Day 118: Living Our Best Life London’s Calling

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Bilbo loving life in the Lego store.

It has been 8 days since i’ve written anything. Bilbo has spent 3 days in hospital and we’ve had a pretty tough time. BUT I didn’t want to write yet another post about how crap things are. So I didn’t.

Today has been PHENOMENAL Bilbo and I have had the most wonderful day out in London – i’m buzzing, i’m so happy and we’ve enjoyed some level of normality. Today has been a HUGE distraction from what we are still waiting for the MRD.

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
He was on top of the world but went down hill very quickly, about 2hrs after this photo was taken we were on our way to Ward 4 at Milton Keynes hospital.

How’s Bilbo doing?

We’ll get the update on all things cancer out of the way.

If you recall Bilbo has been having a pretty miserable time I wrote about it in Mother of All Meltdowns. His taste had been off for a few weeks, he’s been nauseous and has generally not felt great.

Half Term Fun in Short Supply

Despite not feeling great I was determined to enjoy half term with Bilbo. We had a whole week mapped out.

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
Half term fun finding out all about fossils and dinosaurs.
godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
Checking out the Tesla cars, the first thing he did on the big map was look for his school.

We managed two days of half term fun, before we ended up in hospital.

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
Bilbo was fine one minute and within an hour he wasn’t very well at all. This is why I check his temperature neurotically and when it goes over 38 he needs to go straight to hospital.

It came on so quickly which was pretty scary. But in true Bilbo style it also passed pretty quickly too. However the rules are he needs 48hrs of IV antibiotics. And so we dug in for the long haul.

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
When in hospital we make Lego and Daddy works in the corner.
godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
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.
godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
Even though he was thoroughly fed up he was still smiling (most of the time)

I’m sure over our cancer journey there will be multiple hospital stays. And i’m grateful it wasn’t a complex one.

We were even able to leave before the last dose of antibiotics to enjoy some winter sun on the promise we’d return at 6pm for the last dose.

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
After being allowed out of hospital for good behaviour we made a dash for it. The weather was good so we were able to feed the duck and bonus Grandma and Grandad got to hangout in the fresh air and not at the hospital.

Hospitals Suck

But being in hospital sucks, Bilbo has to be isolated, he can’t leave the room and it is bloody boring! For Bilbo, for mummy and for daddy.

And it is heartbreaking separating Bilbo and H. Harrison gets terrible anxiety when he’s apart from Bilbo and his little voice repeats “where’s my Bilbo?”

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
Harrison and Bilbo miss each other so much when they’re apart. They are so close, sometimes they just need to be touching and not saying a word.

It was also half term and I felt robbed of another holiday with Bilbo. Our half term of fun in October was when we were diagnosed. Christmas was miserable with nausea and now this.

And whilst we’ve managed to squeeze some fun in we’ve also had to pass on some. Bilbo’s moods have been very up and down. Weekend medicine hass been a challenge, he’s not wanted to be very social. And I blame all of it on him being shattered. Bedtime is late in hospital and not very restful. He’s been snappy and angry – to be fair we all have.

Living Our Best Life

But once we’d managed to get the hospital visit behind us, things started looking up.

Bilbo’s appetite has started to return. And he was able to enjoy a visit with Grandma and Grandad.

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
Not many ducks but the views were good.
godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
Shopping with Grandma and Grandad in super cars.
godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
Aaaaarrrggghhhh scary dinosaur.
godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
Not scared of the big dinosaur!
godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
Finding fairy doors at the woods.
godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
Bilbo took Grandma and Grandad to the big chair at the woods.
godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
H missed all the fun as he was a little bit tired – LOL
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Bumper Car Fun

London Calling

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
The London Eye in all its glory, today was truly spectacular.

Today we headed to London for our postponed day of fun.

Bilbo’s school had a teacher training day today and so after a blood test and dressing change with Vicky first thing. We made a run for it.

And what a bloody amazing day we had. It was brilliant. We packed as much fun into the day as we could. Bilbo led, he made the decisions and the glorious sunshine definitely helped!

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
Chilling in Trafalgar Square

First we dropped by my office at 80 Strand to drop off some cakes and say hello to my colleagues.

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
We popped into my office to drop off some cakes. Whilst we were there Bilbo tried out the CEO of Pearson’s desk. There was mild panic when he nudged the mouse and the screen popped up.

Then we headed to the London Transport Museum

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
Bilbo enjoyed driving the bus.
godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
Bilbo really enjoyed discovering the London Transport Museum, we haven’t been since I was pregnant with Harrison.
godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
Bilbo enjoyed building a tunnel.

After lunch in the park, Bilbo asked to go on a boat. It was a blast especially the commentary.

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
We opted to have a picnic in the park, Bilbo commented on how lovely the views are in this park, i’m glad he enjoyed it as I walk through it to get to work and it has always had a special place in my heart.
godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
Bilbo loved taking snaps today in London. He took it all very seriously.
godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
Tower Bridge looking spectacular, Bilbo thought this bridge was beautiful and wondered how big boats like HMS Belfast could get through it. I explained that the bridge comes up to let the boats through.
godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
HMS Belfast looking glorious in the February sunshine.
godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
Bilbo took some great pictures today on the boat ride.
godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
Bilbo was invited to sit in the captains chair on the return leg of our boat trip.

Lego Store

Our final destination was the absolutely fabulous Lego store in London. I was blown away by how cool it is and Bilbo was fairly impressed too.

godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
The Lego store in Leicester Square is so awesome. Bilbo loved it and so did mummy!
godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling
In keeping with the London transport theme this is all made out of Lego.
godberstravel, #Donate4Bilbo, Bilbo, childhoodcancer, cancer, leukemia, leukaemia, living our best life london calling, london calling, lego store London, Lego
This mural is on the wall in the Lego store, it is so detailed and is phenomenal.

What next?

It doesn’t look like Bilbo’s bloods are where they need to be for the MRD to happen on Wednesday. So once again we wait and see how he recovers this week and hope for the best for Monday.

Today was the escapism we needed but tonight the worry returns. I just want this bloody test done so we can move on and start thinking about what next.

And what is next for Bilbo, he’s off to school tomorrow and he can’t wait!

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