• Pediatric Behavioral Health – Top 50
• Pediatric Cancer - #41 in the nation
• Pediatric Endocrinology - #35 in the nation
• Pediatric Neurology and Neurosurgery - #33 in the nation
• Pediatric Orthopedics - #49 in the nation
• Pediatric Pulmonology - #48 in the nation 

Cook Children’s Neurology and Neurosurgery programs jumped an impressive 12 spots in the rankings, from No. 45 in 2024-2025 to No. 33 in 2025-2026. 

“For 18 consecutive years, the Cook Children’s Neurology and Neurosurgery programs have been recognized for the high quality of care we provide each and every day. We established the Jane and John Institute for Mind Health to further strengthen our ability to provide comprehensive, coordinated and innovative care ensuring better outcomes for the children in our community and beyond,” Cynthia Keator, M.D., medical director of Neurology and Scott Perry, M.D., head of Neurosciences at the Justin Institute, jointly stated. “This year’s ranking recognizes those investments and is only a glimpse of what the future holds.” 

Cook Children’s Diabetes and Endocrinology programs moved up nine spots in the rankings, from No. 44 last year to No. 35. 

“Our team is dedicated to improving the quality of care and the patient experience for our children with diabetes and endocrine diseases,” said Paul Thornton, M.D., medical director of Diabetes and Endocrinology at Cook Children’s. “Our department has been recognized nationally and internationally for our Centers of Excellence and we are delighted that this has translated into this honor by the U.S. News & World Report.”
 
U.S. News & World Report evaluated children’s hospitals based on a variety of factors, including quality of care, clinical research programs, services and surgeries performed patient and family involvement and access to resources, staff dedication, recognition as a Nurse Magnet Hospital, and more. 

For Cook Children's Health Care System as a whole, the rankings highlight longstanding excellence in a variety of areas.

“For over a century, Cook Children’s has been committed to providing the best possible care and improving the well-being of every child,” said Rick W. Merrill, President and CEO of Cook Children’s. “Being honored once again by U.S. News & World Report validates the exceptional dedication of our entire staff in fulfilling our Promise.”
 

It is a heartbreaking position for any parent to be in — knowing that a potentially life-saving drug treatment may also cost your child the ability to hear. This was the difficult reality for Brant and Ashley James after their son, Pierce, now 3, was diagnosed with a rare cancer. 

In his nearly 4 years of life, Pierce James, who his family calls Fierce Pierce, has faced more challenges than many adults experience in an entire lifetime. He was born at the edge of viability at 25 weeks gestation and spent 83 days in a neonatal intensive care unit. Even so, Pierce thrived as an infant and toddler despite some delays due to his prematurity.

But four days before his 2nd birthday, the James family received devastating news.

Just as Brant and Ashley were on the mend from a bout with COVID, Pierce seemed to be coming down with the virus as well. So Brant took his son to an urgent care close to their home in Rockwall to get checked out. He was soon told it wasn’t COVID. Instead, physicians suspected something much more serious and arranged for Pierce to be transferred to a nearby hospital. 

“About four hours later, I received a phone call from the doctor and my husband, and the words out of the doctor’s mouth was, ‘We have some bad news to tell you,’” Ashley said. “At that moment, they told me that they were pretty confident that Pierce had cancer.”

In fact, Pierce had a rare liver cancer called hepatoblastoma. It was classified as stage 4, metastasized to his lungs and required aggressive chemotherapy to treat. 

Risk and Reward

Throughout the course of his treatment, Pierce experienced several setbacks, some of them life-threatening. But one complication was particularly difficult for Ashley to reconcile. 

Pierce’s chemotherapy protocol included a drug called cisplatin. While it is effective at killing cancer, it is also an ototoxic medication, meaning it can damage the inner ear and cause hearing loss. Thanks to the chemotherapy protocol, Pierce is now cancer-free, but he does have permanent and profound hearing loss. 

“The cancer is gone and we're believing it's never ever coming back,” Ashley said. “But the hearing loss, without a miracle from God, is irreversible. It's not going to change and it’s just very hard. I've come to terms with it, but it's still very hard for me that my baby has lost his hearing because, I'm like, hasn't he suffered enough?”

Once the cancer was under control, Brant and Ashley turned their attention to dealing with Pierce’s hearing loss. As a then 2-year-old, Pierce was at a critical point for speech and language development. His parents wanted to be as persistent with audiology interventions as they were with chemotherapy. The family turned to Cook Children’s Pediatric Audiology services for help.

“There are certain chemotherapies that cause hearing loss in children and adults. So we're very involved with Hematology and Oncology,” said Lisa Vaughan, AuD, manager of Cook Children’s Audiology services. “A lot of times we do testing prior to the kids starting chemo. We get a baseline hearing test for every kid before they start, and then we monitor them throughout all of their treatment.”

Sometimes, if hearing loss is suspected, treatment can be adjusted. Other times, as in Pierce's case, hearing loss is the lesser of two evils. 

“It's really hard because it's just one more thing for these families,” Dr. Vaughan said. “Your child has cancer and we now have to watch their hearing. You're going to go through some really horrible treatments, and then when we're done with this and things are better, we may be saying your child’s hearing is permanently damaged. It’s a hard conversation because these families have been through so much.”

Cook Children’s Audiology services moved quickly to help Pierce. He completed his final round of chemotherapy in September 2022 and, by the end of that month, also had his first set of hearing aides.  

The New Age of Sound Waves

Each year, one to three out of every 1,000 babies are born with hearing loss. Others experience hearing loss from trauma or as a result of medical treatment. 

 Because of developments in audiology technology there is hope for hearing-impaired children.  Dr. Vaughan says with early intervention, children with hearing loss perform as well as their hearing peers academically. 

“We can do the surgical cochlear implant as early as nine months to get a baby hearing great so that they can compete with their hearing peers,” Dr. Vaughan said. “The other big thing on the horizon is unilateral loss and being able to implant a cochlear device in just one ear. In the past we've thought hearing from one ear will suffice. But what we've realized over the last 15 years is that kids with hearing loss in one ear have lots of trouble in the classroom because of background noise and localization. Now we can make both ears equal.”

Hearing aids have come a long way, too. Gone are the days of manually turning the volume or frequencies on hearing aids up and down using a screwdriver. Now, hearing aids are sleeker, come in multiple colors, are equipped with bluetooth technology and are digitally programmed to allow individuals to hear everything from the tiniest frequency to the biggest sound.

Cook Children’s Audiology services offer these interventions, as well as bone conduction implantable hearing devices and a full range of auditory testing. They also provide protective devices such as custom earplugs, like those that help protect the hearing of musicians while also allowing them to hear each musical note. 

“Musician plugs have a filter on the end that allows musicians to hear the sound but at a lower volume. They do not distort or affect the quality of the music,” Dr. Vaughan explained. “We see a lot of performers now with monitors in their ears. Those are also to protect their hearing so they can perform longer. These are great for kids in high school bands or those that like listening to loud music.”

Early Ear Intervention

Protecting your child’s hearing and having your newborn screened for hearing loss are the two most important things parents can do for their child’s audiology health and for their speech and language development. 

Newborn hearing screenings are required at any birthing center with 50 or more births per year. If a baby fails the screening at birth, they can be rescreened at one month. If they fail the second screening, a diagnostic evaluation can confirm hearing loss by three months and intervention can begin by six months, giving a child the best chance at language development on par with their hearing peers. 

“Without that, when we wait until they are two or three and discover their words aren’t sounding great or they aren’t talking at all, then their brains have missed two to three years of learning,” Dr. Vaughan said. “It’s really hard to backtrack to correct. Newborn hearing screening is so very important. If we do the hard work on the front end and get things moving, hearing impaired children perform at equal levels to fully hearing children.”

The James family’s urgency to have Pierce fitted for hearing aids as soon as possible following cancer treatment set their once-hearing child on a course to recover as much speech and language development as possible. Since the completion of cancer treatment one year ago, Pierce has relearned to crawl and walk, and recovered many fine motor skills. He’s beginning to vocalize a number of sounds, too, including the sweetest sound to every mother’s ears — her baby calling for “mama.” 

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Exploring pediatric audiology and advancing development for children with hearing loss | CookChildrens.org

If you talk to Caitlin Schwartz for even a few minutes, you will learn she is wise beyond her years. In the last two years of her life, she has endured more than most can even imagine. Still, she wears an infectious smile and shares her story with clarity, humor, and resilience. 

Caitlin’s Diagnosis

In September of 2021, Caitlin woke up to a pain in her right shoulder. She thought she might have slept on it wrong or hurt it in gymnastics, which she practiced once a week. Caitlin and her mom, Jessica Allen, initially didn’t give the pain much thought. But when it grew progressively worse over the next couple of months, they decided to make an appointment with her pediatrician.

Four weeks later, a pediatric orthopedic specialist took X-rays of Caitlin’s shoulder and initially suspected that her shoulder blade was broken. Caitlin got an MRI that same day and received the results a day later.

Jessica, who is a teacher, was in her classroom when she got the life-changing phone call. Caitlin had not broken her shoulder blade — she had cancer. Jessica first took Caitlin to Cook Children’s as soon as possible and was admitted just a couple of days later. 

“They diagnosed me with Ewing Sarcoma in my right shoulder blade,” Caitlin said. Ewing Sarcoma, named after Dr. James Ewing, who first described the tumor in the 1920s, is a rare type of bone cancer that most commonly occurs in children and teens. By the time Caitlin’s tumor was discovered, it was so large that it covered her entire shoulder. Thankfully, her cancer was stage two and was isolated to her shoulder.  

Only the Beginning

For the next six months, Caitlin completed chemotherapy at Cook Children’s. Starting in May of 2022, she underwent a total of 36 sessions of proton radiation on her shoulder at Texas Oncology. Caitlin experienced every side effect in the book from chemotherapy, including hair loss, nausea, and weight loss. She also got radiation burns, for which she had to take special medication.

Miraculously, by the time Caitlin had finished all of her treatment in October of 2022, her scans were clear. She and her family enjoyed a huge celebration for her birthday, the end of chemo, and achieving remission. Little did they know, Caitlin’s battle was far from over. 

Caitlin went back to school for only three days before she started to feel extremely sick. Jessica brought her back to Cook Children’s for emergency lab work. Shortly thereafter, Kenneth Heym, M.D., of Cook Children’s Hematology and Oncology, diagnosed her with Secondary Acute Myeloid Leukemia (AML). 

“She just totally threw everybody for a loop when she came into the hospital and her blood counts were abnormal,” Dr. Heym said.

Caitlin had contracted AML from one of the chemotherapies used to treat her Ewing Sarcoma. “Secondary leukemia can happen after treatment for solid tumors like Caitlin’s, but it’s pretty rare,” he says.

Jessica wasted no time in asking Dr. Heym for a prognosis — and he told her the survival rate for AML was very low.

“He told Caitlin she had a less than 50% chance to beat this,” Jessica said. According to Caitlin, Dr. Heym had “never been so straight up.”

“We know that secondary leukemias that are caused by chemotherapy are very, very difficult to treat,” Dr. Heym said. “And if you want to cure them, your only chance is going to be bone marrow transplants.”

The problem is, bone marrow transplants won’t work unless the patient is in remission — which is very hard to achieve with AML. 

“She was understandably upset because she was looking forward to being done,” Dr. Heym said. “But she still maintained that positivity and that smile and that snarkiness and all of those features that just endear you to her immediately.”

Restarting

To treat Caitlin’s AML, Dr. Heym started her on what he calls “blow you out of the water” chemotherapy. It was extremely harsh on Caitlin’s body and ultimately unsuccessful. Luckily, he found a clinical trial at MD Anderson Cancer Center in Houston for patients Caitlin’s age with her leukemia’s specific type of genetic abnormality. 

Caitlin and her mom headed to MD Anderson. After a few trips back and forth, Caitlin was admitted in January of 2023 to start the clinical trial protocol. Caitlin started on a new form of chemotherapy, which her body responded to much better than the first.

She also began the clinical trial drug itself — a Menin inhibitor, which is in clinical development for the treatment of genetically defined subsets of acute leukemia.

Once again, Caitlin made a remarkable recovery. After completing her clinical trial, her AML was gone.

“They said she was the fastest person to ever achieve remission there,” Jessica said. According to Dr. Heym, Caitlin’s remission is “nothing short of a miracle.”

The next step in Caitlin’s treatment was her bone marrow transplant.

“She's basically restarting her body, but with my good cells and my good blood in hopes to keep her cancer away and prevent relapse,” said Jessica, who was her transplant donor.

Caitlin completed her transplant on May 4 of this year. Her family and doctors refer to that date as her “rebirth day.” The aftermath was extremely tedious on Caitlin’s body, and she was hospitalized for almost seven weeks.

“Nothing Short of a Miracle”

Despite wreaking havoc on Caitlin’s body, her bone marrow transplant was incredibly successful.

Though Caitlin’s labs look great and she’s been doing exceptionally well, she has run into some hiccups with side effects. She developed a hematoma, had some chemoport issues, and developed pericardial effusion, which is a buildup of fluid around the heart. She is still fighting to get her immune system back to normal and even though she is in remission, she is not out of the woods quite yet.

“There is still a good chance that her leukemia is going to come back, and if it does, it's going to be that much harder to treat,” Dr. Heym said. “But she’s beaten the odds so far in terms of where she's gotten and how well she's doing, so if anybody’s going to continue to do that, it's going to be Caitlin.”

Caitlin recently got cleared to start taking her Menin inhibitor again post-transplant. Because transplants wipe out all immunizations, she will stay home from school for another year and start immunizations in the spring. Her original Ewing tumor is still on her shoulder, but it’s much smaller than it was and will eventually turn into scar tissue. Moving forward, Caitlin will continue to have follow-up appointments for her side effects and will be closely monitored to ensure her AML and Ewing Sarcoma stay in remission. 

Finding Joy and Sharing Smiles

Throughout her battle, Caitlin has found joy in the hospital’s fur babies and friends she’s met along the way.

“If a dog wasn't hanging around, she would ask a nurse to go find her one,” Jessica laughs.

Caitlin also made friends with other kids and families wherever she went, whether it was on the HO floor at Cook Children’s, at MD Anderson, or anywhere in between. “We joked that she was the mayor of the floor when she was here because she would just walk around talking to everybody,” Dr. Heym says with a smile.

Caitlin has also selflessly volunteered to participate in Cook Children’s research studies. “She wanted to help other kiddos from the beginning,” Jessica said. “I also told her that other kiddos need to hear her story because she might have a friend who’s diagnosed with something similar one day.”

Right now, Jessica and Caitlin are taking every new day in remission as it comes and leaning on their village of family and friends for support.

“We're working on just being able to be a kid again and do all the stuff we've missed out on the last two years,” Jessica said. “We’re just looking forward to some kind of normalcy after all of this.”

Through it all, Jessica and Caitlin have learned to cherish the time they have together.

“When you have to watch your kiddo fight for her life, it just forces you to move everything else to the back burner,” Jessica said.

She admits that when Caitlin was diagnosed with AML, she didn’t think she would make it to Christmas. Caitlin, with her tenacious spirit, chimes in, “I didn’t think that!” It’s no wonder cancer has been no match for her.

“No child that age should be challenged as much as she has,” Dr. Heym said. “But she continues to show us that she's going to meet every challenge with courage, grace, humor, and attitude. Nothing, whether it's cancer or the treatment, is going to stop Caitlin from being Caitlin. And I feel lucky to have been able to help take care of her.”

To keep up with Caitlin’s journey, follow Jessica on Instagram @thestoryofthree. 

By Charlotte Settle

The unstoppable Rebekah Tate is a proud graduate of Baylor University, a former Algebra 1 and IB Math teacher at Arlington High School and a current professional organizer. She is also a survivor of childhood cancer. On July 28, after 27 years at Cook Children’s, Tate celebrated her very last appointment as a Life After Cancer patient. Though it’s a bittersweet departure, she carries nothing but fond memories with her into her next chapter of survivorship.

When Tate was only three months old, her parents noticed a lump below her right knee. Her grandmother, who was a nurse, suggested they get it checked out sooner rather than later. Tate’s parents lived in Arkansas at the time and took her to Arkansas Children’s Hospital to have the mass examined. After performing a biopsy, the doctors found that it was a cancerous tumor. Tate was diagnosed with Alveolar rhabdomyosarcoma (ARMS) — a cancer of the muscle tissue.

Shortly thereafter, Tate’s family relocated to Arlington and continued her care at Cook Children’s. Her surgeon, Mayme Richie-Gillespie, M.D., first attempted to remove Tate’s tumor via resection. The procedure was ultimately unsuccessful and the next best option for treatment was amputation. Though it was an extremely difficult decision, Tate’s parents chose to move forward with the operation.

At a little over four months old, Tate had her leg amputated from above her knee. Miraculously, the procedure worked and she was completely cancer-free from then on. 

“I was born in November and it happened April 2. That’s what I count as my cancer-free date,” she said.

After her amputation, Tate completed three different types of chemotherapy over the course of nine months to ensure her cancer didn’t spread elsewhere in her body. In her 27 years since then, she hasn’t received any more treatment related to cancer.

“I was lucky because the chemo did its job in the sense that it was there to catch anything that might have spread,” she said.

When Tate went through chemo as a baby, she lost her hair and got sick frequently. Her main side effect since then has been dental issues, which her doctors attribute to her teeth still forming when she underwent treatment.

“I'm missing a lot of adult teeth and I still have baby teeth,” Tate laughs. “My dentist always says they're going to come out soon and I’m like, I don’t need to know that!”

After she completed chemo, Tate had routine check-ups and MRIs on her leg until she was about 5 or 6 years old. From that point on, she transitioned to the Life After Cancer Program (LACP) at Cook Children’s. Most of Tate’s appointments since then have consisted of routine check-ups and blood work — thankfully, she has remained healthy and cancer-free throughout the years. Now that she has graduated from LACP, her general practitioner will take over the care she has received at Cook Children’s.

Though Tate had been preparing for her last appointment at Cook Children’s for years, it was still an emotional event.

“When I walked in, I just assumed they would say they were going to keep me another year,” she said. “It wasn’t a happy or a sad moment. It was just an emotional moment.”

A Special Bond

A couple of months before her last appointment, Tate was notified that her nurse practitioner of 23 years, Lisa Bashore (PNP), would be transitioning to a different area of the hospital. Naturally, Tate was shocked and thrilled when Lisa made a surprise appearance at her last visit.

“She came to see me at my last appointment and I just started crying,” Tate said. “She’s the world’s most incredible nurse. It was such a big moment.”

Bashore took care of Tate since she started working at Cook Children’s in 2000.

“Rebekah always thrived and the sky was the limit. There were no limitations for that young lady,” Bashore said. She especially enjoyed getting to see Tate’s new prosthetic leg every year. “I just couldn't wait to see the new design,” she said. “She loved to show off her leg. I think that shows her resiliency.”

Tate laughs as she recalls Bashore constantly grilling her about wearing sunscreen.

“It doesn't matter what treatment they had, I always encourage survivors to be mindful of those general health practices that will potentially minimize the risk of relapse,” Bashore said.

Tate now wears her sunscreen every day — not just because she knows it’s good for her, but because Bashore cared enough to remind her year after year. 

“Just her yearly piece of my life was a big piece of my life,” Tate said.

Bashore admits that watching Tate transition out of LACP was emotional for her, too. “I've been with her since I’ve been at Cook Children’s,” she says. “It’s been incredible helping her get through this.”

This isn’t the end of their relationship, though. Bashore keeps her door open to all of her former patients, offering them a space to chat and ensuring their needs are met with their new doctors.

“We just want them to know that we are here,” she says.

Prosthesis

Even more than cancer, Tate feels her prosthesis has had the greatest impact on her life.

“It was really the leg that changed me, even though cancer was the cause,” she says.

Tate got her first prosthetic leg at 10 months old and has gone through about 24 total as she has grown over the years. 

“I used to hate when people would come to talk to me about it because it made me different, but now it's something that connects me to other people,” Tate said. 

Tate notes that Cook Children’s and her prosthetics hospital have always been in close contact regarding her care.

“At Cook Children’s, they always asked about my prosthesis,” she said. “Once I had to leave my children's hospital for prosthetics, they asked me if I needed help finding somewhere to go. So they’re very interconnected.”

When Tate was little, she didn’t understand that most kids who have cancer don't have prosthetics.

“When we went to events at Cook Children’s, I always expected to see other kids with prosthetics and I just never did,” she said.

In high school, she had a game-changing experience when she got to go on a trip with other amputees for the first time.

“It was a ski trip and we all skied in different ways — some sitting, some standing, some snowboarding,” she said. “Hanging out with people who had the same experience as me growing up was just powerful.”

Tate feels her prosthesis has allowed her to connect with people in ways she otherwise might not be able to. It has allowed her to form impactful bonds with others like her — including a student she would see in the hallway at Arlington High School who also had a prosthesis.

“I remind myself that I wouldn't have had so many opportunities or met so many people if I didn't have this challenge — or blessing,” she said. “I never want kiddos to have to go through that, but if they do have to, I want to be someone who’s there to check in on how they’re feeling.”

Cook Children’s Community

Throughout the years, Tate and her family found community, comfort, and joy through Cook Children’s events. They often attended “Celebrate Life” — a festival on campus at the hospital for kids who had beaten cancer and their families.

“It was a really cool event because normally when you come to the hospital, it's scary,” Tate said. “This was just all about crafts, food and fun.”

She laughs about the fact that there was a butt sketch artist working at the event one year. The sketch of her family’s butts still hangs in a bathroom at her parents’ house to this day.

For several summers, Tate’s family also attended Camp Sanguinity at Camp John Marc — a program designed specifically for children with cancer and their families.

“It’s built to accommodate kids who are going through any type of treatment,” Tate said. “We kind of built a community we could connect with over our experiences.” The patients’ doctors and nurses tagged along on the trip, too. “It was cool to get to grow with those people,” she says.

To Tate, Cook Children’s will always be the world’s most special place.

“When I go to my regular adult general practitioner, it's gray,” she said. “It’s so different at Cook Children’s, because it's bright and exciting and colorful. It's a somber place because people are struggling and in so much pain, but they work so hard to be there every step of the way.”

Because Cook Children’s has been such a special part of her life, Tate regularly contributes to the organization however she can.

