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Hematology and Oncology

Hematology and Oncology, Inside Pediatrics, Neurology & Neurosurgery

Children’s of Alabama Launches Second Groundbreaking Trial of Viral Treatment for Brain Tumors

Children’s of Alabama and the University of Alabama at Birmingham are leading studies using a genetically re-engineered herpes virus to treat pediatric high-grade gliomas.

“A uniformly dismal prognosis.” That’s how Children’s of Alabama neurosurgeon James M. Johnston, Jr., M.D., describes what children with recurrent malignant brain tumors face, with an average lifespan of six months given a lack of effective treatments.

Now Johnston, in collaboration with Greg Friedman, M.D., associate professor of pediatric oncology and director of Developmental Therapeutics at Children’s, is leading groundbreaking studies designed to shift that trajectory. The team recently completed a Phase 1 immunotherapy clinical trial of genetically re-engineered herpes virus G207 to treat pediatric high-grade gliomas. Their work builds on adult research on the viral treatment pioneered by James Markert, M.D., MPH, who chairs the Department of Neurosurgery at the University of Alabama at Birmingham (UAB), as well as Friedman’s laboratory work, which showed the virus was more effective against pediatric brain tumors than adult tumors.

In the past three years, 11 patients with high-grade gliomas have traveled to Children’s from throughout the country, Mexico and Canada to participate in the study. They receive special screening to pinpoint the tumor location, which is then biopsied. Johnston then places three to four catheters in the tumor. The next day, Friedman and his team infuse the genetically-modified virus into the brain through the catheters.

“We think the virus works by directly killing the tumor cells,” Johnston said, as well as activating the immune system to destroy any remaining cells. “Brain tumors have a way to hide from the immune system by making themselves immunologically ‘cold,’” he explained. The herpes virus turns a “cold” tumor into a “hot” tumor and generates the immune response. Indeed, months after the surgery tests show that immune cells have infiltrated the tumor and continue killing tumor cells.

The initial phase 1 trial in patients with high-grade gliomas was designed to demonstrate safety and wasn’t powered to show efficacy. Nonetheless, Johnston said, “our median survival was significantly longer than the historical six months,” with several children now long-term responders.

In late December 2019, the team received a three-year, $750,000 R01 grant from the U.S. Food and Drug Administration for a Phase 1 trial in malignant cerebellar brain tumors, which may be even more sensitive to the virotherapy than the gliomas. At the same time, they are submitting grants for a Phase 2 multicenter trial of the virus therapy for recurrent malignant supratentorial tumors.

Johnston stresses that the research is a team effort, involving basic scientists, oncologists, surgeons, nurses and intensivists. “It’s an ‘all-hands-on-deck’ kind of thing,” he said.

Hematology and Oncology, Inside Pediatrics

Charting New Ground in Treating Blood Clots in Infants

UAB assistant professor of pediatrics and Children’s of Alabama hematologist-oncologist Hope Wilson, M.D., is researching long-term anticoagulation for high-risk children thanks in part to a American Society of Hematology fellowship.

Venous thromboembolism (VTE) is an increasing problem in pediatrics and can be associated with significant morbidity. Although most children are at low risk for recurrence, some have ongoing risk factors, which increases their risk for having further thrombosis. Yet there is no specific guidance on the optimal duration of treatment for such patients.

Well, not yet, anyway. But if research from Children’s of Alabama hematologist-oncologist Hope Wilson, M.D., is successful, that question will have an answer.

This year, Wilson was named one of 23 American Society of Hematology (ASH) Clinical Research Training Institute (CRTI) participants, a prestigious award that will help fast track her research on long-term anticoagulation for high-risk children. The fellowship is a unique, year-long education and mentoring program for hematology fellows and junior faculty at academic medical centers with the opportunity to interact “with the finest in the field,” Wilson said.

