Defining Support, The
Cancer Warrior Mom Series is a collection of thoughts from many incredible Cancer Moms and how they define support.
By Rae Copp
Rae is Mom to Sofia, who was diagnosed with High-Risk Acute Lymphoblastic Leukemia at 7 years old. Sofia is currently cancer free.
“You never forget a person who came to you with a torch in the dark”. M. Rose
I used to be a Stay at Home Mom, a Soccer Mom, a Class Mom. Then my daughter was diagnosed with leukemia at the age of 7, and I suddenly became a Cancer Mom. I never imagined this would ever be my life. Childhood cancer is something that only happened to “other people”, like those precious children in St. Jude commercials. I used to see them and their families on TV and wonder “How do they do it?” On January 7,
I have been so fortunate in so many ways because I do have such an incredible family, amazing friends, neighbors and even kind strangers who rallied around us. Yet much of the time I still felt completely isolated, because
Thankfully, support came to us in many ways. Meal trains, gift cards, presents for the kids, home cleaning, visitors, fundraisers, friends taking Sam to school, soccer or having him over so he didn’t have to spend another long day at the hospital, neighbors taking care of our yard, and my very favorite – simple text messages, calls and emails from people just saying they were thinking about us, or asking how Sofia was doing, or remembering her schedule of appointments and wishing her good luck before her grueling treatments. Our life was stuck in a repeating cycle of hospital stays, long days at clinic, horrible chemos, terrible side effects, blood draws, tests, vomit buckets, invasive procedures and endless fear. So to get a kind word from someone who had taken a moment out of their normal day to day activities to let us know they hadn’t forgotten about us warmed my heart more than anything else. The worst thing you can ever do is give a cancer family “space”. We already feel completely alone and disconnected from the comfortable reality we used to have, don’t ever assume we want to be ALONE with our misery. Even if we don’t have the ability to respond, we still received the message that you care and it means the world to us.
Every form of support we received was essential to us making it through this train wreck that is pediatric cancer. We needed each one and are forever grateful to every single person who was part of helping us during our darkest time. While the reason is terrible, we are still lucky to have
After Sofia was diagnosed with pediatric cancer, Rae learned that there was no family support group or mentor family available at Levine Children’s Hospital or elsewhere in the Charlotte area. After connecting with a supportive online group called Momcology, Levine Children’s Hospital agreed to partner with Momcology to bring their peer-to-peer support group model here. Levine became just the second hospital in the country to offer it. Since the success of Levine Children’s Hospital Momcology, the program has spread to other children’s hospitals across the country.
In addition to the Levine Children’s Hospital group, Rae started a Facebook group called Charlotte Pediatric Cancer Support Group so that ALL primary caregivers with a child with cancer could connect with one another regardless of where their child was treated. This enabled families affected by pediatric cancer to share information, opportunities, fundraisers
Donate in honor of these incredible women, your donation to the Isabella Santos Foundation helps fund research so desperately needed for rare pediatric cancer patients.
MAY CANCER MOM SERIES:
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