“I watch their wish lists online and I collect a lot of soda tabs for the Ronald McDonald House,” she said. “Because they've done so much for my family and so many families, I’m always sharing on my Instagram story when Cook Children’s is in need of something. The money or the time that you’re giving is going towards incredible things to help kiddos stay alive.”

Though Tate’s cancer happened nearly three decades ago, it’s still a very sensitive topic for her parents.

“It's not fresh, but it was a big deal,” she said. “It’s a big shock, having that happen to your first kiddo. I can’t even imagine the decisions that they had to make regarding their newborn baby.”

Tate’s parents have been her biggest advocates and cheerleaders every step of her journey.

“They raised me in a way where they told me nothing could stop me or hold me back,” she said. “They always asked, how can we do it differently?” 

Though it hasn’t been an easy road, her parents have found solace in connecting with other parents and families at Cook Children’s.

“That was a big thing for them, because there's no way you can handle that either by yourself or even with your spouse,” Tate said. “You have to have community.”

Adolescent and Young Adult Child Life Specialist at Cook Children’s, Lauren Bridge, speaks to the importance of holding space for families of those battling cancer.

“I love incorporating parents and siblings into the conversation,” she said. “Sometimes it’s just talking to a mom about questions a patient’s younger sibling has and meeting that sibling’s needs to maintain some sense of normalcy.”

Bridge works with patients — some teenagers and some closer to Tate’s age — who are still fighting their battles with cancer. She holds space for them to address their emotions, grapple with the concept of mortality and ask questions they might be afraid to ask.

“As they're trying to figure out who they are and develop independence, we're telling them they’re actually going to be stuck in a small room and not really given a lot of choices,” Bridge said. “I love convincing them to leave their rooms and go do something, even if it’s just a game of pool and a little bit of trash talk. I’ve found that during those walks down the hall, they really open up and I see a side of them I haven’t seen before.”

One of Bridge’s favorite things about her job is reconnecting with patients who have achieved remission and are back to living their normal lives — all of whom, like Tate, have gone through the Life After Cancer Program.

“LACP just really helps them go from being in true remission to transferring into the adult world of medicine, or really just out of oncology because they don't need us anymore,” she said. “It's so incredible that we help patients with that transition here at Cook Children’s.”

Cook Children’s employees Ashley Pagenkopf and Danny Peltier were in for a big surprise Tuesday when Kidd’s Kids announced their families are going on an all-expenses-paid trip to Walt Disney World!

Every year, Kidd’s Kids takes 30 to 50 children with life-altering or life-threatening conditions and their families on an all-expenses-paid, five-day trip to the magic kingdom.

Emergency medicine physician Dan Guzman, M.D., who serves as a Kidd’s Kids board member, and Cook Children's team members surprised the two families with the announcement, Disney-themed balloons and pairs of Mickey Mouse ears at the Child Life Zone.

“We’re going to Disney!” said Ashley Pagenkopf, a child life specialist in the Cook Children’s emergency department. “I can’t believe it. None of my kids have ever been and I was 12 years old the last time I went, so it’s really exciting. We wanted to take the girls but we cancelled a trip because it was just too much. None of us expected this!”

In April 2022, Ashley’s middle daughter, Averly, began having seizures and was diagnosed with a glioneuronal tumor. She underwent surgery in August and has been seizure free since. Every three months, Averly visits St. Jude Children’s Research Hospital for follow-ups.

“She’s doing awesome – clearly!” Ashley said. “She’s so crazy strong. Kids are so resilient.”

Ashley said she looks forward to experiencing moments of magic with her girls and other families on the trip.

Danny Peltier, practice manager for Cook Children’s Outpatient Psychiatry, says he also looks forward to building memories with his family at Disney World.

“It’s just something we weren’t able to make happen on our own yet,” he said. "So this is going to be a lot of fun for the family!”

Peltier and his children, Will and Evelyn, have a rare genetic condition called hereditary spastic paraplegia, which presents similarly to cerebral palsy but only affects their lower extremities.

“I’m excited to see their faces once we get through the gates and they can just take it all in,” he said. “It’s going to be a lot of fun!”

Kidd’s Kids is a nonprofit founded by the nationally-syndicated Kidd Kraddick Morning Show based on 106.1 KISS FM in Dallas-Fort Worth. The annual Kidd’s Kids trip is made possible by donations and an army of volunteers, including doctors and nurses who make the trip to help the families. 

“We take a team of physicians, nurses, paramedics, child life specialists and respiratory therapists,” Dr. Guzman said. “We go and serve the kids.”

Dr. Guzman says oftentimes the children and families who go on the trips have been patients at Cook Children's. The medical team’s goal is to make sure that the children enjoy the parks without having to worry about any medical needs. If any issue does arise, the team is there to help the children get through it safely. 

“To be there, to enjoy it, to watch their faces and see that love – ah, it’s amazing - you can’t script that at all!” Dr. Guzman said.
 

Story by Heather Duge. Video by Tom Riehm.

When Shelbie Collins signed up for a camp just for kids with cancer in 2008, she had no idea the countless ways it would change her life.

As she battled cancer, little did she know that her future husband, Kaleb, was in his own fight with cancer and that their paths would intersect at Camp Sanguinity.

A Shocking Diagnosis

On the last day of second grade, Shelbie Collins woke up lethargic and not feeling well. Her mom thought it could be a virus but took her to Sandra Peak, M.D. of Cook Children's Pediatrics Lewisville - Castle Hills, just to be sure. At the office in Carrollton, Dr. Peak noticed a contusion on Shelbie’s arm and bruising on her chest. She suspected leukemia and immediately ordered blood tests.

“In that kind of situation, you’re working five steps ahead of what is happening in the room,” Dr. Peak said. “I ordered blood tests stat.”

That same day, Dr. Peak had to make the phone call every pediatrician dreads. She was not able to reach Shelbie’s mom, so she called her dad.

“That is a conversation that will forever be etched in my mind,” Dr. Peak said. “Her dad was instantaneously devastated and ready to attack the cancer. The security Shelbie’s parents had in their child’s health was pulled out from them instantly. That one phone call changed everything.”

Journey to Healing

Shelbie remembers her dad setting her on his lap and saying the words “you’re sick and we’re going to take you to Cook Children’s and will be by your side the whole time.” But Shelbie says it didn’t really sink in until she was at the hospital and heard the words “acute lymphoblastic leukemia” and “chemotherapy.” 

W Paul Bowman, M.D., Shelbie’s oncologist at Cook Children’s, would lead the team providing Shelbie’s comprehensive care. 

Treatment began immediately and a couple of weeks in, she underwent surgery to receive a port. Dr. Bowman talked to her parents about a therapy program he coordinated – Total XV protocol which is a research partnership between Cook Children’s and St. Jude Children’s Research Hospital that includes three phases and lasts 2 and a half years. 

Shelbie’s parents agreed to the protocol, and the first phase, induction, involved 46 intense days of chemotherapy. During the second phase, consolidation, Shelbie received high dosages of chemotherapy for three to four days biweekly. After two months of phase two, Shelbie moved to the final phase, continuation, with chemotherapy once a week.

“Through the inevitable ups and downs of chemotherapy, Shelbie remained a positive and happy child,” Dr. Bowman said. “She was always inquisitive and wanted to participate actively in her treatment with an understanding of the purpose behind each procedure and medication.”

Taking a Turn for the Worse

Sixteen months into her treatment, Shelbie’s doctors discovered she had gallstones. Later that evening, she spiked a fever and developed sepsis, a severe illness caused by an overwhelming infection of the bloodstream by toxin-inducing bacteria. Her kidneys shut down, and within 24 hours, she was in septic shock. Dr. Peak rushed to the hospital.

“When I walked into her ICU room, she was surrounded by so many doctors and nurses and on a ventilator. I could see the devastation in her parents’ faces. In that moment, it was the most fear I have ever felt as a physician.”

Dr. Peak and Shelbie’s other doctors discussed options as she only had a less than 1% chance of making it through the night. Britt Nelson, M.D., and the other doctors decided dialysis was the only option for her to have a chance at survival. Dr. Nelson's idea to do dialysis saved Shelbie’s life, Dr. Peak said.

“She was very sick,” Dr. Peak said. “Angels were flying so low around her that night.”

‘Miracles do Happen’

Shelbie was in an induced coma and fought through the infection for nearly three months in the hospital, not able to receive any chemotherapy. As the infection proved relentless, Shelbie proved resilient. She overcame sepsis and had to relearn how to walk and eat again.

What was planned for six months in rehabilitation ended up only being six weeks. After only three weeks, Shelbie’s determined spirit was on display as she started walking on her own.

“It was amazing to see Shelbie after that, walking into my office with all her energy and positivity. She is a reminder that miracles do happen.”

Shelbie’s cancer ultimately was put into remission, and she remains cancer-free.

Another Journey with Cancer Begins

In 2007, as Shelbie was nearing the end of her treatment, Kaleb Collins was just beginning his journey with cancer at Cook Children’s. He was 10 years old at the time and played baseball almost every day in his hometown of Wichita Falls. So, when Kaleb’s right knee began to swell, his parents thought it was a baseball injury.

After the first set of scans, doctors initially thought it was a growth plate fracture, but full body scans later revealed a different diagnosis – osteosarcoma (bone cancer) in his knee. 

Dr. Bowman also served as Kaleb’s primary pediatric oncologist as Kaleb underwent chemotherapy and a total knee replacement while taking part in a childhood cancer research study which involved 70 weeks of injections. In early 2010, Kaleb finished his treatment.

“Both Shelbie and Kaleb were fortunate to have the support of loving parents and family who contributed to a sense of security and emotional stability during their prolonged course of treatment and follow-up,” Dr. Bowman said. “They faced childhood cancer with courage and determination.”

“Looking back, I feel blessed,” Kaleb said. “I had a great mentor who was treated at Cook Children’s years ago and helped me through. I remember the people who cared for me always looking for ways to distract from the reason I was there, like Dr. Donald Beam and Dr. Kenneth Heym who would play games with me and amazing nurses who still keep in touch.”

Once-in-a-Lifetime Meeting

During the summer of 2008, Shelbie and Kaleb arrived at Camp Sanguinity – it would be her last year and his first time as a camper at a place they both found to be their safe haven. After meeting and sharing each other’s stories, they realized a common bond: they both viewed cancer as a part of who they were but something that did not define them.

“Having gone through cancer, we have more empathy for each other and a different lens for us to look at others,” Shelbie said. “We took our experiences and turned them into that strength.”

Kaleb describes his time at camp as an incredible week where kids with cancer just get to be kids.
In the summer of 2014, Shelbie and Kaleb went back to the camp for a leadership retreat for childhood cancer survivors. This time they reconnected and stayed in touch.

Shelbie remembers the day their relationship shifted to being more than friends when she visited him after surgery in December 2014.

“Sparks flew almost instantly,” Shelbie said. “I remember Kaleb texted me on my way home.”  

A New Chapter Together

Five years later, Kaleb proposed to Shelbie and the next chapter of their lives began in Oklahoma. Knowing the couple may have difficulty getting pregnant after undergoing chemotherapy, they were referred to a fertility specialist. While waiting for the appointment, Shelbie found out she was pregnant with their miracle baby. One of her first thoughts was moving back to be close to family and another very important person to them – Dr. Peak.

After their son, Graham, was born in 2021, the couple decided it was time to move closer to home.

“I made an appointment with Dr. Peak,” Shelbie said. “She started bawling. Graham was three months old when he first met her. Dr. Peak being Graham’s doctor has been the cherry on top. Watching her take care of our miracle baby is the biggest blessing to us.”

Dr. Peak feels the same way and loves her “grandpatients.”

“I have always wanted to be a doctor since I was a kid and played clinic for fun,” Dr. Peak said. “It is moments like taking care of Graham that remind me how blessed I am to be there for the whole family.”

Gaining Strength from her Patients

When Dr. Peak was faced with her own health challenge a couple of years ago, it was her experience with Shelbie that helped her get through the tough times.

“When someone tells you it’s cancer, your whole world crashes,” Dr. Peak said. “It had been years of me giving that news and I never dreamed I would be on the other end.”

In moments of despair, as she fought through treatment to fight breast cancer, Dr. Peak thought of Shelbie and other kids who handled cancer with such grace and strength.

“How could I not be strong?” 

Giving Back to Others

Shelbie and Kaleb visit Cook Children’s for annual checkups together and provide research on the protocols as part of the Cancer Survivor Program. They have a passion for giving back in ways they were given – such as being counselors at camp. They served in that role for four years and have plans to go back.

Kaleb said he shares hope with the campers at Camp Sanguinity by showing them they have a lot to look forward to as survivors, counselors and even having a family one day.

“Camp is everything,” Shelbie said. “It is so impactful, and we have every intention of going back as counselors this year.”

Shelbie also regularly gives back in another way – her job. She says that watching nurses interact with families while she was a patient and shadowing in the Hematology-Oncology Clinic at Cook Children’s gave her a passion for helping others in the medical setting but in a different area.

“I wanted to save that part of life for camp,” Shelbie said. “It hit a little too close to home being back in the Oncology area.”

Shelbie now works as a nurse in the postpartum unit at a local hospital.

Part of the Family

Dr. Peak beams as she talks proudly about Shelbie and all she has overcome. She truly feels as if Shelbie and her family are part of hers now.

“I carry my families and kids with me, and they will always be a part of me,” Dr. Peak said. “Shelbie is with her miracle baby now, but she is my miracle baby.”

Go here to view Camps for Kids at Cook Children's.

It’s hard to imagine how a stroke could be a blessing in disguise, but Joseph and Allison Turner believe it was for their son, Owen, when he was just 8 months old.

“The stroke caused all kinds of battles that we’re still battling today, eight years later, but it saved his life,” Turner said.

When Joseph noticed Owen wasn’t moving the right side of his body while playing with his baby on a Sunday morning in January 2014, he and Allison knew something was terribly wrong. In addition to the loss of movement, their otherwise happy and content baby was fussy and irritable. He was suddenly behaving differently than he had been just a few days earlier when Allison took Owen to his pediatrician to check out a few bumps that appeared on the top of his head. Initially thought to be cysts, the doctor scheduled Owen for a return visit the following Monday to have them rechecked. But the changes they saw in Owen that Sunday morning led them to rush to the nearest emergency room in Cleburne, Texas, just one day before their scheduled follow-up appointment with Owen’s pediatrician.

Things moved quickly at the ER. It was apparent to doctors there that Owen’s condition warranted a more specialized level of pediatric care than could be given at their hometown hospital, so doctors called a helicopter ambulance to transport Owen to Cook Children’s Medical Center. Joseph wanted to be at Cook Children’s as soon as the helicopter landed with his son, so he jumped in his truck to make the 30-minute drive to Fort Worth. Allison stayed behind with Owen to travel in the helicopter with him.

As they were waiting for the air transport doctors were simultaneously running a number of tests to try and determine the cause of his stroke and interrupt further damage as quickly as possible. A diagnosis came quickly, and it was beyond belief for Allison—acute myeloid leukemia (AML), a fast-growing blood cancer that worsens quickly if not treated.

“Absolutely not,” Allison said describing her initial reaction. “There must be something else. It can’t be. This is my perfectly healthy baby.”

But Owen was critically ill. Abnormal leukemia cells were quickly building up in his blood and crowding out normal cells, which Allison says thickened his blood and led to the stroke. The bumps that appeared days before turned out to be clusters of leukemia cells sitting on top of his head. Had the stroke not prompted the Turners to take Owen to the ER, doctors told the family he may not have lived to make it to his scheduled doctor’s appointment the next day.

Allison rode with Owen in the helicopter to Cook Children’s in shock. Their lives had just changed forever, but there was no time to dwell on their disbelief. At Cook Children’s, Owen was immediately admitted to the pediatric intensive care unit (PICU) and met by Kenneth Heym, M.D., a pediatric oncologist and medical director of Cook Children’s oncology program. Dr. Heym wasted no time treating Owen’s cancer. That very Sunday night, the Turner’s baby boy began his first round of chemotherapy.

For the next four months, Cook Children’s was the family’s home while Owen underwent chemotherapy treatment. They left twice, but only to stay a few days just down the road from the hospital at Ronald McDonald House Fort Worth. After completing the intense AML treatment protocol, Owen was discharged from Cook Children’s in May 2014 and returned home for the first time in months.

In a matter of days, Allison and Joseph went from knowing little to nothing about AML to becoming experts on the topic. They credit their relationships with other cancer families at Cook Children’s for learning the ropes. Allison recalls that Cook Children’s chaplains would often stop by for a visit with Owen, and she would sometimes take that opportunity to step out and visit with other moms on the unit.

“Talk to the other cancer families if you're on the cancer floor,” Allison said about the advice she gives to families facing a new cancer diagnosis. “Those people were our family. We still send Christmas cards every year to the families that were inpatient while we were inpatient. They were such a support system. They share in something that nobody else on the outside would ever understand. Meet, find and talk to other cancer moms and cancer families that are going through the same thing.”

Today, 9-year-old Owen is cancer free and loving life, despite having a few lingering issues as a result of the stroke, like weakness on the right side of his body for which he continues weekly therapy. The stroke also led to daily seizures. In 2018, Owen became the first patient at Cook Children’s to undergo a trailblazing endoscopic surgery that disconnects part of his brain to stop seizures.

Even with these challenges, Allison says her son is a happy, easy-going kid looking forward to a future full of possibilities. If Owen has anything to do with it, that future will include lots of golfing and fishing, scoring a few goals for his soccer team, and cheering on Dude Perfect as they attempt their epic stunts.

About AML

Acute myeloid leukemia (AML) is a fast-growing blood cancer that originates in the bone marrow where blood cells are made. It starts with the abnormal growth of cells that form white blood cells, red blood cells or platelets. The abnormal cells end up crowding out normal blood cells, which can lead to infection, anemia and a tendency to bleed easily.

Of the more than 10,000 children diagnosed with cancer each year, nearly one in three cases are a form of leukemia. There are two main types of acute leukemia, with AML being the least common one in children.

Symptoms may be hard to spot. In Owen Turner's case, his symptoms began with bumps on the top of his head and escalated quickly resulting in a stroke. 

Other symptoms may include:

●     Easily tires, is weak or dizzy

●     Pale or ashen skin

●     Shortness of breath, trouble breathing or an unexplained cough

●     A fever or infection that doesn't get better

●     Bleeds or bruises easily, the gums may bleed often when brushing the teeth, recurrent nosebleeds

●     Continual bone or joint pain

●     A swollen belly

●     Swollen lymph nodes on the sides of the neck, underarms or groin area

●     Headaches, seizures, vomiting

●    Non-itchy rashes caused by bleeding under the skin

Acute myeloid leukemia is aggressive. It can move into other parts of the body and, if left untreated, can lead to death within six months or less.

If your child experiences any of the above symptoms, it is wise to talk with your pediatrician about them.

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.”

Joann Sanders, M.D., chief quality officer, and Matthew Carroll, M.D., associate chief quality officer, credit Cook Children’s employees with top rankings in the U.S. News & World Report’s Best Children’s Hospital list for 2022-2023. Cook Children’s Health Care System ranked in six specialties, a large increase from two specialties last year. Among 284 children’s hospitals in the country, only 90 ranked in at least one of the pediatric specialties evaluated. The report, released on June 14, used clinical data to measure patient safety, infection prevention and adequacy of nurse staffing.

“For more than 100 years, Cook Children’s has been committed to providing the best quality medical care for children. The U.S. News and World Report rankings further validate the tireless dedication of our staff to fulfill our Promise,” said Rick W. Merrill, President and CEO of Cook Children’s Health Care System. “As we look toward the future, with the opening of our new hospital in Prosper, Texas, later this year, we are excited to bring our world-class pediatric care to even more children and families.” 

Dr. Sanders and Dr. Carroll said the top rankings are a testament to the people who work at the hospital and consistently deliver excellent quality care.

“Everyone in the organization has an impact on the amazing care we deliver to our patients and is part of our organization's success in U.S. News & World Report,” Dr. Carroll said. “The high-quality care that our physicians and staff provide every day not only positively impacts the lives of the patients and families we serve but is also reflected in awards such as this.”

Dr. Sanders echoed those sentiments and said the rankings are a huge accomplishment for Cook Children’s.

“It validates what we all have known – that we are a top-tier organization,” Dr. Sanders said.

The report uses clinical data to measure patient safety, infection prevention and adequacy of nurse staffing. The following six Cook Children’s specialties were named among the top programs:

• Pediatric Neurology and Neurosurgery - #29 in the nation
• Pediatric Diabetes and Endocrinology - #38 in the nation
• Pediatric Orthopedics - #41 in the nation
• Pediatric Pulmonology and Lung Surgery - #43 in the nation
• Pediatric Cardiology and Heart Surgery - #48 in the nation
• Pediatric Cancer - #50 in the nation

“The rankings are an incredibly complex process with a large amount of information gathered in two months,” Dr. Carroll said. “It was a great team effort from IT, Quality and the specialties involved.”

Raising the Bar

During the past two years, Dr. Carroll took a detailed look at the survey and partnered with each specialty to discover opportunities for improvement. 

“We didn’t do it just to check off the boxes for U.S. News & World Report,” Dr. Sanders said. “It was all about where it made sense to make changes and ultimately improve patient care.”

One improvement in Endocrinology was the development of a quality metric dashboard that shows how physicians are performing relative to peers on 10 to 15 measures. Dr. Paul Thornton shares the dashboard with the group which highlights roadblocks and successes. As a result of that project, dashboards will continue to be built for each specialty.

Scott Perry, M.D., head of Neurosciences at the Jane and John Justin Neurosciences Center, has worked at Cook Children’s for 13 years, consistently building innovative services contributing to rankings in the U.S. News & World Report. The Center is best known for its patient-centered care model focused on providing easily accessible, comprehensive care. Programs of excellence in epilepsy and movement disorders have been the foundation of their success, in addition to an active research program with multiple NIH grants. The group has grown to serve 13 locations in Texas including full-time clinics in Lubbock and Amarillo.

“We continue to expand the subspecialty neurosciences services at Cook Children’s, for example, our genetic epilepsy and movement disorders programs, offering not only the best in diagnostics and therapeutics but also several research trials offering novel therapies that otherwise would not be available to our patients,” Dr. Perry said. 

