My name is Darlene Rios and I am the mother of one spunky, brave, inspiring little girl named Kaylee. Many of you may recognize this little girl from the posts that Adipsy has made. I would like to take a moment to tell you a little bit about Kaylee and her fight against cancer and the support Adipsy has given us.
Her journey started six and half years ago when we heard those dreadful words “your child has cancer” – stage 4 high risk neuroblastoma.
That night was one of the longest nights of my life. Hearing the words “your child has cancer” really takes the wind right out of you. I’ve never felt so many emotions in 24 hours than I did that night. I remember my first thought being, my baby is going to die.
For hours I couldn’t stop crying. Then I remember thinking how that wasn’t fair to think like that. It wasn’t fair to Kaylee; not to give her a chance to fight the battle or to show the world how strong and inspiring she is. It wasn’t fair to immediately determine her fate for her. How could I determine that? At that moment I could only look at Kaylee and see the optimism and the innocence of a two-year-old girl.
Kaylee completed her initial treatment at Cook Children’s Hospital in Ft. Worth, TX. She battled through it like a warrior. She endured over a year of surgeries, chemotherapy, radiation, and a stem cell transplant. Kaylee battled so bravely to achieve remission. Kaylee was cancer free for over a year and she LIVED life to the fullest. During that time our family relocated to South Mills, NC for a fresh start. And life without cancer! At least momentarily…
In August of 2013, we heard those dreadful words again. Kaylee had relapsed – the cancer was back. We thought to ourselves how are we going to do this again? We were immediately admitted to CHKD that day to start treatment. When neuroblstoma returns, it comes back different. It has the ability to mutate, evolve, and become smarter and more aggressive each time. There was no time to waste. Kaylee began chemotherapy again.
Over the next year and a half, Kaylee endured more toxic treatments. She was so sick at times, but she never let it get her down. She continued to go to school, play sports and live life. She refused to let cancer define her.
During April of 2015, Kaylee was continuing her treatment at Memorial Sloan Kettering Cancer Center in NYC. She was participating in a clinical trial that would help keep her cancer from returning. Unfortunately that treatment proved to be unsuccessful. Kaylee relapsed for the 3rd time.
At this point, my husband, Ryan and I were more scared than we were at diagnosis. We knew firsthand what treatment looked like and how hard it was going to be. Telling Kaylee that her cancer had returned was certainly going to be one of the most difficult things that we were going to have to do. We couldn’t help but wonder how was Kaylee going to react when we told her? She was old enough to understand the effects of treatment. We sat Kaylee and her sister, Rylee, down and began to tell them the news that she had relapsed again. Ryan and I expected this conversation to be heavy. However that wasn’t the case.
After telling the girls the news, the only question Kaylee had was, “Am I going to lose my hair again? I don’t want it to look weird when it starts to fall out. Dad, can you just shave it?” And that was the end of the conversation. Off her and Rylee went to play. You see, Kaylee knew what her future was…more toxic treatment. But the only thing she was concerned about was who she was going to beat in a game of ping-pong down stairs in the playroom. Again Kaylee did not let cancer define her.
Over the next year our family was torn apart. Kaylee and I practically lived in NY for treatment while Ryan and Rylee stayed in North Carolina to work and go to school. We needed something to bring us together and bring JOY back into our lives. That’s when we met our friends at Adipsy.
They had organized a Christmas Party at Busch Gardens for all Pediatric Cancer Families to attend and we were invited. We spent the afternoon drinking hot coco, visiting Santa Clause, and walking around Busch Gardens riding all the rides. This day was exactly what we needed. Time to be together, time to watch our kids just be kids, and not be stuck in the hospital. It was a perfect day! We were rejuvenated and ready to take on what ever came next.
However, on March 9, 2016, Kaylee relapsed again. She would have to endure one of the most difficult treatments yet – MIGB therapy. She would be radioactive for days. Kaylee would be locked in a lead lined room for 3-5 days all by herself until her radiation levels were safe to be around people. This was going to be mentally and physically difficult for Kaylee. How is a 7-year-old kid supposed to endure all of that without her mom? What is she going to do for 3-5 days in a room by herself?
In the end, Kaylee did it. She played with legos, watched TV and did a lot of arts and crafts. She was amazing! She busted out of led lined room and was ready to take on the next adventure. Kaylee remained cancer free for 3 months and then that monster was back again for the fourth time.
July of 2016, Kaylee relapsed and this time it was everywhere in her bones and bone marrow. Since this last relapse, Kaylee has endured more chemotherapy. She receives chemotherapy every 3 weeks for 4 days. This took a toll on her and our family. We needed a break from our day-to-day life living with cancer. The past year had been a tough one.
Think about your life on a daily basis. Now throw in the anxiety of cancer, medication, hospital visits, clinic visits, scans, side effects and those costly medical bills. All of that plus the day-to-day living had caught up to us. We needed a break! That’s when our friends at Adipsy contacted us and offered us a respite mountain getaway.
Adipsy took the expense and stress way by paying and planning the entire trip. All we had to do was show up. We were so excited! This trip couldn’t have come at a better time. Our two children had a blast and so did Ryan and I. The word cancer didn’t come up once while on that trip.
From sun up to sun down we were busy making memories as a family. We went rock climbing, tubing down a mountain, swimming, shot bow and arrows and many other things. We were happy. We were LIVING life together! We are so thankful for Adipsy. They gave us a gift – a gift of a family vacation full of life long precious memories. Thank you.
So here we are six and a half years later and Kaylee still battles on… inspiring me and everyone around who crosses her path. I’m beyond grateful for all of the love and support from friends, family, communities, fellow cancer families, and the foundations such as Adipsy.