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

Electronic scooters are often considered vehicles and must adhere to traffic regulations and local ordinances. Some cities have adopted ordinances specific to e-bikes and e-scooters.

Sharon Evans, trauma injury prevention manager, offers parents tips on how families can safely enjoy their e-bikes and e-scooters.

• Always wear a helmet: Make sure you have the right helmet. For e-bikes/e-scooters that go up to 20 mph, a bike helmet is sufficient, but parents may want to invest in a stronger helmet to protect their children better.
• Perform a safety check before each ride:
  • Check the tires. Ensure they are inflated to the recommended pressure on the sidewall.
  • Check brake levers. Squeeze them while rolling the bike forward and backward to ensure the brakes engage and stop the e-bike/e-scooter.
  • Inspect your e-bike/e-scooter for loose nuts or anything that looks abnormal.
• Follow the rules of the road:
  • Always ride on the right, in the same direction as traffic. Use the bike lane if available.
  • top and look both ways before entering a street or crossing an intersection.
  • Stop at all intersections.
  • Obey all traffic lights and traffic signs.
  • Be aware of your surroundings. Do not talk on the phone or text. Do not wear earbuds; you cannot hear what is happening around you.
• Night rides: Make sure you wear bright, reflective clothing. Ensure your e-bike/e-scooter has a light and reflectors.

“Hiding a gun under a mattress, in the closet, or on a high shelf is not safe storage,” Gonzalez explains. “Guns must be stored unloaded and locked away outside the reach of a child or teen.”

Gonzalez adds that safe storage can greatly contribute to reducing unauthorized use of firearms and gun violence among our youth.   

Cook Children’s Medical Center-Fort Worth treated 40 gun-related injuries in fiscal year 2025 (October–September). During the fiscal year 2024, Cook Children treated 62 gun-related injuries.

June 6 marks National Gun Violence Awareness Day and the beginning of Wear Orange Weekend, a time dedicated to raising awareness about gun violence prevention and honoring victims.

“Summer especially is a great time to practice the 3 T’s of gun safety: Talk, Teach, and Take Action,” Gonzalez said.

Gonzalez and Dan Guzman, M.D., a pediatric emergency medicine physician and Medical Director of the Aim For Safety® program, work together to educate the community, primarily focusing on preventing unintentional gun injuries by encouraging safe gun storage. Dr. Guzman has seen and treated an unfortunate number of children injured or killed due to firearms. As a gun owner and parent, he understands the importance of safely securing firearms.

“I don't want to watch another child die as a result of a firearm,” Dr. Guzman said.

He emphasizes that the initiative is not about advocating for or against gun ownership; the focus is on providing people with the tools and resources to be safe around guns.

The Aim For Safety® program has provided education and resources to thousands across the Dallas-Fort Worth Metroplex.

“We highlight how safe storage greatly reduces the risk of unintentional injuries, as well as how it contributes to keeping children safe during mental health crises and reducing the risk of use for gun violence,” Gonzalez said.

Between October 2024 and April 2025 alone, the program provided 252 gun safes and 206 gun cable locks to the community. This is in addition to almost 1,000 gun cable locks provided to families in the emergency department over the last year.

“That’s a total of 458 families which now have tools to keep their families safe,” Gonzalez said.

Gonzalez explains that safety extends beyond firearms such as handguns and also includes air-powered guns such as BB, pellet, and paintball guns.

“Guns should never be used without a guardian’s permission and should only be used while an adult is supervising,” Gonzalez said.

Open Dialogue: Talking to Other Parents about Gun Safety

• Keep the conversation focused on safety, not on whether someone should or should not own a gun.
• Simply ask if there are firearms in the home and if so, are they properly stored (unloaded and locked with a cable lock or in a gun safe).
  • If not, visit the Cook Children’s Aim For Safety website for tips on how to keep guns safely stored or for resources that we can offer to assist in safely storing the gun.

Aim for Safety in the Community

Aim for Safety will be out in the community throughout the summer:

• Defenderpalooza on July 12
• Fort Worth’s Premier Gun Show on August 23-24
• Scheels Great Outdoor Expo September 6-7
• If anyone is interested in a presentation, please reach out to  eric.gonzalez@cookchildrens.org

Lives Impacted by Gun-Related Injuries and Prevention Efforts at Cook Children's

• In FY 2025, Cook Children’s Medical Center-Fort Worth has treated 40 gun-related injuries
• In FY 2024, Cook Children’s Medical Center-Fort Worth treated 62 gun-related injuries
• Most non-fatal injuries were caused by air-powered guns (BB guns, airsoft guns, paintball guns, etc.), while most severe or fatal injuries were caused by handguns.
• Between October 2024 and April 2025 alone, we provided 252 gun safes and 206 gun cable locks to the community through various events.

In 2021, a surge in suicide attempts among children and teens was a call to action for Cook Children’s Health Care System.

In March of that year, a record 43 patients were admitted to Cook Children’s Medical Center – Fort Worth after attempting suicide. This staggering figure was nearly double the number of suicidal patients seen previously. Even worse, kids were dying.

In 2020, Cook Children’s recorded seven suicide deaths, marking the first time suicide was the leading cause of trauma deaths at the hospital, surpassing child abuse and car wrecks.

“We started the journey back in 2021, when we were seeing the devastating increases in kids and teens trying to take their own lives,” said Wini King, co-host, executive producer, and Chief of Communications and Employee Connections at Cook Children’s.

The Joy Campaign was launched as a suicide prevention communication initiative. Joy, an acronym, reminds us all to ‘Just Breathe,’ ‘Open Up,’ and ‘You Matter.’

After a year of articles, media interviews, and speaker requests from the public, the Joy Campaign grew into the Raising Joy podcast. Feb.11 marks the 100th episode.

Hosted by King and Kristen Pyrc, M.D., medical director of outpatient psychiatry at Cook Children’s. The podcast tackles tough topics like depression, anxiety, stress, bullying, and social media.

Dr. Pyrc recalls treating patients as young as 6 and 7 for suicide attempts.

Anecdotal stories like this one are backed up by data collected through Cook Children’s Emergency Department (ED). In 2022, more than 30,000 patients in the ED, aged 8 and up, were screened using the Ask Suicide Questions (ASQ) tool. The results were alarming. Six hundred and forty kids screened positive for suicide risk and a crisis contact information sheet was provided to more than 2,000 families.

Dr. Pyrc and King recall seeing the shocking data.

“It was right here in our very backyard, in front of our very eyes,” said King. “It was a lot.”

Hard conversations

Three years later, the Raising Joy podcast has listeners in 60 countries and more than 23,000 downloads.

King and Dr. Pyrc interview medical professionals and families who share their personal experiences. They both say those personal stories have been the most impactful.

“We have had a lot of people who lost babies, who are taking care of catastrophically ill babies, but still manage to smile, encourage and inspire,” King explained.

Dr. Pyrc adds some of her favorite episodes have been speaking to teens, and hearing their insights.

While the goal is to make a difference in the community, Dr. Pyrc shared that these conversations have also impacted her parenting.

One of her most memorable guests was Brad Hunstable, a Fort Worth father who lost his son Hayden to suicide just four days shy of his 13^th birthday. Hunstable was one of the first people to open up and share his story for the Joy Campaign. He later appeared as a guest on Raising Joy.

“That was very impactful for me, and it changed more how I parent than how I practice being a psychiatrist,” explained Dr. Pyrc.

She shared how this episode impacted her conversations with her kids, especially when they are sad or seem down. Dr. Pyrc emphasized the importance of open communication and nonjudgmental responses to children’s questions.

“I do not want a child ever to think that there is anything that they can do or say, that would justify them having to think, ‘I need to because my mom or dad are disappointed,’” King said.

While the conversation around mental health has increased since 2021, the need for resources continues to rise.

In 2023, Cook Children’s screened more than 32,000 patients in the ED with the ASQ tool. Of those, 713 screened positive for suicide risk and a crisis contact information sheet was provided for 2,221 kids struggling with sadness and worry. Twenty-four children were suicidal but were visiting the ED for a different medical complaint.

While 2024 data is still being compiled, Dr. Pyrc and King continue to focus on informing and educating the public about mental health. King hopes that parents can relate and find solace in their own experiences by hearing from others.

