No one is made for cancer, but Perry Oviedo certainly has the spunk it takes to beat it. At just 3 years old, she’s already spent nearly two years fighting a type of blood cancer called acute lymphoblastic leukemia (ALL), and she’s done it with a heaping dose of grit and grace.

“As soon as she started showing glimpses of a personality as a baby, we thought, ‘Oh, God, we need to buckle up because something is different about this kid,’” said Ashley Oviedo, Perry’s mother. “She’s always had a very large personality. We jokingly call her our feral child because she’s just wild, silly and sassy.”

Acute lymphoblastic leukemia is an aggressive cancer in which the bone marrow makes abnormal white blood cells that crowd out healthy blood cells. Red blood cells carry oxygen throughout the body. Having too few of them results in anemia, which means the body’s tissues and organs do not get the oxygen they need to thrive. Perry’s diagnosis came after about six weeks of symptoms that doctors originally thought were due to a viral infection. Some ALL symptoms, such as fever, fatigue and loss of appetite, overlap with common viral symptoms.

Slowly, Perry’s once vibrant personality faded into fatigue, Ashley says. Her cheeks turned pale, and her big brown eyes were overshadowed with dark circles underneath. Once a good sleeper, Perry began waking multiple times at night.

“At her second birthday party, we noticed that she just wanted to be held,” Ashley said. “You would think, even if she wasn't feeling great, she would still somewhat enjoy her birthday party with all of the fun and cupcakes and friends. I thought something might be wrong because she wasn’t really acting like herself.”

In the weeks that followed, Perry’s tired demeanor gave way to a persistent runny nose and stomachache. Maybe she was cutting her molars, had an ear infection, or was fighting a virus or two that came and went, thought doctors and the Oviedos. But Perry never seemed to fully recover, and Ashley kept pushing for answers. 

One finally came on a Wednesday morning in January 2024, and it changed their lives forever.

Clues Emerge

On the eve of that fateful day, Perry spent the morning with her grandmother, who noticed that Perry didn’t look or act as if she felt well—a concern she expressed to Ashley during a phone call discussing pick-up plans. Her mother’s worry confirmed what Ashley and her husband, Joseph, had witnessed for weeks. Something was wrong with their baby, and it was more than just a virus. 

“It was super validating to hear from someone else who knows her so well that they also thought something was wrong,” Ashley said. “I needed to hear that because I didn't want to be the crazy mom making another appointment and insisting that something is seriously up with her.”

Ashley made a beeline to her mother’s house to pick up Perry. 

“When I got there, my mom opened the door and Perry was standing next to her, and I'm not kidding when I say Perry was unrecognizable to me,” Ashley said. “She looked almost jaundice-like and had little bruises on her face.”

Ashley made an appointment with Perry’s pediatrician for the following morning. It was the first time since the onset of Perry’s symptoms that her long-time pediatrician examined her, having been out of the office when Ashley initially took Perry to get checked out weeks before. The doctor immediately noticed the difference between the spirited Perry she was accustomed to seeing and the Perry in her office that day.

By that afternoon, results from bloodwork performed at the pediatrician’s office were in, and revealed troubling abnormalities. Too soon to suggest a diagnosis, the pediatrician’s office called and instructed the Oviedos to take Perry to the Emergency Department at Cook Children’s Medical Center for further testing.

Taken By Surprise

Ashley and Joseph were more relieved at having a potential clue to Perry’s health issues than they were alarmed, never imagining the diagnosis that was to come. At this point, no one had mentioned cancer, or anything close to it.

“I was so naive to the fact that cancer was even a possibility,” Ashley said. “I will never forget, when we were pulling up to Cook Children's to park that day, there was a dad pushing a little boy who obviously had cancer in an umbrella stroller right through the courtyard in front of Peaks the Dragon. And I thought to myself, ‘Oh my God, can you imagine?’”

But in the ER, there seemed to be an elephant in the room. No one wanted to deliver the bad news.  

After several questions from the Oviedos, the ER doctor reluctantly shared a likely diagnosis, beginning with the best-case scenario.

“The cure rates for ALL are very high,” the doctor said.

“What is ALL?” Ashley asked.

“Leukemia,” he replied.

“Before I start overreacting, are you telling me we are here because you think my baby has cancer?” Ashley pressed. 

With a sympathetic nod of his head, the doctor confirmed the diagnosis. The news knocked the breath from Ashley’s lungs.

