Every single person you ever meet has the ability to change your life – you just have to let them. The same is true through the gift of social media… I’ve done so much growing in the past 6 years of being a childhood cancer advocate that I hardly recognize my own reflection in the mirror. Often I search my own eyes for the answers to questions to which there are none. And I have to turn away, because I can’t stand it.
How can the world keep on minding its own business when there are children, babies, really, suffering and dying horrible deaths? They deserve so much better.
My sister moved to Washington DC in July, and last month, I was able to attend Curefest for the first time. Curefest is where childhood cancer foundations and advocates come together as one voice against, you’ve guessed it, childhood cancer.
I don’t understand how people can walk on by other people screaming about childhood cancer.
We marched and chanted: Kids with cancer are worth more than 4%. Seven children die each day, please don’t look the other way!
As a survivor, I tried staring down passerbys, but it didn’t work. I’m sure they heard us. And if I am being really honest, if the story of my life was different, I would probably walk right on by too. I would like to think I wouldn’t, though. Maybe if I carried a sign that said, “This is what a childhood cancer survivor looks like”?
There’s always next year.
Before we went to the White House for our candlelight vigil (Seriously, why do they refuse to light it gold for the kids?), there was one speech that truly tore me me apart… A grieving mom spoke about her beautiful little girl Kate, about how she had the “good” kind of cancer (there is no such thing) – acute lymphoblastic leukemia -90% cure rate, mind you – and how she finished her treatment in September of last year. Lindsay spoke about how beautiful those next 4 months were, and then the other shoe dropped like an avalanche – in January 2016, Kate suddenly relapsed, and then she was just… gone.
This is childhood cancer, and this is NOT okay.
If you really listen to us childhood cancer advocates, you should have no trouble coming to the same conclusion we have: something has got to change!
Childhood cancer research only gets less than 4% of funding from the National Cancer Institute. Adult cancers get the remaining 96%. Children are treated with made-for-adult drugs that are harsh on their little bodies, often wreaking havoc on their organs, hearing, and bodies. Protocol has the people administering the toxic drugs (or even changing diapers) wearing gloves before they even touch the medicine. And it’s not medicine. It’s poison. I’m done sugarcoating. Chemotherapy is a poison that kills good cells along with the bad. It leaves patients sicker than the cancer inside them, and that’s saying something.
This is me at the candlight vigil in front of the White House:
The next day, the second and last day of Curefest, I was able to meet a lot of people whom I was friends with on social media because of childhood cancer. A lot of them have children who have passed away because of childhood cancer. I met other survivors too, which meant a whole lot to me. Growing up the way I did, I always felt so alone because all I heard was “childhood cancer is so rare.”
That is complete and utter bullshit – #TalkIsBullshit, in the words of sweet Gabriella Miller. She spoke this truth two weeks before she passed away on October 26, 2013 from DIPG – brain cancer that has almost no viable treatment options and is a child’s death sentence. She was just ten years old.
What crime did these children commit to deserve such a fate? Their names are carved so deeply on my heart: Elena, Jessica, Dominic, Gabriella, Erin, Natasha, Michael, Avery, Lauren, Grace, Madeline, Lily, Kyler, Ryan, Alexis, I can keep going… but I hope you get the picture.
To the broken families, this is my promise to you – I will fight with you and for you. There is a cure. We will find it. We will make people listen and things will get done. We will be heard. We will not give up, and if you get tired and/or too sad, don’t be afraid to pass the torch for a while. We have you covered. There are more people fighting this war with you than you will ever know in this life.