Delayed Intensification – Day 19

Day 19 was a considerable treat as, despite neutropenia, we got to meet up with the extended family on Dad’s side for a big celebratory new year meal, an hour and a half drive down the road.

Quite sedate through the journey, the boy got very clingy when we arrived and spent most of the day in the sling or being held.

But we still got to have fun, and it was a real delight showing off his progress to a bunch of relatives who’ve helped us to keep going with kind messages and support.

The weekends are a bit busier with the addition of Septrin (oral antibiotic) twice a day. If you want to make some money, buy shares in the enteral syringe market, because my goodness we’re blasting through them!

Delayed Intensification – Day 18

OK it’s all starting to settle in a bit now. Kip is three days into his last week ever of steroids and, aside from the crankiness and a slight tremor, he seems to be doing quite well. Mercifully, his backside is staying healthy despite some very runny poo. WHen we were in the induction phase, the skin around his bum broke down horribly and, because he was neutropenic, it didn’t recover for weeks.

This time, in part due to VERY frequent nappy changes, water wipes, Naty nappies and the glorious Sudocrem, everything looks nice and healthy (when cleansed of poo).

Even managed a temperature of 36.5C, which is nicely human!

Delayed Intensification – Day 15

I should have written this last night, but I decided to watch the West Wing instead. Without getting too political, I have to say it would be nicer to have Martin Sheen in the Oval office than what’s there right now.

Kip was in yesterday (Tuesday) for his second round of Vincristine and Doxorubicin through his central line at Birmingham Children’s Hospital oncology outpatients. One of the best things about going there is the rapport Kip (and we) have with the staff – a genuinely wonderful group of medics and nurses who have spent the time getting to know him, so now he smiles when he sees them. I guess for the benefit of the kids it’s vital to make the outpatient clinic as positive an experience as possible, and how much more pleasant to have smiling kids than screaming ones.

Kip was asleep when we got there, which gives us the challenge of trying to do his vital observations without waking him up – it’s pretty much impossible to take someone’s jumper off while they stay asleep!

All in the boy did really well, eating for ages (pulled pork and doritos, don’t judge me) then we went into town and walked around the museum for a bit. Kip loves it there because there’s a real echo and he could shout “ba!” over and over and over again.

Wednesday, day 16, we start the last ever stint of steroids, so we expect him to get clingy and irritable again in a few days, with the threat of broken skin and a poorly tummy too. He’s neutropenic right now as well, so vulnerable to infection and we have to rely on my nemesis, the thermometer. This will be fun…

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 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 2

Today was the big scary day of getting the big scary drugs, so I took charge and sent Sarah in to clinic while I stayed home.

Kip gets dexamethasone at home, in a frankly awkward 6.3mg dose, plus ranitidine, ondansetron and metoclopramide to counter the nasty effects of the dex (why they couldn’t just make the dex a bit nicer I don’t know. Or have it shaken into a fancy cocktail by the pool. I digress).

Those four are given at home though; today’s trip to town was for Doxorubicin (looks like Tizer) through a drip, and Vincristine both through his central line. The Doxorubicin turns his wee pink, which turns his nappies pink and isn’t particularly pleasant on his poor skin. Vincristine makes him sore, so it’s my least favourite of them all.

We’re already seeing the effects as he’s that little bit less steady on his feet, and a lot more clingy. In many ways it’s like the initial stages of treatment again, and that’s not a nice thought at all.

Today has been a day of tetchy grumpiness, cuddles and naps for him, and sugary snacks for me. Tomorrow, perhaps the gin will make an appearance.