After looking at the survey analysis, Sheralyn Hartline,  formerly the RN, NICU/ECMO director and the current AVP of Nursing and Patient Care at Prosper, along with Pharmacy and IT departments at Cook Children's realized the need for a vaccine program geared toward parents who had not received their TDAP and flu shots. This is extremely important for the NICU population due to their immature immune systems.

“The database coordinator in NICU created a system to identify very low birth weight infants whose parents did not receive their TDAP vaccine,” Sheralyn said. “Pharmacy talked to parents to establish who would be eligible and after the program started, we were able to branch out and offer the flu vaccine. It has been a collaborative effort and Pharmacy keeps us afloat.”  

“The employees in these specialties have been very engaged and are the ones committed to making changes,” Dr. Carroll said. “This is part one of a long journey and we will build on this year’s successes moving forward. The next step is to complete an in-depth analysis of the survey and review it with the different medical directors, working with them to identify areas the organization can tackle together as we continue to improve our patients’ care.”

Cook Children’s Health Care System has successfully achieved six rankings in the U.S. News and World Report’s Best Children’s Hospital list for 2022-2023. This is an impressive and exciting jump from 2021 when Cook Children’s ranked nationally in two specialty categories.

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 six Cook Children’s specialties were named among the top programs:

• Pediatric Neurology and Neurosurgery - #29 in the nation
• Pediatric Diabetes and Endocrinology - #38 in the nation
• Pediatric Orthopedics - #41 in the nation
• Pediatric Pulmonology and Lung Surgery - #43 in the nation
• Pediatric Cardiology and Heart Surgery - #48 in the nation
• Pediatric Cancer - #50 in the nation

“For more than 100 years, Cook Children’s has been committed to providing the best quality medical care for children. The U.S. News and World Report rankings further validate the tireless dedication of our staff to fulfill our Promise,” said Rick W. Merrill, President and CEO of Cook Children’s Health Care System. “As we look toward the future, with the opening of our new hospital in Prosper, Texas, later this year, we are excited to bring our world-class pediatric care to even more children and families.”

Out of the six specialties ranked on the Best Children’s Hospital list, all but one are currently operating at Cook Children’s Pediatric Specialties – Prosper. Neurology, endocrinology, pulmonology, cardiology and pediatric cancer services are all available for new patient appointments. 

“As a leukemia survivor and pediatric oncology nurse here at Cook Children’s, this fundraiser is close to my heart, and I feel that I have been given the opportunity of a lifetime to help others,” Harris said.

The Man & Woman of the Year program is a philanthropic competition among a group of motivated and dedicated individuals in communities across the United States driven to support blood cancer research.

To participate, candidates form fundraising teams and compete in honor of two local children who are blood cancer survivors. The man and woman who raise the most funds during the campaign will be awarded the title of Man or Woman of the Year.

Harris is one of 11 nominees from Tarrant County, and her 10-week campaign runs through June 10, 2022. To support Harris and donate to the cause, visit her campaign website.

In August 1993, when she was 4 years old, Harris was diagnosed with Acute Lymphoblastic Leukemia. After three years of intense treatment at Cook Children’s, she returned home cancer-free and ready to pursue a new dream: to become a nurse.

She went on to graduate from Tarleton State University in 2012 with a Bachelor of Science in Nursing and became a registered nurse. She now serves as a nurse manager of the same unit at Cook Children’s that treated her when she was a child.

Harris says she is excited to participate in the fundraising competition because she hopes to benefit families who are going through experiences similar to those her family faced.

“I love the Leukemia & Lymphoma Society’s mission because the organization is not solely dedicated to finding new drugs,” she said. “They support families throughout their journeys in many different ways.”

The funds raised through the Man & Woman of the Year are used for continuing research of lifesaving therapies, educating and supporting patients and families, and driving policies that increase the development of and access to new treatments.

Go here to Harris's campaign website to learn more.

#WeAreCookChildrens

That was the case for Zander Hunt, the 11-year-old son of Aaron and Emily Hunt of Amarillo, Texas. Diagnosed with kidney cancer at age 7, Zander spent years undergoing grueling chemotherapy and radiation treatments, but the cancer continued to spread. By January 2020, it was classified as stage four. Zander’s prognosis was grim.

The family made a last-ditch effort with an aggressive chemotherapy treatment which shrank the tumors, but Zander needed surgery to completely remove them. The procedure required specialized care. That’s when the family turned to Cook Children’s Medical Center and found Marty Knott, D.O., Ph.D., pediatric surgeon, and Kelly Vallance, M.D., MPH, pediatric oncologist.

Dr. Knott performed surgery to remove a number of tumors from Zander’s body.

“The care we received at Cook Children’s was a breath of needed fresh air,” Aaron said. “We didn’t know what to expect after our first hospital experience but the attention and expertise that Zander and our family received was superior. We will be forever grateful!”

Dr. Vallance pledged to the Hunts to do everything in her power to find a drug treatment for Zander’s cancer. Finally, the family had a glimmer of hope.

“I remember feeling almost desperate for anything,” Emily said. “At that point you’re tired. The chemo and radiation have taken every bit of life out of them at some point. They’re always recovering from treatment. You just see your kid for this prolonged period of time withering away. I was desperate for anything that could help him without hurting him.”

Finding a treatment match proved to be difficult. Turns out a medication for Zander’s specific cancer markers and tumors does not exist. Dr. Vallance presented the family with one last option — try a medication that is commercially available for adults, but not approved for children or his specific type of cancer. Because of this, getting the expensive treatment covered by insurance was a long shot. The hospital would need to be granted compassionate use to trial this drug with Zander.

Dr. Vallance turned to Cook Children’s research pharmacy team, led by Micha Koentz, PharmD, and they went to work to obtain compassionate use approval.

Koentz and her small team, which includes another pharmacist and a pharmacy administrator, are responsible for dispensing investigational drugs being used in clinical trials and research at Cook Children’s. There are currently more than 100 medication studies open at the medical center. The research pharmacy team also handles any requests for compassionate use medications and works through a gauntlet of regulatory bodies for approval to use them. These drugs are either still being studied by drug companies but not yet on the market, or are available but approved for adults only, like in Zander’s case. Sometimes medication is available for children but not covered by insurance and is far too costly for most.

Once a request by a physician is made, one of the research pharmacists contacts the drug company to get their buy-in. Then, a request must be made to the Food and Drug Administration (FDA). After FDA approval, the request is sent to Cook Children’s internal review board for final approval. If all agree that the benefit outweighs the risks for the child, the drug can then be issued by the drug company, which they provide free-of-charge to the hospital. That means it’s also provided at no cost to the patient.

“It truly means access to a drug that is otherwise not available or affordable,” Koentz said. “This can buy the patient and family more time.”

Managing compassionate use requests — contacting drug companies, pleading the patient’s case, writing treatment plans and working with regulatory bodies — has become a personal passion for all three members of the research pharmacy team. The process can take anywhere from a few days to a few weeks, but the small but efficient team has streamlined the process to a point where they can usually obtain approval from all within two weeks or less. They know that when a child is facing the end of their life, time is of the essence.

The compassionate use request for Zander was approved. In September, he will have been using the medication for two years. All the while his scans have been clear. There is no sign of cancer advancing in his body. Best of all, he has gained back his childhood.

“He goes to school, plays on a club soccer team, has friends and a normal life,” Emily said. “This medication is working for him. We've gotten two years that we didn't know we would get, and they've been two years with clear health, like he was a healthy little boy. We're so thankful to all of the people we've worked with at Cook Children’s, because it changed our entire experience with kid cancer and with medical treatment.”

Sometimes a patient using a compassionate use drug lives another few weeks or months. Even so, there is comfort for the family in knowing every treatment option was exhausted, Koentz explained. Other times, the medication adds years to a patient’s life.

“It truly is the last option,” Koentz said. “Under compassionate use, we’re looking at anything we can do to really give the patient one last try at something that might work.”

In addition to one last try, these drugs give kids the opportunity to go home.

“A lot of our drugs are oral agents,” Koentz said. “It’s a pill that you swallow by mouth. So if you are at the end of your life, you really don’t want to spend that time in a hospital hooked to IVs. This really is a nice way for patients to go home, take an oral drug and hopefully add some weeks, months or years to their life.”

Koentz has issued compassionate use requests since her arrival at Cook Children’s research pharmacy in 2014. She said back then they would do one here and there. Because of her dedicated team, they now request and receive approval for multiple a year. In 2020 and 2021, nine compassionate use requests were approved. This year, the research pharmacy team is already working on their sixth request.

Pediatric cancer patients have fewer options for treatment than adults. While just as devastating, when compared to the prevalence of adult cancers, pediatric cancers are rare. So drug companies tend to focus on the research and development of adult cancer medications because the market for those is greater. That’s why compassionate use medications are critical in pediatric cancer care.

It’s also why Koentz went into research pharmacology. In pharmacy school all she learned about were drugs that are FDA-approved and commercially available at a pharmacy.

“Then I started working in pediatric oncology and quickly learned that some of our patients have to get research drugs because there’s just not a whole lot of options out there if they progress or if they never have their disease depressed,” Koentz said. “They really have to try other options. A lot of times our pediatric cancer patients will go to clinical trials. So I got really into clinical trials because I have a passion to further advance pediatric oncology. I want more options for our kiddos.”

As for Zander and his family, including his five brothers and sisters, they’re making the most of the time they’ve been given for more moments, more smiles, more laughter and more memories, and they’re relishing the normalcy.

“Zander told me the other day, he doesn't remember what it's like to be sick anymore,” Emily said. “I thought that was really impactful. He said he can remember being in the hospital and all of the doctors and the surgeries, but he can't remember what it feels like to be sick anymore.”

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.

Skylar Jones, 15, is the first patient to undergo CAR T-cell therapy at Cook Children’s. She was just 9 years old in 2014 when she was diagnosed with B-ALL. Despite undergoing intense chemotherapy, Skylar’s cancer relapsed in 2017 and again in March 2021.

CAR T-cell therapy was approved by the Food and Drug Administration (FDA) for use in refractory and relapsed B-ALL in 2017. Cook Children’s began offering the treatment for those who qualify in November 2020. For Skylar, the timing was perfect and meant she would not have to travel outside of Fort Worth and away from her long-time physicians at Cook Children’s to receive this potentially life-saving treatment.

“Had she relapsed six months earlier, we would have had to go out of town for this,” said Deby Jones, Skylar’s mother. “So for Cook Children’s to have this now and for families to not have to move to get this treatment for their kid, I mean, there’s tons of families that will benefit from this.”

Skylar’s necessary but difficult chemotherapy treatments wreaked havoc on her body. Mouth sores, headaches and rashes were common side effects. An infection required part of her lung to be removed, and the impact of chemotherapy on her bones and joints made it impossible for her to play basketball, her favorite sport.

When Skylar relapsed a second time in March, it was clear that chemotherapy was no longer the most effective course of treatment in her case. Her cancer required a different approach. This made her a good candidate for CAR T-cell therapy.

“CAR T-cell therapy is a treatment option for children with refractory B-ALL, meaning they haven’t responded to initial treatment, or kids whose cancer has relapsed,” said Holly Pacenta, M.D., a hematologist/oncologist with Cook Children’s Cellular Immunotherapy Program.

In this cell-based immunotherapy, the patient’s own T-cells, which help the body fight infection, are harvested from their blood and sent to a lab where they are reprogrammed into CAR T-cells to target their leukemia. The CAR T-cells are then reintroduced into the patient’s blood stream. From start to reinfusion, the process takes about four weeks.

The therapy begins with a procedure called leukapheresis where the healthy T-cells are removed from the patient’s blood. This takes about four to six hours and the patient is able to go home from the hospital the same day. Once the lab receives the cells, it takes a few weeks to reprogram them into CAR T-cells. Just before the CAR T-cells are reintroduced, the patient undergoes a short round of chemotherapy to lower the number of other T-cells in the body. This gives the CAR T-cells a better chance to activate inside the body to kill cancer cells. After chemotherapy, the patient returns to the hospital to be infused with their new CAR T-cells and is able to go home the same day.

Unlike chemotherapy and radiation, which affects the fast growing cells in the body, this treatment is a targeted approach that kills only the B-cells. The duration of treatment is shorter, too.

“B-ALL cells have specific markers that aren’t located on many other cells in the body, which is the part about it that’s unique,” Dr. Pacenta said. “The reason this has been so successful is because we are able to target one marker on leukemia cells to fight the disease.”

The remission rate after CAR T-cell therapy is 80%.

“Every patient is different, but we know that, in some children, this can be a long-term cure, meaning they don’t need to receive any additional treatment,” Dr. Pacenta said. “Some research studies have found that the CAR T-cells will persist in a patient’s body for as long as three and a half years, but it’s likely that the cells will be around for much longer.”

For Skylar, CAR T-cell therapy was as different from chemotherapy as night and day. She was fortunate to not experience any of the side effects associated with the therapy.

The side effects of CAR T-cell therapy include allergic reaction during and immediately following the infusion. In the weeks after, patients are closely monitored for neurotoxicity, as well as cytokine release syndrome, where the immune system becomes overactive due to the multiplying CAR T-cells releasing large amounts of chemicals called cytokines into the blood. These side effects can be very severe, with some patients requiring admission to the intensive care unit.

Now three months post infusion and Skylar's cancer is in remission. She will undergo more testing at six months post infusion, which will give her a better idea of her potential for long-term remission.

As for the possible impact of this type of cell-based immunotherapy on cancer, doctors are hopeful it could one day replace traditional treatments.

“I think there may be a day in the future where cellular therapy does replace chemotherapy, surgery and radiation for people with cancer,” Dr. Pacenta said. “But I think we are still a ways off. This therapy has been very successful initially but we still have a lot of work to do.”

So before starting chemo, Zechariah underwent a quick surgical procedure as part of a nationwide research study aimed at saving the fertility of children with cancer. He’s just 6 years old, but his doctors and parents wanted to try to safeguard Zechariah’s chance at biological fatherhood some day.

That surgery on June 6 made Zechariah the first research participant at Cook Children’s to have testicular tissue removed in an experimental effort to help young boys who have cancer. Gerald V. and Whittany Silva say they’re grateful for the option to freeze and store their son’s tissue for possible use down the road as fertility technology advances. In other words: The tissue is there, untainted by chemo, if Zechariah needs it years from now to make sperm.

“We talked a little about it with him, just so he understood it was to help him in the long run,” Gerald said. “We explained to him that we did it for him. When he’s older and an adult, he’ll understand.”

Zechariah completed four cycles of chemotherapy this summer. Family and nurses joined in the celebration Aug. 23 as he rang the bell at Cook Children’s to celebrate the end of his treatment. This story profiles Zechariah in September, which is Childhood Cancer Awareness Month, to showcase the expanding scope of oncofertility resources at Cook Children’s.

For young girls with cancer, the science is further along than for boys. A 4-year-old girl with a kidney tumor had an ovary removed and frozen – a technique known as cryopreservation -- last October. She was the first female patient at Cook Children’s to undergo this procedure that is clinically approved for girls. Zechariah was the first male participant eight months later, and both surgeries were performed by Blake Palmer, M.D., medical director for Cook Children’s Urology.

The intersection of oncology and fertility comes into clearer focus with background on a few basic points:

• Infertility can be an unintended and unfortunate result of chemotherapy and/or radiation, as these treatments kill healthy cells in the process of attempting to kill cancer cells. Sometimes the reproductive organs don’t recover, resulting in permanent loss.
• Teenage boys are able to preserve sperm through a semen sample, and the eggs of teenage girls can be removed before beginning cancer treatment. But those options aren’t available prior to puberty. That’s because the precursor cells in boys the same age as Zechariah cannot make sperm yet.
• Improved treatment practices have boosted the five-year survival rate for children with cancer to 84%, according to the American Cancer Society. That statistic raises the stakes when it comes to their future reproductive health.

“We know from our adult survivors of pediatric cancers that infertility significantly impacts their quality of life,” said Toni Leavitt, fertility program coordinator at Cook Children’s. She provides information to patients and their parents. “For many families, fertility is a primary concern at diagnosis, and it is important for us to offer options to preserve fertility prior to initiating treatment.”

Fertility wasn’t on the Silvas’ radar when they brought Zechariah to Cook Children’s in May on a referral from their pediatrician back home in Amarillo. Zechariah had been struggling for months with muscle weakness and nerve pain as a result of an autoimmune disorder called Guillain-Barré syndrome. He was also battling a chronic neurological disorder closely related to the Guillain-Barré. Tests run at Cook Children’s found the cause of a swollen lymph node in his neck: Hodgkin's lymphoma, a type of cancer that develops in the white blood cells. Chemo had to start right away.

Whittany remembers feeling overwhelmed by the amount of new information coming at her and Gerald. Zechariah’s oncologist, Ashraf Mohamed, M.D., was the first to bring up the topic of cryopreservation. Dr. Mohamed considered Zechariah a great candidate for the research study, Whittany said.

Leavitt then told the Silvas that Zechariah was eligible because the high dose and type of chemotherapy in his treatment protocol put him at an elevated risk for infertility. If his parents consented, Leavitt told them, a small piece from one of Zechariah’s testicles could be removed, frozen and stored in hopes of producing sperm when he reaches adulthood.

“She explained it a couple of different times,” Whittany recalled. “The thing that was making me a little bit more worried was how are we going to explain it to him? Would the incision hurt? I thought Zechariah might have questions that I wouldn’t have the answer to.”

The Silvas’ decision to say “yes” was influenced by the fact that the operation would take place while Zechariah was already sedated for placement of his chemo port. He wouldn’t have to be anesthetized twice. Leavitt made it clear that cryopreservation for prepubescent boys is an experimental and elective procedure. 

“She was great, very reassuring of the studies and the process,” Gerald said. “I don’t think we needed a whole lot of convincing, we just needed to discuss it as parents.” 

The next day, Dr. Palmer made a tiny incision in Zechariah’s scrotum and harvested about 5 millimeters of testicular tissue, which was frozen and delivered by courier to the University of Pittsburgh Medical Center, the lead site of the research study. The procedure involved low risk of bleeding, infection or injury, Dr. Palmer said. 

Zechariah is one of more than 400 research participants in the collaborative study, which involves a dozen institutions across the country. Most of Zechariah’s specimen has been set aside for his own use, Dr. Palmer said. But a fraction of the specimen goes toward finding ways to efficiently and safely mature and utilize the frozen-thawed tissue via in vitro, grafting or other methods. Animals in the lab have given birth in experiments using harvested testicular tissue.

“This is going to happen, I just don’t know exactly when,” he said. “This could be two years from now. It could be five years from now. But for a kid who’s 6, like Zechariah, we have a lot of confidence that this is something that is going to be readily available for him when he’s ready.”

Dr. Palmer called Zechariah’s procedure a cutting-edge step that brings new hope for young boys with cancer. He looks forward to the day when the guaranteed ability to restore fertility will take away a worrisome side effect of cancer treatment.

Dr. Palmer is passionate, too, about advocating to defray the cost of fertility preservation (currently, it’s not covered by insurance). He gives credit to his Cook Children’s colleagues, Leavitt, clinical research coordinator Kristy Reyes, and Dr. Karen Albritton, M.D., medical director for the Adolescent and Young Adult Program, of the Hematology and Oncology Center whom are all involved with the research study.

Not all children and teens with cancer run the risk of permanent fertility loss. But for those who face that prospect, the specialty of oncofertility steps in right after diagnosis. Leavitt makes it her goal to educate and support, not attempt to persuade families into any particular choice.

She starts by helping each family understand the projected impact of chemotherapy, radiation or cancer surgery on the patient’s long-term fertility outlook. Each consultation takes into account whether the patient has already gone through puberty, a fact that determines which measures are available. The consent process is extensive; the parents of some research participants sign on, she said, and some decline.

“Your child could become a parent someday no matter what, if they want to be. We talk about adoption, and fostering and being a stepparent -- that there are many ways to become a parent,” Leavitt said. Cryopreservation is only one option, “and we want to keep this door open for our patients if that is their wish.”

Chemotherapy made Zechariah tired and caused hair loss, mouth sores and fever, his mom said. Because there’s also a strong possibility of damage to testicular cells, his parents say they’re glad that a fragment of tissue was saved so that Zechariah as an adult can decide if he wants to pursue biological paternity.

“Zechariah is super loving and caring, and I didn’t want us to take that opportunity away from him,” Whittany said. The gist of the conversation so far? She told her young son: “Later in life when you’re way older, you’ll probably want to have your own babies. You’re super smart and you know a lot of things, but it’s not the time now for you to know everything about it.’” 

Zechariah’s parents are counting on oncofertility technology to keep improving over the next 15 years, by the time their son turns 21. But for now, he’s a first-grader busy with puzzles, chess and playing with his little sister, Andersynn. His latest PET scan was clear of tumors.

“He has come such a long way. He’s got so much fight,” Gerald said. “He feels great, and I think he’s in a good place.”

Due to current COVID-19 restrictions, only one parent or caregiver can attend appointments with patients. So each Tuesday, Aiden and his mother, Lori, attend appointments at Cook Children's where he receives chemotherapy. During his treatments, Aiden's father, Chuck, waits patiently outside of the building until Aiden is taken into a room with a window.

Once Aiden can see outside, Chuck hosts a one-man, music-free dance party for Aiden (and anyone else who happens to see him). The two are usually on the phone, talking to each other at the time. Aiden will call out dance moves for Chuck to do, and he even does a little dancing himself. Chuck says he does it to lift Aiden's spirits.

"The restrictions during the pandemic made me feel helpless. And the only way I knew to cope was to somehow be there during his treatments," said Chuck. "When he was able to come to the window, it just came natural to me to wave and carry on, which turned into me dancing!  I love knowing that it makes him giggle and smile, and let’s him know that his struggle is my struggle. I would never want him to think that he is going through this without his dad."

"I think it’s tough to break up a close knit family of four in these days, only allowing one parent to be present during Aiden’s clinic treatments and equally hard to not have his big brother Camden by his side too!" said Lori. "The population of kids present are all immunocompromised, so it makes sense, just a tough pill to swallow! I absolutely love listening to his giggles & watching him belly laugh at Chuck’s fancy dance moves. He can be having a terrible day, which transfers towards us some times too, and it’s instantly better once he sees his dad shake his booty. Aiden’s smile is contagious and can light up a room, even behind his mask."

The Yielding family is hosting a blood drive on Saturday, Oct. 3 in Fort Worth, Texas. Click here to sign up.

