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.
Results tagged “Childhood Cancer”
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.
By Sabrina Renee Dominguez
*Warning: Spoilers ahead*
"The Fault in Our Stars" has been my favorite book since Christmas of my freshman year of high school -- well before my medulloblastoma diagnosis. I've read it at least eight times. I've made connections that are probably just coincidences, and I've made everyone that I love read it.
"The Fault in Our Stars" is the story of smart and surly Hazel Grace Lancaster, a 16-year-old cancer patient who falls in love with Augustus Waters, an osteosarcoma survivor she meets in a support group.
Unlike my fellow fans, I'm confident in saying that I relate to Hazel a little more than my Augustus Waters-loving classmates.
How "The Fault in Our Stars" helped during medulloblastoma treatment
My perspective on"'The Fault in Our Stars" changed after I my medulloblastoma diagnosis. At first, I thought Hazel was rude and hostile, but after I started medulloblastoma treatment, I understood her point of view. She really and truly wasn't being rude or hostile. She was being cautious. She thought if she got close to anyone, she would eventually let them down or hurt them. Like Hazel, I know what it means to be a grenade.
Anthony Quinn hardly remembers his osteosarcoma treatment, but he sees a reminder of his journey each day. At just 4 years old, Anthony lost his leg shortly after his osteosarcoma diagnosis. But Anthony has never let that hold him back. Today, the 27-year-old is training with big dreams: to one day make it to the Paralympics.
"I've always been competitive and loved sports," Anthony says. "I've always felt that if I was given the opportunity to compete athletically in adaptive sports, I would excel."
Remembering pediatric osteosarcoma treatment
Anthony remembers going to the doctor after hitting his ankle on the coffee table -- an accident that occurred while running around with his older brother and eventually led to his osteosarcoma diagnosis. He remembers how nice the nurses were. He remembers his IV -- which he called "Robot Charlie" -- and the smells of the drugs used to save his life.
And he remembers picking out the color of the cast he would wear after the amputation. After undergoing several rounds of chemotherapy, it was clear the cancer wasn't going away. The doctors needed to amputate Anthony's leg to save his life.
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.
Faith 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. 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.
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.
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.
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.
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.
Holidays 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.
By 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.
More 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.
Rhonda 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.
Horses, 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.
By 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.
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
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