Since he was 2 years old, Gaites Fisher has had trouble breathing. In addition to severe asthma, Gaites has a condition in which his right aortic arch compresses his trachea, making it difficult for him to breathe. His mom, Angelaka Johnson, tried everything to help; she bought an air purifier, tried to track what triggered his attacks and researched endlessly for solutions to his asthma attacks.

But despite her best efforts, Gaites still ended up being hospitalized six times between the ages of 2 and 5. Allergies or a cold would sometimes trigger the attacks, and she would quickly find child care for her other two children and rush Gaites to the hospital.

“(I felt) like I failed as a mom because I couldn't get his asthma under control. And I didn't know how to help him more,” she said. “And I always felt so defeated having to go to the hospital, knowing we’ll probably end up staying overnight.”

In June 2025, after another hospital stay at Cook Children’s, Angelaka got a phone call about a program that aimed to help her and her son with his asthma.

“I didn’t know what to expect. I thought we would just be on the phone and she would give me info that I already had; that it would be more redundant,’ she said. “And it ended up being a lot more helpful than that.”

The Cook Children's Healthy Homes Program, which celebrated its 10-year anniversary in January, provides free resources, support and education for families and children with severe asthma. Since its inception in 2016, staff have served 1,556 children across the eight-county service area. The goal of the program is to identify and manage the source of kids’ asthma - like dust, dander or mold - and keep families from getting to the point where they need emergency care.

Marquietta Jones was formerly a Healthy Homes program coordinator for eight years and was recently promoted to care coordination supervisor.

She explained how families are brought into the program. Community health workers reach out to families who have had multiple asthma-related emergency department or urgent care visits in the previous six months. The staff reach out to the family and schedule either an over-the-phone or in-person assessment and questionnaire about their home environment and asthma history.

Over three months, families get free one-on-one support by a community health worker to identify home environmental triggers, secure supplies and services and, if needed, obtain referrals to social and medical support.

Angelaka says she was a little skeptical when Community Health Worker Cristina Cantu took her through the assessment, but she quickly realized Healthy Homes didn’t just talk about resources and support; they followed through.

“Usually when you do these things where people say they aren’t going to charge you, they make you jump through hoops to get the things you need, or it wasn’t the things you need. Where in this case, they kind of over delivered. I was surprised,” she said.

The most common triggers for asthma are respiratory infections, weather changes, pollen and dust, but it can be difficult to narrow down what factors in a home exacerbate those triggers. For example, dirty A/C vents, dusty ceiling fans and leaky sinks are all commonly overlooked household issues that can make asthma worse. A large part of the Healthy Homes program is educating families on how to identify and clean those problem areas.

Angelaka had done plenty of research on her own about how to help her son’s asthma, but he still often had flare-ups that sometimes led to hospital visits. The mother of three is a full-time graduate school student, and Gaites’ asthma and hospitalization were hard for the entire family.

To help with Gaites’ breathing, Angelaka bought an air purifier, cleaned the house frequently, monitored his time outside when the weather changed and tried to track his triggers. So when Cantu from Healthy Homes called to talk to her about asthma, Angelaka wondered what the community health worker could tell her that she hadn’t already looked into herself.

But Cantu did not just dump information on Angelaka; she asked her questions. Through the program’s opening assessment, Cantu and Angelaka were able to figure out what she was already doing and what other resources could help further. Then, Healthy Homes provided those resources.

For example, Cantu taught Angelaka how to make her own cleaning solution that seems to be healthier for Gaites. Angelaka used to clean with a standard, store-bought cleaner and assumed any kind of dust removal was helpful for her son. But when she switched to the other cleaner made with Castille soap, vinegar, baking soda and hot water, she noticed he seemed to be coughing less.

Similarly, Angelaka didn’t realize that not all air purifiers clean the air in the way her son needs; Jones recommended an air purifier that has both a carbon and a HEPA filter. Healthy Homes gave Angelaka this more powerful air purifier, which she said has made the biggest change.

“I can’t explain enough the difference the air purifier makes,” she said. “It has definitely made a difference to me. When he’s in here, he’s playing, he’s not coughing, not sneezing. When he comes in from playing in the backyard, the air is clean in here.”

The Healthy Homes’ website includes a plethora of information and tips on identifying and managing asthma triggers. 

Perhaps most importantly, Cantu gave Angelaka emotional support. Gaites is on the autism spectrum, and Cantu showed Angelaka a Facebook group for moms of children with autism. She checks in with the family about once a week and sends Angelaka info on community resources. She and Angelaka created a binder with all of Gaites’ medical information, triggers, and emergency plans that Angelaka gave to family members, babysitters and Gaites’ school.

The binder of emergency information has made Angelaka more confident that Gaites’ teachers or school nurses will be able to help him if he has a flare up. That sense of security has made it easier for her to focus in classes, because she’s not constantly worried about him.

“When you’ve exhausted all your other resources that you may know on your own to do, it's good to have a program like this that helps you find resources…so that you can be more proactive instead of reactive with those asthma symptoms,” Angelaka said.

Healthy Homes is intentional about providing that all-encompassing support for families, Jones said. Aside from providing families with supplies, the program can provide resources for financial support and other basic needs. Community health workers give parents information about all kinds of community resources, not just those related to asthma. And with monthly check-ins throughout the three-month program, community health workers help families feel less isolated.

Beyond the initial improvement in child’s asthma, community health workers want families to be empowered to continue that care for the rest of their lives.

“We encourage our parents to be advocates for their child,” Jones said. “We want to be able to empower those parents to find ways to eliminate those triggers and to make sure everyone that's in contact with that child is on one accord.”

About 9% of the children in Cook Children’s eight-county service area have asthma. While serious, asthma is manageable.

For families who don’t qualify for the full program, Healthy Homes mails out information that includes a link to the Healthy Homes website. The website has videos on common asthma triggers and medication methods, as well as downloadable booklets available in nine languages.

For families like Angelaka's, the Healthy Homes program can mean all the difference for kids with asthma. On average, families who go through the Healthy Homes program have a 75% decrease in the number of emergency room visits, according to Healthy Homes’ data. In the six months since Gaites completed the program, he has not been to the emergency room at all.

This is a change, his mom said, from the two visits per year he has had since he was 2 years old.

Angelaka said she’s glad that Gaites and his siblings can focus on just being kids instead of worrying about being sick.

“Because he likes to run, he likes to run and he likes to jump. And that means a lot to me for him to just be happy and to just play without worrying,” she said.

If your child has asthma, you can check out Healthy Homes website for resources on identifying and managing asthma triggers.

Blue and green slime took center stage at Cook Children’s as employees, volunteers, patients and families gathered to give their doctors a messy “thank you.”  Based on votes from peers and patient families, participants braved 37 buckets and more than 10 gallons of slime. The “green-slimed” winners walked to the pully to celebrate being named the “People’s Choice” and received an extra bucket of slime.

More than 25 participants across eight categories - including family support services, doctors, nurses, child life specialists, social workers, advanced practice providers, volunteers, and members of our administrative team - donned their best outfits to find out who would be the “People’s Choice” for a green-slime bath. 

Congratulations to the winners:

Family Support Services:

Katie Campbell, Director of Family Support Services

Nurses:

Aly Anthony MSN, RN, CPN

Advanced Practice Providers:

Dani Harrington, MSN, APRN, CPNP

Administrative Staff:

Matthew Carroll, M.D., Vice President, Associate Chief Quality Officer

Volunteers:

Ted Taylor

Social Workers:

Christina Reed, Director, Neighborhood Health Centers & Out-patient Psychiatry

Wild Card:

Bryan Pyrc, Physical Therapist, DPT

Physicians:

Taha Muntajibuddin, M.D., Cook Children's Hematology and Oncology Center

Cook Children’s has six negative-pressure rooms to care for children with the virus. Rooms have space for family members and specialized air ventilation systems that pull air inward, preventing recirculation.

Dr. Whitworth hopes the rooms will not be needed.

“If everyone gets vaccinated, we won’t have this crisis,” Dr. Whitworth said. “This is preventable.”

Read the full story here.

Watch Dr. Whitworth's interview here.

Alice Phillips, M.D., medical director for Abulatory Quality at Cook Children’s, said families can protect their babies by making sure everyone else is up to date on their immunizations.

“It’s very similar to advice we give them for other vaccine-preventable diseases. We want to cocoon that baby in protection,” Dr. Phillips said. “That’s what’s so critical for families and for the community to understand about vaccines: What we all do protects those infants who can’t get vaccinated yet.”

Read the full story here.

"There's really no reason why we should have to go through this again," said Dr. Morrow. “We're all really sad about it, we're really, really concerned because we've done this already."

She's been with the health care system for 38 years and was around in 1989 when a measles outbreak impacted the entire state.

"I ended up with about about 9 or 10 children with measles," recalled Dr. Morrow. "Every child that I diagnosed was admitted to the hospital."

The current outbreak and the news of a school-age child dying from measles in West Texas has many parents calling Dr. Morrow's clinic to check their kid's vaccination status, she said.

"Get vaccinated. The vaccine is extremely effective. It's one of the most effective vaccines that we have in our armamentarium of protected kids," said Dr. Morrow.

Read the full story here.

Measles is "probably the most infectious contagious disease on the planet," said Dr. Whitworth.

"We know that about 40% of kids under the age of five who get measles are gonna wind up in the hospital, and nobody wants that," Dr. Whitworth said.

Read the full story here.

Cook Children's and Texas Health Resources share a child care center known as Kids' Place.

Kids’ Place allows parents like Anne Kirk, M.D., a pediatric hospitalist and medical director for quality and safety provider education at Cook Children's, to work and know their children are safe and nearby. The center provides flexible hours, a crucial benefit for health care workers with unpredictable schedules.

"I think because they cater to nurses and physicians, they kind of understand our lifestyle a little bit better. They, I think in some ways, are just kind of more understanding of our intense schedules... (which) makes me feel more comfortable leaving my kiddo," Dr. Kirk said. "I think being a first-time mom, I was very anxious about being away from my baby, and having him just across the street has helped me mentally so much to not be nervous and worried about him. So it's really worked out amazingly for us."

View the full story here.

“Instead of growing straight, it starts to grow in a more curved way, so that your leg becomes bowed out to the side,” said Dr. LaMont, one of the surgeons involved with Smith’s care.

Dr. LaMont said the best option for Smith was to have his left leg intentionally broken, with pins inserted into the bone to help straighten his leg over a matter of months.

Smith had the surgery immediately following his junior season at North Crowley High School in Fort Worth.

“It definitely taught me to just never take anything for granted,” Smith said. “And it really taught me that I can do anything I put my mind to.”

View the full story here.

It was a typical day for Christina and Craig Sadberry and their 11-year-old son Bryson when they took him for a March 2022 appointment at Cook Children’s. As part of their routine, they always stop by the Cook Children’s replica LEGO display and look into the Sparklefly Recording Studio at the Child Life Zone where patients can sing, record, and play music. For the first time, they saw someone inside the studio: Recording Studio Producer Raymond Turner was playing the keyboard.

“I would like to meet that guy,” Craig said to Christina.

Little did Craig know that within just an hour later, his wife and the intriguing piano man in that studio would both read messages that would change their lives forever.

For Christmas, Turner’s wife, Maria Turner, gave him a 23andMe kit because Raymond wanted to know which countries in Africa he was from and he hoped to visit one day. He said African people would randomly ask if he was from Cameroon, but his 23andMe results showed that he’s from sub-Saharan Africa, west Nigeria and Ghana. Raymond was thrilled to learn something about his ancestry, not knowing he was about to uncover a more surprising connection with someone who walked the same Cook Children’s hallways as he.

According to 23andMe, Raymond had a “familial match, sibling.” That match’s name? Christina Sadberry. The same Christina Sadberry who, unbeknownst to him, had peered into the studio that very day while he was playing the keyboard.  

A few days earlier, Raymond had messaged Christina on 23andMe. Her 23andMe profile said she had not been active for a few months. 

“I said in the message, ‘I don’t even know if you will want to reach out. This is really strange, I know, but regardless I hope you and your family are doing well,” Raymond said.

Raymond said he kept checking 23andMe and there was no activity from Christina. A few days later, Maria “Facebook stalked” Christina and found out that they had a mutual friend. Maria asked the mutual friend to talk to Christina and let her know to check her Facebook messages. 

The very next day, Maria and Christina were messaging each other, and Maria told her that Raymond’s results showed that she was his sister. They became Facebook friends and Christina saw Maria’s pictures of the family. She clicked on Raymond’s profile.

“Wait, your husband works at Cook Children’s?” she messaged Maria.

“Yes,” Maria said.

“Was he wearing a red shirt today?”   

The realization that Christina had set eyes on her long-lost brother the very day the connection was unveiled brought Maria to tears. She was driving and had to pull over on the side of the road to collect herself. She called Raymond to share the news.

“Wednesday was the first time we saw somebody in there,” Christina said. “We probably walked past you a billion times.”

Raymond said it had been a frantic day because his ID badge broke and he had computer issues, so he was in the studio for brief windows of time. It was in one of those fateful moments that Christina and her family passed by.

All these years, the man in the studio across from the LEGO set was her half-brother. An extension of family. Family that she never knew she had.

“We talk now about how grateful we are to just be a part of not only God’s bigger story of reconciliation but thankful we have found each other and just we are in each other’s hearts even before we physically met each other,” Raymond said. “Our hearts knew that the other was out there and were still kind of searching.”

Raymond joined Cook Children’s in December 2015 and Christina started bringing her son, Bryson, for his treatments starting in spring 2015. Christina is in the U.S. Air Force and lived in multiple places before she and her family moved to Keller. In the past seven years, it’s likely they passed by each other at Cook Children’s, not knowing they were brother and sister, and not knowing the other existed.

“There are no accidents in this world,” Raymond said. “I hope that if people realize anything through this, it’s that yeah there are moments in our lives that we consider to be serendipitous, but when you put all of these things together when we recount all of this, there’s no way we could have planned this, could have scripted this. This was a divine appointment, this was on God’s timetable and it was at the right moment.”

Reunion

On Friday, March 25, Raymond and Christina met in person at the Atrium of Cook Children’s and brought their families along. Raymond and Christina wondered how they would be received and were anxious about what would happen.

All of that fell away when Christina walked through the door and they hugged with tears rolling down their faces.

