It should take about 30 minutes to complete this survey. However, researchers would like to be able to contact you in the future if you choose to give researchers your contact information. We will use this information to ask if you may be interested in participating in other studies to help you improve your health.
Click here to take our online survey.
Thanks for your time in completing this survey. If you have any questions or concerns about this survey, or find that any of the questions are upsetting to you, and you would like to talk to someone, please contact the principal investigator (researcher), Lisa Bashore at 817-257-4248. If you have any concerns about your rights in this survey study, please contact the Cook Children's Institutional Review Board at 682 885-1764.
A place of their own
To meet their unique medical needs, and help ease some of the rough spots in their road to health, we have dedicated an entire area in our Cancer Center where they fit in, with care, treatment, research, and most importantly, support from peers and staff devoted to their well-being. Studies show that AYAs treated in pediatric hospitals have better results than those with the same treatment in adult hospitals. And the proof is in the numbers. Here at Cook Children's, OUR OUTCOMES ARE WELL AHEAD OF THE NATIONAL AVERAGE.
A big part of our success is due to the fact that we treat the whole person, not just the disease. So in addition to private inpatient rooms, AYAs at Cook Children's have their own common areas with rooms for fun and relaxation as well as support activities and places to just hang out and be themselves. There are also resource rooms with access to libraries and computers where AYAs can learn more about their illness and treatments. This enables them to more actively participate in their care and helps them to make informed decisions about their treatment and their survivorship.
Meet your team
All of our AYAs receive access to a team of specialists who understand the challenges of AYA cancer and are dedicated to providing holistic care.
- AYA Program coordinator/navigator – We realize that navigating your cancer treatment can be challenging, especially when you're trying to balance school or work at the same time. Our AYA navigator helps patients stay on track with their treatments, as well as with normal "life” activities as well. Our navigator connects patients with needed community resources and also coordinates our fertility preservation program.
- AYA Program Psychologist – It's common for AYAs to experience times when it's difficult to cope with cancer and the way it impacts your life. Our psychologist's job is to support your emotional well-being from diagnosis to survivorship and to help you stay on track with your treatment.
- Child Life – Yes, we get that you're not a kid, but you still need Child Life! Our Child Life Specialist provides developmentally appropriate education about your diagnosis and treatments to you and other children in your life. They also help AYAs by providing access to recreational activities and programs in the hospital.
- You will also have access to other providers, including Physical & Occupational therapy, Nutrition, and Social Work, who understand the challenges of AYA cancer and will help you meet your goals throughout treatment.
Support activities and resources
Cancer can take away a lot of the control a teen has over their own life, literally. That's why we offer the kinds of activities and resources that empower our AYAs.
We organize weekly events for AYAs who are in the hospital. These events are a time to get out of your room and meet other teens on our unit while enjoying dinner or competing in an air hockey tournament. While the point of these events is to have fun, many patients report the emotional support they receive from their peers is equally important.
Monthly teen outings
While we do have plenty of ways for teens to have fun here at the medical center, sometimes you just need to get away. Our Child Life specialists, together with our AYAs, plan outings for eating out, going to the movies, visiting a theme park, attending sporting events, and a wide variety of other fun things to do together.
Having cancer can put a strain on the college funds for many families. For that reason, we help our AYAs access scholarships so that life after cancer includes a future in the career of their choice. Explore available scholarships.
Summer camp is a big part of growing up, filled with tons of unforgettable memories – and friendships that last a lifetime. There's no reason that should end just because a teen has cancer. We have summer camps for our AYAs as well as family camps. All of our camps are staffed by a highly trained medical team to ensure that every patient who is capable has the opportunity to enjoy boating, swimming, horseback riding, and more. Learn more about the amazing camps available to our AYAs.
Most people don't think about the affect cancer treatments can have on the future, until there's a marriage and a desire to have kids of their own. Fortunately, it's not a story that's new to us. For patients twelve and up, we talk to parents and the AYAs about any risks to future fertility that might be involved with their course of treatment, such as radiation. Then we talk about the different options and resources available to preserve fertility and the hope of creating a new life in the future.
Parents, family, friends and the medical team are a very important support group for AYAs. But the one thing the group can't do is stand in the patient's shoes. Studies show that having a mentor who is around your age and has already walked the path that lay ahead makes following the treatment plan and the recovery plan much easier. It's not always easy to share your pain and fears with your mom or dad, or to complain to your doctor how tired you are of treatment. Having someone who can share their experience offers hope and strengthens the patient's ability to get through some very challenging time. It also creates a friend for life.
Maintaining balance and a new "normal"
While a bald head at our Cancer Center is in style, when kids return to school they are bound to turn a few heads. Gaining skills to cope with the questions and curiosity of friends and peers is very important to our kids as they try to gain and maintain some sense of life as a "normal" teen. That's why we provide the social structure they need.
Poo on Cancer – The Poo on Cancer event was for girls over 18 years who have experienced cancer personally. Adolescents & Young Adults (AYAs) who are diagnosed with cancer greatly outnumber children with cancer every year. This was a great event to help others meet someone like themselves!
Yes, even in the hospital, school is in. The truth is, school is a big part of any kids' life. Fortunately, no one has to miss out on schoolwork or the fun part of being in class – like friends. The awesome teachers here at the medical center are certified teachers with the Fort Worth Independent School District, so teens can keep their classes on track. Classes are small so the attention our students get is exemplary. And just like in school, there are friends, field trips, and even proms.
More than a phone connection, Skype not only lets our patients stay in touch with friends and family, it lets them see each other and creates the feeling of hanging out with them. It's kind of teleporting, without actually going anywhere.
Many of our teens are in college or taking advanced college courses in high school. That doesn't have to stop. Our resource centers and educational support help them keep up with their studies. And learning helps to keep the focus on the future.
The outside world
Having cancer can make you feel a little different from the rest of your friends. Even when they mean well, they don't always understand what you're going through. Sometimes they're afraid of saying the wrong thing or asking the wrong questions. Our Child Life team works with our AYAs on how to talk to friends, teachers, parents and family members about their cancer and treatment. It's amazing how much more normal life is if everything is out in the open in an honest and a caring way.
Gone are the days when being ill meant being a shut-in. There's lots to do here at Cook Children's that isn't medical but is good medicine ... like movie night, music, art and dances. In the Child Life Zone (CLZ) there's an area designed by our teens for our teens that includes a gameroom, a video room, and a place to just hang out. The CLZ also features a TV, music and recording studio where kids can produce videos, write lyrics, and record their own music. The CLZ makes all of this possible and more—all in a medical-free zone for Cook Children's patients. In fact, the only thing that happens here is fun, expression, creativity and belonging. It's a place where a little bit of normalcy takes hold, and hopes and dreams unfold.
We are here to help.
If your child has been diagnosed, you probably have lots of questions. We can help. For information on support, research clinical trials, and resources, click here. If you would like to schedule an appointment, refer a patient or speak to our staff, please call our offices at 682-885-4007.