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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.

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

Michael Conway

By John-Henry Perera

At 21, the last thing on Michael Conway's mind was cancer. But that changed when doctors diagnosed the healthy, athletic college student with medulloblastoma, a type of brain tumor that commonly affects children.

Twenty years later, Conway can't help but break a smile when talking about his cancer diagnosis. Now an employee at MD Anderson, where he monitors the use of donations to ensure they meet with the wishes of the donors and state policies, Conway says death didn't seem like an option at the time.

"The first thing I asked my doctor was, 'Am I going to lose my hair'?" he says. "I didn't really realize the severity of my brain tumor."

Living in the moment during cancer treatment
As it turned out, Conway's youth, energy and upbeat attitude proved to be his best coping mechanisms as he underwent seven weeks of radiation therapy. He looked upon his cancer journey as going through the motions, taking each day as it went.

Looking back, he describes the ordeal as similar to a bad breakup. "Day after day, I felt terrible, but I knew each day I got through, I was one day closer to being back to having my normal life again," Conway says. "It was rough, but eventually, one day I woke up and realized, 'Hey, it's over. I got through it.'"

His goal each day was -- and still is -- to make today the day he's going to live. "You should focus on what you need to get done today and live tomorrow when it gets here," Conway says.

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.

shah cw.JPGBy Shalin Shah, M.D.

Regardless of where radiation fits into your cancer treatment plan, you may have questions about what you'll experience during radiation therapy.

Here are a few things you should know about radiation.

How radiation works
Receiving radiation is similar to receiving a very strong x-rays.

Advances in radiation therapy allow us to pinpoint cancerous cells with amazing accuracy.

The goal of radiation is to kill the cancerous cells to both shrink a tumor and to prevent it from growing and spreading. We try to avoid normal tissue at the same time.

Common radiation myths
Patients often ask if radiation will make them glow in the dark afterwards. The answer is no.

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.

childlife and proton therapy.JPGWhen 6-year-old Allie Alvarado came to MD Anderson's Proton Therapy Center, she was nervous and didn't know what to expect. Her fear, however, didn't last long.

Allie was diagnosed with Rhabdomyosarcoma, a cancer of the soft tissue, in her ear following a month-long battery of tests. Allie's mother, Cassandre, first suspected a problem when her daughter's smile seemed lopsided. The culprit was a tumor pushing against the cranial nerve, which caused facial paralysis.

It required six weeks of proton therapy, an advanced form of radiation that precisely localizes the dosage while sparing surrounding structures. It's especially beneficial for complicated tumors and young children since excess radiation can pose problems for developing bodies.

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.

Young proton therapy patients channel their inner mad scientist.JPGFizzling beakers, gooey bars of soap and lots of smiles were just a few of the scenes at a recent celebration at MD Anderson's Proton Therapy Center.

Each week, the Proton Center hosts a patient information meeting called "Beam News" where physicians, nurses and other medical experts discuss the latest topics in proton therapy. Patients, former patients, family members and people from the community all attend. This time, however, an idea was hatched to try something new with special support from Proton Pals, an outreach group of former patients who received proton therapy at MD Anderson.

"We decided an event for our young patients would be beneficial," says Kelly Wagner, a child life specialist. "Because our staff shares a passion for science, we devised a mad scientist costume party, which would be entertaining and educational at the same time."

madsci.JPGLab transformation
For two hours, a large group of children and their families entered a makeshift laboratory filled with colorful streamers, balloons and a variety of exciting experiments. They were greeted by radiation therapists, nurses, and other staff who underwent a transformation of their own to look the part of mad scientists.

One of the experiments, called the "invisible hand," was especially a hit. A latex glove was attached to a long clear tube filled with gas. Once the gas rose to the top, the glove began inflating automatically to a wide array of smiles. The patients also created "cloud goo," a mixture of shaving cream and corn starch.

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.

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