The Adolescent and Young Adult (AYA) Oncology Program at Children’s Hospital Enjoys a Weekend Off from Cancer

By Peter Shaw, MD, clinical director of Oncology, and director, Adolescent and Young Adult (AYA) Oncology Program, Children’s Hospital of Pittsburgh of UPMC

shawWe recognized 10 years ago that oncology and bone marrow transplant patients ages 15 and older require special services that younger patients do not need. In addition to the great patient- and family-centered care they receive at Children’s Hospital Pittsburgh of UPMC, we wanted to improve the quality of life for these unique patients.

One way we have accomplished this is by creating the Adolescent and Young Adult (AYA) Oncology Program, a peer-based support system for these young adults, within the Division of Pediatric Hematology/Oncology. We learned from experience and from reviewing the literature that sit-down support groups themselves are an artificial and usually ineffective way of having these patients connect with each other. Because of this, since 2005, we have been taking up to 30 of our patients, ages 15 to 20, on free, weekend-long trips away from their families and the hospital. Since then, we have enjoyed 11 trips in 11 years, with the most recent one the weekend of Jan. 9 to Seven Springs Mountain Resort.  The young adults and chaperones enjoyed all the resort had to offer; skiing, snowboarding, snow tubing, the spa, the pool, arcade, the bowling alley, and lots of food! Some teens who had never skied or snowboarded before took lessons and were hooked on these sports.

The most amazing part of the trip, however, is the friendships that form and the old ones127 that grow stronger. As a chaperone for every trip, I have the unique privilege of spending time with these amazing young and courageous people for three days. They (and we) play games, watch movies, and just hang out away from the medical, school, and home environment.

As always, this trip was a huge hit with most attendees informing me they want to go back as soon as possible. Others who are going to be over 21 have asked to come back as “junior chaperones.” Needless to say, everyone has an amazing time and it is over way too fast.

But have no fear! The next “Weekend Off From Cancer” is less than a year away!

098In the meantime, we have other AYA get-togethers such as Pittsburgh Pirates games and painting classes. Many of our attendees can’t wait until the next event so they text, talk, and go out to dinner on their own. We feel that with so many patients doing this and wanting to come back year after year, we know that we are doing something right.

If you are interested in supporting these trips and other AYA programming, please contact Children’s Hospital of Pittsburgh Foundation at www.givetochildrens.org and direct your donation to the AYA Oncology Fund.

Here’s to a happy and healthy 2015!

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January Is National Mentoring Month

15By Julianne Hagan, RD, RN, coordinator, Children’s Hospital of Pittsburgh University Middle School Mentoring Program, Children’s Hospital of Pittsburgh of UPMC

Mentoring relationships are basic human connections that let a young person know that he or she matters. As parents, we are our children’s mentors, but other adult mentors have proven to be valuable as well.

Mentors can play a powerful role in providing young people with the tools to make responsible decisions, such as staying focused and engaged in school and reducing or avoiding risky behavior like skipping school, drug use, and other negative activities.

Mentoring Works:  Be Someone Who Matters to Someone Who Matters.

In a recent national report called The Mentoring Effect, young people who were at-risk for not completing high school but who had a mentor were 55 percent more likely to be enrolled in college than those who did not have a mentor.

They were also:

  • 52 percent less likely to skip school
  • 86 percent of children who are mentored go on to higher education
  • 58 percent of mentored students improve their grades
  • 81 percent more likely to report participating regularly in sports or extracurricular activities
  • 78 percent more likely to volunteer regularly in their communities
  • More than twice as likely to say they held a leadership position in a club or sports team

Mentoring happens everywhere — in structured programs and in everyday life. Everyday mentoring is the opportunity for adults to mentor and support youth who are already in their lives. Through this more casual interaction, adults can be more intentional about how they positively impact the youth they see every day.

Being in a mentoring relationship with a young person provides a shared opportunity for learning and growth. In fact, many mentors say they are surprised and grateful for the experience because it is more rewarding than they imagined.

There are around 27,000 kids currently being mentored by more than 140 organizationsmentoring
in southwestern Pennsylvania. That’s something to celebrate this National Mentoring Month! Children’s Hospital of Pittsburgh of UPMC has many mentoring relationships, as I learned when I interviewed prospective mentors, many of whom wanted to be a mentor because having a mentor had been so important in their personal or professional life. At Children’s Hospital, employees mentor other employees, students, residents, and fellows, as well as middle school students in a mentoring program.