“Oh, man. I never would’ve expected it,” Christina said after they embraced each other. “I don’t even know what to say. Just seeing you, I’m speechless.”

Raymond said it felt like there had been no lapse of time.

“That’s probably the best way I can put into words is it was like this immediate feeling ‘this is blood,’” Raymond said. “It felt like home. It was like I was hugging the sister I had known all my life.” 

Their spouses and children witnessed the moment they had all been waiting for and met each other.

“You’re a missing piece of his puzzle, too,” Maria said.

For the special meeting, Raymond and Maria’s eldest son, Isaiah, 17, who has his own design and printing company, created two T-shirts with the words “Cousin Vibes” on the front. Their youngest son Elijah, 9, wore one and gave the other to his cousin Bryson, who put it on over his hoodie, beaming a huge smile.  

The families sat down and talked about how they reconnected with each other.

Craig talked about the moment that Christina read the message on Facebook. She was crying and shaking; her husband asked what was wrong.

“I think I found my brother,” Christina told him.

Reconnecting

These days, Raymond and Christina are in constant communication, asking each other their favorite colors, and favorite Blue Bell ice cream flavors.

“There are some eerie similarities,” Raymond said. “We both liked Cookies ‘n Cream ice cream growing up and then switched to Butter Pecan in our 20s.”

Christina gained a sister-in-law and two nephews, and Raymond gained a brother-in-law, two nephews and a niece.

From March until the first week of July, Christina and Raymond lived 45 minutes apart and the families spent time together every chance they could, celebrating birthdays, holidays, sporting events, and dinners at least once a week.

Before meeting Christina, Raymond knew of his two younger brothers and one other younger sister.

Christina was adopted and grew up with a small family of her adoptive mom, dad and two brothers. She had been searching for her biological family members since 2006 when she signed up for 23andMe. During that time, her 23andMe inbox remained empty.

She said that her biological mom told her that she was a secret. There was no doubt in Christina's mind that Raymond was her big brother. Her adoption paper confirmed information that only Raymond could know.

“This right here is nothing I expected,” Christina said. “It can only go up from here. It already feels like family.”

Raymond and Christina talk about growing old together, too.

“She said we’ll be going to the park to sit and feed the birds together,” Raymond said. “There were all these years that we missed, but we believe there will be more years ahead to get to know each other than the ones, and I won’t even say, lost, which were preparing us for this moment and to appreciate what we have.”

In early July, due to a reassignment with the Air Force, Christina and her family moved to Florida, but the Sadberrys and Turners still text and FaceTime as often as possible. They are looking forward to their first Thanksgiving together at the Sadberrys’ new home in Florida.

Raymond and Christina still have some reconnecting to do with other family members, but Raymond says they are grateful and realize that these moments don’t happen for everyone.

“It happened at the appointed time, at the right time and it just blows my mind,” Raymond said. “It’s just God’s timing in all of it and all the things. I believe things in heaven and earth had to move for all of those things to move at the right time, in the right place.”

Media partners: If you are interested in telling this story, please contact Public Relations Manager Kim Brown at Kim.Brown3@cookchildrens.org or at 682-885-1080, 817-266-3728

“When I first met Tyler and his mom, they let me know how important football was to Tyler,” LaMont told ESPN. “Had Tyler not had surgery, he would have been at higher risk for degenerative knee conditions to occur earlier in life and possibly shorten the time he could play football.”

Read the full story here.

By Daron Aldridge

For Heather Giattini, RN, Cook Children’s holds a special place in her heart. Less than two years ago her two-and-a-half year son, Brooks, had his first open-heart surgery to address his aortic stenosis (a narrowing of the heart’s aortic valve). It was then that she witnessed firsthand the power of the love and caring Cook Children’s staff and physicians give to their patients and families.

Even though she was a nurse in the adult hospital world at the time, she no more got home from discharge, looked at her husband Matt and said, “I HAVE to work there!” The opportunity finally presented itself and Heather joined Cook Children’s as a cardiovascular surgery nurse earlier this year.

Her desire to work here is simple. She explains, “I wanted to be a part of making people feel the way they made me feel. From our doctors – Dr. (Vincent) Tam and Dr. (Lisa) Roten – to the entire staff that took care of us, it was all amazing. This is where I knew I belonged.”

It wasn’t just Heather who belonged here. As fate would have it, following a recent routine checkup with Dr. Roten, his parents were faced with the reality that a now 4-year-old Brooks would need another surgery. Even though they had hoped it would be years before he would need another surgery, Heather and Matt found solace in the fact that they knew Cook Children’s was the place Brooks belonged also.

But this time, the surgery would be a little different. Thanks to organ and tissue donations and the hand-in-hand work of Cook Children’s and CryoLife, Brooks would be getting a new valve in his heart that will hopefully mean this is the last surgery this young boy will need for decades.

The tissues, like the ones that are helping save Brooks’ life, are donated by families, who have lost loved ones and want to bring joy and hope out of their loss. Through CyroLife, these donations are cryopreserved for 10 years. This means they are able to positively influence and possibly change the lives of children, who aren’t even born yet. When these families make such a decision to be organ and tissue donors, they truly do “Donate Life.” Please visit donatelife.net to learn more about the life-saving importance of the selfless act of organ and tissue donation.

To celebrate the monumental impact such donations can have on patients, Brooks is the first proud recipient of the Donate Life: Recipient pin from CryoLife. The pin, along with similar pins that surgeons and nurses wear, are a quick way to show the world that organ and tissue donations can save lives.

As Brooks’ dad Matt said, “Most people think about the large organs when they think about donation but tissue donations may be small in size but can have a huge impact on lives.”

Ryan, 10 years old, wondered if he would ever get the chance to play the game he loves so much after a rare neurological movement disorder call dystonia changed his young life. He went from being a rough and tumble multi-sport athlete to using a wheelchair to get from class to class in his elementary school.

Ryan became the 100^th patient at Cook Children’s to receive deep brain stimulation(DBS) surgery on Monday, Nov. 30, 2015. The surgery was performed by John Honeycutt, M.D., Cook Children’s medical director of Neurosurgery.

Nearly two year later, it’s hard to imagine this little boy once struggled to walk or hold a pencil in his right hand. The successful DBS surgery has brought him back to the normal the Conder family knew before DBS robbed him of his childhood for more than a year.

“I’m the happiest mom in the whole wide world,” Kayla, Ryan’s mom, said. “When he first got diagnosed we were shocked and it was really hard because we had to have help with almost everything. But now he doesn’t need help or want help. I’m just so excited and really amazed. I’m very thankful because he’s like he was before.”

Last year as Ryan his family wait out in the lobby for their appointment, Dr. Honeycutt happens to walk by on his way into the Jane and John Justin Neurosciences Center. After a couple of steps, he realizes who he has passed and stops in his tracks. He comes back to say hello and marvels at the success of Ryan’s surgery.

“It’s a modern medical miracle,” he tells Kayla.

Then it’s time for a visit with Warren Marks, M.D., a neurologist and medical director of the Movement Disorders and Rehabilitations Programs at Cook Children’s. He sees Ryan every three months.

Ryan spent significant time with Dr. Marks before and after surgery at the Cook Children’s Motion Lab, which is equipped with technology that enables a specialized team the ability to analyze the unique movement of each individual patient and plan a treatment plan for them.

Ryan goes through a routine checkup with Dr. Marks. Then they go out to toss a rubber ball to each other. Dr. Marks leaves the game for a bit and gets a reflex hammer that he uses as a make-shift bat. They are having fun and both are in a great mood.

“This is so rewarding. This is why you have a DBS program because you get kids like this," Dr. Marks said. They come back to being completely normal kids. They come back to doing everything they were doing before the surgery. Everything they want to do. It’s perfect.”

Ryan has been cleared to play baseball, basketball and at recess. He’s not allowed to play contact sports like football or soccer. But he does take his football to school to play catch.

His friends call him the robot because of the surgery that includes two battery-operated pulse generators, much like pacemakers, implanted near the collarbone. Ryan doesn’t mind the nickname at all. He kind of enjoys it.

He shows his friends a video Cook Children’s made as it followed Ryan toward his surgery last year. And what do they say?

“They are like, ‘Wow. It’s amazing what modern technology can do these days,” Ryan said.

Did we mention he’s a really funny kid? Even during his worst days, he maintained his sharp sense of humor. But now the smiles come much easier to everyone in the household and even the tears aren’t so bad lately.

“When he was looking at the video the other day, every time I watch it I cry because I get to see where he was and where he is now,” Kayla said. “It’s not crying because I’m sad. It’s crying because I’m happy. I tell him, ‘Ryan I love watching it but it makes me cry.’

Kayla noticed something was wrong with her little boy around September, 2014. She noticed Ryan running differently than normal during one of his baseball games.

When asked what was going on, Ryan said he couldn’t help it. Then after noticing that his toes on his right foot were curling in, Kayla took her son to the family doctor.

Kayla remembered she had cousins who had dystonia and called her aunt to talk to her about it. After the conversation, Kayla arranged a referral to see Dr. Marks.

Dr. Marks commented that Kayla reminded him of someone and then as they talked, he found out that one of her cousins was not only a dystonia patient, but the first one that Dr. Marks treated at Cook Children’s who had deep brain stimulation surgery performed on her. The surgery was done 15 years ago before Cook Children’s began its own DBS program.

After an initial diagnosis, Dr. Marks verified that Ryan had a genetic version of dystonia.

Dystonia is a disabling disease and sometimes painful condition that limits children in many ways, impacting motor, cognitive and social development. Because medications have a limited effect on most forms of dystonia, Cook Children’s began a Deep Brain Stimulation Program of its own in 2007.

Kayla admits to being scared and nervous at the unknown of surgery. But after talking to Dr. Marks and his team, she hoped this would be a fresh chance for Ryan to return to the little boy he was before dystonia began to take over his body.

Ryan walked with his right foot on his toes and his right arm is now curled in, making it difficult to use. She hoped for Ryan to be able to walk and run like before, but also to use his right hand to write. He had to dictate his work at his elementary school.

Kayla said the hardest part was watching the things Ryan could do and how active he was, playing sports and being a typical little boy, to where he needed help walking, taking a shower or cutting up his food.

But that was then. Now Ryan is back to being the fun-loving, sports playing, ornery little boy he was before the surgery.

“The best part of all this … he’s right there,” Kayla said pointing to Ryan. “He’s walking, running and jumping. He’s able to take care of himself. No parent ever wants to see their child go through what Ryan went through. But hands down, we got more than we ever imagined.”

Learn more:

• What Is Deep Brain Stimulation?
• What Is Dystonia?
• The architect: Warren Marks, M.D.
• The surgeon: Helping kids like his own
• Cook Children's Motion Lab
• Cook Children's Movement Disorders Program

Other than the commemorative labels on them, nothing about these two bricks stands out too much. That is until you sit down and spend time with Bobby Moore.

Then you will learn that Moore, who is 68 years old, plans to pass on one of those bricks to his daughter and the other one "will be in the casket with me."

So why would two old, dusty bricks mean so much to a man?

Because they once held up the building then known as Fort Worth Children's Hospital and it was there where corrective surgery saved him from a life in a wheelchair.

Moore was born in Alvarado, Texas at Dr. John Falk's medical clinic. Shortly after his birth, Moore's parents were told there was something wrong with their son's legs. Dr. Falk helped to schedule an appointment with Cuvier Lipscomb, M.D., an area surgeon and one of the founders of the Fort Worth Bone and Joint Clinic.

At 18 months old, Moore began seeing Dr. Lipscomb. Dr. Lipscomb tried braces, corrective shoes and Moore says "just about everything you could think of" to help his legs get better.

"I was extremely pigeon toed. Evidently the bones weren't developing below my knees," Moore said. "When I was about 12 years old, I was having lots of problems. Dr. Lipscomb said, 'I've done this procedure on a boy from Weatherford and it helped him a lot. I think it's something we need to do on you because if we don't, by the time you are 20, 25 years old, you aren't going to be walking."

Dr. Lipscomb went in below the knee, cut the bones and rotated Moore's feet until they were straight. He placed a cast on both of Moore's feet from the tips of his toes to his waist. He wore that cast from May 31 to Oct. 1.

Moore was wheelchair bound at that point. He and his family lived across the street from the school. He remembers kids bringing his books and homework to him every day at the end of school and then picking up his work the next morning.

In October, the casts came off of Moore. He went through physical therapy and started school on crutches. In February 1964, Moore went back to Dr. Lipscomb for another surgery. This time, staples held the bones together and kept them straight. Those staples are still in there to this day.

Moore couldn't play sports because of his legs, but he worked through high school and all of his adult life.

"You miss a lot, just not going to school my eighth grade year," Moore said. "I only made two six week periods the whole year. But with the help of the other students bringing my books to me, I was still able to pass my eighth grade year doing that."

Moore said he was too young to realize the serious nature of his condition.

"My brother tells me he can remember when we would go see Dr. Lipscomb," Moore said. "He remembers telling my dad, 'This kid won't walk by the time he's 15 years old if we don't do something for him.'

"What they were saying really didn't sink into my head. Even while I was sitting there with casts on my legs. I really didn't realize what was going on. The gravity of it all. But I'm very thankful there were people like Dr. Lipscomb who took the initiative and cared for patients."

Perhaps the moment that hurt Moore the most occurred when he was drafted to join the military. He went to Dallas for a physical, but was rejected because of his legs. Moore went to Fort Worth to have Dr. Lipscomb send paper work to explain the scars and how he thought he could hold up to military life. But he still was not accepted.

Moore knows without Dr. Lipscomb's care, he would probably be in a wheelchair by now.

"As a matter of fact, when I was 18 and the Army turned me down, Dr. Lipscomb told me, "Let me put you on 100 percent disability because I don't think you'll ever be able to work, using your feet and legs very much. He didn't realize how good a job he did on them. Up until 2004 when I started having knee problems, I hadn't had any trouble with them at all.

I was an auto mechanic for 15 years and I worked at a nuclear power plant for 34 years before I retired."

It's funny the things that stick with someone 50 years later.

A glimmer returns to Moore's eyes as he remembers the names of the other patients at the hospital. He also remembers his trips through the underground tunnel from the Fort Worth Children's Hospital to Harris Hospital for X-rays and physical therapy.

However, not all the memories are fun.

