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Patient Stories

Amazing people with inspiring stories are something we see every day at Nationwide Children’s Hospital. Meet these courageous patients and families below. 

Meet Sully

Acute Lymphoblastic Leukemia (ALL)

It was a warm May afternoon when the Brooks family was driving home from a visit to grandma’s house. Megan peered in the back seat to check on her daughter, 7 month-old Harper and son, three and half year-old Sully.  Beneath the mop of blond hair, the little boy’s face was pale, and his big blue eyes, usually snapping with mischief were dull. Sensing something was wrong, Megan and her husband Zach drove straight to the doctor’s office.

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There, the physician drew blood to confirm an initial diagnosis of mumps, and the family went home so Sully could sleep it off. The pediatrician called late that evening and said Sully had to be taken immediately to the emergency room at Nationwide Children’s Hospital – Sully’s blood tests revealed that he had leukemia. Within just 36 hours, Sully was receiving his first of what would be several rounds of chemotherapy.

“Everything really stopped on that day. I think the shocking part is when all your plans, your ‘normal’ is suddenly taken away,” recalls Zach. “It’s abrupt and you realize it’s going to change everything for years.”

Sully was diagnosed with acute lymphoblastic leukemia (ALL), one of the most common of all childhood cancers. The disease disrupts the production of normal white blood cells, and the treatment renders children susceptible to even the mildest infection. ALL can progress rapidly and is fatal without treatment. Sully’s case was particularly dire because tests revealed that the cancer had spread to his spinal fluid.  

As a national clearinghouse for storing and studying millions of childhood cancer cells, Nationwide Children’s provided Sully with a customized treatment regimen based on his cancer type.  The therapy – which will occur over three and a half years - includes a combination of oral chemotherapy, IV chemotherapy, chemotherapy shots, chemotherapy into the spinal fluid and radiation.

“Sully doesn’t even know he has cancer. That will be a part of his story someday, but right now he doesn’t understand it. He knows he’s sick. He knows the injections give his tumor ‘a drink.’  He knows he’s loved,” says Megan.

With remarkable resilience, his parents have insisted on keeping the mood positive during the treatments where Sully must stay in the hospital for days. Hospital policy dictates that visitors must know a secret password before they can call on patients. The Brooks have decided to use passwords that have the kind of gross-out funny factor that only a four year old – and a staff who is used to working with four year olds - can truly appreciate.

“Nationwide Children’s lives up to its reputation. All of the nurses are fantastic, every single one of them. They’re the most amazing team of doctors who you know will absolutely not let anything happen to Sully on their watch,” says Zach.

Sully has responded well to initial treatment, and today his leukemia is in remission. He loves to read out loud to anyone who will listen – including reciting books while going to the bathroom, and a never ending dialogue that may include tattling on himself, or his baby sister. It’s hard for Sully’s parents to believe he still has two more years of chemotherapy to endure – and that there are thousands more children just like him.

“I had no idea how many children were getting cancer – and how terribly underfunded pediatric cancer research is. I know it’s a small number of kids who get cancer compared to adults. Some of these kids getting cancer are just two. Sully hasn’t even gotten to ride a bike,” says Megan.

Inspired to help raise awareness for pediatric cancer and tell Sully’s story, Megan started a blog and active social media outreach around #teamsully, sharing her family’s experiences with Sully’s diagnosis and treatment. She and Zach are training for a half marathon to raise money for childhood cancer research – something the couple says they couldn’t have imagined either of them doing a year ago.

“When your child has cancer, it makes you able do things you would never have thought possible before,” says Zach. “These kids need attention.  They need arts, crafts, items to distract them from the medical events that they experience.  Donations for these items are valued and can be dropped off at Nationwide Children’s Hospital.  This is a heck of a place to start.”

The frustration in their voices describing the funding situation with pediatric cancers is tangible. So is the joy and optimism when they talk about how Sully, who they describe as both a sweetheart and a ‘crazy pants’  will finish chemotherapy when he is six and a half – and hopefully, never have to worry about cancer again.

But Sully, busy basking in the happiness of being home with his family, isn’t thinking about being sick.
“I am not a sweetheart,” he insists. “But, yeah. I am a crazy pants.”

