Delayed Intensification – Day 63

Kip was put on the emergency theatre list to have his central line removed. The list started at 9am, and kept going until they were finished. Any trauma patient that came in would be bumped in to the list and we would wait our turn.

Kip was fasted from solids from 3am, and wasn’t allowed a drink from seven, until it was obvious we wouldn’t be seen before lunch so he was allowed water until 11. They also put up a drip with sugar and salt in it, and he didn’t complain in a hungry way all day.

As it was, the list continued and continued until, at one minute past seven at night, we got the call. Forty minutes later it was all done, and our now tired and cranky boy had a plaster where the central line had been, and two shiny new cannulae, one in his left hand and the other in his right foot.

The surgical team worked eleven hours on a Sunday. When Kip cried they gave him cuddles until we could get there. They were smiling, thanking us for our patience. They were from all over the world. And we didn’t get a bill at the end of it.

#LoveYourNHS

Delayed Intensification – Day 8

A day late because the boy sat on my keyboard and almost published a couple of dozen blank blog posts…

A good day as we finished steroids for a week so hopefully the next week will see a bit more perkiness and mobility. Kip’s appetite has been ridiculous for a few days as well; it’s pretty tiring just keeping him fed round the clock when he won’t let us put him down.

The steroids are the least pleasant of all the meds, they mess him about and I end up having to hold him down to give meds. Despite what some people say about mental health nurses, we don’t actually like doing that. Especially not to our own kids!

Wednesday sees us in clinic for vincristine and Doxorubicin, let’s see how it goes.

Delayed Intensification – Day 7

A dead guy once said “and so this is Christmas, and what have you done?”

Well I’ve done the boy’s medication again and he’s done a full week of delayed intensification, so there.

For the last three or four days Kip’s been getting more and more clingy, less happy to walk or do anything really. But, and this is where I sound a bit too middle class for my own liking, he’s developed a real hunger for hot smoked salmon. This could get expensive.

Anyway, this is Christmas, and I’m pretty sure Kip had a rubbish time. The skin around his bum is breaking down a bit with small sores developing, so we’re starting on the expensive creams now (thank you for paying your taxes – this is what it gets spent on). Hopefully we can stop it getting any worse. It seems the best prevention and treatment for his sore skin is for him not to wear nappies. And we all know what legendary bowel control toddlers have…

Kip’s also a bit off his food (except the posh salmon obviously; why couldn’t he fixate on baked beans or cornflakes?) so dinner was “interesting” today.

I can’t wait for him to finish the steroids tomorrow, and we can have a whole week off and maybe he’ll recover a bit before the next block of Dexamethasone.

Clinic on Wednesday for yet more chemo (the stuff that looks like Tizer), so looking forward to a nice quiet day at home tomorrow where I’ll devour the leftovers, hopefully Kip and his sister will enjoy a film, and Sarah can finally put her feet up for a bit.

Happy St Stephen’s Day Eve!

Delayed Intensification – Day 6

A brief note because a) it’s 11pm on Christmas Eve and b) I’m a little teeny bit drunk and likely to embark on some long tirade about that Farage idiot…

Two full days of steroids ahead but so far all seems to be going to plan. Clinginess has increased but just so contented in the sling – thank you ErgoBaby.

Christmas is always an emotional trigger for parents, and I guess what’s got me right now is that I’ve spent a good bit of this year wondering if Kip would survive to this point. And in an hour he will have.

So utterly grateful tonight.

Merry Christmas.

Delayed Intensification – Day 5

Today’s nasty bits:

1. Clinginess is getting turned up to 11.

2. Drooping eyelid.

3. Paler than even his Scottish heritage can explain.

4. Not eating as much in the way of solids as we had hoped, but also breastfeeding has gone up a huge amount.

5. Runny poo and the loudest farts I’ve ever heard (adjusted for size).

Today’s good bits:

1. He’s still alive, which is an awfully big deal. Fifty years ago he wouldn’t have survived this.

2. We’re not paying for treatment.

3. Kip walked all the way from Colmore Row to Lionel Street, slightly more than a third of a mile. Not bad going for a toddler, and it included several ramps, kerbs and steps.

4. He still loves his music.

5. It’s Christmas in two days and we’re home!

Huge thanks at this time of year to everyone who’s come to visit, sent messages, asked the right kinds of questions and just been there for us.

Delayed Intensification – Day 4

OK so the schedule is starting to slip already; I’m writing Day 4 most of the way through Day 5, but it’s nearly Christmas and chaos reigns supreme.

Day 4 and the side effects are really noticeable as Kip is much more clingy, much more sleepy, off his usual diet and obviously not as mobile as last week. There’s a grumpiness, like he’s hungover (but obviously he isn’t). Skin is red around his bum, which happens in the more intensive parts of treatment, and we’ve got to keep an eye on it with plenty Sudocrem every nappy and hope it doesn’t require The Flaminal.

He got a bath in the evening before changing his central line dressing, which is becoming more and more unpleasant for him. Tearing a massive sticky plaster off his chest is never fun, but now he’s that bit more fragile it’s another upset. The line site still looks really good though, and maintaining good hygiene around his central line is absolutely vital these days; infections are so dangerous for him right now. 

And despite all of the obvious discomfort, the nastiness of the steroids and all the other interruptions, he’s still such a lvong boy.

And a technophile as well. I haven’t spoken in this blog yet about how amazing he is with technology. He knows how to work my phone, the tablet, the remote control; all in search of some cool music to dance too. He’s quite the DJ.

So, four days done, only another gajillion to go…

Delayed Intensification – Day 3

At home all day, there’s a small tremor returned that I hadn’t since the induction phase.

The boy is getting knocked about a bit now by the steroids and chemotherapy, a bit less confident on his feet and a bit less tolerant of the things and that were previously only annoying.

It’s going to be a tough eight weeks ahead I think.

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.