Living in “corona mode”: our battle with childhood leukemia

July 30, 2017 will be etched in our hearts and minds for the rest of our lives. It was the day that I brought my three-year-old son into the emergency department for unexplained foot pain. Never in a million years would I have imagined that he would be admitted that night to begin his fight against leukemia.

To this day, I can still feel the raw emotions after hearing the words that came out of the physician’s mouth: “Niko has blood cancer – it’s leukemia.”

At that moment, my world collapsed. All the plans, hopes and dreams I had for my little one and our family were shoved aside by something that literally came out of nowhere and imposed itself into our lives.

Those following days were agonizing. There was so much unknown. Both my husband and I were filled with worry, anxiety and anger, not knowing how to navigate the situation, but still wanting to be strong for our son. Although Niko was only three, he was extremely perceptive and wanted to know why he was in the hospital and why he was sick. Not only was his little body going through a zillion tests, pokes and procedures, but his mind was absorbing everything around him as well.

From day one my goal was to come out of this stronger as a family. This was not going to define us. We were going to take this and turn it into a beautiful story, one that Niko would be proud to tell one day.

It wasn’t easy. There were so many dark days and I cried A LOT. I had such a hard time trying to figure it all out. I was overwhelmed with how quickly life had changed, and how little control I had over what was happening to us. I’m a planner and before Niko’s diagnosis my husband and I had a plan for everything, and our lives were happily abiding by that plan. Little did I know everything was about to change.

Luckily, Niko was in remission after his first month of treatment. Although we still had a three-year fight ahead of us, we were able to go home. I was thankful for that every single day. I know that to many people on the outside, our situation seemed unbearable, but the truth is we were the lucky ones. I had met families that were much worse off than us. I was thankful that we had hope. I was grateful for each day without complication and most of all, I was grateful that we were together. I also witnessed such an outpouring of love from our family, friends and community that really made me realize just how blessed we were. That is how I made it through those first few months – trying my best to focus on the good while at the same time acknowledging my right to feel the bad days.

 

 

 

 

 

Being at home brought on its share of challenges. Dealing with the side effects of Niko’s medications were so hard to manage. His treatment protocol included chemotherapy, pain medication, antibiotics, and steroids. Steroid days were the hardest. He gained 15 pounds after his first month, he became tired, irritable and sometimes violent. On top of this, his immune system was severely compromised which meant limiting visitors, avoiding large crowds and being vigilant about everything that was around us. We sanitized the house and anyone who came to the door. It was hard watching the world around us move on and I would have moments of jealousy watching friends do regular things like go to the movies, amusement parks and have play dates. But we bunkered down and made our way through the toughest months.

As we made our way through Niko’s first year in treatment, I started to realize what we had gained through our experience. I now believe that no matter how awful the situation, there is always a glimpse of a silver lining. For us, it was realizing the value of time. I left a demanding job, a job that I was proud of, but that took me away from my family far too often. I had time with my son. Time to sleep in, time to play, time to talk and time to just be. Although those days were not always easy, I bonded with Niko in a way that I cannot explain. We gained new friendships through this journey and reconnected with those we lost touch with.

Most of all, we were able to re-prioritize our life. We now understood just how valuable our time was and vowed to not compromise that again.

At the end of the day, all we have is the memories we make, the connections we form and the way we make others feel. That is the lesson I have learned from all of this.

We are now at the finish line. Niko will be completing his treatment in October of this year. Our lives are not quite ‘normal’, but we are well on our way. As the world enters a new unknown territory with COVID-19, we are not worried about social distancing or being vigilant about where we go, or who we welcome into our home as this has been our life for the last 2.5 years. We are worried about people not taking this seriously and impacting those that are most vulnerable, my son included, but we will do as we’ve always done, we will build our safety net around him.

Going through our journey, I have come to terms with what is within my control and what is not. I make a conscious effort to not let fear guide me. I focus more on today and I try to make the best goddam use of that time because it is a gift.