Unscheduled “sleep overs” at Alder Hey

Do you know one of those morning when you think, have I got time to wash and dry my hair? nah! it’ll be alright until later.  Well that’s the day you can guarantee we’ll be heading to hospital.

George seemed a little sleepier than usual on Wednesday and by the time it got to school-pick-up o’clock he hit 38 degrees which means emergency dash to hospital.  A quick phone call to our friend Nic, and I knew the kids were sorted for someone to collect them while I figured out what was going to happen next.

This time heading down the M62, I was having to make calls (hands free!) to ensure everyone else was sorted.  The builders are mid-job on the garden and needed a bit of directing, I needed to cancel Oliver’s tutor (he’s preparing for an entrance exam…another story) and of course I was trying to get hold of Damo!

George in Oncology Day Care
George in Oncology Day Care

We arrived at Oncology Day Care and George was checked over by Debbie, weighed, blood pressure checked and pulse etc 🙂 he had a temperature and needed Barry the port accessing so that they could take blood for culturing and give him IV antibiotics if need be.  In my haste leaving the house I had completely forgotten to prepare “Barry” with numbing cream, which takes an hour to take effect 🙁

I started stressing about it knowing it what it meant for George having to have the port accessed immediately.  Rach, our Clic Sargeant social worker, came over just the right moment.  She reminded me how well I’d done getting to hospital, remembering everything else,  that we are in the right place now and not to second guess how George was going to react.

Inserting the line to the port didn’t go down too well with George and he screamed and cried while the nurse got on with it.  Debbie stayed with us to help hold him down thank goodness… she’s a bit of a comfort for me too as she will just say it as it is and keeps focused while I’m flapping and trying to reassure George.

Messing about with the bed control
Messing about with the bed control

Luckily George’s mood soon lifted when the bravery box came out and he chose himself a little steam roller toy.  We had to wait then to find out whether he was neutropenic (when you have a low neutrophil count, which is a kind of white blood cell that fights infection).  We know there was a chance he’d be neutropenic as he’s on his intense chemotherapy now which really knocks his counts down.  Normal counts are between 1.5 and 8.0 and George was 0.3 so were admitted for 48 hours.  Due to George having a snotty nose and bad cough too he’s had to be put into isolation too.

Once he had collected his things from home, Daddy arrived to take over for the night shift.  I headed back to collect Oliver and Harriet from their Daddy and take them home.  After a cuddle and once they were tucked up in bed, I grabbed myself some tea which consisted of a bag of salt and vinegar Hula Hoops and a glass of rose.

Our good friend Paula took Oliver and Harriet to school the next morning and heading down the motorway again I started to feel a bit emotional again.  That feeling came back that I had when he was first diagnosed.  When we first found out it was Leukaemia, we were back and to taking over from each other Damien and I and although I know this time it’s nothing sinister, it’s hard to shake off that feeling when he’s staying in.  Or worse, worrying he’s relapsing.

Si popped in to say heloo
Si popped in to say hello

Being in isolation wasn’t as lonely an experience as I first expected once I was back to taking over, yesterday we had a surprise visit from our friend Si 🙂 he happened to be making a delivery to the Oncology department at Alder Hey so came in to see us… he even brought Mummy a cup of tea which was much appreciated.

We’ve had Jo the play-worker come in to bring Georgie some paints and pictures.  We’ve had Neil and Alan the health care assistants bob in for a chat and to see how George is, two of the pharmacist girls saw us and came in saying “George Rooza? what are you doing in here!!?”, the chef came for a chat and knew what George wanted to eat before he even said it.  Pip, another Play Worker who George loves, stopped by to see George and ask if he wanted anything along with a volunteer.  So it was far from quiet with George’s nurse Laura checking on him too.

We were lucky that George’s temperature stayed down.  He was on 4 hourly observations and 6 hourly IV antibiotics plus an hour’s chemotherapy and his steroids started again – the hunger monster already seems to be making an appearance but at the same time his mouth is starting to feel sore from the chemo!

There was no Hula Hoops and wine last night for me as I dashed back home to pick the kids up and got sorted for Harriet’s birthday party – yes, you read correctly.  Thank you to Clare for shopping for half the stuff I needed whilst we were in hospital!

 

Harriet's party
Harriet’s party

Last night was hard.  Harriet’s birthday party was a success and luckily her Daddy took her back to ours while I drove back to swap over with Damo for the night shift and let Oliver give George a cuddle.

George wasn’t in a great place and cried a lot last night.  I had to wake him up to give him his steroids which didnt go well, not only did he spit half of it back at me he wailed that he wanted to go home which broke my heart.  He was unsettled all night and his 6 hourly IV antibiotics weren’t falling in sync with his 4 hourly observations at all.  This meant it was every couple of hours the nurses were back in checking his temperature and blood pressure or rigging “Barry” up to the beeping machine.  Every time he was disturbed he was upset again, asking for Daddy and home and I was up trying to comfort him.