“Hearing the incredible life experiences of others helps you understand your circumstances are not impossible,” King said.

Raising Joy has inspired many parents and families across the world to be more open about their mental health needs and how to seek guidance. Listen to the amazing guests and stories on Apple Podcast or Spotify here.

“It’s an OGT gene that’s never been discovered,” explained Brandon Ezernack, Hunter’s dad. “He’s just kind of writing his own story as he gets older.” 

The Journey to Cook Children’s 

 At an early age, Hunter had severe acid reflux. Brandon and his wife, Lori, sought treatment for Hunter in their home state of Louisiana. They went from hospital to hospital until they were transferred to a genetics doctor at New Orleans Children’s Hospital.  

“It came back unknown, they’d never seen it before,” said Brandon.  

They were recommended to try a children’s hospital in the Dallas-Fort Worth area. As they searched, Lori’s cosmetologist aunt explained her nephew's case to one of her clients. They recommended Cook Children’s Medical Center. 

“They got a bunch of doctors together and said you know we’ve never seen it before, but we want to take it on,” said Brandon. 

That was six years ago.  

“He’s happy-go-lucky,” said Brandon. 

Full circle 

It has become a family trip. Hunter, Mom, Lori, Dad, Brandon, brother, Aiden, and grandma, Janet, pack up the car and head to Fort Worth. They plan all of Hunter’s appointments in two days, sometimes spending more than eight hours at Cook Children’s. 

But it’s not just medical appointments. They make sure to schedule an appointment with Jasmine Villarreal at Mirror Mirror.

“We just try to bring him here and give him, like a little safe space,” said Villarreal, manager, and stylist at Mirror Mirror.  

Hunter is nonverbal and in a wheelchair. Brandon has tried taking Hunter for a haircut in their hometown of Shreveport, but finding a hair salon to be accommodating has been difficult. 

“We’ve had people just look and as soon as we walk in, they're like, hey, we're going to go take a break right now,” said Brandon.  

Six years ago, Brandon stuck his head into Mirror Mirror and asked if they could cut Hunter and Aiden’s hair. He explained Hunter’s condition, which sometimes means he may kick, scream, or throw stuff. Villarreal didn’t skip a beat. She put the family at ease. 

“And I'm like, it’s fine, we got this. He'll be fine,” explained Villarreal. 

Villarreal drapes the wheelchair with plastic to avoid getting hair on it. Next to her, a tray with clippers, a comb, a spray bottle, and scissors ready for the haircut itself. Plus, she adds a few more extra combs for Hunter to play with and Villarreal gets the hair dryer ready too. The sound of it they have learned helps put Hunter at ease. 

She places a cape on Hunter.  

“However long it takes, it can take 30 minutes, and it can take an hour,” said Villarreal, “We get it done.” 

Villarreal has been cutting Hunter’s hair for as long as she has been at Cook Children’s. She says it is a fulfilling job. Villarreal and her staff work to ensure patients and adults get an experience just as if they were at a salon outside of the hospital.

“I want them to be able to come here and feel special,” said Villarreal. “We see kids with all different situations. We’re not scared. We welcome them.” 

The salon offers haircuts, manicures, pedicures, hair color, and even a blowout. Their services go beyond that of a traditional salon, helping patients get EEG glue out of their hair without having to cut it off and detangling hair after an accident. 

“In a way, it makes me feel special that I can be that person to just give them a haircut and make them feel special and pretty,” said Villarreal. 

Chatting and smiling Villarreal, Brandon, and Lori kept Hunter occupied as he got his haircut. In less than an hour, Hunter was sporting his new haircut.  

Two days at Cook Children’s may seem like a lot, but Brandon explained the hospital is more than a medical facility. 

“We walk across the hall [the Child Life Zone], and they got a bunch of entertainment stuff for the kids to do,” explained Brandon, “and then we just make a day of it here and go play in the playground.” 

For the latest information on closures and delayed openings visit here. 

Today we remember and celebrate the life and leadership of Dr. Martin Luther King Jr., who showed the world how to fight battles not with violence, but instead with peace.

As we begin year three of the global pandemic and carry the burden of COVID-19, we understand that it’s not always easy to find peace in your own world right now.  Life feels heavy and sometimes overwhelming. On this day, I’d like to pause and reflect on Dr. King’s legacy and his message of love, compassion and unending kindness.

Did you know that MLK Day is the only federal holiday designated as a national day of service? Americans are encouraged to volunteer to engage and improve their communities. Dr. King’s example is our call to action.

Dr. King said, “Life’s most persistent and urgent question is, ‘What are you doing for others?’”

As an employee at Cook Children’s, you are living up to Our Promise to improve the health of every child, every day. This is such a special organization with an incredible culture of love, healing and togetherness. But I also know so many of you go beyond our walls to be active in your local communities, schools, churches, nonprofits and more.

While you continue to work side by side, it’s more important than ever before to find ways to collectively serve and be kind to one another. I invite you to ask a peer, “How are you doing?” and then really listen to their response. A small act that can go such a long way. We also need to turn inwards and give ourselves grace and patience during these difficult times.

Today I hope you are inspired to help your coworkers, neighbors or strangers as Dr. King would because your efforts will not go unnoticed. It all starts with one gesture.

You matter and your service and kindness is much needed at Cook Children’s and in this world.

The last few weeks have been hard, to say the least. Although the new year brought hope that we would begin to look to a “return to normal” after one year of the COVID-19 pandemic, things haven’t felt so positive. It is only natural to yearn for what once was - allowing my kids to participate in group sports without the worries. To do in-person learning without the fear that we will receive an email indicating our child was exposed to the virus, and to go on a dinner date with my husband (to make up for the canceled date from last year as the lockdown and worries began).

In the last few weeks, losing my own grandmother to COVID-19 reminded me of all the families that have experienced a loss of a loved one in the last year. Although this happens routinely as part of the cycle of human life, I am reminded that there has been “extra” loss of life, and likely many more families impacted by loss than would have occurred otherwise.

The loss of a loved one is experienced at different stages for most. A difficult part of this process sometimes goes unnoticed but is worth highlighting. Being a parent and responsible with the difficult task of explaining death to a child in a way that is developmentally appropriate is not easy.

The best way to approach this situation is to be aware of how children understand death and this will help you pick the right thing to say. It’s important to remember that even young children who don't understand death will react to grieving parents. Older children will themselves grieve. Parents should support their children through this process in order to resume their lives without significant distress or interruption.

Children have a different understanding of the finality of death. Your approach to discussing death will depend on your child's level of understanding of four main concepts of death:

• Irreversibility (i.e., death is permanent)
• Finality (i.e., all functioning stops with death)
• Inevitability (i.e., death is universal for all living things)
• Causality (i.e., causes of death)

Babies and Toddlers

Infants and toddlers do not understand death but do sense what a caregiver may be experiencing. It is important to take care of yourself and progress through your own grief while maintaining routines that will help foster healthy progress through the life event.

Preschoolers

Preschoolers see death as temporary. They are concrete thinkers and usually see things for what they appear and hearing things literally. It is important to avoid euphemisms like, "She has gone to sleep," or "…traveled to the great beyond." Children at this age cannot understand these phrases and can sometimes even generate fears about traveling or sleeping. Be prepared for this age child to ask again and again where the deceased is and or when they will come back. Always answer with a clear message, which of course can be softened with the mention that the memories will remain. At this stage, children typically have a hard time talking about what they feel and their fears may come out at unexpected times such as during play.

School Age

School-age children begin to understand death as a final event but can have difficulties understanding it is universal. Make sure to offer clear, simple, and honest explanations about what happened and allow them to ask questions. Help them when they have difficulties finding the right words to explain their feelings. At this age, they may not understand the causality of death and they may personify death. Sometimes at this age, they may worry they will be left alone and begin to think about the death of a significant caretaker. Things that are important to do at this point include:

• Remind your child that not everyone who gets sick will die.
• Reassure them of your health.
• Let them know how many people in their life care for them.
• Support children to do things to reduce their anxiety and be sensitive that they may not want to talk or think about the deceased because it is too painful.
• Take care of yourself and make sure you have support.

Adolescents

Adolescents understand death the way adults do but can have difficulties or be resistant to expressing their feelings. They begin to think abstractly and this can cause some difficulties which can lead to risky behavior or even guilt about being alive. Supporting teenagers in finding healthy ways to express their feelings is very important.

