Gavin started showing symptoms early on in life. Years of seeing specialists and countless tests and imaging only led to more questions. Our local team applied to the Undiagnosed Disease Network, and Gavin was soon accepted. During our stay at Duke University Hospital, a genetic test revealed a tiny mutation on the NLRP3 gene that was causing uncontrolled systemic inflammation.
Brannon’s treatment involved so many hospital visits and chemotherapy sessions. It is so hard to watch your child go through cancer treatment. This terrible crisis was made worse when a few months into treatment Brannon faced a chemotherapy shortage that disrupted her care.
During treatment, he had lots of obstacles and hurdles that he had to overcome, including several drug shortages. Our son faced 4 drug shortages during his treatment. Each one created a lot of fear and uncertainty that he was not going to be able to get the medicine he needed.
As parents, we lost the ground under our feet. How can crucial medicines for treating children suffering from cancer not be available? How do hospitals specialized in treating kids not have alternatives or a mechanism to prevent these kinds of shortages? Why do patients, like us, basically depend on one source supplying this medicine?
My name is Aileen and I am married to my husband, Nick. We both work and live in the Boston area with our almost 3-year-old daughter. We are a very typical family and enjoy a love of the outdoors and traveling with our little girl. She loves spending time with her family and friends and her most beloved cat, Belle.
Gavin started showing symptoms early on in life. Years of seeing specialists and countless tests and imaging only led to more questions. Our local team applied to the Undiagnosed Disease Network, and Gavin was soon accepted. During our stay at Duke University Hospital, a genetic test revealed a tiny mutation on the NLRP3 gene that was causing uncontrolled systemic inflammation.
As parents, we lost the ground under our feet. How can crucial medicines for treating children suffering from cancer not be available? How do hospitals specialized in treating kids not have alternatives or a mechanism to prevent these kinds of shortages? Why do patients, like us, basically depend on one source supplying this medicine?
My name is Aileen and I am married to my husband, Nick. We both work and live in the Boston area with our almost 3-year-old daughter. We are a very typical family and enjoy a love of the outdoors and traveling with our little girl. She loves spending time with her family and friends and her most beloved cat, Belle.
Hello my name is Michael Thompson I’m from Ankeny, Iowa and I am 61 years old. My cancer story began with a recurring, minor throat irritation and earache. They would come and go over the course of several months. I did mention them to my family doctor a couple times, but there was no resolution. I eventually went to an ear, nose and throat doctor suspecting that I had some sort of inner ear infection, but instead I was diagnosed with cancer.
Our sweet, faithful Jasmine was diagnosed with T-Cell Lymphoma on January 28th, 2020. She was only seven years old. At diagnosis our pediatrician sent us to the children’s hospital to begin treatment. We learned all about how long and involved the process would be. As with all chemo, the treatment has its ups and downs, but our Jasmine pushed through.
My name is Tiffanie. I am a mom of two (Harper and Finn), wife and nurse. In January of 2020 myson, Finn, was diagnosed with Acute Lymphoblastic Leukemia. No amount of medical education,training or experience prepares you for the news that your child has cancer. It feels like an out ofbody experience. I felt helpless, heartbroken, and numb.
