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

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

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

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

Surprising Diagnosis

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

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

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

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

Source of Sunshine

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

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

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

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

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

Larger than life-size digital displays, storybook murals, walking paths that invite exploration and play, and spaces bathed in every color of the rainbow — it’s what childhood daydreams and imaginations are made of. These are also a few of the moments of magic kids and their families will feel, see and experience when they walk through the doors of the new Cook Children’s Medical Center – Prosper.

The medical center opens to the community on Monday, Jan. 9, at 8 a.m., and is ready to serve those from Prosper and beyond seeking care under Cook Children’s signature blue peaks.

The 23-acre Cook Children’s campus in Prosper is the culmination of a multi-year expansion project into the rapidly growing northern region of the state. Cook Children’s began developing the health care landscape in the area in 2019 with the opening of an urgent care center and several area primary care offices, followed by a medical office building and outpatient surgery center in 2020. The medical center will support these existing services with an emergency department; a surgical and procedural floor; an infusion center; an outpatient imaging center; a retail pharmacy; an inpatient unit with medical-surgical and pediatric intensive care beds; and two floors of shell space that allow for growth to meet the future needs of the community.

“Cook Children’s Medical Center – Prosper is the next step in supporting those services and serving families in Prosper and the surrounding communities,” said Rick W. Merrill, president and CEO of Cook Children’s Health Care System. “It brings world-class medical care from Fort Worth closer to the homes of children living in the northern sector of the Metroplex. We’re very excited to be able to offer families the care they’ve come to expect and trust from Cook Children’s but in a location closer to their neighborhoods where they have the support structure of family, friends and community resources.”

A Leading Legacy

Those who know the heritage of Cook Children’s say that while construction of the Prosper campus took several years, it’s actually been generations in the making.

“Multiple generations have built Cook Children’s,” said Kevin Greene, vice president and administrator, Cook Children’s Medical Center – Prosper. “We have a nearly 105-year history of dedicated doctors, nurses and support staff caring for children. We are stewards of that history, and I believe that is one of the key components that differentiates Cook Children’s from other pediatric health care systems. Being able to provide top-tier pediatric care with a world-class experience is a product of our century old legacy and the generations that came before us.”

The patient and visitor experience was paramount when it came to creating the building’s blueprint. Each space of the facility is designed with everything for the child in mind.

In the main entrance, guests are welcomed by a Sistine Chapel-like painting of cartoonish flying cows — a nod to Cook Children’s Cowtown roots — a giant digital wall, and a tile motif of a tree whose color-coded falling leaves create a kid-friendly and interactive wayfinding trail to the emergency department in one direction and outpatient services in the other. At each stop in their journey through the facility, kids and their families are greeted with spaces that invite imagination, discovery, play and rest in a way that connects the dots between their ideal experience at Cook Children’s and the health care they receive along the way.

“If I had to pick one of my favorite aspects of the medical center, it's the initial presentation our families experience when they walk in our front doors,” Greene said. “It’s so focused on that child’s experience, and everything has been designed with the child in mind. You feel like you're in a special place. We were very intentional with that. I can't wait for the community to experience and understand who we are in that first moment when they walk in.”

Critical Additions

The medical center's 10-bed emergency department adds much-needed emergency care beds to the area in a time when many pediatric emergency departments are overflowing from an unprecedented season of viral illnesses. Over the next several months, Cook Children’s anticipates opening an additional 10 emergency department beds to support the emergency care needs of children.

Anticipating future growth, a total of four operating rooms have been built and equipped to keep kids close to home when they need surgery. Two will open with the medical center on Jan. 9. The remaining two will open in the future as the community and its needs grow. Each operating room is equipped with technology that allows for real-time remote viewing and physician collaboration with colleagues at Cook Children’s Medical Center in Fort Worth if needed. This gives Cook Children’s Medical Center – Prosper patients and families the advantage of the health system’s full network of world-class physicians and surgeons.

“I’m really excited about the technology built into this campus, and I like the fact that physicians and providers were involved in the design process from day one,” said Tony Anani, M.D., MPH, MBA, gastroenterologist and Medical Director of Clinical Specialties at Cook Children’s Medical Center – Prosper. “There are some features that we’re really going to enjoy while practicing medicine. One of them is the ability for doctors to beam into our surgery and our endoscopy suites. So all our partners in Fort Worth have the ability to help us with their brain trust for difficult patients up here without us having to move the child downtown, and that would not have been possible without the technology and without it being designed into the building.”

Patients awaiting surgery are prepped in one of 12 private pre-operative exam rooms. A surgery waiting area provides private space for families to wait while a child undergoes a procedure.

