๐ŸŽ—N E U R O B L A S T O M A. CCAM #ablogaday

As September is coming to an end soon, I ask you please to read this…

As you might know Riley was sadly diagnosed with Stage4 HighRisk Neuroblastoma in November 2014 he was only 21months! Nearly 4 years ago!

When Riley was diagnosed we was told he had a 40% chance of survival and the cancer was in his abdomen, where it started & then spread to all different areas of his little body, his skull, face & bone marrow. Riley had 90 days of chemotherapy. Just over 5 hours in surgery which was successful! He had his stem cells harvested. Followed by high dose chemotherapy that can kill some adults… he then had his own stem cells back in which coursed him to be incredibly poorly! He spent 5 days in intensive care. We spent 9 weeks in hospital during that time. After that Riley had 14 sessions of radiotherapy. Finally immunotherapy and antibody treatment this lasted 6 months.

On the 21st March 2016 we was told Riley was in remission! Heโ€™s now been in remission for just over 2 years!! AMAZING!!! ๐ŸŽ—

Riley recently started year one and is enjoying a life as a ‘normal’ child now. He has a rescan on October 5th!! Were hoping he is still in remission!

Raising awareness is so important! The signs and symptoms need to be recognised!

Before Riley was diagnosed.

๐ŸŽ—What being a “Cancer Mum” really means to me. CCAM #ablogaday day26

Honestly,

you wont take anything for granted anymore. you actually know the true meaning of anything can happen at anytime! it doesn’t matter how much money you have or how happy you are. it doesn’t matter how much stress you have already been though in life!

I often wonder if there was something I could have done even when I know there was nothing I could do. I have always said how much I love Riley and honestly I would die for him. I would literally take his cancer out of him into my own body if I could!

I don’t really care about how well he’s doing at school, I’m just glad he’s able to go to school. Some children don’t!

I used to listen to songs and sometimes honestly, I would wonder if I would have to play this at his funeral. Yes, I did think about burying my child! Because honestly, when I was told Riley’s chance of survival was only a small 40% to me it wasn’t a lot! Your mind wonders off. You think, you really over think…

I thought about myself dying, I know I wouldn’t be able to go on if Riley didn’t make it though his cancer. Riley is my only child (for now!) he’s my world, I couldn’t live without him.

Every leg ache, rash, little bruise, headache he has, it makes me feel sick inside. Always thinking the worse could happen again.

I used to want to scream at people! They don’t know how lucky they are! They don’t know what they have got!

I had to come to terms with what could cure him could also kill him and cause future cancers. It destroyed his beautiful body.

A version of my died the day Riley was diagnosed and a new version came alive. I am stronger then ever.

You meet children, you fall in love with them, each their own little superhero. Their parents become your closet friends.

I want to make changes and make a difference but honestly, I don’t even know where to start. I jus hope my voice can one day make that difference!

This is how I feel and I know other oncology parents feel.

๐ŸŽ—All kinds of emotions. CCAM #ablogaday day25

Hearing a Doctor say the words ‘Your child has cancer’ will never be easy to hear. I think many parents go through different stages throughout this. I know I was feeling all kinds of emotions when I was told and throughout all Riley’s treatments. Grief, denial, anger, depression, bargaining and acceptance!

Cancer can go on for several years, with many highs and lows. Even after your child has been put into remission.

I went though Shock!

Childhood cancer literally came out of nowhere! I was in utter shock when it happened. My child was happy and healthy before I was told the news, I’d have never thought my child would get cancer. Most of us think it wont happen too us!

I felt Numb!

I wasn’t able to think clearly and I know I did struggle to remember things the doctor had said! I had so many questions and thoughts going on in my mind. I had lots of blank moments where I wanted to say something but just couldn’t. My mum started writing things down for us to remember all the important stuff, doctors name etc.

I was in Denial!

Along with the shock and feeling numb I wanted to believe this was a mistake. These results couldn’t be Riley’s. Something was wrong. After hearing it a few days after again that Riley definitely had Neuroblastoma I knew my son had cancer. I knew this was going to be my life now. Nothing I could do to change the results.

I was Scared and I had Anxiety!

