Two days ago, you were told your 2-year-old son was diagnosed with brain cancer. He just came out of a 12-hour surgery, hooked to multiple tubes and lines, and now will stay in the Pediatric Intensive Care Unit for two weeks or more until he is breathing on his own and considered stable enough to be released and go to the Pediatric Cancer wing. Now, doctors are recommending you relocate to another city for six to 12 weeks of outpatient treatment to give him the best chance for survival. Little do you know that this is just the beginning…
Questions swirling through your head:
• Will your employer let you take three-plus months off?
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• Who will take care of your other children when you are gone for the next two to three months? And the many months to follow?
• Where will you find a place to live that will be acceptable for your sick child in this city you have never been?
• You can barely afford your current rent or mortgage – how are you going to pay for a second home?
• Where do you even start?
For our family, this scenario wasn’t some nightmare. It became our reality for almost six years when our son, Cooper, was diagnosed with brain cancer a month after his second birthday in 2009. He endured treatments at six facilities in five different states, 10 brain and 2 spinal surgeries, 10 plus medicines given daily, blood draws two to five times a week, 50 MRI scans, 70 rounds of radiation therapy and multiple rounds of chemotherapy. As unbelievable as this may seem, the shocking reality is that this is a fairly typical scenario for a child with brain cancer.
As we began this odyssey, it didn’t take us long to notice that, in a way, we were actually lucky. We had understanding employers and a vast network of close friends and family who offered support in every conceivable way, and each other to lean on. We encountered so many who didn’t.
That is why my husband, Justin, and I with the help of our Southern Village community launched Super Cooper’s Little Red Wagon Foundation in 2010.
Red Radio Flyer
Our name was born out of the countless hours of pulling Cooper through hospital floors in a red Radio Flyer wagon that had now become his legs as he could no longer walk.
While we made our daily laps and saw the same faces over and over and learned their stories, we quickly grew aware of the need for housing and food for pediatric cancer patients and their families. The treatments would be long and difficult for the child and all involved in their care. And there would be those left behind, the sibling(s) that just doesn’t understand why they can’t see their brother or sister or why Mom and Dad are away again?
There needed to be a place that felt like home and would allow the entire family to stay together with a room and bed for each, and to feel as “normal” as possible without the stresses of paying a second rent or hotel bill, or cooking dinner after a full day at the hospital with a very fragile child.
Currently, we support three ReCOOPERation “houses,” one serving UNC patients in Chapel Hill’s Southern Village, where our family lives, and two in Durham serving Duke patients. We’ve served more than 40 families in the past year alone. At a ReCOOPeration home, a family can enjoy a meal delivered from families in the surrounding community, watch TV, and spend time in an environment that is safe, clean, private and welcoming for their child, who may have a weakened immune system because of radiation or chemotherapy.
Our strong and courageous Cooper lost his five-year hard-fought-battle this January, passing away at age 6. He spent more of his life fighting cancer than living without it. We absolutely want a cure and want to raise awareness so more money goes toward research to create new treatments and end this disease. But in the meantime, there are families watching their child struggle through the riggors of devastating treatments, wondering how they will put food on the table, how they will keep their job, and having to make the unthinkable decision as to whether they can afford to travel for treatments that may give their child the possibility of a future.
This is a decision no parent should face. We want to take those concerns for these families out of the equation. For that to happen awareness and participation is key. We are determined to honor Cooper’s legacy by expanding our foundation to serve not only more people locally, but also beyond our state and regional borders.
No one ever believes this can happen to their child, but it CAN and it DOES. Consider:
• 28,000 children in the U.S. are living with a brain tumor diagnosis.
• chances are 1 in 285 a child will be diagnosed with cancer every year.
• Cancer is the leading cause of death by disease among U.S. children 1 to 14 years of age.
• A six-week hospital stay can cost a family $9,000 or more in lodging, travel, food, fuel, lost wages, etc. (many children are in and out of hospitals and treatments for years).
Our immediate plan is to add two housing units by end of 2015 to help meet increasing demand. Our fundraising goal is $100,000 this year, and of course, we need your help to get there. A great way to start is by participating in the 5th Annual Rockin’ Run and Family Festival on Saturday, Sept. 20, Chapel Hill’s in Southern Village Neighborhood. Our board member Eric Montross will MC this family fun festival that includes a chipped 5K, family bike and run, live band, a mechanical bull, bouncy house and slide, game and food trucks, something for all ages. But we also need support year round in the form of donations, meals, and volunteer time.
The Chapel Hill-Carrboro community has wrapped their arms around our family, the foundation, and the 40 plus families we serve in so many ways. Jump on in Coop’s Little Red Wagon and let us pull you along on our journey to provide a home and support for families fighting childhood cancer.