"The worst part was trying to recover," Moore said. "It wasn't necessarily the physical part of it, but the self-confidence part of it. You go to a ballgame and you see all these kids playing ball. You have to get up on a pair of crutches to walk, trying to get out of the building and you wonder if people are watching. Are they looking at you? I've always been self-conscious about walking because you don't ... I'm just very lucky that Dr. Lipscomb was the man that he was and the doctor that he was that got me through everything."

Today, Moore speaks with pride about his time at Fort Worth Children's and the part his family has played in the Cook Children's legacy.

His daughter Kim Epperson is the director of Telehealth at Cook Children's and his granddaughter Ashley has been a patient at Cook Children's and interned at the medical center during the summer.

"I'm very proud of Kim," Moore said. "When she first told me she applied to Cook Children's, I told her that's a good place to go because people like you can make a difference. When you are dealing with children and people that are scared and don't know what's going on, you need someone like Kim that cares about people and wants to make a difference. I'm very proud of her for doing that at Cook Children's."

Epperson said it wasn't until she was older that she realized what all her dad went through as a child. He and her mom, Janelle, were the parents she still strives to be every day. Moore was the softball coach and always outside playing with his kids in the yard.

"It's pretty miraculous to me. I think it's one of those things in your life where you make a decision. I'm either going to find the blessing in this or the curse. We've all benefitted from that generation after generation. He rides bicycles with us, his grandchildren, our children ... All the things that could have been so different, if a different decision had been made years ago."

"My dad has definitely influenced me. Before they tore down the old Fort Worth Children's Hospital, he came up one day and we went inside. He took me exactly where his room was when he was a child. He could describe the sounds. He knew that Dr. Lipscomb was coming by the sounds of his shoes (he always wore big wing-tipped ones) down the hallway. That left a really big impression on me because that's what we're still doing for children every day. To be a small piece of that puzzle is a big deal. Even though I'm not involved in direct patient care, we all have a small part to play in this experience for a child. They are going to remember what they heard, who they met and what they saw."

Epperson had other opportunities to work at other health care providers, but she wanted to come to Cook Children's enough to interview here on three separate occasions until she got the job.

"This is the type of place that transforms lives for generations," she said.

New bricks make up the walls of Cook Children's, but Moore knows the same care remains for kids today.

"There are good medical facilities all over Fort Worth," Moore said. "All over the Metroplex. But this is one of the places that really makes the differences in people's lives. They makes life-changing events for little children every day."

The new three-dimensional lab for the planning and printing of congenital heart disease (3D aPPROaCH Lab) uses advanced technology to support pre-surgical planning and family education for patients with complex heart conditions. This is accomplished through the use of both 3D virtual viewing and 3D printing. Cook Children's is one of the only pediatric healthcare facilities in the United States to combine these technologies. This cutting-edge technology allows cardiologists and cardiothoracic surgeons the ability to fully understand a patient's complex heart defect and plan their procedures and surgeries to the finest of details. It also allows for doctors to practice and perform procedures prior to the patient entering the operating room. Click here to learn more.

For most of the first 20 years of his life, Michael Jankowiak never played ball or even owned a toy. His debilitating cerebral palsy wadded his fingers into a tight fist. He barely moved his hands, except to drive his electric wheel chair.

Then, during a visit to his neurologist, every changed. During a BOTOX® session at Cook Children’s, Fernando Acosta Jr., M.D., a neurologist at the Jane and John Justin Neurosciences Center, told Michael's mother, Lynn, that a surgeon on staff could possibly make a big difference in her son’s life.

Lynn was told Pamela Sherman, M.D., performed surgeries on children with disabilities. 

The original intent of the surgery was to help children clean the palms of their hand and aimed at improving hygiene for patient with significant contractures (the permanent tightening of muscles, tendons ligament or skin that results in a loss of motion in the affected joints).

But the sides effects were, as Lynn puts it, “pretty remarkable.”

Patients who need this surgery often demonstrate limited function with the contracted limb preoperatively. Things such as the ability to trim finger nails, avoid skin breakdown in the palm or elbow and the ease of nursing care with dressing, bathing and transferring to the wheel chair are the focus of surgical intervention. 

"Placing the upper extremity in a more functional position and releasing contractures often has a wonderful added benefit of improving use,” Dr. Sherman said. “Suddenly, the patient with previously limited spontaneous use of their limb has a hand that they are able to use to push a wheelchair control, use a communication board or hold an object.  A little goes a very long way for them.”

For the first time since he was a baby, Michael, who is now 24, opened up his left hand and played with a toy. Michael even held his own glass and brought it to his mouth to take a drink.

“This surgery has given him something new with his life,” Lynn said. “He has never been able to find a toy that he could play with. We took a golf-sized rubber ball. It’s elastic and put a rubber band on it. It looks like it came out of a gum ball machine. But when he’s playing with it, he grins from ear to ear. He can now even hold the ball and drops it for the dogs to play with him.”

After receiving a second surgery on his right hand that summer, Michael could now play on his iPad. He can swipe and select different videos to watch on YouTube.

What may have seemed so routine to most families has been nothing short of a miracle to Lynn because of how far her son has come.

Lynn described her first few months after she learned Michael had cerebral palsy as “fuzzy.” She lived in a terrified blur of emotions and cried for the first year after learning of his diagnosis.

But through her tears Lynn kept her resolve, beginning with one decision – Michael would be transferred from the family home in Abilene to Fort Worth to be treated by Cook Children’s. They then moved to Fort Worth to stay closer to Cook Children’s.

“To see your baby crawling, trying to learn to walk and then all of a sudden he’s not moving, was horrible,” Lynn said. “We insisted he be transferred. If he had not gotten transferred Michael would not be alive. I believe that with all my heart. I would not go anywhere else.”

The first month he stayed in the Pediatric ICU. Since then Michael has been seen by a plethora of specialties at Cook Children’s including Infectious Disease, Neurosciences, the Heart Center, Radiology, Surgery and Rehabilitation Services for issues ranging from pneumonia to cerebral palsy.

Michael stopped moving his extremities at 18 months and was diagnosed at that time.

Mark Shelton, M.D., was the physician on-call the day Michael first arrived at Cook Children’s. Dr. Shelton, a member of the Cook Children’s Physician Network, continues to be Michael’s primary care physician.

“Dr. Shelton, even though he is a specialist, I want him involved in everything,” Lynn said. “I trust him completely. I honestly think Dr. Shelton saved Michael’s life. He’s wonderful and so is his entire staff. He has such wonderful nurses. But all of Cook Children’s has such great nurses.”

Medical Director of Orthopedic Services David Gray, M.D., has also been there for Michael through multiple operative procedures associated with cerebral palsy.

“Dr. Gray is amazing. I remember him when he joined the Cook Children’s staff,” Lynn said. “A few years ago Michael broke his femur. When the ambulance came I told them I wasn’t going anywhere but Cook Children’s. Dr. Gray wasn’t on call that day, but somehow they got in touch with him and Dr. Gray managed to be there when we needed him.”

And now even today, after all this time, Lynn believes Cook Children’s works miracles for her son.

“It’s really the entire system,” Lynn said. “Everybody works so well together. It’s one of those places. I remember how I felt from the first time I walked in at 2 in the morning. It’s just comforting. You knew you were going to be treated well and your child was going to be taken care of by everyone.”

Wilson, who’s now a Cook Children’s database coordinator working from Nederland, Texas, luckily had her home spared in the storm that left more than 60 people dead and 70 billion dollars’ worth of damage. So when she saw a post on Facebook asking for nurses to help rescue people from a nearby nursing home in Port Arthur, Texas, she knew she needed to go.

“When I first arrived, I was truly walking into the unknown. Men were bringing patients out of the building and loading them onto boats,” said Wilson.

She quickly found her place at the Port Arthur Little Theater, just down the street from the nursing home which was inaccessible without a boat. The theater parking lot was covered with tents, providing a much needed shelter and place for the evacuees to escape the 18 inches of water they’d been trapped in. Once on the ground, Wilson started doing what she always does – helping people in need.

“I was checking blood sugar and blood pressure. It was pretty scary for a number of these patients because half were diabetic and no one had eaten in over 12 hours,” she said. “The Army was flying in helicopters and planes to transport the most critical people out of the area. My role was triaging patients and figuring out who needed to go first.”

It wasn’t always easy to determine just who that was. Wilson says the patients, many of whom had dementia or Alzheimer’s, left the nursing home with just a sticky note with their name on it. Most didn’t have family members with them, and knowing their medical history was all but impossible.

“You’re putting them on an airplane and some only had a sticky note with their name on it. Most didn’t have their medications with them, no one had had their medications at all that day,” said Wilson.

At one point, the PICU nurse accustomed to treating pediatric patients in a controlled environment found herself with an evacuee who was having trouble breathing. She started digging through equipment coming out of the nursing home and found a nebulizer. The only problem was, she didn’t have power to make it work. Instead of giving up, Wilson found a news crew van and began beating on the door. They were able to provide her an extension cord and she set up the machine right there on the hood of the vehicle.

“I don’t think I’ve ever been tested more as a nurse. There wasn’t a doctor there telling you what to do. There were more than 100 patients there and it was all hands on deck.”

Wilson says emotionally, it was one of the hardest days she’s had on the job.

“It was terrible, heartbreaking. I remember trying to get one lady out and she just kept telling me not to leave her,” she said with a shaky voice. “They were cold and wet. Many didn’t even know if they’d make it out of the nursing home. I just knew the whole time, this is someone’s family member.”

Wilson worked into the night, only leaving once she knew her help was no longer needed. The military had heavily deployed to the scene and had the situation under control.

But, of course, her helping spirit couldn’t take a break for long. The next day she made her way to the airport where evacuees were being put on planes and sent to shelters across the state. She joined a group of volunteers sorting donations. That’s where a young mother approached her with a donation that pulled at Wilson’s heart.

“She handed me bedding she had saved off of her child’s bed and said ‘I guess I have to donate this.’ That was particularly hard because the evacuees could only take a 50 pound bag with them. Everything that family had left was in that bag, but there wasn’t room for the child’s bedding.”

Later that day, she returned with food for the first responders. Then, she volunteered her time at the Methodist church.

When asked why she did all that she did, Wilson said she just needed to.

“My house didn’t flood. I was lucky. So when I saw all of those who weren’t as lucky, I felt like I needed to go and do something.”

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

"This is my third month here at Cook Children’s. My husband is a veterinarian and we are both very involved with Children’s Advocacy of Johnson County, so our kids have soft hearts for animals and children! Needless to say, when I accepted the job here the kids were thrilled! About a month ago, I noticed my son and daughter were working diligently at making paper airplanes. Not just one or two, but about 30 of them. I didn’t think much of it at the time other than I was going to have a huge mess to clean up. However, they were not just making them, they were decorating them as well.

After a few days, I finally asked what they were up to and they responded that they were making paper airplanes to sell and raise money for Cook Children’s. Of course this was a sweet thought, but I didn’t think much would happen from it. A week went by and they went to my parents for a week in San Antonio with the paper airplanes in tow. They were determined to set up a booth and “raise money for the children” they said. So, that’s what they did but they didn’t stop there. When they returned home, they sold more paper airplanes at my husband’s family’s house the following week.

Raising the money, however, was not enough for them. They also wanted to deliver the $40 they collected to the hospital themselves. I got in touch with Cook Children's Health Foundation and they not only set up a meeting and accepted their donation, but gave the kids a tour of the hospital and explained the different places their donation could go.They were able to meet Journey and hear about the five therapy dogs in the Sit ... Stay ... PLAY program, as well as learn about CARPE and the Pastoral Care Prayer Bears.

The kids could not pick just one so they donated to all three causes. They enjoyed Journey so much that they made a stuffed Journey at Build-A-Bear and donated her to Pastoral Care.

The experience impacted them greatly and my daughter will be participating in the Peter Pan Birthday Club in November. They are continuing to make paper airplanes, dog costumes, and yogurt sandwiches for their next event to continue to raise money for Cook Children’s."

His mom, Crystal, will be the first to tell you her little boy is just "a really cool kid."

Before Waylon could receive the heart surgery he so badly needed, his parents learned their surgeon was leaving the area. The Guidrys were suddenly faced with uprooting from their home in Fate, Texas (Rockwall County) and taking their very sick 6-month-old son out of town for surgery, most likely to either Houston or Chicago. Waylon was born at 27 weeks and 3 days with a rare heart condition called Tetralogy of Fallot, which creates obstruction to blood flow to the lung and is associated with a hole between the pumping chambers of the heart .

As they considered their options and prepared to pick up their lives, the phone rang one afternoon. It was Waylon’s cardiologist to tell them a new heart surgeon, Vinod Sebastian, M.D., would take on the case at Cook Children’s Medical Center in Fort Worth.

“Jordan and I didn’t know what to do,” Katie said. “We researched our options and we just couldn’t make up our minds. When we got the phone call, we were so relieved. Dr. Sebastian received all of Waylon’s history and was confident he could repair the Tetralogy of Fallot with one surgery and also spare his pulmonary valve, which traditionally has to be cut open and resected during this repair.”

The family arrived at Cook Children’s on Nov. 28, 2016 and Waylon underwent heart surgery on Dec. 14. Tetralogy of Fallot is a rare heart defect that occurs in about 5 out of every 100,000 babies.The surgery is a complicated one because the congenital heart disease results in four main congenital heart defects:

• Ventricular septal defect (VSD)
• Override of the aorta over the VSD
• Right ventricular outflow tract obstruction
• Right ventricular hypertrophy

ifelong monitoring is required due to the increased incidence of arrhythmia, exercise intolerance and reduced right ventricular function.

Often times when the surgery is performed, surgeons cut open and resect the pulmonary valve in the baby’s heart. If that happens, it usually means a heart surgery later in life to replace the valve. That was not the case for Waylon.

“As far as Waylon’s heart, his long-term prognosis is excellent,” Dr. Sebastian said. “Waylon is unlikely to need any further cardiac surgical intervention. In the past, Waylon’s condition was incurable. Even 10 years ago, the surgical repair routinely involved cutting open and resecting the pulmonary valve. His heart surgery is very gratifying because his heart problems are no longer an issue.”

Waylon and his family will face other non-cardiac health issues in the future, but for now the family feels very fortunate to have found Cook Children’s and Dr. Sebastian.

“He’s doing great now,” Katie said. “We are so grateful and blessed for having this opportunity to come to Cook Children’s and for our son to receive all the help he needs."