“In that moment, our world just completely stopped,” Ashley said. “The nurse and the doctor were standing there clearly devastated and heartbroken to be delivering the news to us, but I forced it out of them. In hindsight, they weren't planning to be the ones to tell us.”

Rapid Response

Behind the scenes, Perry’s blood was being carefully studied under a microscope, and a care team was already forming a treatment plan. Two of those team members, Holly Pacenta, M.D., Cook Children’s hematologist/oncologist, and Alan Ready, CPNP-AC, a hematology/oncology nurse practitioner, met the Oviedos in the ER to explain the diagnosis and outline the steps ahead, which included two and a half years of chemotherapy. By that evening, Perry was settling into what would become her home away from home during much of her treatment—Cook Children’s Hematology and Oncology Unit. Within 24 hours, she began her first round of chemotherapy.

“The first 48 hours were a whirlwind,” Ashley said. “I was so grateful that they were able to intervene so quickly at the time. It was unbearable to sit there and hear that your child has cancer, but the rate at which we were diagnosed and started treatment, the efficiency and urgency, it's just unmatched care. We're just so fortunate to be where we are and have the team that we do.”

Perry’s Personality Returns

The 30 days of steroids that Perry received during her initial phase of treatment proved the hardest part for the toddler. Swelling made her uncomfortable and unable to walk, and she wanted to eat constantly—both common side effects of steroids. When Perry requested mac and cheese at 3 a.m., the Oviedos obliged, knowing the small act brought a little comfort and relief to their baby.

As treatment progressed, the Oviedos began to see glimpses of their daughter’s spunky personality return. Her care team noticed, too.

“She is such a sweet little girl with a lot of spunk,” said Dr. Pacenta, Perry’s hematologist/oncologist. “Whenever she comes to clinic, she usually ends up in the workroom where the doctors and nurses sit, entertaining us or showing off her outfit. She is always happy to see us and full of joy, even when she knows she’s coming to her doctor visit to get chemo. It reminds me that she’s still just a little toddler who just wants to play and laugh.”

Now in the final stage of treatment, known as maintenance, Perry takes oral chemotherapy at home.

“She has taken ownership of her own treatment,” Ashley said. “I fill the syringes and she does her meds herself and rinses them out. I can’t believe how big of a girl she has become through all of this. It's just wild to see how she’s adapted to it all.”

In April, following her final dose of chemotherapy, Perry will do what all cancer patients and their families dream of doing. She’ll ring the bell on the Hematology/Oncology Unit to signal and celebrate her completion of cancer treatment.

“We were really fortunate that Perry responded really quickly to treatment and that she checked all the boxes to be considered the most favorable category for the lowest risk of relapse for her type of cancer, which is a miracle,” Ashley said.

Play is Medicine

Medical interventions like chemotherapy may heal the body, but the interruption of childhood can wreck the mind and spirit. Cancer treatment is traumatic, especially for very young children like Perry. They often lack the emotional skills to process and articulate their feelings. Kids battling cancer may also miss out on important developmental and social milestones like play dates with friends or attending pre-school.

That’s why healing supports like play therapy are as important as chemotherapy. Play is a language all kids understand, whether they’re speaking full sentences or have yet to form their first words. It helps them feel like a kid again while walking through a deeply serious and complicated circumstance, and provides an outlet for expressing their feelings and practicing social skills.

“Whether you’re a toddler, or an 83-year-old with profound life experience, play is universal,” said Leah Webb, LPC, Cook Children’s Hematology/Oncology clinical therapist. “Play therapy creates a sacred space for children to be empowered in a world that can feel scary and complex, especially if they are navigating medical treatments that accompany diagnoses such as ALL. During a play therapy session, the clinician has the honor of walking alongside a child as they express their deepest thoughts and emotions via tools such as toys, art or a sand tray. Through play therapy, you get a glimpse of a child’s inner world, and the healing that takes place in this process is truly a beautiful thing to watch unfold.”

Play therapy isn’t just healing Perry’s mind and spirit during treatment, it’s also preparing her for the life that comes after.

“She's just been subjected to so much at such a young age, and she doesn’t know how to articulate that,” Ashley said. “I’m so thankful Dr. Pacenta referred her to play therapy. They're really caring for her as a whole person and supporting all of her needs because they want her to ring her bell and finish treatment and be a normal, healthy, happy and thriving kid in kindergarten. It's just meant a lot to me as a mom that they care about her.”