Being aware of normal responses to death, as well as signs that they may need professional help, is an important part of supporting the grieving child. Younger children can revert to immature behaviors or angry outbursts. These typically are a result of unexpressed emotions such as frustrations or confusion. In school-age children, difficulties concentrating, sleeping, or physical complaints including stomachaches and headaches can occur. Teens often experience a wide range of emotions including sadness, anger, guilt, and helplessness. Teens may either withdraw or do the opposite, and engage in risky behavior.

This time is difficult for the entire family and it is important to take the time for yourself to deal with the grief. Kids of any age can sense the emotions of a caretaker and respond accordingly. If you ever have a concern that the child is experiencing extreme symptoms and/or the symptoms of grief are not resolving, ask your child’s pediatrician for help.

Seizures aren’t as uncommon as one might think. In fact, one in 26 people in the United States will develop epilepsy at some point in their lifetime, according to the Epilepsy Foundation. Apply that statistic to a typical school classroom, church, workplace or family gathering, and it’s likely that at least one individual you know or love may have seizures.

Because a seizure can occur any time, anywhere, without any warning at all, it’s important for those with epilepsy to have an action plan for emergency seizure response, and for those close to them to be familiar with that plan. Seizure Action Plan Awareness Week, which kicks off Monday, Feb. 8, in conjunction with International Epilepsy Day, aims to demystify seizure disorders and arm those who live, work and spend time with someone with epilepsy with the information they need to help during a seizure emergency.

“Having a seizure action plan helps those close to you know how to best protect you from injury during a seizure, gives direction on the most appropriate medical response or rescue therapy and provides important information to first responders about your seizure type and medical condition,” said M. Scott Perry, M.D., epileptologist and medical director of neurology and the Genetic Epilepsy Clinic at Cook Children’s Medical Center. “These situations are often high-stress, so being prepared with a clear and precise plan will help you and those who love you confidently and successfully manage your epilepsy.”

Make A Plan

Some seizures, especially those that are prolonged or occur in clusters, can be life-threatening. Having a plan that dictates accurate intervention reduces response times, and decreases the risk of death and the need for additional rescue medications, according to the Seizure Action Plan Coalition.

A good plan includes tailored guidelines specific to the individual’s seizure type, medical circumstances and needs. It clearly and concisely organizes all of this vital information into a document that can be put into the hands of loved ones, friends, co-workers and caregivers so they are prepared to respond in the event of a seizure.

Components of a seizure action plan should include:

• Information about your seizure type.
• How one should respond to your seizures to help protect you from injury and get you the appropriate medical assistance.
• When to use rescue therapy medications, their names and dosing information.
• The type of help you need following a seizure and special instructions for first responders.
• A list of seizure triggers and other important information about your condition.
• Emergency contacts.

Parents of children with epilepsy should have a plan for their child. Anywhere the child frequents—be it school, church, sports activities or camp—should have a copy and teachers, school nurses, coaches and counselors should be familiar with your child’s plan. Experts say it’s important to include children in the planning process to help them feel more confident and secure that they’ll get the help they need when a seizure occurs.

“Seizure action plans are so useful for our families,” said Aubrey Esparza, neurosciences clinical nurse leader at Cook Children’s Medical Center. “They give them a guide on the best plan of action during those emergency situations when you really need a step-by-step approach to provide the safest care so that the patient has the best possible outcome.”

Enhancing Action Plan Efficiency

Esparza is spearheading an effort at Cook Children’s to improve the process of developing, accessing and updating seizure action plans for patients. Currently, paper plans are scanned into a patient’s electronic medical record making them difficult for clinicians to electronically search, track, edit and update. In some cases, there may be multiple copies—some outdated—in different places within a single chart. Working together with Esparza, a multidisciplinary team of nurses, physicians and IT professionals are developing a digital tool for building a seizure action plan directly within a patient’s electronic medical record.

The digital enhancement would mean patients’ action plans would be located in a dedicated space within the medical record and allow clinicians to easily search and update electronically. The tool will alert health care providers when it’s time for a patient’s annual action plan update, ensuring that patient caregivers have the most up-to-date rescue instructions at their fingertips. The plan can be printed for use at home, school or other places the patient frequents. The electronic seizure action plan tool will launch in 2021.

“The thing parents report most frequently about seizure action plans is that they have increased confidence in being able to manage their child’s seizures at home because they have clear-cut instructions on what to do when that seizure occurs,” Esparza said. “It helps them know when to be concerned, when to give medication and when to call 911.”

Information about Seizure Action Plan Awareness Week and the Seizure Action Plan Coalition, along with tips and tools for creating a personalized plan, can be found at seizureactionplans.org. The Epilepsy Foundation also provides helpful resources about aiding someone having a seizure at First Aid for Seizures Procedure.

Log on to cookchildrens.org to learn more about Cook Children’s Comprehensive Epilepsy Program, recognized by the National Association of Epilepsy Centers as a level 4 epilepsy center providing the highest level of care for patients with complex epilepsy.

As COVID-19 continues to inundate our society, there arises the question of when to start the countdown clock of quarantine. Let’s say mom gets sick with COVID-19 and stays at home as she is supposed to. Centers for Disease Control and Prevention (CDC) guidelines state children should avoid physical contact with the sick parent.

For children staying in the home of a sick parent, the CDC recommends:

• Both parent and child (over age 2) should wear a mask while in the same room

• Wash your hands frequently for at least 20 seconds

• Try to stay six feet apart, if safe to do so

• Increase ventilation by opening a window

• Disinfect high touch surfaces (phones, remote controls, counters, table tops, doorknobs, bathroom fixtures, toilets, tablets, bedside tables, light switches) often

• Avoid sharing personal household items (dishes, cups, eating utensils, bedding, towels)

• Watch closely for any symptoms of COVID-19

Now let’s say dad has COVID-19, and his symptoms started seven days after mom became sick. What do you do about children returning to day care or school?

The CDC states anyone who has had close contact with someone with COVID-19 should stay home for 14 days after their last exposure to that person. What is not exactly specified is what to do if the COVID-19 positive parent and asymptomatic children are in constant contact in their own home. I recommend a safe watch and wait approach, practicing the above recommendations and if the child is still asymptomatic at the completion of 14 days after the parent’s 10 day isolation ended (which is a total of 24 days after the parent became ill or had a positive test), then they can resume day care and school attendance. The 14-day countdown would begin at the end of the most recent family member’s 10 day isolation period (in our scenario that would be dad’s). And as COVID-19 can slowly trickle through the household, this can be a month-long lockdown.

With any sick symptoms in your child following an exposure of COVID-19, they should see his or her pediatrician and get tested. If your child does test positive for COVID-19, they can be around others 10 days after symptoms first appeared, as long as their COVID-19 symptoms are improving and they have not had fever in 24 hours without the use of fever-reducing medications.

Well, we made it to December. What a year! Ups and downs, good and bad.It’s nearly the end of 2020. After a more casual and calm Thanksgiving, it’s now time to gear up for all the December celebrations including Hanukkah, Christmas, Kwanzaa and New Year’s Eve.

It’s a magical time and can still be magical even if we have to celebrate in a different way this year. I really want to stress how important it is to just stay at home with only your family unit. Rethink those travel plans; you can instead Zoom and FaceTime extended family members. Don’t get mask fatigue, continue to wear it properly anytime you leave the house. Get some cute matching holiday themed mask patterns and keep the kids interested in them. Buy pine tree or gingerbread soaps and make hand washing a delight to your senses.

Allow time this Christmas and holiday season for a little more down time, less stress, and just be present with your core family unit. No need to make another large meal; change it up with Christmas brunch, enchiladas, or home made pizzas. I think I’m making brunch!