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Meet Angela

Congenital Heart Disease

Claudia Irizarry was just five months pregnant when a routine ultrasound revealed that her unborn daughter, Angela, had a life-threatening heart defect that left Angela’s heart with only one functioning chamber to pump blood.  Babies born with this serious condition usually live just a short time unless their walnut-sized hearts undergo immediate reconstruction. For Angela, that meant open heart surgery to implant a synthetic blood vessel to help her heart deliver blood more efficiently to her lungs. While the surgery was successful, it wouldn’t be Angela’s last. Because her synthetic graft wouldn’t grow with her, each year, Angela would need open heart surgery to replace the graft. With the surgeries also came the risk for infection – and rejection, a problem that could occur if Angela’s body reacted to the plastic in the synthetic graft.
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Claudia says that while it was difficult knowing that her daughter would need so many risky procedures, as Angela grew into an active toddler who loved to run and play, it was obvious that her life depended on them.
 
“She would get tired easily. If she was crying or being active, her lips would turn purple or blue from not having enough oxygen,” recalls Claudia. 
 
“So it would be another year, another surgery.”
 
 At age three, when Angela was getting ready to have her third graft surgery, clinician-researchers Christopher Breuer, MD and Toshiharu Shinoka, MD offered the Irizarrys another option – an experimental procedure to use a bioengineered blood vessel, made from Angela’s own cells, instead of the plastic graft.
 
“We went online and read about the research they had been doing, and saw that this could help Angela avoid future surgeries and potentially reduce her risk for infection,” said Claudia. “This looked like her best chance.”
 
At age three and a half, Angela became the first person in the United States to receive a tissue-engineered blood vessel, marking a historic moment for the field of regenerative medicine. The graft was created by infusing a biodegradable scaffold, shaped like a blood vessel, with Angela’s own cells. After a few weeks inside her body, the scaffold melted away, leaving behind a perfectly functioning vessel that can grow with Angela.
 
"I always told Angela that she is special because she has these problems in her heart, but now she's more special because she's helping another kid,” says Claudia. “She may not have a normal heart, but she has a big heart.
 
Angela also became the first child to enroll in a five-year study to follow her progress, opening the door for several other children with organ defects who could benefit from tissue-engineered vessels.
 
“I always told Angela that she is special because she has these problems in her heart, but now she's more special because she's helping another kid,” says Claudia. “She may not have a normal heart, but she has a big heart.”
 
Today, six-year old Angela’s ‘big heart’ is pumping strong and telling her to be a firefighter. And a doctor. When she isn’t busy pedaling around on her bike with her big brother Alexander, she’s dancing, drawing and writing. She recently took up gymnastics, and loves school. Doctors expect her – and her grafted vessel – to continue to grow and thrive.
 
Even though Angela’s family is based in Pennsylvania, they make regular check-up trips to Nationwide Children’s to see Dr. Breuer and Dr. Shinoka and their team. For the Irizarrys, the trip is a labor of love – not just for Angela – but for the physicians and researchers they feel changed their daughter’s life.
 
“We love the hospital. From the doctors, to the nurses, to the people in the cafeteria. They are angels and they are friends,” says Claudia. “They helped our child and they want to help everyone’s child – not just in Ohio, but kids all over the world. I feel so lucky to have them in our life.”
 
Led by Dr. Breuer and Dr. Shinoka, Nationwide Children’s Tissue Engineering Program, is developing some of the nation’s most innovative technologies in regenerative medicine today. The expertise that created a functioning blood vessel for Angela’s heart is bringing that same advanced knowledge to children with other organ defects that can be treated or potentially cured using tissue-engineered implants.
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Meet Autymn

Bronchopulmonary Dysplasia (BPD)

Autymn’s parents have always called her a ‘miracle baby.’ Delivered at a Kentucky hospital just a few days after Christmas, 26-week old Autymn weighed only 1.6 pounds at birth. She was immediately put on specialized equipment in the NICU to help her underdeveloped lungs breathe. For a few months, there were encouraging signs that Autymn might be able to go home on a ventilator. But these hopes quickly faded as she struggled to breathe. Doctors told the Tacketts that Autymn had bronchopulmonary dysplasia (BPD) and pulmonary hypertension, both life-threatening conditions.
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Desperate for answers, Jennifer and husband Erick learned that Autymn’s physicians had been consulting with experts at Nationwide Children’s Hospital. When their doctor told them that Nationwide Children’s had one of the few Comprehensive Treatment and Research Centers for Bronchopulmonary Dysplasia in the country, the couple knew they had to go.
 
