All for One

Just a few months before Elliana’s diagnosis, the Reyes’ relocated from their urban North Texas home to their rural Oklahoma property, where they planned to take a year-long hiatus from city life. They wanted to homeschool their children, and slow their pace to one more suitable for savoring family time. While cancer changed their plans and their location, it didn’t change their hearts. 

The family determined that they would be as purposeful in their time together helping Elliana beat cancer as they had planned to be at their Oklahoma getaway. They would walk this road together and all for one. 

By day, Leόn, Lauren, their 15-year-old son, Micah, and 9-year-old daughter, Bella, joined Elliana at the hospital, where the two oldest continued their homeschool studies. 

“It wouldn’t have been safe for them to go to school,” Lauren said. “With Elliana’s condition and the danger of exposing her to germs, they would have had to choose between school and being with Elliana. So we just continued our plan of homeschooling for the year, which ended up being a gift for our family.” 

Once Elliana was asleep for the night, Leόn, Micah and Bella would retire to their room at the Ronald McDonald House just down the street from the hospital while Lauren remained at Elliana’s bedside. Micah and Bella became well-known fixtures on the Hematology/Oncology floor and throughout the hospital. Whenever Bella played in the halls of the unit, young patients came out to join her. Little did the Reyes family know, Bella’s magnetic energy was actually helping patients in their recovery. A doctor told them as much the day Elliana was discharged. 

“A doctor came to us in tears and said they were going to miss Bella,” Leόn said. “The reason being, the doctor said, is they try to get these kids to get out of the room to walk around. They have to move their body and can't just sit in the bed, but they can’t always get them to agree to do it. Chemo is tough on the body. But Bella used to have this little play stretcher and she would put her doctor gear on and walk the hallways. The doctor said as soon as the kids heard her voice, they all suddenly felt well enough to come out to the hallway and play.” 

Micah, a budding musician and athlete, could often be heard playing the piano in the atrium, and found a grassy corner of the campus to practice his football drills. He even endeared himself to Cook Children’s Medical Center president, Stan Davis. 

“Micah loves baseball and football,” Davis said. “I saw him on many occasions during their stay and he would always greet me as Mr. Stan and give me an update on his training and how his family was doing. The last time I saw him, he ran up to me with the most excitement I had ever seen from him and said, ‘Mr. Stan, my sister is ringing the bell this week. She is going home.’ I hugged him and it brought tears to my eyes. They trusted Cook Children’s and our team fulfilled our Promise!”

Supportive Therapies Help Heal

 Elliana’s parents say hearing the word “cancer” was a gut punch. Leόn had already walked this road with two brothers who had cancer, one who survived and another who passed away. For Lauren, who follows a natural and holistic approach to health and well-being, the thought of injecting chemotherapy into her baby’s body was difficult to reconcile. 

“I’m very holistic by nature, so it’s really hard for me to wrap my mind around the fact that I’m about to give my baby these extremely high-powered drugs that also require a series of other drugs on top of that because her immune system is so compromised,” Lauren said. “I had to go from zero to 1,000 with all of the medications that I had to sign off on for my baby. It was just overwhelming.” 

Elliana’s care team met the family, their fears and their many questions with compassion and understanding. They not only took the time to listen to the family’s concerns and explain the necessity of each treatment, but also encouraged the use of a host of complimentary mind and body therapies provided at Cook Children’s, such as acupuncture, music therapy, aromatherapy, visits from the medical center’s therapy dogs, as well as integrative vitamin and nutritional support. 

“They offered a lot of holistic things that align with who we are as a family that we were able to do in conjunction with everything else,” Lauren said. 

The family particularly enjoyed the Laughter League, a troop of playful clowns who travel the hospital with the sole purpose of inciting smiles. After all, laughter is the best medicine, and play is a child’s universal language. 

Leόn, Lauren, Micah and Bella worked together to keep Elliana’s spirits up, too. When Elliana had trouble keeping food down during chemo treatments, Micah would make her laugh to take her mind off of her nausea. Bella pulled her around the medical center in the wagons reserved for patients undergoing treatment. Leόn, a musician, would often pull out his guitar and sing to her. 

“Every time she saw the guitar come out, she would immediately calm down,” Lauren said. 

When the family needed uplifting, there was help for them, too. 

One evening, two members of Cook Children’s security team ran into Leόn and Micah playing guitars and singing worship songs atop a medical center parking garage. Following that encounter, the security team went out of their way to find Leόn a safe and solemn space where he could play his guitar and sing. 

Music was medicine for Leόn’s aching heart throughout Elliana’s treatment. He even wrote several songs about the family’s experience while Elliana was in the hospital. Leόn recorded one of them, called “The Unknown,” in Cook Children’s Sparklefly Recording Studio with the help of Raymond Turner, Sparklefly Recording Studio producer, and Sonny Burgess, Texas Country Music Hall of Famer and Cook Children’s director of Clinical Arts. When new patients arrived on the unit, Lauren says Leόn played the song for every parent who looked lost in a new diagnosis, and it uplifted many people along the way. “The Unknown” music video can be seen here. 

“Cook Children’s treated our family like their family,” Leόn said. 

When Leόn and Lauren needed to focus their full attention on Elliana’s care, Cook Children’s volunteers stepped in to help support Micah and Bella. 

“It was amazing how the volunteers loved on our kids, and our kids had a blast with them,” Leόn said. “They'd come up to the Oncology floor and were kind of like grandmas taking care of our daughter.” 

One even played the patient while Bella pretended to take her vitals, draw fluids and insert a central line that Bella had drawn on paper and cut out—all things she learned from watching nurses take care of her little sister. 

Even with all of the support, the journey was not easy. There were so many ups and downs that Leόn and Lauren say it felt like a rollercoaster ride where they could do nothing but hold on tight, while trusting the doctors and care team to keep Elliana’s treatment and healing on track.

Seasons Come and Seasons Go

On May 5, 2025, following her last round of chemotherapy, Elliana rang the bell on the Hematology/Oncology unit signaling the completion of her treatment. Her cancer is in remission. Elliana’s prognosis is excellent. According to Lauren, she has a greater than 90% chance that her cancer will not return. 

During a recent follow-up visit with Elliana’s specialists, the family watched as the giant pumpkin in the medical center’s circular courtyard was inflated—a small preview of the holiday magic Cook Children’s brings to life each year. 

“Last year we celebrated every holiday in the hospital and watched the decorations for every season go up in the circle. The giant turkey, Christmas lights, Valentine’s Day decorations, Easter eggs, and it all started with the big pumpkin when we first arrived at the hospital,” Lauren said. “Now, the big pumpkin is back a year later, and it’s like we have come full circle. Even though things are not quite back to normal this year, we’re grateful to be able to spend every holiday outside of the hospital. But we still look back and remember how magical Cook Children’s made those holidays and can say we had a very good year of celebrations while there. It was so beautiful.” 

The family has yet to return to Oklahoma, except for a brief visit. It was surreal, Lauren says. 

Their lives had changed forever, yet with last year’s Halloween decorations still hanging in the trees, their land appeared untouched by time or by the trial the family had endured. 

“It felt like a year was just gone, but also a reminder of all we lived through,” Lauren said. “It was a hard season but we look back on it now and are so grateful for how it knit our hearts together.” 

Now on the other side of that sharp and unexpected detour their lives took one year ago, Leόn and Lauren say they clearly see the beauty that rose from the ashes of cancer. Not only did it strengthen their faith, but they accomplished what they originally set out to do during their break from city life—draw closer together as a family. 

“Going through something as profound as cancer reminds you of what's really important,” Lauren said. “Prior to this we had a thriving business and a great life, but none of that matters when you're talking about one member of our family possibly not making it. It just shifted our every focus, and it fundamentally and foundationally challenged us as a family to get back to what is rudimentally important.” 

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.”

Just a few years earlier, orphan trains rumbled through Texas towns, carrying vulnerable children westward seeking new homes and opportunities. In Fort Worth, amidst the challenges of a growing frontier town, individuals and families opened their hearts and homes to these children. Some specifically chose to take in the sickest among them, the ones with special needs, or those whom others might have overlooked. It was a poignant time in the nation’s history, but that legacy of compassion would soon inspire a new kind of home for vulnerable children—a place devoted to healing and to a Promise to improve the health and well-being of all children in its care and communities.

A lot has changed in a century. Orphan trains are a thing of the past, replaced with child welfare services that aim to keep children safe and families together if possible. Camp Bowie is now a boulevard bridging history and commerce; the Stockyards are an entertainment hotspot showcasing cowboy culture; and Fort Worth’s population is nearing 1 million, making it the 12th largest city in the country.

But one thing remains the same. The spirit of embracing the vulnerable and offering hope to those most in need still runs deep in the heart of this community. Through all of Cowtown’s transformations, Cook Children’s has risen to meet the needs of the moment—expanding its campus, evolving its technological capabilities, and adding services to improve the health and well-being of all children in its care.

Today, Cook Children’s begins a new chapter in its 107-year history of hope and healing by breaking ground on the site that will soon see the rise of a new 760,000-square-foot patient care tower, currently referred to as the West Tower.

“About 59 people move to this area every day,” said Stan Davis, president of Cook Children’s Medical Center – Fort Worth. “To keep pace with this unprecedented growth, we must also expand. This isn't just about getting bigger. It's about ensuring we can continue to be that steadfast home for every child who needs us. It's about equipping our exceptional doctors and nurses with the leading-edge tools they need, providing a comforting space for our tiniest patients, and offering a sanctuary for our sickest children.”

Expanding the Blue Peaks
The addition of the West Tower will enhance Cook Children’s Heart Center, already home to the nation’s top pediatric cardiologists and cardiovascular surgeons. The growth, which includes two new dedicated cardiovascular operating rooms, paves the way for Cook Children’s surgeons to perform life-saving heart transplants.

The West Tower also makes way for the expansion and redesign of Cook Children’s Pediatric Intensive Care Unit (PICU). Designs for the new PICU focus on two key elements for supporting healing and improving the patient and family experience—sunlight and privacy.

Over the past decade, studies have shown that a lack of natural light and loud environment can increase the risk for what doctors call ICU delirium, according to Kyle Brown, M.D., PICU co-medical director. It is a common occurrence in intensive care settings, especially those like Cook Children’s current 20-year-old PICU where there are few private rooms and natural light is hard to find.

“Some kids that come into the ICU after a serious injury are thinking clearly and know 100% where they are and who their family is. Mentally, they are their usual selves,” said Linda Thompson, M.D., co-medical director of Cook Children’s PICU. “Then, with a few days of not sleeping well, with pain medicine on top of that, and being stuck in bed, they can start to get confused. They don’t recognize people as well and they can start to see things that aren’t there. This is considered ICU delirium.”

One Patient’s Experience
For former PICU patient Emerson Bellucci, it only took 24 hours for the delirium to set in.

In 2024, Emerson spent 36 days in Cook Children’s PICU following a rare and life-threatening allergic reaction to the common antibiotic Bactrim. The reaction damaged her lungs so severely she required life-support via extracorporeal membrane oxygenation, or ECMO. It is the most advanced form of life support available. Essentially, an external artificial lung. A pioneer in her own right, Emerson was one of very few patients to remain awake and even walk around while on ECMO. Most are fully sedated during this life-supporting treatment.

In the initial days of Emerson’s PICU stay, she and her family shared space with 42 others healing from severe and traumatic injuries and illnesses. In her case, Emerson was separated from neighboring patients only by a curtain. The sights and sounds of every other patient’s monitors, machines, televisions, and even the cries of an infant patient, often interrupted her sleep and added to her own anxiety about her illness. The lack of natural light caused her to confuse her days and nights.

“There were no windows to notice it was night and we were supposed to be sleeping,” said Ashlee Bellucci, Emerson’s mom. “I think that was the beginning of her delirium that really set her pattern to where she was up a lot at night. As a mom, you’re up with her, too. So it was hard.” 

Despite the best efforts of Cook Children’s PICU staff to institute daytime quiet hours for napping, simulate nighttime hours with low light settings, and minimize disruption while caring for a neighboring patient, the scenario described by Dr. Thompson and experienced by Emerson happens over and over again.

“When we have increased delirium, that increases the length of time that patients spend in the ICU and the length of time that they spend in the hospital,” Dr. Brown said. “It also leads to what we now call post-intensive care syndrome, which is something that both patients and families can experience after they leave the ICU. This includes things like PTSD and anxiety.”

Once Emerson was placed on ECMO, she was moved to a more private, enclosed space in the current PICU. While it had a small window that helped regulate her sleep, it did not have a private bathroom. Emerson’s parents still had to trek to the family waiting area for showers and restroom breaks.