Waylon has been at  home now for more than two months and Katie is busy planning his 1 year old birthday party on May 30.

About Dr. Sebastian

Vinod Sebastian was born and raised in India and has pursued specialty training in the US in surgery, cardiothoracic surgery and pediatric cardiac surgery. During training he realized his passion of becoming a pediatric cardiac surgeon and the unique ability to provide life altering treatments to neonates, infants, children and adults with congenital heart disease.

He trained at Stanford University with Frank Hanley and VM Reddy in the field of pediatric cardiac surgery. During this time he trained in techniques of “single stage unifocalisation” and “extremely low birth weight cardiac surgery” at one of the largest practices in the world.

Dr. Sebastian is happy to be back in Texas at Cook Children's and providing pediatric cardiac surgery services in the Dallas/Fort Worth area.

In his spare time, he enjoys being outdoors, reading, watching cricket, tennis and swimming.

About Cook Children's Cardiothoracic Surgery Program

When it comes to your child, any kind of surgery is concerning. When that surgery is related to the heart, it can be a very frightening time. The cardiothoracic surgeons in the Cook Children's Heart Center are recognized for their skill and expertise. And, because they perform an average of 400 surgeries each year, they know how challenging it is for you and your child, and they will work closely with you to ensure you understand all your child's surgery will entail and the risks involved in order to provide the best plan of treatment. Click to learn more about the program.

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

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

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

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

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

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

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

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

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

About Cook Children's Adolescent and Young Adult Program

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

After all, not even two heart surgeries can slow down the Kansas State, and Arlington Martin grad, sprinter down.

Albus, 20 years old and a sophomore, underwent his first surgery at Cook Children’s when he was only 3 days old for a serious heart defect called transposition of the great arteries. This rare condition (one in every 2,000 U.S. babies) is present at birth and occurs when the two main arteries in the heart are reversed.

A scar remains on Albus’ chest from the surgery and he knew that it was “a scary deal for my parents,” but it never prevented him from “doing what normal kids do.” He competed in football, soccer, track and wrestling.

He excelled as an athlete, but things became scary for him during the summer between his sophomore and junior year of high school.

Every time he worked out hard in football preseason, Albus felt like he was going to pass out and he became extremely light headed. Initially, he believed he was becoming dehydrated when he exerted himself. He began drinking gallons of water.

“I thought at first everyone felt this way,” Albus said. “But it kept happening. I just started pounding water. I thought everything was going to be OK, but it didn’t get any better. I felt a pain in my chest and thought I should get this checked out. I was a little scared. I didn’t know what was going on. I believed that God had a plan though and that everything would be good once it was all over.”

After feeling a pain in his chest, Albus returned to Cook Children’s to visit his cardiologist, Richard Readinger, M.D. Dr. Readinger found that the surgery Albus needed as an infant required the arteries to be detached and then reattached. A kink was caused by one of the arteries. Dr. Readinger compares the condition to what happens to a garden hose when it gets knotted up.

Vincent Tam, M.D., medical director of heart surgery at Cook Children’s, performed Albus’ second surgery to repair his coronary artery distortion heading into the 2013 football season. Dr. Tam went through the same scar from Albus’ first surgery as a baby.

Albus needed time for his chest plate to heal in his sternum. No one thought he would return to football. Except Albus. He passed the stress test and made it in time for the end of the season.

He continued to play sports the following season and excelled enough to earn a spot on the Kansas State track and field team as a sprinter.

“I just knew God didn’t stop me from playing or competing in sports,” Albus said. “He must want to me to pursue everything the best I possibly can. Everything has turned out for the best. I just want to do the best I can be and continue to work to get better.”

Don’t try to slow Nick Albus down.

“I didn’t remember it was Christmas until we left on the 26th of December," Bryan Gutierrez said. “Everything was just such a blur during our stay. I just know we were so thankful. The whole time we were at Cook Children’s, we had a feeling we were very much in angels’ hands.”

Unfortunately, their first Christmas didn’t go as Christina and Bryan hoped after their baby Quentin was born in November 2008. Within three weeks of his birth, Quentin contracted pertussis, also known as whooping cough.

Quentin experienced coughing so violent that at one point, he stopped breathing. He was rushed to a hospital in the family’s then hometown of Odessa, where the local hospital was unable to diagnose Quentin.

The coughing progressed and there was fear that Quentin's lungs would collapse. The family felt they needed more specialized care and requested a transfer to a children’s PICU.

The Gutierrez family was presented with options on where to take Quentin and decided to go with their little boy to Fort Worth.

“When we were presented with the options, I went online to research the different hospitals,” Christina said. “I found that Cook Children’s was highly rated and recommended. After looking into everything, I knew this was the place for our little boy.”

Bryan vividly recalls the Cook Children’s Teddy Bear Transport arriving in the morning to take Quentin. He said it didn’t take long to feel a sense of relief that he and his wife hadn’t felt since their son became ill.

“At the original facility, our son would turn blue. The coughing fits were getting to the point where his newborn lungs began to collapse. The doctors had failed to diagnose him or provide a treatment plan. According to the facility in Odessa, the pertussis lab test would take a couple of weeks. As soon as we walked into Cook Children's the doctors stated, "This looks like pertussis; we see this several times a year". During his first coughing fit, the nurses at Cook Children's knew exactly how to help him. We could tell we were now at a different level of care and professionalism,” Bryan said. “Within 30 minutes of our arrival, one nurse got Quentin stabilized and comforted me, all while getting us settled in. We were in the hospital for three weeks while Quentin was given the best care. The bedside manner, level of professionalism and attention to our mindset, as anxious parents, was outstanding. Our baby boy was given a clean bill of health three weeks later and we went home as extremely grateful parents.”

Quentin received care for his lungs, cleaning them out and monitoring them. The Gutierrez family would sit in on conversations between doctors and nurses during shift change. They said that transparency contributed to their confidence that they were in the right hands.

Eight years later, Quentin is a perfectly happy and healthy boy. His parents still remember their first Christmas and are thankful for who their son has become.

“When we think back to how sick he was as a baby, we are just so happy to have him in our lives,” Bryan said. “We know every parent thinks their child is special but we think he’s going to do great things someday. He’s truly a special little guy with a big heart and extremely smart. He does very well in school. He was doing an exercise at his elementary school in Flower Mound and he drew himself as president. He said the biggest thing he would do as president is be kind to everybody. I think that exemplifies what kind of child he is and proves when he was sick as a baby, it just wasn’t his time. We thank God, and Cook Children’s, for that.”

About Cook Children's PICU

The Pediatric Intensive Care Unit (PICU) at Cook Children's Medical Center cares for children with life-threatening illnesses or injuries. On-site 24 hours a day, seven days a week are two physician specialists (board certified in pediatric intensive care or board certified pediatric cardiologist) and a nurse practitioner trained in pediatric intensive care. Specialty physicians, such as neurologists, pulmonologists, oncologists and cardiologists, are available for consultation or referrals. Click to learn more.

Today, Dr. Marks looks back at that time as “an interesting diversion,” but it really helps explain who the man really is. After all, he’s built one of the nation’s most highly successful comprehensive clinical centers for pediatric movement disorders.

Dr. Marks, who is one of the first two Endowed Chairs at Cook Children’s, has molded a program where Cook Children’s deep brain stimulation serves as the centerpiece.

Most recently, Dr. Marks has seen the end of years of work with the addition of Cook Children’s Motion Lab, which sees children, teens and young adults who have a variety of complex movement disorders, including cerebral palsy, dystonia and traumatic brain and spine injuries.

He just keeps on adding to a legacy where he has brought together the most advanced technology with a kid-friendly atmosphere.

When he was a kid, Dr. Marks loved science and became fascinated with the brain and how it works. When he entered Texas Christian University, Dr. Marks considered a career in chemistry, earning a Bachelor of Science degree from TCU, and then he took that year to pursue architecture.

But once he entered Texas Tech University School of Medicine, Dr. Marks’ life’s work began to take focus. During his training he returned to studying the brain and found he had no choice but to make his career helping children.

“I always liked it that if you are going to do pediatrics, you know it up front,” Dr. Marks said. “If you look at the personality inventory of pediatricians, they don’t look like the rest of the physicians, they look like social workers. I talk to medical students when I have them over at the office and the ones that are going to go into pediatrics have no doubt that’s what they are doing. The ones who have hesitation about it are usually not destined to go into pediatrics.”

Dr. Marks joined Cook Children’s in 1988 and today serves as the medical director for the Movement Disorder and Neurorehabilitation Program.

Dr. Marks said he loves the multidisciplinary approach he finds at Cook Children’s, often working directly with rehabilitation therapists, orthotists, neurosurgeons, orthopedists and others. He has developed several multidisciplinary rehabilitation teams, including the transitional care unit, and specialized multidisciplinary clinics that have been developed for children with spasticity, movement disorders, and neuromuscular disorders.

“You have different people coming from different backgrounds,” Dr. Marks said. “Everybody’s perspective is different and we are all bouncing ideas off one another. It’s one of the great things about Cook Children’s.”

Dr. Marks said that team approach creates better care for patients. He said the goal of the neurology team at Cook Children’s is not just to treat children or find a quick fix, but to make their overall quality of life better. He calls this an exciting time for the Neuroscience Program at Cook Children’s, exploring new and innovative approaches to complex patient issues such as movement disorders and epilepsy.

“We are doing as much as anybody and more than most in the country when it comes to improving children’s lives,” Dr. Marks said. “We continue to expand our offerings. We continue to push the limits of treatment. In the future we will have the ability to treat more children and more complex neurological diseases and make them even better. I’m really excited about our ability to bring these new and innovative approaches to solving some very complex issues.”

During his tenure, Dr. Marks remembers fondly certain patients and how to see their lives dramatically impacted. He recalls sisters he treated who went from being bed ridden to being in wheel chairs to dancing at their senior prom and eventually getting married, leading normal and productive lives.

“Those are the stories you look back and say, ‘Man was I lucky.’ You found the magic key for those kids.”

As Shea Ingram makes her rounds up and down the halls of Cook Children’s Medical Center, she pulls behind her a red wagon filled with musical instruments, from guitars and ukuleles to pianos and drums. Ingram is one of two board certified therapists who use the art of music as a way of healing.

“I like to talk about the role of a music therapist as using music to achieve non-music goals,” said Ingram. “Everybody has some sort of relationship with music, but what makes music therapy different is the relationship between the therapist and whoever they’re serving. We are targeting specific goals and we’ve been trained to use the tool of music in order to achieve those goals.”

Ingram has nurtured the music therapy program since its inception nearly a decade ago. The program falls under CARPE, the Creative Artist in Residence Programme at Cook Children’s. This program, made possible solely by donated funds, gives kids the freedom to express themselves through various creative outlets such as music.

“We know that music can be utilized in a lot of different ways,” said Creative Arts Program Coordinator Carri Ann Wantuchowicz. “It certainly can help reduce stress and anxiety and is also a form of expression if kids want to talk about the music and the lyrics of songs that they like. That’s one way a music therapist can enter into their world and get to know them. They’re also welcome to write music and express themselves that way and record things here, so I think there’s a lot of different ways it can be utilized.”

In addition to the music therapy program, Cook Children’s houses a complete broadcast and recording studio for patients and their families. Recording studio producer Raymond Turner sees the way music helps these families every day.

“We have patients who come down here and this becomes a very therapeutic space for them,” said Turner. “It’s amazing to see the transformation when they come in here and get their hands on an instrument they know or something they’ve always wanted to play when they’ve never had a chance to touch anything like that. It’s pretty amazing.”

The recording studio is a unique space in that it allows the whole family, not only the patients, to connect with music in a way that is meaningful to them.

“What really surprised me is seeing parents connect,” said Turner. “I think that really shows the lifeblood of this place, that it’s not just about the kids and their siblings, which is really the focus and what it was intended for, but the unexpected response we’ve had from parents who come in has been incredible.”

Music’s ability to heal reaches people of all ages, from the smallest babies to fully-grown adults.

“So whether it’s a premature baby that can benefit from some gentle stimulation or if it’s a young adult who would actually benefit from writing and recording something, we try to provide all those different opportunities for them here,” said Wantuchowicz.

Ingram believes her role as a music therapist is as more of a facilitator between the child and the instrument than between herself and the instrument.

“A common misconception is that I’m going into these rooms and performing for these kids,” said Ingram. “Obviously there are times when that is appropriate, but I prefer to get them engaged in making it and participating in it physically, so that they’ve got something that they’re doing rather than just sitting there listening to me.”

In the NICU, music therapists work with some babies on becoming more tolerant of positive stimulation, as opposed to the negative stimulation that they get on a more regular basis. Other babies who aren’t at that stage yet work on relaxation and calming so that their bodies can get to a more restful, at-peace state.

School-aged kids work on music making in order to get them comfortable enough to interact with people, deal with their fear and anxiety or just physically move.

“We’ll have drums and go on parade around the halls just to get their bodies moving,” said Ingram.

But for teens, fiddling around on an instrument is not quite as therapeutic as the things they might say and start sharing while they’re doing that.

“A safe place for a lot of them seems to be talking about what kind of music they’re listening to,” said Ingram, “and you start learning a lot of things about them that way.”

Turner has also witnessed the way patients use the lyrics of songs as a means of self-expression.

“For a moment, they can forget about what they are going through and be able to express something that’s really deep within them,” said Turner. “They’ll do it through music. They won’t necessarily talk to you directly, but when you hear them sing or rap or whatever the case may be, you realize there’s a lot going on inside of this person.”

Ingram says that music is a kind of therapy in disguise.

“I very rarely, especially with the school-aged and adolescent population, introduce myself as music therapy,” said Ingram. “For me, that word automatically changes the tone of a relationship. I’ve got my goals and targets in mind, but they don’t necessarily have to know that we’re doing therapy. And I think it can change the tone of the results of the situation a lot more.”

The goals and targets of music therapy differ with each child, but the reaction when a child reaches that goal is always priceless.

“I get to be present and part of the moment where the parents pull out their phones and take pictures because they’re seeing their kid look like their child again,” said Ingram. “They’re getting to see that personality and that energy come back out through the music interaction. That right there validates everything, and that happens daily.”

With all the validating moments and triumphs that music therapy brings, the program is facing a major setback.

“We can’t meet the needs,” said Wantuchowicz, “not even close.”