“His pediatrician said he didn’t look good, and she recommended we drive to the emergency room at the downtown location,” Isabel said. “Something wasn’t right with this blood work.”

Isabel, Ignacio and Matt arrived at Cook Children’s on Feb. 13, 2020. After more testing, Matt was admitted to the oncology unit. The on-call physician gave the family the devastating diagnosis of leukemia.

“She said he had probably been in some bone pain for a while, and we just didn’t know. She went on to tell us that Matt most likely had leukemia, but we didn’t know what kind yet,” Isabel said. “He had a bone marrow biopsy the next morning, and we found out which type he had. It all happened so fast.”

Matt received the formal diagnosis of acute lymphoblastic leukemia (ALL) on Feb. 14, five days after his fourth birthday.

“I remember we spent Valentine’s Day in the hospital cafeteria together after Matt was confirmed to have ALL and had his port placed. None of this really sank in until much later,” Ignacio said. “I still remember asking his doctor, ‘Are you sure? Are you sure this is what it is?’, and they were more than sure.”

Matt’s diagnosis already came with uncertainty and a heightened awareness for his health, but COVID-19 only heightened his parents’ worries and created more isolation.

“It’s been terrifying to go through this at all, because his ability to fight any kind of infection is depleted and his immune system is so vulnerable,” Ignacio said. “Now you have this virus that limits everyone from being out and you’re scared that you might come into contact with someone who has it, then you give Matt a hug and now he may have it too.”

Quarantine takes on a new meaning for oncology patients and their families. COVID-19 has forced parents to make difficult decisions for the safety of their families, including isolation from other patient families.

“A lot of other families that we’ve talked to who are also going through this diagnosis say they are use to the isolation, but when you add the extent of the COVID isolation to this it becomes very difficult to handle,” Ignacio said. “Things don’t seem to get any easier through this pandemic. It’s just a matter of waiting for this to pass.”

A sense of unpredictability is anticipated with a cancer diagnosis, but Ignacio and Isabel hoped for a community within the oncology floor. While they do have that with the nurses, child life specialists and staff members, they yearn for relationships with other parents who have similar experiences.

“We expected to have that camaraderie with other parents on the unit, but COVID has just made it to where we can only get that connection through social media or Zoom,” Ignacio said. “You just don’t have that right now. Matt got this diagnosis at the worst possible time with COVID.”

While many have adjusted to their new normal during the pandemic, Matt’s treatment regimen has prolonged the adjustment as he is on week 14 of 120 at the time of this article.

“Everything that we do now is trying to find that sense of normalcy for our family,” Ignacio said. “Financially finding that balance, scheduling appointments for Matt and making sure our other kids still have a life outside of Matt’s cancer diagnosis. We can’t just stop living.”

Cancer amidst COVID-19 has given the Rodriguezes a renewed outlook on placing importance on their family. Although they may feel isolated from their community, the time they spend together as a family is now more valuable than ever.

“We enjoy every moment we have with our kids. I hate COVID, but I’m thankful that I’ve been able to have them all home with me,” Isabel said. “We realize every moment that Matt is okay is important, and we’re amazed at everything he’s still able to do. We treasure those moments more than before.”

Their journeys differ in many ways. Emily is a two-time cancer survivor who says she essentially ‘grew up’ at Cook Children’s, while Jason was diagnosed as a young adult. But both say they were so inspired by their experiences at Cook Children’s, they decided to return to care for patients and families who resemble their own stories.

For Jason, becoming a nurse was not even on his radar. At 20 years old, he was studying to become an opera singer at Oklahoma City University. At first, he thought the shoulder pain he was experiencing was the result of a boxing class he was in. Then the pain moved to his hips. After several visits to different doctors, Jason finally had bloodwork done.

“They discovered that my white blood cell count was crazy high,” he said. “They’re supposed to be about 6,000 and I think mine was 68,000 at the time of diagnosis.”

He was advised to go to Cook Children’s to see Karen Albritton, M.D., who specializes in teenage and young adult cancer. Luckily, Jason was already familiar with Cook Children’s since he grew up in Fort Worth.

“Finding out that the best place you can go is in your hometown was just serendipitous,” he said.

It was at Cook Children’s that Jason received the diagnosis of biphenotypic leukemia, a mixture of both acute myeloid leukemia (AML) and acute lymphoblastic leukemia (ALL). He spent a total of three months receiving chemotherapy and radiation for his cancer. During that time, genetic testing revealed he was highly likely to relapse if he didn’t receive a bone marrow transplant. In another twist of fate, he learned his only brother was a perfect match. Thanks to his sibling’s willingness to become a donor, Jason received the bone marrow transplant that would ultimately make him cancer-free on May 8, 2012.

“I ended up having my transplant on my 21^st birthday,” said Jason. “It's something I always joke about because whatever day you get your transplant is supposed to be celebrated as your second birthday, but I still only get one.”

To make his 21^st birthday even sweeter, Dr. Albritton arranged for three singers from the Fort Worth Opera to come visit him in the hospital.

“She really went above and beyond, and really, it was a very, very special day,” he said.

With the intense treatments Jason had to endure to fight the cancer, he wasn’t sure he’d ever be able to sing again. It had been a dream of his to become a professional performer since early childhood, but he feared his vocal chords had been permanently affected by the medication. But after beating cancer, Jason went on to finish his degree and even received a master’s degree in opera at the San Francisco Conservatory of Music.

“While I was doing all of that, it just felt like something was missing. I had thought about becoming a nurse when I was in the hospital,” Jason explained. “So I went back to my other love and honestly, I've never been happier than I am right now as a nurse. And especially at Cook Children’s, being able to work at the hospital with some of the people who treated me, and being there for these kids the way the nurses were there for me. I've gone home crying happy tears multiple days because I just feel so lucky.”

He says he loved his doctors, but the nurses held a special place in his heart.

“The nurses are the ones who are with the patients most of the time, and it was the nurses who really took care of me when I was at my sickest,” said Jason, his voice cracking as he spoke. “When I was in the most pain, when I couldn't stand or sit, they made my treatments bearable. I actually got to tell one of them that she specifically was the reason I wanted to become a nurse, because of all the ways that she helped me when I was a patient.”

Much like Jason, Emily says the nurses left a big impact on her, though she was much younger when she was diagnosed.

“I spent the majority of my childhood fighting cancer at Cook Children's,” said Emily. “In November of 2001, when I was almost 4 years old, I was diagnosed with Wilms' tumor. I had my kidney removed with my tumor. That was the size of a youth football.”

For Emily, the treatments lasted many years. She relapsed twice and had to have additional surgeries on her lungs and diaphragm, all followed by chemotherapy and radiation.

“Cook Children's quickly became my second home and somewhere that I felt safe,” she said. “I thought this was normal. Cook Children's made it feel fun, like something that I didn't have to do, but it was just part of life.”

She has especially fond memories of the Hematology/Oncology infusion center where she would receive treatments as an outpatient.

“The clinic was like a sanctuary for me. It was somewhere that I felt safe and where there was other kids like me who were bald and had ports and IV poles. That's where I would make most of my friends,” said Emily. “The clinic nurses always were a blast, playing music and giving out prizes. And Child Life made sure that even though we were there for hours, that it was always fun.”

In 2004, Emily received an autologous stem cell transplant and was deemed cancer free. She was on the mend until middle school when she developed a second cancer in her thyroid, likely due to heavy treatments from her first cancer. She had her thyroid removed and she was once again cancer free. She says even then, she knew she wanted to take care of children. When Emily went to college, she considered going to medical school to become a doctor, but quickly realized nursing was her calling.

“I love interacting with people. I love having relationships with people. I love being very hands on,” she said. “I felt like a doctor does all of those things wonderfully, but I felt like as a nurse, I could do all of those things more prevalently.”

She applied to Cook Children’s nurse residency program, but knew the competition would be strong. Out around 600 applicants, only about 5% would be accepted into the 12-month program.

“I knew that working at Cook Children's was a privilege and an honor, and I just had to tell myself that it may not happen right away, but I'll get there someday,” Emily said. “When I got the phone call from the manager of the nurse residency program, I think I cried as soon as she told me who she was. I didn't know if it was going to be a yes or no, but I still cried. As soon as she gave me the offer, I accepted it right on the spot. I think I said yes a hundred times. My mom was in the car with me and we both bawled after I hung up because it just came full circle.”

Both Emily and Jason say they want to work on the Hematology/Oncology floor where they were patients, but also understand the need to keep an open mind since placements for nurses at Cook Children’s are never guaranteed. After rotating through several departments for six months, Emily recently received her permanent placement. She’s officially a nurse in Hematology/Oncology.

“That kind of sealed the deal and it all made sense to me. The plan that God has for my life… all that I went through wasn't just something to go through. It had meaning,” Emily explained. “I always say that I wouldn't go back and change it, because it's allowed me so many opportunities to help other people and, now, children like me.”

Jason, who just began the program in July, is currently rotating through the Hematology/Oncology (H/O) floor. He hopes at the end of his six month rotation, he’ll be joining Emily.

“It's a very special population,” said Jason. “And the nurses just all care so much. I mean the whole staff, everyone cares so much about these kids and just work so hard for them and work so well together because of that common passion. And it's just really special to be here.”

In a recent essay published on NBC News’ website, Leah explained how face masks and forced social distance once marked her as 'cancer girl.'

“I spent a year of my life in rooms with filtered air, marked by rare trips to the outside world; even a decade later, a warm hug triggers a lingering anxiety in me,” she wrote in the essay. “That experience informs how I practice social distancing today.”

Leah was a 15-year-old athlete in her hometown of Aledo, Texas when she was diagnosed with Acute Myeloid Leukemia (AML). What followed included months of intense chemotherapy and a lot of time isolated on the hematology/oncology unit at Cook Children’s in Fort Worth.

“At the time, I was super angry because I mean, I've been through so much. I lost my dad to leukemia when I was 4 years old,” Leah explained over the phone from her home in Chicago. “I basically had the identical cancer to my father's. Now I’m starting chemotherapy, my hair’s falling out and this is high school, when you’re supposed to be having fun.”

Leah vividly remembers the day she got the news. She had just been rushed to the emergency department (ED) at Cook Children’s following an appointment with her pediatrician. Some unusual symptoms, such as fatigue and extreme bruising, led her doctor to run a blood test. He found her white blood cell counts to be exceptionally high.

In the ED, the attending physician told her “I have no doubt in my mind that you can make it through this, but this is going to be a battle.” Those words stuck with Leah for the next several months as she endured grueling treatments. She couldn’t leave her room without wearing a mask and visitors had to keep a safe distance from her. No touching was allowed.

It was tough, but after her last round of chemotherapy Leah was enrolled for a natural killer cell transplant. It was a clinical trial through St. Jude and it worked. She’s been cancer free ever since.

While being a cancer patient consumed nearly a year of her life, Leah didn’t let it slow her down.

“I didn't want to be held back. I wanted to graduate in my class and ultimately did,” she said.

She went on to attend the University of Texas as an undergrad and became a sports reporter. Today, she is pursuing a Master's of Science in journalism at the Medill School of Journalism at Northwestern University. She says she’s had a lot of time to process what she went through and has learned some things that are helping her get through the current pandemic.

“When I was in the hospital, I scheduled things around watching ‘That 70’s Show’ on TV, reading and doing schoolwork. I needed to keep myself occupied,” Leah said. “I'm basically doing the exact same thing now, just with less restrictions.”

And she says it is much easier to wear a mask now, then it was back then.

“We're in this moment where everybody's wearing a mask and they're cool and stylish, whereas mine were those paper Cook Children's disposable masks,” Leah explained. “There's a difference between wearing a mask when no one else is wearing one, and wearing one when everyone around you is wearing one. It’s a lot easier now.”

Leah hopes sharing her personal story will help others realize there are many out there who have been forced to wear a mask and social distance to protect their own health. And she says it’s something we should all do now in a sort of ‘golden rule’ kind of way.

“I've done it for my own protection. Now, I'm doing it for my own protection and for other people's protection.”

Her advice to all of us, including those fighting cancer now, is to take the precautions advised by doctors and scientists and to be patient.

“Just take everything day by day and see every day what you can do to lift your morale and make you happy,” she said. “If it's watching TV, learning a new craft or doodling in a journal, I don't care what it is, but try to find something that does occupy yourself and makes you happy.”

Gabriel was diagnosed with Acute myeloid leukemia (AML) and admitted to Cook Children's in November. Over the past six months, he has spent Thanksgiving, Christmas, New Year's and his birthday in the hospital. Now that he's accomplished his goal of walking an ULTRA marathon, Gabriel has set his sights on going home, which could happen at the end of the month. 

Miles in Motion is an incentivized walking program at Cook Children's, which rewards patients with gift cards for miles walked during treatment. The program is part of a larger initiative called Exercise is Medicine, which encourages patients throughout the hospital to stay active. 

As he completed the 26.2 miles, Joey’s physical therapists were the loudest and proudest cheerleaders in the Medical Center’s halls.

They are also the ones who helped create and implement the Exercise is Medicine initiative, which is aimed at increasing activity for oncology patients during their hospital stays. Miles in Motion, an incentivized walking program that’s a component of Exercise is Medicine, is used as a way to motivate patients to stay active, and is the program Joey, a pineoblastoma patient, took part in the last several months.

Unique to Cook Children’s, Exercise is Medicine ~ Miles in Motion is the brainchild of Lydia Robey, PT, DPT, a 10-year Cook Children’s employee and a graduate of Hardin-Simmons University. What began as an idea based on years of personal research about the importance of exercise for oncology patients, turned into a reality when Lydia and the PT staff teamed up with nurses, and other caregivers, to put ideas into action.

As part of the program, patients are able to win prizes as they complete certain distances (1-mile bracelet, 5-mile bracelet, 10-mile gift card).

Team Experience at its best

Lydia credits physical therapy's partnership with nursing, and creating a culture that embraces exercise in the oncology setting for their successes. “When we first started out, we never dreamed we would have a patient who would want to complete a marathon,” she said.

Empowered with Cook Children's 2020 system competency, which is the behavior of listening, Haleigh Schreck, PT, DPT, who has worked at Cook Children’s for four years and graduated from UNT Health Science Center, shared, “We all agree it’s hugely important to listen to our patients to make sure we are addressing their specific concerns and goals around exercise and other activities. We want to make sure we’re serving them the best way we can to meet their individual needs and not just following our agenda for what we think they need.”

“We want them to feel they are a part of the team,” she added. “We sincerely want them to enjoy their PT time as much as possible so they stay motivated and want to participate.”

The Miles in Motion program does just that, she insists, since it is not uncommon for bone marrow transplant and hematology/oncology patients to be in isolation or reverse isolation, and finding an outlet for exercise and interaction is vitally important.

Over the course of four admissions to the Bone Marrow Transplant unit on 5 Pavilion, each 2-3 weeks long, Joey was able to complete 26.2 miles, and he did so while being cheered on by his therapists, nurses, Child Life specialists and many others.

Joining Haleigh in caring for Joey, was Bryan Pyrc, PT, DPT, a Duke University graduate and Cook Children’s employee for the last four years. “We would ‘fight’ over who got to work with Joey because he’s just such a great kid,” Haleigh chuckled.

“It was such a privilege to work with Joey and his family,” Haleigh added. “They are truly the kindest and most positive people, who are so enjoyable and fun to be around. Joey truly taught us so much about what this program can really become. His hard work and accomplishments are the only reason we ever thought about a marathon even being a possible achievement through Miles in Motion. He has already been an example to other patients who have seen what he was able to do and they want to do the same.”

In fact, other patients are now riding a stationary bike to achieve their “miles,” and an additional patient has since completed his own marathon, and declares he was motivated by Joey’s story.

Haleigh adds: “It has been so inspiring to see how a positive attitude can really change your whole experience. We are all so proud of Joey, this program and what it’s become. It is just so cool to see all of this happening and to think of all the potential it has to really benefit so many patients.

“We have worked extremely hard and are thrilled that Exercise is Medicine is getting so much attention because it is going to be so awesome for our patients!”

And really… it already is totally awesome!

You can read Joey’s feature story here.

“Our Joey likes to move at his own pace,” said his mother Denise Belles.

Joey arrived at Cook Children’s in June of 2019. What his family thought were headaches from recent growth spurts and allergies turned out to be a rare form of cancer called pineoblastoma. A tumor was growing in his head and spinal fluid was building up in his brain.

“At the time, he was going to football camp and loved it. Then we did the CT scan and within days, we got the diagnosis that changed our lives forever,” said Denise.

On July 3, Cook Children’s neurosurgeon Daniel Hansen, M.D. removed Joey’s tumor. Luckily, Dr. Hansen was able to get the entire mass at once. From there, Joey began a strict regimen of proton radiation therapy. In November, he was admitted to Cook Children’s Bone Marrow Transplant Unit to begin stem cell chemotherapy.

“It was really hard on his body,” Denise said. “You deplete them (patients) of everything and start from scratch. But the doctor said to Joey ‘You don’t have a shot if you don’t have the right attitude.’ So we came up with a plan and no matter what, we were going to be positive about it.”

Part of the plan came together after a visit with a physical therapist. She asked Joey to start walking and told him that if he kept track of his progress, he could win a gift card once he hit 10 miles. The incentive is part of a new program at Cook Children’s called ‘Miles in Motion’ which encourages hematology/oncology patients to get moving.

“When I first got here, I was sick and I was moving pretty slow,” said Joey. “We started walking the first day, but I could only do two laps.”

Joey would log his walks on a piece of paper in his room. Soon, the papers began piling up as he started making multiple laps around the unit.

Physical therapist Lydia Robey was part of the team that came up with the idea for ‘Miles in Motion’ as part of a quality and safety initiative to get patients out of their beds and exercising.

“We were brainstorming how to increase activity for this particular group of patients and one of our dieticians pointed out that these kids were losing muscle mass at a far greater rate than they should,” said Robey. “Some of that was due to inactivity, as well as steroids and medications that cause muscle atrophy. We started reviewing the literature and the evidence just became overwhelming of how important exercise is.”

Robey said due to varying blood counts, patients are not always able to do resistance exercise. However, she says walking is always good.

“Everyone agrees that walking is safe, so we wanted to find a way to motivate and empower families and patients to start walking as part of their daily routine,” explained Robey.

Joey and his parents did just that. They committed to walking each day during his four separate hospital stays, which spanned between two and four weeks each.

“For about a week, I did two to four laps a day and then I started getting to 10 and I thought ‘Wow, this is good!’ and then I started doing 20,” Joey exclaimed.

Before he knew it, Joey was walking more than 30 laps at a time, a feat that seemed impossible when he first started.

“There really is a noticeable difference between the first time I saw him and how he is now,” said Haleigh Schreck, one of Joey’s physical therapists. “He walks every single day on his own, no matter what he’s going through treatment-wise. His drive and motivation are very impressive.”

Last week, Joey hit a milestone that not even his physical therapists thought was possible. Joey marked off his 26^th mile in the ‘Miles in Motion’ program, which is equivalent to walking an entire marathon. Walking a marathon was never even a goal for Joey or for the ‘Miles in Motion’ program, but as he got closer to mile 26, he knew he had to go for it.

“We were just like, we’re this close to getting a marathon and I decided ‘I’m gonna do this,’” said Joey.

On Thursday, Feb. 20, Joey made his final laps around the unit were he’d been walking for the past four months. This time, nurses, child life specialists and physical therapists lined the walls. They held up handmade signs and cheered him on. With just five laps to go, Joey took one step at a time, thanking his mom and dad for their support as they finished the journey together.

At the final lap, excitement built as the medical staff cheered his name. “Joey, Joey, Joey!” they chanted until breaking into a loud roar as Joey ran through the finish line, a paper streamer strung across the hallway.

He did it. Joey walked a marathon.

“It was awesome,” he said basking in the wonder of his achievement. “I could have never done it without my family, the whole team we have. Everyone has been so supportive of me. It’s just truly amazing what we have done, me and my parents.”

This wasn’t the first marathon completed by a member of the Belles family. Denise ran the New York marathon in 2010, but she said this one was much better.

“This one is more rewarding,” Denise said. “His training was harder. I definitely feel more fulfilled with his than mine. It means so much more.”

If that wasn’t enough, finishing a marathon wasn’t Joey’s only major accomplishment of the day. It was also his final day of chemo.

“In the beginning, I really thought this was going to be devastating,” said Joey. “But everyone has been helping me and pushing me. With them, I knew I could get through this and do it with power.”

While he did have a supportive family and medical team, Joey also did what his doctor advised and had the right mindset throughout his cancer journey.

“Joey has been an amazing patient to work with,” said Haleigh. “I can’t remember a time when he wasn’t just smiling and having the most positive attitude. He blew all of our expectations out of the water.”

“I’m so proud of him. It shows how if you have the right mindset then you can overcome anything,” his mom said.

With his treatment coming to an end, Joey and his family are making plans for the future. They’re downsizing to a smaller home so they can take more trips together. This summer, they hope to go to Italy.

“We’re a close-knit family. We just love being together, but this has brought us so much closer,” said Denise. “We don’t want to wait to do stuff, like travel, anymore. We enjoy each other and we don’t take anything for granted.”

The people who are already predisposed to developing the disease not only have a greater risk of developing cancer but also passing those genes on to their children.

Because of the advances in genetic testing and the importance of detection of those inherited cancer predispositions, Cook Children’s has started the Genetic-Oncology Clinic.

“We are trying to educate families and patients to increase awareness,” said Kelly Vallance, M.D., MPH. “But also to catch the cancer early, know the warning signs and find the way we are able to intervene and give these kids the normal lives they deserve. We do that by catching it early and teaching them what to look for.”

The Genetic-Oncology Clinic provides care and counseling to children and their families with a predisposition to cancer. The program, one of only a few in the country, is a collaboration among pediatric oncologists, geneticists and genetic counselors who provide education, guidance, therapy and routine cancer surveillance studies when indicated for children with a predisposition to cancer.

Patients range from newborns to adults through the Life After Cancer Program at Cook Children's.

"Research coming out now recommends that almost all pediatric solid tumor patients, as well as certain leukemia patients, have genetic testing done to see if they are at increased risk for developing secondary malignancies," said Heather Jernigan, a hematology and oncology clinic nurse and the nurse coordinator of Genetic-Oncology Clinic since it started a year and a half ago. "We know that almost every patient who gets cancer treatment is at risk for developing secondary malignancies. What we are learning is that with some patients with genetic predisposition syndrome that risk increases."

