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Bilbo's Journey - Childhood Cancer Awareness

Day 1193: Young Lives vs Cancer and World Cancer Day 2022

young lives vs cancer, hope looks good on you
Today on World Cancer Day we are full of hope, hope because we are so close to the finish!!!

World Cancer Day Past and Present

World Cancer Day is about sharing the real world impacts of cancer. There still isn’t enough funding for cancer research and there isn’t enough support for families fighting cancer at all stages and ages. Charities like Young Lives vs Cancer plug the gap and World Cancer Day is an opportunity for us to all play a role in fighting against this awful disease.

World Cancer Day is an important reminder, cancer doesn’t discriminate. Cancer affects us all.

By raising worldwide awareness, improving education and catalysing personal, collective and government action, we are all working together to reimagine a world where millions of preventable cancer deaths are saved and access to life-saving cancer treatment and care is equitable for all – no matter who you are or where you live. 

https://www.worldcancerday.org/about-us

Cancer Treatment Ends in 41 Days

We are just 41 days away from Bilbo finishing his cancer treatment.

We have one more lumbar puncture, he has one more chemo clinic and only a handful of finger pricks to draw blood for testing left.

The fear of losing the guard rails is incredibly real. The protocols, the appointments, the medicine – they are part of the rituals that mean we’re doing something. But once the treatment stops we’re on our own.

Except we’re not. We’re not alone because charities like Young Lives vs Cancer exist.

Young Lives vs Cancer

godberboys, godberstravel, bilbosjourney, #donate4bilbo, bilbosjourney, childhoodcancer, leukaemia, leukemia, a year of cancer
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!

Young Lives vs Cancer have been there since day one…

So, let me tell you a bit about our experience and why they are so important to us.

On the day Bilbo was diagnosed we travelled to Oxford from Milton Keynes in an ambulance. I had no idea what was in store. My mind was racing. We were literally signing Bilbo’s life away through consent forms.

I didn’t understand the cancer shorthand, I didn’t know what a regimen or protocol was. The medical jargon, the different medicines. I had no clue what 3.5 years of treatment would really look like for our family. My 5 year old baby was incredibly sick and my 2 year old was at home with no idea where Bilbo and I had gone.

I had a job, I had voluntary commitments, we had holidays booked! Making sense of the situation didn’t compute. I didn’t know how to live in a room in a hospital, everyone kept asking me what I needed. I didn’t have a clue.

And then I met Sarah.

Sarah Our Social Worker

Sarah was one of many many people coming and going through the revolving door that was our room. (I know this isn’t the reality now with Covid) but she was different. She started by asking the right questions. How are you? is now a good time to talk? It was and we did. She listened while I offloaded.

What Sarah did was help me gather my thoughts and start to think about how she might be able to help. And Sarah was there throughout the early days of treatment helping us navigate our new world. A friendly face and sounding board. And I am incredibly grateful for her and her support.

What does Young Lives vs Cancer do?

DESPITE IT ALL, #EVERYWINMATTERS, THIS WORLD CANCER DAY
Hearing you have cancer when you’re a young person is life shattering. And dealing with it during a pandemic makes life even harder. Band together with young people this World Cancer Day as they share what they’ve achieved in the face of cancer and Covid-19 – from stepping out of bed to stepping on stage. Because, despite it all, every win matters.

Young Lives vs Cancer offer a range of services and support and what they recognise is every young person or families needs are different.

The Six Ways Young Lives vs Cancer Helps

  1. When the doctor says cancer
  2. Cancer Costs
  3. There’s no place like home
  4. We help them thrive, not just survive
  5. When a child dies
  6. Making change happen

You can read more about these six areas here

Supporting Young Lives vs Cancer

In those early days friends and family were asking how they could help we set up a donation page for Young Lives vs Cancer, to date we’ve raised £12k through GoFundMe.

Over the last 3 years we’ve joined in on the many fund raising activities. Bilbo was the face of their Christmas campaign in 2019. Read the full story here.

Young Lives vs Cancer
Bilbo in the 2019 Young Lives vs Cancer campaign, Pebbles the bear still comes everywhere with us.

We did the lockdown challenge in our garden in 2020. And we walked 500,000 steps in March 2021 along with many of friends and family. Some of our supporters have also done challenges in Bilbo’s name and added to the pot. Raising money was important but being part of the community and doing something especially during the lockdowns helped us enormously.

When we signed up for the step challenge we joined an amazing group of strangers all cheering each other on. Huge kudos to the community managers on Facebook who run these challenges, they’re amazing!

Broadsands Ice Cream Stop
On one of our walks getting our steps in.
500k Steps for Clic Sargent
This is the bag Sarah gave me the day I met her, I’ve used it for every hospital visit. I call it my Mary Poppins bag and it holds everything we need, chargers, hand sanitiser, snacks, electronics, changes of clothes, you name it you will find it in my bag!

Behind the Scenes at Young Lives vs Cancer

It was also important to me to understand how Young Lives vs Cancer spend the money we raise. If I was to keep asking you to dig deep I needed to feel confident your donations were spent carefully.

I have been lucky enough to see behind the scenes on many occasions. Over the last few years I have used my Pearson volunteer days to support Young Lives vs Cancer. I have used my time to speak to new joiners, I’ve been a part of an interview panel for a board position and I offer feedback as a parent of a child with cancer to support their lobbying efforts.

Every interaction I have with the team is rewarding. I get to see first hand how the team operates, how they are supporting young people and families. I have also seen the care they place on spending your donations.

Young lives vs Cancer have been seriously impacted by Covid. Social workers now have limited access to hospital wards. The Homes from Homes have had to adhere to Covid rules. And the worst part, many of the fund raising streams dried up. No shaking buckets at Morrison’s, no fun runs, 5 and 10km’s, half and full marathons. Cancer didn’t stop for Covid.

Throughout the pandemic Young Lives vs Cancer have been innovative and creative as they’ve faced tough challenges.

I can hand on heart say that every penny we’ve raised has been used carefully and wisely.

Can you help one last time?

We have raised an incredible amount of money for Young Lives vs Cancer but I know that in the final days of Bilbo’s treatment we might be able to nudge it up a little bit more.

I would love to know that despite our cancer journey nearing its end the legacy we leave behind is being able to help many more families like ours.

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