By Sabrina Dominguez
I have a problem with the saying "Love yourself." People say it as if it could cure world hunger: "I know it's hard, sweetie, but all you have to do is love yourself." What kind of advice is that?
It's as if they're saying my medulloblastoma, a type of brain tumor, is going to be magically healed through my ability to love myself. I don't think so.
But during medulloblastoma treatment, I learned something important. Loving yourself does not heal you. It does not stop your disease or make the chemo work faster.
Yet loving yourself does allow you to cherish the nurses and the techs. It allows you to appreciate your friends and family who have stuck by your side and encouraged you.
Loving yourself allows you to enjoy the rollercoaster of life you've been given.
Finding pride after my medulloblastoma diagnosis
For the first couple of months after my medulloblastoma diagnosis, I refused to listen to anybody about the necessity of loving myself. I stayed in my hospital room. I refused to leave the house. I preferred to stay within my comfort zone rather than broaden my horizons.
Then it hit me: Why does it matter what other people think of me? I am my own person. I make my decisions. I can sulk and cry about how life isn't fair, or I can be an inspiration to those who are newly diagnosed, to those who have a problem with themselves because of the image chemo so generously gives them.
Results tagged “Childhood Cancer”
By Sabrina Dominguez
In the summer of 2005, after her pediatrician noticed a lump on her neck, Krista and her parents went to see an endocrinologist near their hometown of Chicago. That's when they learned she'd need surgery to remove an egg-sized tumor in her neck.
Krista, who was just 11 years old at the time, barely understood the diagnosis. But she knew it was serious. "I went onto my dad's lap and cried because I was scared," she recalls.
A couple days after the surgery, doctors confirmed the diagnosis: follicular thyroid cancer.
Follicular thyroid cancer accounts for only about 10% of thyroid cancers, and most cases occur in adults, not children like Krista. In fact, according to Krista's doctor, Steven Waguespack, M.D., only about seven cases of follicular thyroid cancer are diagnosed in children ages 10-14 each year.
Krista wondered why this happened to her. "I felt normal and healthy," she says.
The diagnosis was a complete surprise for her parents, too. "We didn't know anything about follicular thyroid cancer when we got the phone call," says Krista's father, Jim. "I was devastated, but I could not let Krista see how scared I was."
Making the decision to come to MD Anderson
Ten days after Krista's first surgery and confirmed follicular thyroid cancer diagnosis, she had a second surgery to remove her left thyroid lobe.
Shortly afterwards, Krista's family learned that the second surgery had been an incomplete thyroidectomy and that she'd need another delicate surgery.
That's when the family started looking for hospitals with experience treating follicular thyroid cancer in children. The family researched and saw countless doctors and wrote many letters before deciding to make the 900-mile trip to MD Anderson Children's Cancer Hospital.
By Ivana L. Camarillo
I've been a fighter since I was a baby. As a childhood cancer survivor, strength runs through my blood and every cell I have.
At 9 months old, I was diagnosed with infant leukemia. At 1, I received a cord blood transplant at MD Anderson Children's Cancer Hospital. I finished all active treatments for my cancer when I was 5, and I have now been cancer-free for 10 years.
Undergoing childhood leukemia treatment
Being so small when I had to fight for my life, I have very few memories of my leukemia journey. I remember being isolated all the time, and I remember looking at my hands and seeing little pieces of my skin fall off, a cord blood transplant side effect.
I even remember starting school and realizing that everything I thought was normal was in fact not normal at all. Being bald was not normal. Having scars was not normal. Going to doctor's appointments every month was not normal.
From the gardens to the skybridge to our leading doctors and kind volunteers, there are many things that set MD Anderson apart and help our patients feel at home.
Whether it's your first appointment or you've become an old pro, you're likely to appreciate these 17 unique features.
1. Our 69 aquariums. The 66 freshwater and three saltwater live coral reef aquariums in our clinics are home to 3,000 fish -- mostly cichlids, angelfish and rainbow fish. The largest freshwater aquarium, by the Pharmacy in the Main Building, holds 850 gallons.
2. The Observation Deck. Located on the 24th Floor of the Main Building, the Observation Deck offers peace and quiet, as well as a scenic view of Houston. You're also welcome to play the piano up there.
3. Our volunteers. MD Anderson is fortunate to have more than 1,200 volunteers who contributed 193,921 hours of service last year. Stop by our Hospitality Centers for a cup of coffee and to visit with these caring individuals, many of whom are survivors or caregivers themselves.
4. Our pianos. Twenty-five of our volunteers play the piano in The Park and the Mays Clinic between 10 a.m. and 5 p.m. Mondays through Fridays. They also play at the Rotary House each day. If you're lucky, you may hear our harpist or one of our two flautists as well.
5. Room service. Inpatients -- as well as their families, caregivers and friends -- can order whatever they want from room service each day from 6:30 a.m. to 9:30 p.m. Our classically trained senior executive chef comes up with the menu of fresh, cooked-to-order meals.
By John Chattaway
When Jameisha Brown was diagnosed with Burkitt's lymphoma, a type of b-cell lymphoma, her 8-year-old mind reasoned that it couldn't be too serious. After all, B was close to A, the best grade you could get.
Today, Jameisha, who goes by Meisha, knows a bit more about cancer. Motivated by her own childhood cancer journey, she's currently working to earn a master's degree in health studies in hopes of becoming a cancer researcher.
Making time for school during Burkitt's lymphoma treatment
In June 1998, Meisha had just completed second grade and was looking forward to summer vacation when she began experiencing severe abdominal pain, nausea and fatigue. After a trip to her pediatrician and an emergency CT scan, she was diagnosed with cancer. She was immediately referred to MD Anderson Children's Cancer Hospital, where she underwent three days of tests, followed by emergency surgery to remove tumors on her small intestine, colon, ovaries and appendix.
"My initial treatment lasted just over eight months. This included multiple surgeries and rounds of chemotherapy, some that were particularly hard on me," Meisha recalls.
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.
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:
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.
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