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cancer

Hematology and Oncology

Finding Novel Treatments for Cancer

The Developmental Therapeutics team at Children’s of Alabama is working to develop new treatments for children with cancer.

Having cancer is challenging enough for a child and their family, but when the standard treatments aren’t working, they find themselves searching for answers. As Director of Developmental Therapeutics at Children’s of Alabama and the University of Alabama at Birmingham (UAB), Jamie Aye, M.D., is responsible for finding those answers.

Aye was appointed to the position in August 2025 after serving as associate director since 2023. In her current role, she leads a team dedicated to developing more effective, less toxic therapies for children with cancer. In some cases, the cancers are rare; in other cases, the cancers are recurrent with no available curative treatment. Either way, developmental therapeutics can offer the possibility of a solution.

“It provides the family with hope that we will discover newer options that their cancer hasn’t seen,” said Aye, who’s also an associate professor of Pediatrics at UAB.

The team achieves this through a two-pronged strategy. One prong involves working to develop new therapies for cases that are recurrent or difficult to treat. “It’s really hard to see a patient go through that,” Aye said. The other prong is developing less-toxic therapies that reduce immediate and long-term side effects—for example, “If we’re able to use a new immunotherapy in conjunction with radiation that allows us to give the radiation at a lower dose,” Aye said, “now that patient has a lower risk for a secondary cancer from radiation.”

The program has a history of success. A few years ago, Gregory Friedman, M.D., one of Aye’s predecessors, led a successful early phase trial that used a new type of immunotherapy to treat patients with recurrent or progressive brain tumors.  Friedman’s novel treatment was the result of an investigator-initiated trial, where the team takes the work its researchers are doing and turns it into a clinical trial. Developing these types of trials is the overarching goal of the program. And the research avenues are broad, Aye says, “from researchers within pharmacology, radiology, immunology or genetics,” to name a few. Aye works to bring these researchers together “so that hopefully we can see commonalities between the different projects that we’re working on, so that people aren’t siloed and can collaborate through either new technologies, new biomarkers to measure how much disease, new immunotherapies, or new ways of detecting disease by imaging,” she said.

Any type of research the team is doing has the potential to turn into an effective treatment. “It could even just be a pathway a researcher is investigating,” Aye said. “Hopefully through collaborations that we’re establishing, we can see how that pathway may relate to a particular cancer that we’re hoping to find a treatment for—and then from that, test a new therapy, and then if it works in the lab, seeing how we can get it to a patient.”

Collaborations are one of the keys to making these trials happen. As director of the program, Aye works to build relationships both near and far. Locally, she leads an annual research retreat to bring together researchers—both basic science and clinical researchers—to work on developing investigator-initiated trials using novel therapies. She developed this retreat during her time as associate director of the program. Nationally, she works with industry and pharmaceutical companies—to investigate new therapeutic options—and with consortia to add to the program’s portfolio of trials available to patients at Children’s and UAB.

Aye is already working toward more investigator initiated trials, “which, hopefully in the coming years, will come to fruition,” she said, to provide more options and more hope for children with cancer. “It’s why we do what we do,” she added. “Because we want to improve their outcomes and also find treatments that don’t leave them with lifelong side effects.”

February 16, 2026 by
Hematology and Oncology

A New Chapter in Neurofibromatosis Care

Rebecca Brown, M.D., Ph.D., (left) and Katie Metrock, M.D., lead the Neurofibromatosis and Schwannomatosis Clinic at Children’s of Alabama.

Neurofibromatosis (NF) is a complex genetic disorder of the nervous system, marked by the growth of tumors—malignant and benign—along nerve sheath cells. In addition to tumor growth, it impacts nearly every organ, including the skin, eyes, heart and bones, and it causes neurological symptoms such as ADHD, speech disorders and learning disabilities.

There is no cure, although new treatments are emerging. Thus, it requires intensive management with a multidisciplinary team, which is exactly what the Neurofibromatosis and Schwannomatosis Clinic at Children’s of Alabama and the University of Alabama at Birmingham (UAB) offers.

Neuro-oncologist Rebecca Brown, M.D., Ph.D., directs the adult portion of the clinic, and pediatric neuro-oncologist Katie Metrock, M.D.,directs the pediatric side. The two work closely together, with Brown seeing patients as young as 12 and both teaming up to create a transitional program for children moving into adult care.

“The disease affects every aspect of these patients’ lives,” said Brown, who recently moved to UAB from Mt. Sinai Health System in New York City. “I tell people that I’m the most generalist sub-specialist that exists because NF experts are the only ones who really understand, pay attention to and address all these many aspects.”