Until now, children in Prosper and throughout the northern region needing intravenous infusion therapy would have to travel to Cook Children’s Medical Center in Fort Worth or to Dallas. A dedicated infusion center at Cook Children’s Medical Center – Prosper will now bring this critical service close to home for our families. In addition, a specialty procedure area, also referred to as the SPA, has three procedure rooms for gastroenterologists, pulmonologists and ear, nose and throat specialists. The SPA is designed so that physicians can easily work together on difficult cases.

Supporting each of these services is an imaging center equipped with all of the imaging and diagnostic technology needed to provide advanced care for pediatric patients.

Each inpatient room includes a 65-inch television that can integrate with the patient and family’s personal devices. The television serves as an interactive hub for anything the patient may need, from ordering food to entertainment to connecting and consulting with Cook Children’s specialty physicians at the medical center in Fort Worth if needed.

“We're not just Cook Children's – Prosper. We're part of the integrated health care system,” Greene said. “When a family is cared for on our campus or in one of our clinics, they will have the full weight of the entire Cook Children’s Health Care System behind them. From our home health division, to our health plan and physician network made up of more than 800 physicians and providers, our families can rest easy knowing they now have access to one of the nation’s largest integrated pediatric health care systems focused entirely on their child's care.”

Welcoming New Talent

In addition to its technology, infrastructure and patient experience, Cook Children’s Medical Center – Prosper is attracting trailblazing medical talent and bringing more than 500 jobs to the community. Trailblazers like Kanika Bowen-Jallow, M.D., a pediatric surgeon at Cook Children’s Medical Center – Prosper, and only the ninth Black female pediatric surgeon in the United States. Also, Dr. Anani, who was the first physician hired at Cook Children’s Medical Center – Prosper when all administrators had to show him was an empty parcel of land and a vision. Both Dr. Bowen-Jallow and Dr. Anani shared Cook Children’s vision and have been instrumental in the development of the Prosper campus and its services.

“Cook Children’s is hiring,” Dr. Anani said. “That’s an infusion into the economy of Prosper and the surrounding area. We're hiring people that truly care about providing care for the children in our community. I'm really excited about this because I live in Prosper. My kids go to the schools here in Prosper, and I'm happy that we'll have the care we need nearby. What’s good for kids is good for the community, including the local economy.”

Go here to view the open positions we're excited to fill in Prosper.

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.

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.”

“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.”

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.

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.”

This is the daunting statistic looming over the heads of the team at the National Marrow Donor Program at Cook Children’s. Each day, this dedicated group of six sets out to see how many people they can enroll in the National Marrow Donor Program, also known as the Be the Match registry. Equally as important, they’re also tasked with contacting, scheduling and counseling donors who have been identified as a likely match.

“We have the potential to save anyone’s life,” said Jamie Kayser, the program’s director. “It’s not just blood cancers, the donors we identify also save the lives of patients with diseases like sickle cell anemia. We find donors for both adults and children.”

For Kayser, her work is more than a job. She’s one of the millions of people who have been deeply affected by cancer.

“When I was 27 years old, my first husband died of leukemia,” she explained. “He underwent two bone marrow transplants over the course of his treatment. I was not a nurse at the time, but going through it with him, I realized how important nursing was and I decided I was going to become a nurse.”

At the time, Kayser vowed to never work in oncology or in a bone marrow transplant unit. She ended up doing both. Her first role was as an oncology bone marrow transplant nurse at Cook Children’s, which she accepted in 1994. Seven years later she took over her current position as the director of the National Marrow Donor Program at the hospital.

“I say I’m doing the other side of transplant,” Kayser said. “There’s the side where the patients receive the bone marrow transplant and then there’s this side where we register donors, find matches for patients and get them ready to give.”

The National Marrow Donor Program is a nationwide registry. For those enrolled, the chance of being identified as the best possible donor for a patient is one in 300.

“There are two ways to donate depending on what the patient’s doctor requests,” explained Kayser. “The most common way is very similar to giving blood.”

Seventy-five percent of donors are asked to provide blood stem cells through a peripheral blood stem cell donation (PBSC) donation. This was the case for 21-year-old Andrew Kozman of North Richland Hills, Texas. He knew the chances of being identified as a match were rare when he signed up for the donor registry in late 2018. During his PBSC donation, he said he was shocked to receive a call just three months after he submitted his cheek swab in the mail.

“You always hear about the people who have been on the list for years and have never received a call,” said Kozman. “I was fortunate to get a call just months later. Everything has moved pretty quickly since then.”

To prepare for his donation, a nurse visited Kozman’s home for five days ahead of the appointment and injected him with a drug called filgrastim. The medication increases the number of blood-forming stem cells in the bloodstream. On the fifth day, blood is drawn and circulated through a machine that filters out the stem cells. The remaining blood is returned to the donor.

