In the summer of 2014, our worlds were rocked. We were going about our business as most families do in the summertime … trips to the pool, play dates with friends, popsicles and lemonade. Our son, Rocco, had been struggling with very strange skin rashes that popped up out of nowhere. We didn’t understand what was going on and we went to a wide variety of doctors to try to understand the cause behind them. Nothing was ever conclusive, and it grew very frustrating for us. One evening, we noticed that his belly looked distended. Not the dinner-was-really-yummy kind of distended, but strange and certainly different from the day prior. It was too late in the day to take him to his pediatrician, so we waited until the next morning to take him in. After doing some bloodwork, our pediatrician immediately sent us to the Children’s hospital in Atlanta. After a very long and stressful ER visit, we learned that our precious 3 year-old son had a cancerous tumor (the size of a softball) in his abdomen.
Shocked. That is how we felt. With numb bodies we learned over the next few days the gravity of his condition. He had a rapidly growing tumor attached to his kidney which in turn was causing his kidneys to shut down … suffice to say, and our little boy was sick. Very sick. We wanted to believe that this wasn’t happening to us – Not to our precious little boy. Unfortunately, that was not the case. Our son had cancer and we had to face it head on whether we wanted to or not. It was a beast that wasn’t going away on its own, and we needed to be strong for our family to get through this. We have never been so thankful for a strong faith, and incredibly supportive family and friends.
The 30,000 foot version of his story is this – He was initially diagnosed with a Wilms tumor, a common cancer found on the kidneys of young children. From his early scans the doctors indicated it had to beWilms tumor, which made perfect sense because of its size and location on his kidney.Within one day of diagnosis, they began a chemotherapy regimen (designed for Wilms). However, the very next day his potassium rose to very dangerous levels, and with kidneys that were barely functioning, he was moved into the ICU. As you can imagine, this was quite possibly the scariest and most uncertain few days a parent can experience.
After a few grueling days in the ICU, he turned the corner and was discharged back to the oncology ward to continue his treatment. Cancer patients are typically sick from the side effects of treatments, but he was unusually sick, landing him in and out of the hospital – often for long stays.
Over a six week period, the treatment shrunk the tumor enough for the doctors to perform a partial nephrectomy, a fancy name for a surgery to remove part of his kidney. After the surgery, we received a call from our oncologist that we will never forget. She was very perplexed, and shared with us, that he had been misdiagnosed. He didn’t have a Wilms tumor … instead he had Burkitts’ lymphoma, a non-Hodgkin lymphoma that typically presents in the lymphatic system. In fact, she told us that his was the first recorded case ever where the Burkitts’ presented only on the kidney. We were shocked and dismayed to say the least. The good news was that the prognosis was actually better, the bad news was that Burkitt’s Lymphoma is generally considered the most aggressive form of cancer – and therefore requires a more aggressive treatment plan.
Burkitt’s treatment is kind of a “throw the kitchen sink at it” approach. It’s one of the fastest growing cancers in the body, which is why one day his stomach wasn’t distended, and the next day it was. It can literally double in size every 18 hours. This is why chemotherapy is very effective against Burkitts’ – essentially quickly dividing cells typically respond to chemotherapy very successfully.
After dozens of spinal taps, multiple IV chemotherapies, mouth sores, hair loss, weight loss and lots of lengthy stays at the hospital, he overcame this beast. He fought like a warrior and never gave up. His perseverance to push through the unbearable was inspiring. We are extremely proud of him, and thankful to God for his health and strength today.
Unfortunately, some parents cannot say the same. Just since we have completed treatment, many children we came to know in the oncology ward have earned their angel wings and passed on. Others are suffering life-long side effects from the treatment they were given. See, there are 43 children diagnosed with cancer each day. It isn’t as uncommon as you think. And, it’s awful, it’s unbearable, and I wish I could make it all go away. Unfortunately, I do not have that power. However, we do have the ability to help in the fight against childhood cancer – To help fund research for the development of new drugs that have fewer side effects – To help doctors create tailored treatments for children because none of them are the same -To love and support families who are in the thick of extremely difficult and trying times. This is why we started RocStar Kids, a non-profit that gives all of its proceeds to organizations that do just that. Unfortunately, we know first-hand how difficult this journey can be.
All proceeds from our online store will go directly towards the fight against childhood cancer. We are very passionate about this cause and desire nothing more than to make a dent in the fight, knowing how desperately it is needed. Thank you for joining with us.