Becky Althaus was a catalyst to making the clinic a reality. Althaus worked with Mary Kukolich, M.D., medical director of Genetics, 40 years ago. The two of them worked together for about 19 years and Althaus said that’s where she was taught about genetics. She already owned a masters in nursing, and then became certified as a genetics counselor, earned her Ph.D. in genetics and a nurse practitioner. She went on to help start genetic-oncology programs in three different locations before coming full circle by joining Cook Children’s and working with Dr. Kukolich again.

“Between 10 to 14 percent of all pediatric cancers have a genetic component, so that means they have a genetic predisposition,” Althaus said. “Because of that we really need to be testing most children who are diagnosed with cancer.”

Genes are passed from parents to offspring and specify traits. Humans have approximately 20,000 genes. A mutation is a change in the DNA sequence that can occur in one of two types of genes:

• Somatic mutations occur in body and cells and are not passed on. They weren’t born with a predisposition.
• Germ line mutations occur in the eggs and sperm and can be passed on to offspring. This is a hereditary gene, meaning the child was born at risk for cancer at the moment of conception.

The Genetic-Oncology Clinic sees patients who are at risk for having cancer passed on to them genetically. That can mean their siblings or other family members could be at risk for developing the same cancer, or that the patients may eventually pass the gene on to their own children.

“A lot of times hearing the information for the first time is very difficult, surprising and causes a lot of fears for families, parents and patients,” Dr. Vallance said. “Especially our older cancer survivors who are being tested. To learn that they may be at risk for a second cancer and they may be at risk for passing along a gene that may predispose their children to developing cancer. At first it’s a lot of information to process. Over time everyone has been appreciative of knowing. I’ve not found anyone who says they wish they didn’t know. It gives them almost a sense of power that they know what to look for. They can educate themselves further. They can think seriously about not smoking, or eating healthier or taking better care of themselves. It empowers the families a little bit. It allows us to initiate early screenings and help them.”

Patients with predisposed cancers such as melanoma and leukemia are seen in the clinic. The clinic also allows for other specialties to be brought in during a patient's visit. For example, gastroenterology doctors and surgeons are brought in to help FAP (familial adenomatous polyposis) patients because they are at such and increased rate to develop colon cancer early in life before the age of 40.

The FAP patients are recommended to begin colonoscopies from ages 10 to 15, depending on symptoms. Jernigan works very closely with the GI staff through the clinic to schedule the patient's procedures.

“Certainly the care we provide each patient kind of expands to care for the whole family,” Vallance said. “A lot of our patients come to us because they’ve just been diagnosed with cancer. We’ve had many patients that may have just lost a parent to kidney cancer or colon cancer or multiple family members and now they find out they have this gene. Through our clinic we really want to be able to support the child and the family, provide social service support as needed and clinical therapy as we can. We can coordinate with the GI specialists and the surgeons and get these families the full care they need. I’m proud of our group that we really work hard together to make sure that anyone that may be affected in the family can get the support and the services they need too.”

Althaus says her heart breaks when she has to tell parents that their child has cancer, but she says the testing involved in the clinic can also bring comfort too.

For example, a parent dies at a young age from melanoma. A child can be tested to see if he or she is predisposed to the gene because of the high risk factor of developing the same cancer.

“That’s something the child might not have known about if we hadn’t done this testing,” Althaus said. “Now the child is getting closer surveillance from our staff for melanoma and pancreatic cancer in the future and if it’s detected, it is more likely to be in a treatable stage. This is truly life-saving work – genetic testing and counseling. It’s exciting to be a part of this. The impact can be for 50 or 70 years because we are seeing many of these patients at such an early age. If we can prevent cancer that has to be our ultimate goal for existence. It’s just so rewarding to think we might be able to prevent cancer or we might be able to detect cancer early for which a child is predisposed and save a life.”

Currently, the clinic is once a month and the genetics-oncology team sees about 20 patients a day. If a child does have a genetic form of cancer, other family members will then be looked at right away.

"I'm a nurse, but I'm a mom too and if the roles were reversed and somebody told me, 'Hey there's a chance your child might develop cancer I would want to know everything there is to know and I would want to make sure there's someone knowledgeable I could contact," Jernigan said. "I think our families trust us and that's why they are in treatment or surveillance. They trust the information we are giving them. It is the most up to date information we have. We are providing family-centered care. We are going to give that family our undivided attention while they are at the clinic. That says a lot about what we are able to offer kids and families at Cook Children's. I think it's important that we continue to do that for families in every way possible."

One way that Jernigan says the clinic could help patients is answering a simple question for parents whose child has cancer: Why?

"That's one of the amazing things that Becky brought to us that Dr. Vallance and I didn't even know about," Jernigan said. "If we are able to say, 'You know what? You have a genetic predisposition syndrome that was probably going to happen no matter what. Number one, we are able to give those families a reason for why their child developed cancer, but we are also able to test the rest of the family. That can give everyone peace of mind."

Althaus said those answers are what makes the clinic rewarding.

“It’s so rewarding to be able to give the parents the why and how it happened to begin with,” Althaus said. “That is such a basic need for families when they have a difficult diagnosis and we are able to either prevent a new cancer or detect a new cancer very early that might have been life threatening for that child. If we know ahead of time and we are looking for it, we can catch it when it’s just a tiny cancer and when treatment is so much more effective. This means the chance for a cure is so much greater.”

Bel knew the hallways of Cook Children’s well. Born with a medley of complex medical diagnoses, she spent much of her life in and out of the hospital for ailments, procedures and tests.

In May 2016 after months of stridor (a wheezing sound caused by disrupted airflow), croup and pneumonia, Bel’s mother Vicki and father Jess Coonrod discovered a mass in Bel’s nostril. A biopsy confirmed a diagnosis of non-Hodgkin’s Lymphoma Diffused Large B-cell.

“When she was diagnosed with cancer it was heartbreaking,” Vicki said. “She asked us if she was going to die. So we had a long talk. After that conversation she said, ‘I’ve beat other stuff, I’ll beat cancer too.’”

As hard as she fought, Bel lost her battle with cancer at 6 years old. She died unexpectedly from pulmonary hemorrhaging on Feb. 17, 2018.

Throughout her young life, Bel seemed on the verge of victory against her disease. After learning of her diagnosis, she immediately began treatment. However, the cancer began to manifest itself in Bel’s mouth and lymph nodes, which left her with a whisper. Bel continued to fight alongside her family and friends at the medical center, and was deemed cancer-free in August 2016.

No sooner did Bel beat cancer, was she diagnosed with a common variable immune deficiency called B-cell Blood Disorder less than a year later in June 2017. It was another diagnosis that caused her cells to mutate and crowd together under her skin and on her organs. She began a clinical trial and was able to receive one of three scheduled doses. Her parents learned after her death that the trial was successful, and Bel was free of the disorder.

Bel’s life was full of obstacles, but she didn’t let any of this phase her. She was known as the “itty bitty girl with a great big spirit”, and had an even bigger will to give back to others.

Bel was born with club feet, bilateral radial dysplasia (shortening and directional deviation of the arms) and missing thumbs. She contracted bacterial meningitis as a 1 year old, which led to the diagnosis of pituitary dwarfism. Her little sister, Clar, was born shortly after and both were diagnosed with Ruthmond Thompson Syndrome, causing a compromised immune system that puts them at a higher risk for cancer.

“Bel was a medical child her whole life, which meant she was in and out of the hospital her whole life,” Vicki said. “We’ve faced lots of battles with her. She had been so sick leading up to the diagnosis, so it was just going into the mode of ‘do what we have to do to overcome this.’”

Despite the diagnosis, Bel held onto her contagious smile and her love for others. She could always be found welcoming new patients into the playrooms of the medical center. She continued to donate her birthday gifts to other patients, and held drives of her own to bring in donations for the oncology floor.

In May 2018, Bel’s parents and her younger sister founded Bellanne Butterfly Blessings as her legacy, which carries on her wish to “spread kindness by blessing others. Her memory is ingrained by her family’s will to continue to serve the community and the patients at Cook Children’s.

Their organization collects donations for specialty care packages for patients and families on the oncology floor. The Coonrod family’s own experiences and memories of the unit sparked inspiration for care package needs that patient families typically go without.

“It started out as our way of healing. As we’ve seen it develop, it’s become our way of serving,” Vicki said. “There were so many times when we were blessed by others on the oncology floor.”

Although they aren’t in the medical center as much as they were when Bel was here, Vicki, Clar and Jess continue to make their rounds, giving comfort items to patients and families along the way.

“To know that we are helping other people just like Bel did is a gift,” Vicki said. “It’s been a lot of work but it’s been so healing.The 24/7 fever, appointments and everything else at the medical center; we still have a purpose.”

As the parents of six, Dave and Jeanie Caselman have mastered the art of handling whatever life throws at them. Whether it’s school events, sports, graduating from high school or starting college, they thought they had experienced it all with their kids.

That is until five months ago when one of their children was diagnosed with cancer.

On April 1, 2019, their 8-year-old son Treagin was playing with a friend when they collided. This kind of thing happens, and once immediate injuries were ruled out, his parents didn’t give it a second thought. After all, kids will be kids. However, shortly after the collision, Treagin began complaining of chest pain that came and went...and eventually never went away.

On April 19, Jeanie and Dave decided to take Treagin to his primary care physician, Smita Suresh Ranade M.D., a Cook Children’s pediatrician in Richland Hills, who found a mass on his left side and sent the Caselmans immediately to Cook Children’s Emergency Department. Once there, X-rays were taken and the Caselmans were told that an oncologist was coming to speak with them.

As parents there is nothing scarier, Jeanie explains. There are some things parents hope will never happen to their child, and this was at the top of the list.

When the X-rays came back they revealed a large mass on Treagin’s left chest wall, as well as a chest full of fluid. A biopsy was performed that confirmed Treagin had Ewing Sarcoma, a rare form of bone cancer. It was at that moment that their world was turned upside down.

No parent wants to watch their child go through what Treagin currently is. Dave and Jeanie admit that it’s easy to get down and ask why or dwell on how he doesn’t deserve this, but watching Treagin’s positive attitude has helped them focus on the good in a tough situation instead of the bad. Treagin’s “it is what it is attitude,” and his ability to roll with the punches, while remaining positive has been a saving grace to his entire family.

“It is our job to comfort Treagin when things get tough,” Dave said. “We want to be strong for him, but what he doesn’t realize is that his positive attitude and constant smile makes it easier for us to dig deep and be strong for him when he needs it most.”

Parents don’t always realize how comforting a simple smile or laugh from their child can be in these situations. Treagin’s first few rounds of chemo were tough on him, Dave explains, the chemo shots he gets usually make his bones ache, but he hasn’t let that stop him.

The thing that has amazed Treagin’s parents the most throughout this journey is how much he wants to know what is going on and how willing his doctors and nurse have been to explain things in ways he understands. He asks questions, wants to see pictures, X-rays and anything else they will show him. He is always aware of what is happening and what is coming next.

“I think the fact that he is so inquisitive and willing to learn about what is going on throughout his treatment has helped us,” Jeanie said. “He doesn’t act afraid when doctors explain the next treatment, he just keeps smiling and as a parent that inspires you to stay strong.”

“Treagin is one of the most curious patients I have ever interacted with, he has the ability to vocalize what he wants to know and exactly how he is feeling,” Anish K. Ray, M.D., a hematologist and oncologist at Cook Children’s, said. “Since he is so aware of what is going on, it only seemed reasonable to me to allow him to be included in any decisions made.”

Even though he has limitations, Treagin continues to live life to its fullest. Whether he’s asking if his friends can come over to play video games or begging his parents to take him to watch his sister, Tavvy, at her different sporting events, Treagin is still tackling life head-on and isn’t wasting a single moment.

“Throughout all of this he has never stopped smiling,” Dave said. “He inspires me to keep going and to find joy in every situation no matter how hard."

By Libby Collins

Christian Englert was born with genetic hand tremors, like many of his family members. The tremors were never an issue, especially when he was drumming or doing school work … until he turned 15 when they helped diagnose a rare brain tumor.

At his annual physical, Christian mentioned his worsening tremors to his doctor and was quickly referred to a neurologist. As a family, they decided to go ahead with an MRI for peace of mind. Christian’s hand tremors had been the only noticeable change so there wasn’t an excessive cause for concern.

“I was with Christian at the very first MRI that we thought was just going to be routine,” Christian’s mother Shanna Englert said. “They had told us they weren’t going to be using contrast, but they came in toward the end and said they wanted to just go ahead and do it. At that point, my mommy alarm was already going off because it wasn’t what we were told originally.”

Within a few minutes, the MRI started again but Shanna was called out of the room. Christian’s neurologist was on the phone. He explained he wouldn’t normally give this news over a phone call, but the urgency was critical. There was a mass on Christian’s brain.

“There was a six week period between the MRI and Christian’s original physical,” Christian’s father Martin Englert said. “At one point we were just about to cancel the MRI because no one thought it would show anything serious. What if we hadn’t done the MRI? We could have lost him.”

The following hours after that phone call became a blur, according to Shanna. They immediately went to Cook Children’s for severe hydrocephalus, a condition caused by the tumor and resulted in too much fluid and pressure on the brain.

“When we got to the hospital everyone was confused because he didn’t have any symptoms. He wasn’t tripping, no headaches and no nausea. There was nothing on our radar saying this MRI could show something so there was no preparation on our end,” Shanna said. “I went from picking him up at school at three o’clock to him being in brain surgery the next day. His surgeon called him a ticking time bomb.”

Christian went into surgery the following morning to relieve the fluid and pressure, and take a biopsy of the tumor. Ten days later, he was diagnosed with Pineal Parenchymal Tumor with Intermediate Differentiation (PPTID), a rare form of cancer with both malignant and benign cells with only five prior diagnosed cases in the U.S. since 2000.

“The list of possibilities was so long. As a mom, that list overwhelmed me more than the actual cancer diagnosis because you have all these dreams and plans for your child,” Shanna said. “What is life going to look like after treatment? There were just so many unknowns, and as a parent to hear all of this, it was just like all these dreams came crashing down.”

With so few cases to study, Jeffrey Murray, M.D., medical director of Neuro-Oncology at Cook Children's, and John Honeycutt, M.D., Cook Children's medical director of Neurosurgery, had to research the production of a plan to safely shrink and remove Christian's tumor.

“We began creating a treatment protocol after review of the medical literature and discussions with colleagues across the country,” Dr. Murray said.

Dr. Honeycutt performed Christian’s initial surgery to relieve the pressure on his brain, as well as the tumor removal surgery three months later.

"A tumor in the pineal gland is an unusual area in the brain because it’s in the center. It’s more difficult to get to and it has a lot of important structures,” Dr. Honeycutt said. “We went in with an endoscope and navigated down to the bottom where there’s a membrane and poked a hole in it. It created a detour for the spinal fluid called an ETV.”

Christian later underwent additional surgeries to remove the tumor, insert and remove his port for chemotherapy and realign his right eye, which occurred as a result of his prior brain surgeries.

Six months later, after four total surgeries, two rounds of chemo and 30 treatments of radiation, Christian was deemed to have no evidence of disease. To this day, the tremors aren’t related to his tumor but acted as a signal that something had changed.

“Even though we’re now a part of a group that we didn’t want to be in, it’s turned out to be more of a joyful mission. Cook Children’s has become a part of our family. Dr. Murray, Dr. Honeycutt, nurses and staff that support them are people that are a part of our lives,” Martin said. “When we walk in there it does feel like a triumph, but it also feels like we have an opportunity to bring hope to the folks there. We know there are some stories that don’t end as ours did. We want to continue to be a light for others.”

Christian has now been in remission for four years. He still loves to play the drums in his spare time and has just started his sophomore year at a local university. He remains an advocate for childhood cancer awareness and the Make-A-Wish Foundation.

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

The life-changing news can mean the loss of a “normal” life. Even the most straightforward cancer with a 95-percent cure rate can impact jobs, marriage and the children’s sense of security.

And in the most tragic cases, the diagnoses can result in the death of a child.

“Despite amazing advances in childhood cancer treatment, too many children will lose their battle,” said Kelly Vallance, M.D., a hematologist and oncologist at Cook Children’s. “Parents, siblings and friends are left behind to deal with their loss and grief, often without support.”

As a pediatric resident, Dr. Vallance noticed the special bond that developed between families of a child with cancer and their health care providers. So many families were in and out of a hospital over the course of years.

“That can be a sharp sever for families,” Dr. Vallance said. “In my training I felt there was a lack of end of life support for families. A lot of families feel once the goal of treatment changes from cure to comfort and they leave the hospital, a lot of families feel abandoned. Now they are home, meeting new caretakers or leaving the hospital without their child. They feel they’ve lost the security they have felt for so long being in the hospital.”

Dr. Vallance joined Cook Children’s in 2009, specializing in treating childhood cancer. In the back of her mind, she knew wanted to do something to help grieving families.

Cook Children’s Pastoral Care plays a pivotal role in helping families throughout the hospital who are coping with the death of a child, including children with cancer. But because of the special bond created with families and staff in hematology/oncology care, Dr. Vallance wanted something specific for those families.

After applying and receiving a scholar grant through Hyundai Hope on Wheels, Dr. Vallance started the Cook Children’s Oncology Bereavement Program. The purpose of the program is to provide and maintain a therapeutic relationship for patients and families during the entire spectrum of their disease, up to and including their death and 18 months past that date for their family and friends.

As Family Care Coordinator at Cook Children’s, Mandy Sale serves as a familiar face and primary contact for families in the Hematology/Oncology department. She visits the families and is an advocate for them during their stay in Hematology/Oncology. Because of her familiarity with these children, it only made sense that she would also help facilitate the Oncology Bereavement Program.

Sale and Dr. Vallance are two of a group of health care professionals involved in the program, including physicians, nursing, child life, pastoral care, social work and ancillary staff.

The group supports the patient and family throughout the continuum of end of life, death and the grieving period.

The experts in this field also offer help to those treating the families. An aspect of the program involves supporting the emotional needs and preventing compassion fatigue for the pediatric oncology staff.

But the primary focus is on the families. Few Pediatric Oncology Centers have organized or standardized support protocols in place for families during and after the loss of their child.

“We want to give comfort to parents, siblings and friends who are left behind to deal with their loss and grief," Sale said. "They are often left behind without support. Children with incurable or progressive illnesses, such as cancer, often express concern for their parents and siblings. They worry they will not be able to cope when they are gone. Through the bereavement program, we help to meet these hopes of our patients by caring and helping their loved ones during one of the most stressful life experiences and the lifelong grieving process."

The Oncology Bereavement Program includes:

Oncology Caregiver Bereavement support provides personal communications with the family, including:

• Maintaining a therapeutic relationship with all patients.
• Facilitate legacy building activities with families including trips/wishes when possible.
• Support for patients/families that remain inpatient for end of life care.
• Support for patients/families through transfer to home care or hospice care.
• Continued support by phone, for those who have left the hospital, by a familiar and involved team member during the hospice phase until time of death.
• Bereavement package at time of death with resources for support.
• Attendance by Oncology representatives at local funerals.
• Coordination of letter from caregivers.
• A personal card to family on patient’s birthday and anniversary of death.
• A bereavement phone call data base for follow up phone calls, from an involved familiar care giver, to families at 3,6,9,12 and further as needed.
• The option of trained therapist/counselor to visit child’s class and siblings’ classes to answer questions and provide grief counseling.

Bereavement Programs offered to families include:

• An annual Remembrance Ceremony.
• Camp Morning Star- A weekend camp for families who have lost a child that was treated at Cook Children’s. The camp is held annually at Camp John Marc in Meridian, Texas. Parents and children have a chance to enjoy being together as a family and also participate in therapeutic activates to help them cope with their loss.
• Sib Shop- Sib Shop is a national organization that is focused on helping meet the needs of siblings of kids with chronic illness. This group is led be a trained Sib Shop facilitator and Child Life staff from Cook Children’s. This is a specific group for siblings who have lost a brother or sister at Cook Children’s. They meet quarterly now but could increase this number with more funding.
• Referrals to appropriate grief family retreats and camps local and national.

“She was very athletic. When the pain began in her knee, we chalked it up to a sports injury,” said Abby Jackson, Danakah’s grandmother.

It was 2016 and Danakah was living with her grandparents in Covington, Texas. She was in the ninth grade and, like most teens, couldn’t wait to get her driver’s license. She was a normal kid, but within a matter of months her life would be turned upside down.

“In February, she started complaining about her back hurting. I took her to the doctor and he put her on some pain pills,” said Abby. “We figured she twisted it or pulled a muscle.”

Then Danakah began losing weight. She lost 15 pounds in less than 10 days. It also became difficult for her to breathe. Her doctor knew something was going on and ordered a round of scans. An MRI examined her lower back and a CT scan offered a glimpse into her chest. There it was in black and white – a tumor was clinging onto Danakah’s spine.

“We knew she had cancer. When the CT of her chest came back, they found eight different tumors in her lungs,” Abby explained.

The next day, Danakah and her family made the hour drive to Cook Children’s Medical Center in Fort Worth, Texas. She was admitted to the hospital immediately. Her new doctor, Karen Albritton, M.D., medical director of the Adolescent and Young Adult (AYA) program at the Hematology and Oncology Center, wasted no time getting to work.

“They did a biopsy of a bump on the top of her head. They also found more tumors. There was one under her left eye, one beside her right eye and one in her right leg,” said Abby.

The tumor in Danakah’s leg stretched all the way from her knee cap to her hip bone. Abby suspects it had been growing since her granddaughter first mentioned her knee pain back in the fall.

“It was so much easier to say where the cancer wasn’t. It wasn’t in her brain. It wasn’t in her heart or her colon or her intestines, but she was, head to toe, eat up with it,” said Abby.

Sadly, the cancer was in her blood stream and her bone marrow. Danakah was diagnosed with Ewing Sarcoma and started chemotherapy. She spent most of 2017 in the hospital. Even though she was missing her friends and school, Danakah was able to keep a positive attitude – something her nurses say helped draw them close to her.

“I was fairly new to my job when Danakah was diagnosed,” said Johanna Sargent, Hematology and Oncology nurse. “She was my first teenage girl to take care of and she was so full of life.”

