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Bilbo's Journey - Childhood Cancer Awareness

Day 365: A Year Of Cancer

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A Year Of Cancer in Beads of Courage

In this post I wanted to reflect on a year of cancer. It was going to be full of insights into what i’ve learned…profound moments on our journey but as I began writing it turned into something else.

More of a post of record, a line in the sand to say we made it, we survived, we lived to tell the tale!

It feels like a lifetime ago, but it has only been 365 days since our beautiful little boy was diagnosed with cancer: Starting A New Journey. And I started telling our story.

The Facts

Bilbo was diagnosed with Acute lymphoblastic leukaemia (ALL)

Acute lymphoblastic leukaemia is a type of cancer that affects white blood cells. It progresses quickly and aggressively and requires immediate treatment. Both adults and children can be affected.


Acute lymphoblastic leukaemia is rare, with around 790 people diagnosed with the condition each year in the UK. Most cases of acute lymphoblastic leukaemia develop in children, teenagers and young adults.


Although it is rare, acute lymphoblastic leukaemia is the most common type of leukaemia that affects children. About 85% of the cases that affect children happen in those younger than 15 (mostly between the ages of 0 and 5). It affects slightly more boys than girls.

https://www.nhs.uk/conditions/acute-lymphoblastic-leukaemia/

He was diagnosed on Monday 29th October, the day our lives changed forever.

A Year Of Cancer: The Numbers

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In the last year Bilbo has had:

  • 1 ambulance ride
  • 182 chemo treatments these have included: IT MTX, IV MTX, Oral MTX, Doxorubicin, Pegaspargase, Vincristine, Cyclophosphamide, Cytarbine, Daunorubicin and 6MP
  • 52 weekends of antibiotics
  • 9 nights in hospital
  • 3420 miles to and from Oxford
  • 5 bone marrow aspirates
  • 12 Lumbar punctures
  • 2 surgeries
  • 8 blood and platelet transfusions
  • 15 anaesthetics
  • 47 community nurse visits
  • He lost his hair twice
  • 43 dressing changes
  • 49 doses of steroids

A Year Of Cancer: The Good

In those early days so many of you wanted to help and over the last 365 days collectively we’ve done so much good. #Donate4Bilbo

You’ve donated pints and pints of blood through Giving Blood

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Uncle Gaggin gave blood this week.

We’ve raised £11,682 for Clic Sargent

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Grandma and Grandad in Nottingham shaking their buckets.
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We had a little competition going to see who could raise the most money. Hands down these boys won!!! Well done Nikeal and Jayden. And mummy!

And almost £2k for The Henry Allen Trust

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Gorgeous Henry and his AMAZING mummy Dawn
https://thehenryallentrust.org.uk/

How It All Began

365 days ago our lives were normal, on Monday 29th October, I didn’t shower because I planned on trying to fix our hoover. I’d rung 111 the night before and I’d got an appointment for 3:30pm to see our GP. Apart from a very tired, pale little boy on my sofa it was a very boring, very normal day.

Whilst Bilbo slept on the sofa I pottered. Not a care in the world…just somewhat irritated by the fact my £300 hoover had stopped working properly after 6 months (Don’t EVER buy a Dyson)

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Monday 29th October after walking his brother to nursery (5mins round the corner) Bilbo just wanted to sleep. I had no idea when I took this photo to send Rich just how poorly he was. Within 12hrs we’d have our cancer diagnosis.

And that is the difference between now and then. Back then childhood cancer meant little more than what i’d seen on adverts, StandUp2Cancer or documentaries. It moved me to tears but I had no clue just how fucked up it really is.

I had no idea! when I was told to take Bilbo to the assessment ward at hospital and swung by the house to grab a charger and some pumpkin cake that when I returned 3hrs later I would be packing bags for Bilbo and I to be transferred by ambulance to Oxford.

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Waiting patiently to see a doctor. I remember vividly seeing so many poorly children and thinking I was wasting the Drs time, that he just had a virus.

