OLD SAYBROOK - First-time author Leslie W. Jermainne often kicked-around the idea of writing a book. Maybe a light romance novel, she thought, never imagining that her first book would be born from the life-changing spiral of her son Brian’s cancer diagnosis at age 15.
“Notes from a Cancer Mom” takes the reader along on Jermainne’s journey from a dark place of shock, and fear, to a place of hope and gratitude.
The Old Saybrook resident collected emails, facebook posts and letters she wrote and received during the 15-month struggle to save her son’s life, added some commentary, and self-published her work. She hopes that her experience will help parents who hear the dreaded words, “your child has cancer,” navigate the foreign waters of pediatric cancer.
“I always thought being an author would be so great, but this book began by getting blindsided with Brian’s diagnosis on April 18 and being admitted to the hospital on April 19. We just basically disappeared from our lives, so I started writing these emails to let people know what was going on,” Jermainne explained.
“Before pulling the book together, I asked Brian for his permission. He’s never read any of the emails, never saw the Facebook posts.” He said that it was brave of me to re-read all of those messages, but that he may never be able to read it.
Jermainne re-read her emails, but she didn’t rewrite them. The original state of her words adds to their rawness, the awareness that this is happening to a real person. The book’s introduction and tales of fear and frustration felt shortly after diagnosis put the reader squarely in Jermainne’s world at the beginning of a leap into the unknown from which she, her son, and her husband would emerge forever changed.
People who learn about cancer touching a friend’s life wonder what they can do. Jermainne advises, “be honest, be curious, bring food – don’t ask, just bring something that can be frozen for use on another night if necessary. Don’t forget that this is going on, send a text just saying ‘how are you, what’s going on today?’….The first thing I would do in the morning is look at my phone. If I didn’t have any messages I would wonder ‘is there anyone out there?’”
“Knowing that this could not turn out well, I became focused on gratitude,” Jermainne said. People would ask me ‘how can you have gratitude about having a bench to sleep on?” I became so grateful for the little things. Friends told me that sharing these thoughts helped them bring gratitude back into their own lives.
Early in remission, “Brian went on a field trip with the Jimmy Fund…It was a huge turning point for him. He made friends, just being in the presence of all of these people who know what you’ve been through is a huge help,” Jermainne said, adding, “I felt like I had found my people too. Here were other moms who had slept on cots, given shots, worried about blood counts and took temperatures, here were my peeps.”
“I feel like the experience wasn’t going full circle, it’s more like a spiral, starting from a hard place and opening up as we went along,” Jermainne said. It’s hard even for her husband, also named Brian, to understand exactly how life-changing this experience is. He stayed home to care for the house and keep their business going while his wife and son were away in Boston for week-long treatments. “I think he thought we would go back to normal after Brian’s treatment was done, but you go forward to your new normal. You can never go back,” Jermainne said.
Last year, to celebrate Brian’s one year in remission from stage lll Burkitt’s Lymphoma, Jermainne participated in a St. Baldrick’s head-shaving fund raiser, 46 Mommas Shave for the Brave, in Boston. She thought about the women she would meet who had lost their children to cancer. “I’m coming face to face with my worst nightmare. What can I possibly offer these women? But I realized that just my presence and the group support was enough, and that they were there to help prevent this from happening to other mothers. Shaving my head was empowering.”
“Brian’s very mature, he wants to get on with life. He realizes that life is fleeting and precious,” Jermainne said of her son now two years and four months into remission. Homeschooled since third grade, Brian graduated from a distance learning high school program, has his driver’s license, friends, loves his job at Otto in Chester, and plays his guitar. Although the chances of his original cancer returning are low, he will need lifelong monitoring to watch for some of the side effects of chemotherapy such as heart damage, or other cancers.
The reason Jermainne shaved her head, and the reason she shares her story are the same. She writes a heart-wrenching, four-page reason for everything she does. The following are a few excerpts: “It’s for a woman I will never meet. I will never know her name, or her child’s name. But I do know that tomorrow her world is going to come to a crashing halt…She will be sitting in some hospital waiting room with too bright lights and a cup of cold coffee…she will hear some of the most horrible words of her life “your child has cancer”(46 moms in this country hear those words for the first time each day)….She will touch her child ever so gently, her innocence as a mother already shattered into tiny little fragments…She will answer her child’s question ‘yes, honey, it’s cancer.’….She will have no idea what is coming, but she can tell her child the universal words of comfort, ‘it’s going to be okay.’”
Proceeds from the book will go to a fund for Brian, Make-a-Wish Connecticut, The Jimmy Fund, and St. Baldrick’s (cancer research).
Photo: Leslie and Brian, courtesy of Leslie Jermainne.