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Bilbo's Journey - Childhood Cancer Awareness

Childhood Cancer Awareness Month 2019

September marks Childhood Cancer Awareness Month 2019. I want to use this month to write a little bit about what it means to be a family with cancer, reflect on the last year and raise awareness.

Childhood Cancer Awareness Month

In October 2018 Rich and I got really into the Stand Up To Cancer TV shows throughout October 2018. We enjoyed Celebrity Hunted each Friday and on Friday 26th October I bawled my eyes out when they featured Eve’s story during the advert break.

My words will haunt me forever as we watched, I commented to Rich through tears…

This has to be every family’s worst nightmare watching your baby suffer cancer, that poor baby girl.

Joining The Cancer Club

childhood cancer awareness month
Ickle Tickle with nanny to wind down for bed time, little did we know it would be another 3 hrs before he actually rested.

Little did we know that our beautiful little boy was asleep upstairs with cancer literally taking over his body, through his blood. And 3 days later our living nightmare began.

I wrote about how Bilbo was diagnosed here: Starting a new journey…

I will never forget the chilling words your son has Leukaemia and we went from a family on the sidelines of cancer, to living and breathing the cancer nightmare.

We were clueless about childhood cancer we didn’t have an ounce of understanding of what it truly means to be a family with cancer.

Why is Childhood Cancer Awareness Month So Important?

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This is what cancer looks like… a lot of waiting around. Instead of being at home snuggled on the sofa watching films we’re waiting to see if there are side effects from an injection. Instead of spending time together as a family our boys are split between home and hospital. Instead of walks along the canal or country park, we’re scheduling appointments and waiting for bloods. Cancer sucks, cancer ruins lives, cancer pisses on your chips!

There probably isn’t one person I know who hasn’t been touched by cancer.

But childhood cancer is a special kind of cruel joke. It doesn’t discriminate we’ve shared the cancer ward with newborn babies, toddlers, preschoolers and teenagers. A cancer ward is as diverse as it gets, families of every ethnicity and creed and from all walks of life.

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When I see him lying there I realise just how vulnerable he is.

Very quickly we had to learn to be a parent who’s child had cancer. It wasn’t something I wanted to learn and I resented every second. I don’t think I could have dealt with those first few days, weeks, months any differently. What i’ve come to understand over time is acceptance and another truly magnificent human wrote this about her own experience and it really resonates with me.

A theme i’ve endeavoured to focus on during these deeply challenging past months is that of acceptance. I’ve learnt both personally and through professional advice that in slowly adopting the concept of acceptance, traumatic circumstances will start to offer their own version of positivity.

Jo Saunders, Mother, Nutritionist, Cancer Mummy

We’ve learned to accept we are a family who has cancer, I still hate it and i’ve shared my pain and angst through this blog. Things I Hate About Cancer

But since the very beginning i’ve set out to share our story in the hope it will help another family. I hope to make people aware and let you know how you can help!

What Do You Need To Know During Childhood Cancer Awareness Month 2019?

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We had a visit from the very awesome charity Supershoes, they are hand painted one of a kind. Bilbo chose (big shocker) Lego and Dinosaurs.

Information taken from Childhood Cancer Facts and Figures

  • Childhood cancer is rare – around 1,600 new cases are diagnosed every year in the UK (in children aged 0-14 years)
  • This means that around one child in 500 will develop some form of cancer by the age of 14 years
  • Cancer occurs more commonly in boys than girls, by a ratio of around 6:5. This varies by tumour type; the most striking excess is in lymphomas, which boys are more than twice as likely to develop
    Different types of childhood cancer are more common at different ages.
  • Some types of cancer – including embryonal tumours (such as neuroblastoma, retinoblastoma and Wilms’ tumour) and acute lymphoblastic leukaemia (ALL) – occur most commonly in the under-5s.
  • Other cancers, such as bone tumours, are very rare in younger children, increasing in incidence with age and peaking in adolescence.
  • Around 250 children in the UK, aged 0-14 years, lose their lives to cancer every year
  • It is estimated that there are more than 35,000 survivors of childhood cancer alive in the UK. This number is growing by around 1,300 per year.
  • Leukaemia has an overall survival rate of 88%; within this, acute lymphoblastic leukaemia (ALL), the most common form, has a survival rate of 92% and acute myeloid leukaemia (AML), 69%

The Reality of Cancer in Children

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This is the reality of cancer. This photo shows the heartbreak, the fear. A big F you to cancer, I hate you for what you have done to our family!

For me the hardest thing to come to terms with is the suffering.

There is so much pain and suffering on the cancer journey. My heart has ached so hard not just for my gorgeous boy but for so many children.

We’ve witnessed suffering on our cancer ward. Strangers i’ve met on the internet who’s babies have suffered and for the mummy’s and daddy’s who’ve paid the ultimate price when they’re babies have gained their wings.

Our Childhood Cancer Awareness Month

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Photo taken at Cotswold Wildlife Park: Bilbo has never had his face painted, we’ve queued many times at fetes and he’s always changed his mind. He LOVED it and asked the lady in secret to do mummy. We are matching although i’ve got a little bit of purple and glitter because “mummy likes sparkles”

Over the next 30 days I am going to share stories about some amazing charities who are helping families like ours. I will get you started with Help Bilbo Raise Funds for Cancer #Donate4Bilbo but there will be more about other charities over the next 30 days.

I’m going to share some reflections on our own journey and I am going to share a post this month that isn’t about cancer at all because I want to remember that before October 29th we were a family that wrote about travel and I’m going take a little bit of control back from cancer and own that.

Since you’re here hopefully you will find some of our other posts useful:

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