By Lenzie Davis
After being diagnosed with brain cancer, our son, Jaxon, spent his 4th birthday at the MD Anderson Proton Therapy Center.
Our world had changed just a few months earlier when Jaxon began having seizures. When doctors found a cancerous tumor, we researched treatment options and discovered proton therapy would be the best for Jaxon.
Jaxon's cancer journey
Jaxon spent his time at the Proton Therapy Center wearing a smile, riding a tricycle around the waiting room, or making wishes in the fountain. After Jaxon hit the gong to mark his last day of proton therapy treatment, we surprised him with a tricycle identical to the one he'd spent countless hours on in the waiting room.
Jaxon had always had a heart of gold, even before his brain tumor diagnosis. When he was 2 years old, he received a toy he already had. He chose to keep the old toy for himself and give the nicer, new one to another kid.
Recently in Childhood Cancer Category
By Lenzie Davis
By Bonnie Butler
Teaching in MD Anderson Children's Cancer Hospital school has helped me fall deeper in love with the art of education. I owe this to each child and family with whom I have had the pleasure of working. After all, they have truly inspired me and showed me what it means to be passionate about education, what it means to teach and to be taught.
Teaching pediatric cancer patients is my dream job
If someone had told me a year ago that I would have this job, I would have said they were lying. For me, teaching children at a hospital was always a dream, I knew that working with children facing an aggressive disease who still desired to learn new things would be especially rewarding. But I had convinced myself that it always would be.
I used to be a public school elementary educator. But after the birth of our second child in 2013, my husband and I decided that I would stay home with our children. So, with a leap of faith, I resigned from the school district that I had been so committed to for the past six years.
Not long after that -- truly out of nowhere -- I learned MD Anderson Children's Cancer Hospital was hiring a pediatric school English as a Second Language coordinator. I thought, "There's absolutely no way that I'll get this job, but I'll go ahead and apply."
In my eyes, this was a once in a lifetime opportunity, and here I am today, blessed beyond measure to work with amazing fellow educators, pediatric cancer patients and their families.
By Gaylene Meeson
We didn't hesitate to sign our daughter Hannah up for MD Anderson Children's Cancer Hospital's Camp Star Trails.
A few months later, I began packing Hannah's things for camp. That's when it dawned on me that my 6-year-old daughter, who'd been diagnosed with anaplastic medulloblastoma in 2012, would be in someone else's care for six days.
Not only that, but Hannah had become scared and no longer wanted to go to camp. She didn't remember the previous camping trip at all.
Oh no. What had I done? I hated knowing that Hannah would be away from me. What if she soils her underwear? What if she doesn't like the food? What if she doesn't make any friends? All these questions were racing through my head as I tried to pack her bag for every scenario.
Arriving at Camp Star Trails
We arrived at the campgrounds, greeted by a dining hall full of cancer kids, their siblings and volunteers. It was like a sea of faces and noise, but we found the familiar faces of our MD Anderson nurse and child life specialists. After Hannah was registered and I had turned in her medicine, she was ready to meet the other kids in cabin 9.
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 was diagnosed with a Wilm's tumor May 1, 2012. After undergoing chemotherapy, 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.
By 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.
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.
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.
A 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.
By 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.
Close 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.
When 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.
Connect on social media
- Young proton therapy warrior's legacy of giving continues
- How our Children's Cancer Hospital school helps our pediatric patients
- How a week at camp made a difference for a young medulloblastoma patient
- How Kyssi kicked cancer's butt...again
- Medulloblastoma patient: I don't see my disease as something terrible
- Pediatric cancer parent: Honor Childhood Cancer Awareness Month
- From medulloblastoma patient to triathlete: A cancer survivor's inspiring story
- MD Anderson Children's Cancer Hospital comes of age
- Cancer treatment: Radiation therapy explained
- Top spots and tips for teens and young adults at MD Anderson
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