“It was just like getting a normal flu shot. I felt a little sore afterwards, but that’s it,” said Kozman. “I never really gave it a second thought. I signed up and found out that someone needed my help. I thought ‘I could sit in a chair for a few hours if it’s going to save someone’s life.’”

The second way to give is through a surgical procedure called a marrow donation or harvest. Only 25% of donors are asked to provide blood stem cells in this manner. This procedure is done at a hospital while donors are under anesthesia.

“Unfortunately, there is a lot of misconception about bone marrow harvests,” said Gretchen Eames, M.D., medical director of Hematology/Oncology and Stem Cell Transplant Program at Cook Children’s. “It is considered a minor surgery. There is no incision; no stitches or sutures are needed.”

During a marrow donation, blood stem cells are withdrawn through two small punctures in the back of the donor’s pelvic bone. Discomfort during recovery varies from person to person, but Dr. Eames says donors are usually able to manage any pain with Tylenol or hydrocodone. Most people will make a full recovery within a week.

Rebecca Proctor joined the National Marrow Donor Program registry in 2014 when she was a college student. Now a Neonatal Intensive Care Unit nurse at a Fort Worth hospital, she was also surprised to receive a call informing her that she was a match for a patient in need of a bone marrow transplant.

“I was definitely a little nervous when I first got the call,” said Proctor. “After agreeing to a marrow donation, I would have days here and there where I would panic. But I knew if this was going to save someone’s life then I could do it.”

Dr. Eames performed the procedure on Proctor at Cook Children’s, which is one of two bone marrow collection centers in Texas and the second busiest center in the U.S.

“We do approximately four to six bone marrow harvests a month,” said Dr. Eames. “Our donors come from all over the place. Many of them live here in the Dallas/Fort Worth area, but we have people who travel here from California, the east coast and the Midwest because they do not have a national marrow donor collection center where they live.”

For Proctor, the process was much easier than she anticipated.

“Besides a minimal amount of soreness, this really hasn’t been a bad recovery,” she said two days after her donation. “There’s some hoarseness in my throat from the breathing tube, but honestly, this is nothing compared to what my recipient has been going through.”

While donors don’t know who they are giving to, they are likely of the same ethnic background since donors and patients need to be a close genetic match. Given the current makeup of the National Marrow Donor Program registry, the likelihood of finding a match for a white patient is 77%. African American or black patients only have a 23% chance of finding a match.

To improve these odds, ethnic diversity among people on the registry needs to increase. To put it simply, more people are needed to join the registry.

“Everyone, when they turn 18 years old, should sign up for the National Marrow Donor Program registry,” urged Kayser. “We believe every patient should have an equal opportunity to find a match, regardless of their ethnicity.”

To increase those odds, Kayser’s team hosts booths at live events in North Texas as well as West Texas to enroll potential donors. They answer questions, collect information and cheek swabs.

Proctor, like most donors, encourages others to join the registry. Having gone through the process herself, she says she is glad she was able to help someone in need.

“This is something I am so proud to say I have done. Looking back, I would do it again in a heartbeat.”

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

Life as a parent with a child who has Sickle Cell Disease (SCD) is already frightening enough, but could you imagine this diagnosis with two of your kids?

Mykhia and Malik, now 11 and 12 years old, were diagnosed with SCD within the first two years of their lives. When the family first learned of the diagnoses, they were referred to the Hematology and Oncology department at Cook Children’s.

Their mother, Monique Hammon, was familiar with the disease as it already ran in her family. She knew Malik and Mykhia would eventually need the cure of a bone marrow transplant.

“On my dad’s side, I grew up watching my family deal with sickle cell and a majority of them died from it,” Monique said. “My sister’s son went through the same thing that Malik and Mykhia went through, except he didn’t have a sibling that could donate bone marrow.”

Malik began to have more and more SCD crises, an acute pain episode that occurs when the sickle-shaped blood cells start to clump in the blood stream, and was frequently hospitalized at Cook Children’s.

Monique watched her children struggle to act like kids. They couldn’t play sports or swim due to the frequent crises and health problems, such as signs of stroke and organ failure.

“Mykhiah never had an episode. Her eyes would stay yellow, but one day her spleen swelled up and she had to have it removed,” Monique said.

Siblings typically have the highest chances of becoming potential bone marrow donors, but only 30 percent of families can find a match. Malik and Mykhia’s oldest brother was eventually tested to determine if he could be their cure, and he was.

“They [Malik and Mykhia] had a donor match,” Monique said. “I just thank God that my oldest son was a match for both of them instead of them waiting for a donor to come.”

Mykhia received her transplant first in 2015, due to signs of stroke on her MRI test results while Malik received his in 2016. The siblings can now swim and play soccer without fear of potential crisis.

