2020 Annual Report
Cook Children's Hematology and Oncology
When life gets complicated, you want one thing ... the best.
- Groundbreaking treatment options
- Innovative research
- Trail-blazing clinical trials
- Emotional support
As a parent, learning that your child has cancer or a blood disorder is one of life's most frightening moments. The top priority is finding the best care for your child. And ours is delivering it. That's a big promise, and we mean it.
Leukemia and Lymphoma Program
At Cook Children's our pediatric oncologists are actively involved in research to find, treat and ultimately bring an end to leukemia and lymphoma. In fact, we are constantly looking for the most innovative targeted therapies and clinical research trials, like Total Therapy XVII which launched in 2019, treating acute lymphoblastic leukemia (ALL) and acute lymphoblastic lymphoma (LLy).
Listen to two of our Physician Perspectives podcast to hear about our participation in the latest advanced research and treatments for newly diagnosed and relapsed for ALL and LLy and cellular immunotherapies.
Total Therapy XVII – Kenneth Heym, M.D.
CAR T-cell therapy - Holly Pacenta, M.D.
Neuro-Oncology Program
Cook Children's Neuro-Oncology Program combines the professional services of both oncology and neurosciences to give children and adolescents with central nervous system tumors access to an experienced team of caregivers. This team uses the most modern technology and clinical trial-based, evidentiary medicine to improve patients' health. While our extraordinary doctors, nurses and technology deliver groundbreaking treatments, we never forget that it all comes down to the one child that matters most: yours.
Listen to our Physician Perspectives podcasts to hear about our participation in advanced research and treatments in Neuro-Oncology.
Innovations in pediatric Neuro-Oncology research and treatments - Sibo Zhao, M.D.
Solid Tumor Program
Pediatric solid tumors account for approximately 40 percent of childhood cancers. As active members of Children's Oncology Group and other developmental therapeutics research consortiums including PEPCTN, Cook Children's oncologists collaborate with academic pediatric cancer centers and pharmaceutical entities to offer our patients the most promising evidence-based treatments available. For very rare tumors, treatment is individualized with the expertise of our whole team, in addition to consultation with additional experts throughout the country.
Listen to our Physician Perspectives podcasts to hear about our participation in advanced research and treatments in Targeted Therapeutics.
Targeted therapeutics for pediatric cancer - Kelly Vallance, M.D., MPH
Genetic Oncology Program
If you or a family member has ever battled cancer, you may wonder if there is an increased chance that your children or future children may be at risk also. Through the Kid Can Seq Grant with Texas Children’s we have provided genetic testing and counseling to 86 patients and families identifying cancer predisposition syndromes and helping patients, siblings and their parents start lifesaving surveillance. Our Genetics Oncology Comprehensive Multi-disciplinary clinic began in 2017 and continues to grow each year. To date due to this clinic's presence and awareness there have been 6 early cancer diagnoses, 4 pre-malignant lesions and 6 benign tumors that have been removed.
Listen to our Physician Perspectives podcasts to hear about our participation in advanced research and treatments in Genetic Oncology
CCPN Targeted Cancer Therapy - Kelly Vallance, M.D., MPH
Neuroblastoma Program
Treating neuroblastoma is complex and often requires the expertise of many different doctors, nurses and other health professionals. At Cook Children's our team is dedicated to utilizing clinical research trials, leading edge cellular immunotherapy, chemotherapy, radiation therapy and surgery to treat patients. Our physicians also work closely with NANT consortium, a group of 15 universities and childrens hospitals with strong research and treatment programs for neuroblastoma.Children diagnosed with neuroblastoma are usually younger than 5 years old, and most new cases happen in children younger than 2. About 700 new cases of neuroblastoma are diagnosed each year in the United States.
Adolescent and Young Adult Oncology Program (AYA)
Navigating the teen and early adult years is challenging enough; add cancer to the mix and suddenly the road feels long and lonely. AYA patients face these obstacles every day. We are constantly in awe of the amazing dignity, grace and humor they bring to their cancer journeys; much of which is spent right here at Cook Children's Medical Center. Because teens diagnosed with cancer have unique needs, Cook Children's Adolescent and Young Adult (AYA) Program provides patients with their own age-appropriate "home."
Adolescent and Young Adult Oncology Program
Bone Marrow and Stem Cell Transplant Program
Since 1986, our Bone Marrow and Stem Cell Transplant Program has performed more than 1,100 transplants in children with cancer, blood disorders or inherited diseases. That's what makes this program one of the most diverse and experienced pediatric transplant programs in the Southwest. Cook Children's provides life-saving stem cell transplants for a variety of diseases in patients. Outcomes are improved through our multi-disciplinary team approach and continuous quality improvement.
