A fun-filled day with lots of energy, but still hooked up to the pumps which restricts Kip’s movements a lot.
We got a full day without stomach cramps or sickness (genuinely the whole day!) and at the medical review everyone was very positive.
A visit from the teacher in the afternoon was my excuse to go for a walk and enjoy the glamorous surroundings, taking in the car park, the other car park, an office block and the magistrate’s court.
Kip really enjoyed playing Poo Bingo, which is a legitimate game and not some horrid new bathroom past-time he’s picked up in hospital…
There were endless re-runs of Top Trumps as well, so that might have to have an accident in the next couple of days! The great thing about Top Trumps is it’s nice and compact and doesn’t require a playing area. Even with those games, bits of reading and lessons, I’m still very thankful for our Amazon Fire Stick; Kip plays Top Trumps, gets interested in Lions Mane Jellyfish then wants to watch videos about them on YouTube.
A significant improvement today; Kip hadn’t had a fever in 48 hours, so we could discontinue the Meropenem antibiotic, hopefully giving his intestines a bit of a rest. As the intravenous feed is titrated and tuned to meet Kip’s nutrition needs, he can eat normal food just for the fun of it.
A mixed diet will really help his digestive system recover, but it seems at the moment he just wants chicken and Doritos. I’m really not convinced a completely beige diet is the restorative we’re hoping for, but so long as he’s happily consuming calories that aren’t too trashy we won’t complain. Yet.
The changeover continues every two days, so Sarah and I are passing each other with big bags full of toys, clothes and food in the foyer of the hospital, a brief hug and handover and then back to being strangers.
Small things we can be thankful for include the massive window that affords a fine view of… a building site, but to the sides we can see across to the far side of the city. Most importantly, we can see the other side of the ringroad and wave to our friends as they leap around outside the Salvation Army building. To Kip and I it was a nice interaction, but to anyone passing by it might have looked a bit unusual!
Kip has also been enjoying playing Ocean Top Trumps with anyone who remains stationary for more than a few seconds. Somehow he manages to keep hold of the great white shark and blue whale cards all the time, and I inevitably suffer the indignity of tube worms and sea cucumbers.
Hoping to hear about viral loads coming down, T-cells coming up and weight coming back.
Sarah’s full day in the hospital and mine at home with Millie collided as the stock of nappies dropped to dangerously low levels, requiring a supply mission.
Two packs of Naty into a bag, and a couple of other treats, Millie on her bike and Dad and I jumped on to a couple of Voi scooters for a ride into town, meeting Sarah at the door of Waterfall House for hugs, then we went off to explore the city on two wheels.
A note for drivers in Birmingham; you are among some of the worst I have ever seen in the world. Audis, BMWs and Mercedes’ (always a German-made car) being driven by utter idiots with absolutely no regard for the safety of others. Genuinely, a lot of you deserve to have you cars crushed and yourselves flung into the sea, you utter imbeciles.
Millie handled herself brilliantly, showing great awareness on the roads and such a lot of energy. We were caught in a rain shower as we neared home so the last 10-15 minutes was a bit rotten, but we got home and wrapped ourselves up in warm, dry clothes.
Kip’s day was pretty good too; a little bout of gut pain, one bit of sickness but otherwise he’s managed to put on some decent weight again with the updated IV feed. There are two bags going now, plus the beige shake up his nose (am I selling it? anyone?) giving him a 600g gain over two days so he’s up to 15.5kg.
The Epstein-Barr virus he’s been struggling with is reducing but only slowly, so by Monday we might have to talk about commencing the rituximab treatment to clear it out. It’s hard to tell if it’s a necessary step because it comes with complications of its own that might extend the stay in hospital. Like everything at the moment, we just don’t know what’s going to happen.
Kip continues to be loving and funny and excited and chatty and charming to all though.
Changeover Day arrives again, and a marked difference from yesterday; Kip woke up full of energy and good humour, and a big appetite.