“Having to walk down the halls in my pajamas to the bathroom was very inconvenient,” Ashlee said. “But I think one of the hardest things was shower time. Her dad and I had to plan showers around when doctors would be visiting so that we could be sure one of us was there. I felt like a college kid in a dorm taking all my things, and having to go down and sometimes wait for a shower. Inevitably, you would forget something.”

The design of the new PICU aims to change that.

“Instead of making families feel like they're coming into our place, we need a way to make it feel more like home for them and more like we're actually entering their space,” Dr. Brown said. “That's really what creates a more healing environment for the patient and family,” Dr. Brown said.

Hope Lights the Way
In the redesigned PICU, every patient will have a fully enclosed private room with a window, as well as a private bathroom. A sliding glass door with a curtain for privacy will shield patients from the sights and sounds of their neighbors’ care and machines, while allowing the medical team to keep a close eye on their patients. Quiet sleep will go uninterrupted by the commotion of a middle-of-the-night admission of a new neighboring patient. Parents and young patients can focus on their own healing without the added trauma of witnessing the circumstances of others. When the sun rises, patient rooms will be drenched with natural light, awakening their souls to the hope of a new day.

“I think the first time I noticed the little window it just reminded me of outside and that I won't be stuck here forever,” Emerson said about the more private ICU space she was moved to while on ECMO. “Having a window definitely increased your mood. Having sunlight is just like a happy thing.”

New Frontiers
The West Tower will be a place where Cook Children’s charts new frontiers in medical research, ensuring that every step forward in patient care is informed by the rigorous pursuit of knowledge. While Cook Children’s already has 300 open clinical trials, as well as 500 ongoing studies, the expansion of services like Cardiology and Pediatric Intensive Care opens new doors for even more research that advances medicine and shapes the quality of care.

Take cancer treatment, for example. Over the past 50 years, research-driven protocols have decreased the five-year mortality for Acute Lymphoblastic Leukemia—the most common pediatric cancer— from 80% to 5%, according to a 2021 article published in the Journal of Clinical Medicine.

“The centers that do research have higher, better quality numbers than the centers that don’t," said William Stigall, M.D., Cook Children’s chief research officer. “Research is one of those things that make you better at everything, and the robust space and technological capacity of the new tower will give us the capacity to do even more.”

Design Through the Eyes of Others
Planning and design of the West Tower is a collaborative effort between staff, patients and the design and construction teams.

“We have thought long and hard about what is important to us and our patients,” said Melodie Davis, DNP, RN, CENP, Director of PICU, ECMO and Dialysis at Cook Children’s. “For several months we have gathered input from our team and our patients. Bringing together evidence from literature on how PICUs can create healing environments with our lived experiences and collaborating with the construction team is truly a dream come true. Our patients, their families, and our staff have so much to look forward to.”

Today, Emerson and her family joined Cook Children’s executives, members of the board of directors, city officials and community supporters to turn the first shovels of dirt on the site of the future West Tower. Construction is expected to take five years.

“This groundbreaking of the West Tower is not just the laying of concrete and steel. It is a powerful continuation of the pioneering spirit,” said Rick Merrill, president and CEO of Cook Children’s Health Care System. “It is a tangible manifestation of our enduring commitment to the future, a bold step driven by the same courage and vision that defined Fort Worth from its earliest days.”

Fast Facts

• The West Tower will seamlessly integrate with the existing medical center floor by floor.
• The services/units moving to the West Tower will make way for the expansion of Hematology/Oncology as well as the Neonatal Intensive Care Unit, which will grow from 106 beds to 143.
• The Heart Center will gain two new operating rooms, a third cardiac catheterization laboratory for advanced diagnostics and interventions, 14 additional cardiovascular intensive care beds, as well as a new Step-down Unit for transitioning care as heart patients heal. All Heart Center inpatient services will be conveniently located on one floor in the new tower, from procedure prep spaces, to operating rooms and special procedure areas, to the Cardiovascular ICU and Step-down Unit.
• In addition to the Cardiovascular Operating Rooms, the West Tower will house eight new operating rooms. Two will be specifically equipped for Orthopedic surgery and two for Neurosurgery.
• The redesigned PICU will feature 56 private patient rooms with private bathrooms.
• Anticipating future growth, shell space will be included in the build.

March is Blood Disorders Awareness Month, a time to shine a spotlight on patients living with bleeding disorders like hemophilia, a rare genetic disorder in which the blood clots either slower than normal or not at all. Patients receive medication through IV, port access, or subcutaneous injections.

Hemophilia Care at Cook Children’s
Kerri Bond’s family is significantly impacted by hemophilia as her father, her daughter Adeline and her son Benjamin live with the condition. As a gene carrier, Kerri has experienced the condition’s realities firsthand. This personal experience shaped her approach to her children’s care.

Kerri’s father met Timothy McCavit, M.D., a hematologist who directs the Bleeding Disorder Program and Hemophilia Treatment Center at Cook Children’s, while volunteering at Camp Ailihpomeh, a Texas camp for children with hemophilia. This connection led Kerri to seek treatment for Benjamin and Adeline at Cook Children's after her family moved from Virginia to Waco, Texas.

“The care we get at Cook Children’s and the Hemophilia Treatment Center team is phenomenal and worth every mile of the trip,” Kerri said. “Dr. McCavit’s nurse practitioner, Katie, is also so great about checking in on us and the infusion team at Cook Children’s is exceptional!”

The Hemophilia Treatment Center care team aims to help patients understand that hemophilia is a part of who they are, without letting it define them.

“We try to help patients live a full life and be who they want to be, supporting their dreams and goals,” said Katie Carpenter, MSN, RN, CHES, CPN, hemophilia and bleeding disorders nurse.

Like Kerri, Araceli Martinez brought her family for hemophilia treatment to Cook Children’s Hemophilia Treatment Center; however, their personal experiences have been different. Araceli had no idea she carried the gene for hemophilia until her son, Kevyn, was born.

“My life changed,” Araceli said.

Araceli’s family traveled to and from Mexico for Kevyn’s treatment at Cook Children’s until she chose to relocate to Fort Worth to focus on her son’s health.

Living with Hemophilia
“For my whole family, hemophilia is just a normal part of life,” Kerri said. “We often talk about the reality of having a bleeding disorder and how grateful we are living during a time of such easy access to safe treatment.”

After Benjamin’s diagnosis of Hemophilia Type B at birth, Kerri, Benjamin, and Adeline participated in a genomic testing study. The results revealed Adeline had low levels of factor IX, a protein that helps blood clot, and both Kerri and Adeline were diagnosed with mild hemophilia B.

Benjamin receives prophylactic treatment, while Adeline, who has not yet experienced bleeding issues, may require treatment as she enters puberty.

Araceli struggled with the idea of having another child. Ten years after Kevyn’s birth, she welcomed her daughter, Keyra. Despite the 50% chance Keyra would inherit hemophilia, the diagnosis was still heartbreaking.

“It’s been hard,” Araceli admitted. “I can tell you I’m happy now because my kids are doing well. I know that they have a blood disorder, but they are here.”

Today, Kevyn, 26, and Keyra, 16, manage their condition with intramuscular injections.

Connecting with Community
Living with a blood disorder can lead to feelings of isolation. Kerri emphasizes the importance of community support.

“Community is so important,” Kerri said. “I highly recommend getting involved with Texas Central Bleeding Disorders (TCBD), the North Texas chapter of the National Bleeding Disorders Foundation!”

TCBD offers free membership, educational events and retreats. Kerri and her children have formed lifelong connections through these events. She encourages parents to openly discuss bleeding disorders, normalizing the conversation.

“Having a bleeding disorder is nothing to be ashamed of, and while sometimes we need special medicine, we can do anything we want!” Kerri said.

Kerri’s personal experiences with hemophilia have instilled empathy and understanding in her approach to her children’s care. She believes her unaffected son, Edward, will also develop a great sense of compassion.

Araceli echoes the sentiment that hemophilia affects the entire family. While her children continue to thrive, she’s focused on her professional development.

 “As a mother you are affected because of your children’s situation,” Araceli said. “Emotionally I’m impacted because I have a work gap. I believe I’m capable and have potential to contribute to our society.”

She now seeks to help other families become familiar with the blood disorder and develop her own career so she can support her children.

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Viviendo con hemofilia: Un ejemplo de resiliencia familiar

Dr. Greer, who leads the Neuroblastoma Program at the Cook Children’s Hematology and Oncology Center, knows from personal experience what it’s like to receive treatment for cancer at Cook Children’s. She knows how it feels to undergo a biopsy, receive a cancer diagnosis, and experience the toll that chemotherapy takes on the body.

Getting treated for cancer in adolescence even shaped a life goal: She made up her mind that one day she’d work as an oncologist at Cook Children’s Medical Center – Fort Worth, the same place she came for those chemo infusions as a preteen patient.

“My journey's pretty unique,” said Dr. Greer, who joined Cook Children’s in 2023. “I know a lot of people attain their goals, but not too many people say when they're 12 that they're going to come back and be the doctor who was taking care of them. I get to do that, so I feel very grateful.”

At the Neuroblastoma Program, Dr. Greer works to help children and teens the way her doctors helped her. She coordinates a team approach. Treatment options for neuroblastoma include chemotherapy, immunotherapy, transplant, radiation and surgery.

“Many children with neuroblastoma present with advanced stage disease, and it is a very complicated, intensive, long treatment journey,” said Kenneth Heym, M.D., Medical Director, Cook Children’s Oncology. “It takes someone with expertise in that specific area who’s really going to dedicate themselves to this disease and this group of patients.”

Dr. Greer understands that cancer feels overwhelming. But she assures her patients that she and the Cook Children’s oncology team are by their side. They’ll make a plan and take it one day at a time.

Memories of having cancer translate into the empathy in Dr. Greer’s approach. She never assumes she knows exactly what her patients and their families are experiencing. That’s because everyone’s circumstances are unique to them. But her empathy stems in part from what she went through:

• Initial uncertainty about what was causing her symptoms
• Long drives from West Texas for five rounds of chemo
• Lodging at Ronald McDonald House and extended-stay hotels
• Several hospitalizations from complications

Dr. Heym points to Dr. Greer as an inspiration for the accomplishments that pay off through diligence and determination. Dr. Heym uses the word “amazing” to describe the colleague he met long before she earned her medical degree.

“She comes off as somebody who has been doing this a lot longer, both in her knowledge base, which is incredibly extensive and shows her dedication to study, and in her clinical skill and the way she carries herself and leads her team,” he said. “It’s clearly beyond what you’d expect from someone at that stage in their career.”

Dr. Greer took a fast track through high school and college before graduating in 2016 from the Texas College of Osteopathic Medicine (TCOM). She went on to do a pediatric residency and research into the long-term risks of cancer medicines for certain patients.

Dr. Greer also sees patients with other types of cancer in the medical center or the outpatient clinic. She derives her passion as a physician from the relationships that develop in an environment of stress and vulnerability.

“That's really why I do what I do,” she said. “Because we care so much, we're going to take great care of the child. The bonds form really strong, really fast, and that is important to help them through everything.”

September is National Childhood Cancer Awareness Month, which gives us the chance to spotlight Dr. Greer's unique expertise. She sees the patient perspective through a lens of awareness and extra sensitivity. Because she’s been there.

Hodgkin’s Lymphoma

Chelsee Greer was an athletic and studious seventh-grader who played soccer, ran cross country, and did homework late into the night. She kept such a busy schedule that her parents weren’t initially worried when she became extremely tired in March 2002. But then came a low fever, night sweats, swollen glands in her neck, and unexplained weight loss. Her first doctor suspected a case of the flu or mononucleosis.

Her fatigue got worse. At school she was so exhausted she would nap in the locker room during lunch. After the school year ended, she slept through much of a family trip to the beach.

“My mom was like, ‘Something’s really wrong,’” Dr. Greer remembers. Another doctor in Odessa ordered a CT scan, and when the results came back, he summoned the family to an evening meeting in his office. The CT scan pointed to lymphoma, the doctor said. They’d need a biopsy to be sure.

Those words didn’t make sense to Dr. Greer at the time. But she figured it wasn’t good news. Her parents were crying. They had to leave for Cook Children’s right away.

So the next morning the Greers drove four and a half hours to Fort Worth. A lymph node biopsy confirmed she did indeed have cancer. Dr. Greer was one of about 8,600 people in the United States diagnosed each year with Hodgkin’s lymphoma, a type of cancer involving the immune system.   

Lymphoma had spread throughout her abdomen and pelvis. The fatigue, fever and other symptoms were her body’s inflammatory response. Doctors at Cook Children’s planned to treat the cancer with five rounds of chemotherapy followed by radiation.

