30 DAYS/30 STORIES® 2023
On May 15, 2001, my second child was born. We had a perfectly imperfect week of adjusting to baby #2, but it was exactly the imperfection I had always dreamed of. I was loving life. Not the sleep deprivation, but life. When Aidan was a week old, Cole (who had just turned 3) started showing some viral symptoms...fever, fatigue, vomiting, crankiness. He was no better by day 3 of the illness, so I dragged him along to Aidan's 10-day checkup. And with that visit to the pediatrician, it all fell apart...that perfectly imperfect life.
We ended up at Yale New Haven Children’s Hospital…with a diagnosis of Acute Lymphoblastic Leukemia. We went home several weeks later. We went home with chemo meds, anti-nausea meds, prophylactic antibiotics, meds to break up tumors, steroids, and a 3 year-old with some “strange” thing called a port. We came home with a new life. One we didn't ask for, one we never saw coming, one that would either break us or make us better and stronger. Maybe a little of both.
It was a long two and a half years of treatment. Two and a half years (over 900 days) of pumping poison into my child in the hopes he'd be cured. Read that again, please…two and a half years of PUMPING POISON INTO MY CHILD. (And frequently holding that child down while others did it…which may or may not have been worse than all the times I had to deliver the poison myself.) Two and a half years of countless spinal taps to let the doctors push poison into his cerebrospinal fluid to keep the cancer from spreading to his brain and spine, all the while knowing he would likely suffer learning disabilities due to it.
Two and a half years (21,600 hours) filled with bottles and bottles and bottles of pills that my 3 year-old would learn to line up by the dozen on his tongue and swallow. And don't forget the many bone marrow aspirations to check if the cancer was coming back. That's right...to see if the poison had stopped working and the evil cancer was back inside my child. Cole endured getting the chicken pox from an unvaccinated boy at preschool and being hospitalized on IV antivirals…so the chicken pox wouldn't kill him. Kill him. He endured "roid rage" from the massive doses of steroids...extreme fits of anger, superhuman strength, and binge eating. (The steroids were bad. We ALL had to endure them.) Oh, and minor things like weekly finger sticks, missing preschool, canceled playdates, oceans full of tears, and daily nausea. We lost friends who just didn't know what to say or do. We realized who really cared and who really didn't (sadly, there were more of the latter).
We struggled to maintain some normalcy. We did the best we could to continue living in the face of our child dying. And then at the end of the long two and half years (1,296,000 minutes...and some of those minutes were REALLY long), treatment was over. Sounds like a happy ending. But it never REALLY ends when your child has cancer. Because...your child had cancer. And you never really believe it's all gone OR that it will never come back. In some very real and tangible ways, it is ALWAYS with you.
And yet, we DO have a happy ending. An ending not everyone is blessed with in this world of pediatric cancer. Through our personal experience and through my work, I have been blessed to meet so many parents whose children I will never know. Somehow, though, I "know" them through the beautiful way in which their spirit is kept alive. In (too many) other cases, I have had the profound honor and blessing of getting to know and love warriors before they passed away. And man, I really do love them all. I keep their photos on my refrigerator, their names on my tongue, and their spirits close to my heart.
Today, my warrior is 25 years-old and a high school biology teacher. A strong, healthy, bearded man. My man-child, I often call him. A man-child who is getting married in April of 2024. He doesn't remember much about having cancer...and for that I am forever thankful. I, on the other hand, will never forget. Not one tiny little detail. It is my sincere hope and passionate commitment to put those memories of our experience to good use, to find ways to help other families in this battle...to be the reassuring lighthouse on the shore of a turbulent and threatening ocean.
"The scars you share become lighthouses for other people who are headed to the same rocks you once hit."
Written by Michelle Zenie Rounds, Cole’s Mom and Executive Director of PCFLV
Please consider helping children with cancer and others in our community by scheduling a blood donation at Miller-Keystone Blood Center: https://donor.giveapint.org/donor/schedules/zip