Throughout the year, Wilson will receive intense review and critical feedback on her project. The goal is to have a polished proposal to submit for external funding at the end of the program. But the proposal is just the beginning of what the grant means for her career. “There is a lot of greatness that can happen as a result of the exposure,” she said, including lasting mentorship relationships and critical networking opportunities for potential future collaborations.

The CRTI program kicked off virtually in August, focusing on the foundation, methodologies, and application of patient-oriented clinical research. Participants will meet regularly throughout the year concluding in May 2021 at ASH headquarters in Washington, D.C.

Wilson’s interest in this topic came, in part, from the patients she sees in Children’s new pediatric thrombosis clinic, which she helped develop. The overall goal of the thrombosis program is to improve care for children affected by VTE. To this end, the team has worked to develop protocols and algorithms to standardize treatment for these children, who come from throughout Alabama as well as neighboring states. In just the past year, more than 100 patients have passed through the clinic, many with recurrent clots. 

That’s the population she’s focused on in her research. “Findings from this research will help fill this knowledge gap and provide critical data to inform clinical decision making, changing the way that we manage children who require long-term anticoagulation,” she said.

Hematology and Oncology, Inside Pediatrics

Addressing the Unmet Needs of Adolescent and Young Adult Patients With Cancer

Julie Wolfson, M.D., assistant professor of pediatrics at UAB and Children’s of Alabama, helped develop the Adolescent and Young Adult (AYA) Oncology Program.

There’s the pediatric cancer population, those younger than 15. And the adult cancer population, those 40 and older. And then there’s the “in-between” patients, those ages 15 to 39, defined as adolescents and young adults (AYA), who sometimes seem as if they’ve left behind when it comes to the dramatic improvement in cancer outcomes.

“Even though they may have the same diagnosis as the 14-and-under group and the 40-and-older group, we haven’t seen the same improvement in survival as the other groups,” said Julie Wolfson, M.D., assistant professor of pediatrics in the University of Alabama at Birmingham (UAB) School of Medicine Institute for Cancer Outcomes and Survivorship.

In talking to adolescents and young adults with cancer, she said, “you learn that they’re not getting things that are important to them.” This includes financial and psychosocial support, as well as information on fertility preservation. They’re also not enrolling in clinical trials, “and we know that outcomes correlate with clinical trial enrollment.”

To address the problem, the hematology/oncology teams at UAB and Children’s of Alabama developed the Adolescent and Young Adult Oncology program for these “in-between” patients.

The team received seed funding in 2018 from Hyundai Hope on Wheels to develop the program’s infrastructure. The Vestavia Hills High School Rebels Impact through Service and Engagement (RISE) program, through the O’Neal Comprehensive Cancer Center, helped raise money for the program, enabling its expansion.

Nearly 200 AYAs have participated so far. Patients are matched with potential clinical trials and receive fertility preservation counseling and a psychosocial screen from the program’s adolescent and young adult social worker. An online support group for those 25 and younger is available.

A group of specialists from each cancer type meet in a monthly (now virtual) tumor board. “Patients really benefit from us all sharing our knowledge,” Wolfson said. Indeed, research shows improved outcomes with greater collaboration between adult and pediatric health care providers.

The feedback from the health care teams and the patients and families has been very positive, she said. “Patients express relief that someone ‘gets it,’” Wolfson said. “That they’re not a 5-year-old who wants to look at the goldfish and they’re not a 65-year-old with grandkids. There’s a lot of emotion involved and to process all that with someone at their developmental level is really important for them.”

None of this would have been possible without the leadership from the pediatric and adult hematology/oncology programs, she said. “Every AYA program looks different but ours is one of the more comprehensive I’ve seen across the country because we have amazing, collaborative clinicians. If people weren’t willing to play together in the ‘sandbox’ the way they are it wouldn’t be as successful.”

Hematology and Oncology, Inside Pediatrics

Xenograft Program Discovering New Therapies For Pediatric Cancer

Elizabeth Beierle, M.D., center, and Jamie Aye, M.D., right, run one of the few pediatric xenograft programs in the U.S. out of Children’s of Alabama.