“While Stem cell transplant can provide a cure for Sickle Cell Disease, it is not an easy cure. There can be many complications. Some patients may not engraft, meaning the donor cells may not grow, and the patient’s own cell grow back instead or a second transplant is needed," said Clarissa Johnson, M.D., medical director of the Sickle Cell Programt at Cook Children's. "There can also be challenges with finding a donor. So unfortunately we cannot consider stem cell transplant to be a universal cure that is available to all with the disease. More research for a universal cure is needed. There are small trials with gene therapy being done currently which I hope will prove successful to offer the chance of cure to even more people with Sickle Cell Disease.”

SCD is the abnormal shaping of red blood cells. The red blood cells are shaped like crescents instead of circles. They don’t last long and they can get stuck in the blood vessels, which blocks the blood flow, often resulting in pain and organ damage.

Approximately 100,000 Americans have Sickle Cell and an estimated 3 million Americans carry the trait, which can be passed onto their children.

Among the many misconceptions of SCD, African Americans are not the only race affected by the disease. While the African American race makes up a reported 60 to 80 percent of Americans diagnosed, people of Indian, Middle Eastern, Hispanic and Mediterranean descent may also be affected.

The cure for SCD lies in bone marrow transplants, and while siblings typically are the best matches for this disease, anyone willing to donate can be tested.

An estimated 3,000 people die each year in the United States from waiting for a donor for a bone marrow transplant because of the lack of donors on the registry.

Donating bone marrow requires less than five percent of bone marrow cells and is typically taken from the hip of the donor or through a non-surgical procedure in which it is collected through an IV.

Jakera wasn’t in pain but her mom, Tiffany Ferguson, noticed her little girl had lost range of motion on her right side.

“She couldn’t open her hands, she couldn’t lift her arms. I immediately called her doctor and told her that Jakera couldn’t move anything on right side. She told me it sounded like a stroke and to call 911,” Tiffany said.

An ambulance rushed Jakera to Cook Children’s where she was treated for a stroke and diagnosed with moyamoya, a more serious disorder that developed from her sickle cell disease. Moyamoya can occur when sickled red blood cells cause repeated damage to the blood vessels in the brain. The blood vessels begin to tangle and create a “puff of smoke” appearance on an MRI.

Moyamoya can lead to more stroke activity and typically requires surgical intervention to improve blood flow around damaged blood vessels. Jakera’s medical team decided to intervene before another stroke could occur.

Jakera had revascularization surgery in February 2019, a procedure where surgeons flipped the protective covering on top of the brain (the dura) to encourage the main artery there, the middle meningeal artery, to create new collateral arteries into the brain.

Following the surgery, Jakera now receives blood transfusions every four to six weeks.

Along with interventions such as blood transfusions, sickle cell disease is also managed by medications and potentially a stem cell transplant for long term success against the disease. But finding a donor can be seemingly never ending. Physicians will look to find a match from siblings and family first before trying to find an unrelated donor, according to Cook Children’s physician Clarissa Johnson, M.D. Jakera has not yet had a stem cell transplant, but her family remains hopeful she’ll find her match.

“A stem cell transplant is a cure for sickle cell disease because you’re basically putting new stem cells in the body,” Dr. Johnson said. “Red blood cells are made from stem cells so if you put new stem cells in the body that don’t contain Hemoglobin S, you are creating a situation where you no longer have stem cells that make sickle cells.”

With sickle cell, stroke and moyamoya, Jakera has endured her share of hardships, but it wasn’t until she was diagnosed with Bow hunter’s Syndrome that she was affected by just the turn of the head.

“She started blacking out three to four times a day. It happens [when she turns] like a bow and arrow hunter when they have to turn their head to the side to aim,” Tiffany said. “She was born right handed but when she turns her body to the right, it cuts off the circulation to her brain so she actually switched hand dominance to the left.”

Jakera had a spinal fuse from the back of her neck down to her shoulders to limit the amount she can physically turn. She can no longer turn more than 90 degrees to ensure there is enough blood reaching her brain. While this is not a cure, her physicians believe it will relieve the loss of consciousness.

Jakera is not the only one in her family impacted by sickle cell disease. Her father also faces medical difficulties.

“There were days where I was running from Cook Children’s to Harris and back to Cook Children’s so that I could be with both of them during their crises,” Tiffany said. “Everyone in the family is learning to deal with it because we know it isn’t going to go anywhere right now, but they understand the most important thing is making sure they [Jakera and her father] are OK.”

Four major diagnoses and two surgeries in five years could seem daunting to most, but Jakera has flown through it all with ease, and has even made the local cheerleading squad.