Ingram and the one other music therapist both hold part-time positions, so combined they only do the work of one full-time employee. According to Wantuchowicz, they are not able to see nearly one-third of their referrals.

“It’s not even getting to all the referrals or getting to see all the kids who could benefit from it,” said Ingram. “It’s getting to do better work because you’re not spread so thin. For almost ten years now, we’ve had to decide whether we serve more kids at a more basic level or do some real good work, but reduce the amount of kids that are getting services. So it’s this uncomfortable balance of figuring out where to put yourself in that.”

Kids who have the opportunity to experience music therapy at Cook Children’s sometimes discover they have hidden talents, and the music therapists get to discover that talent right alongside them.

“There have been times in my years here where I’ll sit down with a child and give them an instrument they’ve never touched before and discover that they have a gift no one knew about beforehand,” said Ingram. “So then they leave here with whatever they’ve endured for their medical reasons, but then they’ve got this new thing as well.”

The art of music is something that kids can carry with them and benefit from long after they leave the hospital.

“The goal of everything we do here is to introduce kids to things they may not have tried before,” said Wantuchowicz. “We give them those chances to try something new in hopes that they discover something they really like and want to continue doing beyond their time here with us.”

Since 2014, New Country 96.3 KSCS broadcasts live from Cook Children’s, commercial-free for an entire day, asking loyal listers for generous donations to help families and children affected by illness and injury.

The KSCS Cook Children’s Third Annual Radiothon takes place from 6 a.m. to 7 p.m. on Wednesday, Nov. 16, 2016, at the medical center. To donate, call 855-COOK-GIVE (855-266-5448).

Louis begins the radiothon day as the host of Hawkeye in the Morning.

“It’s totally different for us,” Hawkeye said. “It’s the one day where we have to be prepared for surprises and never know what’ going to happen. You never know when a kid is going to blow your socks off. What’s so neat about the day is something always happens you never expect. And at the end of the day, you just feel great. You were able to facilitate everybody in the community coming together for a great cause. I love how it feels at the end of the day.”

Hawkeye has developed a special bond with Cook Children’s. He describes the medical center as “if Disney designed a hospital this is what it would look like.”

In 2002, Hawkeye was visiting with a friend who told him about his experience at Camp Sanguinity, a Cook Children’s summer camp for hematology and oncology patients and their siblings. Hawkeye enjoyed being a camp counselor when he was younger and decided to volunteer as a counselor, as well.

From 2002 to 2006, he spent a week each year as the counselor in the oldest boys’ cabin and served on the Friends of Camp Sanguinity Board from 2004 to 2006.

“I made some tremendous friends and liked the kids so much,” Hawkeye said. “I really enjoyed working with the older kids. I have such a great deal of respect for them and everything they’ve gone through. They may have lost their hair or gone through an amputation. But at camp, it’s just so rewarding to see kids just be kids. I had someone tell me once, ‘This is the first time I’ve felt like a normal kid since I lost my leg a year ago. That’s pretty amazing.”

After spending time away, Hawkeye returned to Camp Sanguinity in 2014. That same year, he decided to expand his support for Cook Children’s beyond the campgrounds and onto his own backyard – the airwaves. In October, the radiothon began. Since then, the team has raised more than $338,000.

Hawkeye was recognized for his efforts in the fight against childhood cancer last year by Cook Children’s and Aflac through its Duckprints program. Duckprints is a national program that recognizes unsung heroes in their communities who have made a difference in the lives of children and families facing cancer.

The footprint that Hawkeye is leaving on Cook Children’s is deep, and touches many lives.

“Cook Children’s is really a crown jewel of Fort Worth,” Hawkeye said. “You get a sense of the importance of the work that everyone does and how thoughtful and planned out everything is there. Everyone is so dedicated to giving the best possible care possible for the kids in our community.”

Lee has been a catering aid for Cook Children’s  and is known as much for being the consummate pro as he is for his caring, compassionate nature for his customers, coworkers and patients. He is deeply spiritual and takes great pride in his work and has been a vital piece of the catering staff at Cook Children’s since his arrival.

It only makes sense that he would be in the service industry because Lee lives to serve others in any way he possibly can.

And his efforts have not gone unnoticed. 

His  presence is not lost on those on his immediate and surrounding teams. Executive Chef and Manager JoAnn Williams sums up his value, “It would be so much easier if I had 100 Vernons.”

But there is only one Vernon Lee.

When Williams began working at Cook Children’s 15 years ago, there were only two people working in catering – Lee and her. She said they made an instant connection that remains to this day. He’s always there for not only her, but everyone who needs him.

Lee is known for amazing memory. He knows the schedule and calendar, it seems, of every event happening at Cook Children’s. The catering service has been called by various departments through the years panicked, saying they forgot to call in an order for an event. But they had no need to fear because Lee remembered it and had already scheduled the order. Lee always pitches in where he’s needed. If it’s a slow catering day, he finds somewhere else that needs help without ever being asked.

During his time at Cook Children’s, Lee has built many wonderful relationships. Many people come to him and they ask him to pray for them because they know he’s deeply spiritual. Those who don’t have the same spiritual connection still love Lee and the way he approaches life. He is known for being genuine and consistently nice and gracious. He’s the person who remembers everything from boss’s day to anniversaries and birthdays. He gives everything of himself without complains. He wants to make sure everyone is having a great day.

Lee may work in catering, but he’s also a caregiver. He is there for staff when they need someone the most. He’s also there for his family and friends. He’s not pretentious and doesn’t want attention and praise heaped on him. But it’s that attitude and example that he sets, that makes him stand out from others.  In 2015, Lee was announced as the recipient of the Employee of the Year Award for the DFW Hospital Council in the category of hospitals with 205-499 beds.

Lee said he prepared a speech the night before the ceremony, but never removed it from his pocket. Instead, he spoke from his heart on how grateful he was to be nominated and thankful to everyone who made it possible, including Nancy Cychol, the president of Cook Children's Medical Center, who nominated Lee for the award.

"I'm just a piece of the puzzle in fulfilling The Promise of Cook Children's of knowing every child's life is sacred," Lee said. "I had gotten over the shock of me being nominated and was pretty content just being there as nominee. For them to call my name and say I was a winner I was pretty surprised. I was shocked."

Lee was the only one surprised. Everyone at Cook Children's knew he deserved this special recognition.

“We don’t ever allow Eve to say she can’t do it,” Katie said. “In her daycare class, if kids say she can’t do something, she has fun showing them that she can and proving them wrong. At 5, we are trying to let her do things on her own and not help her as much. We are allowing her to struggle to find her independence. We don’t want to be the helicopter parents.

“We want her to stand on her own.”

Eve’s parents, Katie and D.L., have taught their daughter to be a strong, independent lady. She may not always do things the traditional way, but she finds a way to get it done. They call it the “Evie way.”

The Orthotics and Prosthetics team works to give Eve her independence of a different nature as they work on a new prosthetic leg and arm.

Jillian Warden, an orthotist and prosethetist at Cook Children's, is working to fit Eve with a new arm that will allow her to use a cable to retract and open her hand, as well as grip things.

She’s also getting used to a newly fitted leg. Katie says that Eve is getting comfortable to trust the new leg, but she’s getting more comfortable as she goes to Rehab twice a week.

Eve was born Sept. 18, 2011. Her parents call her a miracle baby after surviving a rupture of the amniotic sac, which happened when she was at only 6 weeks gestation.

“While her life was graciously spared, her body was badly injured,” her parents wrote in their blog shortly after her birth.

While still in the womb and the size of an adult’s pinky finger, Eve lost her right leg and left arm. She was born with only one badly clubbed left leg and bands inside the placenta removed two fingers from her right hand.

Eve continues the determination she brought with her just to survive into her world today as a spunky 5 year old. She’s a Disney kid and loves her visit to the parks. She frequents the park so often she casually name checks Ariel from the Little Mermaid as if they are old chums. She says the characters recognize her when she goes to the park.

She can draw with her toes or dress her princess dolls with her hand and foot.

It’s all part of doing things Evie’s way.

Orthotics and Prosthetics

With the goal of providing the right care by the right person in the right setting, Cook Children's Home Health offers orthotic and prosthetic services. Whether outpatient at our office or in our numerous clinic settings, we strive to give our pediatric patients the best orthotic and prosthetic care.

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.

An early advocate for distraction osteogenesis in the facial skeleton, he helped to develop one of the first multi-planner devices used for lengthening the mandible in children. After a brief surgery, the device is used to slowly lengthen bones that are congenitally too small. Over the course of two weeks, daily adjustments actively stretch the native structures so that new bone and soft tissue can be created as the surgeon works to restore facial balance and harmony.

Dr. Hubli has crisscrossed the globe in the name of craniofacial and cleft care, operating and educating from Brazil to Romania and from Finland to Saudi Arabia. He has been asked to speak on the topics of quality in medicine, craniofacial and cleft care and enhancing patient satisfaction at sites, including Harvard University and the Mayo Clinic. His work has been featured on the Oprah Winfrey Show and in Parade Magazine.

But Dr. Hubli is known for more than his skill as a surgeon. It’s the approach to the way he cares for “his kids” that makes him special.

“When I meet new families I like to joke with the moms and dads and tell them, ‘Now, these are my kids too,’” Dr. Hubli said. “I have two wonderful kids of my own. These are my extra kids, my extended family if you will. When I offer advice to parents or make medical or surgical decisions for my patients, I make the same decisions based on what I would do for my own child and trust me … I love my children dearly.”

Dr. Hubli has two children – Alexander, 17, and Sidney, 12, -- and has been married to Joni for 26 years.

It was Dr. Hubli’s brain that Joni says first attracted her to him. No so much his intelligence that would make him a world-class craniofacial surgeon, but his sense of humor.

“He likes to make everybody laugh,” she said. “He’s always been that way. I liked him the first time I met him. He had a great sense of humor. It helps him as a doctor, especially treating children and talking to parents. He has a way of lightening up a situation and that helps them to feel good.”

Dr. Hubli has a unique reason as to why he relates well to his patients – he was once in their shoes. As a child, Dr. Hubli spent many hours in a hospital while he was a youngster in Connecticut. He suffered from complications due to allergy induced asthma.

Things were different back then. Parents were only allowed to visit for a couple of hours a day and there were no parental overnight stays. A week-long stay in a cold-multi-bed pediatric hospital ward left a lasting impression on a 5-year old mind. The facilities were grim, but Dr. Hubli found that the caregivers, the doctor and staff could be rays of sunshine when times were trying. Joni believes that’s what led him into a career as a physician.

And what made him work with kids? More than anything else, Dr. Hubli simply wants to repair a child’s face so he or she can smile. After all, smiles and laughs are so important to the self-professed clown.

Watch him walk down the halls of the medical center and you’ll see him stop and joke with almost anyone he sees, especially the children. Maybe, it’s because he identifies with their sense of humor.

“Pediatrics is a perfect fit for Eric because he can still see the lighter side of life,” Joni said. “Like a kid, he looks to have fun in everything he does and that makes him fun to be around. He has a saying, ‘I have to grow old, but I don’t have to grow up.’ He’s a great doctor and very skilled, but he is not afraid to let his silly side out. We were talking at lunch the other day and he said, ‘Our 12-year old daughter is more grown up than I am.’”

But make no mistake; Dr. Hubli takes his career and the kids he cares for seriously. For him craniofacial and cleft surgery is not just a job, it’s a vocation. Joni will tell you that “he takes his work home. He still studies, he still reviews, he challenges himself to be better every case and we see the distracted dad at home sometimes because he’s thinking about a patient.”

His dedication is energized by the strength of his patients and their families whom he calls “an essay in courage.” Dr. Hubli thought of becoming a priest as a teenager, but felt a stronger calling to becoming a physician. Either way, healing was the goal.

“Would that all of us have the same grace as these kids do! I don’t know if I would,” Dr. Hubli said. “But wow, these kids are cool. If you don’t believe in God, take a look at the kid next to you. It’s a miracle. It’s beyond my comprehension. You can talk to me about DNA and all the wonders of science, but how did these little strands make all of that? I have the degrees. I’ve taken genetics. I’m an educated person. But I say, ‘That it’s still a miracle.’”

Dr. Hubli’s surgical work on children varies. At times, he may be preventing a speech impediment that will stop a lifetime of being made fun or getting bullied. At other times, it’s a matter of performing a surgery that saves a child’s life by giving him or her opportunity to eat or breathe properly.

“Each case is unique because each child is unique. It’s not because of what they look like or why I’m seeing them, but because of who they are,” Dr. Hubli said. “Regardless of the child, the surgical goal is always the same. If I’m successful, their life truly becomes their own to mold and make. Their potential and their future are in their own hands.”

And many times, he’s performing that surgery with Richard Roberts, M.D., a neurosurgeon at Cook Children’s.

“I love working with Eric. We have a great friendship and work well together,” Dr. Roberts said. “The days that we have surgery together are among my most enjoyable. He is a funny guy and great entertainment, but when we step in the operating room it becomes all business. We share a common goal of trying to do the best for the children and we both carry that attitude through surgery until we’re finished.”

So you have two sides of Eric Hubli. The funny guy with hyperactivity issues (his word) … and the other guy, who happens to be a brilliant surgeon.

“I love having fun. In general, I think we all take ourselves too seriously,” Dr. Hubli said. “Don’t get me wrong. This work is not a game and I’m wholly committed to what I do. I work hard and I take my job very seriously. That said, there is healing in humor. I want what’s best for the children I care for, but that’s the thing, they are children and we are a children’s hospital. We should have fun so that our kids, our patients, can have fun even when what we do is some of the most serious and important work that you will ever find.”

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.

In August of 2013, Joshlynn was diagnosed with Ewing’s Sarcoma, an aggressive bone cancer, occurring mainly in childhood and adolescence. Suddenly the 19-year-old single mom faced a whole new set of challenges.

“I was afraid my life was over,” she said. “I was afraid of what would happen to my daughter if I wasn't there. My little girl is my life. I thought, ‘Why me?’ Everything you could possibly think of went through my head. I had no idea how bad or what it was until we did tests and scans. I learned no matter what to be positive and you will make it.”

Joshlynn knew she wouldn’t go through her journey alone. In her home of Mineral Wells, Texas, she has her parents and four siblings. Although, they’ve been there for her, Joshlynn said her diagnosis placed a strain on everyone.