Even with Perry’s favorable response to treatment, her journey hasn’t been without its complications and setbacks, Ashley says. What they once called spunk and sass, they now recognize as the spirit of the warrior Perry has proven herself to be. Their eyes remain firmly fixed on the prize ahead—that ever symbolic and special bell-ringing day.

“It still feels surreal sometimes, but at the same time, we've been at this for so long now that I literally forget what life was like before we were the cancer family and Perry was the cancer kid,” Ashley said. “It's a rollercoaster of emotions of grief and joy that we've been able to experience even on the hardest days. And to see Perry's resilience, it's just totally changed our family. Turns out, she’s a real warrior.”

And then her parents pick up their little princess. She straightens her long wig and they head to the elevator, back to her room at Cook Children’s. It’s time for another round of chemotherapy as this 2-year-old fights one of the rarest forms of cancer known to science.

The reality of Kennedy Coke’s life may be even more of an adventure than her hero, Elsa. Even Disney’s Queen of Arendelle never faced the challenges of this little girl.

In late November 2015, Kennedy coughed all Saturday night and was running a fever on Sunday.

Of course these things always happen over the weekend and her parents, Wes and Jodi, decided not to wait until Monday to take her to their Cook Children’s pediatrician, Catherine Hampton, D.O. Instead, they took her to a nearby walk-in clinic, expecting to be in and out with an antibiotic.

Kennedy received a slew of tests for strep, flu and RSV. They all came back negative. Jodi became frustrated when they asked for a lung X-ray. But she gave the go-ahead just in case her daughter had pneumonia.

The X-ray came back inconclusive on pneumonia, but it was something else that left Jodi and Wes devastated.

“The X-ray showed us the picture,” Jodi said. “We learned later that it was a collapsed lung and that’s what looked like pneumonia. But they said, “Up here, there’s a mass and then we basically fell apart.”

The mass was on the upper right lobe of Kennedy’s lung. When Wes and Jodi returned home somewhere around 6 p.m., they called the nursing triage line offered to Cook Children’s patients. The nurse on the line comforted Jodi and made an appointment for Dr. Hampton at 10 a.m. the next morning.

Little did the family know they were beginning a journey that mirrored another tale beloved by children around the world. They would learn the true meaning of heart, brains and courage.

And they would learn there truly is no place like home and sometimes home can mean a children’s hospital that a little girl swears is her castle.

Heart

Wes and Jodi came home that evening and called their employers to let them know they wouldn’t be coming in to work the next day.

Dr. Hampton examined Kennedy and sent the family to Cook Children’s Northeast Hospital for new X-rays and examination. The images showed that Kennedy never had pneumonia and it was a collapsed lung that was causing her problems with coughing and breathing.

Unfortunately, it also confirmed the mass.

From Northeast, the Coke family headed to Cook Children’s Medical Center. Nancy Dambro, M.D., a Cook Children’s pulmonologist, discovered the lobe of Kennedy’s lung had probably been nonfunctional since birth.

Perhaps, it’s only purpose was to help doctors find the mass and in the process, save Kennedy’s life.

On Dec. 8, 2015, Jose Iglesias, M.D., FACS, FAAP, a pediatric surgeon at Cook Children’s performed the surgery that ended up taking Kennedy’s whole upper lobe of her right lung.

Doctors expected the mass to be a part of the congenital lung cyst, similar to what her father had removed when he was 18 years old.

But there was a 1 percent chance it could be a rare form of cancer known as Type II pleuropulmonary blastoma.

Most surgeons never see a case in their career. Only seven cases have been seen at Cook Children’s since 1992 and only about 470 total cases have been diagnosed in the world. Ever.

That would be the worst case scenario and that would be what the doctors found.

Wes and Jodi watched surgeons walk down the hallway that led to the waiting room. They saw thumbs up being given to other parents and they saw hugs and tears of joy. But the moment they saw Dr. Iglesias walking toward them, they knew the news was not good.

Dr. Iglesias told Wes and Jodi it looked like it was the rare form of cancer, but they would know for sure the next day.

On Dec. 9, while Kennedy was sleeping, Dr. Iglesias came in and crouched down next to the family.

“For the record, we love Dr. Iglesias,” Wes said.

“He’s another person at Cook Children’s who saved our daughter’s life,” Jodi said.