Although the story of pediatric cancer over the past 20 years is one of success, there are still areas where the news remains grim, particularly for pediatric solid tumors. In addition, the therapies used to treat pediatric cancers can have long-lasting consequences and even increase the risk of other cancers.

Which makes identifying novel agents with better outcomes and fewer side effects so critical. Enter the xenograft approach, in which cancer tissue taken from the child is implanted into an animal model, allowing for more precise targeting of potential therapies.

“There are xenograft models in the adult population to find novel agents, but the pediatric model is very rare,” said Elizabeth A. Beierle, M.D., a pediatric surgeon at Children’s of Alabama who focuses on pediatric surgical oncology. She, along with pediatric hematologist-oncologist Jamie M. Aye, M.D., run one of the few pediatric xenograft programs in the country out of Children’s.

“These patient-derived xenografts more closely mimic what’s going on in the human,” said Beierle. Otherwise, researchers have to use cells from tumors gathered more than 50 years ago and cultured under artificial conditions. “A lot of those tumors lost the genetic and phenotypic characteristics from the original tumor,” she said. “So when we try to investigate new drugs, we often see that what happens in the tissue culture is not what’s happening in humans.”

Plus, testing compounds in a petri dish misses the reality of a cancer in a living model, including the cells that surround the tumor and the blood vessels.

The xenograft process takes time: six months to a year before the tumors grow and experiments can begin. But seven years after the Children’s initiative began, several therapies are showing promise, with some ready to move into Phase 1 clinical trials.

One is a viral therapy for pediatric solid tumors that infects tumor cells and releases an inflammatory cytokine that attracts other inflammatory cells to attack the tumor cells. Another inhibits a protein found in pediatric liver tumors.

The barrier to clinical trials, said Beierle, is funding. While the program has received strong support from community organizations, more is needed.

One thing that isn’t a problem is obtaining the biopsy tissue for the xenograft bank. “We’ve never had a family say no,” said Aye. “They understand that the research may not affect their child, but they hope it will help other children.”

Hematology and Oncology, Inside Pediatrics

Improving the Diagnosis of Kidney Disease in Patients with Sickle Cell Anemia

Jeffrey Lebensburger, D.O., was recently awarded a prestigious National Institutes of Health R01 grant to identify early signs of kidney disease in children with sickle cell anemia.

Up to 70 percent of adults with sickle cell anemia will develop chronic kidney disease, many of whom will require dialysis or transplantation. But since the damage often begins in childhood, identifying the early signs of kidney disease could shift that trajectory.

That’s the goal of Jeffery Lebensburger, D.O.’s research at Children’s of Alabama, for which he was recently awarded a prestigious National Institutes of Health R01 grant. Julie Kanter, M.D., who co-directs the Comprehensive Sickle Cell Center at the University of Alabama at Birmingham (UAB), is also involved.

“This project will develop a novel approach to monitoring changes in kidney function over time that is specific for patients with sickle cell anemia,” said Lebensburger, who directs UAB’s hematology section in the Division of Pediatric Hematology. “This will improve our clinical capacity to identify sickle cell anemia patients who are at risk for chronic kidney disease and who may benefit from additional prospective therapies.”

The early signs of kidney disease are usually silent. By the time obvious markers like protein in the urine develop, the loss of kidney function is often too advanced to reverse. “We need to control it in childhood,” Lebensburger said. Particularly since people with sickle cell anemia who go on dialysis are eight times more likely to die from kidney-related complications within seven years than those without the disease.

“Given the high mortality early in life from kidney disease, it is vital that we monitor kidney disease progression in children and adults,” he said. But the standard glomerular filtration rate (GFR) blood test provides, at best, a “guess” of kidney function. The tests also weren’t developed for sickle cell patients, he said. The gold standard, a measured test of how well the kidney eliminates a contrast agent, takes four to six hours and is very expensive.

