Your Impact

A Safer Space

Only an hour after our performance, I was in Arkansas Children’s again. I was back to my old state, where my hospital bed became a safer space than the twin bed I had at home, and my hand was barely visible through the medical table enclosing the IV needle.

I don’t remember how long I was there for exactly, but through the visits of my kindergarten teacher and the hospital staff, along with one specific specialist, my stay in the hospital never made me feel like a “sick” child. At Arkansas Children’s, I was never treated as just another patient, but as a child that they truly wanted to make a difference for. Arkansas Children’s Hospital not only improved my quality of life at that moment but also made me understand that this illness is not all I will ever be; I am still human, and for those days, I was still there, alive and breathing and able to speak, which is more of a blessing than I could ever realize.

Relationships & Connections

Since then, I have lived a considerable amount of life and gone through years upon years of treatment at Arkansas Children’s Hospital. Somehow, this is what has made me the most appreciative of my diagnosis. The relationships and connections that I’ve made simply from going through treatment are ones that I hold closest to my heart.

The nurses that I see through my treatment, the specialists that work with and around me, and just the exceptional staff have made my experience at Arkansas Children’s one that I always make sure to tell others about.

I never thought that something as minuscule and as frightening as receiving medicine through a thin needle for hours would turn out to be such an impactful part of my life.

As I grew, I started to see these treatments as a little safe haven from my “normal” life. The treatments were a break, and Arkansas Children’s is a place where the deeper parts of me were understood without saying a word.

The smell of sterilized equipment and the pasty feeling of a blue tourniquet, attended by the voices of my doctors and the warmer hands of my nurses, are nothing but familiar to me. Thinking back on it now, I don’t believe that I can even remember a life without those things.

Arkansas Children’s Hospital made my experience of being “ill” into something that now feels like just another part of my life, another large fragment of who I am. I don’t look at it as a constraint or something that is holding me back, but as something that’s made me more empathetic and left me with a feeling of appreciation for my Crohn’s.

Nothing But Thankful

I don’t think that I would have been the same extroverted, creative, loving girl that I am at this very moment without living the largest parts of my life through Arkansas Children’s Hospital.

I am nothing but thankful for the experiences they have given me, whether it be the nurses working 12-hour shifts, the specialists seeing me for an appointment, or just the staff who’ve seen the same little girl walk into the same entrances for the last 11 years.

While Crohn’s has made me feel like a dread sometimes, as I’ve grown up, I’ve realized that it is the unspoken component of my life that will always stay the same. It will always make me the girl I am today, and that is nothing short of beautiful.

“Levi’s never met a stranger. Everyone who meets him falls in love with him,” says his mother, Linh Ta.

Levi is a thriving, happy little boy today because of his siblings and because of Arkansas Children’s Northwest (ACNW), where Levi receives the monthly lifesaving treatments he needs to survive.

An Early Diagnosis

Levi has alpha thalassemia major, a hereditary blood disorder that, without intervention, is nearly always fatal before the baby is even born. The condition can cause severe anemia, enlarged organs and heart defects.

At just 3 months old, Levi received his first blood transfusion at ACNW in Springdale, just a few miles down the road from the family’s home in Lowell. He’s had more than 50 since, requiring one every four weeks to survive. Without these lifesaving treatments, Levi’s red blood cells would fail to carry essential oxygen to his tissues.

For now, monthly hospital visits are Levi’s normal, and Arkansas Children’s is his “second home.” He especially looks forward to seeing all the nurses, who have become friends.

But it was a great loss that gave Levi a chance at life. Eight years ago, Linh and her husband, Steven Bounphaseuth, had their first child, a baby boy they named Liam. His condition wasn’t clearly understood by their medical providers at the time, and he passed away from complications. “I try not to think about it too much,” says Linh. “I wouldn’t be where I am now or have this purpose if all that didn’t happen.”

When Linh became pregnant again, she and her husband insisted on an amniocentesis — a test that helps detect birth defects and genetic anomalies. Twenty-four weeks into the pregnancy, Linh’s unborn baby, little Levi, was diagnosed with alpha thalassemia major.

Though Levi didn’t know it yet, his brother Liam’s life made his own possible.

Right Place, Right Time

Though Steven and Linh had some answers, Levi’s survival wasn’t guaranteed. Within a few days of learning Levi’s diagnosis, Linh was on a plane to join a clinical trial at a San Francisco children’s hospital, where she would travel back and forth until Levi was born.

“Somehow everything was just the right place, right time,” says Linh, noting she almost missed the window for inclusion in the trial. The study aimed to demonstrate that a mother could serve as a stem cell donor for her child diagnosed with alpha-thalassemia major. During this time, Levi received in utero blood transfusions, and Linh underwent bone marrow harvesting to collect stem cells.