Autymn and her mother were airlifted to Nationwide Children’s, while Erick made the six-hour trip by car.  When they landed, Jennifer says she was in awe of the bustling energy of the BPD team as they went to work stabilizing Autymn and making subtle changes to her ventilator settings.
 
At one point, Jennifer was shocked to see that her little girl wasn’t breathing. The nurse quickly calmed her, saying it was because Autymn finally wasn’t working so hard to catch her breath. Stunned, Jennifer called her husband, who was still on his way to the BPD unit. 
 
“I told him that it was a miracle. She was a different baby.  She was already improving and we hadn’t even been there for two hours.”
 
And the improvements kept coming. Doctors discovered that Autymn’s pulmonary hypertension was from her strained efforts to breathe. With her breathing stabilized, Autymn no longer needed heart medication.  With the help of speech, occupational and physical therapists, Autymn has started to reach regular developmental milestones.
 
“Before, she was working so hard to breathe, she couldn’t just be a baby and do things that babies do. The help Autymn got here has let her become a normal baby,” says Erick. 
 
With so many early setbacks, the Tacketts will only talk about going home in code; they call it “going to the zoo.” But with Autymn thriving, they feel confident that their little miracle baby will soon be right back where they want her – and just in time for her first birthday.
 
I told him that it was a miracle. She was a different baby. She was already improving and we hadn’t even been there for two hours.
 
“Every day we tell her, ‘we’ll be going to the zoo for Christmas,’” says Erick. “We’ve come so far in just a few months, I would tell parents who have a premature child to not give up hope, and to find the resources that will help their baby the most, wherever they might be.  We did, and it’s made all the difference.”
 
Even after Autymn returns home, the experts at Nationwide Children’s will continue to evaluate her progress – and learn from her experiences so that other children with BPD can get the help they need.
 
As one of the few institutions in the country that conducts pediatric translational research – the kind of research that transforms discoveries from the lab into life-saving treatments – Nationwide Children’s is able to design and deliver innovative care that ultimately helps children everywhere.
 
Researchers at Nationwide Children’s are developing ways to predict which babies are more likely to get BPD with the goal of preventing the disease and improve outcomes of premature babies like Autymn. Their groundbreaking work is also helping standardize BPD treatment protocols across the nation to help ensure that babies with BPD – no matter where they are – can receive the kind of care they need to thrive.
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Meet Ryan

Duchenne Muscular Dystrophy

Ryan Vaish’s parents say that he was always a ‘healthy child,’ and never gave his unusual running gait or small delays in motor development a second thought. That changed after a concerned physical education teacher noticed Ryan was having trouble with certain activities. Ryan’s parents took him to his pediatrician, where a blood test confirmed that Ryan had a rare genetic disease called Duchenne Muscular Dystrophy (DMD)

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“I kind of went crazy, hearing the diagnosis,” recalls Ryan’s mother, Ana. “We had never heard of Duchenne’s. When we learned about how the disease progressed, it was unimaginable that our sweet, happy-go lucky son could go through this. We were devastated.” 
 
Affecting mostly boys, the disease slowly destroys muscle fibers in every part of the body, including the heart. DMD eventually steals a child’s ability to walk, run and breathe. Twenty years ago, most children with DMD would die of heart failure in their teens or early twenties. 
 
That changed when Dr. Jerry Mendell of Nationwide Children’s Hospital working with other clinician scientists proved that steroid therapy could significantly slow the disease’s progression.  The treatment ultimately became the standard of care worldwide, extending the lives of thousands of children. It was the same protocol that Ryan started on shortly after his diagnosis. However, it wouldn’t be the last time Ryan would benefit from the advances in DMD research made at Nationwide Children’s. 
 
“As I started looking into the research that was going on, I found a clinical trial at Nationwide Children’s,” Ana says. “Even though the hospital was thousands of miles away, the researchers there were trying to delay the progression of the disease, and I wanted to give the best to Ryan.” 
 
While Dr. Mendell’s research had changed the course of DMD treatment two decades earlier, he hadn’t been idle. The genetic complexities of DMD put a cure far into the future - but Dr. Mendell knew more could be done to catch DMD earlier and slow down its terrible course. The outcome of his work resulted in multiple studies aimed at doing just that. At age nine, Ryan joined one of these trials, and began making weekly cross-country trips to receive treatment. 
 
“It takes us a whole day to get there, but when we do get there, there isn’t anything the staff wouldn’t do to help us feel better. And they are just fabulous to the boys,” says Ana, speaking fondly about the other study participants as if they were her own children. “The nurses are amazing getting IVs into the boys, making them laugh, setting up video games for them.”
 
