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.”

Pamela Sherman, M.D., is a highly specialized and skilled orthopedic hand surgeon at Cook Children’s who has more than 3,000 hand patient visits per year. In order for her patients to be successful after her surgeries she relies on highly specialized rehab therapists called hand therapists. A hand therapist can be a licensed physical or occupational therapist. To become a hand therapist requires many hours of training beyond the basic education of a physical or occupational therapist. The hand therapists at Cook Children’s work closely with Dr. Sherman in her outpatient clinics to provide collaborative and comprehensive care to the patients and families.

Hand therapy is the art and science of evaluating and treating injuries and conditions of the upper extremity (shoulder, arm, elbow, forearm, wrist, and hand). The Cook Children’s SPORTS program is staffed with hand therapists at three locations across Tarrant County whose expertise is treating children with an injury or condition that affects the arm or hand.  The hand therapists work with the kids  from birth to 21 years to assess their needs and develop a treatment plan that allows them to return to their normal activities. 

Injuries of the hand are quite common, but steps can be taken to prevent some of them from happening.  Here are a few tips to help prevent hand and arm injuries:

1. Wear protective gear, such as elbow pads and wrist guards, during sports activities.
2. Make sure children do not play near treadmills or other exercise equipment.  Be sure to turn off the equipment and/or unplug them from the power source.  
3. Supervise children when using knives or sharp scissors. 
4. When using a game controller, put pillows in your lap to rest your arms on. 
5. Take regular breaks when performing a repetitive task.  This can help prevent overuse injuries.
6. Change positions often if you are going to be holding an object for an extended amount of time.
7. Review your body mechanics and posture when performing a task.

About the author

Cara Smith, PT, CHT, is a certified hand therapist and the Hand Therapy Program coordinator for the SPORTS program at Cook Children's. Cook Children's offers hand rehabilitation services for all ages, diagnoses and stages of care. We help rehabilitate children/adolescents with a wide variety of congenital conditions and traumatic injuries.

For more information, call 817-347-2925. Cook Children's hand rehabilitation services are under the direction of our Sports Performance Orthopedic Rehabilitation Team Specialists (SPORTS). 

Cook Children's offers three SPORTS Rehab locations for hand therapy:

750 Mid Cities Blvd., Suite 130, Hurst, TX 76054

1919 8th Ave., Fort Worth, TX 76110

801 Matlock Rd., Mansfield, TX 76063

Eleven years ago on March 17, 2003, we were blessed with a beautiful baby boy names Ja'Kiyran McArthur, also known as J.T.

Two weeks after he arrived we received a letter from the hospital where Ja’Kiyran was born, stating he had a chronic blood disorder called sickle cell disease. We were panicked, scared and very young. At our first scheduled visit with Cook Children's Hematology department we were informed that in order for a child to have this disease both parents have to carry either the sickle cell trait or an abnormal form of hemoglobin.

Over the years we have endured countless medical center stays due to sickle cell crisis*, pain episodes, blood transfusions and antibiotic therapy. Often times, we felt hopeless and  therefore received counseling when he was 6 months old.

We have learned to take it one day at a time, remain encouraged and enjoy each good day he has. Our faith teaches us that love, positivity and believing in the miraculous conquers all.

Even though we are exhausted and financially strained when he becomes ill, we wouldn't trade our struggles or this amazingly smart young man for anything in the world. We are extremely grateful to Cook Children's for providing excellent care and showing us and our son love and constant attention. The nurses are amazing and make each stay feel like being at home. The physicians are consistent and persistent when it comes to getting him well.

Everyone works together to create a loving family and superb care. We thank God for our hospital family and their tireless efforts. We want to remind everyone to get informed about this disease and help us to raise awareness and find a cure for all who have to live with it every day.

Mrs. Ashley McArthur

For more information:

• Cook Children's Sickle Cell Center
• What is sickle cell disease?
• Who gets sickle cell?
• Sickle cell disease
• My friend has sickle cell disease. How can I help?

After my son came home, I entered the world of therapies, and I became a huge advocate for Early Childhood Intervention (ECI). Having attended over 400 therapy sessions with my son by the time he was 3 years old, I learned a lot about how to work therapeutically with young children, and I picked up a few useful strategies along the way. I also realized that kids (and parents!) can become "burned out" on therapy. Based upon my experience, I encourage parents to focus their energy on whatever activity is most beneficial for their child at that moment and keep the ultimate goal of achieving the child's functional potential in mind when deciding how to best allocate their time.

Although I focus on evaluating children in my professional life, I developed a new perspective on the usefulness and potential impact of evaluations on a parent. For instance, would an evaluation change the current treatment plan or simply confirm that a child has deficits? I also became personally aware of something I have heard from several parents: It is difficult to constantly be reminded of all the things your child cannot do and how it is nice to occasionally hear about their strengths. A large component of the ECI model is teaching parents how to incorporate therapeutic activities into everyday activities. While I believe this approach has immense benefit, it can also have some drawbacks, which I eventually saw in myself and I look for in those extremely attentive and motivated parents. I realized that I was often so focused on making sure everything I did with my son had a therapeutic purpose, I sometimes missed out on the fun of having a baby. Just as children need to have time for fun with no other purpose than having fun, even if your child has special needs, parents need to allow themselves to enjoy their child as simply their child. Children like my son will have numerous therapists and other healthcare providers throughout their lives, but I am the only mother he has, and all of the other roles are secondary.

Having a child who I knew from the beginning may not develop typically was also strangely freeing. Because my job is to track a child's development, I know that I would have fallen into the competitive trap of comparing when my son met each milestone, which was made worse by the fact that many of my friends having children at that time were also neuropsychologists. Because I began to expect delays, my son became free to develop at his own pace. While it is important to know if a child is falling behind so that interventions can be started early, a child's development should not be the contest it has become, and we should allow children some freedom to develop in their own unique way. 

My background in mental health also made it easier for me to acknowledge and process my own feelings of grief.  Although my son survived, it was essential to acknowledge the loss of the "perfect" child that everyone imagines while they are pregnant. That disappointment is a loss and important to honor because any intense emotions that are "buried" do not truly disappear forever. I also sometimes talk with the parents of my patients about their own symptoms of Post-Traumatic Stress Disorder, because experiencing your child's serious medical condition can definitely result in feelings that a parent needs to process. Because of my work, I also do not feel the isolation that many of my families experience. In my world, pediatric strokes are almost normal, and a child whose only healthcare provider is their pediatrician is "weird." I also continue to learn so much from my patients that I am able to use myself and pass along to other families.

Related Links:

• Cook Children's Stroke and Thrombosis Program
• A stroke at birth - part 1
• Stroke at birth - part 2
• Stroke at birth - part 3
• Stroke at birth - part 4