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Results tagged “Childhood Cancer”

kyssi1.30.jpgKhyrstin Andrews, better known as Kyssi, is usually late for her doctor's appointments. The 5-year-old cancer survivor is a bit of a celebrity, and she's often stopped by other MD Anderson patients who want to meet her or pose for a picture. Her positive perspective and unique style have inspired thousands who face similar journeys.

Kyssi's Wilm's Tumor and lung cancer journey
Kyssi was diagnosed with a Wilm's tumor May 1, 2012. After undergoing chemotherapy and radiation, she rang the bell and entered remission. But not long after that, her Wilm's Tumor returned with metastasis to her lungs. Doctors said she had a 30% chance of survival.

Armed with a contagious smile and an ever-growing Hello Kitty clothing collection, Kyssi stayed strong through her lung cancer treatments: a surgery, frequent hospitalization  and after her first chemotherapy didn't shrink the cancer, another nine rounds of an intense type of chemo commonly referred to as ICE. ICE is named for the initials of the drugs used: ifosfamide, carboplatin and etoposide.

Sabrina.jpgBy Sabrina Dominguez

"What do you want to be when you grow up?" As I grazed through elementary school, the answer was never an Olympic gymnast or an astronaut. I never wanted to be the president or a princess. I wanted to save lives.

But little did I know that years later, doctors would save my life after I received a diagnosis of medulloblastoma, a common type of brain tumor in children, just a few days before my 16th birthday.

Today, four months after my medulloblastoma diagnosis, I do not see my disease as something terrible. I don't accept pity, nor do I feel sorry for myself. I see this as a learning opportunity and a story to tell to my peers when I'm allowed to go back to school.

My medulloblastoma symptoms, diagnosis and treatment

I had been having bad headaches in the back of my head. Occasionally, I would even black out and collapse. We knew something was wrong.

On Thursday, Aug. 22, 2013, I received my medulloblastoma diagnosis. I underwent surgery, but the doctors in El Paso could only remove 20 percent of the tumor. That's when my family traveled to MD Anderson.

FaithLeonard.jpgFaith Leonard wasn't sad when her son, Shane, left for college. While many of her friends in the same situation shared a tearful goodbye with their children, Faith was happy.

Just a year earlier, Shane had undergone seven weeks of proton therapy treatment for adenoid cystic carcinoma at MD Anderson. Faith and her husband Bill didn't know if Shane would live, let alone attend college.

But with his cancer in remission, Shane was ready to begin his freshman year, and his parents were grateful this day had come.

 

"We're so thankful that he's well, and that trumps everything else," Faith says. "Because we had such a big problem in front of us, now everything seems easy."

 

Adenoid cystic carcinoma treatment: caring for her son

It wasn't until she returned home that Faith realized the hole left by Shane's departure.

 

At a time when most of his peers were exploring their independence and becoming less reliant on their parents, cancer had left Shane with no choice but to become more reliant on his mom and dad. His survival had depended on it.

DeniseRager.jpg
By Denise Rager


As the mother of a seventh grade cancer survivor, I have a lot of friends who know exactly what it means to hear the words, "I am sorry, your child has cancer." And, when Childhood Cancer Awareness Month rolls around every September, I know my Facebook Newsfeed will be filled with pictures of kids who have won and lost battles against cancer. 

 

But September also reminds me that our society has not really embraced Childhood Cancer Awareness Month. The color pink is already everywhere in anticipation of Breast Cancer Awareness Month in October. We all know the struggles of women fighting breast cancer, but our kids are forgotten. Cancer moms and dads are forgotten. 

 

The only way we can change this is by telling the stories of families affected by pediatric cancer. September is our month to remind people of the battles that our kids fought and that many are still fighting. 

 

Trouble imagining the future

In 2007, my son Matthew was diagnosed with a malignant glioma brain tumor. He was just 5 years old. I remember thinking I would never see him start junior high school. In those dark times, it was sometimes hard to imagine the future. My son had brain cancer. My world was shattered.  