“She’s like a little woman,” Tiffany said. “She takes it and keeps on moving. The stroke limited her a lot but the squad has been so good to her. She always pushes through.”

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.

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.

With unconditional love comes vulnerability and parents have an overwhelming instinct to protect their children from harm. But it’s an impossible task. Joy and sorrow often walk hand in hand and kids are bound to experience loss, hurt and sadness in their lives. They’ll be left out, heartbroken and lost. And they can become physically or emotionally sick. Dark days will come and perhaps the greatest gift we can offer is our unwavering love, presence and support as they grow through hardship.

Our darkest day came on July 12, 2009. We were living in Abilene, Texas at the time and my husband Michael and I had nervously watched our youngest daughter, Tatum, weaken over the course of a few weeks. She seemed extra tired. She was pale and had a low fever that she couldn’t shake. Her little 3-year-old body started showing too many bruises to explain away by normal play. We finally couldn’t bear it any longer and late one Sunday evening we took her to the ER. Our instincts were right.

As the doctor stepped in to speak with us about her bloodwork; in an instant our world came crashing down. He told us that although he could not confirm for sure, it strongly looked like Tatum had leukemia. In that moment, there was a before and after. Life as we knew it ceased to exist. There is no parenting book or guide to prepare you for a pediatric cancer diagnosis. No one expects this. We were stunned and devastated. Broken to our core. And terrified of the unknown.

Tatum needed to be at Cook Children’s Medical Center as soon as possible. An ambulance was not an option as Tatum’s blood counts were dangerously low and the doctor informed us that the Cook Children’s Teddy Bear Transport team was already in preparation to come to Abilene and fly us to Fort Worth. As we waited, I remember stepping outside to catch my breath.

In that moment, I struggled to form words to pray. Why? Oh how can this be? My soul was broken beyond what I’d ever thought possible. My faith small and spiraling downward. “Save her” was all I could utter.

Looking up, the deep summer night sky was full of stars and time stood still as I finally let myself fall to my knees and cry. As I sat alone, a nurse came outside and wrapped her arm around my shoulders. “Most kids do well with a leukemia diagnosis, mom. Hang on.” It was the first glimmer of hope I had been given and I grasped onto her words tightly. I had to begin to believe in something I couldn’t yet see.

Before I knew it, Tatum and I were flying through that same sky, looking out the window at the stars while Michael had an agonizing drive alone to Fort Worth below us. Tatum had to be strapped to a gurney for the flight, so I was only allowed to rest my cheek near hers and hold her tiny hands. Mercifully, she was not scared. Her sweet spirit was peaceful and calm and watching her in those moments, I knew we had to follow her lead through this new space we were in. We could not let fear, statistics or numbers drive our actions or thoughts. Tatum was already teaching us.

Lesson One: Whatever lay ahead, we would face it together with Tatum leading the way. Our child was more than a set of stats or numbers. Her life had purpose and depth and we had to focus our eyes on her first.

The next day Michael and I were given her official diagnosis; ALL leukemia, Pre-B, standard risk. Her physician, Dr. Kenneth Heym, M.D., a pediatric hematologist-oncologist, did not mince words. Instead, he looked us directly in the eye and said “we know what this is and we know how to treat it. Your daughter has a great chance for a full recovery and we intend to see her through.” More hope.

His confidence, experience and tone literally breathed new life into our weary souls and gave us permission to believe. He gave us an overview of Tatum’s new two-and-a-half year treatment plan and with each word our heads spun at the enormity of it all. He then encouraged us to take a deep breath and focus on the induction phase: 28 days. That was enough. To process the entirety of what lay ahead was excruciatingly hard, so we didn’t try. Tatum was scheduled for surgery the next morning for bone marrow and spinal procedures and to have her port placed for chemotherapy. There was no turning back.

Lesson Two: Don’t look too far ahead. Each day was enough and sometimes even a single moment was all we could bear. Her illness afforded us so little control. Keeping our focus firmly rooted in the present proved to be a valuable tool for our family.

Thankfully, Tatum responded well to treatment. She achieved full remission on day 28 but she was far from done. Leukemia cells love to hide and jump around, causing relapse and research has shown a lengthy treatment frame is needed to keep any stray cancer cells at bay. We had a long road ahead, both figuratively and literally.

It’s a little over two hours from Abilene to Fort Worth and we did a lot of driving back and forth for her treatment needs. And we did our best to settle into our new life of medications, needles and isolation.

With Tatum’s compromised immune system we couldn’t be around many people, and certainly not children. Olivia, our oldest daughter, was 6 at the time and in first grade. One of the worst flu seasons was happening that fall and we made the tough decision to pull her from school to avoid any risk of germs being brought home to Tatum. To give up a school and friends she loved was a sacrifice for Olivia, but she didn’t complain. Her love for Tatum mattered more.