But that’s today. A year ago, the couple remained in a constant blur of bad news and confusion.

“We had our breakdown. I remember immediately saying things like, ‘I’m going to shave my head.’ What? I just didn’t know what to do,” Jodi said. “Thankfully, my mom was there and she was a lot more level headed than we were at the time. She was the one writing things down. I remember a chaplain was there. That was so impactful to me. She was the chaplain for the recovery room and she just stood there, with us.”

Within minutes after being told it was cancer, the family was whisked off once again. Kennedy was taken to the Hematology and Oncology floor of Cook Children’s. The night of Kennedy’s diagnosis, the phone rang in their room.

“Jodi, it’s Dr. Hampton. I’m coming out there. I’ll be there.”

“Dr. Hampton has been very supportive of our family,” Jodi said. “When she came out here, she brought her Bible with her. She never opened it, but just held it. She said, ‘I don’t even know what to say to you guys.’ We were her first patient in her practice who had cancer. I think it hit her pretty hard. But she’s been just amazing ever since. We text her every time we have an update with our scans. She always replies back. We love her.”

On the day of the diagnosis, Wes and Jodi met a new doctor. Anish K. Ray, M.D., became Kennedy’s oncologist and has been at the head of her care ever since.

If you want Kennedy to open her arms up wide and see her smile real big, tell her she’s going to visit Dr. Ray. Every time he walks in to her room, Kennedy demands a hug.

“He always says, ‘No one is ever happy to see me. This is great,’” Jodi said.

Jodi laughs at the time her burly 6-foot, 6-inch, bearded husband picked up “this distinguished” doctor to give him a big hug after Dr. Ray gave the good news that their daughter showed no signs of cancer.

“He’s my best friend,” Wes said. “He doesn’t know it, but he’s my soulmate now.”

Brains

During her surgery, Dr. Iglesias removed the mass that turned out to be a cyst. Inside the cyst was a tiny tumor.

A couple of days after the surgery, a full body scan from brain to pelvis showed no evidence of cancer. But to continue to fight off the threat of the cancer returning, Kennedy began her first of 12 courses of chemotherapy that ended on Aug. 24, 2016.

“We’re fighting the hypothetical,” Wes said.

With the fight underway and the family winning it so far, the Cokes began to explore their daughter’s rare form of cancer. While plenty can be found on leukemia or neuroblastoma, Type II pleuropulmonary blastoma is a mystery to most, including the medical field.

Jodi and Wes say they belong to a Facebook support group with only about 170 people on it.

Kennedy’s chemo was given in accordance with the International Pleuropulmonary Blastoma Treatment Study. Dr. Ray's expertise has prevented the family from traveling to another part of the country for care.

“Most children’s hospitals would never see this type of cancer once and Cook Children’s has seen it seven times,” Jodi said. “They have more experience than most and we trust Dr. Ray so much. It’s a relief for us because we didn’t have to pack up and move to Houston or New York or Memphis. Dr. Ray told us, ‘I wouldn’t hesitate to transfer you, but this is the best place for you all. We all share information, so you don’t have to pack up and move.”

Because of the rarity of Kennedy’s disease, the family was approached to be a part of another important research study, ABTR01B1 from Children’s Oncology Group to learn more about her form of cancer. The study collects and stores samples of tumor tissue, blood and bone marrow from young patients with cancer to study in the laboratory to help the study of cancer in the future. They didn’t hesitate to say yes.

“It’s not necessarily even going to help her,” Wes said. “But there are kids running around right now, wherever, and they’ve got cancer and don’t know it yet. There’s always going to be kids with cancer. If we can provide even a slice of help or even be able to be a part of something that helps some other family’s child have an easier time of it or even possibly get a cure … Who knows? I guess that help is what we have to offer.”

Wes and Jodi can’t believe they’ve gone through this, but they have made it together. They call their tragedy a faith shaker and they admit to being angry at God after the diagnosis. But they have made it, with their faith and their marriage intact.

“It has thankfully brought us really close together as a couple,” Jodi said “Even though we are polar opposite people. We’re very different from each other. We’re the typical opposites-attract couple. We process things much differently. His fears will be very different than my reaction and my fears will be very different than his. We know people whose marriages have ended through pediatric cancer. You can certainly see why.”

“You can grow apart or you can grow closer,” Wes said. “It has brought us together as a family. You love your kid more every day. You can’t believe the depth of love you have for your child when you see her go through this.”

