By Gaylene Meeson
In July 2012, my husband and I heard the words "your daughter has a brain tumor," and our lives changed forever. You hear about adults being diagnosed all the time, but we didn't even know that children could have cancer.
At the time, Hannah was only 4 years old and getting ready to start school in the Cayman Islands, where we live. But when the doctors said she had anaplastic medulloblastoma, an aggressive type of brain tumor, we found ourselves embarking on our epic battle to help her stay alive.
Our childhood cancer journey: Starting medulloblastoma treatment
After a surgery in Miami, we moved from the Cayman Islands to Houston so that Hannah could undergo proton therapy at MD Anderson, followed by six months of chemotherapy. Our family was split up, and the treatment was brutal. Hannah was wasting away before our eyes, and we could do nothing but pump more drugs into her to try and stop the cancer.
We kept focused on the end date of May 2013, when we thought we could finally go home and life would return to normal. But in April 2013, we received further devastating news: the cancer had progressed.
Results tagged “Childhood Cancer”
By Gaylene Meeson
By Ian Cion
For the past five months, I've been working with more than 1,300 patients, family members, and staff at MD Anderson to create a monumental scale river dragon sculpture entitled Okoa the Wave Rider. The sculpture, a project made possible by the Arts in Medicine Program, was built entirely on site in the Main Building. You may have seen it on display, or maybe even contributed to it, in The Park.
The name, "Okoa," was selected through a vote by the patients and families who helped create the dragon. It's a Swahili word that means "rescue, save, redeem or deliver."
It's a fitting name, as Okoa was built to demonstrate the effectiveness of community art in bringing joy and relief into the cancer center.
The sculpture and the art table where patients, families and staff joined together to make it were actually both works of art. What make the dragon so beautiful are the sculpture and the time shared in its creation, the simple fact that these thousands of people were excited to contribute, to take time out of their day, to stop and laugh and draw or paint, to share their stories with each other around the table.
How we made the dragon
Since its inception in 2010, the Arts in Medicine Program has focused on large-scale, long-term creative collaborations with patients and families undergoing treatment at MD Anderson Children's Cancer Hospital. But this project was the first to bring together patients, families and staff from the entire hospital.
For 5-year-old Khyrstin Andrews, better known as Kyssi, and her mom, Marla, it was just as tough when Kyssi lost her hair the third time as it was the first.
In 2012, Kyssi was diagnosed with a Wilms' Tumor, a type of childhood cancer that affects the kidneys. After undergoing chemotherapy and radiation, she was declared cancer-free. But not long after that, her Wilms' Tumor returned and metastasized to her lungs. She underwent a surgery and an intense type of chemotherapy called ICE (a combination of ifosfamide, carboplatin and etoposide).
In January 2014, Kyssi was declared cancer-free once again. But at her six-month follow-up appointment, doctors found that Kyssi's cancer had returned a third time. As always, Kyssi and her family, friends and more than 160,000 Facebook page supporters and more than 9,000 Instagram followers, were ready to beat Wilms' Tumor -- and smile while doing it.
Kyssi and Marla, an inseparable pair, know it's important to look on the bright side even on the toughest days, so they decided to make shaving Kyssi's head as fun as possible.
Here are Marla's tips for those helping others cope with hair loss:
By Madylan Eskridge
At 10 years old, Kenady Strutz was diagnosed with melanoma, often thought of as a cancer that only affects adults. Kenady has turned her pediatric melanoma diagnosis into a platform for educating others about protecting their skin.
Laurie Strutz always had heard that the skin cancer melanoma took more than a decade to develop after a blistering sunburn. So she was shocked when her 10-year-old daughter was diagnosed with the disease.
"I didn't think it was possible for someone Kenady's age, especially since she'd never had a bad sunburn," Laurie says.
A surprising pediatric melanoma diagnosis
Kenady, now 14, remembers noticing a purplish spot on her knee when she was 9.
"I told my mom I didn't like it because kids at school stared at it," Kenady recalls.
At her 10-year checkup, Kenady and her mom pointed it out to a pediatrician, who referred them to a dermatologist.
But even then, her mom didn't think much of it.
After the pathology results confirmed it was melanoma, Kenady began her cancer journey at MD Anderson Children's Cancer Hospital.
When 12-year-old Caroline Richards first mentioned a pain in her right arm last December, her mother, Lauren, chalked it up to a minor injury -- probably just a muscle pulled during basketball practice. But a few weeks later, Caroline woke up in the middle of the night, saying it felt like knives were stabbing her in the bone. That's when Lauren feared that it was something far worse.
Her fear was confirmed after a whirlwind day that included appointments with their pediatrician, a pediatric orthopedic specialist, an x-ray and an MRI. The diagnosis: osteosarcoma in Caroline's humerus, near the shoulder.
A new home base for osteosarcoma treatment
While the news sent the Richards family reeling, they soon got to work finding the best place for osteosarcoma treatment. After a few phone calls, a family friend put them in touch with MD Anderson Children's Cancer Hospital.
While leaving behind family and friends was difficult, the Richards quickly found comfort and support at MD Anderson Children's Cancer Hospital.
"Along with the excellent physician care that we get, the nurturing environment of the Children's Cancer Hospital really is what keeps us at MD Anderson," Lauren says. "It really is like a little pediatric oasis. There's a lot of love there. Caroline gets disappointed if her blood counts aren't high enough to go in for chemo because she loves the nurses so much."
By Taylor Nance
By the fall of my freshman year, I was well on my way to navigating high school when something unexpected came up -- a stage 3 melanoma diagnosis.
I remember it vividly. It was November 3, 2011 -- the first Friday I'd been invited to sit with the varsity dance team at the Austin High School football game. I had made a trip to the dermatologist after a spot suddenly appeared on my ear and began growing quickly.
The next two years proved to be both challenging and inspirational for me, as I fought (and won!) my battle against skin cancer.
Undergoing melanoma treatment during high school
My melanoma treatment began right away. I was quickly scheduled for three surgeries on my ear. The first surgery removed the melanoma and the surrounding tissue along with the lymph nodes that surrounded the cancer. The second two surgeries were for the reconstruction of my ear. I also had to undergo a year of interferon, a type of immunotherapy.
For the first month, I had to leave school early so that my mom could drive me to MD Anderson to receive the interferon through my PICC line (a long, slender, flexible tube that is inserted into a peripheral vein, typically in the upper arm). Going to school with my PICC line always made me nervous. I hated walking through the crowded halls, trying to shield my arm so it wouldn't get bumped, but luckily, I was usually able to dodge the backpacks.
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.
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.
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