Ideas for kid-friendly activities:

1. Snowball fight: even if it’s not a White Christmas here in North Texas, crumble up paper or empty out the sock drawer!
2. Bake and decorate Christmas cookies and be ready for sugar overload.
3. Board games: bring out the old favorites and play several rounds of age-appropriate games.
4. Christmas movie marathon!
5. Get active outside. Even if it’s brisk, put on that winter-weather gear and walk the dog, take a family bike ride, or play flag football.
6. Go on a drive around the neighborhood to look at Christmas lights.
7. Enjoy a concert at home: many cultural centers now offer live-streamed concerts in the comfort of your home. Check into your favorite or even a new cultural event.
8. Reverse presents: have the kids clean out their toy boxes and drop off at a local donation center.
9. Make Christmas cards and drop off at nursing homes or assisted-living centers, to residents who likely will not see their own families for a big Christmas celebration.
10. Put on a fashion show! Pull out your old prom dress, dance costumes, or letterman’s jacket and let the kiddos take turns in mommy’s and daddy’s clothes. Tell them the story of the clothing item and why it’s so special.
11. Lights out! Sit in only the light from the decorated tree, candles, and fireplace, and read Christmas books together.

This year is one for the record books. Let’s do our part to give our children some happy memories this holiday season. It will put a smile on your face too.

“We’ve seen gun sales increase significantly nationwide over the past several months,” said Dan Guzman, M.D., a Cook Children’s emergency physician. “Now, with many children being in the home for longer periods of time, curiosity and boredom are something we need to expect. We have to stay vigilant and make sure we’re doing everything we can to prevent a tragic accident.”

According to Small Arms Analytics and Forecasting, this year’s gun sales have already eclipsed 2019 by more than one million firearms.

“With the hunting season about to begin in earnest and the presidential election season about to start in earnest as well, 2020 will without doubt exceed the previous high of 16.6 million units sold in 2016,” SAAF chief economist Jurgen Brauer wrote in an emailed statement provided to FOX Business.

Last year, 41 children were admitted to Cook Children’s for injuries related to guns (including handguns, rifles, shotguns and other firearms such as BB guns.) With 23 children already injured in 2020, Dr. Guzman fears he could see more of these patients this year than last.

“I think most people think this ‘won’t happen to us’ because we’ve taught our kids to never touch guns,” Dr. Guzman said. “But if you aren’t taking the proper precautions as the adult and parent, it’s probably only a matter of when, not if, your life may be affected by an unintentional discharge involving someone you know, and maybe even your child.”

Building awareness for gun safety is a passion for Dr. Guzman. He’s the medical director of the Aim for Safety program at Cook Children’s, which promotes firearm safety for children. The program, which has been featured in several news stories, is a multi-step interactive experience that provides parental awareness and teaches children the steps they should take when they encounter a firearm.

“As parents need to feel comfortable having open-ended conversations with others where our children may play and stay,” he said. “That includes family members and close friends. Don’t be afraid to ask if there’s a gun in the home and if so, how it is stored. Keep the conversation focused on safety and not politics.”

Dr. Guzman offers these safety tips:

The 3 Ts of firearm safety and children

Talk – This includes your family, neighbors and friends. When your child visits other homes, ask the owners if there are guns in their homes and how they are stored. Dr. Guzman said this question is not to be insulting, but to keep your children safe from unsecured firearms.

Teach – Have a conversation with your kids about what to do if they see a gun:

• Stop
• Don’t touch the gun
• Run away
• Tell someone

Take – Dr. Guzman is asking gun owners to take action and store their firearms properly. And, to take personal responsibility for our children’s safety.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

According to Nicholas Rister, M.D., an infectious diseases pediatrician at Cook Children’s, anecdotes of COVID-19 parties are circulating the medical community nationwide. While he says we have not seen any confirmed cases of COVID-19 from such gatherings here in Fort Worth, he wants parents to know that we do not recommend intentionally getting COVID-19 given the uncertain benefits and potentially high-risk for harm.

"Historically, getting exposed to a disease as a protective measure is rarely indicated, but has occurred in the not-too-distant past with chickenpox," Dr. Rister explained. “We don’t recommend chickenpox parties now that we have a vaccine, but immunity was lifelong with those antibodies. With COVID-19, the immunity could be temporary and incomplete, so the benefit is unclear and maybe not what families are wishing for.”

He says even though children typically don’t get as sick as adults, there’s still a severe risk that comes being exposed to the disease.

“Most children do well compared to adults, but some kids do very poorly,” he said. “Some kids need to be intubated and end up in the hospital and could die, so just because most kids do well doesn’t mean your child will.”

And knowing which children will do well is still a mystery. Dr. Rister says we still have a lot to learn about COVID-19 and doctors don’t always know why one child ends up extremely ill while another may have mild symptoms.

“It’s hard say your child is truly safe or completely healthy and when exposed to the virus will turn out fine,” he said. “There’s certain cases where we know your child is going to be at a higher risk, like if your child has cancer, but there’s other children, who as far as we knew were completely healthy, but they got very sick and needed to go into the ICU. There’s almost certainly more to that story, but we couldn’t tell there was any other major illness even with lab work being done, so we wouldn’t expect parents to know either.”

We assume parents who may consider sending their child to a “COVID party” may be trying to take some control of a situation that is truly out of their hands. But Dr. Rister says all of that assumed control will go out the window when their child is admitted to the hospital.

“You’re now at the hospital and things can get out of hand pretty fast,” he said. “Especially with the numbers so high right now, this is probably the worst moment to be engaging in that behavior.”

So bottom line is the risk of intentionally exposing yourself or your child to COVID-19 far outweigh any potential reward and should never be considered.

Lauren, who was diagnosed with leukemia in 2017, said Poehler was funny, encouraging and relatable. For about 40 minutes, the two talked about their families, favorite TikTok videos and staying at home during quarantine.

Since being diagnosed with cancer, avoiding germs and public places has become a part of life for Lauren. Poehler asked the teen if she had any advice for those of us who are struggling with the new changes in the world.

“You find the things that calm you down and relax you,” explained Lauren. “Spend time with your family, that’s what I do and it’s got me through some bad times.”

The teen also told Poehler about her dreams of becoming an anesthesiologist, which she attributes to her experience as a surgery patient at Cook Children’s.

“Medicine is so cool,” Poehler told Lauren during the chat. “I’ve talked to a lot of kids who have to go through a lot of procedures and they get interested in medicine because they have experience with it that a lot of young people don't, and they see how they could make a difference. It's really cool.”

Lauren asked Poehler questions about everything from her career path to what it’s like being an actress and comedian. She also asked Poehler what inspires her. Her answer: working mothers.

“Moms who have to work and raise kids, especially during these times. There’s a lot of mothers who are working hard,” Poehler said. “I’m also very inspired by health care workers who are in the trenches and can’t see their own families because they have to be safe. I’m very inspired by people who put their lives on the line, risk their lives for people.”

Last month, Children’s Miracle Network Hospitals named Poehler a CHANGEMAKER, which is an exclusive list of celebrities, influencers, corporate leaders and advocates who have positively impacted children’s health. According to the organization, the individuals and groups named have made a difference in the health and well-being of children, specifically sick and injured children treated at children’s hospitals across North America. 

“I had my chest bone ripped open. It’s going to hurt,” Martin, 21 years old, said. “For a little while, I wasn’t sure if I had done the right thing. But looking back on it, I’d do it again. It may not have been the smartest choice, but it’s the one I made. It’s the one I’m living with, and I’m happy with it.”

The choice Martin made wasn’t based necessarily on health or even convenience. It was to continue to dive. Since he discovered diving at 6 years old, the sport became Martin’s passion. He won the UIL 6A State Diving Championship as a senior at Midland High, became the first full-time diver in school history at Texas – Permian Basin, and qualified for the NCAA Division II Championship in college. Now he wants to achieve one more thing – a national championship.

And all the while he’s competed at the highest level, he’s also been a heart patient at Cook Children’s. Martin has Shone’s Complex, a rare congenital heart condition that involves multiple valve problems. He received his first heart surgery at only 6 days old.

His doctors have balanced his love for his sport with what’s best for Martin’s health.

Last year, Martin received his latest surgery. Prior to the operation, doctors gave him two options. The smart choice for most people is a mechanical valve, meaning he may never need another surgery again. Once he has that surgery, Martin needs blood-thinning medication for the rest of his life. Running, walking or riding a stationary bike would be OK with that medication. Still, more extreme sports, including diving, could place Martin at a high risk of life-threatening bleeding.

Martin chose the second heart valve replacement option: a prosthetic, or tissue, valve. With the tissue valve, Martin will need another surgery someday, maybe even within the next years. Still, he won’t have to take blood thinners.