There is no way I would have believed you if someone had said the virus I thought Bilbo had would in fact be the big C word.

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And this was taken once they’d settled him into a bed in Oxford. I can’t tell you how utterly terrified I was as I took this image. It was 1am, I was on my own with only a phone and the humming of machines for company. For parents facing this moment, it won’t be easy but you will get through it!

A Year Of Cancer: Everything Changes

And so when I sat in the waiting room and the Dr uttered the words, your son has Leukaemia….from that moment on nothing has ever been the same again.

Our lives changed forever and I can tell you 365 days later, i’ve changed, I have changed beyond recognition and I will never be the same again.

Whether i’ve changed for the better remains to be seen, but i’m definitely different!

And what i’ve learned over the last 365 days is that cancer is as scary and horrific as you can imagine in your worst nightmares. And when it is your child that is suffering…well there are no words that capture how that feels.

What i’ve also learned is nothing will ever be as scary as my child getting cancer, if I can stare it in the face and come out the other side I can do anything.

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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!

Gratitude

There are so many people we need to thank collectively and as individuals. For fear of offending anyone I won’t list off everyone who has been there for us. You all know who you are and we are eternally grateful.

I will though share a mountain of gratitude to the NHS. To every health care professional who has done their bit to keep our son alive, comfortable and entertained.

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Bilbo asked the poor doctor lots and lots of questions including “why do people die” he was awesome managing a very curious mind.

Our gratitude extends to the cleaners of the wards who understand the importance of keeping the environment clean, the ward support who help make everything just work. Making sure we’re well cared for, the fridge is stocked, helping silently in ways you can only imagine.

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Bilbo needed another transfusion of the red stuff. A HUGE reminder that blood is always in need, if you can please give blood. #donate4bilbo

The play assistance who’ve helped us keep Bilbo entertained through long treatment days and tricky steroid days.

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Today in the Kamran ward we had some visitors.

The nurses every single one of you. At Oxford and Milton Keynes. Your patience, love and care for our little boy has been heartwarming. Thank you for listening to my worries and concerns, our highs and our lows.

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And here is Bilbo having his last vincristine chemo, whilst casually chilling with his daddy’s iPad.

And finally the Dr’s and consultants. How you know every detail of treatment plan, our protocol and Bilbo’s personality blows my mind when you (sadly) see literally hundreds of children.

We are grateful for every single one of you!

A Fresh Start

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Second attempt at a family photo…

So for every down day, or day i’ve felt fucking terrible, or low, every moment where i’ve been thoroughly depressed and wanted to hide under a duvet and not face being an adult.

There will be a hundred more days where I know I can take on the world. And I am starting right now.

Last night I signed up to the London Landmarks Half Marathon, the race is on the 29th March in 152 days. I will be running for The Henry Allen Trust. And at lunchtime today I signed up to a gym, I have a training plan and I’m ready to run, run, run!

A Year Of Bilbo’s Journey

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No words…just LOVE!

In that first week I made a very conscious decision to start writing this blog.

I am grateful every day that I did because it has helped me no end. Writing has been cathartic. When things were so fogging and messed up I know I have a record of Bilbo’s Journey.

I know that what I have written is personal, but every time another cancer parent reaches out on facebook, instagram or via this website. It is another reminder it was worth sharing my pain. If it helps just one other family.

And as we head into year two i’m hoping that I can start writing a little less about cancer and a little more about life as the Godber family, living the shit out of life.

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2 Comments on “Day 365: A Year Of Cancer

  1. It’s great you’ve set this personal goal of the half marathon, I guess , doing this for the foundation that inspired, helped and supported you and you family over the passed year is definitely going to be a great motivator.
    I wish you and you family will grap the chance of living the shit out of life. have fun doing so.
    From your BE WOL-mate.

  2. Kim, I’m pleased to read that things are looking up and really wish they stay like that. Good luck with the running!
    Mieke xxx

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