W. Paul Bowman, M.D., became Dr. Greer’s primary oncologist. He remembers her as a 12-year-old with a knack for listening and asking questions.

“She was smart, inquisitive and engaged,” Dr. Bowman said. “She had a sense of commitment and was goal-oriented to put this disease behind her. She was an advocate for herself.”

Dr. Greer saw firsthand how childhood cancer turns life upside down for the whole family. Her mom took a leave from work so that they could make chemotherapy appointments in Fort Worth for a week at a time. Friends, relatives and neighbors pitched in to help her dad take care of her younger sister back in Odessa.  

In addition to the treatments in Fort Worth, she occasionally came for checkups closer to home at Cook Children’s Pediatric Specialties Midland.

“She didn’t feel sorry for herself,” said Julie Jolly, RN, at the Midland clinic. “She just knew this was a hurdle she was going to get over, and her life goals were going to be met.”

There were hard days when Dr. Greer dealt with vomiting from nausea, painful mouth sores and other reactions to the chemo. Her hair fell out. Complications put her in the hospital a few times. She couldn’t attend school in person, so she received homebound instruction for part of eighth grade. But there were bright spots too, including her appreciation for the infusion center nurses.  

“My parents were super amazing. My support system -- my grandparents, my aunts and uncles, my best friend -- definitely made it a lot easier. And I think during treatment it was just kind of like, ‘All right, this is what we're doing.’”

Chemo treatments started in June 2002, and after the fifth round in November, her cancer was gone. She didn’t need radiation after all.

Moving Forward

Dr. Greer graduated from high school in three years. Then, during her summer breaks in college, she volunteered at the clinic in Midland. Jolly taught her how to check vital signs and perform other procedures. She shadowed Dr. Bowman when he saw oncology patients in Midland.  

Dr. Greer went to medical school at TCOM, where Dr. Bowman was a teacher and mentor to his former patient. One of her rotations was at Cook Children’s oncology.

“Maybe she’s matured more quickly because of what she went through, but Chelsee has always seemed kind of grown up. I just have such tremendous respect for her,” he said.  

Dr. Greer did a pediatric residency at Dell Children’s Medical Center in Austin and a hematology and oncology fellowship at UT Southwestern Medical Center in Dallas. Then she joined the oncology staff at Cook Children’s. As Dr. Bowman puts it … she came back to her roots.

Unique Perspective

Surviving childhood cancer became a driving force in Dr. Greer’s life and medical practice. She sets high standards for herself. She advocates for broader access to health care in underserved communities. Because she remembers the anxiety of waiting after a scan or biopsy, she goes out of her way to communicate those results promptly any time of the day or night.

“I think I have an empathy that's built in that you can't be taught,” she said. “I really know what it's like to be waiting for those test results.”

She tells her patients that cancer is a big speed bump in life. And she wants them to know she’ll do everything possible to help get them on the other side of the speed bump. Don’t give up on your goals, she advises.

Dr. Greer stands out for her work ethic, attention to detail, and focus on every patient, Dr. Heym said. She’s already done incredible things in pediatric oncology. And Dr. Heym predicts much more to come.

Grit and aspiration propelled her from her first visit to Cook Children’s -- as a 12-year-old facing cancer – to the same health care system, now as a physician and leader in the fight against the disease.

Dr. Heym describes Dr. Greer this way: “Everything you do, do it right, do it to the fullest, make it worthwhile. And then being able to turn that into a life of helping others.  You can’t think of a more heartwarming story.”

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Boosting Research Toward a Cure for Childhood Cancer

Best Children’s Hospitals list for 2023-2024.

The report, which was released today, uses clinical data to measure patient safety, infection prevention and adequacy of nurse staffing. Out of 284 children’s hospitals in the U.S., only 90 ranked in at least one of the 10 pediatric specialties evaluated. The following Cook Children’s specialties were named among the top programs:

• Pediatric Cancer - #30 in the nation
• Pediatric Diabetes and Endocrinology - #31 in the nation
• Pediatric Neurology and Neurosurgery - #36 in the nation
• Pediatric Orthopedics - #40 in the nation
• Pediatric Pulmonology and Lung Surgery - #48 in the nation

Cook Children's Hematology and Oncology program jumped an impressive 20 spots in the rankings, from #50 in 2022-2023 to #30 in 2023-2024.

 “We are focused every day to improve the lives of the patients we serve and enrich the care of children all over the world. We do this by providing innovative care and contributing to the science of future cancer therapies,” said Donald Beam, M.D., medical director of Hematology and Oncology. “We will continue to strive to improve every day, growing beyond what we are and stepping to the future.”

For Cook Children's Health Care System as a whole, the rankings demonstrate a longstanding commitment to excellence in pediatric care.  

"For more than 105 years, Cook Children's has been committed to improving the well-being of every child in our care. We are honored to see our mission validated yet again by U.S. News and World Report,” said Rick W. Merrill, President and CEO of Cook Children’s Health Care System. “With our newest medical center in Prosper now open, we look forward to making an impact in the lives of even more children and families.” 

Cook Children’s also ranked #3 in Texas and #4 in the Southwest on the U.S. News and World Report “Best Regional Hospitals” list. 

Three-year-old Rylee McLemore and his dad Steven do everything together. Fishing, driving in the Jeep and exploring outdoors are just a few of their favorite pastimes.

“Rylee is a daddy’s boy,” Steven said. “He is my best friend and I’m his anchor.”

Everything changed in October 2021 when Rylee began experiencing fever, fatigue, bruising and a lack of appetite. The family was living in California where doctors assured them it was a viral infection. But two days before his second birthday, Rylee’s mom Amber took him to the Emergency Department because he had stopped walking. Bloodwork revealed acute lymphoblastic leukemia. Rylee’s bubbly personality and constant laughter instantly disappeared as he was in pain.

“It was like all the life in him was gone,” Steven said. “He just wasn’t the same child and hurt all the time.”

Rylee’s parents were determined to find the best hospital to treat him. The oncologist who diagnosed him in California referred him to Cook Children’s and on Rylee’s second birthday, the family flew to Fort Worth.

A couple of weeks after diagnosis, Rylee’s hair started falling out and he would need his first haircut. Steven was working out of state at the time, but this was a milestone he was not going to miss.

“I got there as soon as I could,” Steven said. “Rylee had pretty red hair and I didn’t want him to be scared with everything going on. I decided to get a haircut with him.”

The father-son duo got haircuts together in Rylee’s inpatient room on the Oncology floor – a moment Steven will always remember. The haircuts are just one example of the many ways they have felt supported at the hospital every step of the way.

“We love it at Cook Children’s,” Amber said. “The doctors and nurses are absolutely amazing. I wouldn’t choose any other place.”

Within four weeks of treatment, Rylee went into remission. He is now back to his spunky self and set to finish the 2 ½ year treatment protocol in February. Amber says she had always worried about her husband and son having a close relationship because Steven worked on the road for the first 10 months of Rylee’s life and only saw him once a month.

“It’s amazing to see how close they are,” Amber said. “Rylee always wants to be with his daddy. They really are best friends.”

In April, patient Kaydence Mixon who was diagnosed with leukemia rang the end-of-treatment bell at Cook Children’s Medical Center surrounded by her family, friends and care team.

Following a heartfelt speech from Kaydence’s dad, Justin Mixon, a big dance party featuring a disco ball and pompoms broke out.

After nine months of treatment at Cook Children’s, the precious 2-year-old has proved she’s strong. But Kaydence’s superpower lies in the joy she spreads as she quickly crawls around the floor or busts a move to some music, all while waving to friends and passersby.

Besides showing what it means to be brave and resilient, “she shares happiness and joy without saying a word, which has taught us that anyone can be kind and help others without even saying anything,”  Justin said.

Surprising Diagnosis

On July 26, 2022, Kaydence came to Cook Children’s for some blood tests in preparation for a heart procedure. The next day, she underwent successful surgery to close an atrial septal defect (ASD), or a hole in her heart between the upper chambers. 

Later that day, Kaydence and her family received her leukemia diagnosis. She began chemotherapy treatment two days later.

“It was a rough three or four days, but we worked to understand the ‘whys,’” Justin said. “We’re faithful people and found purpose in it all pretty quickly.”

“God graced us with a child who could handle treatment so well,” he said. “She has done it with a smile on her face, so we’ve been able to do it with a smile on our faces. That joy has been reciprocated by the staff too!”

Source of Sunshine

Kaydence became quite a celebrity during her time at Cook Children’s. She became friends with other patients on her floor in the medical center and built strong relationships with each member of her care team.

To Kaydence, no one at Cook Children’s was a stranger.

“She’s been the source of sunshine for all of us the entire time that she’s been here,” said nurse practitioner Alan Ready. “Even if they’ve never been involved in her care, staff all over the hospital know who she is. It’s a testament to her and her family.”

When asked about his family’s experience, Justin says he and his wife Natasha Mixon are grateful for the employees who made Kaydence’s experience at the hospital more normal and enjoyable.

“Good things can come from bad situations,” he said. “There are blessings along the way if you’re looking for them!”

Sometimes a mother’s intuition can be the difference between life and death. That was true for 7-year-old Ismael Aguilera whose episodes of debilitating headaches turned out to be a life-threatening condition. Ismael’s mom, Karla, questioned the doctor every time she was told he had migraines.

“I knew it was not normal for him to be feeling like that every few weeks,” Karla said.

Ismael went through eight months of episodes including unsteady walking, vomiting, dizziness, sweating, slurred speech and blurry vision. A couple of trips to the local Emergency Department also left Karla and her husband Isack with more questions than answers. Last July, Ismael had another episode, but this time one side of his face drooped down and one side of his body tingled. They once again rushed Ismael to the Emergency Department and pushed for answers. 

Worsening Condition

Ismael’s condition worsened as his mental status rapidly declined and he experienced weakness on his left side. Doctors in their local Emergency Department contacted Cook Children’s and the Teddy Bear Transport team acted fast. Once in the Intensive Care Unit at Cook Children’s, the team intubated Ismael and quickly began testing which revealed he was in a dire situation. Karla remembers hearing the doctors tell her the severity and urgency of Ismael’s condition, but she was in shock and not able to process everything.

“Even though I couldn’t think through it all, I had this feeling that he was going to be fine, and he would leave the hospital walking,” Karla said. “My faith in God got me through.”

They told her that during these episodes he was having smaller strokes but this one was in a different area affecting the basilar artery which can be fatal if not treated immediately. The area included the brainstem which coordinates breathing and maintains alertness. Only an extremely skilled physician can treat this successfully. 

Right Place, Right Team, Right Time

Marcela Torres, M.D., Cook Children’s Hematology and Oncology - Stroke and Thrombosis Program co-director, began treating Ismael with blood thinners to prevent more strokes. She had to strike a delicate balance with the medications – not enough could cause more strokes but too much could cause him to bleed into the vital area of his brain. 

“It is very possible he only had a matter of hours before we would not have been able to save him,” Dr. Torres said. “I remember watching the images of Ismael’s MRI in real time and texting Dr. Gerstle because I knew we needed him right away.”

Ronald Gerstle, M.D., pediatric interventional radiologist at Cook Children’s Medical Center, performed a thrombectomy which came with many risks but was the only chance at saving Ismael’s life. He very carefully removed the clot through a tiny catheter that went from Ismael’s leg to his brain.

“It takes an experienced stroke center with all the resources to perform these procedures in kids this young and in a timely manner so we can save their brains,” said Richard Roberts, M.D., pediatric neurosurgeon at Cook Children’s Jane and John Justin Neurosciences Center.

After the procedure, the team anxiously waited for Ismael to show signs of progress.

“There was a chance Ismael wouldn’t wake up after the procedure,” said Rachelle Herring, M.D., one of Cook Children’s pediatric stroke neurologists who treated Ismael in the ICU. “We were all surprised and thankful to watch him slowly wake up and then talk, move and regain function.”

A Miracle in the Making

After five days, Ismael was extubated. Drs. Herring and Torres checked on him frequently to monitor his neurologic status and assess his level of recovery. Ismael continued to improve at a faster pace than anyone expected. He spent one month in rehab learning to walk and eat again – all while wearing a cervical collar since the doctors suspected his strokes were caused by bow hunter’s syndrome. With this condition, turning the neck compresses the artery and causes strokes.

Two months later, Dr. Gerstle performed an angiogram to confirm the diagnosis. Sure enough, every time he turned Ismael’s neck during the procedure, it began to compress the artery.

Road to Recovery

In January, Dr. Roberts performed a rare procedure fusing Ismael’s head and neck to prevent further strokes. Dr. Roberts placed screws in the cervical vertebrae and a head plate on the base of his skull – operating in an area that was one millimeter away from the artery running through Ismael’s neck.

