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Recently by Sara Farris

kims place-CW.JPGClose to 72,000 teens and young adults are diagnosed with cancer each year in the United States, according to the National Cancer Institute. Yet, if you look around MD Anderson or any other cancer center, you might wonder where all these young patients are.

When we asked young adult survivors what would've made their experience better, they overwhelmingly said they would've liked to have met someone like themselves. 

Here are a few places young patients can go and tips you can use to find other adolescents and young adults (AYA) at MD Anderson.

Top 4 hangouts:
1. Kim's Place (Floor 2, near The Park) - Pass the time between appointments in this space just for patients, family members and friends ages 15 to 30.

Kim's Place offers free arcade games, a pool table, jukebox, basketball hoops game, comfortable couches, microwaves and a coffee machine. Across from Kim's Place is a theater room with a large screen TV, comfortable seating and computer.

Listen to a group of teenagers talk and their conversation could cover a gamut of topics from video games and movies to relationships and school. However, at MD Anderson  Children's Cancer Hospital, a group of teenagers talk with one goal in mind - to improve the experience for other young patients facing childhood cancer.

This past fall, 18 cancer patients and survivors formed imPACT (Patient Advisory Council for Teens), partnering with hospital staff in the decision-making process and working together on patient care projects.

"Teens want to leave their mark in this world. They want to give back, to help others who come to the Children's Cancer Hospital. Their involvement in this council will allow them to do that," says Lauren Shinn, a child life specialist and imPACT co-facilitator with art teacher Mindy LeBoeuf.

No more oversized hospital gowns

In their first meeting, council members brainstormed a list of things that could help patients cope with their hospital stay.

Childhoodcancer_DD.JPGBy Sara Farris

When Devon Davis was diagnosed with leukemia in February 2011, his focus was to beat his cancer. What the 13-year-old didn't expect were the side effects he would experience as a result of treatment, including weight gain.

Davis is among many young cancer patients and survivors who experience changes in appetite and eating habits as a result of therapies they receive. Studies have shown that more than one-third of childhood cancer survivors are overweight or obese.

"When we recognized this trend in our survivors, we realized we had to do something to intervene while they were still active patients," says Joya Chandra, Ph.D., associate professor at MD Anderson Children's Cancer Hospital and director of its ON (Optimizing Nutrition) to Life Program. "Now we are studying a variety of interventions, from nutritional counseling to educational video games, to see what methods will help our patients best."

More than 300 healthy recipes

One idea that came out of the ON to Life Program was the need for a cookbook of healthy recipes that families could easily make. Last week, the @TheTable Cookbook was launched with more than 300 nutritious recipes for cancer patients and healthy families.

stevenduringtransplant.JPGMore than 4 million babies are born each year in the United States according to the U.S. Department of Health and Human Services. Unbeknownst to many of those mothers, as they give life to their newborn baby, they have a chance to give life to another child who they don't even know.

When babies are born, their umbilical cords are cut and the remaining cord is thrown away. That's the standard routine. However, within those discarded cords lie young stem cells that could potentially save the life of a cancer patient or those facing other health conditions -- lives like Steven Gonzalez Jr.

Gonzalez was on a Boy Scout camping trip in 2006 when he woke up sick with a swollen face. After a trip to the hospital, Gonzalez was soon diagnosed with an aggressive form of acute myeloid leukemia (AML). The 12-year-old was given a 2% chance of survival.

Pediatric oncologists at MD Anderson Children's Cancer Hospital knew that standard chemotherapy would unlikely be enough to cure Gonzalez from his leukemia, and a bone marrow transplant would be necessary. When a search of the Be the Match registry failed to find Gonzalez a bone marrow donor, he was left with one option -- an umbilical cord blood stem cell transplant.

Now, more than five years since his transplant, Gonzalez is cancer free and devoting his time to building his foundation, Survivor Games, to support and connect pediatric cancer patients through playing video games.

mural.JPGHorses, circus performers, musicians and a crowd of pediatric patients and their families -- it was a grand way to unveil a larger-than-life mural adorning the outside wall of MD Anderson Cancer Center.