Johanna and fellow nurse Aly Norris spent a lot of time with Danakah during the course of her treatment. They would play ping pong with her in the AYA lounge, walk laps with her around the unit or just spend time talking about her friends, family and hopes for the future.

“She was so funny. Sometimes, in the middle of the night, she would come over to the nurses’ station and show us magic tricks with a deck of cards,” remembers Aly. “She always had us laughing. Danakah was such a light.”

It wasn’t long before the chemo took its toll on Dankah’s hair. While most teenage girls couldn’t imagine going bald, Danakah took it in stride. According to her grandmother, Danakah insisted she wasn’t going to wake up each morning looking at the hair that had fallen out on her pillow. She decided to shave her head instead.

“I remember the day she walked out of her room and she was like ‘look!’” said Johanna. “I went over to her and started rubbing her head and telling her how much I loved it. I think she was a little apprehensive to do it but once it was done, she was so happy.”

Aly remembers when a Child Life specialist brought craft supplies to the floor. Danakah insisted that Aly participate, which she says is ‘just like Danakah.’

“I came to her room and she had two canvases and she told me we were each going to paint a word. She had decided the word would be ‘Daly’ because it was a combination of our names,” said Aly.

Despite her cancer, Danakah was always looking ahead. She was optimistic and sure she was going to get better and get her driver’s license. But by Christmas, her health had taken a turn for the worse.

“We almost had her lungs completely clear when three more tumors popped up,” said Abby.

One of the tumors caused bleeding near her lungs so a chest tube had to be inserted to remove the blood. Danakah was very sick and placed in the Pediatric Intensive Care Unit (PICU).

“She always had a happy attitude about everything but she was in pain,” said Abby.

Abby left her granddaughter around 11:30 p.m. on Jan. 24, 2018 to sleep in her room on the H/O floor. She told her to rest and she would be back soon. In a matter of hours, Abby was awoken by a phone call.

“They told me they had to put Danakah on a ventilator. We lost her at 1:30 that morning,” said Abby.

Danakah remained on the ventilator while the rest of her family traveled to Fort Worth. There were about 30 people in her room when she was removed from the breathing machine. She died on Friday, Jan. 26.

Among those who came to came to say their goodbyes was Ralph, her favorite therapy dog.

“She and Ralph had a special bond. I have a picture of them, both with their mouths open. They were so happy. That’s the photo we used in her memorial,” said Abby.

Johanna was also able to say her goodbyes. While in the PICU with Danakah’s family, someone handed her a bracelet asking it be returned to Aly.

Originally a gift from Aly, Danakah had been wearing the bracelet when she passed.

“On one of her last days on the H/O floor, Danakah asked to have something to remember me by. I said ‘let’s not talk like that’ and she ‘no, if we have something of each other’s then we can be together wherever we go,” explained Aly.

That night Aly went home and found two bracelets. One for her and one for Danakah.

“I keep her bracelet on my key chain as a reminder of her and why I’m a nurse,” said Aly.

Both Aly and Johanna say it’s often uncomfortable when people ask what they do for a living. Most people think being a nurse in a pediatric cancer unit is ‘depressing’ but neither see their careers that way.

“Honestly, our kids bring so much joy into our lives. It’s an honor to be able to be there for these families during such an intimate time,” said Aly. “Being a nurse is more than just medicine. It’s also about loving the kids and helping their families along the way.”

Johanna agrees, saying “I know people are afraid of what we do because they think it’s sad, but it’s not sad. You develop relationships with the patients and their families. Every single one of those kids leaves a mark on you.”

While it’s been nothing short of a difficult journey for Abby and her family, she says she’s thankful for all who cared for Danakah through her illness, especially the nurses.

“It takes someone special to work with children, and to work with children with cancer is even harder. They never let the situation get to them. Every nurse on the H/O floor deserves a raise. They are just wonderful people. We were blessed to have Danakah as long as we did.”

 "Hutson turned 3 and started having several unsettling symptoms all together that I didn't feel were right," Hutson's mother Heather Liles said. "We asked for a blood test up front, and our [primary] doctor never ordered one. We were told his leg pain was just growing pains, bruises were just bruises and that his swollen face was just because of allergies."

Heather pushed for more answers because she knew something wasn't right. Hutson was finally sent for a blood test.

"His swollen lymph nodes were 'fine,'" Heather said. "But something in my heart told something was wrong."

With his mother's intuition guiding his way, Hutson's diagnosis was confirmed, along with his parents' worst suspicions.

"After generic blood tests ordered by his doctor, we came to Cook Children's to have new blood work done and received the diagnosis that same day," Hutson's father Bo Liles said.

Hutson is diagnosed with B-Lymphoblastic Leukemia, and although his life is centered around treatments, his parents still make time for him to still be a kid.

"Being in treatment is a new routine, one that is based around medicine and keeping ourselves and our surroundings ordered and germ free," Bo said. "But mostly, we want him to be a three year-old boy; to play with his hot wheels and dinosaurs, to eat French fries on car rides and ice cream cones. We stay focused on treatment because he deserves a great summer as he beats cancer."

Hutson has found a love for his hat collection throughout his battle with cancer, and his parents love that he has a piece of his life he can choose and control.

"Hutson has a lot of hats," Bo said. "He loves picking his own hats out, which we know will serve us well at various stages of treatment."

Despite spending so much time at Cook Children's during treatment, the Liles family has found comfort in their nurses and doctors.

"We have been absolutely blessed to have the Cook Children's community to surround us and guide us through this treatment as a family from day one," Bo said. "Grateful is just the beginning of how we feel, from our amazing doctor, Dr. Lauren Akers, to Hutson's favorite nurse, Allie Barnes, every step from in-patient to his clinic visits are full of patience, positive vibes and thoroughness!"

- Story written by Ashely Parrott

Beginning again:

Following the news of Tatum’s relapse, Michael and I quickly learned more about what we were facing. Mercifully, the leukemia was isolated in Tatum’s CSF and she would not need a bone marrow transplant. But her new two-year treatment plan would be exponentially harder than what she had already endured. She would immediately be placed back on high dose steroids. She was scheduled for two 28 day periods, one 21 day stretch and many short “pulses” in between. The side effects of long-term steroids are extremely difficult and we could not fathom this. The list of chemotherapy drugs was also overwhelming. Some were familiar to us, but others were new and held the possibility of harsh side effects. And then the word radiation stung our ears. Late in her treatment plan, Tatum would be fitted for a mask and receive 12 doses of radiation to her brain.

One moment at a time. Breathe. No negative air. Look outward. Pray. What had we learned? We were dazed and unsure how to proceed. Yet we knew we had to focus hard and dig even deeper into our reserves of strength and faith. We had to find our center again, and quickly. We’d come to the medical center that morning for a simple, outpatient procedure and by that afternoon Tatum was moved upstairs to a hospital room. We had so many decisions to make. Where would we stay that evening? How long would Tatum be inpatient? What about school for Olivia and work for Michael? We didn’t even have a change of clothes or a toothbrush. Even the smallest choices seemed monumental.

Temporary relief came quickly. A social worker stopped by and told us she had reserved our family a room at the nearby Ronald McDonald House. We knew about this place. But, the Ronald McDonald House was for families stranded far away from home in dire situations. Suddenly the reality hit us hard; we were a family in crisis who needed a safe place to land. So, that very evening, miles from home, we moved into a strange new house. Olivia and I stayed together that first night and tried to find our bearings, with Michael and Tatum just hundreds of feet away resting to the sound of hospital monitors and busy night shift nurses watching over them.

More BIG changes

One of the facets of Tatum’s relapse plan included multiple inpatient stays at Cook Children's Medical Center. This meant our family would either be constantly on the road or separated a great deal of the time. After processing the intensity of her new treatment schedule, Michael held my hands and wisely said “Mandy, we need to move to Fort Worth.” I was shocked. These were hard, hard words to hear, yet I knew he was absolutely right. Our family had bonded in ways we couldn’t have imagined before Tatum’s illness. We didn’t want to be separated and we refused to ship Olivia off to be cared for by others. We would find a way to move and there was no further discussion.

Change was happening at lightning speed and there was no time to grieve or process the loss of our home and community in Abilene. Our immediate focus was on Tatum and getting settled in Fort Worth. We needed help. Loads of it. We had to sell our house in Abilene and find a place to live in Fort Worth. We would have to pack our home and somehow get our things moved. We had pets to care for. It was now September; Olivia needed to be in school and we still didn’t have a physical address. Thankfully, Michael’s work offered him an emergency transfer and he had a new job waiting. As the offers of love and support came pouring in, they felt both reassuring and strange to sort through. A dear friend of mine sensed our resistance and firmly spoke truth into my ears. “Mandy, you need to learn to be a gracious receiver. We want to help and it is good for us to give. Now, let us.”

Partners

Accepting help was hard. Immensely respectful of each other, the word “partners” is inscribed inside Michael’s gold wedding band. For better or worse, that singular word describes our relationship. But as strong as we were together, we knew we needed to release our independence a bit and allow others in. The support, prayers and acts of love we received in the early days of our move to Fort Worth are hard to adequately describe. Our needs were simply met. Our friends packed every inch of our home and helped us sell everything we left behind. We found an apartment near the hospital to live in. Our mortgage was paid until our house sold. We found a wonderful school nearby for Olivia. Our kitties were lovingly brought to us. Medical bills were piling up, but we were blessed with monetary gifts that helped tremendously. And, God brought new people into our lives that we literally could not have survived without.

Yet, the hardest days of Tatum’s treatment were reserved for Michael and me to conquer together. When Tatum was in the hospital, we made a decision to limit visits from family and friends. She didn’t always feel good and mostly just wanted us with her. So, as difficult as it was, Michael and I took every single inpatient shift. Together, we established a rhythm that worked and fell into a new flow of life; splitting time and sharing days and nights with our daughters. Olivia and Tatum were best friends and didn’t know life apart from each other so we made sure they had ample time together. We fiercely loved and protected our foursome. And as time moved on, we slowly adjusted to our new spaces: hospital, work, school and home.

There was one more space: a sacred breezeway at the medical center where Michael and I would often meet during inpatient stays. In the early hours of morning after a long night shift, Michael would have a volunteer sit with Tatum for a few moments as he left for the day. From the opposite direction, I would walk towards him; two large steaming cups of coffee in hand. We’d usually share a long, silent hug before sitting down on one of the benches outside to talk. These moments were often the only time we’d have together in a long string of blurry days. He would update me on Tatum’s care and rarely complained of the loss of sleep, though I knew he was bone tired. I would share how my evening with Olivia had gone. Often we would just sit and watch the sun rise; silently praying for a good day.

And then we were off. I would head upstairs for a 12-hour shift with Tatum and Michael would run home to shower, go to work and pick up Olivia after school. He would always bring Olivia for an evening visit with Tatum and then we would switch shifts again. Repeat. Repeat. Repeat. I marvel at how we did this for so long. Yet, these split shifts allowed us such meaningful one-on-one time with our girls that we look back and remain so thankful for. What other circumstances in life would have allowed us 12 hours with each child, over and over and over again? And: Tatum’s memory of those long hospital stays remains wrapped up in one unbelievable question; “but, that was fun, right?”

Yes, darling. Excruciating, maddening, magical fun.

When I think back upon these years and how we maintained our relationship, I am certain there isn’t one correct way to deal with the stress of caring for a critically ill child. For us, it was important to allow each other physical and emotional freedom to exist individually. There has always been an unspoken ease in our relationship and we encouraged each other to take time to step away and do things we enjoyed. Sometimes we had to literally push each other out the door to take a break. But we desperately needed exercise, nature, music, good friends to talk with and sometimes just silence away from the fray. We also had to work hard to carve out time to spend together, to go on dates and talk. Yet, these intentional gifts of time and love fueled us and helped us step back into the fight. And taking care of ourselves helped us to be better caregivers for Tatum. Of course, our friends and family visited when Tatum was home and feeling better and these visits were life giving to us. But in the trenches it was Michael and Mandy; caring for each other and for our girls the best we could.

Summary: Keeping your relationship afloat in the storm:

1. Do what you can each day to make your partner’s path easier. Unselfishly, pave the way for them to succeed and feel confidence and joy.

2. Spend time together as a couple. The money spent on a sitter is an investment in your relationship. Try not to always talk about the situation of having a sick child. Always find moments to laugh together.

3. Freely give each other the gift of time away with no strings attached. Encourage each other’s hobbies and interests.

4. Be a united front with anyone who challenge your boundaries. Offer no apologies or excuses for the decisions you make. As a couple, you are fully charged with your child’s care and you know what’s best. No negative air allowed. Period.

5. Be respectful of each other and guard your relationship above all others. Be on the side of your partner, even if you don’t always agree.

We realize that in some ways, our situation was unique. Not everyone has a supportive group around them to offer help, money, time and prayer. Very few have jobs that will allow a transfer or help them relocate to a new city to be near their sick child. During Tatum’s years of treatment, we met many families who were separated between cities, single mothers alone with their children and some children with no parents present at all. These families had very few resources to manage the stress and strain a pediatric cancer diagnosis brings. May we all be humbled and aware of those around us who need extra time, money, compassion and love. And may we freely give as we have been given!

Nearing the end (again)

Battle worn and scarred, Tatum’s years of relapse treatment were some of the hardest of our lives. Her physical body was pushed to limits we almost couldn’t bear and many days we wondered how we would survive. But our mighty Tatum endured with force. With the help of an extra special homebound teacher, she managed to complete kindergarten, first and second grades with only four hours of school each week. She learned to read and excelled at art. She took walks and rode her bike when she was strong enough. She enjoyed short visits from friends and family. But mostly, she spent hours and hours at home in her own small world of play on the floor. Her imagination soared. She was just Tatum, showing us how to live in her own sweet, quiet space. Upon reflection, her Spirit carried us all.

And when the time came, Tatum faced radiation treatment with more bravery than we could have ever imagined. As her favorite spiritual hymns played in the background, she lay very still to be fitted for a special mask. When it was time to leave her, my eyes blurred with tears as the nurses closed a very thick wall between us; for our protection. Our child lay separated from us on the other side of an enormous slab of concrete; peacefully unaware that she lay simultaneously in a dangerous and life-giving space. For 12 agonizing days, Tatum obediently remained still for her radiation treatments. And after each session she came out smiling with her tiny hand-knitted owl cap on her head; ready for the rest of the day. There are times in life when your soul can utter no words. Your broken Spirit simply groans and grieves. I am certain we were being carried through that space by the Grace of God alone.

Another last day

On Nov. 1, 2013, our anxiety was high as we woke up early and prepared Tatum for another ‘last day.’ She was scheduled for chemo and one final spinal procedure. Her sense of humor disarmed us, however, as she asked me to write a message to Dr. Heym on her back in black sharpie. She scrunched up her face and said “I want you to write ‘stop poking me!’ This is his last chance, mom.” And, as he raised her shirt to begin the procedure, he laughed out loud and snapped a few pictures. Tatum also asked him to wear a pink tutu on her last day, to which he of course obliged.

Later that day, she received her last dose of chemo in the infusion center; a room still filled with brave and beautiful children. My heart was painfully aware that some of these kids would not have a ‘last day of treatment.’ So after her chemo was finished, there were no big cheers or bells for Tatum to ring. We just tightly hugged her nurse, shared a few happy tears and quietly walked out. A phone call came later that evening. Her spinal fluid was clear.

Stronger than Yesterday

As a family, walking with Tatum through her years of treatment remains our greatest achievement. Each of us has our own memories and scars. Our tears could fill bottles. Still, we carry it all with us. You see, when you face a cancer diagnosis, endure treatment and even if you have a ‘last day,’ there is no end. The fear never leaves you. The memories fade but still sting when triggered. Our girls are growing strong and fast, yet we all still experience moments of post-traumatic-stress-disorder. It’s very real.

In one of the most beautiful passages in A Farwell to Arms, Hemingway writes about how harsh and cruel the world can be. Eventually, it breaks everyone. “Afterward,” he says, “many are strong at the broken places.” Yes. We are definitely stronger at our broken places; wiser and more empathetic to the suffering of others. And we choose to believe. Not in perfect, happy endings tied up with ribbons, but in a much Higher plan. One that is greater than what we could have ever created for ourselves. At some point during Tatum’s relapse years, my constant prayer changed from “Save her,” to “Thy will, not mine, be done.” And with that shift, immense peace came.

The relationship between suffering and joy remains a mystery to me, yet I have learned to anticipate and accept them both. There is a Japanese phrase my mother shared with me years ago after my dad passed away; words of truth that I meditated upon during Tatum’s illness and treatment and remember still:

Shikata ga nai: Accept what is dealt, deal with it, and move on.

Shikata ga nai in its deepest essence means letting go. And when you let go of something not meant for you to carry, you find relief. For our family, it reflects the beautiful, God given ability to maintain dignity in the face of an unavoidable tragedy or injustice, especially when circumstances are beyond your control. This is what we did. We lived and breathed this story and are now moving forward, holding onto our hope with a tight fist; and to our belief that, for today, Tatum is healed.

And that is more than enough.

About the Author

Mandy Flaming, LPC, LMFT, is a licensed professional counselor. She's a mother, wife and writer, who enjoys cooking great meals, strumming the banjo, running in Ryan Place and "voraciously reading most anything." Watch for more articles from Mandy detailing her family's life.

For more informaton regarding today's post, visit the following:

• 5 Lessons This Mom Learned After Her Daughter's Leukemia Diagnosis
• Cook Children's Hematology and Oncology Center
• Leukemia and Lymphoma 
• Acute Lymphoblastic Leukemia (ALL)
• Get to know Kenneth Heym, M.D.

Here are some of their stories:

WHERE DOCTORS LISTEN

Linda Downey was just 12 years old when an eye doctor told her he could see fluid built up behind her eyes. It was 1968 and she knew something was wrong because she had been losing her eyesight and ability to walk over the previous two years.

“Other doctors thought it was psychological, but he said this is serious. She needs to see a neurosurgeon,” Downey said.

She was sent to see a physician at Fort Worth Children’s Hospital, located in the spot where the main building of Cook Children’s sits now. During her stay, she would take rides through the tunnel that connected the adjacent hospital (Texas Health Harris Methodist) to the children’s hospital.

“It was like a roller coaster, but it wasn’t much fun for me because of the fluid on my brain.”

Downey underwent three brain surgeries and finally left Fort Worth Children’s in 1969. Since then, she’s been to Cook Children’s many times to visit her friends’ kids who’ve become patients over the years. She says the difference between then and now is incredible.

“It’s very different than it used to be. There’s much more for children to do,” she said.

One thing that hasn’t changed – doctors listening to their patients.

“At the time, I just needed someone to listen,” Downey explained. “I wouldn’t be alive today if there wasn’t a hospital dedicated to listening to children and their parents.”

A NEW HOME

Mandy Flaming’s family also lives close to Cook Children’s, but not because they planned it that way.

Her daughter, Tatum, had been receiving treatment for leukemia for two years while living in Abilene. During Tatum’s final spinal procedure, doctors discovered she had relapsed. It was then that Tatum’s parents knew they couldn’t go home.

“We knew so much of her treatment would be in patient and our family would be separated if we were to travel back and forth,” said Flaming. “We decided, pretty much overnight, to move to Fort Worth.”

They called on their family and friends who had been offering their help for years and asked for assistance moving. Before they knew it, their home was packed up and on a moving truck headed to North Texas.

“We lived in the Ronald McDonald House for a couple of months while we were trying to get on our feet,” she said. “It was difficult at times because it wasn’t what we wanted, but it was what we had been handed so we were going to face it with bravery and go forward.”

Tatum finished her relapse therapy in 2013 and now see her Cook Children’s oncologist once a year for a checkup.

“We’re so grateful for the doctors and nurses. Anything we can give back, we are more than willing, even if it’s a blue light on our porch.”

It’s not about being rude or even shy, it’s just he wants to make darn sure the love is spread around for the people that make up the Neuro-Oncology Program at Cook Children’s.

“That’s probably the reason why I don’t like to do these interviews! I don’t want the attention on me,” Dr. Murray said. “The bottom line is the kids and the team that takes care of them. It’s not me. There has to be a leader. I understand the hierarchy that has to be there. I accept that, but begrudgingly. I am proud of our Neuro-Oncology team. We are truly interchangeable in so many ways.”

This is not just humble speak on Dr. Murray’s part. A large part of the reason he became Medical Director of Neuro-Oncology is because one of his gifts is to build a solid, capable team that he empowers to do their work to the best of their ability.

When asked to talk about Dr. Murray, Mandy Mansell, the nurse practitioner for the Neuro-Oncology Program, says she’s “surprised he is letting you do a story on him.” Mansell praises Dr. Murray as a teacher and says he’s “constantly looking to work his way out of a job by training his staff to function so well.”

Dr. Murray is fond of saying if he gets hit by a bus, his team of Mansell, Neuro-Oncology Nurse Ashleigh Hines and Kelly Rand, the team’s social worker, could step right in and do his job.

“No other team of medical providers can say that they have educational support like we do,” Mansell said. “He does trust us implicitly and values our gut instinct/experiences, because he has taught us those things. He doesn’t view himself as the leader, but more as just another member of the team. Our structure flows naturally out of this. Communication is fluid and immediate because we all contribute to the turning of the wheel in Neuro-Onc. He is constantly telling us that we don’t need him or that we ‘run the program.’ This is validating and continues to make us want to work hard.”

Communication is key for Dr. Murray. Watch him throughout the day and you’ll find him on his phone or on his computer. He’s either e-mailing his co-workers on patient care or checking with colleagues across the nation on the best way to handle a case. He’s also there for those same colleagues when they need help from him.

Dr. Murray jokes that he texts with the neurosurgeons throughout the day like they are teenagers, but adds they are in constant contact for the very serious reasons of making sure they are providing the best care possible for their patients.

“Dr. Murray has been an invaluable addition to our Neurosciences team,” said John Honeycutt, M.D., medical director of Neurosurgery at Cook Children’s. “He has spearheaded our Neuro-Oncology program. Jeff works very closely with us about each individual patient. We have continuous back-and-forth conversations, with emails and texts at the time of diagnosis and initial treatments (surgery) and after care. He readily assumes responsibility for each patient and immediately has his Neuro-Onc team start working on appointments, follow-up, treatment plans, etc. This easy communication with his colleagues allows seamless transition of care and provides personalized care for each patient and their family. Families love the thoroughness and honesty that Jeff brings.”

