by Rachel Reynolds
as told to Julie Weingarden Dubin
On January 20, 2009, while Barack Obama was taking the oath of office, we learned that our 3-year-old daughter had an orange-size tumor in her brain. Two days later, she had a surgery to remove as much of the tumor as possible. Once the pathology returned, we learned it was a primitive neuroectodermal tumor, or PNET — a type of brain tumor that is very rare and very aggressive. Over the course of that year, Charlotte had three more brain surgeries, multiple rounds of chemotherapy, proton radiation, and other various treatments.
Unfortunately, despite intervention from some of the best doctors in the country, the tumor continued to grow. On January 7, 2010, Charlotte’s body finally succumbed to the tumor that had invaded her spine and central nervous system. Charlotte was almost 4 1/2 when she passed away peacefully at our home.
I work full-time as a principal of a private school for kids with autism, and I'm used to helping others, but it was difficult to learn how to welcome help from people when Charlotte, my only child, was ill.
Roger and I were amazed by the support that we found in our community. It came in large acts of kindness, such as the freezer the parents from Charlotte's preschool bought us for storing extra food. It came in airplane tickets bought to help with our travel expenses, food brought to our door many nights, and the donations (large and small) that people made to help with our daughter's medical care. It also appeared in small acts: the anonymous plate of cookies left on our doorstep, or the offers to babysit Charlotte so that Roger and I could continue working. It came in simple notes that said, "I’m thinking about you." There was never a time when we didn't feel supported by our community.
I’ve always thought of myself as an optimistic person. Losing Charlotte has definitely been the darkest and lowest period in my life. I move forward one step at a time. I find strength in knowing that my daughter endured more in her short life (medically) than her father and I have in our combined (almost) eighty years. When you face challenges like these, you do have a choice. It's never easy, but you can move forward by taking small steps. That's how I cope.
Charlotte loved to sing and read books. She just wanted to soak up life and experience it completely. Charlotte taught me how to see the world like a child and appreciate the time that we have.
I realized after Charlotte died that I could turn my thoughts and feelings about our journey into something that may help others. I wrote the book, Four Seasons for Charlotte: A Parent's Journey with Pediatric Cancer, hoping that it helps families experiencing challenging times like ours, but I also hope that it can provide insight for medical providers, community members and the many other team players who are called upon to support families in their time of need.
Even before Charlotte's brain tumor was deemed terminal, we knew that we wanted to give back to the community as a way to thank everyone for the tangible, monetary and spiritual support we received. We created CJ’s Thumbs Up Foundation (CJSTUF) in Charlotte's honor to pay-it-forward and help others in need. CJSTUF supports families in situations like ours by providing financial assistance grants (in $500 increments) to families of children with chronic and life-threatening illnesses. We also partner with other community organizations to provide healthy meals to caregivers in the hospital and other emergency assistance when we can.
Roger and I are encouraged and uplifted by our community. Friends and strangers surrounded us in our time of need. Through the foundation, we can be a lifeline of support for as many families as possible. We've turned our grief into something positive and we're here to help other parents in Charlotte's honor.
Accept help! As moms, we are always doing things for others and we tend to put our needs at the bottom of the list. I learned very quickly that I couldn't do everything. There were many people willing to help, and I needed to accept that help.
Photo credit: Deb Harper
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