About us - Bilbo's Journey

Day 883: 500k steps from Milton Keynes to Devon

I shared in my last post that we were moving to Brixham. Day 833 – Dare to Dream. On the 1st March, we did it! We drove the 216 miles from Milton Keynes to Brixham, Devon. The last month has been VERY busy. We’ve adjusted to our new surroundings. The boys have started a new school. My mum has bought a house around the corner. We’ve almost unpacked. Rich, my mum and I have even been part of a team for Clic Sargent who’ve walked 500,000 steps this month. But most importantly we’ve finally reached the 1 year milestone. Bilbo’s chemo finishes in less than a year now 18th March 2021 we’re coming for you!

New Beginnings

It is official – we can now call Brixham home. From the moment we arrived on a glorious sunny day to sitting here writing in my new office, we’ve not regretted a single day of choosing to move down here.

We spent our first week in Brixham, getting settled, unpacked and exploring the area. We’ve immediately acclimatised into the much slower way of life. Helped by the fact most of the town was still very much on lockdown as was the rest of the country. We’ve used our daily exercise to explore as much of Brixham as possible.

The house is perfect and probably better than we even remembered it back in November when we put the offer in.

School

The boys new school has been phenomenal in helping them settle in. I am not sure if it is the combination of not being at school at all for 3 months or the fact they can see the sea from their new school but they’re so incredibly happy. Which makes us happy.

In particular this move has been the best thing for Bilbo’s confidence. He is in a smaller class with a mixed age, a combination of year one and year two. Bilbo’s new teacher is really pleased with his progress. Bilbo has worked incredibly hard during lockdown and his hard work has paid off. This wouldn’t have been possible without my mums commitment to home schooling, thank you mum!

Harrison is equally happy with his new school and teachers. He has told us he is missing his friends. I am not surprised he had a very strong bond with Eli and Ezra, so we have wrapped our arms around him a little more on those days.

500,000 Steps in March for Clic Sargent

Before we moved we’d signed up to the 500,000 steps in March with Clic Sargent. I wasn’t sure we’d made a very wise decision, and felt like we might have bitten off more than we could chew. BUT, I couldn’t have been more wrong. Having the challenge to complete was the perfect way to force us to get up and out exploring our new surroundings.

Every morning we walk the boys to school, then we’ve been taking a long route back home. Either around the Battery Park, The Breakwater or Berry Head.

We’ve investigated every set of steps and hills in the hope of finding one that is less horrific to climb.

We’ve explored in the morning, at dusk and even at night.

Brixham at night
Brixham at Night

On Sunday, my mum and I walked from Paignton to Brixham, it was stunning.

I have also discovered I really like walking – turns out this is the perfect place to enjoy that hobby.

Fun Fact: 500k steps is almost like walking from Brixham to Milton Keynes – who knew!

Clic Sargent

I am incredibly grateful we had the opportunity to do this challenge, Clic Sargent is a phenomenal charity who have (like many) been impacted financially by the pandemic. It is a double whammy because children and young people with cancer are having a much harder time because of the pandemic.

As I reflect on my early blog posts and about our own experience I can not imagine how we would have coped during Covid-19 in those early days. They’re continued evolution to meet the needs of families is why I continue to support Clic Sargent so passionately, they’ve had to adapt their services due to the pandemic. We need them, and so do the 5 families who will get a child cancer diagnosis today and tomorrow and every day.

Our whole team completed the challenge and between us we’ve raised £2.5k we’d love to get it up to £3k (who doesn’t love an even number) you can donate here: https://www.justgiving.com/team/bilbosjourney

How’s Bilbo Doing?

godberboys, godberstravel, bilbosjourney, #donate4bilbo, bilbosjourney, childhoodcancer, leukaemia, leukemia, maintenance, covid-19, Brixham, Devon Adventure
Bilbo the Brave

I wish I could sit here and write that he is doing really well. But unfortunately I can’t.

In some ways it makes the move a little bitter sweet…we have this beautiful new home and life. But the reality is our cancer shadow is currently pretty dark and suffocating right now.

My little boy broke tonight – I think it has all got too much for him and in turn it has got too much for me. He is currently asleep in my bed, mummy cuddles was the only tonic tonight and that is OK. That is what I’m here for.

What is going on?

Bilbo the Brave with Mummy
We’ve got this!

Following on from the blog post about Bilbo’s: Day 825: Cruel Cancer Side Effects the infection appears to be back. Or some sort of version of it. Before we moved the Paranychia was under control, his fingers and toes were looking better. But it was short lived. The new team in Exeter took some photos to get a baseline and as we were in and out over the next few weeks for check ups, bloods, Covid swabs and his lumbar puncture, he was getting small signs of it getting worse.

So Bilbo was put back on antibiotics. We know they work, but sadly they have grotty side effects for Bilbo, he gets tired, he gets an upset tummy and they make him have a brain fog.

After two weeks there is no improvement, in fact it is getting worse.

Friday we picked up a second antibiotic prescription to see if switching it up would help…6 days on he is even worse. Yesterday the oncology team swabbed, poked and photographed Bilbo to investigate further. I had a great conversation with his new team to think about how they can get to the bottom of it. To be honest I think his skin and reactions are leaving everyone a little stumped.

As I put Bilbo to bed he has cracked lips, sore hands and he’s shattered. He told me he is terrified he will miss his last day at school before the holidays tomorrow. Bilbo has routinely missed the last day of term so many times. We’ve also been in hospital as inpatient multiple times during the holidays. I’m doing my best to reassure him but I can’t make promises I can’t keep.

We all have our limits and I think our resilient, strong Bilbo the brave has reached his.

What next?

We should get the swab results tomorrow. Our oncology team are putting their heads together with the microbiologists and dermatologists to look at every avenue.

Needing so much support from our new team isn’t ideal because it means Bilbo is suffering. But I am confident that they will get to the bottom of it. Moving house was always going to be a challenge with our unique circumstances. Once again the NHS has proved to be phenomenal. Everyone we have met at Exeter has been so great. And as a mummy who’s currently very wobbly I need the reassurance more than ever.

New Life – New Adventures

Couldn’t think of a better person to start a new adventure with

The Easter break starts tomorrow and it is most welcome. It will be an opportunity for us to adventure a little further a field. We have some maps and books about the area ready for the boys to pick some places to explore.

The stars really did align for us with this move, I feel like the last 2.5 years have taken their toll and the universe has responded by giving us this opportunity to reconnect as a family and reprioritise.

So here is to our new life and new adventures, we can’t wait to share them with you.

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