“At first it was really hard for everyone to accept that I had cancer,” she said “Everyone was afraid to talk about it or even ask questions because they didn't know how I would feel about it. But for me, talking about it helps me. And now my family, my closest friends and I are closer than ever and they really support me.”

While family and friends supported her, only those with similar experiences could truly understand Joshlynn. She struggled with the news of the cancer and mainly the impact it would have on her little girl.

“Being away from my daughter so much for treatment has been the toughest part,” she said. “Zoey is still young so she doesn’t quite understand why I'm gone all the time and it really hurts me. It’s hard when I’m home too because I’m sick and not able to do things by myself like I use to.”

Joshlynn found not only treatment for her cancer, but support from peers at Cook Children’s. She describes her physician, Karen Albritton, M.D., as “absolutely amazing.” Dr. Albritton is the medical director of the Adolescent and Young Adult (AYA) Program in the Hematology and Oncology Center at Cook Children’s.

“Dr. Albritton truly cares and understands all her patients,” Joshlynn said. “Cook Children’s is an amazing place. They gave me strength and courage to beat this. Everyone in the AYA program has helped me out so much. They have changed my life. It's really amazing to have people that know what you’re going through and understand you, when sometimes your family can't.”

For now, there’s one family member that doesn’t understand everything that Joshlynn’s going through and that’s just fine with her. Zoey will someday understand how her mommy battled cancer.

“It's really hard at times. Having cancer and doing treatments and being gone so much never gets easier,” Joshlynn said. “My daughter makes me want to fight and beat this even more. You have to keep a positive attitude, and know that no matter what, just believe in yourself.”

After all, that’s the attitude that makes fighters great.

This young golfer is actually a patient at Cook Children’s playing in the Annual Bedpan Open, an event where Cook Children’s staff goes all out to make the most creative holes you could imagine (within the constraints of a $100 budget) for children to putt through. At each hole, a PGA golfer is playing caddy for the kids.

Last year’s pros were Tim Herron, Jarrod Lyle and Sam Saunders. The golfers take time out of practice for the Dean & Deluca Invitational to be a part of the Bedpan Open every year. This will be the 27th annual event at Cook Children's.

“What I see is that the people who work here are very passionate about what they are doing and about making sure the kids have a good time while going through some really hard times,” Herron said. “It’s totally cool. Just to get the kids out for a little while with what they are going through and to have a smile on their face, even if it’s briefly, while doing something like this is really genuine and cool. This is some place.”

And while Herron may be in the spotlight as a pro, he said he didn’t mind taking a backseat to the patients during the Bedpan Open.

After all, this is all about the young golfers … and the competition to make the most elaborate and creative hole among staff. Where else could you find a hole with an art theme that has the following:

• The player chooses a giant paint brush and knocks the ball through the paint bucket, tilted on a ramp.
• The ball rolls and falls into paint.
• From there, the golfer chooses his or her color and then putts past the giant crayons (made out of pool noodles) and into more paint.
• Uh oh, she’s knocked the ball into a water hazard, which is actually a small pool with water color. But it’s OK, the ball has been scooped up by a giant spoon that takes the ball into a water color palette.
• The ball rolls past the sand trap, which is rainbow colored of course, around the pair of giant scissors and pencils and then into the mystery tunnel.
• Under the tunnel is different puddles of paint. The ball picks up several different colors of paint as it rolls through the tunnel so the golfer won’t know the color of the ball until it comes out of the tunnel.
• Finally the ball goes into the bedpan, which actually offers different holes for the ball to fall into. Depending on the color hole, the participants will receive a fun prize that sticks to the theme of the hole – pencils, markers, paints …

At the end, the golfers receive another prize. The entire time they’ve been creating art themselves as they roll the paint on a sheet of paper. The paper is scooped up and given to the kids as a souvenir of their experience.

“We are encouraging play and creativeness. That theme really fit our group. All of us love to do this with the kids and we are encouraging them to have fun,” said Diana Gibson, resident artist at Cook Children’s.

Gibson, Jillian Mitchell,Community Program coordintator Erin Reid, a Child Life specialists are all health care professionals who work in the Child Life department, who put as much thought into the child’s well-being as they did in being creative.

“We each work different shifts and days on our team so it took a bit of organization in order to complete all of the aspects of our bed pan hole,” Gibson said. “Our days are filled with supporting patients and their families during their stay here so we had to work on the pieces when we had a spare minute or after work hours were over. All in all, we probably spent about twenty man hours building and creating all of the different sections of our hole. But we’d do it all over again because we are all about these kids!”

Once the design of the hole was finished, the team thought of ways to make sure that everything was wheelchair and IV pole accessible. They made sure that everything would be safe on the outside of the course and within the hole. They glued pieces to the ground so they kids couldn’t roll on top of them and made sure they could get around the corners. Even the tunnel can be lifted up if need be so a child doesn’t have to stress about getting his or her ball out of there.

The course also offers the children an opportunity that sometimes goes missing in a hospital setting – a choice.

“It gives them a chance to get out of their rooms, come down here and be creative with fewer restrictions,” Mitchell said. “They can have that interaction, regardless of whatever else they have going on here. If this is the one thing they did that day or that week that is truly awesome they can use this hole as their happy place.”

Yes, even with the PGA golfers and the employees competing against each other for creating the best hole, this day belongs to the kids.

“When they come down here, they are the celebrities,” Gibson said. “Everyone is there for them. It raises their self-esteem and that sense of awareness of, ‘I’m important and they care about me.’ So I think having that – knowing that all these people made all this for you to come down and play can really help in their healing process – just knowing that people really do care and want them to get better.”

Black worked at the Cook Children’s Heart Center for nearly 10 years before deciding to transition over into adult cardiology, but soon realized just how much she missed working with kids.

“A few years after I left, I was really ready to come back to Cook Children’s because I missed it so much,” said Black. “Nobody leaves here because it is such a good company, so I had to wait a few years to get my foot back in the door.”

Her years of hard work and determination paid off, as Black has finally found her way back to Cook Children’s.

“I’m back in the field of cardiology and doing things that I like, so I’m excited,” said Black.

She will be joining one other arrhythmia clinical assistant to perform diagnostic testing for the Heart Center, splitting her time between the medical center and an outpatient clinic.

“They hired me because the job is very busy and very stressful, and since the clinics are so big and the cardiology department is so huge, they have needed help for a while,” said Black.

Although Black is familiar with working at Cook Children’s, so much seems new to her now as the medical center has greatly expanded and evolved over the past 10 years.

“In the 10 years I have been gone it has actually doubled in size, so I’m still getting used to everything,” said Black. “It’s completely different from when I left.”

Black says she is most looking forward to returning to the unique work environment of Cook Children’s, where the atmosphere and care for patient families is unlike anywhere else.

“Cook Children’s has high-quality, professional care, but in a very relaxed environment with the patients because you are here to help make their day,” said Black. “Despite the horrible things they may be going through, you still have to cheer them up. So working here makes you feel good because you know you’re helping somebody, especially kids.”

- Written by Victoria Shelton

“People told me everybody wants to work in pediatrics until you have kids,” Dr. Honeycutt said. “They said, ‘Then you won’t want to work on kids any longer. It will be too much.’ But it was the exact opposite. When I had my own kids I realized even more this was what I wanted. I wanted to help kids like my own. It gave me much more empathy. It made it much easier to take care of them. In my line of work, I’m asking parents to hand their kids off to me and take care of them. They entrust their kids’ lives in my hands and I understand that.”

As a teenager, Dr. Honeycutt saw first-hand the role a surgeon can play in helping a family after a traumatic event.

One afternoon in his hometown of Paragould, Ark., while “horsing around” after football practice, the then 15 year old broke his neck.

A surgical scar remains on Dr. Honeycutt’s neck and so do the memories of his time in the hospital. He describes the scene at the time like what you would see in a bad TV movie as he was placed in traction.

As a patient, he saw physicians changing patient’s lives and making them better. The straight A student now knew what he wanted to be when he grew up.

Then during medical school, Dr. Honeycutt found his specialty.

“When I was doing my neurosurgery rotation, it all just clicked,” he said. “It clearly had all the parts I really enjoyed. I liked being a surgeon. I liked the neurosciences. I liked the workings of the brain. I just loved everything about it.”

While Dr. Honeycutt is now an experienced neurosurgeon, he still strives to be at the forefront of the latest technology and technique. Working on a child’s brain requires not only a steady hand, but the latest in state-of the-art technology.

Dr. Honeycutt and his fellow neurosurgeons use their expertise to perform the most intricate and delicate surgeries, such as deep brain stimulation, iMRI-guided surgery and laser ablation surgery.

“It’s an exciting time right now because we are learning so much about the brain and how it works and at the same time our technology continues to improve with micro instruments, with robotics and computers,” Dr. Honeycutt said. “If I don’t keep learning and keep up with what’s going on, I can get so far behind, rather quickly. One of the great things about Cook Children’s is we are always on the leading edge.”

Another aspect of Cook Children’s that Dr. Honeycutt said makes it unique is the relationship between the neurologists and the neurosciences. As surprising as it may be, Dr. Honeycutt says it’s rare for other hospitals to have the neurologists and neurosurgeons share a clinic together. He calls the working relationship between everyone involved in the Department of Neurosciences at Cook Children’s unbelievable. A lot of it has to do with that communication and the skill of the surgeons and physicians. They push each other constantly to do better.

At Cook Children’s, the neurologists and neurosurgeons can give each other immediate feedback on a patient. “You look at our situation and say, ‘Why doesn’t everyone do this?’ It’s so silly that people don’t do this everywhere,” Dr. Honeycutt said. “It’s one of the things that makes this place so special.”

At last, after long days plagued with uncertainty, they found their answer on the other end of a phone call from Paul Thornton, M.D., medical director of Cook Children’s Congenital Hyperinsulinism Center and Endocrine Diabetes program.

The family found Dr. Thornton through a Google search and a story posted on checkupnewsroom.com. The article told the story of how Dr. Thornton had led thea team of experts from around the world in creating new screening for physicians to recognize and manage neonates at increased risk for a persistent hypoglycemia disorder. The fact that Dr. Thornton was establishing these guidelines proved to Jake and Tella that he would be the best person to care for their little boy.

Dr. Thornton expected Brantlee had a rare condition called hyperinsulinism. He was right.

While at Cook Children’s, Brantlee had two pancreatectomies and a Gastrostomy Button, or G-Button, installed.

“Brantlee is now the first baby in the United States to undergo this new experimental therapy for hyperinulinism and so far, it is working, allowing him to go home and keep his blood glucose in the safe range,” Dr. Thornton said.

But before they found their answers, the Sanfords were left with only questions.

Brantlee was born a month and a half prior to his due date, weighing a surprising 8 pounds, 6 ounces. He was taken immediately to a Neonatal Intensive Care Unit in Flint, Mich., leaving behind tearful parents Jake and Tella to wonder and worry about the fate of their newborn son. Over the next few days, Brantlee’s insulin levels continued to climb without any explanation.

“We found out Brantlee was having problems shortly after his birth,” Jake said. “We wondered why he was so big for a premature baby and the doctors were curious if we had our due date right.”

However, within a week of Brantlee’s birth, an endocrinologist pulled his parents aside. Noticing his furrowed brow and serious demeanor, Jake and Tella braced themselves for what they could only expect, was bad news. The doctor informed them that Brantlee’s insulin levels were in the 300s when his sugar was 30mg/dL. Typically, a healthy newborn’s insulin level should be less than 2 with low glucose levels.

“In the 32 years he’d practiced, he said he’d never seen a baby at these levels,” Jake said. The doctors initially informed Jake and Tella that their son had a rare form of hypoglycemia, which is when the blood glucose drops below 50 milligrams per deciliter. However, the doctors’ treatments for hypoglycemia were not working on Brantlee. While Jake and Tella continued to rely on each other, both were growing weary and exhausted, continually praying for healing.

“It was a nightmare for us. We were slowly realizing that Brantlee wasn’t a typical premature baby,” Jake said.

After a week of tests and no answers, the doctors recommended Brantlee be sent to a children’s hospital in Detroit. Jake, not about to be away from his son, decided to use all of his vacation days to travel to Detroit with Tella. After extensive tests by multiple doctors, Jake said no one could figure out what was wrong with his baby. It seemed that Jake, Tella and Brantlee had hit another dead end.

But then everything changed.

“My sister had sent me a newsletter from a children’s hospital in Texas called Cook Children’s. I emailed the writer of this article on congenital hyperinsulinism while waiting for a miracle to happen,” Jake said.

Two days later, Jake received a phone call from a Texas area code. Dr. Thornton was on the other line, asking Jake if he and Tella would be willing to bring their newborn son to Fort Worth. “We figured if a doctor took the time to call us, he wanted to care for us,” Jake said.

After hearing from Dr. Thornton, Jake acted on impulse, desperately hoping that this was the moment that could save Brantlee’s life. Two days later, Tella and Brantlee were on a plane headed to Texas.

“They were amazed I called back so fast and how quickly we were able to arrange transport to get them here,” Dr. Thornton said.

After arriving at Cook Children’s and meeting Dr. Thornton, Brantlee was officially diagnosed with hyperinsulinism. This condition causes abnormally high levels of insulin, which can increase the risk for dangerous complications to the brain. However, fortunately for the Sanford family, Cook Children’s is one of only two hospitals in the United States with hyperinsulinism centers.

“It was really great to know that they were able to find us on the web, make contact, and get here fast so we could treat their baby,” Dr. Thornton said. Dr. Thornton is one of the most recognized hyperinsulinism specialists in the world, which made Jake and Tella feel more comfortable placing their son in his care.

“Dr. Thornton’s call was truly a sign from heaven. We put our faith to the wind and it took us to Texas,” Jake said.

After two and a half months, Brantlee was allowed to return home, just in time for the holidays.

“Since being back, we have tried our best to be a normal family, between the octreotide injections, blood sugar checks, continuous feedings from 9 p.m. to 9 a.m., and sirolimus into the G-Button.” To most, this sounds like a nightmare of foreign terminology. However, for the Sanford family, this circumstance is now a blessing.

Today, Jake and Tella can now manageably raise him from a home instead of a hospital.

“The threat of his sugars going low is still a battle for us, but thanks to Cook Children’s and his medication, we are able to raise it to where it needs to be,” Jake said.

Brantlee will return to Cook Children’s in June for a follow up appointment with Dr. Thornton.