“For us to appropriately track kidney function in this population and prevent the devastating complications of renal disease in our patients, we need a GFR equation that is validated for those with sickle cell, not for other populations,” Lebensburger said. Which is what his research is designed to do.

“We’re starting from scratch to develop this,” he said, performing normal blood work in 200 children and 200 adults and then developing a new calculation of kidney function that is valid for our sickle cell patients. “Then we’ll know what’s happening and can better track patients’ kidney function and prevent the devastating effects of kidney disease.”

Hematology and Oncology, Inside Pediatrics, Neurology & Neurosurgery

Big Changes Coming to Children’s of Alabama’s Neuro-Oncology Division

Children's Cancer Hospital_WEB

The Pediatric Neuro-Oncology Program at Children’s of Alabama will launch new initiatives this year, including forming a relationship with Children’s Cancer Hospital in Cairo, Egypt, pictured above.

Girish Dhall, M.D., can quickly tick off the attributes of Children’s of Alabama’s Pediatric Neuro-Oncology Program that lured him from Children’s Hospital Los Angeles to become division director for the Hematology, Oncology, and Blood and Marrow Transplantation Program as well head of the Neuro-Oncology program here. “It’s a very robust and academically active program in the country,” he said. “One of the strong points is that we have four neuro-oncologists, four pediatric neurosurgeons, two pediatric neuroradiologists and one pediatric neuropathologist. This is not available in most hospitals in the country.”

Indeed, the Pediatric Neuro-Oncology Program at Children’s of Alabama is one of the strongest in the country, treating between 50 and 70 newly diagnosed patients a year and participating in cutting-edge clinical trials for children with brain tumors.

In 2020, Dhall and his team will welcome their first neuro-oncology fellow. “So we will train the next generation of pediatric neuro-oncologists,” he said.

“There is such a need to have more people trained,” Dhall said. “Pediatric brain tumors are the most common cancer in children and we don’t have enough people trained to treat them.”

“Neuro-oncology is very specialized,” said pediatric neuro-oncologist Laura “Katie” Metrock, M.D., who will run the fellowship program.  “The general hematology/oncology fellowship is more broad. This opportunity provides a full year of exposure to all aspects of neuro-oncology that are not available in the general fellowship.”

Metrock, who completed her own neuro-oncology fellowship at Emory University in Atlanta before coming to Children’s of Alabama, noted how much she appreciated her year of training. “I’m very excited to help others in that phase of their career,” she said. “If they choose to stay here then they will be helping kids in our community and if they go to other centers it provides more opportunity for collaboration.”

Metrock is also leading initiatives in neurofibromatosis (NF), which predisposes patients to nervous system tumors. “I took the position at Children’s of Alabama because I saw such a huge opportunity here,” she said. She is excited about working with the Neurofibromatosis Clinical Trials Consortium, which is based at the University of Alabama-Birmingham. The Consortium, directed by Bruce Korf, M.D., Ph.D., is a national leader in clinical and genetic studies on NF. “The ability to work directly in the front line of these trials coming through the Consortium was a huge opportunity,” Metrock said. “We have the opportunity to build something really special here for families and patients with NF.”

That includes a multidisciplinary clinic where children with NF-related cancers can obtain the variety of care they need from not only oncologists and hematologists, but geneticists, neurologists, endocrinologists and others. “We try to streamline their care and make sure they have access to other specialists, available therapies, and clinical trials,” Metrock said. That includes a partnership with the Pediatric Cancer Genetics Clinic. “We want to help the kids as they go through each phase and then ensure a smooth transition to the adult world,” Metrock said.

Among the other initiatives Dhall has begun is a global outreach in neuro-oncology. An oncologist from Vietnam recently trained in Alabama for two months and Dhall is now formalizing a relationship with the Children’s Cancer Hospital in Cairo, Egypt, which treats about 60 percent of the country’s entire pediatric cancer population. “We see about 150 pediatric cancer patients a year,” he said. “They see 4,000 a year. So the impact that we could have in helping train their doctors here is huge.”

