Focusing on Quality of Life

At just 10 years old, Mandy Jackson has undergone chemotherapy treatment so many times that her mom stopped counting. In addition to cancer, Mandy is also on the autism spectrum and because of the cancer and the treatments, she only has one kidney and has problems with her lungs.

“Mandy has already had a very hard life for someone so young,” explains her mom Jessica Bierman. “When she started acting out and we didn’t know why, doctors at our local hospital told us that it was her autism. They also wanted to keep giving her chemo even though she was having so many side effects, so we knew we needed to find alternative treatments somewhere else.”

The Bierman’s path led them to Orlando Health Arnold Palmer Hospital for Children where a clinical trial that did not include high dose chemotherapy was being conducted. When Jessica and her husband explained that they did not want to put Mandy through more harsh treatments, the doctor in charge of the trial understood their wishes instead of trying to make them reconsider. He also put them in contact with Dr. Blaine Pitts who runs the hospital’s Palliative Care program. Dr. Pitts discovered that Mandy’s behavior issues were not caused by her autism, but instead because of the pain she was in.

Under the care of Dr. Pitts, the Biermans are now focusing on giving Mandy the best quality of life she can have. Mandy has a permanent pain pump surgically inserted in her stomach that gets refilled every three weeks, which has dramatically helped her adverse behavior.

“Dr. Pitts listened to our concerns,” said Jessica. “He listened when we told him that we did not think her behavior was due to her autism and he agreed that we needed to focus on her quality of life. Many people have a misconception that Palliative Care means end of life, when really the focus is on the quality of life. He and his team help coordinate all of Mandy’s care at the hospital.”

The Palliative Care team helps to conduct meetings with all of Mandy’s care givers to ensure they are all on the same page while keeping Mandy’s best interest in mind. While Mandy’s journey with illness may never be over, she now enjoys playing with her large collection of baby dolls, many of which she has gotten from her care team at the hospital and trying to do things that kids often take for granted.