“Even though they all have the same diagnosis of NF, every patient is different, and every family is a little different,” Metrock said. “So how do we approach care in a way that makes the most sense for each patient?”

For Brown, that means shifting the adult clinic from one that’s been focused on diagnosis, genetics and disease phenotype to one that can have a greater clinical impact on patients. “My focus is patient forward,” she said. “I’m interested in addressing the problems that patients experience, especially with regard to supportive care—including psychological care and pain management—and delivering the most recent recommendations for tumor surveillance and other health risk factors such as hypercholesterolemia, stroke and heart disease.” She also wants to bring more clinical trials to UAB to “try to push the envelope as far as developing novel therapies for their conditions.”

In addition, she offers a resection clinic to remove cutaneous tumors. After going through special training, she started it for two reasons. “The first is that patients have a difficult time finding a surgical specialist who has the interest and the bandwidth to remove these tumors,” she said. “And second is that the out-of-pocket costs can be prohibitive.” She can remove multiple tumors in a single 90-minute session, reducing both the financial burden and time commitment for patients.

On the pediatric side, non-medical specialists such as social workers, child life specialists and school liaisons provide the holistic level of support children and their families require. “There’s so much that needs to be to be managed outside of our clinic with these children,” Metrock said. “So the social worker and school liaison really help bridge the gaps between school and life.” The clinic also works closely with the Hope and Cope Psychosocial and Education Program to help address neurocognitive and mental health issues.

“We’re very committed to providing care for these patients, not just for their tumors, but for how the disease affects their life outside of our clinic,” Metrock said. “But I always felt we could grow. So I’m very excited that Dr. Brown is here and that we have a new push for what we can do for these families.”

That includes building on the existing multidisciplinary foundation and working on streamlining care for families so they don’t have visit the hospital—which might be hours away from their homes—for multiple appointments.

“They have other children, they have jobs, they have everything outside in life. And so, us asking them to ‘come back, come back,’ can be quite overwhelming,” Metrock said. “So, how can we streamline their care so that they’re getting the best care they can in a way that allows them to keep living their life away from clinic in the hospital?”

That involves bringing more clinicians interested in the condition into the clinic as well as expanding an already robust clinical research program.

Indeed, research is embedded in the mission of the clinic. UAB is the headquarters for the Neurofibromatosis Clinical Trials Consortium (NFCTC), which coordinates research across 24 sites internationally.

Girish Dhall, M.D., who directs the Division of Pediatric Hematology, Oncology and the Blood and Marrow Transplantation Program at Children’s, leads the consortium. Since its inception in 2006, it has grown from nine to 24 sites with more than 72 investigators, according to Karen Cole-Plourde, the NFCTC operations center program director. It has also launched 17 clinical trials involving more than 500 patients, with eight trials currently in development; published more than 19 peer-reviewed papers with five in progress; and landed more than $5 million in funding from pharmaceutical companies, foundations and government sources.

In addition, UAB boasts one of the world’s most robust neurofibromatosis genetic labs, which has identified more than 3,000 NF type 1 mutations.

The research team also played a crucial role in developing selumetinib, the first FDA-approved drug for NF, which blocks the action of an abnormal protein that signals tumors to grow. This can stop or slow tumor growth.

While selumetinib has been a major step forward, more fast-acting targeted therapies are needed, Brown said. “These patients can develop new and enlarging tumors in a relatively short period of time,” she added. “There is very much a need and value in finding medications that can stabilize or shrink those tumors over the long term.”

In the meantime, she and Metrock focus on proactive management. “We’re very proud of what we have here,” she said, “and are very aware of the responsibility we have to move forward for these patients.”

July 18, 2025 by
Hematology and Oncology

A New Chapter for Hope and Cope

Kristin Canavera, Ph.D., aims to strengthen the Hope and Cope Psychosocial Program as its new director.

As Kristin Canavera, Ph.D., has settled in to her new role at Children’s of Alabama, she’s had a chance to meet with many of the patients her team serves. What she’s seen has not just impressed her—it has reinforced her ideas on how to improve their lives.

Canavera, an associate professor of pediatric hematology-oncology at Children’s and the University of Alabama at Birmingham (UAB), is taking over as the director of the Hope and Cope Psychosocial Program for the Division of Hematology, Oncology and the Blood and Marrow Transplantation Program. She arrived in the fall of 2024, and the patients she’s seen since then have left a mark on her.

“I think our kids are incredibly resilient, and they impress me every day with all they’ve gone through,” she said.

