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 27

A new one today as Kip was given AmBisome for the first time. His temperature isn’t staying below 38C enough despite 72 hours of the antibiotics, so we’re trying something new just in case he has mushrooms in his belly.

AmBisome, a trade name of amphotericin, is fabulously expensive – thank you for paying your taxes – and is meant to wipe out any fungal infections.

He was also due a dressing change (the big transparent plaster over his central line) but, because it looked a little bit hungry, he got it done twice. Kip hates having his dressings changes, and won’t even watch Hey Rugged while it’s happening.

We’re continuing to see a gradual improvement in his diet and activity, and he’s definitely showing more if his outgoing personality now. I think the effects of the steroids are beginning to wear off.

Bad stuff today is that we’re getting a bit of cabin fever bring stuck in isolation all week, and Kip’s temperature keeps sneaking over the dreaded 38°C.

On the other hand, he’s making us laugh loads, not least when he stares at the nurses with a very sceptical expression when they’re doing any kind of procedure. Can’t think where he gets it from…

Delayed Intensification – Day 22

AT LAST! At long long last, Kip had is last dose of Dexamethasone, that troublesome steroid that’s got such terrible side effects. I shouldn’t be too down on it, I mean it has saved his life, but I’ll be delighted for children with leukaemia all over the world when a more benign version gets developed.

Sadly Kip has been unhappy, clingy and lethargic all day and his hair is falling out too.

We took him in to get checked out and have been admitted overnight for fluids and observations. The worry is that he’s got a bit of diarrhoea and might be dehydrated. He seems very sleepy all the time. While the previous week of steroids was unpleasant, it wasn’t anything like as bad as this. Plus he’s neutropenic so we’re in an isolation cubicle.

Thankfully – and this is a bigger deal than you might think – there’s a remote control for the TV. Because people steal remote controls from hospitals. What a thing to do.

Delayed Intensification – Day 21

Wow, the end of three weeks* of this block of treatment! 

*Weeks are not quite as consistent as you might think – days change around every now and then, extra weeks are added here and there thanks to bank holidays, neutropenia and other miscellaneous matters.

Kip has been distinctly off colour all day, which we think is down to the steroids. Thankfully, the steroids are about to finish and then he gets a week off** to recover before the second stage of the Delayed Intensification block begins.

**It might be two weeks. And it might be no weeks as he might need platelets or a transfusion on Wednesday if his counts are low, and he’s neutropenic so we’ll never take it for granted that he’s at home rather than on a drip of broad spectrum antibiotics.

On the plus side, he’s really enjoying saying “ham” a lot.

Delayed Intensification – Day 20

Wow, nearly three weeks done! Today, another day with Septrin on top of everything else, has seemed like a series of short intervals between medication that mostly involved asking Kip if he wanted something to eat.

Today’s milestones include him saying “food” and “shoes”, and in context too, for the first time. Low points are mainly related to side effects from the steroids; his tremor is there and he seems so unhappy all of the time. Nothing we weren’t expecting, but that doesn’t make it any easier to deal with.

Kip had a bath this evening too, and we changed the dressing on his central line. The dressing, a Smith&Nephew IV300 ported dressing that covers half his chest, has to be changed weekly. After a good wash all over the torso with Octenisan (antimicrobial wash), we’ve got a few minutes to get the change done to minimise the distress for all concerned.

A quick splash of Appeel all round the dressing loosens the adhesive and makes the removal of a gigantic plaster slightly less bloody awful, but it’s still pretty rotten for the poor boy.

With the central line insertion site now exposed, it needs sterilising with the 3ml ChloraPrep which is a bit like one of those dishmops you get to put washing up liquid in, but smaller. And no scouring pad, obviously. This is usually the most unpleasant bit for Kip, but absolutely vital to protect him from infection.

By now, he’s usually started wriggling and stopped cooperating, so we have to put on the dressing, without touching the sticky side or the skin we’re putting it on, while he wriggles and protests. I’d imagine trying to put a string vest on an octopus would be easier. But with a bit of cajoling and brute force (not really), we get his line all covered up and clean.

With luck, once we’re established in the maintenance phase the central line can come out and we’ll all be spared this weekly drama. Until then, pass the earplugs…

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 14

Well it’s next year now, and what a good start to everything so far. We were woken after a rough night with big smiles and cuddles and the most interesting sentences from Kip.

We’ve had a good week off from the steroids and, while he looks a bit pale, it looks good for our return to the clinic tomorrow for Vincristine and Doxorubicin.

Sadly, the steroids start up again on Wednesday, but brilliantly it’s only for a week and then he never has to have them again. Dexamethasone seems like an instant hangover drug for children, certainly not something we enjoy giving.

Hopefully I’ll get his Beads of Courage updated and share a photo tomorrow.

Delayed Intensificaion – Day 12

Leukaemia has stolen many things from Kip and froom our family, and the treatment regimen has taken other things too.

We’ve lost the carefree joy of having a healthy child for one thing. It’s cost him happiness. It’s cost us holidays and trips and experiences and time at work and Kip making friends with other kids.

Chemo has cost him his hair, damaged his skin, disturbed his appetite and taste, delayed his development.

And now another casualty.

Since he finished the week of steroids, he hasn’t had a daytime nap.

It might not seem like a big deal but trust me it is. That was the hour or so a day where we got stuff done; the laundry got folded, the dishwasher emptied, emails and messages read, and even grabbing a bite to eat. Gone.

Thanks, leukaemia. Thanks a bunch.