What a week… i’ve never known anything like it.
On Tuesday we headed into Alder Hey for George to have a blood test. This was to make sure his counts were high enough to get started on the new “Delayed Intensification” phase. We got a call later that day to confirm we needed to go in the following morning as planned as his counts were great.
Wednesday, Daddy took George into hospital first thing to get ready for theatre for spinal chemotherapy whilst I took Oliver and Harriet to school. I then met them there just as they came out of 3B Daycare. having had his gripper inserted into his port already, and was heading to the theatre waiting room. The nurses were very impressed with how calm George was as they put the needle into “Barry” – he is so unbelievably brave…
George was very excited to be able to ride the trike again however he had to be herded into a corner as it was quite busy in there this time and we don’t want to risk him catching any nasties.
He went into theatre with no fuss, with his usual lovely anaesthetist who was asking if she could have his Mummy’s autograph as she’d heard me on the radio! <cringe> Georgie gave me a kiss goodbye and went off to theatre smiling.
We grabbed a coffee whilst he was under anaesthetic and then headed back just in time to be called to collect him again. He came out and was happy still, staying lay flat asking for food and to watch TV as usual. After a while, Damo decided he was going to head back to work as all was well and once George has had his observations done for a an hour or two, we can usually go home.
Unfortunately and typically! once Daddy had left and George was able to sit up, he started to complain of bad headaches and was crying. This was new to us as he’d never experienced this before… he just kept lying back down saying he wanted to go home. Kev, the ANP who was on that day, immediately prescribed morphine for him. It took what felt like an eternity for the pharmacists to sort, when in reality it was probably no time at all. I was pacing around with him crying in my arms as he didn’t want to be on the bed any longer.
I was starting to stress as it was hot, he was in pain and I’d also realised George’s buggy was in the car and he’d wheeled in on his trunki. There was no way he was going to wheel back out and I now had all his meds, a trunky suitcase, my coat (it was stifling in there!), my bag and George to carry out.
Kev told us we weren’t going to be able to go home until George had stopped having headaches 🙁 a very disappointed Georgie was starting to get more distressed as was I. The headaches were due to the chemotherapy he’d had injected into his spinal cord which travels into his cerebral fluid.
I was giving him a “cuggle” on my knee as he then puked all over himself and me 🙁 this is a side effect of the anaesthetic. So he wasn’t having a good time of it all. I had sick down my leg and in my slip-on shoe. The pungent aroma of wotsits/fresh orange was radiating outwards from us and I was starting to wretch.
Luckily Mia’s mummy who was in the cubicle next to us grabbed us some paper towels while Debbie came and cleaned around us. It was grim and I can still smell it now. George fell asleep in my arms straight afterwards so I sat for a minute with him, then moved him onto the bed. One of the lovely playworkers came over and sat with George while I cleaned myself up as much as I could and even managed to run in my squelchy shoe to the car for the buggy.
It was a huge relief knowing I wasn’t going to struggle out of the place and Pip, another lovely playworker, also grabbed George some brand new minion PJs to change into 🙂
Damo then had to come back out of work (in Manchester) to pick Oliver and Harriet up from school as we weren’t going to make it back in time. My heart jumped when George started stirring and I was holding my breath waiting to see how he felt “please be ok, please be ok”, he sat up looking tiny with his dody in and said “it’s gone!? my head isn’t hurty!? it’s magical!”
It’s magical…. could he melt your heart any more. He literally threw his legs over the side of the bed and walked round to me for a hug. Then he picked up his swabs (swab sticks to test for MRSA etc) that we’d already done and walked over to the nurse who had been looking after him to hand them over.
I’ve no idea what he was saying, but he was talking to her as he handed them over, again he looked so small, the nurse crouched down to him and put her hand on his shoulder and shot a little smile my way… well that was me gone then, I was in bits. I’d managed to keep it together until then… I think it was relief.
So we went home. We had a class to get Oliver to and I needed to pick up Harriet’s birthday present and wrap everything. I slept well that night. Day 1 done…. only the remaining 8 weeks to go.
I’d like to say the following day was easier but it wasn’t. We were up early for Harriet’s birthday, she was a giddy kipper and I had loads to remember… sweeties for school and all that. Daddy went to work and George and I dropped the older kids off. I’d planned ahead with a spare set of clothes each in the trunki this time and also knew I’d take the buggy straight up with me so was feeling confident.
All was going well until about 15 minutes into the journey to Liverpool, just near the M57 where the motorway splits into three, at approximately 70mph with no sick bowl to hand, poor Georgie brought all his breakfast up. He cried, I tried to reassure him whilst panicking he’d choke and trying to not kill us by watching the road ahead. I had no idea where I could come off the motorway so decided we’d just plough on.
Of course, with no baby wipes in the car, there was not one parking space under cover so the car sat there in the blazing sun ALL DAY caked in puke. I stripped George on the car park, he cried, I wretched, I cried, he wretched. I had nothing to clean him up with (used all the wipes the day before!!) so he put his one clean outfit on, over the sick.
We were a sight for sore eyes when we walked in again. The nurse directed us to the shower where we could get cleaned up and gear ourselves up the drip and an hours worth of IV chemo. He carried on being sick for the time we were there and was prescribed anti-sickness drugs to take as well as his morphine.
He looked like crap and obviously felt like crap and it was sad sitting there knowing that it was this medicine causing him to feel this way. It’s a horrible feeling that I wish I could take away. But amongst all this, I received a really aptly timed picture from George’s preschool saying “Go George!” from all his little friends and teachers. That day they’d had a Superheroes and Princesses walk for George… I shown him the picture and cried a little.
Thank you everyone – not only for your walk, and the funds you’ve raised, but for that special moment in hospital when we both felt sad – you really lifted the mood.
The doctor decided to leave the gripper in “Barry” as he may have needed fluids the following day because of the vomiting. Damo needed to come out of work again to look after Georgie so that I was able to collect Harriet up from school on her birthday (and Oliver of course).
The car was as you would imagine when I got back to it. Thank you to the random stranger who gave me a packet of wipes from his boot… He copped for the whole story in the lift so probably felt obliged!
George was surprisingly much like his usual self once home, of course he always is once Daddy is around! We then had classes to get the kids to again then Pizza Hut for tea with Oliver and Harriet’s Daddy. Damo and Georgie stayed at home.
We had Friday off, when I had the pleasure of cleaning the dried vom out of the cracks of the car seat and also had our friends Dawn and Fin visiting during the day. George had a little play on the park for 20 mins, so that was a nice change. Harriet’s little friend Lola came to visit after school with her birthday present and with her mum Kath who I got to offload some of my stress to…
Yesterday, Saturday, George’s sickness had died down but he had to go back for an injection in his bum and have his gripper taken out. I honestly couldn’t face another trip to Alder Hey and see him crying, which I knew he would, so I stayed with Oliver and Harriet and Daddy took George. They had to wait around for an hour following the injection in case he became ill.
Meanwhile Oliver and Harriet enjoyed themselves at our friend’s house, the Appletons. Thank you for looking after us Mrs A. George came home and was in a good mood and told me all about it before carrying on with his day.
So next week here we go, Week 2 looks slightly more promising without a theatre trip, I’m going to pack the entire house when we go and make sure we have sick bowls within easy reach in the car. It’s a learning curve!
Here’s a little pic of him with his latest beads, he’s come so far and is still smiling 🙂