After his birth in California, Levi remained in the hospital’s neonatal intensive care unit for a month before returning home to Arkansas, where he would begin regular blood transfusions at ACNW.

When Levi was about a year old, Linh learned she was pregnant again. Nine months later, she gave birth to a healthy baby girl, Skyler.

Before Skyler was born, an amniocentesis revealed two crucial details. First, she was a carrier of the blood disorder, but thankfully didn’t have the condition. Second — Skyler’s bone marrow was a perfect match for Levi.

“I ended up giving birth to Levi’s cure,” Linh says.

Consistency and Other Gifts

Levi will eventually receive a stem cell transplant from his sister. Until then, he’ll continue to need his monthly transfusions at ACNW. Steven and Linh are grateful that their son can receive care without traveling long distances.

ACNW also provides continuity, which is invaluable to the family. Levi had the same nurse for three years who, without being asked, reworked her schedule to continue caring for Levi. “She definitely was his favorite — he always looked forward to seeing her,” says Linh. Levi’s other favorites include his doctor and many nurses from the infusion center and the outpatient lab. He also loves the gift shop, where everyone knows him by name.

“I know what to expect,” says Linh. “There’s a routine, and kids thrive off routine. For me, that’s the biggest thing. I have that comfort.”

As a grateful parent and a volunteer board member of the ACNW Auxiliary, Linh knows firsthand how donations to the hospital impact children and families in the Northwest Arkansas region.

“Not only is Arkansas Children’s Northwest taking care of the kids in this community, but there are also people coming from Oklahoma and the surrounding areas that don’t have a children’s hospital … they need care as well,” says Linh. “It’s great if you can donate because you can see where your money is going. You can see the need for growth.”

Levi receives lifesaving treatment at ACNW because of you. Thank you for giving Levi — and children like him — the gift of expert pediatric care close to home.

Thank you for providing joy, courage and expert pediatric care for children like Levi!

The Unthinkable Happens

At first, the ED doctor thought there might be a problem with Bryana’s intestines. He decided to do an ultrasound to be sure. The test results showed the unthinkable … A large tumor growing in the little girl’s stomach.

“I didn’t know what to think,” says Ashley. “It was a nightmare. I thought, This just can’t be real. It felt real and unreal at the same time.”

Bryana was diagnosed with neuroblastoma, a rare cancer that usually affects children under the age of 5. It can spread to the lymph nodes, liver, bones, bone marrow and other organs.

Without treatment, Bryana’s future would be uncertain.

Not Out of the Woods

Two years of needle sticks, port accesses, chemotherapy treatments, scans and surgeries — including an operation to remove the tumor — followed. This sassy, feisty little girl has gone through more in the last two years than many have in their entire lives.

And she’s not out of the woods yet.

Turns out, the tumor damaged Bryana’s sciatic nerve, and she suffers from drop foot, where she’s not able to lift the front part of her right foot. She’s undergoing physical therapy at ACH a couple of times a week and will likely have to wear a brace for the rest of her life.

There is also a chance the cancer will return.
 

ECMO to Keep Landon Alive

ECMO (extracorporeal membrane oxygenation) is a heart/lung bypass machine that oxygenates blood while organs heal. Arkansas Children’s Angel One is the only pediatric transport team in the region with mobile ECMO. “We’re nationally known for our ECMO team,” says Dr. Katherine Irby. Without ECMO, Landon would not have survived transport.

Six Weeks of Lifesaving Care

Landon arrived at ACH on December 16 and was admitted to the PICU. His body had gone into shock. His heart, lungs and kidneys were failing. For six weeks, a multidisciplinary team worked to save him.

Care for the Whole Family

Arkansas Children’s supported not just Landon but his family. Child Life specialists helped celebrate his birthday and Christmas. Social workers arranged lodging. Nurses comforted him through delirium.

Today

Now 5, Landon is “firing on all cylinders,” says his mother. He still requires daily treatments but is thriving. “From the time we got to Arkansas Children’s Hospital, it was like a well-oiled machine,” she says.

A Devastating Injury

Doctors had never seen an injury like it. “It was like a bomb had gone off,” says Dr. Andre Wineland. Cayson required a tracheostomy and was placed in a medically induced coma. There was no guarantee he would ever speak or eat normally again.

Recovery

Cayson spent 47 days at ACH and underwent 11 surgeries. His recovery was long and difficult. Small milestones — eating mashed potatoes, speaking again — became major victories.

Getting Back On

Through it all, Cayson had one question: “When can I get on another bull?” In September, he did. He lasted eight seconds. Soon after, he was competing — and winning.