Watch video: Cook Children's Bone Marrow and Stem Cell Transplant Program
Bone Marrow and Stem Cell Transplant Program
Hematology Program
From routine checkups to innovative blood disorder treatments, everything we do is designed to make kids and their parents feel better. At Cook Children's, we treat children from infancy through young adulthood with a broad range of complex blood disorders and diseases. We understand the many types of blood disorders and diseases that affect kids, as well as the unique requirements for treating conditions in continuously developing bodies. We treat hematology conditions including von Willebrand disease, sickle cell, hemophilia, stroke and thrombosis, bone marrow failure syndrome, anemia, neutropenia and thrombocytopenia.
Listen to our Physician Perspectives podcasts to hear about our participation in advanced research and treatments in Hematology:
Hemophilia – Timothy McCavit, M.D.
Sickle Cell Disease – Clarissa Johnson, M.D.
Stroke and Thrombosis Program
People rarely think of children as being at risk for stroke, but strokes can happen to people of all ages. For children, strokes are often related to bleeding and clotting disorders. The stroke and thrombosis team at Cook Children's has an outstanding track record in helping patients to recover and to regain as much of their mental and motor skills as possible. This team has extensive knowledge of the types of disorders and issues that can cause stroke.
Life After Cancer Program (LACP)
Cook Children's Life After Cancer Program (LACP) is a comprehensive cancer survivor program dedicated to address the many late effects which children, adolescents and young adults may experience as a result of cancer treatment. The focus is to ensure that cancer survivors experience appropriate monitoring and follow-up, relevant to their original diagnosis and therapy. The ultimate goal is to help these patients become independent young adults, able to advocate for their own health care. The program makes referrals for survivorship follow-up to several specialties, including Cardiology, Endocrinology, Neuropsychology, Neurology, Surgery, Immunology and Psychiatry.
Each year, Cook Children's LACP hosts a family retreat at Camp O'Hana and provides survivorship care in our specialty clinics across Texas. The team is proud to collaborate with the Nursing Program at Texas Christian University and medical students at University of North Texas Health Science Center.
Clinical Research
As an active research facility, Cook Children's is at the forefront of treatments for kids from prenatal through early adulthood. This lets us work closely with each patient and their families to look at the options and advanced care – from genetics to stem cell transplants to targeted therapies – that otherwise might not be available to them.
As a key collaborator with the nation's leading pediatric research organizations, our team offers the best available treatments and contributes to the search for a cure. Through participation in elite research consortiums such as New Agents in Neuroblastoma Therapy (NANT), Therapeutic Advances in Childhood Leukemia (TACL) and Pediatric Early Phase Clinical Trials Network (PEPCTN) we are able to offer the most leading edge therapies and access to new agents via Developmental Therapeutics Program.
We have also collaborated with several recognized research institutions including St. Jude Children's Research Hospital®, Texas Children's Hospital and other high-performing academic institutions.
Not every cancer or blood disorder requires treatment through a current clinical trial. In fact, there are now many cases that we can treat and even cure with broad scope solutions, but those available treatments exist because of ongoing research. For the children who are diagnosed with cancers and blood disorders that are rare or challenging, research often provides the best chance of recovery. That's why we are involved in research and a continued pursuit of a cure for each and every child.
TOTAL ENROLLMENTS ON RESEARCH TRIALS IN 2020: 506
2020 OPEN TRIALS | ONCOLOGY STUDIES | 2020 ONCOLOGY ENROLLMENTS | HEMATOLOGY STUDIES | 2020 HEMATOLOGY ENROLLMENETS |
Treatment | 104 | 72 | 4 | 2 |
Registry / Biology | 21 | 287 | 8 | 51 |
Supportive | 7 | 13 | 0 | 0 |
Long-term follow-up | 2 | 0 | 0 | 0 |
Observational | 1 | 0 | 1 | 69 |
Genetic | 1 | 111 | 0 | 0 |
TOTALS | 136 | 483 | 13 | 122 |
Active clinical research and trials
Nursing
Cook Children's Medical Center is ranked in the top 1 percent of the nation's hospitals, receiving Magnet® designation for four consecutive terms, in nursing quality and excellence.
We are proud to celebrate the many achievements of our nurses and share their poster and podium presentations and publications.
Sit...Stay...Play - Dog Therapy Program
If you're wondering how therapy dogs help patients at Cook Children's you're in luck. I happen to be a patient here ... Why I think therapy dogs should be here: kids can miss their pets at home. They can be anxious about being the hospital, or they can be in pain, or just need some cheering up."
– Patient quote
Camps for Kids
COVID-19 created change in just about any and everything that was supposed to take place over the last five months. Summer camps have been no different. When the decision was made to cancel the summer season of Camps For Kids we jumped in to create a virtual camp experience for Cook Children's patients who need and look forward to their week at camp. The team took their expertise and adapted the best things about camp into programing that truly captured "the good" that camp brought its campers. Team members adapted to create content that campers would follow along and create at home. This took creativity and stretching out of everyone's comfort zone to create eight weeks of programing that has truly captured and engaged campers in a meaningful way as well as spread the "magic" of camp to new patient populations like patients with Cystic Fibrosis and other diagnosis that may traditionally not been able to attend because of isolation concerns. Around 280 campers engaged with the Happy Camper at Home program and participated through YouTube and Instagram in camp programing consistently for eight weeks this summer.
