What a great morning, cuddles and smiles and running around playing games.
Millie and Kip were really helpful in the garden – helping me to stack firewood to dry out for next winter – and once we were done they got back to the serious business of playing on the rope swing and jumping on the tractor tyre!
I took Millie off to her little home education group meeting (a little nature reserve I’d never been to where a friend introduced me to the Bristolian concept of giving a newt a “smooth” – there’s not enough space on the internet to give this the proper context).
After a coupl of hours, I got a phonecall from Sarah saying Kip had become ill quite suddenly. He was tired and lethargic, had been very sick and wouldn’t stop vomiting long enough to have the anti-vomit medications – several backward steps in a very short time. I rushed home, we quickly got Kip back to the hospital we’d left less than 24 hours earlier, and he’s staying in again tonight.
His blood pressure was seriously low, so he was given a big dose of IV fluids and made a quick response. The working theory at the moment is gastroenteritis (although it could be other things). He had a fever in the early evening, and so we’re likely to be in for another few days at least.
You might notice a slight change in the picture above; Kip doesn’t have a tube up his nose. Plus, he’s obviously modelling for the IV pump catalogue.
Changeover Day this morning – Sarah went home mid-morning and I settled in for a stay of a couple of nights, which turned into a stay of six hours because – drum roll please – we got home today at half past four.
Straight in the door, into Millie’s newly constructed den for a short play before – second drum roll please – a hearty lasagne for everyone!
The team were very happy with Kip’s health over the last few days. While obviously not cured and totally healthy, his kidneys seem to be functioning well, there’s been no sign of infection or illness, no nasties grown on the cultures and his appetite returning makes us think that perhaps the milkshake meals he’d been having for the last few weeks might have been upsetting his guts a bit.
Kip did end up getting a new tube up his nose today though. The previous one had been in just shy of a month and really needed changing, but it was nice to be able to give his skin a couple of hours break from the dressing.
Kip denies he’s brave when dealing with the tube going up his nose – it’s a horrible procedure, really uncomfortable and makes him gag, cough and feel like he’s choking. I have to hug him tightly, partially for reassurance, but mostly to keep him still. I tell him how much longer it will take and keep reminding him to swallow, and the procedure is done in about forty seconds, but it must seem like an eternity for him in that moment.
People often say “kids are resilitent, they soon forget it”, but I can assure you Kip remembers what it’s like long after it’s happened. We have to give him plenty advance warning it’s going to happen, prepare him for the discomfort and reassure him through it. I’m certain that, even in the best case scenario, he’s going to need therapy to deal with the emotional scars this hateful illness leaves.
But with all that, I look at this metre-long, 18kg child who’s not even five yet processing and accepting what he has to go through with a maturity that puts us to shame.
Second full day in hospital sees some encouraging signs for Kip’s kidneys; he’s been hooked up to intravenous fluids so all the nasties are getting flushed out a bit better.
Having the fluids IV in this way is also taking a bit of the burden off his stomach, and so he’s been a bit less vomity.
And he even got a bit of appetite back – and grumpily demanding that the nurses bring him lasagne!
His favourite activity for the day has been a bit of water play, skooshing the syringes into cups, sooking it up again and squirting hither and yon no doubt, with the odd drink of it in between.
He also had a video call with his Granny (get well soon!) and Grandpa up in Shetland – coincidentally at the same time as Millie and I called up there too, so there was a chat between Millie and Kip via their grandparents 600 miles away holding their phones together!
Changeover in the morning and we’ll start to figure out how we move on from here.
On Thursday night, just after 11pm, Kip made a little whimper so I went to check on him. Complaining of a sore tummy, his temperature was just above the fever line, so off to the hospital we trotted.
Naturally, as soon as we got to the hospital, the fever went away and he slept soundly (except for when we had to do a Covid swab up his nose, which got a predictable reaction).
After eight hours in the paediatric assessment unit (PAU), we were taken to a nice room back on Ward 19, where Kip spent all those weeks several weeks ago.
The nurses and domestics greeted him like an old friend, and Kip was wheeled down the corridor on a bed, sat upright and surveying his domain, and shouting “smelly pants” at everyone.
I escaped mid-morning to catch up on sleep, Sarah took over and, after dinner, I got to enjoy a water fight with Millie in the garden.
Initial suspicions turn to a bladder infection, but it’s too soon to be conclusive.
What was good though was finding out that, after last week’s bone marrow aspiration, there is no sign of leukaemia. We still don’t know if any donor cells are hanging in there or if his own immune system is working properly, but for now there’s no sign of cancer, which is very welcome.
An excellent day, Sarah took Millie and Kip out to enjoy the countryside while I stayed at home waiting for two delivery drivers to turn up.
In other excellent news, there was no puke today.
In further excellent news, Kip at a bite of apple (after I had to wash and peel the entire thing) and then a couple of mouthfuls of macaroni cheese. This is further proof that my cooking is the absolute boss.
Playtime in the garden was great as we finally got a bit of warmth in the atmosphere.
Kip’s still experiencing dry skin on his feet and hands as an after-effect from all that rash horribleness a couple of weeks back. His face, happily, is good enough to get painted!
