All any parent ever wants is for his or her child to be happy and healthy. When a little boy or girl is diagnosed with cancer, the news can leave parents feeling angry, sad or in shock. Making the situation even more difficult is the fact that much of the news – the diagnosis, the treatment options, the side effects – come as a barrage of information in a short span of time. Combined with the flood of emotions, it can be difficult to know what to do and where to start.
That was the experience of PinnacleCare member Julie Guillot when her 5-year-old son, Zach, was diagnosed with acute myeloid leukemia.
“The news of Zach’s diagnosis made me feel this crushing, sickening stress – and the fear and dread made me physically ill, even near collapse,” Julie said. “I am a person who researches everything. At first, I did not want to read anything about AML. I was too afraid and overwhelmed. But later, I did my research. Some people are paralyzed by the surprise of this kind of diagnosis and just let doctors take over. I think there is a huge shock in the beginning, then you spring into action a bit later.”
I was fortunate to have PinnacleCare at my side. They focused the best resources at a moment’s notice on our son’s case when we were in crisis. When we had given up hope, PinnacleCare took on the burden of collecting Zach’s medical records and pointing us toward innovative new therapies and clinical trials – ultimately getting his case reviewed by top researchers who accepted my son for treatment. Their work extended his life.”
Ultimately, her research taught her that families need someone to advocate on their behalf when a serious medical crisis arises, especially when it is your child in crisis.
“Parents need to know that the medical team is turning over every stone and not being constrained by geography and local resources. I appreciated having an advocate like PinnacleCare to keep the hope alive and fully investigate our options. It helped to know that my doctors were talking with their colleagues across the U.S., collaborating to find innovative therapies and trials for my son. I think that healthcare providers really need to be in tune with how hard a child and a family are willing to fight and how far they are willing to go, and work to tailor treatment to that patient and the family.
Julie continues to be a passionate supporter of T-cell therapy research that can lead to new treatments for AML. “Our family is dedicated to leaving a better path behind us for others,” she explains.