My faith and lots of prayer got me through those early days of despair, as did Matthew's positive progress. After a successful surgery in California, our home state, we moved our family to Houston so Matthew could get the best care possible. At MD Anderson Children's Cancer Hospital, Matthew received six weeks of proton radiation and completed 15 cycles of chemotherapy

CCH FB CW1.JPGA stay in the hospital is not on most kids' top 10 list, but it's often a necessity for young cancer patients. Now, the redesigned and expanded MD Anderson Children's Cancer Hospital will make stays easier on children.

When the idea to expand the Children's Cancer Hospital and centralize its services became a reality, pediatric caregivers on the Family Advisory Council began to work hand-in-hand with the architects and hospital staff. They considered everything from pod names to colors to furniture to floor layout.

The result: mood lighting, plasma TV screens and a basketball goal down the hall ‒ which may sound like a child's idea of a dream vacation. The good news is that the innovative treatment that is synonymous with cancer care at MD Anderson is still part of the plan.

Each patient still receives care from a multidisciplinary team of specialists who partner with families to provide the best comprehensive care for their children. Patients will be able to receive infusion therapy and inpatient services, including intermediate and intensive care, all on the same floor - a first among area children's hospitals.

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.

Young cancer patients' positive imPACT

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.

Gifts that give back Inspired by young cancer patients.JPGHolidays are the time for giving and, thanks to the Children's Art Project (CAP), giving that perfect present shouldn't be difficult this season. That's because year-round MD Anderson's pediatric cancer patients color, paint and sketch their own unique artwork, which is featured on a variety of gift items. 

The best part: sale proceeds go right back to fund important educational and recreational programs for children and their families. CAP has released its annual holiday collection, and there's no better way to show your support for kids with cancer than considering giving friends and loved ones a gift that truly makes a difference.

"This is a time of year to reflect and be thankful for all that we have," said Shannan Murray, CAP's executive director. "When I see the talents of these young patients reflected in their artwork and the wonderful opportunity we have to support them, it's reminds me of what's really important."

The latest and greatest

The "Santa Fluff" ornament, $8, is a newly released design that made its way into CAP's popular resin-based ornament collection. For years, CAP staff members have heard stories from customers about how they treasure decorating their trees with these special pieces.  They say it's a simple way of giving back and recognizing the achievements of those faced with difficult circumstances, especially around the holidays.

Moon_Shots_Program_Val_DePinho.jpgBy Val Marshall

Val Marshall's cancer journey began in May 2009, when her son Addison was diagnosed acute lymphocytic leukemia. A visit to the family doctor for what they thought was a simple high school football injury turned out to be much more.

Inspired by her son's strength and hope, Val strives to be a voice that connects other parents on this journey. Her series shares insight into her life as a mom of a typical teenager who just happens to be fighting leukemia.

Addison Marshall crush cancer


Friday, Sept. 21, was a special day, as I was invited to two very different events.

MD Anderson hosted a press conference highlighting the new Moon Shots Program, boldly defining the next frontier of cancer research. Eight diseases (lung, melanoma, breast/ovarian, prostate and several blood cancers) have been sniper-targeted for eradication in the coming decade.

True to form, MD Anderson invited family and caregivers to meet with MD Anderson President Ronald DePinho, M.D., before the press conference and be awarded assigned seats. I'm not sure if I would be impressed meeting Lady Gaga, but I was gaga over meeting Dr. D.

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.

Abigail & Rhonda.JPGRhonda Armstrong Trevino, program coordinator in the Division of Pediatrics, wears two hats. She's a mom and an MD Anderson employee on the Family Advisory Council (FAC) in the Children's Cancer Hospital at MD Anderson.

As part of the FAC, Rhonda has the opportunity to be the voice of the patient and parent, while serving as a link between the Children's Cancer Hospital and MD Anderson.  

Putting patients first is at the core of the FAC, and her role as a mother plays a big part in helping her stay focused on what matters.

How it all began

In 2005, Rhonda's daughter, Abigail, was diagnosed with osteosarcoma of the left distal femur (left thigh) at age 12. While many girls her age were excited about starting junior high school, Abigail was struggling with losing her independence.