I also had to let go. Before Tatum was diagnosed, I was practicing as a marriage and family therapist but now my work had come to an instant halt. I had the difficult job of calling each client to either refer them or say goodbye. I was now full time mother, nurse, and first grade teacher. But with sacrifice comes immense reward. Michael and I knew the greatest thing we could ever do in our marriage and life together was to raise our girls well and help Tatum heal.

Lesson Three: We had to sacrifice and change our world in many ways. We did what we felt was best at the time for Tatum’s health. Trust yourself, don’t apologize for doing what you feel is right, and don’t allow any negative air into your space at all. We fiercely lived by this principle.

Over the next two years of treatment Tatum had multiple bone marrow aspirations, lumbar punctures, blood transfusions and endured loads of oral and IV chemotherapy. She’d go from having a round belly and “moon-face” from high dose steroids to skinny with no appetite at all. She had several high fevers that sent us to the ER and we spent many nights inpatient at our local hospital as she recovered. Her port was replaced after an infection. The next spring she lost what was left of her beautiful curls. She was unflappable as her daddy clipped her head. You see, leukemia and all its madness was never a barrier for Tatum. She continued to live, laugh, play and love everyone around her. Our home was a safe, calm sanctuary for her to thrive in, filled with her favorite people and things. Olivia became her best friend and truest playmate. We adopted two kittens who were such a comfort. We set up a playset in the backyard. We had chickens and a garden.

We allowed others to care for us as well, through small gifts, meals and prayer when we needed it most. Almost simultaneously life stood still and moved forward with force.

Lesson Four: Keep living in the midst of uncertainty. Don’t let circumstances paralyze you from enjoying life. Be thankful each day for a few things. Focus on others and allow them to care for you as well. Children are fantastic at this and we can learn so much from their example of zest for life.

The light at the end of the tunnel was shining brightly. Tatum’s last day of treatment was marked on the calendar with anticipation and hope. And after two hard years, we escaped to Colorado for a wonderful and healing family trip. We arrived home just in time to turn around the next day for Tatum’s last appointment in Fort Worth. We were excited as she prepared for her last spinal procedure and chemo. We talked with her doctors about port removal and long term follow-up care.

Survivorship.

As we waited in recovery with Tatum after her procedure, two doctors came into the room together. We knew what this meant and the hope we had briefly allowed to take over slowly disappeared as we saw their faces. Leukemia had relapsed in Tatum’s spinal fluid.

This news may have hit us harder than her initial diagnosis as there were no warning signs or symptoms. Every parent of a child with cancer thinks about relapse, but we were blindsided once again. With tears blurring our eyes we listened and tried to make sense of their words. But we were stronger than yesterday. Our renewed faith through our walk with Tatum had spotlighted our strength and resolve. We looked closely at Tatum. She was quietly watching us to determine what was happening and how to respond. She didn’t hesitate long before saying “mom, dad: let’s go. I want out of this room. Either we are going home or we are going upstairs. Let’s get a move on.” Dry your eyes. No pity parties. Movement. So we stood and each of us took one of her tiny hands and stepped forward ready and determined to begin again.

Lesson Five: Don’t put off a wonderful trip, date or moment with those you love. Do the fun things together; whether it’s a game of catch or a roller coaster ride. Each day is full of both promise and uncertainty. And when the unknown comes around again, don’t be held hostage by fear and self-pity. Allow yourself time to feel and process; but then point your arrow forward. And hold onto your hope with a tight fist.

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 information regarding today's blog, visit the following:

• Cook Children's Hematology and Oncology Center
• Leukemia and Lymphoma 
• Acute Lymphoblastic Leukemia (ALL)
• Get to know Kenneth Heym, M.D.

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.”

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.”

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

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

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

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

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

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

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

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

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

I'm gonna get a little personal with this one.

And while I typically write about pediatric health issues on this page, I'm going to broaden things to include adult health too right now.

Did you know you could literally save someone's life by swabbing the inside of your cheek?

Last year, in search of a new way to exercise (and calm my overactive brain), I found a yoga studio in Fort Worth which I now lovingly call home for one hour, three days a week. 

One of the main reasons I love the place so much is that their front staff is so warm, inviting, and cheerful (after a day full of loud toddlers in the office and two loud -angry- toddlers at home, this is what I NEED).

The woman in the picture with me is Suzanne. She has never failed to ask me how my day is going, what challenges I'm facing, and has given me so many resources to better myself. She's amazing and I'm proud to call her my friend.

Suzanne recently started telling me about some strange symptoms she was having. She was really tired all the time. She had new bruises everywhere. She got some weird bloodwork results back. 