Three years into the trial, Ryan is still walking, playing video games, horsing around with the dog and arguing with his little sister – a typical 12-year old living with a very atypical disease.
 
“His condition is stable now, but I think that Ryan probably would be completely confined to a wheelchair if we hadn’t started coming to Nationwide Children’s when we did,” says Ana. “I tell Ryan that his body may be weak, but that his brain is very strong, very sharp. He knows that he has played a part in something that will hopefully, one day, help so many other boys.”
 
Supported by a robust translational research program, Dr. Mendell and teams from Nationwide Children’s Center for Gene Therapy and Neurosciences Center work closely with other scientists at the hospital who are studying related disorders. Real-time information sharing between these teams has helped Dr. Mendell find new ways to help slow DMD’s relentless attack, including the development of experimental treatments that may be able to preserve muscle tissue. 
 
Not satisfied with just slowing the disease, Dr. Mendell has also been developing a blood test that could help identify the disease at birth. Currently, most children aren’t diagnosed until age five, giving the condition years to gain ground before steroid therapy is usually initiated. 
 
Using a system developed by Dr. Mendell’s research team, the DMD blood test could be easily integrated into the current newborn screening protocol which is used by every hospital in the nation. Positive feedback from the U.S. Department of Health and Human Services and support from national health foundations will likely help bring this innovation to millions of children worldwide within the next decade – marking another historical achievement from a team that has already improved the outcome of this disease more than once.
 
“Dr. Mendell has spent his entire career trying to find a way to change the lives of these boys. He and his team have made history over and over again. They are real-life superheroes,” says Ana. “But when Ryan comes in for treatment, they act like he’s the hero. The VIP. That makes every minute, every mile, every hardship getting here completely worth it.” 
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Meet Lauren

Acute Lymphoblastic Leukemia

At first, the clues were small that ten year-old Lauren Cunningham was battling something more than the viral sinus infection suspected by her pediatrician. Intermittent facial pain. A sluggish swing of the softball bat. Longer naps. Nausea. Then one morning, Lauren woke up with her left eye inexplicably turned inward. An MRI at the local emergency room revealed a possible tumor in her brain. But the ER doctors said that wasn’t all – Lauren also had leukemia. 

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Lauren was rushed to Nationwide Children’s Hospital by ambulance. There, physicians discovered that Lauren had so many leukemia cells in her blood that she was at risk of kidney and lung failure if she did not receive treatment quickly. In order to receive this treatment safely, she had to be put on a ventilator and placed in a medically induced coma for several days. While she was in this coma, machines removed some of the leukemia cells and kidney-harming chemicals released by the leukemia cells from her blood. Once these treatments were complete, and while still on the ventilator, chemotherapy was started. The “brain tumor” turned out to be multiple small patches of blood that had settled on her brain, causing facial symptoms that looked very similar to a stroke.

“They said ninety percent of her white blood cells were leukemia cells, that she was very sick and might not make it,” says mother Mariah. “It was such a helpless feeling, but we were immediately supported by a team of doctors, nurses, clergy, social workers, therapists – everyone was totally focused on helping Lauren and helping us. Without a doubt, the doctors at Nationwide Children’s saved Lauren’s life that day.”

Watch Lauren's home video: A look inside what's it's like to be a child fighting cancer

Lauren was ultimately diagnosed with T Cell Acute Lymphoblastic Leukemia (ALL), a rare type of leukemia with much lower survival rates compared to more commonly found types of ALL. She immediately started a grueling regimen of chemotherapy, and suffered many of the typical side effects like hair loss, fevers and constant nausea. 

Never one to shy away from a moment to talk to people, Lauren created video diaries to chronicle what it’s like to be a ten year-old with cancer. What it’s like to take multiple medications, to shave her head when there’s not enough hair left, to throw up in the car on the way to an appointment, to curl up whimpering in a soft pink blanket because she feels so sick. 
On camera, she is matter-of-fact, cheerful. She can also look straight in the lens and unabashedly say, “Donate so that kids like me can get treatment. So that kids like me don’t die.” 
 
