For every procedure Hallie Barnard has undergone at MD Anderson, she receives a bead. The yellow ones symbolize each night in the hospital. The ones that glow in the dark represent radiology appointments.

Theyre for every poke, every wound cleaning, every physical therapy appointment, the 13-year-old said.

MD Anderson launched its Beads of Courage program in 2008 so young patients could document their journeys through cancer treatment. Collecting colorful strings of beads also provides some incentive to show up at dreaded doctor appointments.

Hallie has more than 350 feet of beads.

They symbolize everything that Ive gone through in the past four years, the Denton resident said.

Still, Hallie is less concerned about her own struggles through osteosarcoma, a cancer that begins in the bones, than she is with shining a light on the challenges other children face.

Every time I show people my beads, it dawns on them that children are going through so much, she said. And there are children with longer beads than I have.

According to the American Childhood Cancer Organization, about 15,780 children are diagnosed with cancer in the U.S. each year.

Their studies indicate 1 in 285 children will be diagnosed with cancer before their 20th birthday and that cancer is the leading cause of death for children between the ages of 4 and 14 in the country.

Children are dying of cancer at astonishing rates, Hallie said.

Regardless, she said, childhood cancer research is underfunded. Less than 4 percent of the federal budget for cancer research is dedicated to its study, according to the Childrens Cancer Research Fund, a national nonprofit.

I dont want any of my friends to die anymore, Hallie said. I want to show them that I am there for them. I am their voice. I can speak for those who cannot speak for themselves.

Hallies Heroes, the nonprofit she started with her parents, Elyse and Jesse Barnard, helps fund childrens cancer research.

But thats not how it began. The organization was founded to inspire individuals to register as bone marrow donors. Because, at the time, Hallie was facing another seemingly insurmountable challenge finding a match for herself.

Hallie was diagnosed with Diamond-Blackfan anemia when she was 13 months old.

Your bone marrow is basically what makes your red blood cells, she said. And with DBA, that fails to happen, Hallie said.

Elyse said her daughter did not seem to be growing normally or hitting milestones at the right time during her first year of life.

Our pediatrician would tell me everything was OK, she said. As a first-time mom, we tend to worry about everything, but I knew that something was wrong.

That fear was validated when Hallie went for her 12-month checkup. A blood test revealed low levels of hemoglobin, and she was admitted to the hospital.

Diagnostics pointed to Diamond-Blackfan anemia but doctors were still skeptical due to the rarity of the disease, Elyse said.

In the end, Hallie had a diagnosis. But treatment options were even more elusive.

Only five to seven babies per million have Diamond-Blackfan anemia, according to St. Judes Research Hospital.

Blood transfusions and steroids can be used to manage symptoms, but both take a toll on the body, Elyse said.

Stem cell transplants offer the only possible cure. The issue is finding a donor.

Theres just a 1 percent chance of finding a match for bone marrow transplants, Hallie said.

Her family began looking and moved from Virginia to Texas, after learning that Dallas had one of the four hospitals in the U.S. specializing in the disorder.

Out of the Barnards search for donors, Hallies Heroes was born.

In the search for her own bone marrow donor, other matches were made. So far, there have been 184 and the organization has inspired more than 8,000 people to join the bone marrow registry.

To its mission, Hallies Heroes added funding for Diamond-Blackfan anemia research and covering medical bills.

Hallie found her own match for a bone marrow transplant when she was 9. The procedure was scheduled the following year, 2018.

She was in the hospital for 60 days, kept in isolation for the duration to protect her fragile immune system, which was wiped out by chemo.

After 100 days, the bone marrow transplant is usually considered fully integrated, Elyse said.

You basically do a happy dance, because you have a new immune system, she said. We thought we were in the clear.

But at 120 days, Hallie had a new symptom.

I started getting horrible pains in my leg, she said. We found a small bump, the size of a mosquito bite.

The growth was right above her left knee. Doctors told her to draw a circle around it to see if it grew.

In a week, it had doubled, Hallie said.

Diagnostics revealed the bump was indeed a tumor.