More about Cook Children's Hyperinsulinism Center

One of only two such programs in the nation Cook Children's Hyperinsulinism Center uses a specialized team approach to treat this rare disease. Hyperinsulinism affects many areas of the body, so to truly treat the disease, each child is seen by top physicians, nurses, researchers and specialists in the field. These medical professionals have spent additional years of intense study and have dedicated their practice to focusing on hyperinsulinism so that your child has access to the medical care that treats all the symptoms. It is this level of treatment that has helped earn our program a distinguished international reputation for extraordinary care and achieving positive results.

KrisDi Ingermann went to Cook Children’s in 2007 close to death from toxic shock. Once she arrived, an Emergency Room physician almost immediately diagnosed her. Over the next six days KrisDi was unconscious in the Cook Children’s pediatric Intensive Care Unit.

“I have never been so scared in my life,” said Theresa Ingermann, KrisDi’s mother. “She had doctors and nurses at her bedside 24/7 until she was out of the woods.”

As they watch the drama of Rylie play out on national television, the Ingermanns hope their story will help others understand not only the difficulty of recovery, but also the stigma attached with toxic shock.

KrisDi’s symptoms began almost immediately after she used a tampon for only the second time in her life. Later the Centers for Disease Control and Prevention took the new sports tampon brand she used and interviewed the family in hopes of preventing other users from suffering a similar fate.

KrisDi was embarrassed at the situation. She was even concerned because the CDC would report on her illness and that a record would be kept of what she had gone through as a child. More than eight years after she nearly died, KrisDi fights back tears remembering not only her near-death experience but what she dealt with from her peers who didn’t understand her condition.

“At the time, it really messed me up in high school,” KrisDi said. “The first thing people said after I got it was that I was dirty and that I didn’t take care of myself. There are always mean kids in school and they thought it was because I didn’t change my tampon. They didn’t know why I got it, but that was not the reason.”

Little did those kids know the true story. The family had gone to Lake Whitney near Waco, Texas. Theresa had gone to the grocery store. She wasn’t gone a half hour, but when she returned she found her daughter in horrible shape.

KrisDi’s skin was “beat red” and throwing up. They rushed her to a nearby small clinic. The medical team gave her oxygen but it did little to help. KrisDi had a defibrillator for a heart condition and the pacemaker was working against the medication she was given at the time.

After three hours, the medical team at the clinic called an ambulance to rush her to Cook Children’s Medical Center in Fort Worth. KrisDi remember saying she was going to die. Her mom says when her daughter opened her eyes they were a frightening blood-shot color, as if KrisDi was bleeding from them.

The next six days was a battle for KrisDi’s life.

“It kept getting worse and worse, for a while the medical team didn’t know if she would make it,” Theresa said. “Fortunately, KrisDi doesn’t remember any of it. But for me, it was the worst time in my life. I wish I could forget it. It’s hard to even think about it now.”

On the fifth day everything changed for the better. KrisDi opened her eyes and looked around. By the next day she was out of the ICU. She spent another week at Cook Children’s before getting discharged.

After the harsh reaction she received when she returned home, it was almost a year later before KrisDi told anyone that she had toxic shock because of the stigma involved with the condition. The family eventually moved to Kentucky to put that time behind them.

“KrisDi was always a very outgoing person but she just shut down after she got out of the hospital. She didn’t want to see anybody. She felt shamed because of it,” Theresa said. “She received counseling for help. But kids that age are going to talk. It wasn’t the truth the things they said about her. It was horrible. I don’t think people understand she had done everything right and we still almost lost her.”

Today, KrisDi is doing well and is the mom of a 7-month old daughter named Vera. KrisDi suffers from migraines and muscle aches, but she’s not sure if it’s related to toxic shock.

“I hope that more studies are done on toxic shock and I also hope that people take time to learn more about it,” KrisDi said. “I have good hygiene. I did as a young girl too. I had done my research when I had my first period and did everything I was supposed to do. I want people to know that it can happen and I want girls like Rylie to know that it’s not something she should feel guilty about or embarrassed by it. I was embarrassed for a long time because people thought I was dirty.

But I wasn’t dirty and I’m not embarrassed anymore.”

“Those who sow with tears will reap with songs of joy.”

Psalm 126:5

As a young married couple, D.L. and Katie Frugé prayed that their family would be “different” in their examples as Christians.

But they say they never could have imagined the journey that God had for them, following the birth of their two daughters – Eve Catherine and Felicity Leigh.

Eve was born Sept. 18, 2011. Her parents call her a miracle baby after surviving a rupture of the amniotic sac, which happened when she was at only 6 weeks gestation.

“While her life was graciously spared, her body was badly injured,” her parents wrote in their blog shortly after her birth.

While still in the womb and the size of an adult’s pinky finger, Eve lost her right leg and left arm. She was born with only one badly clubbed left leg and bands inside the placenta removed two fingers from her right hand.

Eve continues the determination she brought with her just to survive into her world today as a spunky 5 year old. She’s a Disney kid and loves her visit to the parks. She's such a regular that she says that Ariel from the Little Mermaid recognized her during hte family's most recent trip.

She can draw with her toes or dress her princess dolls with her hand and foot.

At 3 days old, Eve went to Cook Children’s Neonatal Intensive Care Unit because of concern her bilirubin levels were too high. Eve stayed only two days before going home with a hand-stitched Build-A-Bear.

Falls were to be an expected part of Eve’s life due to her learning to walk on a prosthetic leg and she visited Cook Children’s Emergency Department in March 2014, where she received stitches.

“Cook Children’s is absolutely the best when it comes to taking care of kids,” her mom wrote at the time. “They sent in someone who helped keep her distracted by playing games on an iPad, and then quickly sowed her chin up!”

When Felicity was born on Jan. 28, 2014, she had extensive brain damage as a result of being infected with Cytomegalovirus (CMV) at less than 18 weeks in utero. Hours after her birth, the Cook Children’s Teddy Bear Transport team took Felicity to the NICU where help was waiting. An MRI showed significant scarring on her brain that would mean her mental age as an adult would be 6 to 9 years old.

Felicity has surprised everyone by how well she’s doing. At a checkup in October, it was discovered that she has mild to moderate hearing loss that can be completely correctable with hearing aids.

Today, both Eve and Felicity are in therapy twice a week at Cook Children’s Rehab Facility in Fort Worth, Texas.

Last year, Eve participated in the “Tri My Best Triathlon,” led by the Rehab team.

But Eve’s not finished showing off just yet. She was featured in a commercial with adult amputees that was filmed as part of a campaign to choose a Doritos commercial for the Super Bowl.

Her dad said this isn’t much of a surprise for his daughter to have a knack for being in front of a camera.

“She always like to play and use her imagination,” D.L. said. “She loves to pretend to be a princess and reenact the movies she watches. She likes to make films on her phone.”

But Eve doesn’t need to pretend to be anyone else. The true story of Eve and Felicity is already amazing enough.

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.

After all, who doesn’t remember being judged by the cool kid in school. And now it’s your daughter doing the judging?

But to help ensure your daughter’s positive transition into womanhood, it’s better to suppress your fear of being “un-cool” in your teen’s eyes and work toward gaining her respect instead.

“Sometimes, moms feel like that stepping into a peer-like role will enable them to find out more about their daughters’ lives,” said Lena Zettler, MA, LPA, director of psychology at Cook Children’s. “Frequently, however, that approach backfires, because the information they learn isn’t always innocent or pleasant. When you suddenly step out of that friend role and become the mother again, it’s very confusing to a teen.”

Finding a balance

In general, mothers are the managers of their children’s emotional and social lives. Because of this, the line between friendships and mother-daughter relationships can get blurry. A good rule of thumb to remember – most teens want to have friends their own age and their parent should play a supportive role.

It’s important to enforce limits and set expectations. If your relationship with your daughter has teetered into “friend” territory, it’s never too late to take back control.

• Look to female friends and relatives who’ve done a good job raising their daughters for advice, and allow them to mentor you.
• Have an honest conversation with your daughter to let her know you’re not comfortable being her “friend” anymore and why.
• Ask what she needs—not wants—from you as a mother.

You may not be your daughter’s BFF, but the relationship could be more rewarding for it.

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!

Well, I was that parent too. And then one day everything changed in the blink of an eye. 

It takes a while to come to terms with the fact when “that would be so terrible” turns into “I can’t believe this happened to me.” Shock and disbelief take a long time to get over. 

On August 6th, 2012, we lost our 4-year old son Xander to drowning. The day our lives changed tragically forever, we were now that family. On a summer day playing with my three children and our friends in the pool, two short minutes changed everything.

The kids and I had met my friend and her three children for an afternoon at the community pool in her neighborhood. We all swam numerous times a week and were in the water all the time.

Immediately I was confused by the layout of this pool and the sight obstructions from many angles. I said to my friend, we would just have to watch them closely in this odd pool configuration. We began our day of swimming after a quick lunch. My two older girls could swim proficiently and we were still working on Xander jumping in and getting his face wet. He didn’t love water on his face but we were making strides. 

All day my son was attached at the hip to my girlfriend’s daughter, who was 3, they were inseparable; he was very smitten that day. Always a very loving boy, compassionate and wanted to take care of everyone.

After following Xander with his friend on his hip around the bend of the shallow lazy river, my middle daughter asked me to help her get watermelon out of the cooler, so I asked my girlfriend to watch the little ones. Her son called her a couple feet away and when she turned back around, the little ones had stepped too far where the slope starts to get deeper. 

I’m sure Xander panicked when the water touched his face and couldn’t turn around. When my friend turned around his face was under and he was holding his little friend up above the water, which pushed him down. It all happened in less than 2 minutes. 

They were pulled out immediately but he had slipped unconscious. We were amazed that there was a nurse at the pool that day with her children who began CPR right away. Unfortunately, it took too long to get a heartbeat, his tummy was full of lunch. Paramedics finally got a heartbeat after what proved to be too long. We were immediately flown by CareFlight to Cook Children’s in Ftort Worth, Texas where we could not have asked for better care. They did everything they possibly could and took amazing care of our son in his last days. 

In the grief and suffering and disbelief of losing our third-born child, baby and only boy, our hearts and minds have been so expanded by the knowledge and love of the amazing nurses and doctors at Cooks Children’s. The support system they have is amazing.  When they told us he would never wake we immediately agreed for our son to be an organ and tissue donor, we are proud that he went on to save so many lives. And we are grateful for the love and support we received from Cook Children’s and LifeGift donation care at an unimaginable time of our lives. 

Do not buy the misconception from the movies of drowning. There is no splashing or screaming. It is silent and it happens FAST. My mission as his mother now is to carry on what I’ve learned in his name and work for safety and knowledge for parents and children.

It can be a pool, bathtub, toilet, sink or even a pail of water. I am now a fierce advocate with Cook Children’s and the Fort Worth Drowning Prevention Coalition to spread the word of the importance of water safety. I will honor my son until the day I die and I hope I’m teaching my girls to do the same. Even two seconds is too long to turn your back on a child in the water.

Unfortunately, I learned the hard way but I hope our story helps even one family be more aware. I would give anything in this world to kiss and hug my baby boy again. I pray no one ever has to feel what we have.  Please be aware and cherish every single moment you have with your children.

Clark couldn’t resist. Just like all the times she’s spent playing with some of the long-term ventilated patient population, actually getting on the floor mats along with the children. She says this helps keep her grounded in Cook Children’s nursing philosophy of caring.

It’s that attitude that helps someone like Clark stand out and be named as one of the 2015 DFW Great 100 Nurses, sponsored by DFW Great 100 Nurses Inc.

Clark was one of four Cook Children’s nurses named to the DFW Great 100, along with Melissa Irving, Bernadette Kelly and Elizabeth Leper.

The nurses were chosen based on the following categories - role model, leadership qualities, service to the community, compassionate caregiver and significant contributions.

Here’s a glimpse of the nomination letters sent on behalf of the recipients:

Melissa Irving, Teddy Bear Transport, Neonatal Transport Nurse

Melissa has been a member of the Teddy Bear Transport team since1985. Melissa was one of the first team members; she set the standard for the qualities that we look for in our nurses today: compassion, leadership, critical thinking, and stewardship. Being a transport nurse is not exactly the same as being a bed side nurse. You play many different roles, as the team is comprised of a nurse, RT and a paramedic. You have to be able to assess and relay the information to the accepting physicians without hesitation. Melissa is an excellent teacher and often provides her expertise to the referring staff to help with the care they provide prior to our arrival …

Melissa leaves a lasting impression on her patients. She becomes that beacon of hope for those she cares for; it could be the gentle voice or the assuring touch and the ever-present smile. She has consistently received cards and emails from the families that she has cared for over the past 30 years; she just connects with people …

Melissa is such a compassionate caregiver; she has an amazing affinity to calm those around her. She cares for the entire team, the referring staff as well as her patients. She treats every child as if they were her very own; it is her calling to provide the best care.

Bernadette Kelly, Cardiac Intensive Care Unit Nurse Manager

Recently the CICU cared for a patient (baby) whose mother never left the bedside. The patient was constantly fussy and crying secondary to his diagnosis. This family had been on the unit for a few weeks and was noted to have no additional family support and difficulty communicating with staff as English was their second spoken language.

(Kelly) was a resource nurse that day and did not have a patient assignment. She noticed the mom looked exhausted and took this as a time to discuss self-care. It was around 4 p.m. when she asked the mother if she had eaten. She said, “No, I can’t leave because he will cry if I put him down.”

(Kelly) knew due to his defect he could not cry for long periods without having status changes. This nominee volunteered to take the baby and he immediately went to sleep with her rocking him. Once his mother noticed her compassion toward her ill infant she left to go eat. When she came back, (Kelly) encouraged her to lie down and that she would still be available to hold him. Caregiver fatigue is often seen in parents that care for ill children. (Kelly) provided education to a mother with minimal family support about the importance of her eating and resting while her son was in the ICU. This young mother was so grateful for the time this nominee spent holding her baby so she could take care of herself. (Kelly’s) compassion for pediatric cardiac patients has been at the forefront of her career and secondary to her skill set, compassion and empathy, she was the PICU Employee of the Year in 2012.

Elizabeth Leeper, Perioperative Services Nurse Manager

(Leeper) is a compassionate caregiver to patients, families and staff. This nurse follows our philosophy of being a patient advocate and promoting a culture of serving others with respect for individuality and diversity. I have seen her make allowances for special needs patients collaborating with anesthesia and nurses.

