🎗The last day of September. CCAM. #ablogaday

So today is the last day of September.

The last day this year of Childhood Cancer Awareness Month and GO GOLD for September!

It isn’t the last day for the families of children with cancer. Our fight continues.

The families that worry every day during treatments, hoping for the best outcome. The families that are living with the heartbreak of losing their child to cancer.

GP’s needs to become aware of the symptoms so they can be picked up quicker! Parents need to recognise and educate themselves on the symptoms of Childhood Cancer!

This is where it becomes personal.

Before Riley was diagnosed, he walked into our baby gate about two weeks before and had a small back eye. A week later this black eye was still there. I had taken Riley to the doctors. Due to him getting this small lump on his eye. I was told it was a ‘cyst‘. The following Sunday Riley was crying, in a lot of pain, sleeping a lot, not eating and looked to have lost weight! Me and my mum took him to our medical centre were again we was told it was a cyst.

About a week after I took Riley to be weighed. His weight was fine but the health visitor told me to take him back to our medical centre before Riley had started with nose bleeds. They refused to see him and told me to take him to A&E!

Me and my mum took Riley to A&E where again we were told it was a cyst and worst case would be surgery to remove this cyst. Riley spend 3 days in hospital on a drip – antibiotics. When we were discharged we had a eye appointment booked for the following day. Makes me think now, did they actually know and didn’t want to tell me? Or was this something that they were just doing?

The following day. Thursday 27 November Riley was in such a good mode, he was smiling and laughing, we went for the eye appointment were the doctor did all the checks on Riley’s eyes. The doctor didn’t look happy, he wanted Riley to go for a CT scan at the hospital. So off we went. I didn’t think anything was wrong at the time!

Later that evening Riley had to CT scan, he was put to sleep for the very first time which was absolutely heartbreaking for me and thank goodness my mum was there because I honestly don’t know what I would have done. This wasn’t something I thought would ever happen… Me and mum sat outside the CT room. It was awful. One of the doctors came out after about 10-15 minutes and got straight on the phone to somebody. He looked shocked! I think my mum probably knew something wasn’t right then. She didn’t say anything to me because she didn’t want to upset me.

That night I laid in the hospital bed watching Riley sleep. I did the worse thing you could do and I went onto google! ‘Small lump on toddlers eye’ ‘lump on toddlers eye‘. It did come up with cyst but it came up with cancer! I put my phone down and thought cancer? He won’t have cancer he’s only a baby.

The next day came and Riley was having a little drink of juice. The nurse came and said the doctor would be coming to see me soon. The doctor came and we went into a room. Why’s he taking me into a room? Why couldn’t he just tell me? Sat down with Riley on my knee. The doctor sat down in front of me ‘we’ve found a lump on the CT scan’. What I was told was a cyst was actually a tumour! It was cancer!

Is he going to die I said? The doctor didn’t answer. My mum came into the room and I told her. We were shocked, we were upset, our world had just been crashed down in front of our eyes.

Before I knew we was been sent for X-rays, ultrasounds etc, then we was meeting an oncology children’s nurse, oncologists, surgeries, doctors, I was signing consent forms for Riley to have a Hickman line fitted and the tumour on his eye removed!

Stage 4 high risk Neuroblastoma Riley was diagnosed with. He had a big tumour in his adrenal gland, it had spread to his bone marrow, he had a small tumour at the side of his head. He had 40% chance of survival. Nobody could tell me if the treatment would work, nobody could tell me if he would die.

Riley started chemotherapy on the 4th of December. After 3 cycles of chemotherapy Riley had different tests and scans to see if the cancer had gotten smaller. Unfortunately the cancer hadn’t gotten any smaller which wasn’t good news! So continued with the chemotherapy we did.

After the full 7 cycles of chemotherapy Riley had the tests and scans again! This was the worst waiting game ever. Amazingly Riley’s tests results were good! The chemotherapy had worked and the cancer was smaller! Riley could have surgery. The surgery that could actually save his life.

On the 8th of March 2015 Riley had the surgery. 5 hours he was in theatre and the tumour was removed. As well as one of his adrenal glands.

In April Riley had his Stem Cell transplant which made him extremely poorly. He spent 5 days in intensive care with sepsis. We spent a long emotional 9 weeks in hospital during this treatment.

June Riley started radiotherapy which was by far the easiest to deal with.

After that Riley started his last treatments, immunotherapy and antibodies treatment. This went on for a long 6 months!!!

After the treatment finished, Riley had all his tests and scans again which was massively emotionally draining for all the family.

March 2016 we was told the most amazing news ever! Riley was in remission! All his tests and scans were clear! My boy had done it! He was clear, no sign of cancer! I was so proud! I was so happy and you know I actually thought I was restarting my life with a 3 year old!

This is where the awareness has to start.

You get told to check you breasts, check your prostate, check you testicles!

With childhood cancers why do we not check symptoms?…

We have an amazing NHS!! Without it, we would have medical bills in the hundreds of thousands for Riley’s treatment! The nursing teams we have are wonderful!

As parents of a children fighting Childhood Cancer all we ask is for more awareness of early symptoms, better funding into research into treatment more suited to children, rather than one fits all!

#FUCKCANCER

#GoGoldforSeptember

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🎗 Thirty days is ending. CCAM #ablogaday day30

Thirty days is ending, the time has passed with ease. Yet more lives have been stolen by this vile beast.

More children it has taken, ripped from loving arms. Leaving pain and guilt behind in those that sought to keep them from harm.

They suffered with families, they suffered on their own. The innocents have suffered too much in a cold room far from home.

Questions go unanswered… “why is there no cure?” Grief is gently hidden, shut behind a door.

It’s said they are our future yet there are no plans it seems. No way to protect our children so they can see all yet to see.

Money spent so needlessly, but no one is set to pay. Who will stand and shout for the young ones as their lives slip away.

Too many rooms unopened, where parents cannot thread. Too many empty chairs, too many children dead.

How many even know the routines? Tears and dread. How many are aware of being gathered around a bed.

A month is passing by. We have shared what we know. It will be on our lips everyday not just when the time of year says so.

When will we start acting? We say they’re our whole life. When will all become aware? Stand together and say “this isn’t right!”

Look upon your babies. Listen to them breathe. Imagine standing all in black as a family that grieves.

It’s easy to ignore because it’s not happening too you. But now, you can not say you didn’t know…

Today is the last day of September which means it is the end of Childhood Cancer Awareness Month too. Well it’s the end for you. But it will never be the end for me and many more oncology parents out there. We raise awareness everyday!

Next time you see a post on Facebook, twitter, Instagram and even on here please take 2 minutes to read. Please make sure you know the sign and the symptoms of Childhood Cancer.

Make sure you kiss your child goodnight.

Riley, I love you. You are so strong, so brave and a fighter. You make me so proud everyday🎗

Hope, dream, believe.

🎗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…

🎗 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.

🎗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!