Day 6: We’re home for now…

A bit of colour and a lot of cheek 🙂

We are home…for the weekend and all being well our next hospital visit won’t be until Tuesday. HURRAH Happy Birthday Rich!

Once again we’ve had a day of two halves. Getting fit to leave hospital has been nothing short of traumatic for Bilbo.

Last night

After completing his transfusion at about midnight he got a nose bleed. Nose bleeds are traumatic for two reasons, one Bilbo is afraid of blood. He’s told Rich in a chat whilst playing on his tablet and he confirmed again with me tonight whilst we cuddled to sleep. I did what felt right at the time, I finally admitted I was scared of spiders (despite trying to hide it from the boys) He replied “no your not mummy” I said, ” yes I am, but I hide it well so you can pretend not to be scared of blood and no one will know”

The second reason a nose bleed is traumatic is because Bilbo was due his platelets which means his blood doesn’t clot very well which means the nose bleed didn’t want to stop. Ice in a glove didn’t work and got Jess our night nurse a lot of grumpy – “STOP i’m tired and I want to go to sleep” so the platelets were started early and a very late night for us both.

Before we could leave hospital Bilbo had to have 4 more yucky medicines, his bloods had to be taken with a needle as his cannula had stopped working (for fucks sake we only needed to do one more thing with it!!!) a big old injection which I was reliably informed was worse than a vaccination – GREAT! and his cannula removed.

Not sure what it is but he likes hiding in the hole…

We smashed the reward chart…so the Jurassic World Lego is due to arrive tomorrow.

First Reward Chart Complete – he’s been a trooper!

Time to go

With our room packed up we made the great escape, despite Bilbo telling me he didn’t want to go home and he wanted to stay in hospital forever. After all that trauma you’d be mistaken for thinking why on earth would he want to stay.

Well quite simply because despite all the crap we’ve dealt with in the last week the Kamran ward is the best possible setting for all that crap. The play room is bright and full of toys, games, book and Bilbo’s favourite Lego, dinosaurs and crafts.

Just a few of the Kamran ward faces

The staff are always smiling, always kind and know just what to say and do in every situation. Whilst this might be our first cancer rodeo, it isn’t there’s they get it and the team are simply amazing!

We’re home

Once we got home it felt surreal, Bilbo doesn’t look particularly sick today so for a split second I dared to believe this was all just a really terrifying nightmare and i’d woken up. Sadly not the case…and the meds I need to wade through were the perfect way to bring back a dose of reality.

Learning quickly, these meds are now our responsibility when he is home.

What next?

Bilbo’s journey for the next month will include a number of hospital visits as a day patient for treatments, procedures and check ups. In between appointments we can try and keep him at home.

What this means in reality is our life needs to change, our routine is going to be different, we need to be acutely aware of ANY increase in Bilbo’s temp.

So tonight we’ve packed day bags with the things we need for the visits. Chargers, snacks, changes of clothes, wipes, hand cream (my hands are so dry after washing and rewashing and all the antibacterial stuff) changes of clothes etc. We also need to have overnight emergency bags in the car because a day visit could turn into an overnight and Oxford is far away.

We also need to have things to hand at home like changes of sheets, his meds, all the documentation, i’ve ordered a new diary and scheduled our months worth of appointments. I’ve written lists of things we need to do, chase, organise and figure out.

THANK YOU

We’ve had beautiful flowers from a stranger and my work. They’ve cheered me up no end.

Beautiful Flowers from a stranger – THANK YOU!

The gifts of books and activities for Bilbo are most welcome we’ve packed them all into a box so we can grab and go when we need or allow him to pick and choose on the many days we have cooped up at home ahead. I have a feeling we will be taking out shares in Lego, but it seems to be the best way to bribe him to do the worst of his treatments.

We’ve got a box filled to the brim with snacks to take to the hospital for the day. We’ve had food made and dropped off, a special mention to our neighbour Irina for her lasagna. Putting it in the oven was the first thing we did when we got home and we all enjoyed it very much including Bilbo who ate a whole plate full.

And the cards and pictures from his friends have warmed our hearts, tomorrow we start work on Bilbo’s Wall of Love we will be sure to show you all the progress.

Tonight we’re home, our baby is upstairs and we were able to have a birthday cake for Rich as a family…we’ve survived this week!