Tag: go gold

CCAM

🎗Goodbye September. CCAM. #ablogaday

justsophandriley

So September has passed us by,

The month is nearly done.

We thank you all for going gold,

Each and every one.

We weren’t here to scare you,

We don’t want to annoy.

We simply like to spread the word,

To help your girl or boy.

We sprinkled awareness everywhere,

Shared the stories of those we love.

We’ve Glowed and we’ve sparkled,

To show the hope that we dream of.

For the children who are in pain,

For our babies suffering.

For the parents clinging onto hope,

Why? they are wondering.

For the Angels up in heaven,

We must never stop believing

That one day everyone will know

And they’ll be no more grieving.

So now you know.

You’ve learnt a lot.

Children are suffering,

Much more than you thought.

But for us it won’t be over,

We’re aware every single day.

Please keep spreading glitter,

In each and every way.

For us, our courageous children,

Are far more precious than gold.

For us all we truly want,

Is for our children to grow old.

🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗🎗

CCAM

🎗The GOLD ribbon. CCAM. #ablogaday. day30.

justsophandriley

So that’s it. September is over for 2018!

I’m winding down now, I’m tired after reliving some of our memories through cancer… I need to put them back in my box rather then in my head. After all we are forgetting cancer this year (well trying!)

I think it’s safe to say us cancer parents have a lot to put up with. There is a lack of funding, research and awareness!!!

We want you to know the GOLD ribbon as well as you know the PINK ribbon. I know every cancer is shit. My grandma had breast cancer so I always support the pink ribbon too. But, in awareness terms breast cancer has a high profile. It gets a fair bit of funding and awareness.

Most people seems to prefer to stick their heads in the sand and honestly pretend children don’t get cancer, rather than face the stark reality that they bloody do and they also still die in 2018!

We need kinder treatments. Not the ones that give you secondary cancers hear later when you are just starting to enjoy your life.

Childhood cancers are different to adult cancers. They don’t have the same treatments, they have different research.

Honestly. The more we shout about Childhood Cancer, the more awareness we raise!!! The more awareness we raise, the more interest and money we can get for research! The more research we get the more lives we can possibly save.

It is simple.

We have no idea why kids get cancer, that’s why we need more research!!!

Children can be born with cancer and often are… Riley’s cancer is likely to have started growing whilst he was still inside my tummy.

So, what is it?

Until we have more research, we don’t know but, I do know it could happen to anyone. It happened to my child, it’s only rare until it’s you or someone you know.

Oh, before I forget, fuck cancer…..

CCAM

🎗 Do you know what Neuroblastoma is? CCAM. #ablogaday day30

justsophandriley

Neuroblastoma is a ‘rare‘ type of cancer that mostly affects babies and young children.

Honestly, I wouldn’t personally say Neuroblastoma is rare. I see so many Children’s Facebook & Twitter pages that are fighting Neuroblastoma. To me like 3-4 children is rare… not 50!

Neuroblastoma most commonly occurs in one of the adrenal glands situated above the kidneys, or in the nerve tissue that runs alongside the spinal cord in the neck, chest, tummy or pelvis.

It can spread to other organs such as the bone marrow, bone, lymph nodes, liver and skin.

The symptoms of neuroblastoma vary depending on where the cancer is and whether it has spread.

The early symptoms can be vague and hard to spot, and can easily be mistaken for those of more common childhood conditions.

Trust your instincts, see a medical professional if you have ANY concerns about your child’s health.

Neuroblastoma is relentless, it’s horrific. Childhood cancer can take your child in the blink of an eye.

Riley is my gorgeous beautiful strong brave son. His smile is amazing. He is just perfect! Riley was diagnosed when he was just 21 months old with Stage4 High risk Neuroblastoma. Survival rate 40%. 28|11|2014 🎗

Riley had 9 rounds Of chemotherapy. Lost his gorgeous blonde hair. 5 hour operation, stem cell transplant. Radiotherapy, immunotherapy and antibody treatment. All these treatments was a success!!!

After 21 months of treatment Riley was placed into remission!

You can follow Riley’s journey on Facebook!

Riley’s Journey

Hope it is a simple word

Used every single day

But when your life is full of doubt

It can be difficult to say

We hope that Riley doesn’t feel too sick

We hope he’s doing just fine

We hope he’s not in too much pain

We hope he continues to shine

Love it is a simple word

Used every single day

And when your life is filled with love

It can help make the pain go away

We love Riley’s spirit

His charm and his laughter

We love his smile that can light up a room

We love that so many people have supported him

In times filled with fear and gloom

Joy it is a simple word

Used every single day

And when you have joy within your heart

It’s easy to get through a tough day

We are filled with joy when the news is good

We are joyous and thankful and glad

And Riley’s smile is a joyful reminder

That you can be happy when times might feel sad.

CCAM

🎗N E U R O B L A S T O M A. CCAM #ablogaday

justsophandriley

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! He’s now been in remission for just over 2 years!! AMAZING!!! 🎗

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.

CCAM

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

justsophandriley

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.