Canavera knows their struggles. A cancer diagnosis can be extremely challenging for both a child and their family—not just physically, but psychologically. “They’re dealing with real stressors,” she said. “There’s just a lot of support these families could benefit from.”

The psychological aspect of their experience is what she hopes to address and improve. It’s been the goal of the program since its inception, and Canavera says she’s lucky to inherit a program that’s robust and multidisciplinary. But she hopes to take it a step further.

“Given that psychosocial care is a critical component of overall health care for our pediatric hematology/oncology patients, my vision is to improve the integration of mental health care into the medical care of these patients,” she said. 

Canavera’s primary goal is to change the model of care from reactive to proactive. To that end, she plans to implement regular mental health screenings for patients diagnosed with cancer and blood disorders. These will take place at various times throughout the patient’s treatment journey.

Canavera plans to create psychoeducational materials designed to help the patients better understand the psychosocial services and interventions the program offers. 

She also wants to expand bereavement support services, including a parent mentor program, where experienced parents whose children have been in the hospital can support those newly navigating the medical system.

“Parents really want to talk to other parents who’ve been through it,” Canavera said. “That’s their best support. Even though I’ve worked with this population for several years, I haven’t walked in their shoes.”

Canavera also plans to expand services to traditionally underserved populations, particularly adolescents, young adults, and patients with sickle cell disease.

In all of her strategies, Canavera aims to take a family-centered approach, which she says will be crucial in strengthening and expanding psychosocial services.   

January 27, 2025 by
Hematology and Oncology

Expanding palliative care for cancer patients

Children’s is working to improve and expand palliative care for heart disease and cancer patients. (Stock photo)

Two patient deaths sadly stood out to Children’s of Alabama pediatric oncologist Emily Johnston, M.D, MS., when she was a pediatrics resident. Both were examples of how systemic and communication issues could thwart the goal of providing gravely ill children with the best death possible. Both fueled Johnston’s career trajectory.

In the six years since she joined Children’s, Johnston—also an assistant professor of pediatric hematology-oncology and a member of the Institute for Cancer Outcomes and Survivorship at University of Alabama at Birmingham (UAB)—has led efforts to significantly expand pediatric palliative care to more young patients. Before her tenure, only 23% of children dying of advanced heart disease and 58% of children dying of cancer at Children’s received palliative care, but she and colleagues have boosted those numbers by creating standard referral criteria for certain high-risk patients so they can get palliative care starting at diagnosis.

“Unfortunately, kids are dying whether I’m part of the process or not,” Johnston said. “But I’d like to make that better, and it’s really an honor to be with patients and families during the journey and learn from their incredible experiences.”

While pediatric palliative care is becoming better recognized, much variation still exists in how pediatric hospitals tend to view the subspecialty. Additionally, some pediatric specialists feel they don’t need help from pediatric palliative care, “not recognizing that it also offers symptom, spiritual and psychosocial support,” Johnston said.

“Providers get really anxious about introducing palliative care to families, thinking it’s going to take away from a family’s hope or impact their relationship with the patient,” she added. “But families, on the other hand, say it actually helps them with hope and that they wish they knew more about what palliative care does.”

Johnston’s research is helping to define quality end-of-life care and disparities around poverty, race, ethnicity and other factors that could potentially lead to targeted interventions. The biggest barrier she has faced centers around conducting bereaved parent research.

“We still face regulations from IRBs (institutional review boards) and funders that get really nervous that we’re causing harm by doing research, but data show parents want to participate and that it’s beneficial,” she said. “They have so much wisdom to offer, and the vast majority want to share their stories and improve end-of-life care for future children.”

By spearheading efforts to expand palliative care at Children’s, Johnston has won over many oncology providers who appreciate the additional support in caring for a patient population fraught with emotional and practical challenges. The process has also increased palliative care skills among oncology team members across all career levels at Children’s and UAB.

“We’ve learned a lot in the past 10 years about the best ways to have difficult conversations,” she said. “It’s not just younger attending physicians who have benefited from some of the learning about how to give difficult news in an evidence-based way.”

Ultimately, Johnston feels the efforts set Children’s and UAB apart from many other pediatric institutions across the country—most of which can’t represent patients from the South, many of whom are Black and live in rural areas. “I think we’re setting ourselves up as a leader in pediatric palliative care research,” she said.

January 9, 2025 by
Hematology and Oncology

Building a national leader in clinical trials

Since joining Children’s in 2019, Girish Dhall, M.D., has helped the hospital become a national leader for clinical trials.

