It's been a few weeks since I've written anything. That was on purpose. I've written before about my new appreciation for mental health and I could feel myself becoming tired. Not necessarily physical tiredness but more mental tiredness. I'm learning this triggers those really dark days for me so I have stepped away from this as I've been more aware of my vulnerability and sometimes these blogs are not the easiest to write. Well, I mean, the words flow freely and i'm content with the openness but it comes at a price sometimes of my mental well being. It helps me to write but I also have to deal with these words falling out of my brain. I also have a busy period with work coming up and i'm fortunate enough that I work in a role that allows me to make a small difference to people and i'm motivated by that and want to be as switched on as I can.
All of this comes off the back of our trip home to the UK. For those that aren't aware my Niece has been diagnosed with a childhood cancer called Rhabdomyosarcoma. We went home to help with their discussions with Doctors and to support them getting up and running but also because its family and sometimes just being there is the best medicine for everyone.
On the day before we flew home Alyssa was having her second chemo cycle so we called in to see her. It was really tough - i'd been on the Oncology ward to see her already and that was tough as hell but this visit was harder. We were on an open ward with four other families and I couldn't help but look at these other families. All of their parents looked exhausted, drawn almost, and sat their next to their gorgeous kids just counting the hours away. What else can they do other than be there for them? Nothing. One kid in particular was in the opposite corner bed. The sign above the bed said Neuro and I couldn't help but wonder if they were a Medulloblastoma patient just like Hannah. This kid was obviously well into treatment. They had that exhausted look and where the weight loss had caused those puffy eyes these kids have and their skin colour had a slight yellow tinge. Obviously there was no hair and I saw him watching us. Nora was playing up and acting in the way all good two year old's generally do act in strange places. She was rolling all over the floor and making strange noises. This kid suddenly has this big beaming gorgeous smile and it hit me like a ton of bricks. You see my gorgeous girl had a similar big beaming smile that you fell in love with and here I was looking at this similar aged kid doing the same. It was completely suffocating and I could almost feel the walls closing in but in a strange way I wanted to just watch this kid smile for hours.
Then a little while later Alyssa said something that knocked us off our feet. Nora was still in two year old mode and Alyssa wanted her to sit in bed with her and watch TV. She, incredibly innocently said, "Sit in bed with me Nora just like Hannah". Boom! There went the pieces of our hearts shattering all over the place. I looked at Kate as my heart sank and I could she was immediately fighting tears and we didn't know what to do. See we have pictures of Hannah's last days where her and Nora were sat in bed together watching TV and having cuddles. It was a little like reliving our worst nightmares that are very much our reality. Alyssa, the poor thing, was clearly thinking about this and Hannah obviously had a big impression on her - enough so she wanted to replicate the pictures she had seen. How must this poor kid feel knowing she has cancer and her cousin died from cancer?
So, that's why I've taken a little step back. I'm absolutely fine by the way but i'm learning my limits and when a time out is needed and I needed one.
I didn't intend writing for a while but that was until I boarded my Delta flight from Atlanta to Tampa today.
See September is childhood cancer awareness Month. The only problem with September being CCAM is October is very much breast cancer awareness Month. It hit me glaringly in the face as I boarded my Delta flight today. This isn't a dig at Delta by the way, far from it. I fly them all the time with work and they have always been excellent and their staff more than helpful whenever I have needed them to be. I'm also fully aware they do a ton of charity work and a lot of that involves children and childhood cancer. This isn't about Delta at all but about the disproportion of awareness and more importantly funding between childhood cancers and adult cancers - especially breast cancer. You see I flew Delta in September and here I was in October boarding a flight and the Stewardess was dressed in a bright pink outfit. I smiled and did that head turn thing you do when your head is going, 'Na, you're wrong Paul, it cant be'. Then when they brought drinks round the napkins had breast cancer awareness all over them and I was just plain pissed off. No one was dressed in gold in September and I didn't see gold ribbons on napkins. They even have a Breast Cancer One employee survivor flight. I'm pretty sure there are Delta workers who have been through what we have been through.