For example, we have older autistic children that have extreme separation anxiety making it difficult for a nurse to push them back on a hospital bed to surgery. This nurse will step up and make special provisions for a parent to go back to the OR with the patient until they are asleep. This consideration promotes the organizations promise of a save environment for our patients and families. This candidate is very caring to staff in times of family emergencies, personal problems and need for time away from work.

Her kindness and concern for her staff make you feel you are a family member of hers. I have seen her cry and comfort her colleagues during times of lost loved ones, sick or injured children or spouse or simply having a bad day. I was stuck in Houston when my loved one was having surgery and we had to stay longer due to complications. Not only did she empathize and console me but helped me cover my shifts so I could stay and look after my loved one and not worry about my job.

Teresa Clark, Chief Nursing Officer

This nurse has been a role model for those around her for three decades. At our institution alone, she has practiced and offered sound leadership for over 25 years. She has both an advanced certification and a master’s degree. From my own conversations with this nurse, I know that she has always felt called to our profession … this calling is not something you can teach ...

While this candidate has a long history in nursing and one that illustrates her wonderful work, this past year’s contributions are remarkable. She was promoted to CNO following the retirement of a long tenured CNO. She demonstrated her strength as she held together a large nursing staff – encouraging teamwork, professionalism and collaboration during this change in leadership. She led efforts to finalize and implement a new professional development program, restructured our nursing org chart and updated our nursing practice model and nursing strategic plan. She has accomplished all of this while enrolled in her DNP program and battling metastatic breast cancer.

Still, I think her most significant contribution is her caring … which is really the defining characteristic of our profession. She cares about the children in our community, the staff she leads, the organization she works for and the profession she was called to serve.

This Great 100 nominee displays such dedication to our profession of healing hands and caring hearts that inspires me even today.

“It’s wonderful day. I thought I would never be a mom,” Kristy said. “Mother’s Day is not something I take for granted. I’m grateful to my mother and grandmother, who taught me to be a mother . I love it.”

But when you consider each child has his or her own special needs, life can be amazingly hectic and difficult. And what’s the biggest challenge for the mom of nine?

“Probably laundry,” she jokes. “Would that sound crazy if that was my answer? I think more than anything, it’s working to meet each kid’s individual needs where they are at that particular moment. And then looking ahead, some of the kids aren’t as independent as they should be when they hit that magical 18 mark. Some are not ready to go out into the world yet. Some days that’s the scariest thing for me.”

Kristy’s story began as it continues now with her husband John. They loved kids then as much as they do now, but they couldn’t have any of their own.

John was a foster care agent. He was 26 at the time and Kristy was 22 when they met Luke and Josh, 7 and 2 respectively. Then two years later, they met Kathryn and Daniel, a brother and sister who were 6 and 4 then.

“After we got them, we kind of thought we were done,” Kristy said. “We weren’t sure though and we kept our certification to get more kids placed with us. Then two years later we met a set of precious little twins – Juliana and Josiah, then 4, who were half of a sibling group with Paul and Caleb, then 7 and 5. They were in an emergency situation. Their life would be pretty demanding. We thought we could add four and we already had four, so eight sounded about right.”

But what sealed the deal was when Juliana said to John, “All my friends have a daddy. I don’t have one. Will you be my daddy?”

Maybe some could still say no, but not the Goodnights. Their hearts are too big and their skills at taking care of kids with special needs too strong. All of their eight adopted children have medical and/or behavioral needs.

The Goodnights take their children from their home in Corsicana to Cook Children’s to be treated at the medical center. Kristy jokes her kids have many “ists” – endocrinologists, neurologists, psychologists …

“We have all of our specialty care through Cook Children’s,” Kristy said. “We really appreciate the cohesiveness of care. The specialties share information with each other. One doctor sees what the other doctor has done. There’s a great consistency of care. The other thing we like is we see the same doctor every time in their specific specialty and that’s not always true with other places. And we see a slew of doctors for everything from cerebral palsy to autism to emotional issues. We see doctors for behavioral issues, intellectual issues, growth issues – a wide variety of stuff. We are at Cook Children’s on a regular basis.”

Of course with the number of kids and the challenges that each bring, Kristy admits that she sometimes wonders if she’s the best person to care for them.

“There’s always days where I think I’m not doing the best I can and I think surely I can be a better mother,” she said. “I look around and the laundry is not done and the house is a mess. And then I remember the alternative. Without us, they wouldn’t have a family at all.”

Kristy chuckles. “And then I realize, I’m better than nothing.”

Needless to say, John says his wife is selling herself way short.

“She keeps everybody grounded, including me,” he said. “He keeps me focused on what’s important and not letting things bother us that might get in the way of that fact that we’re all in this together. She’s the most loving person that I know and you can tell she wears her emotions on her sleeves. You can look at her and know our kids are extremely important to her.”

And with that kind of love, why stop at eight, right? The Goodnights realized they’d experienced so much as parents, except what it was like to raise a newborn.

Kristy and John looked at other countries, but nothing came to fruition. Then they found a story on a new spin on in vitro fertilization – adopting an embryo. The embryo had been frozen for 10 years and was made available to the Goodnights. They only knew the age of race of the parents, but nothing else. They made the decision to take the baby without knowing anything more. They were used to facing challenges and they would be up for one more challenge.

So far, the newest member of the family, Jude, has been healthy. But he's still a toddler in a house with eight other children. Kristy says that’s OK because one more person only adds to what makes the Goodnight household special.

“The love. I love having a family. There’s just so much love in this house,” Kristy said. “There’s always someone laughing. It’s so much fun. I never expected that and the way the other kids care for the baby. It’s just tied everybody together in the ends. We have sweet kids with big hearts and that’s given us the ability to love everything we’ve gone through.”

8 isn't enough ... life with 9 children

Nine children, ages 3 to 19 years old, make Mother’s Day a pretty special time for Kristy Goodnight. After all, that’s a lot of hugs and kisses to go around ... But when you consider each child has his or her own special needs, life can be amazingly hectic and difficult. And what’s the biggest challenge for the mom of nine? Click to read more.

Dr. Mom: How motherhood changed me as a pediatrician

After completing 24 years of schooling and medical training, you’d think that once I graduated from pediatric residency, I’d know a thing or two about the health of children. And I did. I knew a lot ... Then, I was blessed to have a beautiful son...who decided that I needed to be re-taught a few things about children.

And by a few things, I mean everything. Click to read more.

How being a mom shaped her practice

I am a better pediatrician because I have experienced life as a mom. I know the tears and tiredness of a new mom and so when she cries at the new baby check I can tell her it's normal and she believes me. Click to read more. Click to read more.

Thanks to a gracious act of kindness from one teenager in Arizona, a 1 year old from Joshua, Texas is no longer on that list.

Following a head injury while competing in a North Texas motocross event, Kenneth “Buddy” Wentworth III died at the age of 16 on Oct. 3, 2014. Buddy’s parents gave consent for donation. Since his death, Buddy donated his heart, lungs, liver, pancreas, kidneys, corneas and other tissue at JPS Health Network.

Eli received one of Buddy’s kidneys. Eli’s kidneys were destroyed because of massive blood loss by placental abruption, a complication of pregnancy in which the placenta separates from the uterus before birth.

Eli was one of the 134 kidney transplants that have taken place at Cook Children’s since 1993, when the organ donation program began.

The Wentworths and the Marskis met for the first time this week as part of the annual “Life Gift” flag raising ceremony that took place at Cook Children’s on April 16, 2015. The Wentworths flew from their home in Arizona especially to be there.

Darbie, Buddy’s mom, said the organ donation was Buddy’s idea.

Darbie said, “When I took Buddy to get his license, he said, ‘Mom, can I be a donor?’ My response was, ‘Dude, do you know what that means?”

It meant saving a little Eli’s life.

“Because of Buddy’s choice, we have the opportunity to raise our child and for that I will be forever grateful,”said Kammi Marski, Eli’s mom.

So how do you find “father time?”

Healthy father-child interaction can involve any number of activities, including playing a board game or video game together, attending or coaching the child’s sports games, or chaperoning a class field trip, party or school dance.

“Spending time together sends the message that you are interested in your child and enjoy his or her company,” said Joy Crabtree, Psy.D., licensed psychologist at Cook Children’s Urgent Care and Pediatric Specialties Center in Southlake. “Creating these positive memories is crucial to your child’s emotional development.”

Crabtree said it’s also important to incorporate quality time into casual, everyday experiences. Bring your child along to run errands, and let him or her help you with light yard work and other chores around the house.

For young boys especially, “goofing off” and appropriate roughhousing help instill a sense of trust in dads, which may promote healthy behaviors later in life.

“Boys tend to imitate their fathers’ parenting styles when they grow up and become fathers themselves,” Crabtree said. “For girls, having regular fatherly interaction can help quell inappropriate attention seeking behavior in their teenage years.”

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.

Jonathan has set an example for his entire family. At 11 years old, Jonathan was scheduled to compete in his fourth Cowtown, the Cook Children's 5K, event before it was canceld. And while he had hoped to place in the top three against more than 8,000 other kids, Jonathan's mom said her son has already motivated the family to achieve more goals than they ever could have ever expected.

Jonathan, his two brothers -- Elijah, 13, and Matthew, 10, -- and their dad, Juan, all run. This weekend’s race will be Jonathan’s sixteenth 5K in five years. Elijah has run in six Cowtown 5Ks and 18 total in eight years and Matthew was scheduled to run in his first Cowtown and third race since October of last year.

Juan has been inspired by his sons to run and in the process lose about 60 pounds in the past six years. He’s managed to keep the weight off by training and was going to run his first half marathon at Cowtown.

And while the family all competes at some level, it's Jonathan who has excelled the most with the most raw, natural ability. Lorena Barron, Jonathan’s mom, credits his first grade teacher, Mrs. Gaylene Chrystie, and his running coach, Cindy Rau, both at Burton Hill Elementary School in Fort Worth, for helping to motivate him to work hard.

"Jonathan liked running from the beginning," Lorena Barron, Jonathan's mom, said. "He was very good and competitive right away. So when Jonathan first started, he didn't have to try as hard. His teachers explained to be good in sports, you have to be good in school. You need to try hard in everything you do, including in the classroom. If he wanted to continue running as he got older or even someday compete in college, he would have to make good grades."

Jonathan listened. He became more focused in school and his grades improved. He became driven. Even at such an early age, Jonathan has learned to set goals for himself and work hard to achieve them, thanks to what he's learned from running. Jonathan ran the Cowtown 10k last year, the longest he had run at the time. He won his division and overcame the pain he felt from the longer distance.

"Running makes me feel happy," Jonathan said. "I liked being competitive. I like when I win, but even when I haven't won, I feel good if I know I've run my best. When I ran my first 10K, it was way harder. My legs hurt after the fifth mile. That was the longest I'd ever run. But I felt really good after it was over because I finished it."

Since he began running, Jonathan has changed in many ways from being more confident to being fit. He drinks water instead of soda now and orders grilled chicken and salad over burgers and fries. But he's not the only one who's seen the benefits of running.

"Running has helped the whole family," Lorena said. "When Elijah started running, Jonathan and my husband wanted to train with him. Being as overweight as Juan was, it wasn't very easy on him. But he kept going and now he's just as healthy as my sons. I don't run, but I walk with them. We all try to eat healthy and take care of ourselves. Running has helped to make our whole family healthier."

Now she prays for Tre’s caregivers to make her son all better.

Tre, who is 9 years old, has been seen by the Rehabilitation Services team at Cook Children’s since his parents adopted him as an infant. Most of those issues centered on his articulation skills. Tre’s history with Rehabilitation Services started with audiology and other physician specialists; speech therapy services began at 7 years old working on articulation skills. 

Then about 15 months ago, Sara Adams, Tre’s speech pathologist, received a call from Jennifer to say her work with him would have to go on hold indefinitely.

Tre was involved in a horrible boating accident. He sustained a head injury and was in a coma at another hospital. But the miracle for the Faulkner family occurred and within two weeks, Tre was up and walking.

After his accident, Tre returned to therapy at Cook Children's Urgent Care and Pediatric Specialties – Mansfield and worked with Occupational Therapy, Physical Therapy and Speech Therapy to regain skills that were lost after his brain injury.

A year later, much of Tre’s care takes place at the Cook Children’s Rehabilitation Services at Mansfield. The focus is on Tre’s short-term memory loss and his severe ADHD, as a result of the injury.

“God has blessed us so much,” Jennifer said. “The Mansfield community has been with us since the beginning, I’m so thankful. I’m also thankful for the amazing care Tre has received since his injury. At Mansfield, Tre has really been helped in many ways, through his physical, occupational and speech therapy. They have helped him so much with his memory and his balance. It’s truly been miraculous.”

The rehab at Mansfield is working for Tre. Academically, Tre’s test scores are in the average range for a child his age. His mom says he’s learning and making strides every day.

And Tre’s doing very well physically. He recently received his gold belt in karate. Makes sense for a kid who has proven time and time again how tough he is.

“The progress Tre has made since his accident is truly remarkable,” Adams said. “Tre still has some struggles with his attention and memory that impact him every day. However, he continues to improve and learn how to work through these struggles. Tre’s sense of humor, determination, and supportive family are his greatest strengths. Tre is such a funny kid! He loves to tell jokes and riddles. One of his favorite jokes is: ‘Why don’t ducks tell jokes when they are flying? … They might quack up!’”

To see how far Tre’s come since his injury it’s hard not to smile at the miracle that’s occurred and the occasional duck joke.

For more information

At Cook Children's, we provide more than 60 pediatric medical and specialty clinic offices throughout Texas. Thanks to our skilled group of clinicians who support the leading-edge technology found among our specialty services, Cook Children's is the destination when it comes to taking care of your children.

Cook Children's Urgent Care and Pediatric Specialties - Mansfield is located at:

801 Matlock Road

Mansfield, TX - 76063

To make an appointment, call 817-347-8400.

Specialty services at Mansfield inlcude:

• Endocrinology and diabetes
• Gastroenterology and nutrition
• Nephrology and dialysis
• Neurosciences
• Orthopedics
• Pediatric surgery (inpatient/outpatient)
• Psychiatry and psychology
• Rehabilitation
• Urgent care