Spanning 100 feet wide and 8 feet tall, the canvas of 25 galloping horses stands as a sign of hope created from the hands of more than 75 pediatric patients and their families at MD Anderson Children's Cancer Hospital.

Performers with Ringling Bros. and Barnum & Bailey Circus® kicked off the event with a special show for patients in Clark Clinic lobby, while Beads of Courage® staff members passed out beads to celebrate the patients' strength through cancer. When it was time to unveil the masterpiece, MD Anderson volunteer Mark Scheinbaum played his accordion as the clowns paraded the crowd out to see the mural.

A ribbon-cutting ceremony followed, recognizing the artists who worked on the mural. Bone cancer patient Julia Cobb and her siblings, Jenna and Jonathan, were selected and honored as winners of the mural naming contest with their submission of Light, Hope, Wonder. 

When kids go off to camp, some things are certain -- they'll come back with new friends, lasting memories, perhaps some dirty laundry and a bug bite or two.

The same rings true for patients and siblings at MD Anderson Children's Cancer Hospital who attend one of the hospital's summer camps.

In June, more than 150 patients and siblings, ages 5 to 12, packed their bags and headed to Camp Star Trails for a week of fun. The special camp is hosted each year at Camp For All's facility in Burton, Texas, which is completely handicap-accessible.

Just like at any camp, patients and siblings have the opportunity to build their skills in archery, arts and crafts, canoeing, cooking, dance, creative arts, fishing, horseback riding, mountain biking, team sports and swimming. They also visit a small animal farm, a nature center and tackle the ropes challenge course.

Safe retreat
Children's Cancer Hospital's program manager Linda Blankenship makes sure that regardless of the campers' physical capabilities, there are activities that everyone can participate in.

jasoncoxar6.jpgThe mirror is not always a glowing reflection of one's self. For Jason Cox, there was a point when he didn't even recognize himself.

Today, though, his reflection shows a successful attorney, a community volunteer and, most important, a survivor.

Like many childhood cancer survivors, Cox overcame his cancer, but not without some challenges and side effects along the way.

In 1985, at 14, he was diagnosed with rhabdomyosarcoma in his right cheek, a tumor affecting muscles that attach to the bone. After a year of chemotherapy at 
MD Anderson Children's Cancer Hospital, he was declared cancer-free.

But six years later, while attending Texas A&M University, Cox was dealt another blow. His cancer had returned. He endured more chemotherapy and radiation, but his cancer kept coming back.

"I weighed the options of having more recurrences or undergoing a major surgery that would cause some disfiguration to my face," Cox recalls. "The decision made itself."

pedidrs.jpgTell children something and they might understand. Show them something and they'll remember it.

In March, MD Anderson Children's Cancer Hospital did just that. Through two educational events, pediatric patients and their siblings engaged in fun, interactive activities that brought learning to life.

One fish, two fish
"Red fish, blue fish," read one 6-year-old patient. She was among many participating in Read Across America Day hosted by the Pediatric Education and Creative Arts Program at MD Anderson. The annual literacy day celebrates the birthday of Dr. Seuss, inspiring more than 45 million young readers across the nation to pick up a book and read.

At the Children's Cancer Hospital, patients spent the day reading Dr. Seuss books with hospital staff, making Seuss-inspired art projects, performing a "Seussical" play with Theatre Under the Stars,and finishing the day with a Dr. Seuss movie.

Throughout the year, patients have the opportunity to participate in various interactive learning experiences through the hospital's privately accredited school. This spring, students will become young entrepreneurs in the lemonade business, will take a special tour of the Downtown Aquarium as part of their distance learning curriculum and also will engage in their annual "field day."

AR Graphic 4.jpgIf you had to design a space that appealed to a 5-year-old as well as a 25-year-old, what would it look like?

That is exactly the question architects, patients, volunteers and parents have worked to answer for the past year about the renovation of MD Anderson Children's Cancer Hospital.

Along the way, they've learned that having access to an abundance of electrical outlets is as important as hot coffee. Primary colors aren't as kid-friendly as originally thought.

Inpatient rooms should be equipped with more storage, and sicker patients want a quiet space to wait separate from healthier patients. In addition, young adults want their own unique area to hang out with peers.

