Nephrology and Hypertension

Patient Stories | Paisley and Veno Occlusive Disease

Access to a Special Dialysis Filter Saves Paisley's Life After Bone Marrow Transplant Complication

The Palmer family spent the worst week of their lives at Cincinnati Children’s—and now they couldn’t be happier. In January 2022, Paisley Palmer was 18 months old. She was recovering from a bone marrow transplant to treat acute myeloid leukemia (AML) when a complication from chemotherapy left her struggling to breathe.

Paisley developed veno occlusive disease (VOD). The condition blocks blood vessels in the liver, causing swelling and fluid retention. This put pressure on the lungs, making it tough to breathe.

“We almost lost her twice in one day,” says mom Jessica Palmer. “But the intensive care unit team worked miracles, and the nephrology team knew how to gently pull the fluid off her body and move her toward recovery.”

Lifesaving Specialized Technology

Jessica says the experience was one of many signs from the universe that she and husband Tim made the right choice in coming to Cincinnati from Cleveland for Paisley’s care.

The Cincinnati Children’s Nephrology team treated Paisley’s VOD with dialysis and a special filter designed for small children. The HF20 filter provides continuous renal replacement therapy (CRRT) for children who weigh between 8 and 20 kg. It is made for patients with low blood volume from a critical illness.

The HF20 filter works with a small child’s existing blood volume. Before this technology was available, dialysis filters not made for this patient size were required, says Stuart Goldstein, MD, director of the Center for Acute Care Nephrology.

The Food and Drug Administration (FDA) issued an emergency use authorization to manufacturer Baxter International Inc. during the COVID-19 pandemic to make the HF20 filter available to children getting intensive care for kidney injury or failure.

Cincinnati Children’s became the first center to use the filter in the United States as part of a study in 2016, Goldstein says.

The Palmers’ Journey to Cincinnati Children’s

Paisley was diagnosed with AML on July 21, 2021. Jessica had noticed a small bruise on her right temple. When it didn’t go away, she asked her pediatrician about it. They saw a dermatologist, who thought it was a hematoma. An ultrasound and biopsy confirmed AML.

“Paisley never appeared sick. We caught it before it took over her bone marrow,” Jessica says. 

Paisley was healthy and strong when she started inpatient chemotherapy in Cleveland in August 2021. Between August and December 2021, she spent 90 days in the hospital. 
Doctors determined Paisley needed a bone marrow transplant after discovering a mutation in her type of AML that put her at a high risk for the cancer to return if her only treatment was chemotherapy. 

The Palmers consulted with other hospitals and doctors. Jessica, who is an engineer and data-driven, dove into the research to find the best place for Paisley to get a bone marrow transplant. Their doctors in Cleveland started a search for a bone marrow donor, along with Be the Match.

As Jessica scoured outcomes data, she began to “understand the importance of finding a hospital with a depth of experience in bone marrow transplant,” she says. “You don't know what other issues might arise along the way.”

Through Be The Match, she learned that Cincinnati Children's performed 226 transplants in 2019 and 2020 specific to pediatrics.

Jessica joined numerous social media groups and talked to many other parents of children with cancer. She found CureWheel, which helps families find doctors for their child’s exact diagnosis. A conversation with the father who started CureWheel truly opened her eyes.

“He told me you can love your doctor, but when things go wrong what does that doctor do? Where do they go for help? What does that look like?” Jessica says. “I realized I needed to look beyond evaluating just her oncology and transplant team.”

Cincinnati Children’s singular focus on pediatrics won over the Palmers. Jessica says she was comforted by knowing there are 18 Cincinnati Children’s doctors who are specialists in bone marrow transplants and that the new Critical Care Building on campus includes 48 beds designated for bone marrow transplant patients.

“I needed to be able to walk into Cincinnati Children’s and hand over everything to them and trust that we were putting Paisley into the best situation,” Jessica says. “All the research I read and the experts we talked to—we knew that her doctors would have all those experts right there to turn to if there were complications.”

24/7 Access to Experts

When the Palmers made the switch to Cincinnati Children’s, the bone marrow transplant team suggested that donated cord blood could be a better match for Paisley’s bone marrow transplant because of her small size and young age. 

The Palmers traveled to Cincinnati in December 2021. The first two weeks after Paisley’s bone marrow transplant were rough, but Paisley made it through. Doctors were discussing her discharge to the Ronald McDonald House next door. The next day she was in the pediatric intensive care unit (ICU) with VOD.

“It happened on a Friday night into Saturday morning, and there was no B team there. Everyone knew what to do; they had seen it before,” Jessica says. “It was scary, and all I could think was, ‘Thank God we came here.’” 

Paisley was highly sedated, on a ventilator and had a chest tube to help drain fluid. Doctors from many specialties—including ICU, pain management, transplant and nephrology— were part of the care team. The HF20 filter works by taking blood through a large catheter in the neck, passing it through the filter and then returning the clean blood back to the same vessel. This required another surgery for Paisley, but the dialysis treatment saved her life. 

Jessica says the nephrology team was particularly patient and talked to her and Tim about Paisley, asking questions about what she liked—her personality. They asked for a picture of her. They cared for her as an individual, Jessica says.

“That is the biggest gift they could ever give a parent,” Jessica says. “I could hand over my worries to this team of specialists knowing they have this, and I could just be a mom to my girl. It was very powerful to me.”

Ongoing Care for a Bright Future

The Palmers returned home to Cleveland on April 1. Paisley celebrated her second birthday in June and is now six months post-transplant. She’s an active, happy toddler who loves to swim, Jessica says. 

Cincinnati Children’s staff still monitors her care. The family goes to Akron Children’s Hospital for follow-up care because they know the value of a pediatric-only center. The doctor who leads the transplant division in Akron was a fellow at Cincinnati Children’s. 

“Both hospital teams continue to work together for our daughter,” Jessica says. “Cincinnati Children’s is fully connected with our care here at home, and that’s just another benefit.”