Children’s Hospital sponsors a mentoring program called Children’s Hospital of Pittsburgh University (CHPU). Employees from Children’s meet with seventh- and eighth-grade students from Arsenal Middle School on Friday mornings at the hospital throughout the school year. Students travel to the hospital in vans, are met by CHPU staff, and are escorted to a classroom where they spend time in group learning activities and with their mentor. CHPU mentors spend time getting to know the students and sharing their work environments with them. Students are introduced to careers in health care, form self-affirming relationships with their mentor, and learn new skills.

During the year, CHPU students have many opportunities to learn and grow. The students go on a technology tour of the hospital, do a service project, and take health and safety classes such as:

  • Tech Smart 4 Kids Internet Safety
  • American Red Cross Babysitter’s Training
  • Health Insurance Portability and Accountability Act (HIPAA) awareness
  • The importance of hand washing
  • CPR

CHPU mentors and instructors deserve our appreciation and thanks for taking time out of their busy workdays to spend time with middle school students! Thank you to the mentors and other staff who make the mentoring program possible. A special thanks to the CHPU mentors who are listed below:

Carolyn Biglow
Lindsay Bromberg
Kelly Butler
Jessica Higgins
Alex Hill
Sara Hodges
Alanna Kanawalsky
John Krysinsky
Kathi Kulka
Elizabeth Moneck
Harun Rashid
Sheryl Rosen
Annette Seelhorst
Tonja Smith

There is still a need for mentors in our community.  A total of 815 kids are on waiting lists for a mentor in the Pittsburgh area. Now is the perfect time to volunteer with a program and help eliminate the wait for mentors.

To learn more about the many opportunities to be a mentor in Pittsburgh and the surrounding areas, please visit: The Mentoring Partnership of Southwestern Pennsylvania

For more information on Children’s Hospital of Pittsburgh University, please contact Danielle Williams at danielle.williams@chp.edu or Julianne Hagan at julianne.hagan@chp.edu.

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Some Clues for Parents: Does My Teenager Have an Eating Disorder?

By Elissa Gittes, MD, adolescent medicine specialist, Division of Adolescent and Young Adult Medicine, Children’s Hospital of Pittsburgh of UPMC

Gittes_Elissa_MD_11_2005_Adoles

Eating disorders are common and complex, and can affect a teenager’s emotional and physical health. In the United States, 20 million women and 10 million men suffer from an eating disorder at some time in their life. Below are some frequently asked questions for families to review if they think that their teenager may have an eating disorder.

If you are a parent and you think your child may have an eating disorder, what can you do to help?

The elements that often predispose an individual to an eating disorder are:

  • Body dissatisfaction
  • Low self-esteem
  • Lack of coping strategies to navigate a complicated world

The specific types of eating disorders include:

  • Anorexia nervosa
  • Bulimia nervosa
  • Binge eating disorder
  • Eating disorder not otherwise specified

In all forms, the necessity for identification and treatment is the same; parents are key players in this process.

What are some clues to an adolescent with an eating disorder?

Over-concern with body weight and shape: Teens often do not realize that normal body changes for girls in puberty include fat distribution around the breasts, thighs, and hips. In boys prior to the growth spurt, there is midline fat (“chubbiness”). Parents and health care providers can help modify this common concern through education and support of these normal changes.

Avoiding family meals, skipping meals, avoiding interactions with friends or family when food is involved, reading food labels, restricting foods based on calories/fat content, and fad dieting or cleanses: Teens live in a multimedia world with constant exposure to media messages. Most messages on dieting are aimed at adults, not at adolescents, whose bodies require adequate fuel intake for the high metabolic demands. A balanced diet for teenagers, which includes all food groups and adequate fuel intake, is a healthy one.

Change in mood, emotional liability, anxiety, depression, isolation, lack of interest in prior activities: Eating disorders in their simplest form are a coping mechanism for stress. Teenagers’ lives are full with academic, social, athletic, and career pressures. Eating disorders, to a degree, allow control over one aspect of this dynamic state. Parents can help support a teenager by simplifying and prioritizing his or her activities. Encouraging some “down time” daily for self-care and emphasizing balance — not perfection — are useful. Asking for professional help through a school counselor, private therapist, or religious mentor, may help the teen develop healthier coping strategies.

An excellent resource in Allegheny County is re:solve Crisis Network for acute intervention.