Since then, Ismael has continued to recover well without any vascular events. In April, he was cleared to remove the cervical collar and continues to follow up with Dr. Roberts and Fernando Acosta Jr., M.D., Stroke and Thrombosis Program co-director.

“He now has an excellent prognosis with a low risk of more strokes,” Dr. Herring said. “His recovery has been miraculous considering where the major stroke was located. We are all so amazed.”

‘Thank God They Knew What to do’

“We needed to be at Cook Children’s all along,” Karla said. “Everyone from child life specialist Madi Mayfield who Ismael called his best friend to nurse Tyler Adair who went out of his way to make him happy with special handshakes and talking about his favorite things to the amazing doctors who got Ismael to where he is today. Thank God they knew what to do.”

Because of the fusion, Ismael will not be able to participate in impact sports or jump on trampolines or bounce houses. This could pose a significant risk of extension or hyperextension of the neck and potentially break the hardware or his bone putting Ismael at risk for strokes again.

But other than that, Karla says he is back to being a normal kid who loves animals, riding horses, playing outside and watching the Steelers play football.

“Ismael has such a caring heart,” Karla said. “I really think God put him on this journey to help others. He has a purpose here.”

To spot the signs of stroke, remember the acronym BE FAST:

Balance - Is there a sudden loss of balance or coordination?

Eyes - Is there blurred or lost vision?

Face - Is one side of the face drooping or numb?

Arm - Is there weakness, numbness or loss of movement in the arms, legs or one side of the body?

Speech - Is speech slurred?

Time - If you or someone you know is experiencing any of these symptoms, call 911 immediately.

The most important thing to know is that strokes happen in children. If something is different or off about your child, seek emergency care.

By Lauren Bridge, MS, CCLS, AYA Child Life Specialist at Cook Children’s Hematology and Oncology Center

Most often, the title “child life specialist” resonates with toddler, preschool and school-aged children. However, our scope of practice spans through young adulthood. I am Lauren, our Oncology Adolescent and Young Adult (AYA) child life specialist. The AYA population includes those diagnosed with cancer ranging from ages 15 to 39.

How is this role similar to other child life specialists?

As a child life specialist, I still provide diagnosis education, procedure preparation, procedural support and general emotional support for coping. All of that education and support is customized to meet the developmental needs of a teenager or young adult.

The medical environment can still be very confusing for our older population and the educational background of a child life specialist allows for breaking down information in easier-to-understand terms.

Let’s not forget play. Play is an integral part of a child life specialist’s role and imperative to coping well in the hospital environment.

What are the unique needs of AYAs?

First, let’s look at the developmental needs of adolescents without a chronic illness. During this stage of development, teens are seeking autonomy, making self-discoveries, learning about their changing bodies and acquiring their own set of values and morals all while their social life becomes a priority.

Throw in a cancer diagnosis and suddenly these developmental needs become increasingly difficult. Autonomy is difficult as caregivers and medical staff are constantly near with instruction, invading personal space. Cancer adds to the confusion of self-discovery. How much of their identity lies in diagnosis or not?

Changes in their body increase as hair is lost, weight fluctuates, menstrual cycles are paused and illness affects their physical well-being. Social life is put on the backburner as immune systems become low, energy decreases and feelings of self-consciousness set in. The sense of invincibility is shattered and many adolescents and young adults question their values and faith during this time.

Looking beyond the age of 18, as AYAs enter young adulthood, developmental needs continue and grow. Young adults continue to seek autonomy and self-discovery, are entering more schooling or the workforce, have increasingly more financial independence and responsibility, are exploring their sexuality, are forming intimate relationships and in some cases are starting families.

Cancer turns these developmental needs upside down. Autonomy is stunted by hospitalizations and the need for help. School or work are disrupted or put on hold. Body consciousness and side effects of chemotherapy become more prominent making exploring sexuality a struggle. As the immune system weakens, emotions run high and the body’s physical exhaustion, many find themselves isolated. Collectively making forming deep relationships challenging.

How can Child Life help?

As an AYA child life specialist, my goal is to help adolescents and young adults cope with new challenges, express emotions, meet developmental milestones and maintain a sense of normalcy.

Recognizing the importance of autonomy, I offer patients as many choices as possible. I, along with our AYA multidisciplinary team, want to give the AYA population a say in what is done to their body. Allowing our patients to share what comforts them, people they want present when ill, how much medical intervention they wish to have and end-of-life wishes give them control in a powerless circumstance.

Most often I can be found holding space in a patient’s room offering a safe place for expression, providing port education prior to the procedure, creating a coping plan with a patient, debating who will win a game of pool, exchanging jokes, giving choices for space and autonomy, validating emotions, creating art and having some deep conversations.

Building trust with the adolescent and young adult population is not always simple. For this reason, I follow the AYA patients inpatient, outpatient and in the ICU. I have to earn my space in their room. I strive to show up consistently and genuinely. It is with a true sense of honor that these amazing young people allow me to be a part of their care. I am forever grateful for this unique population and their trust in me to serve as their child life specialist.

Aiden Snyder responded with determination and positivity when his leukemia came back again and again and again after his initial diagnosis at age 4.

With each relapse, Aiden’s doctors tried a new approach to combat the rogue cells overtaking his bone marrow. Aiden received chemotherapy as well as drugs specific to his type of cancer, along with two stem cell transplants over the years. Another strategy involved tweaking some of his healthy cells in a lab, and then returning the altered cells to his bloodstream to zero in on and kill the cancer.   

The good news? Aiden, now 11 years old, has been leukemia-free since his second transplant in December 2020 at Cook Children’s Medical Center. He still goes in for monthly checkups to keep watch on his blood counts. Doctors are also monitoring the hardened red patches of skin that resulted as a side effect of his last treatment. 

A fifth-grader, he’s back in school and considering a nursing career someday, thanks to the inspiration of nurses who lifted his spirits during his frequent and extended hospital stays. “I just want to help people in that way,” he said.  

In September as we observe Childhood Cancer Awareness Month, we salute Aiden and celebrate the evolving research that makes today’s medical options more promising than ever for pediatric oncology patients.  

“Forty years ago, the hope would've been that they would survive. Now it's the expectation,” said Kenneth Heym, M.D., medical director of the Cook Children’s oncology program. “Aiden is a perfect example of a patient who continued to have the deck stacked against him. But with new emerging treatments and a positive can-do attitude and that desire to move forward, not only is he still here, but he is a success in every sense of the word.”

Aiden’s long battle against an especially aggressive type of cancer – leukemia with a genetic mutation called Philadelphia chromosome-positive (Ph+) – shows his grit, humor and resilience. His providers at Cook Children’s describe a boy with the unusual maturity and smarts to weigh in on medical decisions over the course of his care. Here’s how it unfolded.  

Round 1: Chemo and Meds

In May 2016, Aiden Snyder was a pre-kindergartener living in San Angelo with his mom and dad, Erica and Chris, and little sister Ella. His parents noticed puzzling bruises and a rash; a blood test the next day found that Aiden’s platelet count was dangerously low and dropping fast.  He needed expert care right away, so Cook Children’s sent a plane to fly Aiden and his mom to Fort Worth.  

“He was in scary bad shape,” Erica remembers. The bruises had been an early sign that cancer blasts were multiplying in the marrow, or spongy middle of his bones, crowding out the cells that make platelets. Our bodies need platelets to clot blood and to stop bleeding. “His marrow was packed full of leukemia.”

Aiden’s more resistant Ph+ type of leukemia required intensive chemotherapy with close follow-up at Cook Children’s. Aiden and his mom moved into the nearby Ronald McDonald House for the next 10 months while he completed the first phase of his therapy. In addition to chemo, he received another medication, called a tyrosine kinase inhibitor, which specifically targeted the genetic mutation in his Ph+ leukemia.  

“By combining those medicines with leukemia treatment, we actually have taken the cure rates for Philadelphia positive so much higher,” Dr. Heym said. “By adding these newer medications to chemotherapy, patients are doing much better.”

Aiden lost his hair, got nauseous and struggled with appetite. But he also enjoyed trips to the zoo and the playground when he felt up to it.  “Our outlook from the get-go was, ‘You're not a cancer patient. You're a little boy who happens to have cancer right now,’” Erica said.  

When his intravenous treatments ended, Aiden returned to San Angelo. For the next year, he took three oral chemo pills daily. “That was supposed to seal the deal, just make sure it doesn't come back,” she said. Six months after the final oral chemo pill, Aiden’s leg started hurting.

Round 2: Transplant

The leg pain that Aiden experienced in October 2018 was worse than typical muscle cramps, and Tylenol didn’t relieve the pain. It seemed suspicious, so the Snyders drove to Cook Children’s, where tests confirmed that his cancer had returned. The initial intensive and targeted therapies had failed, and Aiden now needed a stem cell transplant.  

Cook Children’s transplant coordinator Stephanie Tettleton explained that the process starts with intense chemo or radiation to wipe out the patient’s bone marrow before introducing cells from a matched donor. For Aiden’s transplant in January 2019, the donor cells came from stored umbilical cord blood obtained through the national registry.

“Think of it like a garden where you're going to get all the weeds out, get it ready, and then you plant new seeds. The new seeds are that new marrow or the stem cells that grow a new immune system. That's a very basic way to view a stem cell transplant,” Tettleton said.

Cook Children’s performs about 50 stem cell transplants annually. Lindsay Barkley works with Tettleton on the donor end and on patient education. Barkley pointed out that Aiden spoke knowledgeably with his doctors about stopping or starting medications. A positive outlook helped him cope, too.  

“Even when Aiden was going through terrible things, he would come in with a smile on his face,” Barkley said. “It helps to have hope and have a good emotional outlook that you can get through this together.”

Families need to know that because of the child’s compromised immune system after a transplant, he or she must be isolated for a year to prevent infections. Aiden returned to San Angelo and was homeschooled until he was cleared to return to school in person in January 2020. Within just a few weeks, Aiden came down with a horrible headache.

Round 3: CAR T-Cell Therapy

Fast-growing cancer cells were back and had made their way to his spinal fluids, where they clogged the ventricles in his brain and caused the headache. Aiden was flown to Cook Children’s once again. With this relapse, due to the pressure in his brain, Aiden suffered seizures.

“We ended up in the ICU. He was in very bad shape,” Erica said. “I wasn't sure he was going to wake up. And I wasn't sure if he did wake up, if he would be the same kid. He was completely unresponsive. It was very scary.”

Now what? Chemotherapy, targeted medicine and a stem cell transplant hadn’t stopped the cancer, but there were newer options available. The next recourse was CAR T-cell therapy, or chimeric antigen receptor T-cell therapy, which had been approved by the Food and Drug Administration only three years earlier. CAR T-cell therapy adapts the patient’s own T-cell infection fighters to recognize a protein marker on the leukemia cells. The treatment takes about four weeks starting when the patient’s T-cells are removed, then reprogrammed, and then infused back into the bloodstream. 

“It's wild. It's like science fiction,” Erica said, describing the leukapheresis technique that filtered Aiden’s blood to pull out the white blood cells, which were then reengineered in a lab and returned to his body. Aiden underwent the procedure in June 2020 at another hospital (CAR T-cell therapy became available at Cook Children’s later that year). 

While the initial results were promising, within months Aiden’s aggressive Ph+ cells mutated to avoid detection from his T-cells. The cancer was no longer expressing the characteristic protein that Aiden’s T-cells could recognize. In September 2020, a routine blood test revealed a very small amount of cancer that soon began replicating faster than they had seen in the previous relapses. Nine-year-old Aiden was almost out of options.

Round 4: Transplant, Again

Chris and Erica gave their son the freedom to decide what to do next. Devastated and in counseling, he wanted straightforward information about every scenario:

• A second stem cell transplant, which was risky so soon after the first transplant
• A few out-of-state options that offered no guarantee of better outcomes than the procedures he’d already attempted
• Do nothing more, an acknowledgment of the heavy physical and emotional toll the leukemia and treatments had taken

Aiden chose to do a second transplant at Cook Children’s. One of the potential side effects of bone marrow transplant is an immune response where the donor cells recognize the patient’s body as foreign and attack, causing what is called graft versus host (GvH). GvH can affect the patient’s skin, eyes, gut or other body parts, On the plus side, these donor cells can also recognize leukemia calls as foreign, providing a long-term immune response to reduce the risk of relapse, called graft versus leukemia (GvL). In order to better harness the GvL effect, Aiden’s mom was selected because she was a haploidentical, or half-matched, donor.