Hematology and Oncology, Inside Pediatrics

Children’s of Alabama Ramps Up Pediatric Oncology Research Program


The faculty of the Pediatric Hematology, Oncology, and Blood and Marrow Transplantation program at Children’s of Alabama and the University of Alabama at Birmingham (UAB). The program is currently working to offer more potentially life-saving clinical trials to patients.

It’s only been a year since Girish Dhall, M.D., moved from Los Angeles, where he was an associate professor of pediatrics and director of the Neuro-Oncology Program at Children’s Hospital Los Angeles, to Birmingham to become division director for the Pediatric Hematology, Oncology, and Blood and Marrow Transplantation program at Children’s of Alabama and the University of Alabama at Birmingham (UAB). Yet he’s already made significant progress on one of his key goals: offering more potentially life-saving clinical trials to patients.

“We’re trying to increase our research portfolio through multiple mechanisms,” he said. Children’s already belongs to the largest pediatric cancer research organization in the world, the Children’s Oncology Group (COG), an international consortium of more than 200 children’s hospitals, universities, and cancer centers. Children’s of Alabama and UAB participate in the COG Phase I Consortium, the Neurofibromatosis Consortium and the Next Consortium, all of which conduct cutting-edge clinical trials for pediatric patients with nervous system tumors.

While COG is a major force in pediatric oncology, the number of trials it offers is limited. With about 150 new cancer patients a year seen at Children’s of Alabama, Dhall said, more opportunities are needed. “Even though we’ve come from a survival rate of zero 50 or 60 years ago to nearly 70 percent, 30 percent of patients still relapse,” he said.

Thus, Children’s of Alabama and UAB joined the Sunshine Project, which is a part of the National Pediatric Cancer Foundation. It emphasizes basic and translational research in the areas of bone and soft tissue sarcoma and brain tumor immunology, Dhall said. In addition, Children’s of Alabama and UAB are joining the ReMission Alliance Against Brain Tumors (RAABT), a University of Florida-led network of neuro-oncology, tumor immunology and genetics experts from top peer institutions as well as a community of vested collaborators and influencers affected by brain cancer.

To manage the expected growth in clinical trials, Dhall is also reorganizing the department’s clinical trial infrastructure to improve efficiency and recruiting additional staff to prepare for the anticipated increase. He also wants to add other scientists who can build on the department’s portfolio not just in brain tumors, but also in sickle cell disease and leukemia. “That’s my hope for the next year,” he said.

He predicts that the number of clinical trials, today at about 10, will double within the next two years.

“Patients who relapse after front-line therapy have a very poor prognosis with poor survival,” Dhall said. “So, for us to be able to offer treatment options here means they don’t have to travel to other sites like Atlanta or Memphis, which is a huge disruption for patients at the end of life.”

“As a physician,” he said, “this gives me hope and it keeps me going.”


Hematology and Oncology

Cancer Predisposition Clinic Aims to Change the Trajectory of Genetically Based Cancer

Li-Fraumeni syndrome. Von Hippel-Lindau. Rhabdoid tumor predisposition syndrome. Beckwith-Wiedemann syndrome. Retinoblastoma.

These are just a few of more than a dozen rare genetic conditions that predispose a child to cancer. Overall, at least 10% of children with cancer harbor a disease-associated pathogenic variant in a known cancer predisposition gene. While few can be prevented, regular surveillance can, at the very least, find malignancies early when treatment is most effective.

That’s the idea behind Children’s of Alabama’s Cancer Predisposition Clinic, now in its third year.

“We  provide comprehensive care and screening for these patients with the goal of detecting cancers at an early stage in order to provide the best care and outcomes for the patients,” said Elizabeth Alva, M.D., assistant professor in the University of Alabama at Birmingham (UAB) Division of Pediatric Hematology and Oncology. “It used to be there was nothing we could do about this terrible diagnosis,” she said. “Now we know there are definitely ways to look for cancers early and help patients.”

