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

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

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

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

Team Experience at its best

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

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

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

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

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

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

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

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

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

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

And really… it already is totally awesome!

You can read Joey’s feature story here.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Her siblings, unfortunately, were not a match.

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

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

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

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

Love,

Dr. Diane

#bethematch #swabbinforsuzy #inthistogether #bonemarrowdonor

The transplant program started at Cook Children’s under the direction of Paul Bowman, M.D., with a goal of keeping patients in need of transplant at the medical center instead of sending them across the country to other transplant sites far away from their home.

Over the last 30 years, thanks to burgeoning technology, participation in clinical trials and being a National Marrow Donor Program center for transplant, collection and donation, Cook Children’s has become the third largest transplant program in Texas.

It has grown from only a handful of matched sibling transplants into approximately 40 transplants annually.

“Where a transplant 20 years ago would have been a treatment of last resort, this is absolutely not the case today. It is now a very intense treatment we are offering patients early on in their therapy with the hope that we can save more children and they can live long and productive lives,” said Gretchen Eames, M.D., M.P.H, medical director of Cook Children’s Hematology and Oncology Center.

The marrow inside our bones is responsible for making the blood cells our bodies need. When this process is interrupted or fails, it can cause a wide variety of health problems, some of which can be life threatening.

The hematology and oncology team ask families to think of bone marrow as a big factory that makes billions of stem cells for your body to use:

• Bone marrow is the spongy stuff inside all of our bones.
• The stem cells are stored in the bone marrow until they are needed.
• When they grow up, the stem cells leave the bone marrow and move into the blood where they can do their jobs.

If a child’s bone marrow factory is not working right because of cancer, a blood disorder or other kind of damage, a stem cell transplant will replace the “old” factory and give him or her a brand new factory that works the right way.

Doctors decide who will be the source of stem cells for the child’s transplant. The decision is based on the child’s diagnosis and special blood testing called tissue typing. In general there are two types of stem cell transplant:

Autologous:

• The child will receive his or own stem cells and the transplant is needed to support the patient during very intensive chemotherapy.
• This type of transplant is often used for children with neuroblastoma; this type of transplant might also be used for Hodgkin lymphoma or certain types of brain tumors.

Allogenic:

• The child will receive stem cells from someone else who has a similar tissue type. This donor might be a brother or sister or maybe someone the child has never met through a donor program.
• This type of transplant is often used for children with leukemia, lymphoma, severe aplastic anemia or other blood disorders, certain metabolic disorders or certain types of inherited problems of the immune system.

Through the program’s affiliation with the National Marrow Donor Program (NMDP), Cook Children’s has access to donor registries from all over the world. These registries can find donors for bone marrow, peripheral blood stem cell and umbilical cord blood transplants.

The Cook Children’s Bone Marrow and Stem Cell Transplant program is actively involved in clinical research as well. The program is a member of the Center for International Blood and Marrow Transplant Registry (CIBMTR), the Pediatric Bone Marrow Transplant Consortium (PBMTC), Clinical Trials Network (CTN) and the Children’s Oncology Group (COG), as well as early investigational consortiums, including New Approaches for Neuroblastoma Therapy (NANT) and Therapeutic Advances for Child Leukemia (TACL).

“Seventy percent of patients in need of a bone marrow transplant don’t have a match in their family,” Dr. Eames said. “If they don’t have a match within their family, the only recourse is to look through national and international donor registries to find a match. In 1993, when we did our first unrelated donor transplant, that was a big step for our program and allowed us to treat more kids right here at home. Nowadays, nearly 50 percent of our transplants are from unrelated donors.”

At Cook Children’s, the primary patient diagnosis is Acute Lymphoblastic Leukemia (ALL) with 60 percent of the patients having a malignancy of some type and 40 percent being nonmalignant disorders, such as bone marrow failure syndrome, immune deficiencies, red blood disorders and metabolic disorders.

For more information:

Certain diseases and treatments can deplete a child's healthy stem cells. Sometimes the body needs help to replenish those cells. When this happens, your child may require a very complex process called a stem cell or bone marrow transplant. Click to learn more about the program.

Since 1986, Cook Children's Bone Marrow and Stem Cell Transplant program has performed nearly 1,000 transplants in children with cancer, blood disorders or inherited conditions. That's what makes this program one of the more diverse and experienced pediatric transplant programs in the Southwest.

Cook Children's is a member of:

• The Center for International Blood and Marrow Transplant Research (CIBMTR)
• Pediatric Blood and Marrow Transplant Consortium (PBMTC)
• The Children's Oncology Group (COG) stem cell transplant section.
• We are accredited through the Foundation for Accreditation of Cellular Therapy (FACT).

Over the last three years, 30 to 40 transplants were performed every year for a variety of diseases, with leukemia being the most common primary diagnosis.

#Erasekidcancer

September is Childhood Cancer Awareness Month. This month, we're pulling back the curtain to share what Cook Children's is doing to fight pediatric cancer. Stories will be shared to reflect the hearts of our caring professionals and volunteers, the brains of our clinicians and researchers and the courage of our patients and families.

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

When it comes to battling cancer: she rocks!

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

Luke's story

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

Our efforts to #erasekidcancer

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

More about Hematology and Oncology

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