When Girish Dhall, M.D., arrived at Children’s of Alabama in 2019, he inherited a division with a plethora of strengths: great facilities, compassionate physicians and a robust clinical trials program. He knew he was somewhere special. Still, he knew it could be better—a national destination center for research and clinical trials. That became his vision. As he began his new role as director of the Division of Hematology, Oncology, and the Blood and Marrow Transplantation Program, he immediately started work on one of his first objectives—expanding the clinical trials program.

Prior to Dhall’s arrival, the hospital offered many clinical trials through the Children’s Oncology Group—the largest consortium in the U.S.—for children who were newly diagnosed with cancer. For patients who had relapsed or had experienced progression of their disease, however, the options were limited. Dhall knew the hospital would need to join more consortia—groups of hospitals that collaborate to offer large-scale clinical trials that might be impossible for a single institution. For Children’s, joining more consortia would give patients access to a wider array of clinical trials.

Dhall and his team of experts began applying for membership in various consortia. Five years later, Children’s has more than doubled the number in which it is enrolled. “What that did,” Dhall said, “is gave us access, suddenly, to a large number of clinical trials for this group of patients that we didn’t have great options for.”

The benefits for Alabama and beyond

For children in Alabama with cancer, the new clinical trials are game-changing. Previously, patients may have had to travel out of state or even to another part of the country to access the trials they needed. “And that was only accessible for some families who have the resources to do it,” Dhall said. “For a large number of our patients, that was not possible.”

Now, those children have access to the same clinical trials without having to leave the state. That’s big even beyond Alabama. Dhall says patients come from Mississippi, Louisiana, North Florida and other parts of the Gulf Coast region for the trials. The hospital even gets referrals from other countries. “The impact of having access to these clinical trials is great for this region,” he said. “It’s a good challenge to have to accommodate all those patients and provide access. So I think it’s been great not just locally, but regionally as well.”

Jaxan’s story

For Jaxan Jernigan and his family, the new trials are already paying off. When he was 6 years old, he began experiencing headaches and seizures. At the local hospital in Pensacola, Florida, doctors discovered a large brain tumor. After a 14-hour surgery, they determined it was a high-grade aggressive tumor called a CNS embryonal tumor.

At Children’s, Dhall was leading the Head Start 4 clinical trial—one of the new trials added through his expansion efforts. Jaxan’s parents agreed to have him receive therapy on this trial, and he went through several rounds of intensive chemotherapy and three stem cell transplants followed by 30 days of brain and spinal irradiation. Nearly eight months later, Jaxan was considered to be in remission. Today, he’s back to an active life. “We owe so much of that to Dr. Dhall and the entire staff at Children’s,” Jaxan’s dad, Craig, said. “It was obvious that everyone at Children’s genuinely cares, and that’s truly inspiring.”

Head Start trial

The Head Start trial is just one example of the opportunities Dhall brought. It opened in 1990 and is currently in its fourth iteration, now involving more than 60 institutions across the U.S., Canada, Australia, New Zealand and Europe. Dhall is a national co-chair of the study.

“The idea behind Head Start is to give high-dose or intensive chemotherapy up front so that we can either avoid whole-brain irradiation completely for these infants and young children or be able to give really reduced dose and volume of irradiation,” Dhall said, “and keeping in mind that we want to maintain the survival that we see with irradiation, but with much less long-term side effects.”

Just in the last couple of years, researchers involved in Head Start have seen big results. At an international conference in Philadelphia in 2024, Dhall reported on a group of patients with SHH-activated medulloblastoma, a highly malignant brain tumor. Using the Head Start treatment strategy, doctors were able to cure more than 95% of the patients without using radiation therapy to the brain, Dhall said. “So that actually moves the field significantly forward,” he added.

Other trials

Treating brain tumors is just one of the program’s focal points. The hospital also has teams that specialize in blood disorders, leukemia and lymphoma, solid tumors such as kidney and liver cancer and more.

Matthew Kutny, M.D.

“So you can imagine the breadth of the trials that are involved,” said Matthew Kutny, M.D., director of the Children’s Pediatric Clinical Trials Office—a role Dhall held until he turned it over to Kutny in 2022. Since then, Kutny has continued to build the program and seen a lot of exciting developments, including the move toward targeted therapy and immunotherapy. These can allow patients, when possible, to avoid chemotherapy, which can damage healthy cells in the process of killing cancer cells. Targeted therapies zero in on the changes that occurred in the cells to make them cancerous. Kutny says these treatments have been successful against leukemia and solid tumors. Immunotherapy, on the other hand, engages a child’s immune system to fight off cancer as if it were an infection. “There are several exciting immunotherapy research projects that we’ve been able to participate in and lead here in Alabama,” Kutny said.