Every day now is a day working towards recovery and hoping as much as we can for his bone marrow, of whatever nationality, to start functioning properly. I’m going to keep this blog going until we know. You might have to put up with some vague posts as I essentially try and fill it up with interesting stuff while we’re just waiting. But if you’ve got any questions about stuff, chances are others want to know so go ahead and ask them in the comments, on Facebook or Twitter and I’ll try and answer with a suitably level of accuracy and silliness.
Clinic visit today. And that’s not a kind of “we popped in for tea and scones and socialised with all our chums”. It’s driving into the centre of town at rush hour, finding a parking space next to a building site and some exceptionally dodgy “housing” that I used to have to visit in my day job, heading in to clinic to be kept in a small room having bloods taken and central line dressing changed and waiting until the medics come.
A big annoyance, and I realise this may not seem so serious considering everything else, is that there is no remote control for the TV. There is a wibbly button on the back that’s meant to switch it on, then you wibble the button around to select “Freeview” and then nudge it upwards from BBC 1 (channel 001) to CBeebies (channel 202). The truly annoying part, however, is that the reason there is no remote control is because somebody stole it.
Somebody stole the remote control from a childrens’ haematology outpatients room.
They stole a remote for a television they almost certainly didn’t have, and stole it from a paediatric cancer unit.
That, right there, is the definition of an asshole.
Kip had his central line dressing changed again today. It should normally last for a week, but for some reason the dressing needs changing every 4-5 days, probably because of the skin cream we have to put on him. It’s not a procedure he enjoys (it’s a sticky plaster that covers a quarter of his chest – nobody would enjoy it) but he understands the need for it, and I’ve got my technique down well enough that he’ll insist I do it; this is great for my ego.
We also got Kip hooked up to some IV fluids which gave his tummy a rest from the demands of flushing his kidneys, and he was all the happier for it.
Two sets of bloods were taken; the first to establish the overall health of his blood, liver and kidneys, and the second to start looking for signs of T-Cell recovery.
Kip’s kidneys are doing a bit better, but the numbers are still just above the high side of acceptable, so we continue plugging on with our intensive regimen. We also found a bacteria in his urine, so a new antibitotic was added to bump that off.
The sunshine-y news is that Kip’s spinal fluid didn’t show any cancer cells* and his bone marrow “looks normal”*
We are still waiting for confirmation of the sample taken last Tuesday but it looks kind of positive*.
The other sunshine-y news is that Kip hasn’t been sick today at all. I will claim ALL of the credit for this, obviously.
*This result does not mean Kip is cured, it just means that they haven’t found a cancerous cell. Leukaemia might still be present, or it might be gone for good. This is one of the uncertainties we are living with and will continue to live with as long as Kip lives.
Young Pirate-Boy here had a very active day with his grandparents and the garden, hanging out in the hammock, swinging on a rope and charging around.
He even ate a bit of an ice lolly, which added to the 1/9th of a digestive biscuit from yesterday counts as a relative feast!
Thankfully an early-ish night for him so he has plenty energy for outpatient clinic tomorrow. We get to find out if he’s had enough fluids, how his kidneys are doing and maybe even some preliminary results from last week’s bone marrow aspiration.
We’ll be in a small room for a few hours, hopefully without spewing into a crisp packet this time. And maybe even avoiding Paw Patrol…
We ended the week with snow then sunshine. Millie went wild in the garden, and Kip stayed warm inside but still managed plenty of active play. My favourite bit of today was his race track playmat – his Lego pizza van seemed to have gone out of control and smashed through an innocent crowd of velociraptors.
They played together as well, building a running track up and down the stairs, coned off with a bunch of takewaway espresso cups that we’ve unaccountably managed to gather in our arts and crafts box.
Sarah led a major effort to get enough fluid and feed into him today, valiantly chasing him down and persuading some water through the tube up his nose. Keeping on top of medications and timing the anti-sickness meds to prevent vomiting is an unrealised goal as yet; we’ve tried some different timings but still had a couple of episodes with the sick bowls. We’re hoping that Kip’s kidneys are doing well enough to keep him out of hospital; we’ll have some answers after clinic on Tuesday.
Anyway., tomorrow is the start of a new week and we go into it with as much optimism as we can muster. Thanks for all your support and messages, we hope to have news (good or bad!) soon…
A really good day at home. I took Millie to her athletics in the morning and that was the start of a relatively standard day.
That is to say, normal for us is not particularly normal!
We’ve had a bit of sick today, once in the late morning and once again late at night. It’s really frustrating because we’re trying hard to get enough fluid and food into him to protect his kidneys from the effects of the medicines…
We put the food through his NG tube at the best rate we can manage, but if he’s sick, we have to up the rate, which makes it more likely he’ll be sick, which means we have to push the rate and…
Kip has periods of hyper-energy when he wants to wrestle and play and run around, and other moments of feeling completely wiped out.
We had some magic moments today, not least early this morning when he came and tucked himself into bed with us. Games in the garden as usual, all the sofa cushions thrown on the living room floor, tacos for dinner and compulsory Octonauts.