On July 12, 2012 our 13-year-old daughter Haylee was playing in the pool with her dad. He threw a ball at her and she missed it, laughing. When asked how she missed it, she replied, “I can’t see out of my left eye.” Stunned, but thinking something was wrong with her eye, we called the local eye doctor who ran some tests on her and then sent us to Cincinnati Children’s Hospital Medical Center the next day. Cincinnati Children’s is 104 miles from our home. We live in a rural area and the local hospital is not capable of handling such illnesses.
Through an MRI on July 13, they found a tumor in Haylee’s left orbital that had wrapped itself around her optic nerve and was growing along the back of her brain. This news was so hard to comprehend, especially because Haylee appeared healthy. She played softball and was a cheerleader at her Junior High – your typical everyday teen. My husband is a Sheriff Deputy in the state of Ohio. We have two other daughters, aged 16 and 18. Our 18-year-old was four weeks from leaving home to start college in Tennessee where she had gotten a scholarship to play softball. By all accounts we are your next door neighbors. The one small difference is that I, (Haylees mom) have Non-Hodgkins T-Cell Lymphoma. I have been fighting a battle with cancer for 9 years, 4 years longer than they had thought I would live.
On July 17, Haylee had surgery to try and remove the tumor. It was inoperable. We were blessed with an amazing team of doctors. We had decided that daily radiation treatments to her brain for 6 weeks would be our best bet. So for 2 months we drove 208 miles a day for 30 treatments, not to mention the extra days in the week where she would have Oncology team visits.
On Wednesdays and Thursdays, we started driving at about 3 pm. We drove more than 2 hours so Haylee could receive radiation, then to the clinic where we stayed for 6 hours, and then drove the 2 hours back home. We soon realized that we needed to be able to stay in a hotel for these appointments. Haylee was very nauseous and had headaches from the radiation to her brain. The last thing she wanted was to be in a car 5 hours a day.
We are so thankful to Alex’s Lemonade Stand Foundation’s for helping us with hotel stays. We are proud people, who work hard and have insurance and try to do everything the right way, but there is just no way to be prepared for the financial strain something like this can do to you. Although we had been through cancer treatment before (for me), when it’s your child you need every form of support you can get. We can’t express how much Alex's Lemonade Stand’s support through gas cards and hotel stays have done for us. There’s no time to plan or schedule something like this – it’s immediate. We had less than 18 hours to start this journey and without help from your organization, I don’t know what we would have done.
As of today, Feb 20, 2013, Haylee’s tumor is considered dead and we continue to have MRIs and oncology visits about every 6 to 8 weeks. In the attempt to get to the tumor, doctors had to cut some muscles resulting in nerve damage to her left eye. We are scheduled to start to repair this so she can get her vision back. As of now, she only has vision in her right eye and has no depth perception in the left.
Haylee has stayed in Junior High cheering for football and basketball. She has stayed on the honor roll and has been awarded the Scholar Athlete award twice this year. Haylee is a Student Leader in a program where they do community support activities. Our hope is that when Haylee starts high school in August 2013, she will have some of her vision back and that her tumor stays dormant. We have made huge progress, but there is still a mountain in front of us that we must climb.
Thank you to all the people that serve Alex's Lemonade Stand and all of the contributors. It’s a very dark time in your life when you have to see your child go through something like this, so when outside people send some relief it’s like a little bit of sunshine is shining through and it gives you strength to continue the battle.