This week George was in Alder Hey Children’s Hospital for the first of his theatre trips of the Maintenance phase of his treatment. He was in having intrathecal chemotherapy which is chemo via lumbar puncture into his spinal cord. This is what he’ll have every 12 weeks for the next few years as part of his treatment for Acute Lymphoblastic Leukaemia.
I shared a video via our Facebook page of him playing and trotting around 3B Day Care whilst playing with his little aeroplane that he’d chosen from the “bravery box”. He’d been nil by mouth since the night before and wasn’t able to have a drink, he’d been cool-as having Barry, his port, accessed, and was waiting at that point to be called to the theatre waiting room. Had it been me waiting to go to theatre in his circumstances, I’d have probably had my head in my hands and no saliva left!
It was quite a poignant moment for us, given 6 months ago we’d only just learnt of George’s leukaemia diagnosis and knew little of what lay ahead. All those times George would have completely had enough, crying and kicking off, but the poking and prodding had to continue. The stress of administering anaesthetic , pre-meds to calm him, having to stay lay flat after theatre for an HOUR!… the lovely staff (and other parents) trying to reassure us that one day, he’d be ok with it and that they’d seen it all before. I couldn’t ever believe that any of it would be “normal” as I avoided eye contact with people for fear of I, myself, having a melt down too…
Now look where we are, I know it’s not always going to be completely smooth but George is so happy to go to hospital. Everyone knows who he is and shouts his name as they walk past while King George gives them the royal wave. He knows the drill, he loves the nurses, he plays with their equipment and says he wants to be a doctor.
When George was first diagnosed there was another family on the ward with us whose daughter had also only recently been diagnosed with ALL (Acute Lymphoblastic Leukaemia). Their little girl was experiencing some rough side effects and I remember talking to them and being so frightened about the future. The thought of being in maintenance and things being more straightforward seemed ridiculous to even consider.
On Wednesday when George was in hospital for a blood test, we spoke to Piper and her mum, we were laughing, smiling and celebrating as they’ve also moved into maintenance…. I’m sure there was even some running man dancing. I remember looking at people like us, just after George’s diagnosis, when things were hard, and thinking how could possibly be laughing!? it’s funny how things change.
On Thursday, I also popped in to visit little Theo’s mummy, he has been in hospital, in isolation, for months so thought she might fancy a Costa. I couldn’t stick around as I was waiting to be called to get George from recovery but his lovely Mummy passed me a gift for George’s birthday. He enjoyed opening it once he’d come round, thank you so much Natalie – what a thoughtful gesture, he’s worn his George Pig top this weekend.
People reading this may remember Theo is a 2 year old from Warrington whose family and friends are fundraising to get him to the USA for treatment. You can read more about this and/or donate here.
We were also sat with Erin (the little girl we’ve met who has benefit from a Little Princess Trust wig) on Wednesday and she was in theatre at the same time on Thursday too. It was nice to chat with her mum and to hopefully be able offer her some comfort as we move forward as Erin was diagnosed more recently. I told her about the 19 young girls from our children’s school and the locality, that her photo inspired to donate their hair to The Little Princess Trust. Erin and her mum thinks it’s fantastic!
Some of the girls have already had their hair cut and are looking great 🙂 as is the fundraising! we’ve smashed the target and not even half of the girls have had their hair cut yet. We have the local newspaper coming to photograph our little heroes all together this week once they’re done. Harriet’s hair chop is this Tuesday, she can’t wait.
I overheard her in the bath with George earlier talking about how he’s lucky he doesn’t have to wash his hair at the moment. She’s so lovely though, she told him not to worry though because it’s going to come back one day. She also sat telling him that she’s having hers cut off for little girls like him this week. Harriet she wants to make them feel happy again – my heart could burst with pride.
Another proud Mum moment was Saturday when l got to watch Oliver play in his first basketball match for The Eagles. He was great, given he’d never played before, he charged straight in without hesitation amongst the opposition. The other team had quite a few high level players but that didn’t phase him at all, he kept getting the ball and generally made the game more difficult for them. It’s great he’s got something for himself that myself and his dad can take him out to. He was too cool for school not posing for a photo!
George was absolutely made up this week as well – Thank you to our lovely neighbours, the Tsangs, and their family for George’s really generous gift. The family had done some fundraising through their business and all put in to buy George a battery operated digger, some big Lego storage containers in the shape of Lego of course and a fire engine tent. He’s one very lucky boy to have you all as friends, as am I.
It’s the end of school year this week coming for Oliver and Harriet, a bit of an emotional one for Harriet as well with her teacher leaving. We have George’s graduation tomorrow and a visit from George’s teacher. I can’t believe we won’t have the comfort blanket of Playdays anymore 🙁 gifts for the teachers just don’t seem enough to signify how much they all mean to George and us as a family. I’ve looked through George’s keyworker file that details his journey since he started there. It’s really sad to see the photos from last year when he’s quite obviously poorly but we didn’t realise. Then the photos as he changes throughout his cancer treatment, i’m so glad we kept up with attending preschool, I wouldn’t have felt as confident as I do now about him starting school without them.
Prepare for an emotional post as we get the kids sorted for school this coming September!
So we’ve got lots going on, we’re excited for what the summer will bring and feel elated to be able actually make plans to get away for a break in the UK.