Erica was admitted as a Cook Children’s patient in December 2020. White blood cells were collected from her through the same process that Aiden’s cells had been collected previously, and the cells were delivered to Aiden in the hospital room next door. As expected, the half-match transplant resulted in the GvH effect, a mixed blessing. GvH showed up in Aiden as a widespread skin rash along with hardening of the skin and joint contractures. Over time and with medication, the GvH is starting to fade.

“The benefit is that the protection from the graft versus leukemia effect should last forever,’ said Richard Howrey, M.D., associate medical director of the Cook Children’s stem cell transplant program and Aiden’s transplant doctor.

“It's unusual to see a patient with this many relapses doing as well as he has been doing,” Dr. Howrey said. “Thanks to new medications which treat GvH and other complications associated with transplants, we're making good progress. Kids who wouldn't have survived in the past are surviving now.”

When you ask Aiden about his hospital memories, he mentions highlights like playing jokes on the nurses; hanging out with the therapy dogs; supervising while Dr. Heym mended a toy giraffe; and talking with anyone about Legos, Harry Potter books and zones of the ocean. “I feel like a lot of it is hard to forget,” he said.

What advice would he give to another child diagnosed with leukemia? “If you get up moving and playing, you won’t think about it as much.”

Child Life specialist Erin Loftus has been one of Aiden’s favorite companions at Cook Children’s since his first clinic visit. When he comes in for checkups these days, they play video games together. Even at a young age Aiden stood out for his ability to voice opinions and observations that shaped his care, she said.

“He's always been really good about telling us what he needs, what he wants, what works, what doesn't work,” Loftus said. “He’s had a very rough road, but because he has been able to speak to the doctors, I think it's kind of helped bridge that gap. He’s not afraid to say he didn’t like how something was making him feel.”

Dr. Heym said the staff appreciated hearing Aiden’s articulate perspectives and insights on how the treatments impacted him.

“This is his body and these are his feelings and his side effects,” he said. “Nobody is going to tell you better what's going on with them than the patient themselves. Being able to get that feedback from the patient lets them feel like a bigger part of what's going on.”

The Snyder family, meanwhile, moved last year to Crowley so they’d be closer to Cook Children’s if another emergency arises. Aiden’s mom now works as a Cook Children’s parent experience specialist. To a mother or father who feels like a helpless bystander in a medical crisis, Erica makes the point that parents are the experts on their own child. “If something doesn't sit right, we want you to tell us that. We want you to ask questions. We want you to be part of the conversation.”

Future of Cancer Care

Cook Children’s is among the research sites where clinical trials are leading to state-of-the-art breakthroughs in cancer treatments. Dr. Heym is excited about advances that hone in on specific characteristics of the disease – to eradicate the cancer, while causing minimal harm to the rest of the body. Medication and CAR T-cell therapy, for instance, are increasingly designed to target just the leukemia abnormalities.

“We have so much more at our disposal now than we did in the past,” he said. “It's ushered in this whole new revolution in oncology treatment where we're trying to get away from the shotgun approach of conventional chemotherapy and go more with the sniper rifle of these targeted therapies.”

Dr. Heym says Cook Children’s incorporates the new advances into a multidisciplinary, comprehensive approach to fighting childhood cancer.  

“We’ve built the kind of foundation here that allows us to provide every patient with the best chance of survival. And that's our goal. Even when we can't cure, we still want to care as much as possible.”

Asked what makes her mighty, Makenzie Chapa flexes her biceps and flashes a smile.

“I have muscles,” she says with an upward tilt of her chin.

Those who meet the precocious 7-year-old would no doubt agree she’s strong. But so much more radiates behind the eyes of “Mighty Makenzie,” a nickname given by family and friends who have rallied around her since last year’s diagnosis of Langerhans Cell Histiocytosis (LCH), a rare cancer in which immune cells attack parts of the body.

Makenzie’s true superpower may lie in the unharnessed joy she emits as she bounces from a chair to grab something off her grandma’s desk, to peek at her baby sister inside a stroller, to dash down the hall and back, all the while peppering nearby adults with one-liners.

Besides showing what it means to be truly brave and persevere, “she has taught me about finding joy in the little moments, even when things are really hard,” says her mom, Amanda Parsons.

 “I’m thankful she has not let it affect her as hard as I probably would if I were her. I’d be a mess,” Parsons says. “But she’s selfless, always thinking about others, even when she’s going through so much.”

In February 2021, Makenzie complained of back pain, and Parsons, who was pregnant at the time, wondered if her daughter was mimicking her own complaints. But the pain became so severe, Makenzie would wake in the middle of the night crying. And at one point, the severity of it caused her to fall during a gymnastics class. Parsons took her daughter to an urgent care clinic, but X-rays of her spine didn’t show a problem.

Parsons, a physical therapist assistant, then took her daughter to Julee Morrow, M.D., her longtime Cook Children’s pediatrician, who referred her to an orthopedic specialist for tests. The specialist wanted to wait six weeks before running imaging tests on Makenzie, suggesting it was probably muscular, the most common cause of children’s back pain. 

But Parsons’ gut told her otherwise. Her daughter’s pain seemed too extreme. Again, she contacted Dr. Morrow, who ordered an MRI, which Makenzie received a few weeks later.

On April 2, 2021, less than an hour after the MRI, Parsons answered a call from the pediatrician’s office. She was told to keep Makenzie’s head as still as possible and get her to Cook Children’s Medical Center right away. The MRI results revealed a mass on her C-7 vertebra, near the base of the neck, which had caused the vertebra to collapse. It was critical to keep Makenzie’s neck and back stable.

“It was like a movie moment. I just dropped everything in my hands and ran out of the store,” says Parsons, who had been shopping while her mother watched Makenzie. “I called my mom, bawling, and asked, ‘Where’s Kenzie right now?’ She told me, ‘She’s riding her bike.’ She literally had just taken her training wheels off a week before this happened. So, I start yelling, ‘Get her off! Get her off!’”

Makenzie’s grandma, Bridget Page, R.N., is director of Occupational Health Services at Cook Children’s. She wasn’t sure what was happening when she answered her daughter’s frantic call.

“I was just sitting on the driveway watching Makenzie ride her bike,” Page says. “I could tell Amanda was scared.”

And with good reason. Makenzie was admitted into the medical center within an hour of having the MRI.

“I was expecting to come in, get something like a neck brace to keep her safe, then go home and figure out the next steps,” Parsons says. “When the doctor came in, she said they were suspicious about what was going on and thought it might be something called—she said it so fluently, I’ll never forget—Langerhans Cell Histiocytosis (pronounced lang-gr-haanz sel hi-stee-ow-sai-tow-suhs). And I was like, was that English? What did she say?

“Then she said, ‘So, that means you’re going to be here for a little while,’” Parsons says.

LCH affects one in 200,000 people, mostly children, but has a high survival rate. Located in the skin, Langerhans cells fight infection in the body. But with LCH, the patients produce too many of the cells, which in turn, attack parts of their own bodies.

Makenzie, who was put in a cervical neck collar, spent that Easter in the hospital, where she underwent several tests, including a PET scan to determine if she had other tumors. Fortunately, it appeared she only had the one on her C-7 vertebra. After two attempts to biopsy it, a LCH diagnosis was confirmed, and Makenzie was moved to oncology for treatment.

She immediately started chemotherapy but didn’t respond well to the first dose, her mom says. About a month later she received a second dose, which her body seemed to handle slightly better. Two weeks later, in June, Makenzie received a third round of chemo just before getting another PET scan.

“This scan would tell us if the chemo was getting anything. It had only been two cycles, so we weren’t expecting a whole lot of difference,” Parsons says, “but it was a world of difference. The chemo had worked at shrinking her tumor. But, unfortunately, the tumor was literally holding her spine together.”

The LCH had all but disintegrated her C-7, and the shrinking tumor caused severe misalignment of her spine, putting Makenzie at risk for spinal cord trauma. Surgery to fuse her vertebrae was needed, but because of chemotherapy, her blood count levels were too low.

It was too risky. Spinal surgery would have to wait.

Halos in Motion

Makenzie—who at the time was violently ill from the third round of chemo— needed a halo ring implant immediately to keep compression off her spinal cord, Parsons says, adding, “If she’d moved a certain way, it could have been catastrophic.”

Makenzie was admitted into Cook Children’s infusion clinic where she received fluids to control the chemo side effects. The next day, on June 10, 2021, Makenzie underwent surgery for halo placement. The procedure uses two rods and four pins implanted on either side to keep the head and neck stationary and stabilize the spinal cord.

It was a difficult transition for the energetic girl who just a few months earlier had enjoyed jumping on the family’s backyard trampoline, playing soccer and learning gymnastics. But doctors, nurses, chaplains and child life specialists at Cook Children’s helped her granddaughter through some dark days, Page says.

For instance, when she heard Makenzie was anxious about the halo surgery, child life specialist Erin Loftus worked with a surgical nurse to fashion a doll wearing a halo brace to show Makenzie what would happen in surgery and how the halo would work, Page says.

“Erin sat there for about an hour showing her the doll, talking about what Makenzie was afraid of and what the surgeons were going to do,” she says. “When we walked back into her room, Makenzie was all smiles. She had perked up.”

Meanwhile, genetic testing showed Makenzie had a rare mutation of the BRAF-R506 gene, which may play a part in LCH. The family was told about a new treatment that targets that particular mutation.

“They asked if we wanted to try it. It’s an inhibitor medicine, basically like a daily chemo pill that doesn’t have the side effects that infused chemo does,” Parsons says. “We said absolutely. Anything to keep her from going through what she went through. So, she has been taking that pill every morning since last July and seems to be responding to it.”

Before she could have spinal surgery, though, the chemo effects needed to be monitored in her body, as well as the new medication’s potential effects. Surgery was set for September 2021, but with another surge of COVID hitting the area, it was postponed. At the end of October 2021, surgeons were able to fuse Makenzie’s C-5 through T-2 vertebrae to stabilize her spine.

As she healed, Makenzie continued to wear the halo until the end of December. Despite some difficult days, she made it through almost seven months of wearing the device, something typically worn no more than 12 weeks, her mom says.

That doesn’t surprise Makenzie’s grandma, though. Makenzie will not be defined by her medical condition, she says.

“She has taught me that even on your darkest day, you can find some glimmer of happiness. Even if you’re facing trials in life, you can find happiness and not dwell on what’s going on with you,” Page says. “You accept it and keep moving. And that’s what she does. She might have a little pity party for a day or two, and then she’s like, ‘Oh, well,’ and she just keeps going.”

Two Feet on the Ground

With targeted therapy, Makenzie’s long-term prognosis is excellent, says Anish Ray, M.D., her pediatric oncologist at Cook Children’s.

“She has been able to be playful and active, free of chemotherapy-related severe toxicities,” Dr. Ray says.

Makenzie will continue to be monitored for LCH, says Parsons, who joined an LCH community on Facebook to keep up with treatments and research. In April, she also rallied friends and family to raise $10,615 for The Blast, a Cook Children's event that supports research, clinical trials and treatments for patients and families at Cook Children’s Hematology and Oncology Center. Mighty Makenzie’s team also was recognized as the highest new fundraising team by The Blast.

 “We’ll always be on the lookout for it,” Parsons says, adding Makenzie has an upcoming PET scan in August. “I don’t think they’ve had anyone on this medicine long-term, yet, so we’ll find out if it’s something she can be on for a long time or if we have to figure something else out.”

Free of halo traction and of chemo side effects, Makenzie is back on the move, restricted only by “two-feet-on-the-ground” protocol. She hopes to go back to in-person school as a second-grader in the fall, her mom says.

Makenzie enjoys playing with her best friend, Bradley. She draws and paints. And she loves math, especially learning about money, she says with a quick grin.

She also is learning to play the acoustic guitar, electric guitar and keyboard. Her favorite band to listen to? “Queen,” Makenzie says without hesitation, “because they’re funny.”

Ashraf Mohamed, M.D., the first pediatric oncologist at Cook Children’s who saw Makenzie, continues to check on her as she navigates LCH and the complications around it.

Her toughness and willingness to fight the disease is inspiring, Dr. Mohamed says. In almost 30 years of practice, he has seen only a handful of LCH cases in which the spine was affected.

“The decision to put her in a halo, which is a really major thing for a child like her, I couldn’t imagine how she would tolerate that,” he says. “Being in this big halo, which is really heavy, and still being able to play and do stuff, that was really amazing.”

“The key thing that sticks in my mind when I think about Makenzie is her being so smart. She knows what’s going on. She knows how to ask questions and advocate for herself. That’s really amazing for 7 years old,” Dr. Mohamed says. “Each time I see her and see the big smile on her face, I tell her, ‘You make my day.’ She basically makes the people around her happy.”