Linda Margraf, M.D., a pathologist at Cook Children’s, says no one goes as far as Dr. Murray to make sure everyone is kept in the loop of patient care. He doesn’t just send a piece of tissue or wait for the scan to come back. He sends as much background as possible to the pathologists to help them before they even look at the microscope.

He sends emails to Pathology to inform staff of details about an upcoming tumor surgery including the radiology findings and any significant clinical concerns. He visits the team with any special issues and when time allows, he will present patient cases at the Neuro-Oncology tumor board prior to tumor surgery so the pathologists can review the images and hear about plans and concerns of the neurosurgeons regarding the case.

“For some types of tumors (and many other conditions), knowing what the imaging studies show is quite important in rendering an accurate pathology diagnosis,” Dr. Margraf said. “His approach also improves communication between the various specialties, both during the tumor board conference and after. He always emphasizes how much Neuro-Oncology is a team effort and all caregivers, not just the pathologist, benefit from this approach. I think this truly optimizes care for the patient and family.”

Dr. Murray’s team approach and emphasis on communication includes more than physicians. On every email, he copies Rand, the social worker, and Peggy Johnson in Pastoral Care. He consistently invites team members (nurse practitioners, nurses, social workers and chaplain) to attend every formal diagnosis conference and every progression on treatment or relapse conference, as well as every end-of therapy conference.

“He trusts that everyone will bring their professional best to the table for our patients and their families,” Rand said. “He values every team member and their professional expertise, and he actively seeks out the knowledge and thoughts we each have to offer. Dr. Murray is as brilliant as he is humble. He’ll often say that our RN, Ashleigh, and nurse practitioner, Mandy, are the brains behind the whole operation. I think that shows how highly he values his team members and their hard work and commitment to our patients.”

The Neuro-Oncology team faces tough challenges every day. They treat patients for tumors in the brain, brainstem, optic tract and spine, as well as neurofibromatosis and more.

Dr. Murray admits that these day-to-day battles of life and death wear on him. He places the heartache after the death of a patient away somewhere and says he may walk around with a permanent case of post-traumatic stress disorder.

But Dr. Murray moves on and says he tries his best to put his job behind him while he’s at home with his wife and son.

“Obviously you feel for these families and certainly after I had my own child it's become more difficult as it would for anybody because you start feeling … putting yourself in the shoes of those parents,” Dr. Murray said. “Of course it's most difficult when I'm dealing with a child who is exactly the age of my child and happens to be boy like my own son. It's very difficult. I have to catch my emotions and be relatively emotion free when I'm talking to families like that. So it's gotten more difficult since I've had a child, but not impossible.

“And also except for a couple of exceptions most of these kids will be cured. They will be fixed. They may have some damage and some side effects that last a long time but most of these kids are going to be OK. I've learned a lot about the human spirit from a parent’s point of view. It is stronger than you can imagine. It's just witnessing it over and over again. Parents and families in spite of hearing horrible news are almost always able to rally and create something special for their child. Whether it's a child who is going to live or a child who is going to die, it's remarkable how families can create an environment around them to create something really good.”

Just like the Neuro-Oncology family he’s created at Cook Children’s … something really good.

#erasekidcancer

If we had one wish it would be that no child would ever experience 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. Click here to help.

The funds we raise together during September, Childhood Cancer Awareness Month, will support life-saving research, treatments, technology and programs for patients and families at Cook Children's in Fort Worth, Texas. Please help us create hope for kids, families and caregivers who are fighting every day to #erasekidcancer.

All hope seems lost, until an urgent call is placed to a grade school in Grand Prairie, Texas on an otherwise ordinary Friday morning.

Only one special person with super powers can save us now.

Super Aidan!

By day Aidan is an ordinary 7 year old. But during these desperate times, and thanks to the careful planning of Make-A-Wish North Texas, he dawns a superhero outfit to fight crime. The suit, made from his own invention, is equipped with laser beam glasses, propellers with flames on his back, claws and bombs.

“Good morning, Texas! We have some breaking news,” Aidan and his classmates hear as they watch a video. “Villains have taken over the town. So far, villains have been reported at three locations around the area. Currently, Dr. Akers from Cook Children’s Health Care System is being held hostage. We need someone to rescue her so she can help more children. Our friends at Make-A-Wish North Texas told us they know of a brave, strong superhero that can help. Super Aidan, if you’re watching this, your community needs you. It’s time to suit up and save the town!”

Aidan is watching and he springs into action.

He changes into his superhero gear. Before he can save Dr. Akers, he has work to do. He begins his day rescuing his librarians from even more villains and then is whisked away to GameStop HQ. But this is no time for games! That’s because bad guys have made the mistake of holding all the games and staff hostage. Their evil plans are foiled once again by Super Aidan.

He doesn’t have time for “thank yous” though. Lauren Akers, M.D., an oncologist at Cook Children’s needs him! A police escort rushes Aidan to DFW Airport’s Fire Training Research Center in a limo (a superhero with class). Then he is taken by an armored SWAT unit to the sight of the fire. The plane is blazing, but Aidan helps to put it out (while safely in the truck). Then he rushes out of the truck and defeats Flame and then Howler, the villains holding his doctor hostage.

He unties Dr. Akers and rescues her to the cheers of onlookers. Even the bad guys have learned their lesson from Aidan and converted to good. Heck, they may even have some spaghetti and cake afterwards.

Aidan gives Dr. Akers the quickest of hugs. After all, he’s still a 7-year-old boy underneath that superhero suit.

Finally, he gives a press conference to the media in attendance and enjoys a celebration day.

The reporters come at him with hard questions.

“Tell us how you designed your costume,” someone asks.

“All by myself,” Super Aidan answers.

This is the conclusion of a remarkable day, made possible by an incredible effort from so many people. While battling and overcoming cancer at Cook Children’s, Aidan wished to be a superhero. Thanks to the MAKE-A-Wish North Texas, DFW Airport Fire Training Research Center, Cook Children’s, GameStop, Grand Prairie ISD, The DFW Police and many more people, that wish became a reality on Friday.

It’s hard to believe that only two years ago this little boy wasn’t fighting bad guys, he was fighting Wilms’ tumor (also known as nephroblastoma).

When Aidan was 5, his mother, Leslie, was concerned because her son wasn’t eating like normal and didn’t seem to quite himself. She took him to her pediatrician and he was promptly transferred to Cook Children’s Medical Center.

Within a 24-hour period, Aidan was diagnosed with cancer, began chemotherapy and had surgery to implant a port.

“It was my worst nightmare,” Leslie said. “You want to take all this away from your kids, but you can’t. Fortunately, we were at the right place. Cook Children’s was the right place.”

Over the next few months, Aidan had his left kidney removed after chemo failed to shrink the tumor. Continued radiation treatment eliminated the cancer that spread to both lungs.

Today, Aidan is in remission, playing sports and fighting crime thanks to the careful planning of Make-A-Wish North Texas.

“Aidan was never sad. He was always optimistic,” Leslie said. “He didn’t let cancer beat him. He was a hero for real. It makes sense to be doing what we’re doing for him. My kid is strong. He’s a hero. He doesn’t know what a hero he was. Now, I hope this helps him see it.”

Before her rescue, Dr. Akers stands with her captors. The “villains” are excited. They are stretching and getting ready for their epic battle.

Dr. Akers admits to being a bit of an introvert and this is not a normal day for her. She’s never done anything like this before, but for Aidan she wouldn’t dream of saying no.

“I have been with him from the beginning. He’s had an amazing journey. They are a really special family,” Dr. Akers said.

Having Dr. Akers take time away from her busy schedule means so much to Aidan’s family.

“It’s been very emotional,” Joe Wallace, Aidan’s dad, said. “Just seeing him so much better than where he was. I talked to Dr. Akers today. Two years ago, we took him to the hospital and he couldn’t even breathe. Today, he’s doubled his weight. He’s eating. To have Dr. Akers here means a lot. She saves kids every day and for her to get saved, it was his doctors that brought him back. It’s just amazing.”

Not that long ago, all Aidan’s parents wanted was an ordinary 7 year old.

But he’s so much more than that now.

He’s extraordinary.

No, he’s a superhero.

Targeted cancer therapies are biologic or immunologic drugs or agents that target cancer cells in the body while leaving most healthy cells alone. These drugs have become a common treatment option for adults with certain types of cancer and, in recent years, clinical trials have shown success for some childhood cancers.

“Targeted therapy is the future of pediatric cancer treatment,” said Dr. Vallance. “Being able to offer more targeted therapy through clinical trials means Cook Children’s cancer patients will have access to the newest treatments available.”

The oncology team at Cook Children’s diagnoses approximately 220 new cancer cases each year. Approximately one thousand patients undergo active treatment or follow up through Cook Children’s each year.

The grant money awarded by St. Baldrick’s will be used to fund a Targeted Therapeutics Program Coordinator. Under direction of Dr. Vallance, this person will coordinate and collaborate with consortiums and pharmaceutical partners to open new targeted therapy clinical trials at Cook Children’s.

“We’ll be able to efficiently open more trials, which will give all patients in North Texas and surrounding areas access to leading edge clinical trials closer to home,” Dr. Vallance explained.

Cook Children’s is one of five hospitals in Texas, and the only hospital in North Texas, selected to receive a portion of $2.26 million dollars in infrastructure grants awarded bySt. Baldrick’s this year. All of the grants awarded will support groundwork for childhood cancer research.

The St. Baldrick’s Foundation is the largest private funder of childhood cancer research grants worldwide. Since government funding for childhood cancer research is limited, research institutions like Cook Children’s depend on private organizations like St. Baldrick’s for support in finding new cures and treatments.

“The majority of childhood cancer patients are treated on a clinical trial,” said Kathleen Ruddy, CEO of St. Baldrick’s. “Research relies on enrolling large numbers of patients on clinical trials to ensure results are meaningful and advancements are made. Funding from St. Baldrick’s will ensure more kids have access to clinical trials, giving them a better chance at survival and a future with less long-term effects.”

The infrastructure grant awarded to Cook Children’s is the first step in the creation of a formalized Targeted Therapeutics program.

“As this research continues for all types of childhood cancer, we will see more opportunities for each child and young adult to receive personalized, targeted therapies as part of upfront standard therapy,” said Dr. Vallance. “Hopefully, this will lead to higher response rates, less toxicities and more cures.”

“I know I’m stronger than I look and I have a family that loves me and is always here for me. My mom told me that God gives sickness to kids who are strong and can handle the fight. That’s why I’m not sad. God does what he does for a reason and I know I’m going to get better.”

Yesenia started her freshman year of high school last month. While she may not be a typical teenager, she doesn’t let cancer slow her down. She plays tennis and is planning for her future. She wants to become a pediatric nurse and help other young cancer patients get better.

Dora says the hardest part of their cancer journey was the initial diagnosis, but there has been some good to come out of it all.

“It was like a bucket of cold water had been poured on me, as if time froze and they said you’re stopping here. I didn’t have time to react,” said Dora. “We learned a lot about her illness and about how to be strong. It’s been difficult, but it has actually built our bond stronger.” 

About #erasekidcancer

Each September, Cook Children's shares stories and raises funds in honor Childhood Cancer Awareness Month. The money raised for #erasekidcancer supports life-saving research, treatments, technology and programs for patients and families at Cook Children's in Fort Worth, Texas. Please help us create hope for kids, families and caregivers who are fighting every day to #erasekidcancer.

“Kallvin has four sisters between the ages of three and eleven. All of them want my attention. My husband and sister help take care of the girls, but it’s still very hard for me to be there for them and be at the hospital,” Brenda said.

She says her son’s cancer diagnosis came as a complete surprise. And when he was admitted to Cook Children’s, she was amazed to see how many other children were facing the same challenges.

“I would have never imagined there were a lot of kids with cancer or the amount of suffering their parents go through.”

She says the families of childhood cancer patients need a lot of support, emotionally and beyond.

“They spend a lot of time in the hospital without many people coming to visit. I would invite the public to get to know these families and patients, or even just smile when you see them.”

She also says that kind of support is what has helped her through this difficult time.

“I would also like to thank our friends and family for every visit, every phone call, every action of love and encouragement. I keep all of those in my heart. Even though the pain has been great, I am sure, that God doesn’t get it wrong.”

About #erasekidcancer

Each September, Cook Children's shares stories and raises funds in honor Childhood Cancer Awareness Month. The money raised for #erasekidcancer supports life-saving research, treatments, technology and programs for patients and families at Cook Children's in Fort Worth, Texas. Please help us create hope for kids, families and caregivers who are fighting every day to #erasekidcancer.

“By the time she was 1, she had been in the hospital more than out. She had a feeding tube along with countless tests, blood draws, exams and procedures,” said Vicki.

Bel was 5 years old when her parents noticed a pea-sized growth on her nose. Vicki’s gut told her something was wrong, and she was right. Cancer would soon take the roof of Bel’s mouth and damage her vocal chords, leaving her only able to speak in a whisper. After several rounds of chemo, Bel's cancer was in remission. While her family was relieved by the good news, bad news was not far behind. They later learned that Bel has what’s known as a B-cell disorder, meaning the cancer could rear its ugly head again.

“We have our share of bad days, but for the most part Bel is a ray of sunshine for all of us. Her smile lights up the room and she dances her way into the hearts of so many,” said Vicki.

Bel is being monitored closely by her physicians at Cook Children's to make sure she remains cancer-free. For Vicki and the rest of Bel's family, it's hard not knowing what will happen next, but they are taking one day at a time.

"The future is scary, but Bel teaches all of us so much about living life to the fullest every day. Her faith, strength, hope, courage and love are contagious!"

About #erasekidcancer

Each September, Cook Children's shares stories and raises funds in honor Childhood Cancer Awareness Month. The money raised for #erasekidcancer supports life-saving research, treatments, technology and programs for patients and families at Cook Children's in Fort Worth, Texas. Please help us create hope for kids, families and caregivers who are fighting every day to #erasekidcancer.

He was just days away from his second birthday in August 2016 when his mom, Arielle, noticed something was wrong with his arm.

"I thought it was broken. We took him to the emergency room and I thought he was just going to need a cast and we would go home," said Arielle.

Instead, Arielle and her husband learned that Adam had neuroblastoma. The cancer was eating up the bone in his arm and had spread throughout his little body.

"The whole scan looked like someone took a highlighter to it, that's how much cancer there was," she said.

In the months that followed, Adam went through seven rounds of chemotherapy, 12 rounds of radiation, two bone marrow transplants and a surgery to remove a tumor that had developed near his left kidney.

Today, Adam has no evidence of cancer in his body. He's in his last phase of treatment and if all goes well, he could officially be deemed cancer-free by February.

"It's scary because he carries a gene that makes it possible for the cancer to come back anytime, but we try not to think about that," said Arielle.

Helping to ease that worry is a new member of the family. Arielle gave birth to a little girl earlier this month, making Adam a big brother for the first time.

"Her name is Maddison Paige," said Arielle. "She has made everything better and we are so happy she is finally here."

About #erasekidcancer

Each September, Cook Children's shares stories and raises funds in honor Childhood Cancer Awareness Month. The money raised for #erasekidcancer supports life-saving research, treatments, technology and programs for patients and families at Cook Children's in Fort Worth, Texas. Please help us create hope for kids, families and caregivers who are fighting every day to #erasekidcancer.

First, there’s a seven-year age difference. Then, Garrett is married and an operations manager for a company in Las Colinas, while TJ is a single, free spirt and an aspiring actor working summer stock in Kentucky with dreams of Broadway.

But get past the surface and you will find Garrett and TJ share a bond like never before – one has been saved by a bone marrow transplant and the other has provided that life giving donation to someone else.

Their story begins on an early Saturday morning in February, 2013. TJ was a junior in high school. He felt more fatigued and dizzy while performing, but felt it was probably just due to his hectic rehearsal schedule. TJ later told his mother, Sherri that he didn’t feel well and when his symptoms persisted they looked into it further.

TJ went to visit his pediatrician, Tom Rogers, M.D., on a Thursday and had blood work done on a Friday before he was scheduled to go to church camp. The next day, TJ received a tap on his shoulder. It was his parents, Tom and Sherri, telling him that Dr. Rogers called and wanted them to go to the Cook Children’s Emergency Department immediately.

“At that point I was freaking out a little bit,” TJ said. “I was definitely freaking out because I didn’t know what was going on. One of the weirdest moments was when we went to the emergency room and they gave us a private room, which generally doesn’t happen in the ER. By private room, I mean door shut kind of room. The doctor came in and asked if I knew what was going on. The doctor said, “I can tell you right now you either have aplastic anemia or leukemia. At that point, I didn’t even know what aplastic anemia was.”

Shortly after being admitted, TJ was diagnosed with aplastic anemia, which is a blood disorder where the body’s bone marrow doesn’t make enough blood cells. The disease affects approximately three in a million people.

And just like that, TJ’s life was turned completely upside down.

He was admitted to Cook Children’s and immediately pulled out of school for his junior year at Keller high school. His siblings weren’t a match for bone marrow transplant, so he initially underwent a six-month immune suppression therapy in hopes this would provide the cure for his disease.

“I was really hopeful that TJ would have a matched sibling, even though we know the chances of a sibling matching are only 25 percent,” said Richard Howrey,M.D., medical director of the Aphresis Program at Cook Children’s and the associate medical director of the Stem Cell Transplant Program. “When we got the disappointing news that TJ didn’t have a match in the family, we felt our best chance for cure was to give standard immunosuppressive therapy, in part because the high risk of serious complications associated with an unrelated bone marrow transplant.”

At the end of that timeframe, shortly after he went back to school for his senior year, his doctors told TJ the immune suppression therapy was not the long term answer they had hope for and he needed an unrelated donor bone marrow transplant.

For TJ, all of these life-changing (and life-saving) events couldn’t have come at a worse time for a young man with big plans for his future.

He had already started planning for college and a degree in musical theatre. He had 19 college theatre auditions scheduled for November, had been cast in a lead role in his high school’s musical, was rehearsing for the high school fall show, which was to be performed at the end of October and was directing his senior play.

TJ went to his doctors and asked for enough time before receiving his transplant to finish at least two of his high school obligations. Cook Children’s and Be The Match found a 10 for 10 match for TJ. His transplant took place on Nov. 8, 2013, a day he now celebrates as another birthday. TJ finished his responsibilities with proceeds from his senior directed play going to Cook Children’s.

Prior to the surgery, TJ’s parents hosted a “Shaving TJ’s Head Party” at their home. In addition to family and friends, a representative from Be The Match was invited to come and swab people who were interested in signing up with the registry. The age range for donors at the time was between 18 and 40 years of age, which eliminated many of the guests who were high school age or parents of high school students who were older. But Garrett decided to sign up and was swabbed that evening.

“The event was a party. It was fun. It was celebratory,” Garrett said. “I weighed the cost of swabbing, but at the time I didn’t fully know the weight of that decision. I really wanted to get on the registry though. The thought going through my head was when TJ was diagnosed, they tested me and our younger brother, Austin, but neither one of us was a match. I found out that it’s very common for siblings to not to be a match. That’s sad being the older brother and I can’t give TJ what he needs to get healthy. I thought, ‘I would love to be able to do this for somebody else’s brother.’”

TJ has a lot to celebrate now. He’s come a long way from the days of chemotherapy, radiation treatment and 108 transfusions.

“During that time it was very much about what do I have to do now to pursue theatre in the future,” TJ said. “I had to set aside acting for a while to get healthy, but I think it was the right choice. It worked out perfectly.”

TJ is currently entering into his junior year at Coastal Carolina University in Conway, S.C. He is pursuing a degree in musical theatre and is in Italy this fall studying Physical Theatre. As it turns out, TJ donor was from Germany. If both parties agree, donors and recipients have the option to meet. TJ and his donor have contacted each other through Facebook and texts, and plans are underway for TJ and his donor to finally meet face to face during his trip abroad.

“We had pretty much known from the beginning that we would want to keep in contact with this person,” TJ said. “I had to wait two years and then it was sign this form and sign that form. He had to sign a consent as well. He actually reached out to me first. I will meet him in the fall and it’s going to be awesome. It will be really interesting. I’m excited for sure. He seems very down to earth and very understanding.”

So as TJ’s transplant story was coming to the kind of happy ending any actor would want to play, Garrett’s story was just beginning.

Earlier this year, Garrett received a call to say he was a match for someone. Garrett admits to becoming nervous as he read about the procedure. As an analytical person by nature he couldn’t help but think about all the details of the procedure. Plus, he’s not a fan of needle sticks or blood. But after talking and praying with his wife Sheila, he knew this was something he sincerely wanted to do – to pay it forward for the help TJ received.

“It was such an incredible coincidence that Garrett wasn’t able to help his brother, but then had the opportunity to save the life of a complete stranger,” Dr. Howrey said.

In July 2017, Garrett drove to Cook Children’s for the first time since TJ had been discharged. Garrett said it brought back a flood of memories of when his younger brother was a patient there.

He arrived at 6 a.m. for the 8 a.m. procedure. The last thing Garrett remembers was him laughing and saying to the anesthesiologist, “I like this guy.”

The medical team drew more than a liter of bone marrow and everything appears to be a success. A year will go by before Garrett will have the opportunity to meet the person who received his bone marrow.

“I would love to meet that person,” Garrett said. “TJ had to wait two years to get in contact with his donor because he was outside the United State. In the U.S., it’s only a year. So my wife and I are definitely looking forward to making contact when that time frame’s up.

Garrett said his soreness continued for a month or so, but he has since returned to a 100 percent and he’s so glad that he took the time out to swab his cheek at TJ’s party.

“TJ and I have a quite an age gap between us,” Garrett said. “I remember growing up, playing video games and my younger brothers wanting to hang out or whatever with me. I thought they were such pests and I would get upset with them. But seeing them grow up and be in high school, I thought I want to be more a part of their lives. Then seeing TJ go through all of this, I was just like, ‘Man, I really want good quality time with him. It made me want to be closer to him.”

As they sit across from each other talking about their experiences, there’s a brief pause. Neither looks at each other but the feeling is there. They are closer than ever before … a perfect match.

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.”

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.

Spending Thanksgiving week in Illinois, surrounded by Ashley’s family, Josh knew this would be his chance to ask her to marry him. But before they could leave, their 4-month-old daughter, Harper, had an appointment with a Cook Children’s pediatrician.