Children’s also performs bone marrow and stem cell transplants, which have proven life-saving for many patients. The stem cell transplant team offers CAR T-cell therapy, in which a patient’s own immune cells are taken into a lab and programmed to fight their cancer.

“We’ve been able to offer that to some of the children of Alabama here who otherwise would have had to go through those very intensive treatments with chemotherapy and stem cell transplant,” Kutny said. “And they’ve been able to respond to these new cellular therapies, and it’s really amazing to see how well they tolerate the treatments, and it’s been a great success in our era of oncology.”

A promising future

Because of the efforts of Dhall and Kutny, Children’s now has one of the nation’s largest clinical trial programs in pediatric oncology and hematology. “I’ve been really blessed to be a part of this team that has seen extreme growth over the last five years,” Kutny said.

More growth may be coming. Kutny says the team is actively expanding the number of consortia and partnerships with other hospitals. With cellular therapy and immunotherapy, they’re already offering an array of complicated, leading-edge trials. “We can offer, across a wide spectrum, the best clinical trials that are out there right here for patients in Alabama regardless of the type of disease that the patient is facing in oncology or hematology,” he said. “And that’s been great for the families of these patients to know that they come to Children’s of Alabama and they’re receiving the very best care that can be offered.”

In the process, they’re contributing to research that can help develop more advanced treatments. “We are making an impact, not just locally, but nationally and globally,” Dhall added.

Just the way he envisioned it when he first arrived.

August 13, 2024 by
Hematology and Oncology

Leading with a focus on the patient

Katie Metrock, M.D., manages one of the nation’s largest pediatric neuro-oncology programs at Children’s of Alabama.

According to data from the CDC, brain and spinal tumors are the leading cause of death among childhood cancer patients. Katie Metrock, M.D., director of the pediatric neuro-oncology program at Children’s of Alabama, says being diagnosed with one of these cancers is “one of the scariest things that can happen to a family.”

The program, which is part of the Alabama Center for Childhood Cancers and Blood Disorders at Children’s, is one of the largest in the U.S. It offers a focus on treating children and adolescents with brain and spinal cord tumors as well as neurofibromatosis, a genetic condition that predisposes children to tumors. It is a leading center for clinical studies and basic research into these conditions, and it offers a neuro-oncology fellowship. Metrock took over as director of the program in October 2023.

“It is my goal that every patient that comes through this door feels like they have a team of people that are fighting for them,” she said. “I don’t want any patient to ever feel like they’re alone or any family to feel like they needed more.”

For Metrock, the battle has a personal element to it. When she was young, her aunt developed a brain tumor, and Metrock remembers visiting her in the hospital. “I was very fascinated by all that was happening,” she said. Her aunt “did quite well,” she added, and the experience sparked her interest in the treatment of brain tumors. In college, that interest grew when she worked at a camp for children with cancer and met a young patient with a brain tumor.

“So when I went to medical school and residency, I tried to keep an open mind and looked at all the different types of fields,” Metrock said. “But I think ultimately I knew this is the space I wanted to be in—to help these children and to improve their treatment options.”

Now, that’s her daily goal. As the program’s director, she leads a team that includes four pediatric neuro-oncologists, three pediatric nurse practitioners, child life specialists, chaplains, social workers, neuropsychologists and researchers. They collaborate closely with neurosurgeons, neurologists, advanced/palliative care physicians and radiation oncologists to provide comprehensive care tailored to each patient’s needs.

“It takes all of us working together to help patients and their families through this entire process,” Metrock said. “Ever since coming here to Children’s, I have been blown away with the teamwork approach.”

The center’s mission extends to research, which is desperately needed, Metrock added. “We have to do better for these kids,” she said. “Making research at the forefront of our mission is huge.”

To that end, the program participates in several clinical trial research consortia, including the Children’s Oncology Group, the Pediatric Neuro-Oncology Consortium (PNOC), and the Sunshine Project. The partnerships allow Children’s to offer leading-edge clinical trials to patients while contributing to the broader advancement of the field.

For instance, researchers are investigating methods to deliver medications more effectively across the blood-brain barrier, which remains one of the greatest challenges to improving survival. They also are conducting clinical trials into less invasive, safer and more effective treatments for tumors like medulloblastoma, craniopharyngioma and germ-cell tumors. Additionally, they’re exploring vaccines to target high-grade gliomas.

