Delayed Intensification – Day 44

A nice early trip to haematology outpatient clinic in the morning. Remembering being a bit hungry last week as he had a drip up for hours, I took my rucksack heavily loaded with snacks of all kinds. What I didn’t remember is that he wasn’t getting the drip today.

Kip was in for another lumbar puncture and intrathecal methotrexate, and once again his personality was on display for all, being very vocal and some fantastic laughter. He even picked up an entire bus… that was heady to a village called Fisher Price.

In clinic I spoke to two mums whose children were at opposite ends of treatment, one 2 year-old boy diagnosed in December, and a girl in her teens about to have her last treatment before discharge. The former is still in that shellshocked phase I remember all too well, still not able to take this all in, and not yet knowing deep down that her son will likely be OK. The latter is in such a good place and I hope that we will be there in three years time. Such positivity, gratitude, humour and hope.

Delayed Intensification – Day 36

Today was a significant day as we properly started on the second half of this block. It’s a bit of a milestone because it means Kip’s bloods have recovered enough from steroids to have the next bit of chemo.

That meant fasting from solids from bedtime on Monday, a wee feed at 5am and a big gulp of water at seven before going in to the outpatient clinic at half past eight. Kip was an absolute delight, cheekily smiling at everyone, winning hearts and minds and that sort of thing. His treatment for the day was:

– Hydration

– Lumbar puncture for monitoring

– Intrathecal methotrexate (chemo into the spinal fluid – yummy!)

– Cyclophosphamide

– Ondansetron

– Cytarabine

– More fluids

– Hugs

The lumbar puncture and methotrexate were given under anaesthetic, and we’ve got our technique down pretty smooth now. Kip stays in the sling until the very last moment, then cradled on my lap while the anaesthetist sneakily reaches over my shoulder with the gas mask. He protests for a moment but then he’s asleep in seconds, I roll him onto the trolley and blow a big raspberry on his tummy before they get on with the procedure.

I’ve got to say they’re pretty down with their technique too, as ten minutes later Kip is wheeled into recovery. He wakes up and needs hugs, then a big feed.

Then it’s back to the difficult business of being overwhelmingly cute. He’s quite good at that.

Delayed Intensification – Day 1

Did you know that Intrathecal Methotrexate scans perfectly into the theme tune from Bob the Buidler? So that’s been in my head all day.

Kip’s plan for the day involved fasting from 5:30am, heading in to the clinic for 9am, lumbar puncture at 10ish to check for leukaemia cells in his spinal fluid (none so far!) and give chemo into his spine.

He was scheduled to have the painful pegasparginase injection on Friday, but it was brought forward to today so it could be given while he was still under anaesthetic.

Kip is so brilliant in theatre, he settles really quickly and accepts the anaesthetic with minimal complaint – it can’t be nice to have a total stranger start pumping weird-smelling gas into your face, as anyone who has travelled on the West Midland buses will tell you. Today’s distraction was my iPhone, which he can operate better than I can.

He recovered really well and after getting a massive feed was walking about in clinic demonstrating his exceptional cuteness to everyone. He had a huge sleep in the afternoon and, since he’s not neutropenic for a few more days, has just gone out to a friend’s house with his sister.

Tomorrow we start the steroids, and it’s a higher dose than last time so I’m expecting lots of side effects, not least his hair is probably going to fall out again in the next eight weeks.

Not fun but blimey it could be so much worse.