A Mother’s Experience in Isolation: Cheryl Shares Her Story
By: Cheryl Colleluori
While many of you are experiencing isolation for the very first time, it is the “norm” for someone undergoing cancer treatment.
This was our “norm” as my Nick was undergoing a stem cell transplant. As a promise made to Nick that he would never be alone, his hospital room became our home for 34 days.
While it was challenging, I would take those days back in a heartbeat because it would mean that my son would still be with us.
My focus was my son’s health and I would do anything in my power to make him better and to make him smile but more importantly to make things as normal as possible.
34 days seems like an eternity but we found ways to get through it. Our life was a journal—what meds was he taking, how often, what were the side effects? What were his blood counts? Would he need blood or platelets today? Temperature checks many times a day because spiking a fever could mean infection that, without an immune system, Nick might not survive. Mouth sores, loss of appetite, weight loss, severe nausea and fatigue. What was his nurse’s name? What day of the week is it? We walked the floors, we played games, we talked in depth (I learned some things that I really didn’t want to know – lol), we listened to music, we watched the Hofstra Lacrosse games on DVD, he opened hundreds of cards—most importantly, we loved! I called Nick my Mr. Gadget. He loved to play video games, and the BlackBerry had just come out. Nick of course has one, and he used it to communicate with his teammates, friends and family. He knew about the darn thing before we did!
Nick showed us what toughness and confidence looked like as he smiled through it all. He stared cancer in the eye and said “let’s go.”
During this time, I was wrapping up my college degree. I wanted to drop out, but Nick wouldn’t hear of it. After all, it had taken me 14 years to get to this point as I juggled motherhood of four, working full-time and being a full-time college student. I didn’t want to go to my graduation. It didn’t feel important in comparison. Nick insisted, and so I went. My name was called, and as I walked up to get my diploma and reached for the President’s hand to shake, I received a text message, it was Nick. “Mom, I’m so proud of you,” he wrote. With tears streaming down my face I shook her hand, ran off the stage and headed straight to the hospital, still in my cap and gown. I wanted to share this moment with my son. I raced to the hospital and walked into Nick’s room to find him having an allergic reaction and experienced temporary paralysis. I screamed like a lunatic. It was the only day that I had left him in 14 months.
We never focused on the negative, only the positive and getting back to school and lacrosse was Nick’s primary goal. If it was his goal, it was mine too!
I took a leave of absence from work, there was really no choice, I wasn’t leaving my son. It was an immense financial strain, very difficult, and we sold just about everything we owned except our home to stay afloat. I was not eligible for short-term disability because it was my son who was ill, not me. One day I hope that changes as it took almost five years after Nick passed away for us to recover financially from his cancer. My husband took FMLA (twice actually) which means that he could be out 12 weeks without income. Luckily, his job was secure.
Was I afraid? I have never been so afraid! Fear of the unknown, fear for our future, fear for our family. Our love and Nick’s character got this mother through the ordeal. I slept in a chair that converted into a pull out bed. I didn’t go home for 34 days. I was at his beckon call, which I’m sure annoyed him but he never led on. We lived out of a suitcase. I couldn’t even tell you what went on with my other children and for that, I am sorry. I had no idea what was going on outside of Nick’s hospital room. Looking back, I remember thinking how could things be happening in the world when our world was confined to Nick’s room. People were getting married, games were being played, life was moving; it all seemed so unfair.
It was during the most difficult times of our lives that the HEADstrong Foundation was born. During one of his procedures, Nick asked for a piece of paper—I didn’t have paper but gave him a napkin. He was doodling waiting to be called in, he turned the napkin around and said “here’s the logo.” My husband and I said, “What logo?”
He replied, “For the foundation I’m starting. I want to use my experience to improve the patient experience and I want to make a difference in the lives of the community that I now belong to.”
What was he talking about? The rest is history.
I’ve always said I could live in a box, and make that box my home if I could have Nick back. Since that is not a possibility, I have channeled my days since his passing in pursuing an underserved need of providing . . . Nick’s last gift . . . the HEADstrong Foundation.
As his advocate and caregiver, I was Nick’s voice and now I’m a voice for those following in his footsteps.
For those that are currently undergoing treatment, WE ARE IN THIS TOGETHER! My former boss would remind me that we will all be in a different space both physically and mentally in 3 hours, 3 days, 3 weeks, and 3 years from now.
Keep your HEAD up and Be HEADstrong!