“She had been spitting up quite a bit. We thought she was a reflux baby and might need a higher dosage of medication,” said Ashley. “We had no idea our world would come crumbling down in 72 hours.”

Their appointment was with Catherine Hampton, D.O. at Cook Children’s primary care location on Keller Parkway. She suggested an ultrasound to make sure an internal blockage wasn’t the cause of Harper’s problems. Though it would delay their trip, Josh and Ashley decided not to wait and booked an appointment for the following day. Little did they know this was the best decision they could have made. The results revealed a mass on the little girl’s pelvis. After a brief round of tests, Harper was diagnosed with neuroblastoma and admitted to Cook Children’s Hematology/Oncology Center in Fort Worth.

“Everything changed so fast. We weren’t really able to process what was happening to our family,” said Josh.

Just three days after her initial appointment, Harper underwent surgery to remove the tumor. By this time, both Josh and Ashley’s families had converged on Cook Children’s. Surrounded by love and support, Harper would spend the following week fighting to get better.

“We spent Ashley’s birthday at Cook Children’s and Thanksgiving,” said Josh.

By Thanksgiving Day, Harper had made a huge improvement. She came off of her IV, had her nasogastric tube removed and was finally able to eat formula again.

But that’s not the end of the good news.

“One night, while walking around with my parents, I noticed this beautiful spot lit up with Christmas lights. That’s when I got the idea in my head,” said Josh.

On Thanksgiving night, Josh took Ashley to that spot and got down on one knee. His mother was able to capture the moment Ashley said ‘yes’.

“The picture means a lot to us. To see a Cook Children’s sign right in the middle, some people may wonder what I was thinking,” said Josh.

“It’s a good reminder for us to be able to look back on what we’ve been through,” said Ashley.

Harper is home now after a whirlwind eight days. And she’s officially cancer free.

“The future looks bright for Harper. She will have to undergo scans regularly for the next three years, but we are hopeful based on the biology of her neuroblastoma that the cancer will not come back.” said Meaghan Granger, M.D., director of the Neuroblastoma and Stem Cell Transplant program at Cook Children’s.

Dr. Granger describes Harper’s case as an excellent example of primary care from the Keller-based pediatricians who pinpointed what can be a common symptom in a newborn as abnormal. She also says this is an exemplary example of the smooth and efficient communication that occurs in an integrated medical system like Cook Children’s.

“The parents called their pediatrician with the symptoms of projectile vomiting and had an ultrasound done within 24 hours. Then, they were able to see an oncologist and had surgery within a day. All of the patient’s history, exam and imaging were immediately visible through an integrated EMR which also saved time.”

Fortunately, Harper's tumor was in a location that allowed it to be completely removed without further treatment.

Those words haunt me. I do not remember what was said next, mainly because a wave of fear and dread engulfed my body. The day I was diagnosed with breast cancer my life changed, forever. The greatest change, the greatest loss, is the sense of invulnerability you have when you are healthy, when you are not in pain.

What followed was a rapid fire series of tests, decisions, surgery, chemotherapy. The speed at which I felt my "normal self" being consumed by the world of cancer was overwhelming. Through it all, I kept thinking of all my patients and their families who have battled cancer through the years. I relived every moment of those cancer conversations. The anticipatory nausea I had prior to walking into a room to deliver the results every parent dreads. The shock and tears and anger that followed the horrific news I had just given.

And every time, I watched my sweet patients and their families turn and face their battle with a grace and dignity that astounded me.

Now that I am a cancer patient, I am even more astounded. I am lucky. I have breast cancer. I knew going into treatment that my cancer, Breast Cancer, receives the highest proportion of research funding by both the government and the private sector.

I knew that although my particular type of cancer tends to be aggressive, because of the hundreds of millions of dollars poured into breast cancer research each year that new chemotherapeutic, hormonal, immunologic and targeted agents now exist that raised my survival rate to 99 percent at 10 years. I also knew that amazing new medications exist for adults that make the side effects of chemotherapy far more tolerable than they were previously.Children with cancer are not as fortunate. Pediatric cancer is grossly underfunded. Last year alone, the National Cancer Institute (NCI) spent 96 percent of its budget on adult cancer and only 4 percent on childhood cancers.

The NCI funded $584 million for breast cancer and only $26.4 million for ALL pediatric cancers combined. This doesn't even begin to take into account private sector and pharmacologic company sponsored funding, which largely goes to support adult cancer research. In fact, research and development of new drugs from pharmaceutical companies makes up more than 60 percent of funding for adult cancer drugs and almost zero for pediatric cancers.

Because of this lack of funding, in the past TWENTY YEARS there have only been two chemotherapeutic agents approved by the FDA for the use in children. More than half of the chemotherapies used in children are over 25 years old. I cannot begin to imagine the COURAGE it would take to fight a cancer battle armed with the knowledge that my best weapons are more than 25 years old.Some people argue adults get cancer more frequently than children and that's why the funding is greater. But when you stop to consider productive years lost by a cancer diagnosis, the effects aren't even close to equivocal.

The average age for adult cancer diagnosis is 67 with an average number of years lost to cancer of 15. The average age of diagnosis for a child is 6 with the average number of years lost to cancer of 71 years.

SEVENTY-ONE years lost.

Imagine if we could have the HEART to change those numbers. Children with cancer could grow up, fall in love, and have their own children. Imagine if we used our BRAINS to find new ways to fund childhood cancer research. These young cancer survivors could go to college, create beautiful art, make new discoveries that could change our world and perhaps find a cure for cancer.

It's October and in case you haven't noticed the world has turned pink for Breast Cancer Awareness month. I am a breast cancer survivor. This message is for all the women in my life. My patients, their Mommies, my colleagues, friends and family. And, for all the women in their lives. One in eight of you will get breast cancer.

Many women think that because there has not been a case of breast cancer in their Family they do not need to be concerned. This is not true. Only 20 percent of breast cancers are familial. You are at risk for breast cancer if you have breasts. 

If you would like to donate to Cook Children's, please visit this page. Learn how Cook Children's is helping to fight cancer.

About the author

Sandra Peak, M.D., is a Cook Children's pediatrician in Lewisville. She earned a B.A. degree in English and psychology from Baylor University, which helps her communicate with the children she treats today. After Baylor, she followed her passion and attended medical school at University of Texas Health Science Center in San Antonio. Her pediatric residency was at Arkansas Children’s Hospital in Little Rock, where she participated in Angel One emergency helicopter transport service. While there, she also received the Jocelyn Elders Award for excellence in community service. Dr. Peaks returned to her home town of Dallas in 1998 and established a Pediatric Practice in neighboring Carrollton, Texas. She joined Cook Children's Physician Network in Lewisville in 2004.

On July 28, 2006, just days before school would begin; we heard the words that no parent wants to hear… “Your child has cancer.” It was the most terrifying; turn your world upside down, day of our lives. Matthew was 5 years old and had been diagnosed with a large Ewing’s Sarcoma tumor in his right femur. He had complained of pain in his leg on two separate occasions that were weeks apart. We shrugged it off as growing pains. The third time Matthew complained, it was a summer afternoon and he had been running around outside. Later that night, he was tired and went to bed early. When I kissed him goodnight, he felt really hot. He had a fever, and no other symptoms … except his leg pain. I knew something was wrong, but never thought for a moment that it would be cancer. We headed to the pediatrician first thing in the morning and within an hour, an X-ray revealed a very large tumor. We were told it looked malignant. Our cancer journey had begun.

His first day of kindergarten would also be his first admission into Cook Children Medical Center. For the next 13 months, Matthew spent a minimum of four to five nights at Cook Children’s every three weeks receiving chemotherapy. Cook Children’s soon became our home away from home. Dr. Jeff Murray was Matthew’s oncologist and he did an amazing job keeping us thoroughly informed of how they would treat and care for Matthew. Did I mention we were terrified? He talked us off the ledge, and we soon dug in, clung to our faith, and began the fight for our child’s life.

Initially, Matthew had to adjust to so many invasive procedures that no 5 year old should have to experience. The first time his port was accessed with a needle for his treatment he was so anxious and tearful. Child Life came to his aide to distract him and before we knew it, we were all laughing. His treatments led to the inevitable; nausea/vomiting, hair loss, and mouth sores. Some days were better than others. But thru it all, everyone was upbeat and positive from the nurses, the child life specialists to the staff that brought our meal trays.

For something that was REALLY hard, Matthew often felt like he was there to play. Water gun fights with empty syringes, daily matches of Uno with the nurses, and lots of smiling and laughter was common. Was this really an oncology floor? If we had to be in a hospital so much of the time, we soon learned we were fortunate to have not only skilled physicians and staff, but people that made it bearable. Matthew actually looked forward to coming in!

Initially, we were told that amputation might be Matthew’s only surgical option to get rid of the massive tumor. Five months into his chemotherapy treatments the MRI revealed that the medicine had shrunk the cancer significantly, allowing another surgical option.

Matthew had his tumor removed at Texas Children’s Hospital in Houston in December, 2006. In a 14-hour -surgery, seven inches of his femur was removed, and his own tiny fibula from his lower leg, was grafted in its place. A plastic surgeon then meticulously vascularized the bone: giving it a blood supply so that it would remain alive, allowing it to thicken and grow into a femur-sized bone over time. We were told the healing could be a bumpy ride and it was.

The upper junction of the grafted bone fractured leaving Matthew in a full body cast for seven months. After being wheelchair bound for a year and a half, Matthew finally was allowed to be up and relearn how to walk with his new bone. We were on the road to recovery, or so we thought. It wasn’t long before we received the news that his complications were not over. Matthew’s growth plate at the knee had closed due to trauma from the tumor resection. He would need to wear a shoe lift to make up for the difference in his leg length, and in time, he would need to undergo subsequent surgeries to lengthen his leg and correct the discrepancy.

His first leg lengthening surgery occurred at the age of 10, when he was placed in a large metal frame called an ilizarov. The apparatus involved three large rings, pins in his bone, and a daily regimen of turning screws and physical therapy which ensued for 5 months. Two inches of beautiful new bone eventually grew into the space that was created.

A year later, doctors nicked the growth plate in his left leg to help close the gap. Matthew was still left with a 3 inch discrepancy to recover. In April of 2015, Matthew had his final leg lengthening surgery. With 3 inches to obtain, and what turned into a very slow healing process, Matthew was in the iliazrov frame for a total of 16 long months. We lived from X-ray to X-ray waiting to hear those magical words, “you are healed enough to remove your frame.”

On July 14 , 2016, Matthew had surgery to remove the ilizarov for good! Although he would need to continue with his crutches a while longer, Matthew was beyond thrilled to reach this huge milestone. His legs were finally even again and would be for the rest of his life. The timing couldn’t have been better as we were just two weeks away from Matthew’s 10 year survivorship. A celebration was in order!

My husband and I surprised him with a fun night out on the town with his closest friends, most who have walked beside and supported him since kindergarten when he was first diagnosed. They were chauffeured around Fort Worth in a Hummer limousine with music blaring, lots of singing, and pure elation. Victory!

Looking back over the past 10 years, we couldn’t be more grateful for the doctors, nurses, and child life specialists at Cook Children who helped Matthew become a survivor! Matthew continues with yearly follow ups in the Life After Cancer Program. Lisa Bashore and Dr. Heym keep up with his tests, keep us current on survivor research, and ALWAYS keep us laughing!

From the time we entered the doors at Cook Children, it became our second home. The amazing, caring staff became our family. We will forever be grateful for the blessing Cook Children has been for Matthew and our family.

He stood strong. He fought hard. He won!!! Celebrating our 10 Year Cancer Survivor!!!

#erasekidcancer

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

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

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

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

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

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

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

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

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

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

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

Heart

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

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

Unfortunately, it also confirmed the mass.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Brains

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

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

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

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

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

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

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

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

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

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

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

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

Courage

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

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

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

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

And, she owns a castle.

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

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

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

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

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

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

#erasekidcancer

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

The transplant program started at Cook Children’s under the direction of Paul Bowman, M.D., with a goal of keeping patients in need of transplant at the medical center instead of sending them across the country to other transplant sites far away from their home.

Over the last 30 years, thanks to burgeoning technology, participation in clinical trials and being a National Marrow Donor Program center for transplant, collection and donation, Cook Children’s has become the third largest transplant program in Texas.

It has grown from only a handful of matched sibling transplants into approximately 40 transplants annually.

“Where a transplant 20 years ago would have been a treatment of last resort, this is absolutely not the case today. It is now a very intense treatment we are offering patients early on in their therapy with the hope that we can save more children and they can live long and productive lives,” said Gretchen Eames, M.D., M.P.H, medical director of Cook Children’s Hematology and Oncology Center.

The marrow inside our bones is responsible for making the blood cells our bodies need. When this process is interrupted or fails, it can cause a wide variety of health problems, some of which can be life threatening.

The hematology and oncology team ask families to think of bone marrow as a big factory that makes billions of stem cells for your body to use:

• Bone marrow is the spongy stuff inside all of our bones.
• The stem cells are stored in the bone marrow until they are needed.
• When they grow up, the stem cells leave the bone marrow and move into the blood where they can do their jobs.

If a child’s bone marrow factory is not working right because of cancer, a blood disorder or other kind of damage, a stem cell transplant will replace the “old” factory and give him or her a brand new factory that works the right way.

Doctors decide who will be the source of stem cells for the child’s transplant. The decision is based on the child’s diagnosis and special blood testing called tissue typing. In general there are two types of stem cell transplant:

Autologous:

• The child will receive his or own stem cells and the transplant is needed to support the patient during very intensive chemotherapy.
• This type of transplant is often used for children with neuroblastoma; this type of transplant might also be used for Hodgkin lymphoma or certain types of brain tumors.

Allogenic:

• The child will receive stem cells from someone else who has a similar tissue type. This donor might be a brother or sister or maybe someone the child has never met through a donor program.
• This type of transplant is often used for children with leukemia, lymphoma, severe aplastic anemia or other blood disorders, certain metabolic disorders or certain types of inherited problems of the immune system.

Through the program’s affiliation with the National Marrow Donor Program (NMDP), Cook Children’s has access to donor registries from all over the world. These registries can find donors for bone marrow, peripheral blood stem cell and umbilical cord blood transplants.

The Cook Children’s Bone Marrow and Stem Cell Transplant program is actively involved in clinical research as well. The program is a member of the Center for International Blood and Marrow Transplant Registry (CIBMTR), the Pediatric Bone Marrow Transplant Consortium (PBMTC), Clinical Trials Network (CTN) and the Children’s Oncology Group (COG), as well as early investigational consortiums, including New Approaches for Neuroblastoma Therapy (NANT) and Therapeutic Advances for Child Leukemia (TACL).

“Seventy percent of patients in need of a bone marrow transplant don’t have a match in their family,” Dr. Eames said. “If they don’t have a match within their family, the only recourse is to look through national and international donor registries to find a match. In 1993, when we did our first unrelated donor transplant, that was a big step for our program and allowed us to treat more kids right here at home. Nowadays, nearly 50 percent of our transplants are from unrelated donors.”

At Cook Children’s, the primary patient diagnosis is Acute Lymphoblastic Leukemia (ALL) with 60 percent of the patients having a malignancy of some type and 40 percent being nonmalignant disorders, such as bone marrow failure syndrome, immune deficiencies, red blood disorders and metabolic disorders.

For more information:

Certain diseases and treatments can deplete a child's healthy stem cells. Sometimes the body needs help to replenish those cells. When this happens, your child may require a very complex process called a stem cell or bone marrow transplant. Click to learn more about the program.

Since 1986, Cook Children's Bone Marrow and Stem Cell Transplant program has performed nearly 1,000 transplants in children with cancer, blood disorders or inherited conditions. That's what makes this program one of the more diverse and experienced pediatric transplant programs in the Southwest.

Cook Children's is a member of:

• The Center for International Blood and Marrow Transplant Research (CIBMTR)
• Pediatric Blood and Marrow Transplant Consortium (PBMTC)
• The Children's Oncology Group (COG) stem cell transplant section.
• We are accredited through the Foundation for Accreditation of Cellular Therapy (FACT).

Over the last three years, 30 to 40 transplants were performed every year for a variety of diseases, with leukemia being the most common primary diagnosis.

#Erasekidcancer

September is Childhood Cancer Awareness Month. This month, we're pulling back the curtain to share what Cook Children's is doing to fight pediatric cancer. Stories will be shared to reflect the hearts of our caring professionals and volunteers, the brains of our clinicians and researchers and the courage of our patients and families.

Not that long ago, the Hawkins wondered if they would ever get home and return their life to some sort of normalcy. Even today, Melinda, Adalynn's mom, can’t believe how much time her child has spent fighting acute lymphoblastic leukemia (ALL).

Through the end of 2015 and the beginning of 2016, Melinda spent Thanksgiving, Christmas, New Year’s and even her 9-year wedding anniversary with her husband Eddie, with Adalynn at Cook Children’s. During the first few weeks of her stay, Melinda and Eddie didn’t leave the Pediatric Intensive Care Unit at Cook Children’s. Eventually, she and Eddie switched off every night.

Today, Adalynn is in remission. She's started her second round of maitnenance for her cancer. She receives chemo in once a month and steroids the first week of every month at the Grapevine Hematology and Oncology Center. 

Melinda knows her child is doing well for all she's been through, but she welcomes prayers because the long road ahead for her little girl. 

It's already been quite the journey.

"For the first time in a long time, I don't think about her cancer every second of every day," Melinda said. "Adalynn is doing great. She's almost back to her old self. She's smart as a whip and so aware of everything that's happened to her. The other day we were going to pick up her prescriptions up at the medical center and she told everyone she met, 'I have cancer and I have chemo.' She loves the Grapevine clinic. She knows the clinic. She says it's her clinic and the nurses are her friends."

Now, all that remains is a not too distant, horrible memory.

The night before Thanksgiving 2015, Melinda took Adalynn, 18 months old at the time, to Wichita Falls, Texas to spend the holiday with her family. Eddie flew to California to be with his folks.

Adalynn had been running a low grade fever for a couple of weeks that got worse as they drove into Wichita Falls from their home in Saginaw, Texas. As precaution, Melinda took Adalynn to the local urgent care.

By the time they reached the urgent care, Adalynn appeared extremely pale. She bypassed the Urgent Care and went to an ER. Even then, Melinda thought it was probably only an ear infection.

Blood work would show otherwise. Within 30 minutes, doctors came in to tell Melinda they feared her little girl had leukemia and they rushed Adalynn to Cook Children’s.

“I was in shock. I started crying. I scared Adalynn, but I couldn’t help it,” Melinda said. “My husband was in California during all this. I was scared, but we still didn’t realize how bad it actually was.”

Soon, Adalynn was in the Pediatric Intensive Care Unit (PICU). It was then that Kelly Vallance, M.D., a pediatric hematologist and oncologist began to care for not only Adalynn, but her mom too.

“She made it very clear that it wasn’t our fault,” Melinda said. “I loved that because we were like, ‘What did we do wrong?’ I’m sure every parent does that, but it was so good to hear those words from a doctor. I felt bad because we didn’t catch this soon enough. Dr. Vallance said, ‘You don’t know when this started. It could have been only two weeks ago for all we know.’”

In the early morning hours of Thanksgiving as Melinda talked to a nurse, Adalynn’s heart began to fail. The little girl was given CPR for 10 minutes before stabilizing her back.

“She looked like a lifeless baby doll,” Melinda said through sobs. “My sister heard me and she came running down the hall. She grabbed my face so I wouldn’t look in the room.”

Amazingly, after such a traumatic event, Adalynn tried to sit up in her hospital bed and even woke up during two shots of sedation.

That evening, Eddie arrived. Over about an eight hour time period, the Hawkins went from a normal Thanksgiving holiday to thinking their little girl may die.

Adalynn was diagnosed with ALL, Pre b leukemia, which doctors said was curable and treatable. Over the next few days things moved quickly:

• Adalynn stayed on a ventilator and began chemotherapy on Nov. 29, 2015. The next day, Adalynn opened her eyes and began to move more.

• On Dec. 1, she had surgery to put in a Mediport in her chest to receive the chemotherapy. She also received chemo in her spinal fluid while under.

• On Dec. 2, Adalynn was off the ventilator and doing well.

Imagine what your life would be like if this happened to your child and you get a sense of how strong Melinda and Eddie are, but it doesn’t mean that they don’t have their moments.

“It seems like every week my husband and I have a small little break down about how this happened,” Melinda said. “But then we look at her and see how far she’s come and we feel blessed.”

Over the next few months, Adalynn continued her chemo treatments. She has completed her second and third phase.

As she fought her cancer, Adalynn also faced new physical challenges. She had to learn to walk and talk again. She had vocal paralysis from the tubes that had been placed down her throat. But fortunately, everything came back naturally. Her mom said, “she didn’t miss a beat.”

On Dec. 28, Adalynn went into remission and she is showing great signs on her way to recovery. Her mom thanks God for her daughter’s miraculous recovery and looks at the medical care she’s received at Cook Children’s as a gift from heaven. In the same breath as talking about how ICU saved her daughter’s life, she talks about the amazing care the nurses have provided for Adalynn. She laughs when she remembers the nurses insisting on putting her daughter’s hair in pig tails after a bath.

“Cook Children’s has been so wonderful,” Melinda said. “I can’t believe the compassion they have and how amazing they are. I couldn’t imagine being anywhere else. The way Child Life was with her, even when she was kind of out of it, they would still come in and see her. Dr. Vallance was amazing. She was making her last rounds and heard the commotion that first night. She watched her get CPR and held my sister’s hand. She was right there when all that was happening. The entire Oncology Department and PICU hold a special place in our hearts.

Melinda said she and Eddie still have the occassional breakdown when thinking about everything that has happend to their daughter.

But they have made it this far, grateful for their good fortune and saddened for those who haven't been as blessed.

"We are starting September and there's so much awareness about kids with cancer and EraseKidsCancer," Melinda said. "I'm very happy that we are raising awareness, but it's also really hard."

At this point Melinda begins to cry. "We've met a lot of kids while at Cook Children's who aren't there any more. I thank God that Adalynn is Ok, but at the same time my heart breaks for those parents who have lost their children."

As she fights back her tears and says she will continue to pray, Adalynn makes a loud noise in the background. She's on the loose at her home. Those Terrible Twos are at again.

Melinda sighs as she gazes at her daughter.

“Someday she’s going to have an amazing story to tell,” she said.

She already does.