Our son, Elijah, was diagnosed with Stage IV Neuroblastoma in August of 2005. He was four years old. He successfully completed treatment at our local children's hospital in October of 2006. Not quite a year after enduring months of high dose chemotherapy, a stem cell transplant and radiation, Elijah's horrible disease returned. We tried conventional treatment that was available to us here, but soon realized that we would have to go elsewhere to get the help he needed. After much research, prayer and careful consideration, the decision was made to travel 1200 miles from our home in Arkansas to Children's Hospital of Philadelphia.
Traveling great distances to seek out more advanced treatment options is sadly not uncommon for families like ours who have a child battling a form of childhood cancer that is considered to be "rare" and for which treatment options are limited. The sad reality is that the challenges that come with traveling so far often make it an impossibility for many families. The expenses are incredibly overwhelming - especially when most families like ours are already in great financial distress.
Little did we know when Elijah hosted his first lemonade stand six years ago that Alex's Lemonade Stand Foundation would later become one of our biggest supporters in our quest to save our son. On our third trip to Philadelphia in less than three months, we were unable to fly because of Elijah's treatment and condition. A 1200 mile road trip would be necessary to get our son to treatment. Alex's Lemonade Stand Foundation stepped in to lend a much needed hand. They provided us with gas cards to help pay for the biggest expense of the trip. They sat down and carefully calculated just how much gas it would take us to get from here to there using the specific route we were traveling, the current cost of gas, and the gas mileage that our car was getting. They made sure that we had exactly what we would need to get there and to get back home. On another trip, Elijah and I were stranded overnight in Chicago because of weather. I had $13 in my wallet. Our social worker in Philadelphia made a quick call to Alex's Lemonade Stand Foundation to see if they could help. Within minutes they reserved a hotel room that not only had a free airport shuttle, but also had complimentary breakfast. It's not just the fact that they sent us some gas cards and made a hotel reservation. We have had to lean on them many times for travel assistance and each time they have carefully thought of the details that would make our situation easier.
We have been traveling back and forth from Little Rock to Philadelphia for over 5 years now. Throughout the course of those five years we have had major triumphs as well as major setbacks with Elijah's treatment. We have had periods of time where we have had to come every six weeks and periods where we get to stay home for a three-month stretch. Our stays in Philadelphia are anywhere from three days to three months, depending on what’s going on with Elijah’s disease and the treatment he is on. The good news is that traveling so far for our son to receive the treatment he needs has worked. Our son is with us today and continues to thrive all while still fighting a horrible disease. We never would have been able to continue this fight for so long if it hadn't been for having Alex's Lemonade Stand Foundation in our corner. They have become like family to us.
To date we have hosted several lemonade stands to support Alex's Lemonade Stand Foundation and plan to continue hosting one every summer. We love to share Alex’s story with others and encourage those who would like to help to consider hosting their own lemonade stand.
The unfortunate fact is that kids are still being diagnosed. Kids are still suffering relapses and relapse treatment options are still limited. I know that we would go to the ends of the world to save our son. I also know that we couldn't get there without help. We need Alex's Lemonade Stand Foundation to continue their mission not only in research, but also in helping families get to the treatment their kids need.
Thanks so much,
The Talley Family
Britt, Dawn, Hannah and Elijah
Updated: December 2013