Defining Support, The Cancer Mom Series: Rae

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, 2016 I learned firsthand how they did it.  With tons oflove, help and support.  Even before Sofia’s diagnosis came in, my family surrounded us in the hospital, letting us know we would face whatever happened together.

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 at the end of the day, when everyone else went home, they were able to sleep in their own beds with the knowledge that their children, their loved ones were safe.  And I was lying in a tiny hospital bed next to my 7 year old daughter who was hooked up to countless IVs with toxic drugs, medications for side effects and beeping monitors knowing that she was anything but safe.  Within 24 hours of hearing the words that would forever alter our lives, I asked the hospital staff to connect me to someone else who had gone through this nightmare.  I wanted to talk to someone who understood what it felt like to have your entire world and everything you dreamed and hoped for crumble around you. It is heartbreaking and devastating on a level that no one who hasn’t heard the words “Your child has cancer” can truly fathom. I needed another mother who had been in my shoes to tell me that we would all be ok.  Unfortunately, HIPAA and other privacy laws make it quite difficult for a hospital to assist with this, so I’ve had to form my own pathways to connect with local families like mine.

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 see the very best of humanity. The one thing that will have a lasting impact on me for the rest of my life is connecting with other cancer parents.  They “get it” in a way no one else can.  There is a unique strength and perspective that comes from facing your very worst fears and somehow surviving them. My fellow cancer parents inspire me, motivate me and understand me in ways no one else can.  We tell each other all the time that we HATE how and why we met, but we are better for knowing one another and traveling this road together.

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 and ideas with one another.

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.

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