May is Brain Tumor Awareness Month…it’s a real thing. I actually despise that there has to be an awareness month, but heartbreakingly, it really is necessary. Before Hayes was diagnosed I did not realize that there was an awareness month, or that Gray was the color for brain tumors or that brain tumors are the leading cause of death in children. I had absolutely no clue. I knew that brain tumors were a bad thing, but I assumed it was a rare thing that never happened, like a scary lottery. You want to know a frightening statistic? Your chances of winning the lottery is 1 in 175,000,000. Chances of your child getting cancer is 1 in 285! Out of that number, 26% are brain tumors. But here is the thing, just like you, I think numbers are so arbitrary…they lack emotion and connection. These kids are so much more than statistics! I would say that I have literally gained hundreds of friends through social media of parents of kids with brain tumors. People I never knew before but we have a link, and now a deep connection. We are parents of brain tumor warriors! It is a club I wish on no one.
I remember one night up at Primary Children’s Hospital. I had just laid Hayes down for bed and I needed to get out of the room and eat dinner. The Ronald McDonald room was located on the 3rd floor and they were giving out a free meal. I was so sick of cafeteria food so I made my way down to get my free meal. If I am being honest, Steve and I really didn’t like going there. It was depressing to be around other sad parents. But, I was sick enough of the cafeteria that I ignored the hesitation and went to the Ronald McDonald room anyway.
I sat down at a table of other quiet parents, sadly eating their food in silence. I couldn’t eat my meal in silence so I asked what brought them there. A couple of parents were there because their kids had RSV and I listened as they told their frightening stories. Another mom was there because her son had cancer. I immediately reached out to her, feeling that connection of cancer mom to cancer mom. I asked her what cancer her son had and she told me leukemia. She reciprocated the same question and I replied with “brain tumor”. Her face immediately dropped and with total sympathy she said, “Wow, that’s really, really bad. I hear treatment is the worst for brain tumors and results aren’t great.” She continued on with the shocking responses over and over again. With each response my heart dropped a little more with the reminders that we really were in a terrible situation. We were a part of the cancer club, but in that moment I felt even more isolated as I realized that I was a scarier subtype. I tried to stay as optimistic as possible but in moments like this I would immediately be brought back to the reality that I desperately wanted to ignore. The reality is, research is massively and significantly behind for brain tumors as opposed to other cancers. I tried to loop Hayes in with the other cancers to keep hope alive, but if I am being honest, the second that Hayes was diagnosed with a brain tumor he was at an extreme disadvantage. Many kids survive brain tumors, but many more do not. Breaks my heart to even put that into words, but it needs to be said. These kids deserve to be fought for! This is why Steve and I went to D.C. We lived through the nightmare of a child with a brain tumor. I dread other parents receiving a cancer diagnosis’ for their children! Brain tumor or not, cancer is a real life horror that is killing more kids than AIDS, cystic fibrosis, asthma, diabetes and heart disease COMBINED! Cancer is hunting down our children and it feels like the government is ignoring it. The challenge that comes from the government not funding more than 4% on childhood cancer research is that it is our job to donate to foundations that fund private research and donate to cancer families! Here is one final frightening statistic, in 3 days, Americans will spend on Starbucks coffee, what the federal government spends all year on childhood cancer research. So, for the month of May, I have a challenge for you all. Whether it is Starbucks that is your weakness or a Coke Zero, try to forego one day of paying for a drink and donating what you would have spent, to a foundation. Do this for a whole week, once a week, once for the month. Whatever you can. There are so many good foundations if you already have your favorite or there is the HayesTough Foundation (wink, wink, nudge, nudge 😉). Imagine the difference we could make if we all did this together! 🎗🎗🎗
For everything donated during the month of May, we will donate proceeds to a brain tumor family! Let’s change the world together. #hayesarmy