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CCAM

πŸŽ— 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.

It’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…

CCAM

πŸŽ— 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…

CCAM

πŸŽ— The long term side effects. CCAM #ablogaday day14

Even when you have been in remission for a few years you can still struggle with the side effects from the treatment.

After Riley finished all his treatment and was placed into remission in March 2016 he still suffers from side effects because of the treatment.

In May 2016 riley was having dizzy spells and low blood sugar. He was tested for dieabeaties which came back it wasn’t. Riley just needs to eat every 3-4 hours to keep his blood sugar levels up.

Towards the end of 2016 Riley was having a lot of pain with his teeth. We was going to the dental hospital every 6 weeks for a check up. After going backwards and forwards for months and months and months I finally got them to listen. Still in December 2016… They decided Riley needed some teeth out and some fillings. 6 teeth they originally told me he needed out. Well a year past and we was still waiting. Back in September 2017 again they told me he needed teeth out, just 4 though this time! What a relief it had gone down. Well in April 2018 we had an appointment again. Just another check up for the millionth time! They finally listened to me moaning about how long it had taken to get an actual answer from them about what was going to happen with Riley’s teeth. He was in pain, his gums were bleeding when we was brushing his teeth and to be honest we felt like we was just getting messed around.

Riley actually needed a lot of dental work doing, he had cavities, some of his teeth had rotten away because of the high dose chemotherapy. I signed the pink form and agreed for Riley to have dental surgery. 10 teeth Riley had out in the end! His teeth had rotten away. His 4 little top teeth. And 4 teeth at either side. 10 teeth at the age of 5! His beautiful smile changed. His little teeth gone. Worst thing is, the surgeon didn’t take notice of the chemotherapy Riley had had, They tried telling me it was the juice he’d been drinking.

When Riley gets poorly and gets pale his eye where the a tumour was still gets like he has a black eye which is scary and always make me panic because that’s how his cancer started, a little black eye. That’s when I knew something wasn’t right. it always makes me panic, is his cancer back, I it round 2?

Riley also suffers with bad eac infections which most neuroblastoma children do. He has had lots of perforated ear drums that have caused him so much pain, he’s cried himself to sleep a number of times because of the pain! Hes lost out on being at school because of his ears and in May 2018 he had some grommets fitted which are working perfectly for him right now!

Riley also struggles with his mobility, some days are worse then others and some days he is amazing. We use his wheelchair a lot now. He gets tired when he walks. We live less then 5 minutes away from a shop but even that sometimes is too much for him on a bad day. He tries his best to keep up with his little friends. We see the phisco every now and again when were in clinic for a catch up but we take each day at a time!
Riley has taught me so much being his mum. We don’t take things for granted and he has showed me how strong a person can really be when faced with a life changing fight!!!

CCAM

πŸŽ— All those side effects too… CCAM #ablogaday day13

img_4455Side Effects!!! There another thing to worry about!!
Riley had a number of nasty side effects. he had so many infections, his skin changed, his hair fell out. diarrhoea, his taste changed, PAIN, sickness, mobility issues, hearing problems, mucositis, became neutropenic and dental problem.
Riley suffered with really bad mucositis when he had his stem cell transplant which sometimes cause him difficulty swallowing. We used to have to swab all the mucus and thick saliva away, we came abit of a pro at it towards the end. He wasn’t able to eat or drink much either in this part of his treatment so having the mucositis made it a lot worse.
When Riley first started his chemotherapy he became Neutropenic which is common as the chemotherapy kills the cancer cells but it also kills the healthy cells too! Neutropenia can also put you at risk of life threatening infections like sepsis! Riley got sepsis and spent 5 days in Intensive Care! Once Riley’s temperature would hit above 38 degrees it meant it was time to get in the car and make a trip to the ward ready for Riley to be hooked up to IV antibiotics again. You think once your discharged from hospital that’s it but as soon as that temperature spike it was straight back to the hospital again.
Riley has suffered badly with his mobility because of all the treatment, he cant walk far. We now have to use a wheelchair as he gets tired from walking and he gets pain in his legs. He tries to keep up with his friends as much as he can, he doesn’t let this stop him from jumping around and having fun at his favourite play area!
And as you know Riley not long ago had 10 teeth out because of the chemotherapy. We wont know until his adult teeth start to show if they will have rotten away as well. Like everything else we will deal with it when it comes too it!
Riley’s taste changed so much! He adored Yorkshire puddings and couldn’t wait for Grandma to bring him some too the hospital on a Sunday! He loves ice cream, cakes and all the sweet stuff but he grow a massive love for FRUIT! We was always running backwards and forwards to the kitchen for bananas and apples for him!
Even though Riley has had many problems he has taken it all on with a smile, he’s laughed, he’s enjoyed life and he’s filled so many people with hope!
I’ve asked Riley consultant a few times what other side effect might he have in a few years and Liver, Kidney and Heart problems are a possibility. Also Fertility problems which we will deal with when it comes to that.
#CCAM #ChildhoodCancerAwarenessMonth #GlowGold #GoGold #BeChildhoodCancerAware

CCAM

πŸŽ— Your heart. CCAM #ablogaday day11

Just being told your child has cancer your entire heart breaks.

Having to kiss your child goodbye as they are wheeled into theatre your entire heart breaks.

Having to hold him down as they try to take blood for the 4th time your entire heart breaks.

Holding a vomit bowl whilst rubbing his back as he throws up after another bunch of poison pumped into him your entire heart breaks.

Noticing his hair on his pillow your entire heart breaks.

Hearing of another child going to play with the angels your entire heart breaks.

Having him look up at you while he enjoys his fave food your heart starts to heal.

Hearing him laugh and seeing him smile your heart starts to heal.

Seeing him run around at home your heart starts to heal.

Hearing him say β€œI love you mummy” your heart starts to heal.

Cuddling up on sofa watching his fave programme your heart starts to heal.

The consultant saying “good news, scans are all clear!” your heart starts to heal.

Childhood cancer is not rare.

Its never the exact same story for every child. Each child takes a different path, each child’s cancer story has a different ending.

No cancer is the easy one, every one has the same effects, your entire heart breaks, your heart heals.

For some it never does heal but for every parent their heart will never beat the same again…