Most importantly, for him, at this point in his career, the prosthetic tissue valve allows Martin to continue to dive.

“My parents were in the room with me, and I didn’t even talk it over with them. I was like I know what I’m going to do. I’m signing up for a second (surgery),” Martin said. “So I went and got a prosthetic valve, a tissue valve. As soon as I decided that I said, ‘OK, this is my next to last surgery. Hopefully, I will never be getting another open heart surgery … after the next one.’”

Scott Pilgrim, M.D., a cardiologist and medical director of the Cook Children’s Adult Congenital Heart Disease program, began seeing Martin in 2018. Dr. Pilgrim said he wasn’t surprised by Martin’s decision to go with the tissue valve. Dr. Pilgrim knows that the choices they are making center around Martin’s desire to compete at the highest level.

“We’ve had very long conversations concerning Garret’s heart problem. We’ve had some interesting discussion points about what his long-term plans are with regards to diving,” Dr. Pilgrim said. “It’s my understanding that he’s quite good at what he does, and we didn’t want to remove him from what he loves. And so we are trying to make a decision that’s best for him medically, but also allow him to achieve the goals that he wants to go for in his life. I think that’s where we were in deciding to put in a bio-prosthetic valve or a tissue valve.”

As he arrives at Cook Children’s Mansfield Urgent Care and Pediatric Specialties clinic, Martin is the oldest patient on that particular day. With his scruffy beard and sweat pants, he looks like exactly what he is – a college student. Still, his age doesn’t make him feel any less at home at Cook Children’s.

“When I was a kid, this place made me feel safe, and as an adult, I know that this is the best place I could be for whatever I need,” Martin said. “I love it here. Now don’t get me wrong. I don’t want to stay, but if I have to be at a hospital, this is the only hospital I want to be at.”

Martin appreciates everything done for him at Cook Children’s. As he heads toward the end of his diving career, he has only a few goals left to accomplish. One of those is winning a national championship.

Then he can move on with a new life, making decisions based solely on his health. But don’t expect him to slow down. He’ll only be beginning the next chapter of his life, with a major in mechanical engineering.

“You don’t have to let anybody limit you. The only person that can tell you what you can and can’t do is you.” Martin said. “Granted, if you’ve got a condition, you need to be mindful of that. Make sure you take of yourself. But if you know you can do something, don’t let someone tell you, you can’t.”

That’s good advice that he’s seen first-hand from his medical team at Cook Children’s.

Tracy Jensen often thinks about her son, Ethan. He was someone with an amazing aptitude for learning. “He was a boy who had eyes to notice others who, like him, were in pain and suffered silently, Tracy said. “He was a boy who had the heart to care.”

Ethan never stopped caring about life. It was just the pain became too frequent and too painful for him. Ethan suffered from muscle pain in his back and right leg. At 5 months old he had a fatty tumor removed from his spine. His spinal cord was unable to be untethered and the scar tissue that remained was also troublesome.

Tracy and her husband, Eric, wonder when their son’s suffering began. Was it before his birth? Was it at 5 months old when he had the surgery? Was it later as scar tissue tangled the cord?

As they became aware of their son’s pain, they tried to help but they weren’t sure how, other than with over-the-counter medications, massage therapies and hugs.

Ethan didn’t really know how to help his pain and neither did most adults in his life. When he asked for medication or begged to lie down or go home, his requests were typically met with scoldings for him at school. Most didn’t understand how such a usually active child could truly be suffering.

Over time, Ethan learned to mask his pain.

“A child in chronic pain who is continually misunderstood is going to have emotional struggles such as depression,” Tracy said. “It is not reasonable to expect a child to know how to understand these issues, and my son was no exception. He struggled to process the facts of his life and this caused him to be more and more frustrated.”

Before he entered middle school, Tracy found a book on healing a child’s chronic pain. She continued to research and found that Cook Children’s offered a pain management program. It was there that the family met Artee Gandhi, M.D., medical director of pain management.

“Dr. Gandhi and company were incredibly responsive and devoted to Ethan's needs,” Eric said. “He was enamored with her in particular because she took his interests seriously and treated him as a young man rather than a child. However, Ethan was not always honest with her about the severity of pain he was experiencing. He sometimes believed that the doctors would not believe him or that they would think he was exaggerating his pain level to get medications.”

All through high school and beyond, Ethan studied science online. He taught himself subjects such as organic chemistry, DNA and gene therapy, and pharmacology. He learned how drugs, and different doses, acted and interacted in the body. He thought he understood enough to be safe with whatever he used for pain. He thought he was in control of his pain as he learned to manage it himself. He bought over-the-counter meds and used them off-label. He found ways to obtain prescription pain medication without a prescription.

The pain management team knew Ethan's level of self- education made him a challenge. Dr. Gandhi warned him about self-medicating and the dangers. Unfortunately, like many in their late teens, Ethan believed he was indestructible.

Ethan never stopped coming to clinic, but as time progressed he began to cancel and reschedule appointments more frequently. His parents believe that by mid-2015, Ethan thought surgery was his only chance for relief. The surgeons were able to straighten a significant portion of his lower spine regarding the pain, and as he was tapered off of his pain medication he began to once again self-medicate.

Eventually, drugs, especially opioids, were the only things that made him feel better. It was only slightly better, but that was OK for him, at least for a while. After the realization that his surgery failed to entirely alleviate his pain, Ethan became increasingly afraid of how his pain would continue to impact his life. He was afraid of what others would say, or what they thought of him. He believed no one would understand. He ultimately decided that he would have to treat his pain himself.

According to the Medical Examiner, Ethan died of mixed drug toxicity.

“We are only now looking back and asking ourselves if we could've done much better,” Eric said. “That day, my son was freed from his pain, but our pain would just be beginning.”

About the source

Artee Gandhi, M.D., is a pediatric pain management specialist and anesthesiologist. She has trained across the country including residency at the University of Missouri and fellowship at Stanford Univeristy. Cook Children's Pain Management program cares for infants, children and adolescents with chronic and acute pain. C​ook Children's is one of a few children's hospitals in the U.S. providing a comprehensive pediatric pain management program.

About Pain Management

The Cook Children's Pain Management program uses a team approach in caring for infants, children and adolescents with chronic and acute pain. Cook Children's is one of a few children's hospitals in the United States providing a pediatric pain management program. 

Our team includes a board certified anesthesiologist trained in pain management, a licensed clinical social worker specializing in psychophysiology, a dedicated physical therapist and pain management nurse coordinator.

Because of our team approach, patients will see their physician, physical therapist and psychophysiologist in one visit. 

Patients can make an appointment and physicians may refer a patient by calling our offices at: 682-885-PAIN (7246). New patients, for your convenience, please have your insurance information ready when you call.

James saw Nickolas with a football. He’d waited a long time to throw and catch a football once again with his dad.

It wasn’t that long ago that Nickolas was in tears from the sharp, stabbing feeling in his abdomen. The nerve block procedure he’d just awoken from did little to ease his pain. Groggy from anesthesia, he didn't know what he was saying to Cook Children's pain management physician, Artee Gandhi, M.D. He only knew that the years he'd spent laying on the couch because it hurt too much to move had to end.

"He kept saying 'please help me, you're all I have Dr. Gandhi, you have to help me,'" said Julie McCanless, Nickolas' mother.

The pain in the upper right quadrant of Nickolas' abdomen began suddenly in 2011, when he was just 10 years old. Though he was an active child who enjoyed playing football, there was no injury or incident the family could point to as the trigger for his pain. His parents began searching for someone who could provide a diagnosis and also relief. Despite seeing physicians in Texas, Oklahoma and even Minnesota, no one could tell the North Richland Hills family what was plaguing their son.

"It was out of control. He couldn't play sports anymore. It affected his appetite, his mood, nothing seemed to help," said Julie.

The family tried everything they could think of to ease the pain. Essential oils, massage therapy, acupuncture, they even visited a chiropractor, but none could offer Nickolas reprieve. Out of ideas, they turned to a Dallas pain clinic.

"They put him on every kind of pain medication you could think of from hydrocodone to ibuprofen, Tylenol, all the way to oxycodone and oxycontin," said Julie.