In addition, the clinic provides psychological support for families and determines if the genetic condition affects other family members, she said.

Typically, primary care physicians follow children with cancer predispositions. But those doctors may not be aware of or able to provide the level of evidence-based surveillance that Alva offers.

That’s why these clinics are a growing area in the pediatric hematology/oncology world, particularly at the larger children’s hospitals. “We felt that we definitely needed to provide that same level of care here in Alabama,” Alva said.

Alva and neuropsychologist Avi Madan-Swain, Ph.D., are currently following about 25 patients. Patients come to them through the pediatric cancer genetics clinic, where families are tested and counseled. Alva provides the screening, which ranges from regular ultrasounds to CT scans and MRI, while Madan-Swain addresses the family’s psychological needs.

One benefit to the clinic is that if there is a cancer diagnosis, the child and family are already comfortable with the hospital and the clinical team.

Alva is building a database of patients to gain a better understanding of disease development and progression, while Madan-Swain plans research around the psychological impact on families that have a child with a predisposition syndrome.

Understanding Genes
Learn more about the UAB Department of Genetics.

Hematology and Oncology

Meet Girish Dhall, MD, the New Division Director for the Hematology, Oncology, and Blood & Marrow Transplantation Program

Girish Dhall, M.D.

In January, Girish Dhall, M.D. was named division director for the Hematology, Oncology, and Blood & Marrow Transplantation program in the University of Alabama at Birmingham Department of Pediatrics and Children’s of Alabama. In May, he and his wife moved from Los Angeles, where he was an associate professor of pediatrics and director of the Neuro-oncology Program at Children’s Hospital Los Angeles, to Birmingham.

We talked to Dr. Dhall about his vision for the department and the transition to Alabama.

Q: What brought you to Children’s UAB?

A: What brought me here was the quality of the program at Children’s Hospital and UAB and the people here. I was looking for a new challenge and this program was looking for a leader who could help build and elevate the program. When I came here, I was really impressed by the high caliber of the people here, not just in the clinic but also in the research arena, as well as the existing infrastructure at Children’s and UAB, which made my decision quite easy.

Q: What do you mean by infrastructure?

A: The ability to conduct clinical trials and research is very solid on the UAB side, and the clinical care is very strong on the Children’s side. Plus, there are so many subspecialists you don’t have to send patients out of the hospital, which makes treating patients with chronic conditions like cancer much easier.

Q: What’s your top priority for the division of heme-oncology as its new leader?

A: My biggest priority is to build a well-rounded program — a program that is not only strong in its clinical mission, which is to provide the best treatment possible for children with cancer and blood diseases, but one that also has a strong research base, which includes clinical, basic, and translational research.

We already have a strong clinical program with top-notch faculty providing outstanding care to our patients as well as a strong clinical and translational research programs in the area of brain tumors, sickle cell disease, and survivorship. I hope to build on the existing strengths of the program and add clinical and translational research programs in leukemia and sarcomas. Eventually, my hope is that these efforts will lead to providing more cutting-edge therapies for children with cancer and blood disorders in the state of Alabama and the surrounding area for decades to come.

Q: Where do you see the fight against cancer in 10 years?

A: Over the last five decades, we have made significant strides in our fight against cancer. We are now able to cure approximately 80% of all childhood cancer patients compared to 10% in in the 1960s. However, the therapies we use, such as radiation therapy and chemotherapy, sometimes have lasting side effects on our patients, especially young children.

In the last decade or so, there has been an explosion of scientific techniques that have helped us understand the biology of these cancers and what makes them grow. In the next 10 years, I hope that we will have a shift in designing treatments that are directed specifically at the cancer cells and genetic derangements within them and spare normal organs and tissues, i.e., provide therapies that are more effective and less toxic.

