A wobble during maintenance phase treatment for leukaemia

Feeling like the world is moving in Daycare

So a year to the day yesterday was the first day George was hospitalised in Warrington for low blood counts, a limp and fever.  Little did we know how our world was about to never be the same again.  A year on from the initial symptoms of leukaemia developing, we’re trying to live life to the fullest around George’s treatment and hospital admissions.

This time last week I was telling people how lucky we’ve been, apart from for scheduled visits and the odd temperature here and there, we’ve avoided staying over at Alder Hey and anything too concerning.  Today we’re sat waiting to be called to theatre following an overnight stay for an unscheduled investigative lumbar puncture and MRI.  Someone somewhere must have read my gloating Facebook posts of festive fun thought…woah… that’s enough Lis!

Yesterday morning George didn’t seem right when he got up, he was unsteady and said “the world is turning”.  I put it down to him getting up out of bed too fast which had made him dizzy.   He was holding the furniture in his bedroom to get to the bathroom and asked me to support him on the loo.  Afterwards he was fine and took himself downstairs to Oliver and Harriet for breakfast.  If I’m honest, I didnt think too much of it!

Damien had taken the day off for us to go out for breakfast, do some last minute Christmas shopping and finish the wrapping – a rare moment of just us two while the kids were in school.  He took them off on the school run and I lazed around making the most of my rare lie-in.  I just asked Damien to mention to George’s teachers that he’d had a dizzy spell.

George must have been in school for 15 minutes tops when the school office called to tell us he seems confused and is standing quite rigid.  Damien rushed back for him while I gathered our stuff and called Oncology Daycare at Alder Hey.  We were told to take him straight in and if there was any delay to call an ambulance.

The following few hours consisted of George being vacant, staring into the middle distance with dilated pupils even when a light was shone into them.  He was weak down his left side and didn’t seem to understand us when we spoke to him.  It probably lasted about 5 hours before he started to return to normal again.  The nurses and staff were lovely and supportive and kept a close eye on him throughout – we also got to chat to lots of our oncology friends as they passed through for their treatment before Christmas.

I recalled that the day previous I’d had a call from school saying George had bumped his head but there was no mark and he wasn’t upset.  Although George hadn’t been sick, the nurses considered him having delayed concussion and he was sent for for a CT scan.  That wasn’t a very positive experience… the motion of the moving bed down the brightly lit corridors sent George’s eyes rolling all over the place and he became distressed.  He cried and Mummy had to lie like Superwoman (literally!) on the bed holding his hands as he went through the CT machine.

By the afternoon, although George did look to be improving, the ANP looking after us said that they’d be happier if he stayed overnight to be monitored.  The CT had been inconclusive and were told it was likely he’d have to go to theatre this morning for an investigative lumbar puncture.  They will some spinal fluid under general to be tested for viruses and “nasties” i.e. cancer cells.  He’d already had Barry accessed for bloods to be cultured, we knew his blood counts were good, he didnt have a temperature and he’d provided a urine sample.  The hospital want an answer as to what has set him off in this way before they can relax.

Smith Brothers Champion Boxers at Alder Hey

Alder Hey has a real festive air about it at the moment, there are little Christmas trees everywhere, Santa and even some superhero characters knocking around bring smiles to the kids faces.  There were a group of brothers who are boxers who came round the Oncology unit to see all the children too…they were so friendly, nothing phased them.  Having been in a position where you’re scared to death of being around children with cancer, I think it’s an amazing thing to do coming here!  I have friends and family that have still never stepped foot in the place yet there they are.

George had a restless night, I’m shattered as I kept having visions of him chucking himself out of the bed (even though there are rails on it).  This morning he’s perky, chatty and reassuringly like himself.  He’s nil by mouth ready for theatre and asking for food constantly – it’s currently nearly twelve and we’ve not been called yet.  Daddy has returned from home and we’re being martyrs not eating for him either.

Karen, who was George’s nurse yesterday in Day Care, has already bobbed in to us in our room to see how he’s doing and was well impressed with how bright he is.

Daddy and Georgie enjoying some Youtube Lego videos

I had got into my head that if he was well this morning he probably wouldn’t go for the MRI.  I’m conscious he’s going to freak out in it and he has to lie perfectly still in the really loud machine for 15 minutes.  I’ve pushed for him to go under general anaesthetic whilst in there but there isn’t a slot available at the same time as his lumbar puncture when he’ll already be under.  I just thought with him being seemingly well today they wouldn’t put him through it.  However, it’s not the case, although he’s much more ‘with it’, he’s still slightly weak on one side and the doctor would prefer a more detailed image of his head and spine.

Fortunately for Oliver and Harriet, their Daddy has finished work for Christmas now so they’re getting some quality time with him while we’re back and to.  Thank you to everyone who keeps messaging offering to have them! I really appreciate your kindness.

We also appreciate the offers of visits, dog walkers, shopping and present wrapping!  but i’m keeping optimistic and am hoping these scans and tests are going to be clear and we’ll be sent on our way today.   If not, I will most definitely be in touch.

So for now we’re just watching shite YouTube videos and building Lego with George, desperately hungry but not wanting to eat for George’s sake but also a little through anxiety at the same time.  He’s saying he’ll be very brave for his MRI – he shouldn’t even have to know what one is, never mind be brave!

Feeling the need to remind myself what there is to be grateful for so here goes with today’s 5 glads!

  • Glad I finally got to meet a local family I’ve been speaking with online after their little one unfortunately became an oncology patient at Alder Hey recently.  We had a couple of mutual friends who’d put us in touch and realised last night we are neighbours on Ward 3B.  We chatted for hours last night, putting the world to rights.
  • I realise that without tough situations like what’s happening right now, I wouldn’t appreciate how many good friends and family members we have behind us.
  • Glad we got to bump into our friends Erin and Jack yesterday in Daycare and hear how well they’re doing and what lovely Christmases they have planned – something that months ago they couldn’t even think about.
  • Grateful for Alder Hey… and how there’s no messing about in this place, if there’s something a-brewing, there’s not waiting it out at home, they just keep going until they work out what it is or how they can try to fix it.
  • The nurses and support staff.  They go out of their way to chat, help, support and even make us laugh during our stay.
Off to theatre with a turkey

I’ll keep visualising wrapping presents with a glass of Baileys later… hope every one is having a lovely build up to Christmas and not complaining too much about traffic, shopping, wrapping, and their kids – treasure it all folks!  Update you all again soon x

ps. he’s just gone into theatre no problems with a member of theatre staff with a turkey on his head.. what more do you want?