CCAM

🎗Goodbye September. CCAM. #ablogaday

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.

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

🎗Imagine. CCAM. #ablogaday

Imagine.

Imagine, being told your child is seriously ill.

Imagine crying until you think there’s nothing left.

Imagine feeling like you’ve been punched in the stomach and wandering the corridors, as if your life was on pause for days on end, not able to comprehend what is happening.

Imagine signing a consent form knowing that death is an option.

Imagine having to hand over your child to surgeons for endless hours and waiting…

Imagine having to watch as your once active child isn’t even able to open their eyes for a week.

Imagine the terror…

Imagine the pain of having to leave your baby in the care of strangers and not being able to sleep by their side.

Imagine standing by as your baby’s body is pumped full of poison.

Imagine holding your baby while someone holds a mask over their face as they struggle in fright.

Imagine holding your baby countless times while someone sticks needles in them while they scream.

Imagine the guilt…

Imagine being told the percentage chance that your child might survive or leave you.

Imagine holding back the tears when your other child is carried away from you screaming “mummy” not understanding why you won’t come home.

Imagine watching as within two days your child loses all their hair.

Imagine losing all your independence and identity and just becoming someone’s Mummy.

Imagine not being able to leave the house for fear of infection.

Imagine not being to able to make any plans apart from hospital visits.

Imagine being stuck in isolation and not seeing anything but four walls for days on end.

Imagine learning a whole new vocabulary of words which is all you talk about anymore.

Imagine good friends being too uncomfortable to see you or speak to you anymore.

Imagine the loneliness…

Imagine perfect strangers passing comment about your son

But with the emptiness …

Imagine the kindness of strangers who don’t know you

Imagine the incredible support from people you’ve never met but know how it feels.

Imagine how special each cuddle is that you feel the need to memorise it.

Imagine the magic of each smile knowing that this smile was lost for weeks and now it’s back

Imagine how fragile and precious life feels

September was Childhood Cancer Awareness month, if I hadn’t told you, would you have known? It’s swept under the carpet as a taboo subject.

Imagine if it couldn’t be taboo in your world, because it was your world…

Imagine if I had known the symptoms,

Imagine if all GPs knew the symptoms,

Imagine if you felt you had the power to help others, not be in the same position…

Imagine… Don’t pity, don’t sympathise, just spread awareness and just imagine, because it could be you…

CCAM

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

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

🎗Do we hide the truth? CCAM #ablogaday

It strikes me that many aspects of children’s cancer are hidden from the general public, swept under the carpet because the truth is sometimes too awful to comprehend.

You know it’s actually worse than your worst nightmare. It’s just impossible to get your head around the fact that you child has cancer! It’s confusing at first. But, before you know if your an expert!

I was reminded of something recently that’s not often mentioned. The fact that our children are actually poked and prodded like bloody pin cushions with needles. They get covered in bruises which look awful at times, like tracks right up their arms.

Just imagine seeing your child like that. Covered in bruises from attempts at taking blood samples and just constant needles! They have blood draws, cannulas, ports, Hickman lines, feeding tubes, gastric tubes, bone marrow aspirates, injections & everything else!!

The children’s veins can collapse, often doctors can’t find viable veins. If the blood needs taking, it needs taking.

The thing I hated was when Riley needed to have G-CSF Infection as soon as he saw the nurse come in he’d know what it was for. It was painful for him. Made him scream in agony. It hurt him of course he was going to scream! Holding Riley’s legs firmly still so the nurse could do the injection stills sticks with me, I can hear his screams. The pain in his face. Things like this will never leave me.

Still, every different treatment Riley knee he needed it and didn’t complain.

See I have a massive fear of needles! Bet I sound like a bloody hypocrite… I watched Riley get prodded and poked constantly for 16 months. Some of the needles they can use on the children can be massive!