EXPERIENCE VIRTUAL CAMP
The week of virtual Camp Sanguinity included a camper box that contained supplies for activities that aligned with videos on the camp YouTube channel. Some of the videos were daily projects, such as karate, sign language, ukulele playing, and nature. As well, there were daily arts/crafts videos, nature activities, and music, to name a few of the offerings. We also included a family game with a video for instructions on how to build. We had videos for usual opening ceremony, as well as a welcome to camp video from counselors and board members.
Each camp with number of campers
Bereavement Program
The mission of our Bereavement Program is to honor and preserve a child's legacy. We aid in capturing special times and precious moments along with providing resources and ongoing support to assist patient families during this difficult journey. We want families to know that our care for patients and their families does not end when a child loses their life to cancer. Our program provides ongoing support during bereavement for a minimum of 12 months and longer if needed or desired. The program provides the following services:
- Grief educational materials for adults and children
- Telephone consultations
- Support Services
- Annual remembrance ceremony
- Referral information for individual and family grief counseling
PROJECTS:
- Staff made porcelain hearts for bereaved families.
- Created a Virtual Remembrance Ceremony.
- Conducted two legacy photography sessions.
January – December 2020
Cook Children's Bereavement Program
Family Advisory Council (FAC)
Patient and Family centered care is an approach to the planning, delivery and evaluation of health care that is grounded in the recognition that families play a vital role in the health and well-being of infants, children, and adolescents. At Cook Children's, each department has their own family advisory council (FAC). This mutually beneficial partnership has led to the creation of the following projects this past year:
PROJECTS:
- 6 parent members.
- 6 staff members (1 nurse manager, 1 inpatient nurse, 2 outpatient nurses, 1 social worker, and 1 provider).
- Milestone Bell Project completed (2 bells - 1 for inpatient and 1 for outpatient department).
- Collaborated with Artists in Residence to create an ongoing art piece for any patient who reaches a milestone and gets to ring the bell.
- "Things I Wish I Knew" for the outpatient H/O department created.
- Ongoing "end of treatment" books - "Oh The Places You'll Go".
- Parents virtually attended 2020 Stem Cell Transplant workshop to answer nurses' questions and give the parental perspectives of the transplant journey.
- Addition of social support and end of therapy questions/resources to outpatient clinic intake paperwork.
January - December 2020
Childhood Cancer Awareness Month
Though childhood cancer has a high survival rate, it receives less funding for research in comparison to adult cancers. So each year in September – Childhood Cancer Awareness Month – Cook Children's Hematology and Oncology Center team engages in a month-long effort called #erasekidcancer to honor patients, as well as those who care for them, and raise awareness about the need for more cancer research. For four consecutive years, our goal has been to engage the community to raise awareness about what Cook Children's is doing to help #erasekidcancer through research. Each year, the community comes together with generous gifts and social media engagement showing support for the amazing work doctors, nurses, researchers and staff members do to help patient families every day.
In celebration of Childhood Cancer Awareness Month, Cook Children's partnered with Melt Ice Creams to create "The Emma Supreme,” a special combination of mint and chocolate chunk brownie created by a Cook Children's patient named Emma."
Quality Improvement Program
Quality improvement is a significant focus for Cook Children's and the Hematology and Oncology Center. We have a robust quality improvement team that has grown by 2 additional RNs this year, and work collaboratively across several disciplines within the department. We maintain several quality improvement projects. A featured initiative for 2020 was the Exercise is Medicine program, which focused on promoting activity throughout the course of cancer treatment, early detection of neuropathy symptoms, and participation in resistance exercises with physical therapies while inpatient. Physical therapists, nurses, physicians, and nurse practitioners collaborated to ensure success. Several patients even completed ultra-marathon walking challenges. Additional quality improvement initiatives have been aimed at reduction of Central Line Associated Blood Stream Infections, promoting smooth discharges from the inpatient unit, and increasing the safety of the chemotherapy administration process. These initiatives ensure we continue improving and providing the very best care possible.
Thank you
Thank you for your interest in the Cook Children's Hematology and Oncology Center. If you would like information about upcoming conferences or new advancements in pediatric hematology and oncology research, we invite you to submit your email here and we will share updates with you.
If you wish to support Cook Children's Hematology and Oncology Center, your gift will make a difference in providing children access to the most advanced treatments and therapies. To find out how you can support patients and programs at Cook Children's, visit cookchildrenspromise.org or call 682-885-4105. Or, click the button below to make a donation now. Our sincere thanks for your support.