She says the drugs gave him some comfort, but left Nickolas with zero quality of life. He was often too drowsy from the medication to interact with family or friends. Attending school was also made difficult. The McCanless family spent nine months trying to find a prescription that would help without the negative side effects, all while hoping someone would one day give them a diagnosis. Then they turned to the Pain Management program at Cook Children's, one of only 35 pediatric pain clinics in the United States.

Dr. Gandhi helped launch the Pain Management program seven years ago. At the time, she was the only pain management physician at Cook Children’s and would visit patients in their rooms while carrying charts in a roller bag. The program has since grown into a multidisciplinary department complete with two board-certified physicians, clinical, physical and massage therapists, nurses and a biofeedback therapist. Instead of treating pain solely with medication, Dr. Gandhi and her team aim to help patients manage it with relaxation techniques, diet, exercise, lifestyle modifications and sleep.

In Nickolas’ case, Dr. Gandhi used many of these treatments as well as nerve block injections, which interrupt how pain signals are sent to the brain. He’d undergone these injections at other hospitals, and they usually offered temporary relief.

“We decided to try the nerve block injections, but every time it would wear off the pain would return, ” said Dr. Gandhi.

She started to think that Nickolas might have a rare condition known as abdominal cutaneous nerve entrapment syndrome (ACNES). It occurs when a nerve becomes ‘entrapped’ in the abdominal wall. Because it’s not common, ACNES is often overlooked and misdiagnosed for a gastrointestinal issue. Dr. Gandhi knew she would have to think outside of the box in treating Nickolas if she was going to keep her promise to him.

“She said she wasn’t going to give up and she didn’t. No matter how many times the pain blocks failed, she would try to find something else,” said Nickolas.

Dr. Gandhi’s search for a cure led her to believe that surgery might be the answer they were all looking for. She tuned to Chad Hamner, M.D., Trauma Medical Director at Cook Children’s for help.

“I told Dr. Hamner what I thought Nickolas had and that a neurectomy may be helpful,” said Dr. Gandhi.

A neurectomy is performed by removing all or part of a nerve. Dr. Gandhi thought that by removing the nerve she believed was ‘entrapped’ that his pain could be stopped. Dr. Hamner agreed to meet Nickolas to see if surgery was a feasible avenue to explore.

“He did some more investigation as well as an exam and decided to do the surgery, and low and behold, it worked,” said Dr. Gandhi.

Nickolas underwent surgery in April. By mid-May, he was doing things he didn’t think he’d ever do again.

“I asked Nickolas what he’d want to do if the surgery worked. He said ‘throw a football,” said Julie.

Three weeks after surgery, Nickolas bought a football. When his dad arrived home from work that evening, his sister told their father that Nickolas had a surprise for him.

“He put his stuff down and I came running out. I threw him the football and he gave me a big hug. We both started crying,” said Nickolas.

He’s now well on his way to being a normal kid again, running, throwing and hanging out with his friends. His mother says she couldn’t be more thankful.

“I know there are hundreds of children out there going through what my son went through,” Julie said. “The only thing I can tell them is don’t give up.”

To make an appointment with Pain Management, call 682-885-PAIN (7246) phone. Click here to learn more about the program. 

Pain Management at Cook Children's

Cook Children's Pain Management program cares for infants, children and adolescents with chronic and acute pain. C​ook Children's is one of a few children's hospitals in the U.S. providing a comprehensive pediatric pain management program.

The program's goal is to improve the quality of life for our patients by giving them the tools to cope with and overcome pain. Some of the therapy options are medications, interventional pain procedures, medical acupuncture, relaxation therapy, guided imagery, biofeedback, hypnosis and cognitive behavioral therapy. The team also teaches patients and families how to manage pain through exercise, diet, lifestyle modifications, and sleep hygiene.

The team includes two board certified anesthesiologists trained in pain management, a licensed clinical social worker specializing in psychophysiology, a physical therapist, a clinic nurse coordinator, and referral to a dedicated clinical therapist. Click here to learn more.

Little Charlotte Friessen, 7 months old, arrived at Cook Children’s only 30 minutes prior and was rushed to the Cardiac Intensive Care Unit. She needed an echocardiogram on her heart so she could get the help she needed. She needed to relax to get the proper readings before treatment could begin. But Charlotte was afraid and unhappy.

The years of training and experience weren’t enough for Tiffany Cox, Jen Jones and Mary Brennan. They needed to find something new to calm Charlotte down to get the ultrasound imaging of her heart.

What to do?

“Charlotte hated the little Doppler on her. The three nurses were doing everything they could to help her,” Anne Friessen, Charlotte’s mom, said. “They were talking to her and nothing worked. Then one of the nurses said, ‘Let’s sing nursery rhymes. The nurses had a blast.’”

The nursery rhymes and lullabies worked to perfection. Charlotte stopped crying. At least until the nurses stopped singing to think of new songs. Each time they stopped, Charlotte began to cry. Soon, everyone hit their stride and even Lane Lanier, M.D., a pediatrician on the Cardiac Specialty Care Unit team, joined in on harmonies.

Cox spent most of her career working with adults in the Intensive Care Unit and Cardiovascular ICU. She says one of the things she loves about Cook Children’s that she couldn’t do in the adult world of nursing “is be silly and play.”

“I have found such a deep joy working with these children and babies. The needs of kids, the things that make them feel better, are usually so simple,” Cox said. “If a little spontaneous singing and making silly faces with my colleagues makes a child in the CVICU smile and feel better, I will do it all day long. I happened to be across the hall that day with my own patient, and heard this poor darling across crying her eyes out during the echo, and I really just wanted to come ‘play’ with my colleagues. They were trying everything to make her feel better.”

But come on - how many nursery rhymes do you know off the top of your head? “We even ‘performed’ a sing-song version of the theme-song rap from The Fresh Prince of Bel Air,” Cox said. The three of us and the patient’s mom are about the same age and grew up watching that show. I mean, who gets to do THAT at work?! I love this place.”

The singing also helped ease Anne’s mind for a little while too. After all, so much had happened in such a short period of time.

“They sang so many nursery rhymes,” Anne said. “I felt like I stepped into an episode of Grey’s Anatomy. They sang for the entire echo. It was really neat.”

A month earlier, Charlotte was taken to see her pediatrician in Andrews, Texas. During her well-child visit, doctors found she had a heart murmur. About three weeks later, a specialist in Lubbock diagnosed Charlotte with a coarctation of the aorta. This means a narrowing of the aorta, requiring the heart to pump harder to allow blood through the narrow part of the aorta.

The family was immediately rushed to Cook Children’s and immediately the care began for Charlotte.

“The nurses met us as soon as we got there,” Anne said. “Everyone was so great. They helped us handle the situation a little more peacefully. Up until then, I had been so wide eyed about everything that happened. We talked to Dr. Lanier and all the nurses, I felt so confident in their work. They were so happy that we chose their hospital. Dr. Lanier thanked us so many times for letting him take care of our daughter. It made me feel good. Even through this horrible situation, it gave me peace.”

The next day, Vincent Tam, M.D., Cook Children's medical director of Cardiothoracic Surgery at Cook Children’s Heart Center, performed the surgery to fix the aorta. Anne said she and her husband, Albert, felt comforted during the surgery. Since the heart murmur was detected, the family's church had been praying for Charlotte and now they were praying for everyone taking care for the little girl.

“So many people, from all over the place, were praying for Charlotte,” Anne said. “But they were not only praying for us, but our doctors and the nurses too. Everything just went so smoothly. We were home in less than a week.”

Other than getting her high blood pressure under control, which was expected after her surgery, Charlotte is back to her normal self. She’s sitting up, playing and holding her own bottle.

And while Charlotte may not remember her time at Cook Children’s, it’s a moment the nurses will never forget.

“It was a special few minutes to be able to serve her and her family in that simple way,” Jones said. “I love that being a nurse sometimes means lots of time management and critical thinking, and sometimes means simply singing nursery rhymes over a scared baby girl.”

In 2011, she shadowed a social worker in the Emergency Department, and after that day she knew Cook Children’s was the place for her.

“When I was at the medical center I felt so many positive vibes and I just can’t wait to be a part of that and to learn as much as I possibly can,” said Rustin.