Fifteen years ago, two young friends made a promise. As 4-year-old Michael Mancuso battled neuroblastoma, a rare type of cancer that occurs in infants and young children, his friend Alexa Sankary supported and encouraged him. Just before he passed away in September 2007, Alexa promised she would help find a cure for other children still suffering from this terrible disease.

Alexa kept her promise by starting The Blast, a walk to find a cure for neuroblastoma. In the 15 years since that promise, The Blast has grown to support children battling all forms of cancer at the Cook Children’s Hematology and Oncology Center.

During the time Michael spent at Cook Children’s, another patient battled neuroblastoma alongside him. Elesha Debenport was diagnosed a month before her third birthday. 

Elesha lost her battle with cancer on June 22, 2007, just three months before her friend Michael passed away. She was 5 years old. When The Blast was held for the first time just a few months later, Elesha's mother, Karen Debenport, and her family were there to help find a cure for other families fighting neuroblastoma. Every year since Karen has been involved in The Blast as a committee member.

“Elesha would have been 20 on Feb. 6, 2022, if she had survived. This memorial of her life, her birthday, has helped me galvanize why I remain involved in The Blast,” Karen said. “I want to be a voice for families affected by childhood cancer. This event uncovers the very obscure lives of children with cancer and their families, and it’s an opportunity to stand with them in their suffering, sorrow, loss and in the overcoming.”

Michael and Elesha met on the hematology and oncology floor, and would often send things back and forth to each other to show love. Karen remembers her daughter as a vibrant little girl who showed love to everyone she met.

“She loved to read, talk and have conversations,” Karen said. “The nurses were in awe of her verbal skills. Elesha was a very sweet child, and she loved her family. She was always thinking about what she could make for her siblings, and what she wanted to share with them.”

Meaghan Granger, M.D., a pediatric hematologist/oncologist, walked in the first year of The Blast, too. Dr. Granger leads the neuroblastoma team at Cook Children’s and personally treated both Michael and Elesha.

“It is a privilege to have known Michael and Elesha and cared for them and their families,” Dr. Granger said. “When they were diagnosed with neuroblastoma, those kids fought extremely hard against a terrible disease. Families with neuroblastoma spend a lot of time at the hospital and get to know other patients. Around the time that Michael and Elesha were in treatment, we had several other neuroblastoma patients who bonded together and formed a small ‘army’ to fight together. They were such an inspiration.”

In the U.S., more children are lost to cancer than any other disease. In fact, about one in 264 children will have cancer before the age of 20.

“When you’re looking from the outside, you think ‘oh, that’s awful,’ and then move on,” Karen said. “On the back of the tribute signs [at The Blast], there are phrases like ‘It could be your child,’ or ‘It could be your friend’s child.’ I hope that The Blast is an opportunity to face the truth that children get cancer.”

When a child is battling cancer, their family suffers as well. Parents often must spend days and weeks away from work and other children as they support their child through inpatient stays. Siblings face long-term emotional struggles as they learn to cope with feelings of loss and loneliness.

“My participation in The Blast announces to these children that they are not alone, and shows their siblings that our community cares about them,” Karen said. “I want them to have a future free from the harming effects of chemotherapy and the emotionally devastating effects of family separation that occur during treatment.”

Thanks to improved treatments, more children survive pediatric cancer than ever before. Many survivors will, however, face significant health-related issues later in life, caused by side effects of either cancer or, more commonly, the result of its treatment.

“Thanks to Michael and Elesha’s fight and the ongoing support of their families, we have seen miracles happen for those who are being treated today,” Dr. Granger said. “Not all of our patients are cured, and so we continue to fight and pursue new therapies and strategies on how to combat this disease until we see a cure for each and every child.”

The Blast 2022

The 15^th annual The Blast will take place on April 2, 2022 at Panther Island Pavilion in Fort Worth. Every dollar raised will bring more research, clinical trials and treatments closer to home for patients and families at the Cook Children’s Hematology and Oncology Center.

Families and friends of kids like Elesha and Michael walk every year to find a cure. You don’t have to know someone who has been affected by childhood cancer to get involved; The Blast is a way to stand with these families in their grief, and hope for a brighter future. You can support patients through every stage of their journey by signing up to walk, asking for donations and sharing their stories.

“This is our community. These are our children, and we need to provide treatments for them that aren’t as harsh,” Karen said. “The Blast is an opportunity to come together as a community and remember, celebrate and look forward to better, less toxic treatments. It’s an opportunity to hope for better days to come.”

Visit blastwalk.org to sign up for The Blast 2022 today.

The latest set of eyes to see it? Ellen DeGeneres! The uber-famous comedian and talk show host interviewed the Yielding family about their journey with “keulemia” and surprised them with a special gift during the holiday season.

You can view their interview here.

Olivia is 7 years old and has fought a battle that most 7 year olds (and 70 year olds) have never and will never face.

Olivia has spent the last two years in and out of Cook Children’s battling neuroblastoma. It was a cancer that started in her adrenal gland and had spread by the time it was found – around her spine, and all over her stomach.

She is a tough cookie. Olivia has undergone countless procedures, tests and chemotherapy. And in 2017, Olivia underwent something called an autologous stem cell transplant.

This means that before chemo, her own stem cells (which you can think of as neutral “beginner” cells) were taken from her bone marrow, harvested, and after the chemo wiped everything out, put back into her bone marrow as a “fresh start” for her immune system! It was a huge part of her cancer treatment.

This also means that all of the “memory cells” she used to have are gone.

And it means that the vaccines she got as an infant and small child are “forgotten”.

So Olivia now has no protection against vaccine-preventable illness. Her immune system is like a baby’s again.

When she came to see me for her checkup last week, I hadn’t seen her in two years! She was bouncing all over the room, and smiling, and happy. Like 7 year olds should be! She’s doing great! Her oncologist is watching her very closely, but her cancer seems to be gone!

I know that’s a lot of exclamation marks, but all deserved for this awesome little girl.

We now have to start re-vaccinating Olivia. This is a slow process that will take a few years. Until she is fully vaccinated, she is susceptible to illnesses like whooping cough, pneumonia, measles and others.

I’m telling you Olivia’s story (at the urging of her father, who wants you to know her story) so that you understand why everyone should be immunized.

Olivia CAN’T be immunized fully yet. Her body needs time to re-learn all of her vaccine protection.

If all of us AROUND Olivia get vaccinated, we are creating an impenetrable wall of protection. The disease cannot get into our community to potentially attack Olivia’s brand new immune system.

When you make a choice to vaccinate yourself and your child, you also prevent something devastating to those who cannot protect themselves – like Olivia.

And she’s fought too hard a battle to look back now!

Learn more by clicking the links below:

• Vaccines and Immunizations
• Immune Suppressed Children and the Measles: What Parents Need To Know
• From Vaccine Hesitant to Pro Vaccines. Why This Mom Changed Her Mind.
• Measles In the Classroom
• Pediatricians Remember Experiences with Measles
• 'Vaccines Are Safe and Effective'
• Cook Children's Hematology and Oncology
• Bone Marrow and Stem Cell Transplant
• Neuroblastoma

But when they realized she wasn't using her left arm, they became alarmed.

Autumn admits it took a little bit to be concerned because the last thing on her mind was that her young daughter could have a stroke.

"I didn't even know kids could have one," Autumn said.

Kynlee was born on March 5, 2015, in Oklahoma. Autumn and Darrell hoped for a healthy child, after watching their oldest daughter, Addison, now 9 years old, battle cancer throughout her young life.

But from the beginning, Kynlee faced health problems. She was born with bladder dysfunction and was cared for by Blake Palmer, M.D., a pediatric urology specialist and surgeon. 

"Our older child faced so many medical problems and we kind of became used to having something wrong with our child," Autumn said. "But to have another child with medical issues was very emotional."

Even with everything they had gone through at this point, nothing prepared Autumn and Darrell for what occurred on May 2017 in their little town of Coyle, Okla.

When things didn't change with Kynlee's left arm, they went to their local ER where Kynlee was initially diagnosed with a stroke. She was transferred to a larger hospital in Oklahoma, and after a lengthy hospitalization, the family returned home with limited information about Kynlee's condition.

Once again Kynlee started having similar stroke symptoms in July 2017, but these were thought to be seizures. At first doctors placed Kynlee on seizure medication, but that didn't work because that wasn't effective against the little girl's mini strokes.

At the same time this was going on, doctors found Kynlee needed heart surgery to repair a hole they found in her heart. Kynlee had been scheduled for cardiac surgical repair at another hospital in July 2017, but it was canceled due to high risk and complexity of her medical condition.

Autumn and Darrell were at a loss by the end of the year and struggling to find some hope for their daughter's condition. They found it in an old friend. Dr. Palmer had moved to Cook Children's and was still seeing Kynlee for her urological condition. He suggested Kynlee be seen by Cook Children's Comprehensive Stroke and Thrombosis Program.

Lori Buechler, a nurse in Urology who works with Dr. Palmer, coordinated the family's care with Jo Tilley, the stroke and thrombosis PNP, to transfer records, imaging studies and complications involved with dealing with multiple specialties.

"Dr. Palmer and his nurse Lori have always been there for us," Autumn said. "I'm not sure we could survive without their help."

The Thomas family arrived at Cook Children's Stroke Comprehensive Clinic in January 2018. "We saw the stroke team," she said. "And I mean it was a team. We saw everyone you could think of. We stayed three days at Cook Children's and we found everything in three days that we had waited months to find out. We had a diagnosis. They performed four or five tests that no one had ever performed on her in Oklahoma and she was seen by every specialist you can imagine in that time

"When she got here, Kynlee's condition was severe and significant, which placed her at imminent risk for further harm due to stroke or cardiac arrest," said Fernando Acosta, M.D., a neurologist and associate medical director of Stroke and Thrombosis Program at Cook Children's. "We felt it was in Kynlee's best interest to be admitted as quickly as possible for further investigation." Marcela Torres, M.D., a hematologist and director of the Stroke and Thrombosis Program at Cook Children's, agreed with Dr. Acosta. Kynlee was in a precarious state because, despite her preventive antiplatelet therapy, her congenital heart disease would likely also affect her brain perfusion. So, after her admission, several sub-specialists were quickly consulted, including Cardiac ICU, Cardiology, CV surgery team and Sami Hadeed, M.D., a pediatric pulmonologist.

During her initial admission, Kynlee was placed on the Epilepsy Monitoring Unit without any antiepileptic medication. The EEG showed no signs of epilepsy and she was taken off of her medication. Imaging indicated Kynlee did have a new stroke to her right front lobe. This explained Kynlee's earlier episodes where she lost movement on her left side.

Prior to genetic testing, Kynlee was initially diagnosed with a cerebral vasculopathy, similar to Moya Moya syndrome, a rare disease that affects arteries in the brain.

"Kynlee's treatment plan is an example of the complexity of a pediatric stroke patient," Dr. Torres said. "Because of our stroke program and our involvement with the International Pediatric Stroke Society and pediatric research studies, we are able to provide patients with the highest level of pediatric stroke care."

Then there was that matter with Kynlee's heart. Cardiology completed an echocardiogram and formal evaluation. Vinod Sebastian, M.D., a pediatric heart surgeon at Cook Children's, performed the surgery on Kynlee in late January to complete closure of her aortopulmonary window.

"It was definitely a relief and comfort just because we had people on our side who knew what was going on and wanted to help us," Autumn said. "But also because it was all happening so fast, it was just kind of ... 'WHOA!'"

Along with everything else going on with their two daughters, major changes were occurring in the Thomas household. Autumn delivered her third child, a boy named Parker, in January 2018. Parker was staying at the Ronald McDonald House near the medical center with Darrell, who had recently been laid off from work.

The family was discharged in early February and Kynlee and her parents returned to Oklahoma. Everything was fine Friday and Saturday, but on Sunday Kynlee lost the feeling in her left side again. She was taken to an emergency room in Oklahoma where scans verified another stroke. She was transported by helicopter on that Monday back to Cook Children's. Once at the medical center, she lost movement on her right side as well.

Kynlee remained in the pediatric intensive care unit for a week. Doctors found she wasn't getting enough blood flow to her brain due to her progressive cerebral vascular disease. Pediatric specialists from Neurology, Hematology and Cardiology monitored Kynlee as they balanced her medications to treat her blood pressure and decrease her chance of another stroke.

Over the next week, doctors eventually found the right mix of medications to increase her blood pressure enough to improve the perfusion of her brain. She was monitored closely.

Kynlee also showed improvement in functionality. At the time of discharge she was able to crawl and was recommended for an orthotics consult, as well as outpatient physical and occupational therapy.

Since her discharge, Kynlee's genetic testing that had been ordered at Cook Children's, came back. She was diagnosed with an ACTA2 gene mutation, which causes people to be predisposed to vascular disease including strokes, coronary artery disease and aneurysm.  Autumn says the entire family plans to go through genetic testing for the gene as well.

