Shine Brightly Firefly

Each month or so the YEAH Council of NH features a new “Portrait of Disability” on their website. It is part of my job to manage the website.  This month, with it being September, I wanted to feature Pediatric Cancer Awareness. We always have some factual information, statistics etc, and resources, both local resources as well as online. Then there is a personal story. I work with someone involved with Cancer Lifeline of NH and she offered to help me find a person to write a story. I have a dear friend who just lost her daughter after a 5 year battle. I thought about asking her, but it seemed too soon. So as I thought more about whether to go through the lifeline, or ask my friend, it occurred to me, that this time, I would write it myself, instead.
I will begin by saying I am unbelievably fortunate that my experience with Pediatric Cancer is not first hand, which is what all the personal stories have been so far. My story is luckily as a bystander. But it is as a bystander whose life has been forever changed, whose eyes have been forever opened. I am one of “those people”. “Those people” who now make me angry. I turned my back, shut my eyes, changed the channel. When Christmas time came around, the one time a year when Pediatric Cancer seemed to rear its head. I couldn’t handle it. I shed a tear. I hugged my kids. I said a prayer. I turned away, because I could not handle it. At one point I even left a job because of it. I have worked with disabilities my whole adult life. I am comfortable in the disability world. At one point I took a position case managing those with chronic health conditions. Pediatric Cancer was one of those “health conditions.” Shortly after taking this job I gave birth to my first child and knew full time work was no longer for me. I looked to jobshare my current position, until I had to do my first intake on a dying child. A child dying from cancer. My heart broke. And I knew, I could not do that job anymore. So, I walked away.
And then, my friend’s 3 year old daughter was diagnosed with Ependymoma. And from a distance I watched a world unfold. A world that I wish I knew nothing about. For 5 years I watched my friend’s life as a cancer mom. Her tireless work for advocacy, for treatment, attention to siblings. All while showing constant love and devotion to her beautiful daughter. I watched her pray for friends on their own Pediatric Cancer journey. I watched her support them, advocate for them, laugh with them and cry with them. I learned the horrid statistics. The number of children diagnosed each day. The number that lose their battle each day. The horrible treatments that they undergo. The fact that so little money is given to research. My children played with her daughter. They live far away and Facebook was how we kept connected. We followed her blog, her Team page. Anxiously waiting for clean scans. Shedding tears for disease progression. Always Cam had a smile on her face. She truly was awe inspriring and amazing. Giving to others on the same journey as her. There were times I wanted to hide from my friend’s posts. So many cancer mom stories. Her friends’ tragic journeys. But I could not anymore. A family I loved was suffering, their friends were suffering. My eyes were open and I could no longer turn away.
This Summer things took a turn for the worst. Cam was put on Hospice. My heart broke so severely. There were some good moments. Harry Styles came to her home to fulfill her dying wish. She and her family were special guests at a One Direction show, meeting the whole band. She continued on Chemo and we continued to pray. And then came the horrible news we never wanted to hear. Campbell Grace had earned her wings. She is now free from pain. The sadness I feel for Cam’s mom, dad and sisters goes so deeply there are not words to truly express it. I am sad as I watch my own children try to wrap their heads around the death of a little friend, one who “did not even make it to double digits” as my oldest constantly laments. We traveled to NJ to mourn the loss of this amazing child. The community came out in huge numbers to honor her and her family. This amazing child changed so many lives. Touched so many people. Blessed us all with her presence. And yet, despite battling for years, trying countless treatments, numerous surgeries, accomplishing victory after victory against the beast – learning to do her scans, and treatments unmedicated, raising awareness and raising funds. Despite years of prayers, she still lost her battle. I am angry. Angry that my friend has to go through this. Angry that her family has to miss their little girl, every day, forever. But I am most angry that after 5 years and 1 day battling for her life, and losing, that she is considered a SURVIVOR, because she made it to 5 years. She is not here. She is not a survivor.
Her mother has had a saying for years – increased awareness, equals increased funding, equals a cure. That has become my mantra. My family is doing 30 days of awareness for the 30 days of September. But we will not stop there. There needs to be a cure. There needs to be an end to these families who lives are being ripped apart. Whose children’s childhoods and lives are being stolen away.
I want to thank you Campbell Grace, and I want to thank your parents. Thank you for all you have done for the Pediatric Cancer world. Thank you for the brilliant light that you shone. Thank you for opening my eyes to this brutal world of Pediatric Cancer, I promise I will not close my eyes to it again.