Like many other children with leukemia, Lauren’s life was most at risk during the first few weeks of her diagnosis and treatment, but – also like many other children with leukemia – the rest of her course has not been smooth sailing. A seizure, likely from damage caused by the bleeding in her brain, required another trip to the ICU, though fortunately a brief one this time around. Lauren recovered, and pushed on, charming everyone around her every chance she got. In one instant, she can be chattering happily with the staff about doing crafts with the art therapist, getting a massage, or playing with dolls – and in the next instant, expressing a wry sense of humor and resilience more typically found in someone twice her age. 
 
“Without missing a beat, after getting sick she’ll say:  ‘Phew, that wasn't what I was expecting' or ‘Gosh, we forgot to brush my hair today’ even though she lost her long curls to chemo early on,” says Mariah. 
 
Lauren will be receiving chemotherapy for at least the next year and a half. Her leukemia cells were collected and stored as part of a large “bank” of cancer cells, which will allow doctors to better understand why normal cells become leukemia cells and study ways to better treat leukemia like Lauren’s.  
 
“She’s absolutely amazing. She’s lost all of her hair. Her face is swollen from the medications she is on. She has suffered some nerve damage from the chemotherapy and needs help walking,” says her oncologist, Dr. Susan Vear.  “But she can be in pain from her chemotherapy shots one minute and quizzing you on when she can go back to dance and softball the next.”
 
Lauren is also the face of the 2015 “Give Hope” national fundraising campaign launched by Justice clothing stores. Her picture and thousand-watt smile was featured in more than 1,000 retail store locations across the nation, encouraging people to donate money to help fund childhood cancer research. 
 
Lauren’s experience and strength have also inspired her parents, who have committed to helping other families going through a similar situation, and to finding ways to support research.
 
“Lauren and other kids with leukemia have a long battle ahead. Research is saving Lauren’s life, but more research is needed,” says John. “Our mission is to continue to provide Lauren with the best possible doctors and treatment to help her beat the leukemia while helping other families and children the way we have been helped.”
 
When asked about her dreams for the future, of all the things this little girl could wish for, Lauren says, “Raise money for Nationwide Children’s Hospital.” 
 
But she’s not waiting for the future to come. She’s already started a “Bald is Beautiful” Challenge – asking people to shave their heads or keep their hair for a donation to research. Her hometown has held several “Team Lauren” fundraisers to help her family and others facing childhood cancers. 
 
 “My advice for kids who have cancer: Bald is Beautiful. Bald. Is. Beautiful.” Lauren says, her eyes disappearing into a smile as big as her heart, her hopes, her dreams. 
 
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Meet Brayden

Rhabdomyosarcoma

Little Brayden Bueter was about to celebrate his third birthday. It should have been a time of great joy, but on that special day Brayden’s mom noticed that her little boy’s eye looked as if it was bulging out of its socket. The family doctor ran some tests but the results were inconclusive. He scheduled an MRI, but Brayden was in so much pain that his mother and father decided not to wait. They took him to Nationwide Children’s Hospital’s Emergency Department.
Brayden had a tumor which was growing in his sinus cavity. He was diagnosed with rhabdomyosarcoma, a rare childhood cancer and was admitted to the Hematology/Oncology Unit at Nationwide Children’s. Within days he underwent a seven-hour surgery. Only a portion of the fast growing tumor could be removed. The remainder of the cancer was inoperable. The battle had just begun.

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It would take 43 weeks of grueling chemotherapy and 28 sessions of radiation to finally rid Brayden of the cancer that threatened his young life.

“I can’t say enough about the expertise and kindness of the doctors and staff at Nationwide Children’s. The care and caring my son received was truly unbelievable. Everyone at the hospital treated Brayden, my other children, my husband and myself just like family. The nurses even had a birthday party for Brayden with decorations and gifts. I will never forget these wonderful, wonderful people who we had just met only days before,” says Brayden’s mother, Jennifer.

Brayden is getting long-term care now and he is doing great.  He participates in Cub Scouts and is on the Grove City YMCA swim team. He loves to play video and board games. “For a time there, I thought our lives would never be normal again. Nationwide Children’s Hospital gave us back Brayden and our wonderful normal life,” concluded Jennifer.

World-class cancer expertise. Extraordinary patient care. Our staff of physicians, surgeons, physician/clinician scientists, nurses and staff provide a comprehensive approach to treatment. We offer diagnosis, treatment, ongoing management, all while we are researching for a cure. For more information about our Hematology/Oncology/BMT services, click here.
 
Please join us as we help kids like Brayden, everywhere. To make a gift, click here.