She was diagnosed with myelodysplastic syndrome (MDS). This means her bone marrow is failing her. Bone marrow is the goop in the middle of our large bones that makes our blood - our white blood cells, red blood cells, and platelets. Our immune system. Our oxygen delivery system. Our wound-healers!

When your bone marrow decides to tucker out and stop making this stuff, the only thing that will work to "fix" things is a bone marrow transplant. It is a CURE!

She (and thousands of others across the world) are in search of a bone marrow match. The human body is very picky about what bone marrow/blood it will accept as a donor. Usually, a brother or sister can be a good match.

Her siblings, unfortunately, were not a match.

This is where you, me, almost anyone can HELP! I registered to become a bone marrow donor. It was easier than ordering a pizza (which I promptly did soon after).

You type in your name and address and they send you an envelope with swabs in it. You swab your cheeks (for cheek cells) and throw it in a pre-paid envelope and, voila! All done! POTENTIAL LIFE-SAVER STATUS COMPLETE!

I hope so badly that I am a match for sweet Suzanne, but if i'm not - I could help someone else! About 1 percent of people who register become donors. And being a donor usually means something as simple as a blood draw. Read about it! It's so easy!

I encourage each of you to consider doing this! You could save someone's life!

Love,

Dr. Diane

#bethematch #swabbinforsuzy #inthistogether #bonemarrowdonor

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.

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.

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.

After all, he has the attributes that it takes to make one – he’s courageous, brave, has incredible strength and never gives up. He even has his own logo.

And like every superhero he has an amazing origin story.

Micah's parents were students in China when he was 1 year old. His mom, Linda, and dad, Maurice, noticed half of his face was sweaty and the other half was pale white with no sweat at all as if someone drew a line down the center of his face. At first, this happened about once a month, but then it became a daily routine. Soon, it wasn’t just his face any longer, but the left side of his chest, back and whole left arm. 

At a work conference, Linda took Micah to a doctor in Thailand. He was referred to a neurologist in Bangkok where an MRI discovered a massive tumor in his chest and spine.

The family moved back to America where Micah was diagnosed with ganglioneuroblastoma, a life-threatening form of cancer. Since his diagnosis, Micah has faced a heart-wrenching 10 operations and a life of immense pain. He has been on hospice care since June.

On July 7, Micah left for Camp Sanguinity with his siblings, Grace, Nolan and Eden Kate. That evening, Micah had what Linda describes as a “severe pain crisis.” He is currently at Cook Children’s where he is receiving antibiotics and care for an infection around the tumors in his jaw and cheekbone around the eye.

He’s in a lot of pain, as he has been for so much of his young life, but nothing can stop his love for sports, Legos and of course, superheroes. And like any superhero, he continues to fight and motivate.

“You would never want your child to have this disease,” Linda said. “But we are humbled and amazed at the influence of Micah. He has been an inspiration to so many people, including his mom and dad.”

Micah became an inspiration for the TCU baseball team beginning in 2013. Micah and his parents traveled to Omaha, Neb. to cheer on the Horned Frogs at this year’s College World Series.

The Horned Frogs carried constant reminders of Micah with them, wearing his letter M logo on their caps and T-shirts.

“He’s the toughest 7-year-old I’ve ever seen,” TCU catcher Evan Skoug told the Star-Telegram. “They say that God gives his toughest battles to his strongest soldiers. And we’ve seen that’s true with Micah.”

Now Micah faces something far tougher than any supervillain in a comic book and that’s what makes him tougher than any superhero you’ve ever seen. He’s fought against cancer and through it all has inspired people everywhere.

“It’s his personality,” Maurice said of his little boy. “He’s always happy and smiling. He likes to be silly like any child his age. But he also has great strength. We like to say, ‘Never, ever give up.' He’s inspired the TCU baseball team and others to not give up. Micah has been through a lot and he keeps going.”

Micah’s family asks for your prayers for their son and if you would like to help children with neuroblastoma please click here.

Related links:

• The superheroes of Cook Children's Hematology and Oncology Center
• Cook Children's Neuroblastoma Program
• Hematology and Oncology Services at Cook Children's

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

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

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

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

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

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

About the author

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

Wendy says the story of her daughter's battle "could be a novel." She wants people to know her daughter, who is a child with Down Syndrome, and their incredible story.

"Children with Down Syndrome have an incredibly higher chance at defeating leukemia," she said. "And by higher I mean get on your knees and say,'Thank you Lord for this extra chromosome!'"

After more than 700 hours of chemotherapy and eight months of inpatient care, Jinger Jo won her batle against cancer. "She did more than win the fight with cancer though," Wendy says. "She blessed me and many others with a new improved outlook on life."