A bowl of Frosties was summoned and steadily consumed as we played Top Trumps. Kip suspiciously won nearly every round; I think he cracked my code of “I’ll definitely win this one so long as you don’t choose Top Speed”…
Lots of laughs were had, though the occasional bit of abdominal pain ruined the mood and brought on a few tears as well.
Kip enjoyed a mid-morning visit from the education team again, which gave Sarah and I a chance to have a twenty minute walk around the side streets as we did our handover. During admissions, this counts as a date! You have to adjust your standards a bit when your little one has cancer…
We wait for a 48 hour gap with no fevers (which would be Sunday morning) so we can get him off the antibiotics, for his weight to come up again (from a terrifying low of 14.9kg, up to 15.5kg this afternoon), and for the viral count of this Epstein-Barr to reduce significantly. If it doesn’t, we’ll have to start him on a new medication.
But that’s a problem for Monday, and today has more than enough of its own.
A full day of lethargy, tiredness, fevers, abdominal pains, fevers, paracetamol, fevers and sleeping as much as possible.
For all the effort put in I got only one smile from Kip all day. He was really struggling, which is understandable given he must feel absolutely rubbish but can’t express how he’s feeling.
One high point for him was a visit from the teacher, who brought him some activities (stuff that we already have but it’s not a parent making him do it so it must be fun..!). That also gave me the opportunity to get outside for twenty minutes and break out of the little ward bubble.
Having a long admission is really difficult for the four of us, so it was a real boost that Dad was able to come down to help for a few days; a not-insignificant journey of 600+ miles by ferry and train from Shetland. We’re so luckythat, despite distance, family can be around to help.
Lab tests show that the virus count is coming down, slowly but steadily. No nasty bacteria have grown in the Petri dishes either. What’s annoying is we haven’t been able to find a cause for the fevers.
Hoping for improved temperatures tomorrow, and for Kip to have the strength, energy and comfort he deserves, and maybe even a few laughs!
You would think being the parent in hospital with a child who is almost exclusively in his bed and mostly asleep then I’d have time to read, write, work on my zen, contemplate the myth of reality…
In truth it’s mostly tidying and trying to persuade Kip to eat some jelly until I’m too exhausted to construct a meaningful sentence in my head.
Changeover Day with Sarah getting home, and getting up to speed with Kip’s medications, routines and requirements.
Delightfully, his dressing had already been changed (the one that covers his central line, you can just see it poking out the top of his vest) so all that really had to be done was getting him a wee bath. That’s an appropriate choice of words because, just as I was lifting him out, he did a wee. Great stuff.
I was really pleased to see him eat a bit; so jelly, followed by garlic bread, then a potato wedge, a taste of ice cream. Goodness knows what Dr Kellog would make of it all!
A decent sleep was denied by fevers; starting in the mid afternoon they basically lasted all night, even with paracetamol. It was really tough, we’re used to seeing the temperature come down nicely with paracetamol, especially when it’s given through the line rather than swallowed. Fortunately all his other physical signs (blood pressure, pulse, oxygen levels) were completely fine, which was some reassurance.
Then through the night the various pumps (four of them!) all needed adjusting and monitoring and resetting, and Kip’s innards kept cramping and venting (three changes of bedding!), so I think the longest sleep was an hour without interruption.
Coffee. Coffee is the answer. And maybe some sort of cure.
A full day in the hospital with reviews from haematology and gastroenterology teams. Kip’s weight is a concern because, what with all the diarrhoea and the damage to his gut from, well, four years of being nuked with antibiotics, chemotherapy and the recent radiation. The team (and us) feel that he’s just not absorbing enough nutrition from the feeds, which gives himthe runs, which reduces absorption, which makes him sicker, so he gets a temperature, so he gets antibiotics that knacker his guts… and the vicious cycle continues.
The deal is that the feed going through the tube up Kip’s nose is getting massively reduced, and for a good while he’ll be getting his nutrition straight into his bloodstream. Parenteral nutrition (PN) contains a mix of sugars, fats, vitamins and minerals that’s drip fed through his central line, bypassing his throat, stomach and intestines.