 

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Meet Gage

Three-year-old Gage was adorable, down to every last freckle on his cute little face. He was a sweet boy who loved to play with cars and trucks; but more than anything else he liked playing with his brother Bo. Life was good. 
 
When Gage was only 3-½ years old, his mother and father noticed that he was pale and weak. They took him to his family doctor who ran some blood work. The family had no sooner returned home when they received a phone call letting them know that Gage’s hemoglobin was low and that they needed to go to the Emergency Room at Nationwide Children's Hospital immediately.  
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Gage was admitted to the hospital and the next day his family learned that he had cancer - Acute Lymphoblastic Leukemia (ALL). ALL is a disease where white blood cells, which normally help fight infection and protect the body against disease, become cancerous and multiply when they shouldn't. It is the most common type of childhood leukemia, affecting about 75% of kids with this cancer of the blood cells. Kids ages two to eight are more likely to be affected, but all age groups can develop ALL.
 
Gage underwent a bone marrow biopsy, had a Subcutaneous Infusion Port (SlP) implanted, and received his first course of chemotherapy 2 days later. As of this writing, Gage has progressed through the first half of his treatments with the finish line posted at October 31, 2016. He is responding well and in remission.  “We honestly can't begin to say what Nationwide Children's means to us. They are saving our son’s life! We will always be grateful for the wonderful, caring, patient and playful staff,” says Gage’s mother, Katie.
 
Nationwide Children's Hospital is dedicated to helping kids be kids. For Gage, being a kid at home means playing with his brother, painting, watching movies, and doing things outdoors like riding his dirt bike. And when he goes to the hospital for his treatments, the kid theme continues. According to Katie, “This hospital is no doubt a children's hospital. There are beautiful bright colors, wagons, toys, games and always a cartoon on. We couldn't imagine doing Gage's treatment at a different hospital that didn't look and feel like a place for a child.”
 
Nationwide Children’s is also committed to ensuring all kids reach their fullest potential.  Not only does Katie believe Gage will reach his fullest potential, she wants to help make sure other kids do too. “Every time we pull up to the hospital I look at it and smile because I know Gage is getting the absolute best care he can. My dream is to go back to nursing school and work for Nationwide Children's one day. It would be an honor.”  
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Meet Allie

Acute Lymphoblastic Leukemia

“Leukemia.” That’s the word no parent should ever have to hear. You can imagine how heartbroken Allie’s parents were when she was diagnosed with Acute Lymphoblastic Leukemia. She was only 9 years old. While the news was devastating to her family, Allie never let it get the best of her. Her mother tells us, “She has pushed through her treatment without ever complaining once. She has been so isolated this past year having to give up everything a young child should never have to and again, not once has she ever complained or asked ‘why me.’”

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Allie’s inspirational attitude is unstoppable. When she had to make many trips to Nationwide Children's Hospital, she made the best of it - playing games with staff, volunteers, family and friends. She did crafts and enjoyed the seasons of the “Brady Bunch,” which she brought with her every time she had to stay in the hospital. Allie, famous for her love of monkeys, also taught everyone everything she knows about them.

Missing 4th grade because of her illness meant Allie needed to be home schooled so she could keep up. She was only able to go part-time when she started back to school. But with true Allie-style positive determination, she worked her way back up to full-time and even made the cheerleading squad.

Allie is a Champion for Nationwide Children's Hospital and all kids everywhere.  She participated in the NASCAR Nationwide Children's 200, the Columbus Blue Jackets Fight Cancer Night and continues to share her story to give hope and inspire others until one day “leukemia” will be a word from the past.

World-class cancer expertise. Extraordinary patient care. Our staff of physicians, surgeons, physician/clinician scientists, nurses and staff provide a comprehensive approach to treatment. We offer diagnosis, treatment, ongoing management, all while we are researching for a cure. For more information about our Hematology/Oncology/BMT services, click here.
 
Please join us as we help kids like Allie, everywhere. To make a gift, click here.

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Meet Kaylee and Tess

Life-changing reconstructive surgery

Kaylee and Tess both love the color purple and chocolate cupcakes. Right now, they are both recovering from life-changing reconstructive surgery at Nationwide Children's. But there is one major difference between them. Kaylee traveled 2,300 miles to get to Nationwide Children's from her home in Nevada while Tess traveled 11 miles from her home in Gahanna. But both their families turned here for hope and the specialized treatments the girls need now and in the years ahead.  