The program is also expanding its educational reach globally. A new partnership with St. Jude Children’s Research Hospital aims to develop educational programs in neurofibromatosis for areas with limited expertise in treating neurofibromatosis-related tumors. The team also has a partnership with Washington University School of Medicine in St. Louis for a global neuro-oncology fellowship.

The primary focus, however, remains the child. “When a child comes in, the first thing we need to know is what type of tumor do they have and how do we treat it,” Metrock said. “But I think you can get tunnel vision with that. You really have to see that this is a child, and they have their whole life around them and then the life that they’re going to move forward with after this. So how do we meet them where they’re at and how do we help them move forward with the best success possible?” Those are the questions she aims to answer for each patient.

August 9, 2024 by
Endocrinology

Addressing Endocrine Issues in Cancer Survivors

Dr. Nicole Barnes’ clinic tackles the many endocrine-related challenges cancer survivors can face.

When pediatric endocrinologist Nicole Barnes, M.D., started at Children’s of Alabama in December 2021, it made sense for her to begin a clinic designed specifically for childhood cancer survivors, who often experience endocrine issues from their cancer or treatment. Barnes came to Children’s from St. Jude Children’s Research Hospital in Memphis, where she specialized in survivorship care.

“About 50% of children who are cancer survivors have at least one endocrine disorder,” she said. These endocrinopathies include growth hormone deficiency, disorders of puberty, thyroid abnormalities, poor bone mineral density and metabolic disorders. Some survivors are also at risk for infertility. Barnes started the Endocrine Care for Children with Cancer Clinic to address all these issues.

“Primary care physicians may not be accustomed to identifying endocrinopathies associated with survivors’ treatment exposures,” Barnes said. Even general pediatric endocrinologists may not be familiar with the clinical guidelines published by the Children’s Oncology Group for monitoring childhood cancer survivors. “We’re taught in training about cancer-related endocrine disorders, but until you’ve treated multiple children with cancer you may not fully appreciate the impact endocrine disorders can have,” she said.

One reason is the subtlety of the signs and symptoms. “For instance, a premenarchal 13-year-old female may not be concerning in the general population,” Barnes said. “However, a premenarchal 13-year-old female childhood cancer survivor exposed to total body irradiation and alkylating chemotherapy agents is at high risk for ovarian failure and should be monitored and treated accordingly.” 

Barnes’ clinic currently meets twice monthly. So far, she has seen several patients during and after treatments. She hopes to coordinate more closely with oncology and the Children’s of Alabama Taking on Life after Cancer (TLC) Clinic—which provides a varied and multidisciplinary approach to managing the special needs of pediatric cancer survivors—in order to catch endocrine issues early.

She hopes to bring more attention to endocrine disorders in pediatric cancer survivors while educating clinicians and families that remission is not the end of a child’s cancer-related health journey. “Ongoing monitoring for growth, puberty, bone health and metabolism remains essential,” she said

“I enjoy treating these children and adolescents. They’re survivors,” Barnes said. “Although cancer may rob them of some of their potential, I have the opportunity to optimize their growth and development.”

August 22, 2023 by
Hematology and Oncology

Pediatric and Adult Physicians Collaborating to Improve Cancer Survival Among Adolescents and Young Adults

Dr. Julie Wolfson is the founder of the Adolescent and Young Adult Oncology and Oncofertility Program at Children’s of Alabama.

It might surprise many people to learn that cancer survival rates have been showing continual improvement in children under 14 and mature adults, but not among the 15-to-39-year-old age group. The Adolescent and Young Adult (AYA) Oncology and Oncofertility Program at Children’s of Alabama is aiming to change that.

When Julie Wolfson, M.D., MSHS, pediatric oncologist at Children’s of Alabama and founder of the AYA Program, was learning about healthcare delivery a decade ago, she noticed the survival disparities for adolescents and young adults and began to investigate how it could be addressed. She researched registry data and found that across a host of different diagnoses, survival rates were better when patients treated at a National Cancer Institute-designated Comprehensive Cancer Center.

She began to focus her research on understanding why. And she became determined to ensure the highest level of care for adolescents and young adults at Children’s of Alabama. In 2018, using seed money from the Hyundai Hope on Wheels Foundation, Wolfson launched the AYA program, which provides clinical treatment support and an array of psychosocial support services vital for patients in the adolescent to young adult stage of life.

“These patients are in a really vulnerable time in their social, emotional and physical development,” Wolfson says. “While their friends are at college, they have to come home. They were independent, and suddenly, they’re back under their parents’ roof, or they’re working and they don’t have help. When their peers keep growing and doing normal young adult things, they’re stalled, and they don’t feel well.”

