I’ve written this over and over, Then I finish it and I delete it all.
Why? Because cancer, especially childhood cancer cannot be summed up in a matter of words.
My name is Angie, I’m 25 and for the last 3.5 years my family have been fighting against childhood cancer. My little boy who was 3 when diagnosed (now 6) was diagnosed in July 2017 with Very high risk- B cell acute lymphoblastic leukaemia. Eddie was then diagnosed with a very rare and debilitating disease called Avascular Necrosis (AVN) which is a very horrible form of bone necrosis that slowly eats the bone away and causes horrendous pain and suffering. Eddie has AVN bilaterally (both legs and in currently 9 places). Eddie is bound to a wheelchair and he will no doubt undergo amputations in the next decade.
I can’t tell you the heavy burden my heart has held.
I cannot tell you the amount of times I’ve cried silent tears holding my child hoping their little body continues to go on and make it through treatment. I cannot recount the numerous times my baby screamed at me to let him go when I had to restrain him for invasive, horrific, barbaric procedures.
I’ve held my best friends in my arms at their baby’s funerals.
I’ve lit candles for sweet children and teenagers who I loved, who no longer could live and battle with the absolute worst of cancers because those cancers stole them from the arms of their loving parents. I know your reading this saying that’s so terrible, but it won’t ever affect me. Well… I was that exact parent, until it actually happened to my baby. We were on the verge of losing him. Hours away from burying him.
Saying goodbye forever.
I know when you read things like this you question the reality, because it IS hard to believe. You question if that anger, pain and absolute heart wrenching devastation is real, but it is. And there are thousands and thousands of people in this world who are suffering from this heartache. Somewhere in the world right now, is a parent, barely holding their shit together with a child hooked up to tubes, beeping machines. They’re making a crappy cup of coffee so that they can survive on their crappy, uncomfortable 3 hours of broken sleep. They are living in a hospital eating crap overpriced food watching their child battle the biggest demons you can’t even see. Somewhere else in the world there is a parent, waking their child up for school and noticing that there are unexplained bruises on their child’s leg. That parent is now absolutely destroying themselves “ that the cancer is back”. Until a doctors appointment and blood test will confirm they are just “over reacting” or in a oncology parents eyes “ PTSD”.
But that is the struggles survivors face every day. When will it return?
Somewhere in the world, there is a child who’s sick. Parents in a hospital room about to have the entire world they know of crashed down on top of them and thrown into a world of cancer. It would take hearing the world destroying words, “I’m so sorry but your child has cancer” and just like that everything you’ve ever known is gone. Your friendships will crumble, your lives will stop. You’ll leave your job or lose it. You’ll lose your house or your car. You’ll blow all of your money on saving your child. Thousands, if not hundreds of thousands. You’ll become a doctor and advocate, a nurse, a nutritionist and a warrior of war in less the 24 hours. You’ll experience blood, plasma and platelets of strangers enter your child’s frail body.
You’ll look at donor blood like its liquid gold.
When you hear that a person is a blood donor, you’ll hug them and look at them like they are a superhero. You’ll have people make you meals that you think of that gesture like somebody handing you a million dollars because that’s how good it feels to receive. You’ll have people donate money to you that you will be mortified to receive but so incredibly thankful to get. You’ll be late on your bills. You’ll be stressed beyond what you could ever imagine. You’ll fall and crumble under the hardest moments of your life. You’ll change into a completely different person. You’ll forever be scarred but you will be amazed at the love and fight you have for your baby. EVERYWHERE, there are parents fighting for the world to listen to our plea that childhood cancer is stealing our children. Stealing our children’s childhoods.
Having such horrible impacts on our children’s and our mental health.
Having our children diagnosed with secondary cancers, secondary diseases and life altering conditions. Like Eddie, who is now left to be in a wheelchair and will most likely be in a wheelchair for the rest of his life. Cancer Leaving us with PTSD like a war veteran who has seen the most horrific things a human can experience. Leaving us with anxiety that is crippling us into medication and therapy. Leaving some of us with empty arms where our babies belong and no longer are. Leaving us with addictions, horrible mental health issues and broken hearts.
Metaphorically, Every child picks a number.
At some point the world calls a number, and God help you if it’s your child’s number. Because your life will never, ever, ever be the same. May cancer, one day, just be a bad story.
In September, I fight.
I fight towards acknowledging and I remember the heroes we fought alongside. I remember the nurses who not only raised our kids to health but also held their hands out to us as parents and pulled us out of some of the worst moments of our lives. September is childhood cancer awareness month. If you can strike up a conversation about childhood cancer, you should. Not just in September, for childhood cancer awareness, but every month.
No child should have to be cancer brave.