Our Inspiration

Our lives were drastically changed in November 2016 when we were told our 2 year old little girl had cancer.

Our Girl

Addy was a bright, joyful little girl with so much life to live. She enjoyed playing with her stuffed animals, making play food, and spending time with her older brother.

Addy could bring a smile to anyone’s face and loved giving gifts. It was common for her to take her drawings and paintings to Walmart and other stores to bestow upon strangers and store workers while her parents shopped.

Addy was diagnosed with DIPG on November 12, 2016. Addy had been experiencing balance and coordination issues for a couple of weeks leading up to a well child checkup with her pediatrician. Her doctor was concerned by what he saw during her checkup and scheduled an emergency MRI at Arkansas Children’s Hospital. The MRI revealed a mass in her brainstem which was later confirmed to be DIPG following a biopsy.

After her biopsy, Addy endured thirty-three doses of radiation. This is the standard treatment option for children diagnosed with DIPG. For some children radiation provides a measure of relief from symptoms, but for others it doesn’t provide any substantial relief at all. For Addy, radiation helped her to regain her ability to walk and have more range of expression in her face once again.

Addy finished her radiation treatments in January of 2017 and the positive effects of those treatments lasted until early July of that same year. In July of 2017 an MRI showed that Addy’s tumor was once again growing. She was now in progression.

Addy’s parents had spent the intervening months searching for a treatment option in case progression did eventually occur. They spoke with doctors in New York, and London, but the only door that opened for Addy’s next line of treatment was in Monterrey, Mexico. Appointments were made and flights were booked for Addy’s first treatment.

Addy’s family spent the next nine months traveling back and forth to Monterrey, Mexico a total of eleven times. These treatments were extremely beneficial for a time and helped Addy to live a more normal life. These treatments were made possible through the generous donations of hundreds of people who partnered with Addy and her family.

During an MRI in preparation for Addy’s eleventh treatment it was discovered that Addy had hydrocephalus, or fluid build up in her brain. Addy’s treatment was postponed and she was rushed to Arkansas Children’s Hospital for shunt placement surgery. After a successful surgery to place her shunt and drain the excess fluid from her brain the cause of Addy’s hydrocephalus was discovered by a second MRI. Addy’s DIPG tumor had metastasized and moved down her brain stem as well as into her spine. For a third time Addy’s family was told there was nothing to be done and that they should take her home to make memories.

Sadly, this time there truly were no more options for treatment. Though her parents searched and begged to be admitted into trials nothing came available. There was nothing left to be done except to try and enjoy what time was left with Addy.

Addy passed away on June 3rd, 2018 at 1:04 a.m. with her family by her bedside. The previous weeks had been spent living as much life as possible. Addy got to go to the beach, and spend time with extended family and friends. Addy brought joy and life wherever she went, and she is missed terribly by everyone who met her.

DIPG Information and Facts:

“Diffuse intrinsic pontine gliomas (DIPG) are highly aggressive and difficult to treat brain tumors found at the base of the brain. They are glial tumors, meaning they arise from the brain's glial tissue — tissue made up of cells that help support and protect the brain's neurons. These tumors are found in an area of the brainstem (the lowest, stem-like part of the brain) called the pons, which controls many of the body’s most vital functions such as breathing, blood pressure, and heart rate.

Diffuse intrinsic pontine gliomas account for 10 percent of all childhood central nervous system tumors. Approximately 300 children in the U.S. are diagnosed with DIPG each year. While DIPGs are usually diagnosed when children are between the ages of 5 and 9, they can occur at any age in childhood. These tumors occur in boys and girls equally and do not generally appear in adults.”

-Information courtesy of Dana-Farber Cancer Institute.