October 4, 2006 – April 3, 2016
Diagnosed: October 17, 2014
Written by Sarah’s Parents, Kathy & Sam
– Hilarious – Imaginative – Snuggly –
Sarah Rosenbaum sang, danced, and laughed her way through preschool and kindergarten, enjoying art, reading, and recess. She had the confidence to try out for the school talent show at the end of first grade in May 2014 and agreed to sing “Do You Want to Build a Snowman?” from Disney’s Frozen because “Let it Go” was already taken. She performed her song to great applause, giving her a little bit of fame and ending the year on a high note.
Trouble started during the summer. By August, her behavior was erratic, and she was having trouble sleeping. We thought her clumsiness was due to lack of sleep, but when she toppled over while bending down to pick up a toy, we knew something worse was happening.
Just two weeks after Sarah’s 8th birthday in early October, an MRI showed a DIPG brain tumor, and she was given a terminal diagnosis with a year or less to live. The stress of that time was extreme. There were important decisions to make with unknowable outcomes. With very limited options for treatment, we had to decide what path would result in the best quality of life for Sarah and for us as a family.
Steroids and radiation changed Sarah physically and emotionally, creating more challenges for everyone. The three months following completion of radiation were a true test of courage and love. Chemotherapy with Avastin stabilized her symptoms for about nine months, but she needed a wheelchair to get around. Sarah was stable long enough to have wonderful experiences like attending two weeks of sleepaway camp and going on a trip to theme parks in Orlando through a connection with volunteer organizations.
Although Sarah had very limited mobility, nothing diminished her desire to laugh and have fun. She did her best to fill every moment with things and activities she enjoyed. She loved company and looked at her limitations in a positive way. She needed help to have fun, so everyone would help her. We met so many people willing to put their love into action to make Sarah’s life better. Their lives were made better, too.
Sarah had a great year with the love and support of her medical team, family, friends, and service organizations. She turned 9 in October 2015 with a week of celebrations. But the DIPG tumor had resumed its growth, impossible to overcome. Sarah died in April 2016, one day before her half birthday.
Now we are living her legacy, doing our best to sing, dance, and laugh our way through our grief. We are also putting our love into action by raising awareness and funds for DIPG research. We hope that you will join us by donating to chadtough.org using the secure donation button on this page.
We will leave you with a joke we learned just after Sarah was diagnosed: Why can’t you give Elsa (from Frozen) a balloon? Because she will let it go!
