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Histiocytosis Care at Texas Children’s Hospital
It wasn’t long after Izzy celebrated her fourth birthday that her mother noticed strange-looking bruises on her legs. After a few trips to her pediatrician’s office, the nurse practitioner drew blood for testing; when she did, however, the bleeding would not stop.
“I immediately ran to the store to buy bandages because she kept dripping blood,” Izzy’s mom, Karen, recalled. “A few hours later, the pediatrician’s office called to say that Izzy had acute myeloid leukemia.”
Izzy, a sweet and playful girl from Louisiana, responded well to treatments for the first seven months. “She was doing okay throughout most of 2015,” Karen said. “Then in October, physicians at our hospital in Louisiana diagnosed her with hemophagocytic lymphohistiocytosis (HLH).”
Usually occurring in infants and young children, HLH is a rare disease in which immune cells begin to multiply and damage body tissues or organs.
“Once the physicians explained the new diagnosis, they recommended that Izzy be transferred to Texas Children’s Hospital and explained that she would receive the very best care from Dr. Kenneth McClain,” said Karen.
Dr. McClain is Director of the Histiocytosis Program at Texas Children’s Cancer and Hematology Center and Professor of Hematology/Oncology at Baylor College of Medicine. An award-winning, nationally-renowned expert in the field, Dr. McClain and his team see approximately 150 new patients with a variety of histiocytic diseases each year and follow over 1,000 active patients from five continents.
“Texas Children’s Histiocytosis Program is one of the largest programs of its kind in the world,” said Dr. McClain. “In addition to the team of specialists focused on histiocytosis, Texas Children’s has all of the subspecialists needed by patients like Izzy to receive the best possible care.”
“We learned that Dr. McClain has extensive expertise in abnormal activation of the immune system so we immediately had Izzy transferred to Texas Children’s,” Karen said. “The following day, the Kangaroo Crew® showed up, and we were on our way from New Orleans to Houston.”
Texas Children’s Kangaroo Crew is a pediatric intensive care transport service that has been making a life-changing difference for critically ill babies and children for more than 20 years. Specially-equipped ambulances deliver Kangaroo Crew patients from locations within 90 miles of Texas Children’s Hospital. Helicopters and a customized airplane transport patients, like Izzy, from farther away — all over the United States and Central America.
Caring for the whole child
Karen was particularly impressed by Texas Children’s Child Life staff, a team of specialists who provide developmental, educational and therapeutic interventions to support children and families as they adjust to the hospital experience. “During Izzy’s time in the hospital, we have had so many great experiences,” she said. “She really enjoyed participating in parades for the various holidays during her stay. The Child Life team was amazing, coming to her room with games, arts and craft supplies, and movies. During a recent stay because of heart issues, Izzy was able to talk to one of the Texans football players virtually!"
Karen also praised the Pawsitive Play Program, which uses animal-assisted therapy dogs, whom Izzy loved! “Pawsitive Play is one of our very special programs at Texas Children’s,” said Dr. Susan Blaney, Director of Texas Children’s Cancer and Hematology Center. “When these therapy dogs walk in the door, all of the anxiety in the room dissipates. They have a sixth sense and will snuggle with the patient and provide reassurance. It’s truly amazing. At Texas Children’s, we are committed to treating a child’s cancer and also attending to the psychosocial and emotional needs of the entire family.”
“I would absolutely recommend Texas Children’s to other families who have health concerns,” said Karen. “I encourage families to communicate with their doctors and nurses and not be afraid to ask them questions. Communication plays a big role in your child’s care, and the staff at Texas Children’s are great communicators.”
Of course, it hasn’t always been easy for Izzy and her family. As a result of her chemotherapy, Izzy developed cardiomyopathy and in May of 2022 she was placed on a heart transplant list. “Her heart has shown improvement, though,” said Karen. “She has gone from a status 2 to a 7 on the transplant list. She has a great cardiology team at Texas Children’s, and they work closely with Dr. McClain.” Status 7 means that Izzy is now listed as inactive and may no longer need a transplant.
“We have grown to adore Dr. McClain and respect him very much,” Karen continued. “Izzy enjoys updating him on her various adventures and telling him which animals she has managed to bring home. We appreciate Dr. McClain and the whole staff at Texas Children’s Hospital for the care they have given Izzy. When we needed it the most, they were a godsend.”
“We are so pleased with Izzy’s progress,” said Dr. McClain. Izzy is now 11 years old, and her future is bright. She enjoys fishing, playing sports and — in keeping with a passion inspired by the Child Life team at Texas Children’s — creating arts and crafts.
“We are very appreciative of Texas Children’s Hospital for the amazing care they have provided to Izzy,” said Karen. “We are grateful for all the staff, volunteers and donors who make it possible for patients not only to receive great quality care, but also have fun and enjoy being a child while being admitted to the hospital. There is no other hospital we would choose for Izzy.”