The One Voice Project

When Peyton was first diagnosed with Leukemia, we were encouraged to stay away from playing “Dr. Google”. The nurses told us that it would only scare us more than we were, they handed us a book that was written some 15 years ago, and left us to our own devices….which of course included playing Dr. Google. I spent hours and hours searching frantically for resources, for ideas, for anything that would make me feel more confident with something so out of our comprehension. Please, please return me to a sense of normal, please let me find some article that will give me back some control, please give me some idea of what to do now!

Yeah, I know, pretty big expectations of a search engine, right?

But it’s what we do. The doctors spend years in school, in practice and they know their stuff. However, I did not spend years in school or practice and all of a sudden I’m responsible for making decisions that are life and death for my child.

I am woefully unprepared. I am desperate for understanding. I can’t make a decision when I don’t even understand the words you’re saying. I’ve always told the doctors to talk to me like I’m a complete moron, incapable of comprehending anything more than 4-letter words. Because when it comes to my child and her disease, I AM!

Some of the greatest advice I got was not from doctors, but from other parents. The people who’ve stood in my spot and been through this before, they can get what I’m feeling because they KNOW. They offered good advice, they understood my fears and anxiety, they were wonderful to bounce ideas off of. Being diagnosed in Tampa was the best thing that could have happened, because we have a tremendous community of families and a support system unknown anywhere else.

But over time I would hear from families that don’t have that kind of support in their area, they would tell me how they wished they had people to talk to the way we do, that they had a community. Other friends told me they wished that there was a way to make parent information and resources more easily accessible, saving families precious time. Some parents have had to be their child’s advocate, searching for treatments, finding the options, looking for every possible chance, and they want to let others who are in the same situation know what they found.

The One Voice Project.

It is the brainchild of an amazing group of cancer moms and I’m lucky enough to be able to help launch this project. This is going to be a site for families of pediatric cancer BY families of pediatric cancer. I hope this becomes a site that encourages and supports families, offering them the chance to be helped and to help others. Our goal is to also enable the parents of these kids to be involved in advocacy programs to raise awareness o fthe critical deficiency in research funding for pediatric cancers.

There is an open invitation to parents and caregivers of children at any stage of the cancer battle to come check it out, become a member and share it with your cancer friends. It is for families in treatment, beyond treatment into survivorship, and bereaved families. Everyone’s experience is valuable and will be a resource to someone.

It’s exciting stuff!

f.r.o.G…fully relying on God
—Anissa