Architects partnered with parents and patients to get the new pediatric floor design right, meeting with the hospital's Adolescent and Young Adult (AYA) Advisory Council and Family Advisory Council to get feedback on plans and concepts.

A bedside perspective

Lymphoma survivor Greg Alquiza, 25, voiced his suggestions for the new pediatric inpatient floor to architects at the AYA Advisory Council meeting in June 2011.

"For me, I wanted to see more inspiring stories on the walls about survivors my age," Alquiza says. "It's also important to have creative ceiling décor in the rooms and large artistic structures around the hospital that give patients something else to think about besides their condition."

marybell.jpgWhen Mary Belle Wooddy began volunteering at MD Anderson Children's Cancer Hospital, the five-year survival rate for children with cancer was less than 60%. Wooddy, who has volunteered in the pediatric playroom for 35 years, has seen that survival rate rise to 80% along with a lot of other changes at the hospital.

Now, the 83-year-old resident of the Memorial area in Houston has hung up her blue volunteer jacket at MD Anderson. She's leaving behind hundreds of smiles she has brought to young patients' faces and is taking with her as many memories.

"I don't see myself as anybody special," Wooddy says. "I just hope I have helped the patients and parents a little along the way."

Making a difference
When Wooddy moved to Houston in the 1970s, she was looking for a way to contribute. She soon found that opportunity with her Tri Delta sorority alumni chapter, which had begun a pediatric volunteer program at the Children's Cancer Hospital.

Wooddy recalls that initially when she volunteered, the Children's Cancer Hospital didn't have a playroom designated for children.

"We would purchase toys as a sorority and play with children in the hospital stairwell, while they were waiting on doctor appointments or treatment," she says.

Since then, the importance of play has become a central focus for the children's hospital. With support from MD Anderson Children's Art Project, the Child Life Program was launched and a playroom was built in the pediatric outpatient clinic. Wooddy continued to volunteer and worked alongside child life specialists playing board games and making arts and crafts with the children.

Methotrexate.jpgA news story recently in the New York Times has unveiled a growing concern among pediatric oncologists and health care institutions at large. The injectable form of preservative free methotrexate, commonly used to treat pediatric patients with leukemia and osteosarcoma, is in short supply.

The bigger drug shortage picture
Drug shortages are an increasingly frequent and serious problem affecting health care organizations across the country. 

"A number of contributing factors are causing these shortages, such as raw material unavailability, manufacturing difficulties and regulatory issues, voluntary recalls related to manufacturing problems, changes in medication formulation, and industry consolidations and economic decisions," says Wendy Heck, Pharm.D., manager of drug information and drug use policy at MD Anderson Cancer Center.

Regardless of the cause, drug shortages create great frustration for everyone involved, including purchasing agents, pharmacists, nurses, physicians, and patients. Fortunately, not all national drug shortages will go on to affect MD Anderson. 

"We meet weekly to review current drug shortages. If a shortage does reach MD Anderson, our team works diligently to develop a management plan to minimize the impact on our patients," says Joel Lajeunesse, vice president of the Division of Pharmacy. "For now, we have sufficient supplies of methotrexate for our patients."  

pedi-education.jpgWhen families first enter the doors of MD Anderson Children's Cancer Hospital, they have one thing on their minds - eliminating their child's cancer. What they get is so much more. An entire team, comprised of not just medical experts, but specialists in education, child life and other supportive services, work to keep their child's life on track.

Alaska at arm's length

Using a Polycom video conferencing system, students at the Children's Cancer Hospital accredited school have the opportunity to interact regularly with experts from the Houston Zoo and Downtown Aquarium to the Metropolitan Museum of Art in New York.

Video conferencing allows kids to travel virtually across the country to places they wouldn't be able to visit while undergoing treatment. In one of their farthest virtual field trips, patients connected with an indigenous community from Alaska and learned about their native dances and cultures.

Homework a click away

Being able to stay connected with friends is essential for patients, especially those from out of town. For many patients, the Polycom system allows them to connect with their school back home.

For patients who aren't up for leaving their hospital room, they can view programming from the classroom or PediDome on a closed-circuit television system. This is a welcomed resource for patients isolated to their rooms due to compromised immune systems.


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