To address these issues, the AYA Program offers wraparound, multidisciplinary services. “An AYA social worker meets with every patient to figure out what they can help with that is AYA-specific. They also connect with their assigned hematology-oncology social worker and the Hope and Cope Program for any psychosocial support needs or provides resources outside the institution,” Wolfson explains.

Preserving Fertility for Young Adults with Cancer

Unfortunately, getting treatment for cancer can put patients at risk for not being able to have their own children later on. One of the things that Wolfson is trying to do through her partnership with the director of fertility preservation is increase the number of patients who undergo fertility preservation. “The director and I are very much partners in this, and she bends over backwards to get our kids in,” Wolfson said. The oncofertility program allows young patients to bank sperm or extract and preserve eggs. Soon, they will also be able to take advantage of a relatively new process that allows for cryopreservation of ovarian tissue that can be re-implanted later when they are ready to have children.

Wolfson also reports that survival improvement in the AYA group is correlated to clinical trial participation, so enrolling AYA patients into as many clinical trials as possible is a key focus area for the program. “Our treatment and our care of these patients only has a chance to get better if they’re treated in a research study,” Wolfson said. “When you look at pediatric oncology, well over 70% to 75% of the patients are enrolled in a clinical trial, but it’s very different the older patients get.” As the patients age, the proportion of those who are enrolled in clinical trials drops. For this reason, Wolfson tries to ensure the AYA group has access to appropriate trials.

Ultimately, everyone’s mission is to ensure that each patient gets the best treatment possible. “This age group can walk through either door—pediatric oncology or adult oncology,” Wolfson said. As a result, the pediatric oncology team works hand-in-hand with their counterparts on the adult oncology staff to make sure all patient care options are examined. This interdisciplinary approach is carried out at monthly tumor board meetings and with paired disease specialists—one from the pediatric side, one from the adult side—who bring a deeper understanding to leukemia, lymphoma, sarcoma, neuro-oncology, genitourinary and gynecological oncology and more. Radiologists, pathologists and other specialists also bring their expertise to bear.

Since AYA’s launch, Wolfson has received investments from the O’Neal Comprehensive Cancer Center and the Vestavia Hills High School service-learning project, RISE.

“It’s outstanding to have the support of the leadership from Children’s of Alabama, as well as University of Alabama at Birmingham and the O’Neal Comprehensive Cancer Center,” Wolfson said. “It’s pretty unique.”

January 16, 2023 by
Hematology and Oncology

Improving End-of-Life Care for Pediatric Cancer Patients

Dr. Emily Johnston is a pediatric oncologist at Children’s of Alabama.

Almost 3,000 children die from cancer each year in the United States. But in pediatrics, unlike adult care, there are no quality measures for end-of-life care. That’s changing, however, thanks to the pioneering work of Children’s of Alabama pediatric oncologist Emily Johnston, M.D., M.S.

“My goal is to establish quality measures for end-of-life care for children with cancer and then leverage those quality measures to reduce disparities in care,” Johnston said.

The mission comes from her time as a fellow, when she saw many deaths that did not go the way she believes patient families would have wanted. Systemic issues, like the inability to get a child into hospice given the lack of pediatric hospices, presented significant barriers.

In researching pediatric end-of-life issues, she found significant variation in care for underrepresented minorities. For instance, Hispanic children with cancer are more likely than non-Hispanic white children to die in the hospital and have medically intense end-of-life care. “When I would say this to people, they would tell me, ‘It’s okay, it’s what they want,’” Johnston said. But through dozens of interviews with bereaved parents, she found that was not the case.

During one series of interviews with 28 parents of 24 children who died of cancer, most parents said they preferred a home death and did not want their child dying in the restrictive environment of the intensive care unit (ICU). While they wanted their children to die peacefully, parents didn’t want to stop cancer treatment. They also told interviewers that they needed more education around end-of-life issues and more support around non-medical issues, such as financial challenges, so they could focus on their child. Parents also talked about a sense of abandonment after their child died.

Johnston and her colleagues then brought together a panel of nine experts in pediatric oncology, including representatives from nursing, social work and palliative care, to develop quality measures for end-of-life care for children with cancer, much like those available for adults. The 16 measures fit into four categories:

  • Avoiding medically intense end-of-life care
  • The location of death
  • Hospital policies/programs
  • Supportive care

For instance, one indicator measures the proportion of children who were intubated during the last 14 days of life, given that intubation usually increases suffering. Another measures the proportion of children who received palliative care or hospice support in the last month of life since both offer an additional layer of support for families, help alleviate suffering and facilitate the identification of the goals of the family and child.   