Rustin, a licensed baccalaureate social worker, will be part of a brand new team called STAR Kids, the new Cook Children’s Health Plan. STAR Kids is a state level medical program that helps children across Texas. Cook Children’s recently built brand new facilities for their team and is in the process of hiring over 100 new employees.

Before working at Cook Children’s, Rustin worked with a mental health organization in Fort Worth. She hopes to go back to school in the next few years to receive her Master’s Degree in social work. And with Cook Children’s generous tuition reimbursement plan, she sees it as a very attainable goal. After getting her Master's, she hopes to return to Cook Children’s and build her career within the medical center.

- Written by John Davidson

She had her first heart surgery at Cook Children’s when she was 11 months old. Her second came at age 15 and left her with vivid memories of the place where she would one day work.

“It was magical. I still remember the atrium, the paint on the ceiling and all of the colors. I also remember the staff. The nurses and doctors were excellent and so friendly.”

Heart surgery isn’t something one would expect to have fond memories of, but Flores says her experience as a Cook Children’s patient helped guide her life in a direction she may never have imagined.

“Growing up, I always wanted to be like my pediatric cardiologist, Dr. Lai. Now, here I am, working alongside him.”

Not only is she working with the physician who cared for her as a child, but also with her current cardiologist, Scott Pilgrim, MD, Medical Director of the Adult Congenital Heart Defect Program at Cook Children’s. Flores may be the only Cook Children’s employee able to say she’s a lifelong patient, still being treated today, but it’s a title she carries well. She knows what the patients are going through, and uses her experience to reassure them and their families.

“Sometimes I tear up because I’m thinking wow, ‘Is this what my mom was like or is this what I was like?’” said Flores. “I know surgery is scary. I’ve been through it, so I’m there, scared with them and praying with them. It can be hard but also very rewarding. “

When it comes to the future, Flores doesn’t seem too concerned about change. She says she wants to continue what she’s already doing, helping patients understand what to expect and helping parents understand what their child is going through. Most of all, she wants everyone to know that having a heart defect doesn’t need to hold a person back.

“I want patients to know that you can do anything you want to do. You can be a nurse, you can be a nurse practitioner, you can be a teacher or you can be the president!”

As for Flores, she’s perfectly happy being a nurse practitioner at Cook Children’s.

“I just want to continue working here forever. I fell in love with this place when I was a kid and am still in love with it now. “

Kenda Hooker was 3 years old when doctors discovered a hole in the top chamber of her heart. Like many congenital heart defect (CHD) patients, she went on with her life assuming her heart had been ‘fixed.’ As memories faded, her medical records were lost and her parents, who knew the most about her condition, passed away. So when she ended up with health problems nearly three decades later, doctors didn’t know where to begin.

“I started feeling dizzy and fatigued. I even passed out a few times,” said Kenda. “Several doctors told me the same thing, ‘You’re a new mom, you’re probably depressed. I even had my husband go with me to tell them that there was something wrong.”

Kenda wasn’t depressed. Instead, she was having issues with arrhythmia and would need a catheter ablation to remove the faulty electrical pathway inside her heart. That was just the first of several unfortunate diagnosis’s Kenda would hear over the coming years.

Next, it was the severe heart defect found in her first daughter, Koralyn.

“Koralyn Marie was born April 9, 2012. We knew prenatally that she had hypoplastic left heart syndrome,” said Kenda. “She spent her whole life at Cook Children’s, we were never able to take her home.”

Koralyn’s cardiologist, Lisa Roten, M.D., said her little heart was severely underdeveloped. As hard as they tried, there was little the doctors and nurses at Cook Children’s could do to save her. She passed away at 4 months old.

With the arrival of Kenda’s second daughter, Karis, in October of 2015 came more unwelcomed news. Another heart defect was diagnosed, again prenatally, but this one was less severe.

“Karis has an atrial septal defect,” said Kenda. “She had another hole in her heart but it has already closed on its own.”

Dr. Roten says there’s no way to know right now if there’s a genetic reason Kenda’s daughters both experienced heart problems. After all, she also has three heart-healthy boys.

“Kenda is part of the first generation of complex CHD patients who are truly thriving,’ said Dr. Roten. “A lot of the surgeries we perform now were not an option before the 1980’s so we’re seeing a new group of patients who have undergone surgery and are able to lead pretty normal lives.”

Dr. Roten says there are so many of these patients that a new subspecialty has even been created. At Cook Children’s, The Adult Congenital Heart Disease program treats patients who have outgrown pediatric care, including women with CHD who are considering becoming pregnant.

For Karis, her future is full of hope. Dr. Roten isn’t sure she will even need surgery. Even if she does, it likely won’t be an open heart operation like the one her mother had. Instead, her heart could be mended in the cardiac catheterization lab at Cook Children’s, with just an overnight stay. But like her mother, she will need to see a cardiologist for lifelong care.

“The fact that people with CHDs are going on to have kids shows just how far we have come,” said Dr. Roten. “At the end of the day, it may not be the life you would have chosen for yourself or your child, but it’s not a bad life. People with CHDs are going on to live good quality lives. The most important thing is to keep going.”

About Cook Children's Heart Center
The cardiology team at Cook Children's has extensive experience in the diagnosis and treatment of pediatric heart care. They know the unique requirements of treating the growing hearts of children, including those with extremely rare and difficult conditions. Our areas of expertise include cardiac surgery,interventional cardiology, adult congenital cardiology, electrophysiology, cardiac testing and imaging,echocardiography, fetal echocardiography and cardiac anesthesiology.

Along with his medical degree, Dr. Pilgrim has completed a combined internal medicine and pediatrics residency, followed by pediatric chief residency at Maimonides Medical Center in Brooklyn, N.Y. His fellowship training in pediatric cardiology was completed at Cohen Children’s Medical Center with the North Shore-Long Island Jewish Health System.

Impressive indeed, but long before the tedious hours of study and hard work, Dr. Pilgrim’s career path began to take shape at a very young age. See, Dr. Pilgrim grew up with a congenital heart disease patient. His younger sister, Stephanie, was born with congenital heart disease, and she has the scar on her chest to prove it! Congenital heart defects represent the most common birth defect in children and occur in approximately 1 in every 100 children born.

Today, Stephanie is 35 years old, married and has kids, looking much like the patients you would see in the waiting room at Cook Children’s Adult Congenital Heart Disease clinic. In fact, conservative estimates predict that there are nearly 1.3 million adults with congenital heart disease in the United States with about 1 in 150 adults being affected. There are now far more adults than children with congenital heart disease in the US.

It makes perfect sense for Dr. Pilgrim to make this his career focus, right? Well, maybe, for everyone but Dr. Pilgrim. At least, it took him a little while to realize treating ACHD patients was his calling. ““There was a great deal of angst in choosing my career path” he said, chuckling. “I really wanted to be able to apply my internal medicine training to a pediatric subspecialty career path that would allow me to assist in the transition of adolescent and young adult patients to the adult medical arena. I was really drawn to the world of intensive care early on in my residency training, but I loved building long term rapport with the patients and their families in the outpatient setting as well.”

Toward the latter half of his medicine-pediatrics residency, Dr. Pilgrim finally latched on to the idea of pursuing a career in adult congenital cardiology. “Congenital heart disease was fascinating to me in medical school. I was drawn to the complexity and singular nature of each defect and the associated repair. As time progressed, I learned of the growing need for ACHD specialists for a large, vulnerable population with a noted care gap. This field has proven to be the perfect fit for me.”

Once he decided this was the right direction for him, Dr. Pilgrim has never looked back. After all, these are the patients he can identify with like no other. He grew up with one.

“My sister grew up with a scar on her chest. As kids, we called it her “zipper”. We, like many patients today, said, ‘It’s fixed! There’s nothing more to be done’. However, in many cases that is simply not true. Surgery is rarely a cure and most congenital heart defect survivors need lifelong specialized care.”

But Dr. Pilgrim and his colleagues know that many adolescent and young adult patients don’t realize the severity of their heart problems, or at the very least, that they need continued care. Most patients were diagnosed in infancy and don’t remember their surgical repair. Many have dropped out of care for a variety of reasons. “Much of my job revolves around providing education to the patient about their heart disease so that they can develop autonomy and learn to advocate for themselves as they grow older.”

