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Bilbo's Journey

Day 260: Too Good To Be True

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

After the excitement of Bilbo’s last treatment on Wednesday . The joy proved to good to be true.

We had a jam packed weekend planned. Bilbo’s school carnival and on Sunday two birthday parties.

Downhill Fast

On Saturday morning as I made a last minute addition to Bilbo’s Zoo Keeper costume he complained of feeling a bit weird. He said he was tired and didn’t feel good.

My first thought was to let him rest a bit. And then I decided to grab the trusty thermometer to get a sense of where his temperature was at. 36.8 a little higher than Bilbo is used to be still well within normal.

A few minutes later he complained he was cold, it wasn’t cold.

I checked again he was 37.8 and within another 20mins he’d hit 38.3 – I called our community nurse and the hospital who advised to bring him straight in.

By this point he was shivering and didn’t look well at all.

Rich carried him to the car whilst I prepared our bags. We know that this kind of temperature is an automatic hospital stay. I had a mad panic as I realised we’ve not used the hospital bag since February. What I had packed was not entirely appropriate for a boiling hot hospital in July so a repack was required.

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Despite feeling poorly, he was still smiling!


I am truly grateful that we’ve not had more hospital stays. I’m grateful that up to this point Bilbo has kept as healthy as we could have hoped for through all the treatment.

That said the last few weeks have been brutal. The cocktail of chemo Bilbo has endured has put his little body through the wringer. And one hospital visit is in my view a small price to pay.

Dr Aye

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We kept H and Bilbo separated for a few hours but both of them were missing each other.

A weekend stay in hospital is never ideal. So I was over the moon to see our oncology consultant was actually on shift over the weekend. We love her and most importantly Bilbo trusts her.

When people talk about the NHS they often refer to it as this big juggernaut of an institution when in reality it is a million pieces and people joined together. And everyone’s experience is different, for me the NHS is truly about those who work day in day out to keep it running and keeping us healthy.

And Dr Aye is an example of one of those unsung NHS heroes. To quote Bilbo “Dr Aye is a superhero, she can fly” and he’s right she has angel wings. Her commitment to her patients and to our most precious boy is overwhelming and we’re enormously grateful for her.

My mind was immediately at ease knowing she was there.

Hospital Stay

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Nando’s and minecraft saved the day!

On arrival Bilbo had bloods taken these serve two purposes to give us a view of how he’s doing and some blood is taken to see if any cultures grow. The bloods showed that he needed a blood transfusion. And the cultures take 48hrs before they will show anything.

Bilbo was immediately put on IV antibiotics and these were then administered every 6hrs for 48hrs.

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Bilbo had 9 of these bad boys.

Dr Aye also picked up a heart murmur, Bilbo has never had anything like this before so it was quite a surprise to her and us. And this is one of the risks of having the hickman line.

I’m no scientist or doctor, but as I understand it infection is more likely to bond itself to a foreign body. A line is just that and if Bilbo has something nasty infecting him it could spread on his line. His line is very close to his heart and there lies the worry and concern. There was no reason to be alarmed at this point, but it was a concern.

And this has been a stark reminder that the line is always a risk. It is why we always need to be mindful that the smallest spike in temperature is a concern. And why if we have it removed we reduce that risk.

Let Out For Good Behaviour

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Bilbo wasn’t into the hospital breakfast so we also escaped to Ikea for breakfast!

Bilbo responded immediately to the drugs and his temperature returned to normal. The IV antibiotics are given every 6hrs and between that there isn’t a lot for him to do.

Blood was arranged for Sunday morning and he had his transfer once that was complete we were allowed out for a few hours. When they say we can leave we leg it, in case they change their mind.

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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

We made it just in time for one of the birthday parties. Bilbo loved being able to run around with his friends and act normally. And Harrison was delighted to be reunited with his big brother.

We returned in time for his 6pm antibiotics. And then he had a dose at 12am, 6am and 12pm.

All Clear

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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.

Bilbo had an ultrasound on his heart on Monday morning and was given the all clear around the same time that his cultures came back negative.

We were given the all clear to leave.

Bilbo will have bloods tomorrow morning and we will see how he’s improving. We need to get his neutrophils up so he can start maintenance.

In Other News

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Glad to be home, drinking tea and being sprayed with a water bottle.

Of course this was a bit of a blow and messed up our weekend but normal life has resumed today.

Bilbo has been back at school and his smile this morning when he ran into the gate melted my heart.

Today was also the day that Bilbo found out who his Year 1 teacher will be and we got his first EVER school report.

We couldn’t be more proud of how Bilbo has managed school on top of everything else this year. And to read in black and white everything he has achieved has left us thrilled. He’s taken every day, every challenge, every opportunity in his stride.

Tomorrow is another milestone. He has a settling in day with his new class and teacher, before wrapping up the year with a school disco and lots of playing with his wonderful friends.

End Of A Chapter

And so Friday will see Bilbo end his first year at school. The summer holidays will bring a new beginning for us. We will start a new phase of treatment and Bilbo will prepare for starting year 1.

Harrison also got his letter today to confirm his pre-school start date and from the 1st August, he will start his final year at our beloved nursery.

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Harrison living his best life…
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I love this picture as it captures so much of this cheeky monkey’s personality.

It is a fresh start for us all. Here’s hoping it isn’t too good to be true.

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