In March 2019, Hallie was diagnosed with osteosarcoma, a bone cancer that develops most often in children and young adults.

Hallie was presented with a few different choices. She could opt for an amputation or limb salvage surgery to remove diseased bone and replace it with a metal implant or a bone graft, called at allograft, from another person.

We wanted to get a second opinion, Hallie said. Our doctor said, I studied under this amazing woman, Dr. Lewis. Yall should go to MD Anderson.

Dr. Valerae O. Lewis serves as the inaugural chair of orthopedic oncology at the hospital. In fact, she created the Department of Orthopedic Oncology in 2014.

The Barnards made an appointment to see her in mid-April 2019.

Data from MD Anderson shows that between 800 and 900 cases of osteosarcoma are diagnosed annually in the U.S. About half of these are children and teens.

Lewis presented Hallie with three options. You can do an amputation, she began.

Historically, that was the only choice available to remove the tumor completely. But now there are additional options limb-salvaging surgery and rotationplasty, Lewis said.

Limb-salvaging surgery can be performed if the cancer has not metastasized.

Limb-salvage is a great option, because it gives kids the ability to keep their legs, Lewis said. But it does take a toll.

Patients activity levels are restricted and additional operations are needed down the road, probably every 15 to 20 years.

The third option, a rotationplasty, removes the tumor along with the middle part of the leg and the knee. The surgeon then rotates the lower leg 180 degrees before reattaching it to the thigh.

Its like an amputation, but we create a new knee, Lewis said.

Rotationplasty allows patients to be higher functioning. Its easier to walk, Lewis said. You can bike, skate and swim. Everything you need a knee for, you can do.

Hallie chose rotationplasty. Surgery was scheduled for late June 2019, and she had chemo before and after surgery.

She was 11 at the time and had complications while healing, including infections. She needed a wound vacuum for about 11 months. When Hallie finished chemo in 2020 in Fort Worth, her bones had not yet fused.

Then, Dr. Lewis came up with a genius idea, Hallie said.

Lewis inserted a titanium rod into the nonhealing site to help.

Hallie said that Lewis restored her confidence.

Theres a point when a patient gives up. And theres also a point when a doctor gives up. She said that she had not given up on my leg yet, Hallie recalled.

After rotationplasty, a prosthesis is worn, and patients have to relearn how to walk.

Even though the ankle now functions as the knee, it is entirely different from the typical configuration, Lewis said.

The foot fits into the prosthesis, she said. And one needs to remember that it is a functional foot interfacing with the prosthesis.

The toes can provide balance and aid in powering the prosthesis, Lewis added. The plantar surface also allows for bearing weight.

Hallie was at MD Anderson for about seven months, working on both physical and occupational therapy, until she headed back to Denton April 8.

Hallie has progressed nicely and is walking distances without support, Lewis said.

With further physical therapy and continued dedication she anticipates Hallie will be running, skipping and jumping in the future.

Hallies follow-up appointments at MD Anderson are scheduled every three months.

When Hallie was first diagnosed with osteosarcoma, she remembers telling her mother, God put me back in the hospital to help other children.

Now she advocates for both children with cancer and those with Diamond-Blackfan anemia.

At one point, while Hallie was healing from surgery, Elyse and Jesse went to a wall where donors names are displayed on the ninth floor of MD Anderson.

Every day, her dad and I passed the wall, Elsye said. One day, she wanted to see Hallie added to the names.

After changing the bylaws of the nonprofit, Hallies Heroes pledged $50,000 over five years in support of Lewis research in the area of pediatric sarcoma.

Hallie went on the wall in November.

It was really cool to come full circle with that, Elyse said. We were once there as parents, not knowing if our child would survive and seeing all the people donate money so that she could.

Now were giving back, because we want other children to survive, she added.

The funding will make a significant impact, Lewis said, and will go toward researching treatments for pediatric sarcoma.

Hallie is a success story, Lewis said. She is our ambassador and is a cheerleader to other patients. She wants to give back and help other kids like her.

Peyton is a Houston-based freelance writer.

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Surgery gives teen opportunity to help other kids with cancer - Houston Chronicle

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