Q: You chair the Young Investigator’s Committee for Children’s Oncology Group. What advice do you have for young researchers?

A: Research can be extremely, extremely frustrating in the sense that it takes a long time to complete and obtaining funding is a huge challenge because it’s extremely competitive. So my advice is don’t give up.

Q: What are you most excited about regarding living in Birmingham?

A: We’re having a great time. We go on a walk with our dog in the evening and we do less walking and more talking with the neighbors. We love the people and their Southern hospitality, the bar-b-que, the blue skies and less traffic.

Q: And the summer heat?

A: Everyone told us July and August would be a killer, but it hasn’t been that bad.

The Latest on Transplantation

Learn more about the UAB Blood and Marrow Transplantation & Cellular Therapy Program.

Hematology and Oncology

Pain Clinic Provides Safe Space for Sickle Cell Patients to Receive Treatment

Raven Myrick, CRNP, right, places a virtual reality headset on patient Olivia Parker in Children’s of Alabama’s Sickle Cell Pain Clinic.

Throbbing. Sharp. Pounding. Dull. Stabbing. Cutting. Gnawing.” That’s how patients describe the pain of sickle cell disease.[1]

While current guidelines call for patients to receive pain medications within an hour of arriving at a treatment center or emergency room (ER), that’s difficult to achieve in a busy emergency department (ED), said Jeffrey Lebensburger, D.O., MSPH, who directs the Cancer and Blood Disorders’ hematology section at Children’s of Alabama. This delay in pain relief allows the pain intensity to increase and may lead to a child requiring hospitalization. In addition, in this era of an opioid epidemic, more families report discrimination when they ask for opioids for pain and are accused of drug-seeking behavior.

That’s why Children’s started its own sickle cell pain clinic, Lebensburger said. It’s not just for patients in crisis. “About half our patients also experience daily, chronic pain,” he said.

Targeting Pain

The clinic has four main goals:

  • Provide care in a familiar setting
  • Reduce the number of hospitalizations
  • Get the patient’s pain under control more quickly
  • Provide non-medicine treatment strategies for pain

The clinic is run out of the regular pediatric hematology clinic with a dedicated nurse practitioner, Raven Myrick, CRNP. Patients can call a hotline or email the hematology team any time and get a same-day or next-day appointment. Eventually, the team would like to offer night hours.

“Our families appreciate being able to go to the clinic versus the ER,” Myrick said. “It’s a familiar, nonjudgmental atmosphere. It’s not our job to say if they are having pain or not. Our job is to make them feel comfortable and to show that we care.”

“It’s not a cure for their disease,” she said, “but the pain clinic gives them hope that someone is working to make them feel better.”

Virtual Reality as Treatment

The clinic uses Starlight Virtual Reality (VR) headsets, donated to Children’s of Alabama by the Starlight Children’s Foundation, to teach kids how to relax and breathe through the pain. Studies have found that VR can reduce pain sensation. When patients come to the clinic, they first spend at least 10 minutes with a VR deep breathing/visualization program. Then they can continue to use other programs as a distraction technique or even just watch movies. “Being able to watch Netflix in the virtual reality environment without cues from other people provides superior distraction to non-virtual reality distraction,” Lebensburger said. Then they go home with a list of relaxation apps to download on their phones.

Patients also receive pain kits to help with distraction, including items like squeezable balls and Silly Putty, as well as their own “tools,” such as action figures and trading cards that they can only play with during a pain crisis.

The clinic has seen more than 30 patients since it opened in Marchand had just three hospitalizations, which is “an amazing outcome for our patients,” Myrick said.

“We know our patients and are familiar with what works for them with use of our Individualized Pain Plans,” Myrick said.

Cancer Fighters

Get more information about the Cancer and Blood Disorders Program at Children’s of Alabama.

[1] Ballas SK, Gupta K, Adams-Graves P. Sickle cell pain: a critical reappraisal. Blood. 2012;120:3647-3656;