September is Childhood Cancer Awareness Month
When Jordan noticed that her daughter, Hadlee, was developing a diaper rash at eight months old, she treated it the same way she had for her son when he was in diapers. Four months later, the rash hadn’t gone away, but Hadlee’s pediatrician wasn’t concerned. It still looked like an ordinary diaper rash.
Two months later, things worsened. “On the morning of July 21st last year, she woke up and the rash was all over, up her stomach and in the creases of her body. She couldn’t stay awake, and when she was awake, she wouldn’t stop crying,” said Jordan.
The rest of the family was recovering from a cold at the time, but Hadlee went on to develop a high fever and remained sleepy throughout the day. That evening, Jordan took her to the children’s hospital close to their home in New Mexico.
“The next two weeks were a whirlwind,” recalled Jordan. Hadlee was admitted to the hospital for extensive testing, including scans and x-rays of her bones as well as a skin biopsy. She was eventually given the diagnosis of Langerhans cell histiocytosis (LCH). LCH occurs when specialized immune cells, called histiocytes, increase in number and cause damage to bones and other tissues such as the liver, lungs, and skin.
“My husband asked a question [about LCH], and the doctor said that he didn’t have enough experience with this disease to answer any of our questions, but that we would meet with oncology later. That was our first indication that it may be cancer. That was when we knew what we were dealing with,” said Jordan.
One way the medical team evaluates the severity of LCH is by looking at the number of organ systems that are affected. The rash and skin biopsy indicated skin involvement. The skeletal imaging showed bone involvement. Additional testing showed that the bowel, liver, lymph nodes and bone marrow were all involved as well.
Even before the Brennans knew the extent of their daughter’s diagnosis, they knew they needed to find experts who specialized in pediatric cancer and hematology. Their initial internet search led them to Texas Children's Hospital in Houston, Texas.
“We started researching LCH and came upon Dr. Kenneth McClain. He’s the expert. My husband found his email and immediately reached out. Dr. McClain replied in 24 hours,” said Jordan.
Kenneth McClain, MD, PhD, is the Director of Texas Children’s Histiocytosis Program at Texas Children’s Cancer and Hematology Center, the largest histiocytosis treatment program in the world. The program sees 150 new patients each year and is actively involved in treating patients across five continents. Seeing so many patients with this very rare disorder has allowed Dr. McClain and his colleagues at Texas Children’s to pioneer clinical trials and research promising new treatment options for children and adults with histiocytosis.
Jordan, Kaelan and Hadlee flew to Texas for a consultation with Dr. McClain the following week. They hoped he could direct Hadlee’s care from a distance, but quickly changed their minds.
“[Dr. McClain] agreed that she had high-risk LCH and he gave us all the options. He was willing to do whatever he could do to help us,” said Jordan. “We had only been back in our hotel room for an hour after our appointment with Dr. McClain when he called with the results of her blood work. He told us that Hadlee needed a blood transfusion that night.”
As Hadlee was receiving her transfusion later that evening, Jordan and Kaelan realized that Texas Children’s was the best place for Hadlee to get the lifesaving treatment she needed.
“We decided that the care was so good—not just Dr. McClain—but everything else that we were provided at Texas Children’s for the day we were there. The environment was so comforting and reassuring. We decided that we should up and move and were at peace with that decision. The next day we found a house to rent and flew back to New Mexico. We packed that week and moved to Texas the next. That’s how our story began,” said Jordan.
The road back to good health over the past year has been difficult. Jordan has witnessed her daughter go through severe pain, episodes of bleeding and refusing to eat or drink. Although Hadlee was learning to walk when she was diagnosed at 14 months old, as the LCH progressed, she stopped trying to walk. She was only willing to sit or lie down due to the pain.
“The worst day of this was when Hadlee was bleeding profusely and screaming. When your child looks at you and she can’t talk, but it’s like she’s crying out for help...and as a parent there’s only so much I can do...I can’t make the disease go away, but the doctors and nurses and care team, that’s who can make this go away for us. Without Texas Children’s, I don’t think I would have my daughter today. I can’t put into words how much that means to me,” said Jordan.
Finding the right medication regimen for Hadlee was a challenge. Given the severity of her LCH, Dr. McClain and his team were able to provide a medication that made an almost immediate difference for Hadlee. She began to walk and interact more with her family. Although she is still receiving treatment, Hadlee’s LCH has improved considerably and she is able to enjoy her family and play like other children.
“She loves animals on a deep level. Any kind of animal, if she sees a dog, she wants to pet the dog. If she sees a cow, she wants to pet the cow,” said Jordan.
These days, Hadlee is running to keep up with her older brother and crawls only if she’s pretending to be a cat.
“We’re just grateful for everything Texas Children’s has done for us. Without Texas Children’s, I don’t know where we would be today,” said Jordan.
Learn more about Texas Children’s Cancer and Hematology Center.