I kept thinking about the treatment ahead, it used to drive me crazy. Every child deals with treatment different, I’ve seen children react amazing to the treatment they were getting and I’ve seen children react badly to the treatment. It was always wondering how will Riley react? Will it work? What will happen if it doesn’t work? My world had stopped! Every new treatment would make me anxious. When I’m anxious I emotional eat! Crisps chocolates, hot chocolate will all the tripping’s were my best friends!

Was I to Blame?

I think I often find myself questioning, did I do anything wrong? Did I miss something? Why didn’t I know the signs or the symptoms on childhood cancer? Because I didn’t breast feed Riley I wondered if this was why he got cancer? I think many parents, maybe more mums blame themselves.

Depression!

All the hopes and dreams I had for my future would echo in the hope and dreams I had for Riley’s future. All our dreams I questioned! Sometimes I still feel its hard to express my emotions, even if its just speaking to family or friends. Its still hard for me to openly say ‘Look I’m struggling, I’m really sad’.

I was so Angry!

‘Why me? Why Riley?’ I know I will never be able to answer these questions. I think I took my anger out on people that loved me the most, that I needed the most. Sometimes even though I had lots of people around me I did feel alone. Sometimes I still do. I get lonely. I feel like I’m in the way. I feel like I’m failing as a parent. I cant stay strong and that makes me angry! I know I need to be strong for Riley.

Some days I still feel all these emotions, Some days are worse then others. Everyday is different!

๐ŸŽ— None of us were cancer parents at one point. CCAM #ablogaday day17

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It has been said that you don’t need to put your hand in a fire to know it will hurt. Just as you can pretty much assume that you don’t have to have your child get cancer to empathise and know it would literally be the most heartbreaking thing you’ll ever experience.

There’s this pain you get, physical pain in your stomach. It’s like a knot. A sick feeling that you can’t get rid off. It starts when you hear the word ‘cancer’ and honestly it never leaves you.

When you have kids, they are your entire world. The thought of them having cancer and suffering is heartbreaking to most. 1 in 285 children will get it. It’s not as rare of doctors make out.

Inaction, is not action! Nobody has ever changed anything by doing nothing or sitting back and letting others do the graft! As a parent, it’s our job to advocate. It’s our job to be a voice for our children.

I hope if you read my blog, you think about them. I hope you know I am not doing this for myself but for others yet to embark on this shitstorm of a journey!

It’s too late for me, my child has already had the horrible treatment currently been other to children. Some chemotherapy drugs are 50 years old. Many treatment protocols haven’t changed for years! 11 children are still diagnosed with cancer a day. Statistically 2 of those will die.

Itโ€™s 2018! This is not acceptable!

Maybe we can make a change for your children though? Maybe our voices shouting for a change can bring kinder treatments ones that won’t potentially kill them would be a start!

Doing nothing… changes nothing!

Awareness is key!

Tomorrow it might be you sitting in A&E with your child hearing the words ‘your child has cancer’.

None of us was cancer parents at one point you know…

๐ŸŽ— A harsh realities. CCAM #ablogaday day15

41632256_10156728630939901_6926449335412457472_nFor those of you struggling with the harsh realities of childhood cancer I am posting this month. I am sorry but there’s no real way to dress it up and make it look pretty.. Childhood cancer can’t be glittered up.

Some media portray our children as happy smiling bad children usually with a good outcome but the reality of children with cancer is much darker. We’ve had lovely’s stories shared about Riley in the media and some nasty ones!

Here are a list of articles about my beautiful boy:

Mirror

Daily Mail

Daily Star

ITV Calendar

Yorkshire Evening Post

Yorkshire Evening Post Trolling Second Time

Yorkshire Post

Express

Yorkshire Evening Post Cancer Free

Yorkshire Evening Post First Trolling

Metro

People forget to mention the lifelong side effects children who survive cancer will have. The whole of Childhood cancer is not pretty, the children aren’t always happy and smiling!

I for one try not to sugarcoat the trust just to make people feel more comfortable. Don’t get me wrong I try and share the happier pictures of Riley because I know people can be upset but I’m starting to share more bad pictures of Riley through his cancer journey. The pictures of him in pain, the pictures of him crying!

As awful as it sounds, but it’s the honest truth, it might be your child next, or your friends! There’s barely any research into childhood cancer, into new friendly treatments! My child, your child, everyone’s child needs the research to be done! Childhood cancer is on the up!

Help us and be part of the solution…