Jo and Georgie
Jo and Georgie

So this morning we were both feeling very tired and grumpy with each other, George had also just been been pumped with chemotherapy so has more of an excuse for a bad mood than me.  It’s just hard coping with the upsets when you’re knackered yourself and now it seems the hair is going and it’s everywhere!  in his mouth, his eyes, food, the lot.  It doesn’t even matter in the scheme of things.

The doctors came in and told us the George has Rhinovirus and Enterovirus which are variants of a common cold, so satisfied they knew what was causing his temperature, allowed us to go home after his next dose of steroids and once some more blood was taken.  George also needed his gripper removed from Barry.

It felt like a lifetime waiting for the discharge papers and for the nurse to return with George constantly crying… luckily Rach, the Clic Sargeant social worker bobbed in again to see if we were ok.  She ran and picked George up a little gift and a book to help cheer him up.

After an embarrassing “where’s the car gone? oh there it is 5 floors below!” moment with Jo, the playworker who’d helped me out, off home we went, feeling relieved and ready for a lie down on our own sofa.  About half way home it dawned on me I had no door key to our house and Damien was at work in Manchester 🙁 🙁 our neighbour who has he spare said she was out but back in half an hour. So I stopped off for some lunch then pulled up on our drive feeling sorry for myself while George slept.

Once in George had predictably slept enough for now and was awake but groggy so any chance of a Nanna nap was out of the question.  He was relentless and nothing seemed to satisfy him and this has pretty much gone on for the rest of the day.  I tried to shut my eyes during an episode of Mr Bean when it dawned on me that I hadn’t come home with any steroids from the hospital and he was meant to take it twice a day for a week!

After our visit from our friend Si yesterday, he’d actually text again to say he was around, unaware that we’d now left.  Luckily I was able to organise with the hospital for him to collect George’s drugs.  What a massive weight lifted and help as I think another trip to Alder Hey would have tipped me over the edge.

The hair had a good innings
The hair had a good innings

Talking of being tipped over the edge, I chose my moment to have a full on cry in the middle of the school playground today.  I’d kept it together all day whilst on my own but I’d pushed myself to pick Oliver and Harriet up, after worrying I haven’t been around for them enough.  As soon as my friends asked if I was ok or offered a hug that was it, I’d gone.

Kath came back to ours whilst I was a bit broken, and I walked round like a zombie trying to make George happy without success whilst the other children just got on with playing.  He wanted to go to the park with the other kids, so we took him, but he cried for his scooter.  So Kath went back for the scooter but then wanted a football instead… we got the ball, he wanted to go on the slide, we let him on the slide, he cried to go home.  It was relentless and exhausting.

A little later Karen arrived and sorted some tea out for the kids while I comforted George.  He was now crying that his mouth hurt and his bottom hurt.  I dosed him up on morphine as he appears to have some mouth ulcers which are a side effect of his treatment…. so is his “stinging bum” as he calls it as the chemo strips away any fast reproducing cells in those places 🙁  So he’s crying about things I can’t do anything about and I’ve got Harriet opening birthday presents and i’ve not even had chance to look at them with her. What do you do?

Damien is since home from work and has been taking over when George allows him, the morphine has kicked in and I’ve had a moment of solitude driving to pick up a take away.  Small things.

I feel another long night ahead but at least there are more hands on deck and we’re in the comfort of home.  Although the hospital offers our baby the protection he needs in these weaker moments, when you’re in, there’s always stark reminder of children suffering so much more…. and parents too, you can see it and you can hear it.  We were only in for 2 nights and I’m a mess, we’ve got friends who’ve been in for weeks and some for months, it feels wrong to complain!

Just want to shout out and thank the stranger in the lift yesterday who hugged me after a 30 second conversation about our children who were staying in Alder Hey.  Also to Leanne, who is another Mummy on oncology whose daughter Leah was diagnosed a few weeks before George, our chats over the past few days have meant a lot.

Also thank you to our friends for popping in to see us or offering to at least, those who’ve helped and text and kept us afloat by just being there for Oliver and Harriet.  We couldn’t get through this without you x

We’ve got more lovely friends raising money for George and for charities that have supported us this weekend.  Good luck Haynesy, one of Damo’s best mates in Norwich who is doing a Biathlon – you can read more about his fundraising here.  Also to my little sister Shannon and my friends Nikki and Andrea who will be all taking part in the Manchester 10k on Sunday – I hope to be able to get there to cheer you on!

Here in Warrington, there’s an ‘Around the World in 80 Traders‘ event going on tomorrow where Jenerics will have stand supporting George’s fight against leukaemia… he is a very lucky boy to have so many people who love him 🙂

 

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