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Six-year-old Tess was born with a rare abdominal condition called cloacal exstrophy that affected the development of her urinary, genital and digestive systems. In this condition, these three systems are fused together, and are also exposed to the outside of the body because the lower abdominal wall does not develop properly. Tess was born at a hospital in Columbus, OH and taken directly to Nationwide Children's, where she stayed for the first five weeks of her life. During that time she had her first major surgery, to partially close her abdomen and return her organs to the inside. Ten months later, Tess had major surgery again, this time to close her abdomen and reconstruct her bladder.  A final major surgery successfully completed her bladder reconstruction.  All of these complex reconstructions required the expertise and collaboration of several surgical specialties, including urologypediatric surgeryplastic surgery and orthopedic surgery.
 
Through it all, Tess says she loves staying at Nationwide Children's because she gets to watch a lot more TV than she does at home, and there's so many options!
 
Four-year-old Kaylee, traveled to Nationwide Children’s from her home in Nevada for similar reasons.  She was also born with a very complex condition called cloaca and has had six surgeries during her short lifetime. A cloaca is a malformation in females where the gastrointestinaI, reproductive and urinary track exits are all  fused together, creating a single common channel. In normal anatomy, these openings are separate.
 
Kaylee's original surgeries to separate these tracks were not successful so Kaylee’s mom began looking for an expert second opinion, which led her to Marc A. Levitt, MD, surgical director for the Center for Colorectal and Pelvic Reconstruction at Nationwide Children's. Dr. Levitt consulted with V. Rama Jayanthi, MD, chief of urology at Nationwide Children's and together they repeated Kaylee's surgery, this time with excellent results. She can now do all the things typical four-year-olds do and there are no plans for additional surgery in the future.
 
Kristie Cassel Thompson, Kaylee's mom, wants to bring attention to her condition and assist other families seeking help. "We're all bound by the limited treatment options that are available and incredibly grateful for the help of Nationwide Children's."
 
Kaylee will need lifelong urological, gynecological and colorectal care. And because the Center for Colorectal and Pelvic Reconstruction is the first center in the world that formally integrates all these specialties, Kaylee will continue to have the expert care she needs.
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Meet Blake

Cancer –  Neuroblastoma

The most horrible words Jen and Eric ever heard were, “I’m sorry, your son has cancer,” and the most beautiful sound they ever heard was the ringing of the “Victory Bell.” The time between the two was a one-year journey filled with challenges and hope. 

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Blake was 10 months old when he was diagnosed with neuroblastoma. Because his cancer had spread throughout his body, it was initially unsafe for him to have surgery to remove the tumor. Yet, if the tumor was not removed, Blake’s airway could stop functioning. In fact, it was something of a miracle that he was able to breathe given the fact that the tumor had pushed his airway out of place. 
 
The challenges Blake faced when he was diagnosed with cancer could have seemed insurmountable, but Blake, his family, and his team of doctors and nurses at Nationwide Children's Hospital were up for the fight. Blake’s chemotherapy treatments began immediately.
 
And then a new challenge arose for Blake’s little lungs. He developed pneumonia and needed specialized treatment. Because protocol required a six-week delay for his tumor removal, a decision was made to use the time to give Blake another round of chemotherapy in an effort to shrink the tumor. 
 
Once again, hope would emerge during the hardest of times. The last round of chemotherapy shrunk the tumor to half of its original size. At last, the long awaited day arrived when Blake was cleared for surgery. 
 
While the months leading up to Blake’s surgery were long and arduous, the 9-hour procedure to remove most of his tumor must have seemed just as long to Blake’s family. The surgery was complicated, but doctors Denis R. King and Charles A. Elmaraghy teamed up to ensure its success.

After the surgery, Blake’s family was relieved to have that big day behind them; but Blake still had another big challenge to face. Because his vocal cord was paralyzed, there was only a 5% chance he would be able to eat, breath and talk normally. Once again, hope would prevail and Blake has not had difficulty with any of these things. 
 
Today, when you see the beautiful smile on 6-year-old Blake’s face, it is hard to imagine the journey he has been on. He was only a baby when he was diagnosed with a complicated, life-limiting cancer. At the age of two, after months of treatment, surgery and recovery, Blake participated in a very important tradition at Nationwide Children's Hospital. He rang the “Victory Bell” to commemorate his triumph over cancer.  
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Nationwide Children's Hospital
700 Children's Drive Columbus, Ohio 43205 614.722.2000