Our Story
On October 7th Emmy was taken to the ER with symptoms of persistent vomiting, behavior changes, a wide gait and balance issues. She was quickly taken to get a head CT where we saw the scan flash on the screen. Joe and I looked at each other knowing something was wrong. The doctor came in soon after and told us that Emmy had a large brain tumor with hydrocephalus and would need immediate brain surgery to insert an external ventricular drain (EVD). It was in the following days that we learned Emmy didn’t just have a brain tumor, she had three eye tumors as well. This meant she had trilateral retinoblastoma, a very rare form of cancer. All childhood cancer is “rare”, but this form typically only affects around 3 children per year. The odds were not on our side, but Emmy gave us an incredibly strong fight anyway. We spent the next several months mostly in the hospital for treatment or sickness.
On April 17th Emmy’s MRI showed multiple new spots and we were given an estimate of 2-3 months left with her. We spent the next month heavily enjoying our time with her and hoping we would get more than the estimated time left. We visited the hopital on May 12th with concerns of a bowel blockage and instead found out the issues were due to disease progression. Soon after that incredibly difficult news Emmy started seizing. This is the first time she had seized and we were so thankful to be at the hospital. She seized again just minutes after. They called the on call PICU attending and she let us know that she was very concerned about Emmy making it through the night and we needed to get an immediate head CT to see what is causing this. The head CT showed new growth and hydrocephalus. She let us know that this was the end. We were lucky to be surrounded by friends and family for the next day and a half. Emmy finished her fight on May 15th surrounded by her loved ones.
RARE is a term we no longer accept.
1 in 285 children will be diagnosed with cancer before age 20.
Let’s sit with that for just a moment.
The average number of children in a public elementary school is around 450.
1 in 285 doesn’t seem that rare after all.
A cancer diagnosis is forever life changing.
Your life is now “before” and “after.”
1 in 5 children will not survive their diagnosis.
Those that survive?
2 of 3 survivors suffer life long health impacts from their diagnosis and/or treatment.
Not only is there a greater risk of life long health impacts, depending on genetic mutations and treatment types they have a
greater risk of developing a secondary cancer.
Only 4% of the government's research budget goes toward pediatric cancer.
Most treatments were developed far before 2000.
Our kids deserve better.
The first step is awareness.
Awareness that childhood cancer is actually real and not that rare is important. Early diagnosis can lead to better outcomes.
Early diagnosis means less harsh treatment.
Less harsh treatment can lead to better quality of life.
Awareness also brings more money for research, more public attention and more advocacy for our children.
Adults have a strong voice, children don’t. We are their lifeline to a better future.