Hospital policies designed to improve the patient end-of-life experience included having pediatric palliative care services and a bereavement program available and eliminating visiting-hour restrictions, including age and number of visitors. Johnston and her colleagues are now working on validating and implementing the quality measures.

But, she said, “that research is a very big-picture; it’s not going to affect care tomorrow.” So, she partnered with University of Alabama at Birmingham palliative care physician Susan Buckingham, M.D., to improve access to palliative care for patients with high-risk cancers such as some brain and solid tumors.

Today, instead of starting palliative care near the end of a child’s life (and then only if the parent or physician requests it), families meet with Buckingham at diagnosis and have access to palliative care services throughout their child’s illness. Meanwhile, Buckingham attends oncology staff meetings and is now part of the multidisciplinary team treating those patients. She can spot unmet needs early in the process and work collaboratively with the nurses, social workers and other clinicians caring for the child and family. “We’ve done interviews with 12 families who had early palliative care about their experiences, and the feedback has been really positive,” Johnston said. As one family told her, “I didn’t really understand what palliative care did until we needed it, and I was so glad I already knew them by then.”

January 16, 2023 by
Hematology and Oncology, Inside Pediatrics

Hope and Cope Program Helps Families Navigate Medical Journeys

With the diagnosis and treatment of childhood cancer or serious blood disorders like sickle cell disease comes an emotional rollercoaster for the child and the family. From practical issues including getting to appointments, caring for siblings, and managing the costs of care to psychosocial issues such as anxiety, fear, grief, and even anger, there are needs beyond the medical support physicians and nurses can provide. That’s where Children’s of Alabama’s Hope and Cope Psychosocial and Education Program comes in. The program provides emotional support and services using a family-centered approach in which the family and healthcare providers work together to best meet the needs of the entire family. 

“It is becoming more and more important to provide these services to families dealing with cancer and serious blood disorders,” program director Avi Madan-Swain, PhD, said. “Even if we cure the disease medically, for some the cost of cure is high and results in neurocognitive difficulties as well as psychological difficulties, such as post-traumatic stress disorder.” 

To reduce stress during hospitalizations or clinic visits, the Hope and Cope Psychosocial and Education Program offers inpatient schooling (either group or bedside); art, music, and animal-assisted therapy; parental consult service; a weekly inpatient caregiver dinner support group; and expressive activities such as drumming, drama, and journaling. 

The program’s education/school liaisons help patients transition back to school, maintaining communication between the medical team, the child’s school, and the family and providing education to schools and families about special services the child may need. This includes classroom presentations to help classmates understand the child’s diagnosis and treatment. 

Once a child is diagnosed with cancer or a serious blood disorder, families complete a screening questionnaire to help the team identify immediate needs. The team shares the results with the family and initiates evidence-based interventions to address identified needs. The overall goal is to prevent crises by intervening early rather than being reactive. The team then meets weekly to discuss the psychosocial needs of newly diagnosed patients and those who have relapsed and need close monitoring. They also talk about any difficulties the patient/family may be experiencing in the inpatient unit or outpatient clinic.

“We’re building wellness and resiliency,” Madan-Swain said. “We’re not just looking at family risk factors, but also their strengths, and developing plans to support young people and their families to manage the challenges of their medical journey, make the most of their strengths, and ultimately celebrate life.”

A new initiative is strengthening psychosocial service delivery for parents of children undergoing bone marrow transplant, Madan-Swain said. “I’ve been working to systematically standardize parent assessment and education and providing psychosocial resources because of the intensity of the process. It’s like being in a pressure cooker.”      

One thing that sets Hope and Cope apart from similar initiatives at other children’s hospitals, according to Madan-Swain, is its bereavement component. Services begin when the disease is no longer treatable and continue for two years after a child’s death. All family members work with art and music therapists to create a “legacy piece,” such as a painting, sculpture, or music. For instance, the music therapist may record the child’s heartbeat and place it in a bear for the family. “We found that families who work on meaning-making activities cope much better after the loss of the child,“ Madan-Swain said. “This has really pushed us in the direction of making sure that we’re not waiting until the very end to create a legacy piece.”

Despite the success of the program, Madan-Swain is not resting. “I always want to move on to developing psychosocial care pathways based on family risk level and providing evidence-based interventions and expressive activities to improve adjustment and quality of life for both our oncology and hematology patients and their families,” she said. 

September 2, 2022 by