Today, Jinger Joy is doing well and brings joy to her family every day. Wendy shares with us her story of arriving at Cook Children's:

I remember 5 years ago walking off the elevator onto the third floor at Cook Children's and dodging Nerf bullets being shot by nurses into the rooms of children fighting cancer. In my mind I found this highly inappropriate. My child was beginning a battle for her life and these were the professionals that were going to carry us through triumphantly? Not only were they Nerf gun battling, but I wasn't too sure who the nurses were, since they all were dressed in Halloween costumes.

Fast forward eight months and I was completely thankful for the nurses and staff that not only brought life back to my baby girl that cancer was trying to rip away, but they helped us remember how to smile and play while fighting for dear life.

Those crazy nurses, doctors, child life and even security guards that I thought were not taking their jobs seriously at first, proved to be doing their jobs phenomenally as well as putting smiles on the faces of children and parents who felt scared, sick and alone. God bless Cook Children's Oncology (especially the crazy Nerf gun shooting ones).

Putting the "h" and the "o" in hope

If we had one wish, it would be to make it so that no child would ever have to suffer from any kind of illness. Here at the Cook Children's Hematology and Oncology Center, we are working every day on medical treatments and research to help make the blood disorders and cancers that hurt children and teens, disappear.

And just in time because she has a date.

"Her goal was to go to homecoming. She went last year with a little boy, and they're going again this year," said Claudia, Izzy's mother.

You may be thinking 11 is a little young for dating. Izzy's mom agrees, but she says she couldn't keep the two fourth graders apart. Especially since the boy has made the five-hour-trip (with his parents, of course) to Fort Worth, Texas from their hometown of Brownfield, Texas several times over the past year to see Izzy at Cook Children’s.

"She's truly an inspiration. I've had adults tell me that Izzy has changed their lives and made them better people. I think that's her purpose in life," said Claudia.

It's hard not to be changed by a kid like Izzy.

She's been in and out of hospitals, battling leukemia, since she was 2 years old. And while she's made friends during her various stays, she's watched many of them leave through the swinging doors at the end of the hallway and never return.

"I feel bad for the families who have been here two weeks, but we've been in here for 12 months and Izzy hasn't left once," said Claudia.

Part of the holdup was the bone marrow transplant Izzy received at Cook Children’s, which can result in six months of recovery in the Transplant Unit.

All of that is behind her now. It's finally Izzy's turn to leave Cook Children's Hematology/Oncology floor and get back home.

Two days before the big Homecoming game.

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

When it comes to battling cancer: she rocks!

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

Luke's story

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

Our efforts to #erasekidcancer

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

More about Hematology and Oncology

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

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

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

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

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

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

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

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

About #erasekidcancer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

MIBG

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

Bone Marrow and Stem Cell Transplant Program

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

Complex blood disorders and diseases

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

The first way is to prepare your child for the doctor’s visit. Studies show that children are less anxious for a doctor’s visit or medical procedure when they are informed beforehand. Honesty is the best policy when preparing a child for a blood draw, but it is important to use child friendly words.

Bringing a favorite toy or stuffed animal to the clinic can help. Familiar items help children feel safe and less anxious.

At the clinic it is important for you to stay cool, calm and collected. Children feed off of their parent’s emotions and an anxious parent could very easily make for an anxious child.

At Cook Children’s tips for preparation and comfort can be provided by the Child Life specialist on staff. Child Life specialists use their knowledge and background of child development to help practice successful distraction techniques and coping strategies. Comfort tips can be provided by the Child Life specialist to help with the blood draw such as comfort positioning, distraction and child friendly explanations.

Praise goes a long way. It is so important to support your child and provide encouragement during the blood draw and afterwards. Choose specific skills to praise such as, “You did a great job of holding still” or “You took good deep breaths.” Try to avoid any negative comments such as “Don’t cry” or “Be a good girl/boy” because it’s perfectly normal for a child to be nervous or anxious about a blood draw. Instead, validate your child’s feelings by saying, “That was hard, but you did a great job by holding your arm still.”

For more information on how you can help your child cope with blood draws, hospitals or clinic visits, you can read these resources:

http://childlife.org/files/PowerParentsTipSheet.pdf

http://childlife.org/files/ComfortMeasuresandTips.pdf

About the author

Laura Sonefeld is a Child Life specialist at Cook Children's. Our Child Life staff members recognize that hospitalized children still need opportunities to just be kids. They help children and families cope with a hospital experience by providing emotional and developmental support, giving honest information geared to the child's level of understanding and providing fun activities. The Child Life team works with medical and support staff to create a warm, child-friendly environment.

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

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

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

Fighting cancer with Grace

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

Holy crap.

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

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

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

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

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

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

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

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

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

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

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