I sat down to do an interview a few weeks ago and was asked “Why do you have such a passion for childhood cancer, you were never personally affected, right?” Right. I was caught off guard, the reporter was as friendly as ever and it wasn’t a snarky question. It was a genuine, “WHY?”. And then I thought- but why not? Why do we push off other peoples tragedy as non-existent? An oncology mom once said to me “I never realized how many lives keep going, instead of stopping to help.”
Have you ever had a feeling of extreme frustration about a situation that is completely out of control? It makes your head spin, your hands tight, your brows furrow and although you can’t fix it, you’ll certainly try, won’t you?
I’ve always tried to be transparent when writing my blogs because at Fourth and Gold I want you to get an in depth reality into childhood cancer and everything that comes with it- the reality of research funding, the lack of awareness, the sickness, the milestones we celebrate, the courageous warriors and their incredible resiliency… in other words- the good times and the bad. I’m a hopeless romantic and I thought when I launched Fourth and Gold that everything would fall into place, every person I talked to would spend their paychecks on childhood cancer research, kids would stop dying and I would be out of a pediatric oncology nursing job within a year. OK- not really. But I had (have) high hopes of significant changes taking place through Fourth and Gold. Yes- things have changed and I am grateful. The ones closest to me have opened their eyes to childhood cancer, the STAR act was passed, a few promising clinical trials have come to fruition and I’ve met the most incredible people. But there’s still a problem and it’s still childhood cancer.
I’m frustrated today. And sometimes I’m frustrated on other days, too. I try really really hard not to take my frustration out on others, but sometimes I fall short. One of my biggest down falls is not taking it personal if someone doesn’t seem to be motivated to open their pretty little lies to the nightmare of childhood cancer and help me change it.
I can’t understand for the life of me why it can be so hard to get people to realize that just because they aren’t negatively affected by childhood cancer, that they can and should still care about it? Why can it be so hard to get people to open up to the experiences of others? You don’t have to have a child with cancer to advocate, donate, reach out or help change, do you?
I’m frustrated today because I woke up to the news of the most beautiful little boy who has been fighting for his life for a year and 4 months- going through a below the knee amputation in an attempt to kill off the cancer, suffered through chemo for a year… and just found out his tumors have spread to his soft tissue- leaving his days on earth numbered.
I’m frustrated because no matter how much I want to change that, no matter how much I advocate, the reality is, I can’t get everyone to help make the change. I’m frustrated because my friend, Cori, pointed out to me she can share a picture of a heart and get 100 engagements, but share a story of a child battling cancer needing help and get 2 engagements. I’m frustrated because the government wants to tell us how rare childhood cancer is, yet St. Baldrick’s tells me that 1 in 285 kids will get diagnosed with cancer. I’m frustrated because I want people to see the amazing, strong willed, beautiful children that are fighting cancer and feel led to show them they are worth more than 4%. I’m frustrated because advocating for childhood cancer research takes more than broken hearted cancer families and that I struggle to not get offended when I try and get more people on board and it doesn’t always happen.
I’m frustrated because childhood cancer shouldn’t exist… but it does… and as much as I want to, I can’t change that overnight.
But through all of this frustration, I’ll find another light. I’ll pick back up, continue to fight and wage war on this cruel disease… because wars aren’t won overnight and typically the feeling of frustration and defeat settle in just before something big is about to happen. So I’ll fight through the frustration and we’ll win this war- we have to.