Dr. Pilgrim explains that adults with congenital heart disease remain at risk for long term complications including heart failure, abnormal heart rhythms, pulmonary hypertension and premature cardiovascular death. On top of that, adult onset disease such as hypertension, obesity, diabetes and acquired cardiac disease begin to interplay with their unique physiology. Many ACHD patients will require additional surgical intervention or added medications, even if they had a successful repair as a child. This underscores the need for specialized care. However, fewer than 10% of all adult congenital heart disease patients receive the recommended care in a specialized center.

Congenital heart disease has dramatically changed the landscape of another field in cardiovascular medicine, that of pregnancy and heart disease. Rheumatic heart disease has been replaced by congenital heart disease as the most common heart disease in pregnant women in the US.

“A lot of women show up to the clinic, just like my sister, wanting to become pregnant and wanting to know the risks to themselves or the potential risks to the fetus,” Dr. Pilgrim said. “At Cook Children’s ACHD program, we provide women of child bearing potential with important education regarding birth control options, pre-pregnancy counselling and risk assessment. Women with congenital heart disease who are already pregnant are followed in conjunction with the obstetrician, maternal fetal medicine, fetal cardiology and anesthesia teams with a coordinated delivery plan. We can counsel and treat the woman with the heart problem, while also taking any necessary precautions for the baby after birth.”

But Dr. Pilgrim stresses that there is plenty of optimism for the ACHD patient to live a full life despite their heart disease.

“Too often we find that these individuals become defined by what their disease is rather than who they are as a person” Dr. Pilgrim said. “In some ways their defect may limit some of the things they can do, but it shouldn’t limit their happiness or ability to live a fulfilled life, with the proper treatment. I think that’s the most optimistic message that I can give patients in the community. Through education and proper surveillance in a specialized ACHD center, you can live an active and healthy lifestyle.”

Dr. Pilgrim speaks from the example of how well his sister is thriving as an adult with ACHD. Especially, with the right program, like you will find at Cook Children’s, caring for you.

More about Scott Pilgrim, M.D.

• Dr. Pilgrim spends his free time with his wife and three beautiful children.
• He is particularly involved in musical pursuits, having performed with the 6-time Grammy Award Winning Brooklyn Tabernacle Choir for 12 years.
• He is also a sports fanatic, enjoying baseball, football, basketball and anything else involving healthy competition.
• Yes he knows about the movies and graphic novel, Scott Pilgrim vs. The World.

The ACHD program at Cook Children's

At Cook Children's, we care for the needs of patients with congenital heart disease from the moment they're born, and we stay with them all the way into adulthood. Our Adult Congenital Heart Disease (ACHD),  is one of only a few formal programs nationwide to offer inpatient and outpatient care for teen and adult patients with congenital heart disease, because adulthood, like childhood, should be as simple as possible.

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

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

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

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

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

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

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

About #erasekidcancer

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

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

Who were they kidding? There's no emotional prepping anyone could do at that time. So, off to the OR for delivery we went. Talk about scared! They gave my baby a 10 percent chance of survival and they gave me a death sentence if they didn't deliver right then and there.

Graysen was brought into this world three months early weighing 1.4 pounds and not crying, or breathing. I remember seeing that he was the size of the nurse’s hand when she was working on him. I got to take one look at him before they had to intubate him immediately to get him breathing, since he was turning blue.

They then hurried away with him to the delivering hospital’s NICU. He was supposed to be born on March 15th (spring break baby) and he came into this world right before Christmas. With only a diaper the size of a tiny flip cell phone (which was the phone we had 10 years ago!), and under a heat lamp for warmth, inch by inch, ounce by ounce, he grew.

Weeks into life, the doctors decided to start feeding him by NG tube (Nasogastric tube that runs through the nose and into the stomach for feeds).

He did fine tolerating the feeds until he got an infection in the intestines, called necrotizing enterocolitis, also known as Nec. This made his belly swell up and, if not cured properly, could have resulted in a hole in the intestines, which is fatal. Surviving Nec was thought to be low. The doctors called to inform me that he was not doing so well and needed to be transferred by Teddy Bear Transport to the Medical Center’s NICU.

They loaded him up and took him by ambulance after two months in the NICU where he was born to begin his next few months of growing. Cook Children’s slowly nursed him back to better health, and, luckily, Graysen did not need surgery on his intestines. Miraculously, he pulled through another obstacle.

Weeks went by before they attempted to feed him again. In the meantime, the doctors had a central line surgically put into his chest so he could receive his nutrients properly. After a few weeks of feeds, the doctors started to see major improvement. They took him off the respirator and put him on a high flow nasal cannula to help with Graysen’s oxygenation and breathing. He did great with this new machine. Now breathing well, it was time to introduce the bottle at around 3 months. He took it, but not all of it.

The doctors had to decide what to do about the feeds he was leaving behind. They decided to put a G-button surgically into his stomach so that the left over feeds could be received by tube. This was the turning point. The hardest decision I had to make. Once that G-button was placed, I would have a medically dependent child.

After being in the NICU for five months, this was the only way he would be able to come home, and I was ready for that day. I gave the doctors the approval, and off to his first surgery he went. That was the first of 14 surgeries he would have throughout his first 10 years of life. Surgeries followed including fundoplication (an operation to prevent stomach contents from returning to the esophagus), hernia repairs, tonsillectomy, and a tethered spinal cord repair. Just to name a few. His spinal cord was taut at the end and neurosurgery was scheduled at 12 months. He caught meningitis after the surgery and, once again, beat dangerous odds.

Graysen went through so much that he didn’t eat. For six years, he was completely tube fed. He went through many years of intensive feeding therapy. He still didn’t want to eat orally. I put him in kindergarten and he saw his peers eating by mouth. That sparked an interest and, at 6 years old, he started eating. Now he demolishes whole cheeseburgers and fries! Not only has he beat death numerous times, he's gone through 14 surgeries and countless doctor appointments getting him to where he is now. This kid is here for a reason. This month we celebrate Graysen's 10th year of LIVING! Graysen is my Christmas miracle.

I could not have done this alone. I am so thankful that I had, and still have, a great network of people working together at Cook Children’s. Without their dedication to their job and to children, I don’t know if Graysen would have made it. Dr. Nancy Dambro was one of his main doctors from the time Graysen was born. Dr. Michael Deitchman has been his pediatrician through all the rollercoaster ups and downs. I can’t thank him enough for his support, countless visits and patience with us. We also see Dr. Jose Iglesias, Dr. Jill Radack, Dr. Bankole Osuntokun and Dr. Fernando Acosta.

It takes a village in Graysen’s case, and I’m glad our village is Cook Children’s!

From the moment his parents named him, Xander Vento’s purpose in life seemed set. He was going to be a hero. Xander’s name translates to “defender of man” in Greek.

Xander drowned when he was 4 years old trying to rescue a little girl. In his effort to lift her above the water, Xander went down into the pool. His parents say the whole event occurred in less than a couple of minutes. On Aug. 6, 2012, Xander was rushed to Cook Children’s. He died three days later.

The little boy lived up to his name in his final days.

“It’s ironic,” Chris Vento, Xander’s dad, said. “This truly was his destiny. He saved somebody. He did what he was meant to do.”

But Xander wasn’t finished saving people’s lives. His brave legacy would continue as an organ donor.

Chris remembers vividly the neurologist at Cook Children’s telling him there was no brain activity. The Ventos were there with chaplain Terry Boggs, a Pastoral Care chaplain at Cook Children’s. Boggs was there to support the family spiritually and is also designated and trained to talk to parents and to answer any questions or concerns they may have about organ and tissue donation.

“I remember we both just looked at Chaplain Terry,” Chris said. “It was really weird because we hadn’t really talked about it, but we both said we want to donate Xander’s organs. We just knew this was in our hearts and we both felt it was right. We looked at it as a sign that we simultaneously made this decision.”

Since the death of Xander, the Ventos have made a point of speaking about pool safety, most recently at a drowning prevention event in Arlington for Cook Children’s, and the importance of organ donation. All in the memory of their defender of man.

“At that very moment, that little girl would have drowned,” Chris said. “He saved her. He sacrificed his life and was able to help many others through organ and tissue donation. We feel that was his purpose. So our son … we’re so proud of him. We regret the loss so much, but we know that’s what he was meant to do.”