Tomorrow, Wednesday 21st September 2016, will be George’s first trip to theatre for a lumbar puncture to give him spinal chemotherapy since he started big boy’s school. He had to come out of school today to go to Alder Hey for a blood test in case he needs any blood transfusions before tomorrow’s procedure.
I’m sure if it was one of us adults going to theatre under general anaesthetic we’d probably be in bed for the week following, feeling sorry for ourselves. Providing all goes to plan there’s no doubt that George will be back trotting into school on Thursday. When I say trotting, I mean, whining for me to carry him in to school because his “legs hurt”, only to spend the day running and riding bikes around with his friends with no pain at all… funny that.
I’m not really nervous about the actual procedure as we all know the drill now, particularly George whose only thoughts are “will I get a present if I stay lying down afterwards?” (this is to prevent the chemotherapy reaching his brain and giving him severe headaches if you remember). I’m more nervous about his blood test results and where they’re up to.
George has been on reduced chemotherapy for 5-6 weeks now because his neutrophil count isn’t where they want it to be, it’s still quite low. Neutrophils fight infection and are “good” cells. He had a bad cough, it reached its peak and has gone now but his neutrophils have still remained low. He’s borderline severely neutropenic… not that you’d be able to tell by looking at him. Reduced chemo is not what we want, shite as the side effects can be, we want to feel like he’s on a decent dose to prevent relapse, but then too much chemo is what is likely to knocking his neutrophil count down! you can see the issue here.
We know that relapse whilst on treatment would be quite rare, it’s when he comes off treatment after the 3 years that the chances of it returning increases – makes sense.
I read a lady’s angry rant on a FB support group for parents of children with cancer recently. This lady was p*ssed off because her child has just finished treatment, and other non-cancer-parents keep saying things like “well at least it’s all over” and making references to being able to relax now. No. Folks, be mindful that coming off treatment, depending what type of cancer they’ve had, will be worse for that Mummy or Daddy (or person themselves!) than a lot of their experiences so far – and there will have been some baaaaaaad times believe me. Yes, their child may no longer experiencing the side effects of chemo, but oh my god, relax!? I’m sure it was completely innocent comment, people just don’t know what to say.
George still has years of chemotherapy treatment ahead of him. We have this dodgy blood count which will probably just be nothing, but I’m constantly on pins, looking for a limp, fretting over a temp, worrying when he doesn’t feel like eating his tea or just looks slightly off colour. The first thing that pops up into your mind is that the leukaemia is back.
George finishes his treatment in the Summer of 2019 all being well. I hope that, if only the followers of my blog take something from this post, that will be a few more people who will be a little more mindful of the language used when speaking with the parent of a little survivor (or ANY cancer survivor for that matter). Yes we’ll reach milestones, yes we may now have a new lease of life, we may view the world completely differently. But we’re not all kicking back and chilling because our child has a full head of hair, or is attending school, or their last dose of chemo has been taken. The constant fear of relapse is always in the back of our minds, whilst getting on with life, living it to it’s fullest with those we love.
On a lighter note, this week has been a week filled with having places to be and relaxed doggy walks… yeah it doesnt sound like me, the relaxed dog walks that is. In reality, the dog is currently refusing to walk unless it has canine-company. I’ve somehow ended up over-socialising my bloody dog as if that’s a thing!! She already looks like me, now she can’t cope without mates like me! So we’ve been practising going out without half the dogs in Warrington… Look at her face on that photo, that’s what I’m dealing with.
Kids and school-wise we’ve had 3 lots of homework, we’ve got 3 lots of reading, 2 lots of spellings, basketball training, basketball matches, karate, swimming lessons, art and craft club and running club this week. That’s around hospital twice for George, shopping and we’re about to start viewing high schools for Oliver… I’m doing my best at empowering the kids, teaching them right from wrong, teaching the dog not to jump up and nip anything that moves or drag its arse along the floor.
Suffice to say it’s Tuesday and the gin/wine/turps is calling me….