Maintenance – all good so far

We’re a fortnight in to Maintenance, and the smiling chipper Kip is doing amazingly well – so this blog has gone a bit quiet since there’s not really anything new to report.

Sarah and I are making our way back in to work, but not taking it too fast. Hence, we’re on holiday now. This is our summer holiday from last year… four nights in CentreParcs celebrating the fact that Kip can go swimming with his sister, and my parents as well.

Bloods are all fine (no numbers but it’s all good) so his dose can emain for another fortnight before he has to get bloods tested again.

Last night, for the first time in months and months, Kip got to play with a dog. What a brilliant time.

Delayed Intensification – Done!

Well done Kip, well done all around him – professionals and family alike – on reaching the end of DI and today’s excellent news:

Hb: 114

WBC: 4.7

Plt: 250

Neuts: 2.2

These four simple numbers show Kip is well enough to enter the Maintenance phase: Oral chemo at home, no planned admissions, and one short operation between now and the end of treatment.

Kip, for his part, has been an absolute riot of fun at home, talking and charging about and, today for the first time since diagnosis, going for a swim with his proud and relieved parents.

It’s not all over, but the worst bit is.

Delayed Intensification – Day 64

Today is nine months since Kip started treatment for Acute Lymphoblastic Leukaemia.

This was him then:

And this was him this morning:

Today he had his last intravenous dose of chemotherapy; they brought his dose of vincristine forward a day so his cannulae could be removed that bit sooner.

After I don’t know how many admissions and I don’t know how many days and nights in pretty much every ward in the hospital, Kip came home and played games with his sister.

Now two weeks of recovery at home (please no fevers!) and then he starts maintenance.

So thankful for everyone and everything that has kept him going.

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 61

Friday was a long day continuing in isolation. Kip has been pretty good but was sick a couple of times, the second just before he went to sleep and he threw up all over the freshly made bed. Thanks, son.

There’s a bit of debate about how to continue treating this bug – do we continue with the Tazocin or do we move on up to Vancomycin?

Do we take the central line out?

If we do, does he get a cannula or a subcutaneous port?

Feels like a difficult decision ahead.

Delayed Intensification – Day 60

Tazocin goes in, and again, and again. Kip is just dancing and playing around, happy as a pig in poop. Temperatures are stable, safely below 38, there’s none of the diarrhoea we’ve had in previous admissions and the anti-sickness meds seem to be doing their job. He ate his own weight in bolognese and Doritos, drank well and was a general delight all day.

THere was a bit of false hope when some results from microbiology suggested that the E.Faecalis detected in the cultures might have been an external contaminant, but sadly it turns out it’s in both lumens of the central line. A second set of bloods was taken to check if the Tazocin is working to kill the infection. External signs would suggest so – he’s well in himself and hasn’t spiked a temperature since admission. Results are due late on Saturday afternoon.

We might be in for a few more days yet. Millie visits to watch world events on CBeebies.

Delayed Intensification – Day 58

Vincristine and Pegasparginase go in today. Kip is venting snot out both nostrils and on the warm side but nothing too bad. We go in to outpatient clinic in the morning and have a fine chat about the future, weigh him at a respectable 10.98kg and it’s in to the wee room for a push of vincristine into his central line followed by a painful but quick injection of peg into his right thigh. He screams, the student nurse observing winces, we’re all about to have a blubber but then he’s suddenly fine again.

We have to wait an hour before going home just in case there’s a reaction. By half past one, his temperature is 37.8, a bit close for comfort but OK to leave.

We go home.

We are home for an hour and a half.

He reaches 38.3.

We go back in.

Nasal swab, blood cultures, sit in a side room because of his runny nose and finally, at six o’clock, we get a bed in a cubicle in Paediatric Assessment Unit (PAU). The tazocin drip goes up, he gets fluids and paracetamol and then we wait. Another two days in here.

There should be frequent flier miles, mandatory upgrades. A jacuzzi. But no, it’s another cubicle on another ward to be looked after by another set of nurses and medics with more observations and medicines and time tied to a drip.

On the plus side, we got told our date for his final treatment – 24th October!

2020.

Delayed Intensification – Day 56

Just a regular Sunday, Kip has been delightful but a bit clingy as he recovers from this cold.

Today though I wanted to write about his big sister. Since Kip’s diagnosis, Millie has been the most amazing daughter I could imagine; she’s been loving to him and to us, careful to make sure he is OK and thoughtful and mindful of caring for her brother. She’s been so loving towards us too through what must be a baffling and frightening time – she’s far too young to understand the complexity of Kip’s diagnosis or treatment, and she must pick up the times when we’re scared or stressed or frustrated.

Millie, in the chaotic months since diagnosis, has had planned activities cancelled at the last minute and several times had “surprise sleepovers”. She’s started school. She’s had to sleep in her own bed all night. And she’s had to put up with being nagged incessantly about hand hygiene when Kip has been neutropenic.

Still though, she remains the same headstrong, passionate, active, confident and individual person she has always been. She has taken up archery (“I’ll show you what to do Daddy because I’ve hit a bullseye and you haven’t even done that yet”) and running, wearing her Superman top and sprinting as much as possible to make the cape flap behind her dramatically. Last October she ran her first race to raise money for Birmingham Children’s Hospital. And she’s four.

Our star, our champion, our brave and determined little fruitcake.