Cancer Life

How I Wish People Saw Riley’s Bald Head.

One thing that used to upset me the most when Riley was going through his treatment was the way people used to look and stare at him when he was bald.

Tell you, it used to make my blood boil. It’s not even like they used to take a look and look again it was a full on stare. All eyes on him. I could always feel myself boiling inside getting ready for the next person to stare at him for me to let go all my anger.

Of course, people think it’s sad that a child has cancer. It’s not sad, that child is fighting cancer. To them it’s the hardest battle they have to face. The day you walk past a child with no hair is another day that, that child is winning!

I finally decided to shave Riley’s hair off in December because his hair was starting to fall out, just two chemotherapy sessions into his treatment plan. I woke up one morning at the hospital and found little blonde hairs on his pillow. That’s when straight away I hoped the chemotherapy was working.

Thankfully Riley didn’t loose his eyelashes, he has the most beautiful long lashes…

After 7 sessions of chemotherapy and whilst waiting for surgery Riley’s hair started to grow back. It was very very very blonde. Was only like this until it fell out again during high dose chemotherapy. His surgery was in March and his high dose chemotherapy started in April. One month apart.

After 21months of treatment Riley now has light brown hair.

For a 4 year old Riley has never asked questions when we have seen other bald children in clinic or on the ward. When I ask Riley why didn’t he have any hair he just says because he was poorly but he’s all better now.

Riley knows he was poorly and he knows he had cancer but he doesn’t know what kind of cancer or all the treatment he’s had. He will know more about then when he’s old enough to understand…

I wish having hair didn’t mean healthy and been bald didn’t mean sick. I wish bald was a sign of an strong fighter winning a battle. I guess all I can hope is when children ask their parents questions, the parents respond with uplifting comments of hope..

I know people are going to talk and stare but please don’t. Smile! That child has a battle they shouldn’t have to face. Smile and know they are brave! They look beautiful without hair.

I used to always put a hat on Riley whenever we went out but he always took it off. Which I don’t blame him to be honest he was proud of his bald head! He showed it off! I will always be so proud of him.

When Riley was diagnosed with cancer Alice (his auntie) more ales decided straight away that she wanted to have her head shaved and donate her hair to Little Princess trust LittlePrincessTrust

Which she raised over £2000 for for candleligjters the charity that supported us and Riley throughout his treatments Candlelighters

Want to follow our journey even more? Follow us on Facebook. www.facebook.com/rileysjourneyxo

Cancer Life

🎗 World Cancer Day 🎗

638days, 21months. This is how long Riley thought Cancer for…

Today is world cancer day. I was told the 4 words no parent ever wants to hear. Every parents worst nightmare.

28|02|2014 was the hardest day of our life. The day I was told Riley had cancer, the day Neuroblastoma walked into our lives and every parents worst nightmare had begun…

  • 7 chemotherapy sessions.
  • 5 hour surgery to remission be the tumour in his adrenal gland.
  • Stem cell harvest.
  • High dose chemotherapy.
  • Stem cell transplant.
  • Radiotherapy.
  • Immunotherapy.
  • Antibody treatment.

Every part of Riley’s treatment was difficult for him but he did it with a smile on his face.

In March 2016 we was told amazing news, Riley’s was in remission. No sign of cancer anywhere. Riley had well and truly beaten cancer.

Riley 1 – Neuroblastoma 0!

Today I am thanking those people who saved my sons life. Im remembering all those we lost along the way, those still fighting and those who survive. No matter how well Riley looks today, I’ll never forget him laid on his hospital bed with no energy…

#WorldCancerDay 🎗💖

Cancer Life

What I wish I’d told everybody when Riley was diagnosed.

” Friends, Neighbors, Acquaintances & Facebook…

My child has been diagnosed with cancer, Neuroblastoma. We’ll be in the hospital for months during treatment. Which means away from home. I know this might shock and upset you but cry with me not for me.

I love that your thoughts are with us even if I don’t reply to your texts or messages. As of this minute I don’t have the answers to your questions…

Until I set up a page to make updates too you all, I’ll be posting one Facebook status every few days. I’ll be telling information to close family who can then pass on the information to other people as that will be easier for me.

If you want to help, please go ahead and make some quick meals for us to warm up in the microwave as that’s what we’re going to be relying on in the ward. I have to stay with him at all times & although I’m staying on the ward I’m not provided any meals. Oh and a gingerbread latte would be nice too. Try and have a somewhat normal conversation with us. Want to come visit us, please do it. The ward is so friendly.

l will be tired. So mind blown. In shock and scared. I would love if you visited even if I don’t talk much, my mind will be thinking over time about what’s going to happen to him. Maybe you could watch him for 10 minutes so I can get some fresh air or a quick shower?

I will have very limited sleep as the beeping of the IV machines will be going off every 2 hours during the night for more fluids and chemotherapy. I will have limited access to WiFi, food, technology & essentials.

Thank you so much for understanding & sending your love. ”

From a parent who child now has cancer.

 

 

 

Daily Life

Giving Cancer The Finger.

 

This year we are giving cancer the middle finger!

2018 isn’t going to be about cancer or neuroblastoma. its not going to get the attention it doesn’t deserve.

2018 is time for Riley to learn lots of new things and to have more adventures. Everyday he wakes up with a smile on his face showing cancer it didn’t win this battle and its not about to destroy his day.

Riley knows he had cancer but he doesn’t let that beat him so why should we let cancer be so focused on in 2018? We shouldn’t! 

We know the side effects from his treatment will be there with us daily regarding his physical development & his ears but that is something we are dealing with now, sooner rather then later in the year. We’ve just got an appointment sorted out for ENT next week!

We’re going to make lots more memories. Try lots of new things. Adventure further and laugh so much more then we have done before.

2018 also marks 2 full years in remission which is obviously amazing!

We’ve focused our lives on cancer so much these past 3 years, with Riley having all his different treatments, tests & scans in between them & then waiting for the results. It gives you the worst anxiety you ever have to experience. Don’t get me wrong the anxiety is probably always going to be around tests & scans because you will never know what they’re going to show.

But! 2018 is going to be a good year. No more negativity, its time to laugh, smile and enjoy life. Life without cancer for a change.

So here’s to 2018. The year we give cancer the middle finger!

soph&riley xx

 

 

Daily Life

Another day, another ear infection.

Riley has been up most of the night in pain with his ears… just over a year now Riley’s been getting perforated ear drums & ear infections especially in his right ear.

hes had a number of hearing tests & gromits have been mentioned s number of times but we’re still inpatiently waiting. every few weeks he’s st the doctors with another problem with his little ears. tbh actually the last time I took him just before Christmas they said it wasn’t a perforated ear drum (his ears was clear) she thought it was just a nasty infection but his ear was leaking wax as the same as a perforated eardrum. Riley was in loads of pain and only thing I could give him was calpol..! i mean… what?

but this is just something that might have been coursed by his cancer treatment I honestly don’t know. I know slot of Neuroblastoma children do suffer from bad ears. so maybe it is but also my dad had slot of trouble with his ears when he was younger like Riley. He still has trouble now. So maybe it might be something generic? I honestly don’t know?

well riley is at the doctors on Tuesday after school so hopefully something will be done to get these nasty ears sorted once and for all. can’t carry on like this! not fair on riley to be in so much pain.

anotber day, another infection. surely this can’t go on?