Our Patients’ stories: Processing my son’s cancer

by Boston Children's Hospital staff on May 4, 2011

Caroline Rider used to work in publishing before her three children were born. Life was going according to plan until her son, Charlie, got sick. After that her world tipped upside down, and in the shuffle Caroline found herself publishing again, but in a different capacity than what she was used to.

Charlie

When Charlie, my then four-year-old son, was diagnosed with Acute Lymphoblastic Leukemia in October of 2006, my structured and predictable life came to a screeching halt. I had always prided myself on organizational skills that let me run a household of five with calm and ease, but after Charlie’s diagnosis concepts like “predictable” and “calm and ease” went out the window. It was a very scary time for my family, but it didn’t take long for me to find an outlet for my fear that became a safe harbor against our sudden turmoil.

Four days after Charlie’s diagnosis, I wrote an e-mail to update my friends and family about our situation. A week later I sent out another, and then another a few weeks after that. Overall I sent 39 ‘Charlie Updates’ during the course of my son’s four-year battle with cancer. Initially the updates were a way to share lot of information about Charlie’s progress with a lot of people, and do so in a quick and efficient manner. However, as the months and years passed, the updates became just as much of an emotional support as it was an information sharing strategy. Writing about our ordeal helped me cope with the problems my family and I were facing. It was cathartic to write it all down. It took away the burden of having to retell the story over and over again, but it also helped me to focus on the day-to-day. Once I wrote an update, I could put the unpleasantness of certain situations behind me and focus again on getting my family back to what had come to be considered normal.

At first I sent my updates to about 25 people, but that list quickly grew to over 200 people. And then a funny thing happened on a way to a cure. I began getting cards, letters and e-mail replies not only from the people I had reached out to directly, but also from people I didn’t know. Many of the 200 or so people on my “Charlie List” passed my updates on to dozens more. Often these notes would start with, “You don’t know me, but…” and then they would offer words of encouragement or relate a survival story of their own. Both writing the updates and receiving responses was a lifeline for me. It let me know that we were loved and cared for and that somehow we would prevail and come out of the other end of the tunnel better people for what we had gone through.

Caroline, Harry, Max, Mike and Charlie

My process for writing an update was simple. Whenever something important happened in Charlie’s treatment, or Charlie or one of his brothers said or did something funny, I wrote it down on a piece of paper. If I were having a particularly bad day (or week, or month) I would write that down on a piece of paper as well. I would add each of those papers to an ever growing pile of “Charlie Notes” on my desk and when I found a few moments I would sit down to write my next Charlie Update using the compiled memories I had jotted down. Most of the updates averaged about four pages long, and they usually took me about a week to write, but once I hit “SEND” I felt the stress leave my body. It wasn’t always easy to write because so many of my words focused on our families’ difficulties related to Charlie’s cancer. I would often be in tears while writing them, but it was very important in helping me process all that was happening. And when caring for Charlie became a full-time job, the updates gave me something else to focus on instead of the disease that was attacking my child. But I wasn’t just writing for myself. I really felt like people were waiting to hear more about Charlie and I didn’t want to disappoint them.

As parents, our kids’ childhoods seem to go by in a blur. Often my mother or mother-in-law will comment on something one of my kids did or said years ago. They will look at me and say, “Do you remember that?” Honestly, most of the time I don’t remember. As a parent I am so caught up in the minutiae of daily life and raising my family that some of the things I wish I could remember have slipped past me.

However, what happened to us when Charlie was sick was too important to sneak by undocumented. With honesty both brutal and heartwarming, I tried to help people understand the good, bad and ugly sides of childhood leukemia. When possible I even used a little humor. (Yes, if you look close enough, there are some funny things about childhood cancer.)

When I go back and re-read the updates I am constantly amazed at what we went through and even more so of how much of it I have forgotten. If I hadn’t written them down, many of these memories (both good and bad) would be gone forever. As it is now, I have created a simple memoir of how Charlie and our family stayed sane during a time of enormous upheaval. My children will now be able to share this story with their own children and recall how we not only survived such a horrible time, but how we thrived during it.

But we couldn’t have done it alone. We feel very fortunate to live in the time and place we live in. In the past four and half years I have driven into Children’s Hospital Boston and Dana-Farber so many times, my car can practically drive itself there. However, when I got frustrated with the situation I would remind myself how lucky we were to have the world’s best medical care in our backyard. Sure, some days it takes longer to get there, but I knew there were plenty of people who flew to Boston for the type of treatment Charlie was getting, some even relocate their entire families to come here.

Doctors like Anupama Narla, helped the Riders through tough times

And they make that trip, no matter how long, because there’s hope here. 25 years ago childhood leukemia was a death sentence; now it has a better than 90% cure rate. I know we owe that to people like our social worker Jorge Fernandez, and doctors like Kim Davies, Anu Narla and Christy Duncan. They all are such remarkable people and we hold each of them very close to our hearts.

We really do live in a remarkable age with so much new technology being introduced every day; it boggles the mind. We will be forever grateful that our family was able to benefit from so many fascinating innovations and from so many brilliant doctors and researchers.

Life is good,

Caroline

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