SunriseWALKS - Long Island
June 10, 2018
Henry Kaufmann Campgrounds
75 Colonial Springs Road
Wheatley Heights, NY 11798
Austin was a healthy and active kid the first 4 years of his life. In early January of 2019, his hand and foot began to swell inexplicably. The doctors gave him an x-ray and saw nothing alarming. They ran blood tests and while the numbers were a little off, they weren’t so off the charts that it raised concern. They chalked it up to Austin having an allergic reaction to the penicillin he was taking.
Over the next few weeks, Austin’s right hand swelled up, then his left foot, followed by extreme pain in his shoulder and arm, then his right leg, then his left leg. Our little boy was in such severe and migrating pain, but all test results were inconclusive. When he began to wake up in the middle of the night screaming in excruciating pain, we took him to the emergency room with one objective: we would not leave until we got answers.
Based on the tests and Austin’s symptoms they narrowed it down to three possibilities: 1. A virus, 2. A rheumatic disease, or 3. Cancer. Our hearts dropped. Never in a million years did we suspect his illness would be this serious. After further results from blood and bone marrow tests and the first of many spinal taps, our doctors sat us down and informed us of Austin’s diagnosis: Acute Lymphoblastic Leukemia (ALL).
We pulled Austin out of soccer, karate, swimming, and even school; we cancelled our vacations. Austin’s treatment became our one and only priority. Austin would spend the next 3 weeks at Cohen Children’s Medical Center receiving chemotherapy through his surgically inserted Mediport, undergoing tests and beginning physical therapy as the leg pain and time he spent in a bed left him unable to walk or bear any weight on his feet. Our once active, athletic, healthy 4-year-old now had to be carried everywhere. The transition was hard on him. In the beginning, he didn’t want to leave his bed, he just wanted to be alone watching his iPad. The Sunrise on Wheels volunteers at Cohen’s did not give up, they were joyfully persistent. Every day they asked him to play. Every day he said “no, thank you.” Until, eventually, he said “ok.”
Soon the Sunrise on Wheels volunteers became the highlight of his day. He loved them and they loved him. Just like the Cohen’s Children’s staff, we trusted the Sunrise on Wheels volunteers. So, when they told us about Sunrise Day Camp, we were intrigued, but hesitant. Summer was going to be one of the most intense phases of Austin’s treatment. How could he go to camp if he couldn’t even go to school? But the Sunrise camp staff were aware of his medical condition and needs - they thought of everything. We decided to give it a try.
Austin came home after his first day singing the camp song and most importantly, he came home happy. At a time in his life where he could do virtually nothing, he could go to camp. And not just any camp. A really special camp where he could connect with kids going through exactly what he was going through. He’d come home and say, “Mommy, So-and-so lost his hair just like me!” What an amazing gift. And just like the Sunrise on Wheels volunteers, the Sunrise Day Camp staff became like family to us, providing Austin with the loving environment he needed. When we were at our lowest, Sunrise was a positive beacon in our lives.
January 2020 will be one year since Austin’s diagnosis. It has been the worst and most challenging year of our lives, but we have kept a positive attitude and outlook on life because of our amazing support system. From our friends and family who helped us every step of the way with anything we needed (whether it was bringing food to the hospital or helping our 7-year-old daughter, Jordana, keep a normalized schedule); to our trusted doctors, nurses & support staff at Cohen Children’s Medical Center who have gone above and beyond their call of duty in assuring Austin is in the best situation to beat this disease; to our new family at Sunrise, we were overwhelmed with the amount of love bestowed upon us. Austin is currently in maintenance, back to school and thankfully doing well and we are so excited to be the Ambassadors of the 2020 SunriseWALKS!
- Neal and Tracee Cohen