For the next week at least, we’ll be in the hospital trying to get Kip’s weight up where it should be and we can start moving on with the recovery.
As we start figuring out where we are, the poor laboratory team were overwhelmed with samples; wee, blood and poo to search for whatever nasties might be causing the current troubles.
If the side effects of leukaemia were a person, it would be H from Line Of Duty.
It started off very nicely, went a bit downhill, then was pretty good, then a little unnerving, then quite bloody hell and stayed there until midnight.
The great start was thanks (again) to those fab people at Billie’s Fund (please visit their website here and their follow their Twitter here) who send some brilliant Lego sets for the kids’ respective and adjacent birthdays. Both Millie and Kip come alive as they build and play together; our heartfelt thanks for these gifts.
Millie went to her homeschool group mid-morning with Sarah and I stayed home with Kip. We learned about some fish evolution, a bit of sums and some snacks. Kip the started complaining of tiredness and snuggled down a bit in anticipation of our afternoon appointment.
Once at the hospital, Kip started to feel gradually worse and worse with abdominal pain, so I stopped his feed and shortly after there was a loud noise from right in the middle of him, and a hurried trip to the loo where we had the least comfortable but experiential and aromatic hug ever.
After five minutes of intestinal tuba impersonations, he felt a lot relieved – Sarah and I are wondering if he needs a break from the Peptamen feed – and we settled in for a game of chess on the tablet for ten minutes, then it was time to head downstairs for his planned CT scan.
I remember his first scan in 2017, when he was desperately unwell and quite terrified of the machine but too weak to wriggle out of it. Now with some briefing he’s quite calm and he knows when to hold his breath and when he can relax. I mean, it’s still not exactly fun for him, but it can be endured.
We then returned to outpatients clinic and waited on blood results and review with the medic. His neutrophils turned out to be a bit high, which suggests there might be some kind of bug, but it’s something to keep an eye on so we agreed to go back in on Tuesday as usual. And shortly after, we headed home.
A quick fifteen minute scan appointment filled the afternoon from 1pm to 6pm.
Once home, we got a bit of dinner, and Kip wanted to go to bed, not unusually. We looked forward to a quiet evening at home, we might even get to finish watching Sewing Bee…
Until Kip cried and complained of feeling sick. Five minutes with the sick bowl, hugs and reassurance and then… he felt a bit hot.
Bags packed, everybody in the car, Millie dropped off with Wendy and Mike while Sarah and I get Kip into the Emergency Department.
Sarah stays in (we know this will be a two day admission for broad spectrum antibiotics, further knackering Kip’s putative digestive system), I go and collect Millie and leave the house in an absolute state until the morning.
By this time, of course, Kip’s temperature comes down, stays down all night… but the antibiotics continue as per protocol. We really can’t wait for those damned T-cells to recover and the central lines to come out, so that temperatures can be dealt with at home by the application of Calpol like normal humans do.
Day 112, a full sixteen weeks of daily blog posts and it’s just occurring to me that when we don’t have an emergency to report my brain kind of shuts down a bit! I write this on Monday morning and can’t really remember much of Sunday (no, I haven’t been drinking!) except it involved lots of tidying up, garden fun and something for dinner…
In short, it was one of those days where it almost feels like there’s nothing wrong.
Kip’s had loads of energy for running around the garden, and enjoying his food as well.
We’re just waiting for these T-Cells to get up to recovery level and then I’ll take a break from the daily blog (and probably focus on a bit of fundraising for some of the amazing charities we’ve been supported by).
If you want to know a bit more about T cells, the wiki page is here – the short version is that these important cells, like neutrophils, hunt down and destroy invasive cells (one type basically explodes virus-infected and cancerous cells, which is pretty cool). There’s a lot of detail we could fill our heads with, but at present we’re more interested in eating cake and playing silly games!