Things are looking up for the Thomas family. Darrell has a new job. Their older daughter is doing well and Parker shows no sign of any health problems. Kynlee is back home in Oklahoma and doing well thanks to the medications doctors at Cook Children's diagnosed specifically for her condition.

"Kynlee is starting to walk again," Autumn said. "She hasn't been able to walk since her stroke in February. She's doing great. I'm watching her trying to feed her baby brother a Barbie doll bottle."

Autumn laughs. She welcomes this very typical, very silly problem.

They have come such a long way just to feel their own sense of normal.

Stroke and cerebrovascular diseases are within the top 10 causes of death among children and up to 70 percent of stroke survivors have residual neurological impairment.

Because the causes and symptoms are so different, treating stroke in children requires specialized training. Cook Children's Comprehensive Stroke and Thrombosis Program is one of 16 such centers in the U.S. As members of the International Pediatric Stroke Society, the Cook Children's team works with a network of other pediatric hospitals to improve stroke care worldwide.

The program is led by Medical Director Marcela Torres, M.D., a hematologist/oncologist and Co-Director, Fernando Acosta, M.D., a neurologist.

The team is committed to the early recognition, treatment and prevention of pediatric stroke through research, innovation and education.

The program allows patients to be seen by multiple specialists at once, instead of scheduling numerous visits. Patients can see pediatric sub-specialists from:

• Hematology
• Neurology
• Neurosurgery
• Neurodiagnostics
• Neuropsychology
• Interventional Radiology
• Social Worker and Child Life

The Hematology/Oncology (H/O) floor at Cook Children’s is its own world. Bright green walls lead the way among the hustle and bustle of the daily routines of patients, families and doctors. But behind the miracles happening on the Hematology/Oncology floor is the dedication of pediatric nurses like Paige Cravens.

Though she has only been with Cook Children’s for two years, Cravens has quickly become a valued nurse on the H/O floor because of her genuine passion for children.

“Paige has one of the most caring and compassionate personalities on our floor,” Cook Children’s Hematology/Oncology Nurse Manager Jessica Williams Henry, RN said. “Whenever you meet her you can feel that her energy is positive and you feel safe with her.”

Although the stress and nature of a Hematology/Oncology nurse is demanding, Paige is known as a light to other nurses and patients on the floor.

“She’s really become a leader,” Williams Henry said. “It’s shifted our culture on the H/O floor because if it’s a bad day and Paige shows up, it’s instantly better because if she can see the positive in something then everyone else is going to try to see it too.”

The diagnoses on the H/O floor are serious and often require immediate treatment, but Paige is with her patients from beginning to end, offering support, encouragement and treating her patients as if they are her own family.

“I think my favorite thing to witness is the journey from diagnosis to completion of therapy,” Cravens, a registered nurse (RN), said. “When you admit a newly diagnosed child, the emotions in the room are heavy, as you can imagine. Through the tears and hard conversations, I always try to squeeze in some words similar to ‘I am not saying this will be easy, but I mean it when I say this place will become home and these people will become like family,’ and most often that is exactly what happens.”

Not only does Cravens understand the practices and general knowledge of nursing, she is able to recognize minor changes and is known to always push for more to ensure the best care for her patients.

“Paige is really proactive and a huge advocate for her patients,” Cook Children’s Nurse Manager Jordan Richter, RN, said. “She’s very in tune to her assessment skills and doing everything for the patient to keep them safe. Paige is just one of those nurses that you wish you could clone.”

Some may believe it is best to detach from emotions when working in a children’s hospital, however Cravens is known as a genuine nurse who will shed tears with heartbroken families, but also celebrate in the accomplishments of her patients.

“Paige will cry with a family, she’ll laugh with a family, she gets down at that level,” Richter said. “She’s raw with her emotions and families can tell she cares. She’s the definition of what anyone would want for a H/O nurse.”

The mere thought of an extended stay in a hospital is typically something most children would want to avoid, but the magic that happens at Cook Children’s is enough to change the stigma of a place where healing can happen.

“The kids are so resilient, it amazes me. They have to trade out going to school with hospital admissions, friends for nurses and doctors, but more often than not they come walking through the door with a big smile on their face,” Cravens said. “They face things that no person, no child, should ever have to go through, yet they still have joy. They have this will to fight, and they never give up. They find a way to overcome.”

Although miracles do happen, pain and loss also reside on the Hematology-Oncology floor.

“The difficult situations seem endless at times. Our patients and families experience so much loss in all senses of the word, from the loss of all normalcy, togetherness as a family, financial security, loss of hair to sometimes loss of life itself,” Cravens said. “Watching it all unfold rips your heart out. But hope never runs out and I think that is what sustains each of us. We watch whole towns come together in support, kids pushing past the impossible, fears conquered, faith restored and prayers lifted. There is beauty in that.”

For Cravens, a nursing career at Cook Children’s is more than just a job, it’s a family and a place where magic and miracles are real.

“We had a little girl who pretended to be Elsa, wig and all, who would call Cook Children’s her castle,” Cravens said. “She loved being at her castle, and when it came time for her last chemo, we all celebrated with posters and balloons. When she caught on that it was her last time coming in to stay at the castle, she kicked and screamed the whole way out. That really says something about this place.”

The role of a pediatric hematologist and oncologist stretches far beyond the walls of Cook Children’s medical center because the physician participates in clinical trials and collaborates with other experts both nationally and internationally.

Meaghan Granger, M.D., medical director of the Neuroblastoma program at Cook Children’s, is involved in unique and innovative patient care as well as important research that could have a long-lasting impact on the treatment of pediatric patients in the near future.

She is involved in multiple trials at Cook Children’s and is an active member in research with the Children’s Oncology Group (COG) and New Approaches to Neuroblastoma Therapy (NANT). Dr. Granger is the lead COG primary investigator for Cook Children’s and her work has made Cook Children’s the highest enrolling NANT institution in the nation.

That collaboration is so important in cancer research because it means more patients participating and more data to review in the search for a cure.

“Pediatric cancer is unique,” Dr. Granger said. “We can't just take adult studies and apply it to these kids. It's not one size fits all. When you look at survival rates, things were very dismal in the 1980s. With each decade since you have seen the survivor curve go up. That's because of the clinical trials and supportive care that pediatric patients receive now."

The group approach among pediatric hematologists and oncologists also creates a virtual think tank. It allows physicians like Dr. Granger to bounce ideas off of one another and share best practices with one another.

"It is a very great thing for all of us. The virtual group of neuroblastoma doctors I'm in, we can call each other. People call me and ask what I think and I can call them," Dr. Granger said. "That happens on maybe a daily basis. The amount of discussions we have with just four or five of my peers and to look at the treatment and research ... it would take a patient 6 months to see that many doctors and get that many opinions. It's so valuable. We can get a lot done in a short period of time. It's invaluable to get other expert opinions on things. In our field, we see things happen all the time that we don't expect."

Dr. Granger credits her “incredible research staff” for making the program successful. Their depth of experience helps them identify the right patients for specific trials and stay in contact with the families to gather and document data. She also praises the patients and their families for participating in the trials. That research may help kids in the future, but that's not the immediate goal. The objective is to find the best course of treatment and care to help the child participating in the trial as quickly as possible.

"I have a high level of confidence that these studies make a difference," Dr. Granger said. "I think that's a big part of why families want to bring their children to Cook Children's because we have so much to offer them when they come here. We generally have several options of treatment to offer them. We help people by giving them hope. Everyone involved in the NBL program has a deep calling and a passion to truly help people.”

Sickle Cell Disease is a blood disorder where the red blood cells (which typically carry oxygen through the body) are misshapen and don’t move well through the smallest blood vessels. One of the worst parts about the disease is the occurrence of sickle cell pain crises, which can lead to severe pain in the back, arms, legs or chest. These episodes can last hours to days and often result in severe pain which can require time spent in the hospital.

“This new drug may help to decrease the frequency with which people have pain crises,” said Clarissa Johnson, M.D., medical director of the Sickle Cell Program at Cook Children’s. “I’ve been telling families about the trial results. But I have also told them that it will most likely be a while before a drug trial is completed involving a larger number of patients to gain FDA approval. I’m very hopeful that trial of this drug will be successful. It is not a cure but could potentially make it easier to live with this disease, since the currently available cure of bone marrow transplant is not an option for everyone, due to a lack of available donors.”

The drug in the trial acts as an antibody to the surface of blood vessel wall and platelets that stick together, which is part of how the pain crisis happens.

Kenneth I. Ataga, M.D., professor of medicine and director of the comprehensive sickle cell program at University of North Carolina at Chapel Hill, and his colleagues, evaluated the safety of crizanlizumab. Dr. Ataga said he believes the use of crizanlizumab for people with Sickle Cell Disease “will make a significant difference in patients’ lives.”

Additional studies are needed to assess the agent in younger children with sickle cell disease.

“Children younger than 16 years of age also have painful crises but the pathophysiology is the same, so there is no reason in my mind to think it would not work,” Ataga told HemOnc Today.

Highlights of the study include:

• Almost 200 patients with a history of two to 10 Sickle Cell related pain crises in the last 12 months.

• Patients receiving high-dose crizanlizumab had 1.63 pain crises compared to 2.98 in those that did not.

• Crizanlizumab was well-tolerated, with a low rate of side effects, particularly acute chest syndrome incidence.

• Five deaths occurred during the study period but these weren’t considered related with the treatment.

Get To Know Clarissa Johnson, M.D.

At the core of Dr. Johnson's passion for medicine and pediatrics is her desire to be an advocate for those who don't have a voice for themselves. Her initial interest was to be a research scientist, but realized face-to-face interaction with patients and their families might make a greater difference in people's lives.

This personal commitment is made every day at Cook Children', but has also led Dr. Johnson to medical mission trips to hospitals and clinics in Nigeria, Ethiopia and Eritrea. Click to learn more about Dr. Johnson.

See the full story and video here.

When you think of a Cook Children’s patient, it’s just natural to think of a tiny baby girl who’s only lived in our NICU or a first grader in the Child Life Zone playing with Ralph just like his own dog at home. It’s especially true that Cook Children’s strives to make our patients’ stay as close to “normal life” as possible.

That balance between normalcy and medical treatment is achieved because employees are quick to squat down to their level to talk with words that make sense or to play a game and make them smile.

But finding that right balance is much different when that patient is a young man or woman dealing with a cancer diagnosis. Their lives become a new balancing act of making adult decisions, whether medically, professionally or personally. The AYA Program at Cook Children's helps teens diagnosed with cancer and their very unique needs.

The National Cancer Institute defines Adolescent and Young Adult Cancer as cancers occurring between the ages of 15 and 39, with an estimated 70,000 diagnosed each year. Even within that broad range of ages, their needs and expectations from caregivers may vary but one thing is constant: a desire to be treated like an adult.

Corey Heath, psychologist for the AYA Program at Cook Children's, says, “We recognize that AYAs are not just ‘big kids’ or ‘little adults.’ We assure them that their voice and experience is important and help them understand that they are not defined by their diagnosis.”

And when it comes to that diagnosis, this AYA team adjusts their approach to reach them. Allie Barnes, RN, explains, “It’s not always easy to switch back and forth between a 2-year-old and a 17-year-old within your same patient assignment, but our nurses do it effortlessly. By being upfront, respectful and honest about everything and using proper verbiage, they are quicker to adapt and warm up to their treatment on our floor.”

Karen Albritton, M.D., Medical Director of the AYA Program, adds, “Young adults with cancer are quite busy trying to both deal with their health issues and trying to hang on to what’s left of their normal life. And it can be hard to convince them that spending time with other young adults with cancer or tending to their emotional health (via work with an AYA psychologist or other practices like journaling, creative arts, exercise, meditation) will be worth it.”

But such challenges to reach through to them can be the most satisfying part, according to Child Life Specialist Laura Sonefeld. She explains, “Those moments when these AYA patients let me get to know them just a little bit at a time, they open up about their experience, they tell me about their home life, are those moments that I treasure. I am honored to be that kind of a support for these patients, who simply want to be home or at school with their friends, like any teenager.”

Dr. Albritton sums up what she views as the goal for all of Cook Children’s for these AYA patients, “I am deeply grateful for the strong core group of individuals on our team who are passionate about helping young adults, and about educating other providers to tweak their practices in ways that will enhance their care of this population. I really see our goal to make all providers at Cook Children’s members of ‘the team’ so that anywhere an AYA is in the hospital, they feel our providers give them age-appropriate care.”