Courage

Kennedy turned 2 years old at Cook Children's. She also celebrated Christmas at the medical center.

"It was all pretty overwhelming, but in a good way," Jodi said. "To be at Cook Children's at Christmas was really special. Kennedy had her first chemo on a couple of days before Christmas. She was just overwhelmed. People brought her gifts and there were so many decorations. She loved it. How decked out it was and there were so many special things going on at Cook Children's that it got us through a very difficult time."

Shortly after Christmas, the Coke family returned home where everything was so different, but yet the same. They still had their same "hilarious, goofy, chatty" little girl. But things were different now, too.

Kennedy plays doctor knowing a bit too much about how stethoscopes and heart monitors work. She's spent so many days at the medical center with really smart people, her parents say she has an incredible vocabulary for a child who is not yet 3 years old.

And, she owns a castle.

When she has an early morning appointment to Cook Children's, she sometimes doesn't wake up in the best of moods. Until she's told it's time to head to her castle and then she's wide awake.

"She used to have long hair. Long enough to be in pig tails. She sat there, eating jellybeans and watching Frozen while we shaved her head," Jodi said. "We were all crying and she couldn't have cared less."

Kennedy's hair is returning. Peach fuzz is underneath her Elsa wig that she wears even to bed on some nights.

"All signs are pointing to good," Wes said. "At first, we were the worst case scenario and now ... And now, we're the best case, worst scenario."

For now, the Coke family has been through the tornado, dropped the house on the wicked witch and returned home.

Even if it's a medical center that saved a little princess' life.

#erasekidcancer

To support kids like Kennedy and the Cook Children’s Hematology and Oncology Center, visit erasekidcancer.org. September is Childhood Cancer Awareness Month. This month, we're pulling back the curtain to share what Cook Children's is doing to fight pediatric cancer. Stories will be shared to reflect the hearts of our caring professionals and volunteers, the brains of our clinicians and researchers and the courage of our patients and families.

In October of 2012, at the age of 16, Tori was diagnosed with Ewing Sarcoma stage four cancer in her left pelvic bone. From the beginning of her journey with cancer, the Mansfield, Texas native decided that her only option was to keep moving forward. Amidst the confusion of being diagnosed with cancer and admitted to Cook Children’s as a teenager, Tori found comfort when her father told her about the newly opened Child Life Zone Music and Recording Studio.

“If I had to be anywhere, I’m glad it was here. They do a really good job at trying to make a children’s hospital more accommodating to young adults. It’s awkward being in the middle of a child and a young adult but Cook Children’s made me feel like I didn’t have to sit in my room and go through this journey by myself.”

Tori received chemotherapy and received medication for her treatment every other week, 3 to 5 days for the span of about a year. Halfway through her treatment, she also received radiation on her left pelvic bone for about two months.

Karen Albritton, M.D., a Cook Children’s pediatric hematology-oncology doctor and medical director of the Adolescent and Young Adult Program, oversaw Tori’s cancer treatment. Artee Gandhi, M.D., medical director of Pain Management, helped Tori with any discomfort or pain she felt during her treatment.

As her time continued at Cook Children’s, Tori spent many hours in the Child Life Zone Music and Recording Studio, pursuing her passion for music. “The music studio is great, even for kids that don’t have life threatening illnesses, it’s just a good way to go in there and have fun.”

Tori recently turned 19 years old and has been in remission for two years. “My life is all about music. It has always been something that has gotten me through the good times and bad.” She continues to pursue her passion for music by performing for various charities. Tori has even gotten the incredible opportunity to meet some of her favorite artists, including Joan Jett, Miley Cyrus, Roger Daltrey, lead singer of The Who, and Garth Brooks. She hopes to one day meet Stevie Nicks.

Through her battle with cancer, Tori learned the importance of living each day to the fullest. “I encourage people to keep moving forward and live your life the way you want it, because you don’t have all the time in the world. Don’t wait to do something you want to do, make it happen.”

About #erasekidcancer

If we had one wish it would be that no child would ever have to fight cancer. That's why we're asking you to join forces with Cook Children's oncologists, researchers, patients and families to help make that wish come true. There's a lot we can do, so let's spread the word to help make childhood cancer disappear.

The funds we raise together will support life-saving research, treatments, technology and programs for the young patients and their families at Cook Children's in Fort Worth, Texas. What we do today will help #erasekidcancer for future generations.