Written by: Kathryn Gehring
When our daughter, Emma, was 7 months old, we had concerns about her development because she wasn’t using her left hand well, had eye tracking problems, and was experiencing poor weight gain. On January 2, 2013, our lives changed forever. The results of the MRI revealed that our Emma had a sizeable brain tumor at just 7 months old. It was devastating news for our family. In the days following her diagnosis, we struggled to understand why this was happening to our daughter and where to go next. There were many times that we weren’t sure how to go on or what to do next, but now two and half years later, we are Emma Strong and have lots to be thankful for.
In the past two and a half years, Emma has experienced more than we would have ever imagined. Shortly after her diagnosis, Team Jack shared their experiences with us and helped us to get in touch with Boston Children’s Hospital. On January 15th, 2013 Emma had her first surgery in Boston to remove 85% of her tumor. Emma’s surgeons shared with us that her tumor was not cancerous, but is fast growing; therefore it would have to be treated with chemotherapy. The good news is that if we can control the tumor’s growth until Emma is in her twenties there is a good chance that the tumor will stop growing and no longer cause problems. Emma also had surgery after this to place a shunt and a port, and then began her first chemotherapy regime to help slow the growth of the tumor.
During the first year and a half of her treatments, Emma was on three different chemotherapy regimens. Unfortunately they were unable to control the growth of the tumor. Emma lost all of the skills she had fought so hard to gain back and it was heartbreaking to watch the tumor take away so much. In August of 2014, Emma had to have surgery to place a new shunt and then two weeks later another tumor resection in Boston. Since then, Emma has been on two different chemotherapy regimens, and we are praying that the one we are on now will finally work.
Unfortunately because of the tumor and the surgeries, Emma’s left side is much weaker than her right side, which has made learning many skills such as crawling, using both hands to play, talking, and walking more difficult. Emma has done two stays at Madonna Rehabilitation Hospital in Lincoln and continues to go to therapy twice a week to work on strengthening her left side, using her left hand more, weight bearing, talking, and walking. Emma continues to fight every day to learn skills that other kids learn automatically.
Every day Emma shows us her strength and determination.
We, like so many people took for granted that our children would be healthy. Pediatric brain tumors don’t discriminate, and can happen to anyone. It is devastating to hear that your child has a brain tumor and have your lives turned upside down trying to help her fight for the life every child deserves. Before Emma was diagnosed, I knew there were kids with brain tumors, but thought it was rare.
I have come to realize that it is in fact not rare.
We have had the opportunity to meet many children who are also fighting this horrible disease. As we sit at chemotherapy I am amazed by the strength of the children and families who are fighting for a cure everyday. These are some of the bravest and strongest kids anyone will ever meet. They deserve to have the best treatments possible so that they can have long and healthy lives. Unfortunately, many of the treatments being used are over 20 years old. Only one of the five treatments Emma has done is newer than this. It is hard to understand why there has been so little progress in treatment options in 20 years. It is so important for us to continue to raise awareness and funds so that better and more effective treatments can be developed to help these kids, and so that they can just be kids.
Although these last two years have been an incredibly difficult journey, we have so much to be thankful for. We have been overwhelmed by people’s generosity and support, and have been blessed with amazing friends and family. The support and acts of kindness that people have given to us have helped to give us the strength we need to fight. We have lots to celebrate, too. Emma is an amazing little girl who amazes us with her strength everyday! She is now three years old and we feel so lucky to be where we are. Our Emma is such a happy girl, and takes all of this in stride and usually with a smile on her face. She inspires us with her strength and happy personality. Emma is a fighter. She is truly Emma Strong!
You can follow Emma’s story at www.emmastrong.com. Sign up for email notifications when new posts are up about Emma’s progress and you can also make donations or purchase t-shirts at that site.
Help support Brain Tumor Research and Emma at the Princess and Pirate 5K Walk/Run. July 18, 2015 – Yanney Heritage Park in Kearney, Nebraska. Come dressed as your favorite princess or pirate! Popular Disney characters will meet you at the finish line!
$25.00 – Ages 13 and older
$15.00 – Ages 5-12 Years
(Children 4 and under are free and do not need to register)
Registration fee includes a 5K T-Shirt.
Registration: 9:00 am
Start Time: 10:00 am