About Cook Children's Adolescent and Young Adult Program

Navigating the teen and early adult years and finding the place where you fit in can be pretty challenging. Add cancer to the mix and suddenly the road feels lonely and long. Our AYA patients face these obstacles every day, and we are constantly in awe of the amazing dignity, grace and humor they bring to their journey – much of which is spent right here at Cook Children's Medical Center. Click to read more.

We give vitamin K supplementation as an injection in babies following birth to prevent a condition called Hemorrhagic Disease of the Newborn. This devastating condition was, prior to the institution of the supplementation, a significant contributor to infant death, which ravaged society in the pre-twentieth century period. Vitamin K is necessary to make the clotting system in humans work properly. It basically allows clotting factors to be turned on so they can work correctly. As children and adults, we get most of our vitamin K from our diet (eat your green vegetables!) and surprisingly from bacteria, which normally live in your intestines. These bacteria process the components of food which we don’t, and produce the vitamin as benefit to us.

This vitamin dissolves in fat so adults generally store it well. Infants however do not have a good storage or supply of the vitamin. The placenta does not transmit it to the infant well and breast milk has very little vitamin K in it. Newborns also have no bacteria in their intestines to produce the vitamin; so, the end result is, without good storage of this vitamin, infants are at risk for severe bleeding problems. While this can present in the first week of life as bruising and bleeding from the umbilical cord stump, the most devastating effect is bleeding inside the brain which can occur up to 12 weeks after delivery.

Most of this bleeding risk can be avoided with an injection into the muscle of vitamin K at the time of birth. This provides a source of this valuable vitamin to tide the baby over until intestinal bacteria build up enough to produce the vitamin for the baby. As far as dietary sources, breast milk does not encourage the bacteria which produce this vitamin to grow well. Formula is supplemented with vitamin K, but importantly the different sugars in the formula do encourage the bacteria to develop, but it takes time.

Parents often hear stories about the vitamin K injections causing side effects, particularly a risk for cancer later in life (this was related to an old version which had a chemical called phenol in the formulation and never proven even when it was in there), worsening jaundice (again an old formulation used in the mid -twentieth century) and possible liver damage (which can happen from a large overdose, but highly unlikely with the standard amount given to infants).

Some have proposed alternatives methods as the safest and most effective means to administer vitamin K, generally giving the vitamin by mouth to the baby. The big problem with this strategy is absorption of the vitamin is not guaranteed in infants so we have to give a large dose for a long time to do this. With high doses over a long time you do run the risk of getting too much vitamin K and causing liver problems. There are no commercial liquid forms of this drug, so often the injection solution is just fed to the infant. Over the counter vitamins K pills are not well absorbed at all and there is no certainty in these preparations how much vitamin K the infant will get. In a misguided effort to protect their baby from harm, parents end up exposing them to much more risk.

The American Academy of Pediatrics does not recommend oral supplementation, because it has significant risks compared to the simple vitamin K injection, which has proven both safe and very effective to prevent this condition for decades.

About the author

Donald Beam, M.D., is a hematologist and the medical director for the Life After Cancer Program at Cook Children's. Learn more about the Hematology and Oncology Progam at Cook Children's today.

Here are three articles about the kids who fight cancer and the work Cook Children's does to hopefully someday #erasekidcancer for future generations:

When it comes to battling cancer: she rocks!

Tori Pence has loved music since she was 7 years old when her grandfather gifted her with her first guitar. But it wasn’t until she was admitted to Cook Children’s that her passion for music flourished. Click to read her story.

Luke's story

On Tuesday, Sept. 1, Cook Children's began this year's #erasekidcancer campaign for Children's Awareness Month with a ceremonial 1k walk. Fifth grader Luke Lange, who’s in remission for Hodgkin’s Lymphoma, stepped up to the podium and lowered the microphone to fit his 10-year-old height to share what Cook Children’s means to him. We found it so inspiring, we thought everyone should hear his story.Click to read Luke's words. 

Our efforts to #erasekidcancer

The Cook Children's Hematology and Oncology Center works every day on medical treatments and research to help make the blood disorders and cancers that affect children and teens, disappear. Here are some of our efforts to #erasekidcancer: Click to watch great videos about our MIBG program, Bone Marrow and Stem Cell Transplant Program and Complex Blood Disorders and Diseases program.

More about Hematology and Oncology

As a specialty, hematology and oncology was formed because there are so many instances where blood diseases and cancer cross paths. Just like adults, children get cancer, but the cancers children have are very different in many ways than adult cancers. Because of the unique nature of children with cancer, they must be evaluated and treated by pediatric specialists. Our top priority is providing the best care for your child.

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.

Hello everyone. My name is Luke Lange. What a beautiful day for a walk to help erase cancer. I am very honored to be with you today and to have the opportunity to tell you my story.

I like to think of myself as a pretty normal kid. I enjoy football, basketball and golf. I like to hang out with my friends and of course obeying my parents. When I was in third grade, something happened that changed my normal years into my most challenging.

My grandparents came into town for a Veteran's Day celebration at our school. My grandmother noticed my neck was swollen on one side. She is always giving my sister and me the "grandmother inspection" so I didn't think much of it. I didn't feel sick so I didn't think anything was wrong.

After a few months of antibitiocs, blood tests, scans and even a biopsy all of which came back fine, my doctor decided to remove the swollen lymph nodes so everyone would stop worrying. In fact he said, "Let's get this done so you guys can go and enjoy spring break."

Once the lymph nodes were removed, the results showed I had Hodgkin's lymphoma or in simple terms: cancer. Spring Break was replaced with surgery to put in a port and I started my first round of chemo. My third grade year was over. My family and I were now focused on getting me healthy.

Before this, I had never stayed in the hospital overnight. Now I would check in for days with a machine hooked up to me constantly to give me medicine. Sometimes when I would like getting out of the bed, I would walk the halls of the cancer floor. As I walked the halls with my family and friends I noticed that some kids just like me and sometimes younger didn't have family with them during treatment. Sometimes those kids would only have a nurse or a child life specilaist with them during chemo. I can't imagine how they felt.

Everyone I met and dealt with at Cook Children's made dealing with cancer the best that it can be. Yes, I had to do the treatment, get sick, follow the rules and when my counts get low, I was the one that had to go into isolation, but the team here at Cook Children's was with me every step of the way. I always felt safe because my parents and so many people were there to support me.

Having cancer is scary for everyone. My family and friends and the team here at Cook Children's prayed and supported me and our family. It takes so many people to fight this disease.

My parents tell me that having cancer was a chapter in my life. It will and has changed my life forever. One good thing that came from this experience is that I designed a shirt to help me and other cancer patients not feel so sick while they are doing treatment. I was given the opportunity to partner with Mark Cuban. How cool is that? But one of the most important things I learned is that we all have to help each other. Especially, those who need our help.

Today is the kick off to Childhood Cancer Awareness Month. Just by you being here, you've made a commitment to help kids like me. Thank you! In a few minutes, we will begin the walk. We are walking for the kids and their families on the floor who would love to join us, but can't. We are walking because we know that everyone can help make a difference.

You have inspired our family to give back. Our family can do many things, but we do not have the knowledge and the expertise that each of you have to help "Erase Cancer." Our position on the team is to drive awareness and help raise much needed funds so you guys can stay focused on the task at hand.

To kick off the month and this walk, we would like to donate $5,000 to help ERASE CANCER!

MIBG

Depend on Cook Children's for treatment few others can offer – like an innovative way to deliver targeted therapy to kids with cancer. MIBG therapy is part of a clinical research trial that delivers targeted radiation directly to cancer cells. MIBG is more than a medicine. This therapy gives hope to children with neuroblastoma. Children receiving this therapy stay in a lead-lined suite connected to a family room, designed to minimize radiation exposure to the family and staff caring for that child. Cook Children's created the first MIBG facility in the Southwest to help bring care closer to home for patient families.

Bone Marrow and Stem Cell Transplant Program

When things get complicated, families depend on Cook Children's. Since 1986, our Bone Marrow and Stem Cell Transplant Program has performed more than 700 transplants in children with cancer, blood disorders or inherited diseases. That's what makes this program one of the most diverse and experienced pediatric transplant programs in the Southwest. Cook Children's provides life-saving stem cell transplants for a variety of diseases in patients. Outcomes are improved through our multi-disciplinary team approach and continuous quality improvement.

Complex blood disorders and diseases

From routine checkups to innovative blood disorder treatments, everything we do is designed to make kids and their parents feel better. At Cook Children's, we treat children from infancy through young adulthood with a broad range of complex blood disorders and diseases. We understand the many types of blood disorders and diseases that affect kids, as well as the unique requirements for treating conditions in continuously developing bodies. We treat hematology conditions including von Willebrand disease, sickle cell, hemophilia, stroke and thrombosis, bone marrow failure syndrome, anemia, neutropenia and thrombocytopenia.

Today, we give you a look into the lives of Galen and Taylor. Both are connected as not only TCU sorority sisters, but cancer patients and members of the Adolescents and Young Adults (AYA)  program at Cook Children's. 

Galen Storey is a 21-year old student at TCU. She was diagnosed with cancer in December 2014. She has allowed us to use one of her blogs to give an inside look at her fight against cancer and then Taylor, who is 18 and also at TCU, gives us insight into what the AYA Program has done for her with a video blog.

Each year about 70,000 Americans between the ages of 15 and 39 learn they have cancer. Here are two young people who have allowed us to share their stories.

Fighting cancer with Grace

The day I went in for my first chemo treatment at Cook Children’s, the doctor had a meeting with me to prepare me as best as he could. For my cancer there is a certain protocol/regimen that consists of treatment different chemo meds, 42 treatments of weekly chemo, and radiation for about 6 weeks (starting at week 15).

Holy crap.

The doctors can go over every side effect in the book and then some but there are some things they can't prepare you for. My friend Grace said it best when she said, "There is no guidebook to cancer" and it's so true. Shout out to Grace for being my built-in therapist. One day people will have to pay her to tell them how they feel and I won't.

I've thought about this post for a while and about certain things that have happened that I wasn't fully prepared for. I've decided I could make a booklet filled with these things but instead I have narrowed it down to a few I will share with y'all:

If they could also give you a step by step plan on how to tell someone you have cancer that would've been sooo Gucci because let me tell you, it is awkward. Grace and I kinda laugh about it now because she's had to break the news to more people than I have.

There's no easy way to do it. It's a bomb, a word bomb and you kinda just have to say it, "I have cancer" and the people we're talking to more times than not gets an awkwardly sympathetic, but at the same time terrified look on their face. But I have to remind myself I wouldn't know what to do if someone dropped that bomb on me.

He told me I would lose my hair. I knew I would lose my hair, but I still wasn't prepared for how it felt when I pulled a chunk of my own hair out of my head. Buzzing it off still feels like a surreal experience and sometimes I have to remind myself that I'm bald. (That's for a whole other blog post though.) They also don't tell you that you will lose your nose hairs … like what? ... But y'all nose hairs are important. I miss them. Not having nose hairs means your sinuses get super dry and irritated and you get the most annoying headaches. Be thankful for your nose hairs people!

They tell you that you will feel weak and sick and have no energy, but other than that they can't explain how it will really feel. Thinking about it now, it's hard to explain myself. The days after chemo feel like a nasty hangover … minus the fun night before. The weakness is from a mixture of nasty meds and weight loss. The other day I got a pan of brownies out of the oven and could hardly lift the thing. I think the strength I had to get it out was fueled by my chocolate craving. Having no energy is really hard for me. Not that I was super active before cancer but being so tired that I get out of breath walking from one end of the house to the other is hard. I see people on runs outside and I get jealous. Never in a million years would I have thought I would be jealous of someone running.

They don't prepare you for the emotional rollercoaster that you involuntarily get in line for the day you are diagnosed with cancer. They say "you will have good days and bad days.” They should tell you that bad days begin when you wake up from good dreams to remember that you're sick. On bad days you will want to hide under the covers and cry. On bad days you can't eat or sleep or even walk. Bad days will drain you. Good days will fill you up again, with visits from friends and good weather and pizza and a simple trip out of the house. I cherish the good days and try to find joy in simple things like cheese fries

Needles. You'd think I'd be used to them by now … Nope.

Lastly, I wasn't prepared for the support I have received. I wasn't prepared for you, you people reading this and praying for me and keeping in touch with me.

From day one I was overwhelmed by the texts I got from people … most of which I forget to respond to, I'm the worst texter … I'm sorry! But a simple text is one of the things I find joy in. I am amazed every day by the people that reach out to me, people that don't even know me, people that have been affected by my words or affected by cancer themselves. I have a drawer full of the cards that I've gotten and soon that drawer won't be big enough.

If beating cancer was a sport it would be a team sport. I don't think anyone can truly do this alone and I am so beyond grateful that I don't have to.