Perfectionist approach to athleticism, exercising in secret, unrealistic exercise goals: Moderate exercise and the love of a sport are to be commended. However, if a parent notices an athlete regarding the sport as a chore or a rigid task with unrealistic expectations, the parent might be more suspicious of an eating disorder. Training above and beyond what is recommended by a coach may also be a clue for parents.

Some sports that are at higher risk for participants developing an eating disorder include:

  • Distance running
  • Track
  • Gymnastics
  • Cheerleading
  • Dance
  • Figure skating
  • Wrestling

Over-exercise is a form of “purging,” or ridding the body of excess calories to attain or maintain an unhealthy weight or excessively lean physique. Activity for lifelong health is recommended by the medical community. Teen athletes should be supported and encouraged. The concept of excessive exercise can be difficult to recognize by parents and providers. Asking for input from the coach about the athlete’s intensity of training and true enjoyment of the sport can be helpful. Increasing the fuel intake to balance the energy output from sports and exercise is warranted.

As with most illnesses, early detection offers a higher recovery rate and fewer lifelong consequences. A warm, non-judgmental approach might allow the young adult to disclose his or her eating disorder. Avoid blaming; there is often shame and low self-esteem in those with eating disorder diagnoses. A parent is the youth’s best advocate.

What can a parent do to start a conversation?

Sample questions that may help include:

Can we talk about the changes in your eating habits?

“It seems like some of the foods you used to enjoy, you ‘don’t like’ anymore. Since you seem concerned about your health, let’s figure out together a ‘balanced diet.’” (Look at what energy intake needs you have for your child’s stage of development, athleticism, or weight loss desires if he or she is overweight.)

Are you feeling less confident about your body?

“Everybody’s body is different, and the media portrays an unrealistic expectation for us all. Has the media, your peers, or your coach recommended you change your body shape or weight? Perhaps we can see your doctor and if you are at a high body mass index (BMI), you can start to make some changes in a safe way.”

You do not seem as positive about yourself.

“You seem sad, more quiet than usual.  May we talk? Perhaps I can help. This is a pretty stressful time for you. Sometimes it feels good to have control of something. Do you think that dieting/excessive exercise/food binges, might be a part of being more in control?  So many people feel that way, and figuring out ways to handle or lower the stress, often helps with the food issues.  Let’s tackle this together. It’s too difficult to do alone.”

Dedication to your sport and wellness is admirable.

“However, you appear to be losing weight while training by limiting your calories. Your body may start to break down muscle mass for fuel, and your athleticism may become compromised. Excessive exercise, just like inactivity, can be harmful. May we meet with your coach/instructor/trainer so that we can plan a workout regimen that will improve and maintain your athleticism? Perhaps a sports nutritionist may be helpful.”

Where can a parent find more information about eating disorders?

Many resources exist for parents to help their child with an eating disorder. Online resources include:

National Eating Disorders – www.nationaleatingdisorders.org

The Eating Disorder Foundation – www.eatingdisorderfoundation.org

Academy of Nutrition and Dietetics – www.eatright.org

Choose My Plate – www.choosemyplate.gov

For more information about the Division of Adolescent and Young Adult Medicine, call 412-692-6677 or visit www.chp.edu/adolescent.

 

 

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Eating Happy or Eating Healthy — Do You Have to Choose?

By: Ann Condon-Meyers, RD, LDN, Children’s Hospital of Pittsburgh of UPMC It’s not unusual for parents to ask us in the Nutrition Clinic at Children’s Hospital of Pittsburgh of UPMC for help with their picky eaters. While not recognized by … Continue reading

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2014 Dignity and Respect Award

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Karyn Sulit, a nurse in the Neonatal Intensive Care Unit (NICU), won the Dignity and Respect Champion for 2014 at Children’s Hospital of Pittsburgh of UPMC. This award is given to only one person per UPMC Business Unit each year to … Continue reading

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Jackson’s Journey: Battling Biliary Atresia

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By Tamara Circle, mother of Jackson  On July 1, 2014, my husband and I welcomed into the world our second son, Jackson Fynn Circle. It was one of the happiest days of our lives. Little did we know that in … Continue reading

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Children’s Survivorship Team Wins $25,000 Award at Pitt Innovation Challenge

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By Noelle Conover, Project Coordinator, SurvivorConnect, Children’s Hospital of Pittsburgh of UPMC The Survivorship Clinic Team within the Division of Pediatric Hematology/Oncology at Children’s Hospital of Pittsburgh of UPMC recently competed in the latest Pitt Innovation Challenge (PinCh). PInCh is … Continue reading

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