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. 

120801Marshalls.JPGBy Val Marshall

Val Marshall's cancer journey began in May 2009, when her son Addison was diagnosed with acute lymphocytic leukemia. A visit to the family doctor for what they thought was a simple high school football injury turned out to be much more.

Inspired by her son's strength and hope, Val strives to be a voice that connects other parents on this journey. Her series shares insight into her life as a mom of a typical teenager who just happens to be fighting leukemia.

Addison Marshall crush cancer


In the many sleepless nights in the hospital, I chased sleep like a toddler denies it. I always returned to my "happy place" to visualize Addie's success in completing this 1,108-day jog that felt like a marathon without refueling breaks.

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.

By Morgan Henry, Department of Social Work

When a child is diagnosed with cancer, the whole family is affected. Understandably, parents and caregivers tend to focus on the pediatric patient while their other siblings may be unintentionally overlooked. 

Siblings and their interactions contribute to the family's overall function and it's important to consider their needs throughout the cancer experience. 

Challenges siblings face

Siblings of pediatric patients can experience a range of intense emotions including, but not limited to:

  • Feelings of burden as they assume greater responsibilities and chores at home
  • Conflict about having their own needs
  • Fear of upsetting parents with worries related to cancer
  • Feelings of isolation/exclusion
  • Loss of companionship with their sibling, the pediatric patient
These feelings can be complicated by the constant changes and disruptions families face when a child is diagnosed with cancer. Often siblings feel they receive less attention and have fewer interactions with their parents during the cancer journey. 

Stages of Griefmask1.jpgBy Janet Ruffin

Janet Hull Ruffin is an artist, arts educator and poet. She is finishing a book of poems showing what it's like to work with critically ill children in a major cancer center. She focuses on hospital culture, the therapeutic nature of art and spirituality.

She retired from MD Anderson in January 2009 after serving as the art teacher in the Children's Cancer Hospital for more than 10 years. Her position was special because the time she spent with patients and their families was not about diagnoses, examinations or treatments. They made art together. Currently, she volunteers with the Children's Art Project working with pediatric patients.


One of the most powerful forms of creative expression is achieved by combining art forms.

I practiced this concept working on a spirit guides mask project with the pediatric patients in the Children's Cancer Hospital. Spirit guide is a term used to describe an entity that remains a spirit in order to act as a guide or protector to a person.

The children and I began by reading a story about spirit guides and discussing what kind of information we would want from our guide.

Next, we brainstormed to decide what our guides would look like. Adhering plaster gauze to plastic molds of the human face made the masks. It was necessary to build out features on some of the masks, like the dragon and cobra masks. An eagle and angel mask had wings attached. There were also bear, clown and a superhero masks.  

Painting and decorating each mask took weeks because I met with each student individually at different time and in all different places.

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."

Thrown Poems 'Shock the Mind'

By Janet Ruffin

whenlifeturns.jpgJanet Hull Ruffin is an artist, arts educator and poet. She is finishing a book of poems showing what it's like to work with critically ill children in a major cancer center. She focuses on hospital culture, the therapeutic nature of art and spirituality.

I retired from MD Anderson in January 2009 after serving as the art teacher in the Children's Cancer Hospital for more than 10 years. My position was special because the time I spent with patients and their families was not about diagnoses, examinations or treatments. We made art together. Currently, I volunteer with the Children's Art Project working with pediatric patients.
 
I used to work at the Harris Country Juvenile Detention Center, so I was accustomed to making art with children in crisis and to working in intense situations. Nevertheless, I wasn't prepared for the emotional ups and downs I felt when working with children beset by serious illness. I also wasn't prepared for the grief and anxiety I felt for their parents.

Shifting emotional energy
The creative process has always been my passion, and I'm amazed at how quickly the simple process of making art can shift emotional energies.

It doesn't matter whether it's painting, drawing, writing, dancing, making music, shooting photography or cooking. Whatever creative activity takes you out of yourself for a time will work.

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.

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