Don't get me wrong. I love and applaud the fact women have raised awareness and funds for Breast Cancer so much so its having a big impact on survival. Honestly, women are incredible. Its astonishing what treatment advancements they have achieved and honestly forced. I don't want you to stop.
But the one thing that gripes at me though is how many of them are also Mothers. I looked around this plane, I looked at the air stewardess and wondered if they had children. It's not their fault and i'm not blaming people but if they knew what it was like they would swap every penny and dime raised and direct it to childhood cancer research in an absolute heart beat. See, I'm self aware enough to appreciate I have never been diagnosed with Cancer nor am I even remotely capable of understanding what it is like. It must be awful and as most of you are Mothers it's utterly heart breaking to think Kids grow up without their Mum's to this awful disease. But, I've also watched my own Child struggle with through cancer treatment, I've argued with Doctors for answers when the answers simply aren't there, and I've watched my gorgeous little girls body give way and I've held her hand and cuddled her as she drew her last deep breath. If I could swap my life to kiss and hold her one more time and allow her to live a happy life I wouldn't even give it a second thought. Take me now.
There are no comparison to the things I and many others like me have seen. There is nothing on this planet worse than losing your child. You would give your life for your child's without even thinking about it.
I'm not saying all this to be anti breast cancer. I'm honestly not. I just want the balanced redressed. I want more stories told. I want people to realize and understand how fucking awful it is. If you knew, if we were more open and honest to the reality then things would change. I see it now on posts my sister puts about my Niece. Comments completely miss understanding what is going on. No one knows how utterly helpless it is fighting them over taking medications, or food, or even washing and how helpless and guilty that makes you feel. Holding you kid down while they are screaming in fear as Doctors do yet another procedure. It's horrific!
But worse of all is when you need answers and hope and the only path that leads you to are, well pardon the pun, but dead ends.
Its not just survival. Treatments have to improve. These kids bodies are still trying to grow all at the same time as being pumped full of poison and radiation. It doesn't just stop for them and their families at five years survival, the debilitating effects continue long into life and the longer they live generally the worse it gets.
To explain my grievance childhood cancer patients are used in almost 50% of all fund raising advertisements and commercials. 50%! Yet the funding childhood cancer receives is roughly 4% of all budget. This is without the additional fund raising efforts - of which it is equally unbalanced. Since 1980 only four drugs have been approved for use on childhood cancers. FOUR - SINCE 1980! I wasn't even born in 1980 and I've had a child and lost her to cancer in that time. Even Prostate Cancer receives more funding than that all of the combined childhood cancers. The average prostate patient is diagnosed at 65 and the average childhood cancer patient diagnosed at 6 years old. 6 YEARS OLD!
I'm not going to do the Math but I suspect in terms of years saved, curing childhood cancer would have a bigger impact on life years than curing prostate or breast cancer. So why are they worth less financially and why do they receive less focus?
Sure, you may say childhood cancer is rare. But it isn't. Roughly one child in 285 will develop cancer in the United States before the age of 20. When you do the school run tomorrow, or when you are out at an event or a party or in the park with your kids. Look around at all the other kids and their parents, look at your child, and then think about that number - one in two hundred and eighty five. Would you take those odds as rare? Would you be willing to take that risk on your child? No, of course you wouldn't. Your child is worth more than anything to you and you would give your own life for your child's in a heart beat.
The funding has to change. The focus of awareness needs to improve. The balance needs to be addressed.
You fabulous women fundraisers are Mummy's. Please, please, please help address the balance and focus on these poor children.
I'm ranting because I know how horrific it is. I'm writing because I know it could be you. I'm writing because I do not want you or your child to suffer in the same way! It has to change!
Please make childhood cancer awareness every single month!
(ps) Delta - we are still friends, I'll see you next week.
So true x