In honor of childhood cancer awareness month, we asked a mother from our online group to share her thoughts about finding her voice to advocate for her daughter through the support she received from those who were also navigating a similar diagnosis. Our first guest post is written by Jennifer Page. Jennifer’s daughter was diagnosed with leukemia in 2015; one month before her first birthday. Since her daughter has completed treatment, Jennifer has continued to offer her support and encouragement to those in our online group.
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A cancer diagnosis is like falling down the rabbit hole and finding yourself in Wonderland, filled with other people who are cancer experts. As you try to get your bearings, you desperately collect the bread crumbs of information unintentionally dropped by doctors, nurses, and residents. During your interactions they forget that this is all new to you and that you don’t understand the jargon or how all the pieces fit together. You must become an expert yourself, even as you struggle to keep from drowning in a sea of grief and shock.
My daughter’s cancer diagnosis caught me completely flat footed. Even with her birth diagnosis of TMD (pre-leukemic cells), it never crossed my mind that she would develop AML (acute myeloid leukemia). She was never sick! With her cancer diagnosis at 11 months old, I was once again scrambling to find our way through an impossible situation.
As soon as my head stopped spinning with the cancer diagnosis, I did what I do best, I started looking for resources. This is what I did when my daughter was first diagnosed with Down syndrome. When she was born I sought out the parents who had already walked this road; the ones who had done the research, and were seeing progress with their children. So once again with a new diagnosis I sought out the parents who had already taken the cancer journey. The ones who could teach me how to advocate in unfamiliar surroundings. Parents who said it was okay to question the doctor’s decisions, and counseled when to panic based on symptoms, and when to learn how to cope with the parts that were completely out of my hands to change. With this support, I was able to be my daughter’s best advocate. I was able to get her alternative treatments in place to lessen the harsh effects of chemo, and I learned to cope with the cancer journey the best I could. The support of other cancer parents helped us to make it through the nine months of almost constant hospital stays.
When a child is born a parent is created; so is an advocate. Someone who will do anything to ensure that child is happy and safe and given everything they need to grow and mature. With a cancer diagnosis you need another kind of advocate, one with experience, someone who cares, who will take your hand and gently guide you through this new and frightening journey. You need someone to offer the support as you take on the new role of advocate for a cancer patient.
This is where the Down Syndrome & Cancer Coalition comes in. They were founded to offer that support and guidance, by parents who have walked this lonely road. They serve parents, enabling them to become their child’s best advocate so that they can return to ensuring that child is happy and safe and given everything they need to grow and mature.
-Jennifer Page, mom to Grace
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This month, we are hosting our first Strive For Five campaign. We are looking for a thousand people to donate just $5 each. Every newly diagnosed parent or caregiver that comes to our organization receives a care package as well as online support and camaraderie from those going through similar circumstances.
Donate by clicking here!
Not able to donate? You can help out by sharing our links and photos on your social media pages, using the hashtag #strivefor5
Megan and Becky
Megan Dodd and Becky Carey founded the Down Syndrome and Cancer Coalition (DSCC) in 2017. These two moms were brought together by their personal experiences with Down syndrome and leukemia. Together, they recognized a need to provide more in-depth support for families facing a cancer diagnosis. From there, the Down Syndrome and Cancer Coalition was born.