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!
Another early start, this time because Millie was hyper excited about her 8th birthday!
We began with waffles and presents, then snacks and presents, then after lunch headed up to Sandwell Valley so Millie and Kip could splash in puddles and streams and the lake.
A special treat seeing two geese with their four goslings, the first we’ve seen this year. They allowed us to get very close, and before long our brood and theirs were happily splashing at the waters’ edge.
Straight home (with remarkably dry feet!) for tea and cake, pizza for dinner, Lego and eventual bedtime.
Kip’s energy levels seem to have picked up a lot, and Sarah and I are really hopefull that it’s a sign this EBV is being defeated and potentially T-cell counts will get to the magic Recovery Number.
He was able to run around a good bit outside (though he’s nowhere near where he was back in October before the relapse and chemo started up again), he’s been very chatty and enjoyed telling everyone he can that he’s now five.
Sunday will be another day at home ahead of a planned CT scan on Monday, review, blood tests and all of that. I’ll try and make the day an interesting read for you!
This is what I woke up next to this morning, twice! Once at half past four, when he wanted to talk about breakfast and excavators and The Clangers and having a poo and vikings, and once again at an all together more sociable 8:15am.
There’s not a lot to report about today; the bins were collected, food was eaten, drinks were drunk, toys were played with, and Millie got completely hyper in anticipation of her 8th birthday tomorrow!
A delightfully “normal” day for the family, and very grateful we managed to avoid another trip to Outpatients today.
Tomorrow will be all about sugar limitation. There is no hope.
After a difficult night with children waking up at various time, Kip was awake at 5:25am and wanted to go into clinic right away – “because right now my energy is at 3,000%”” – but I managed to negotiate a bit more sleep.
Too much in fact, as he didn’t wake up until nearly quarter to nine, so it was a massive rush getting him dressed, into the car and up to Outpatients in time for his blood test. This was the review check for that pesky EBV that suddenly shot up, but the team took the opportunity to check him over as well. Not quite the full MOT, but enough to know if there might be problems.
Weight, oxygen saturation, blood pressure, pulse, temperature, respiration all checked and all absolutely fine.
We were the only ones in that morning, so we had the run of the place and, most importantly, Kip had the opportunity to chat and play with the nurses like he always used to. His sense of fun and humour were front and centre, and such a joy to see again.
Some disappointing news from his blood test from Tuesday showing the level of T-Cells had dropped again from 0.21 to 0.20; seeing the number travel backwards is deeply frustrating. Life is kind of on hold until that number gets to 0.3.
Nonetheless, his energy was apparent as he fairly ran out the building and most of the way back to the car, though by this time his energy “is down to 10% and maybe zero percent” as he flopped into his car seat.
The afternoon involved a second trip to the Childrens’ Hospital for an ultrasound; Sarah took him this time which she reminded me was her first trip into the radiology department since before Kip’s diagnosis, nearly four years ago.
Back then we were waiting uncertainly to find out the cause of some mysterious lymph nodes, and while there we got our first real exposure to children with cancer and the prospect that Kip might be really sick too.
The initial results back then ruled out tumours and we both felt we’d dodged a bullet, but a week later we were admitted as an emergency to begin induction treatment. Not great memories at all.
In the evening, the call from the registrar came to say the viral load of the EBV had fallen slightly (from 100k to 96k) which was good enough news to give us all Friday off, so no planned hospital visits until Monday.
Apart from the hospital visits, Millie and Kip were invaluable help in the kitchen making the dough for Pizza Night.
With all that excitement, we almost missed that the day marked the milestone 100 Days Post-Transplant. Although the transplant hasn’t worked as we thought, it’s such a relief that Kip is still with us and appears so healthy.
A day at home awaiting the results of yesterday’s lumbar puncture and bone marrow aspiration.
Good news – no sign of leukaemia in his spinal fluid (which is where the relapse was discovered back in October), his weight is going up, his appetite is doing well and his energy levels are starting to pick up.
Bad news – the blood results showed a significantly higher load of EBV (Epstein Barr Virus, responsible for glandular fever amongst other things, and one of the most common viruses in humans so no escaping it!).
We need to go in for further blood tests to see what’s happening.
Here’s another throwback picture, from when Kip was just a day old.
Today was another trip to clinic. Some revisions of medication, some encouragement of weight gain. A mystery rash mysteriously appeared, got worse, and then just as mysteriously went away again.
Kip had another “special sleep” with a lumbar puncture and bone marrow aspiration again. These are to check that the leukaemia hasn’t come back (please no) and see what’s going on with his bone marrow.
Once he came around, he was absolutely ravenous, so Sarah had her hands full basically shovelling food into his mouth like a stoker on a steamship.
There were some slightly concerning numbers on this low-level virus he had shown over the past fortnight – the Epstein-Barr Virus responsible for glandular fever was kicking about and it looks like the level was going up. Something to keep an eye on over the next few days.
Kip slept a bit later than usual – a bit odd as given the past few days of excitement I expected him to be up at the crack of dawn demanding presents and Coco Pops – and we had a brilliantly joyful morning playing together.
He got his dream gift from his Aunties – a ride-on digger – and both kids spent ages typing all kinds of bruck on the floor and account it up again.
We were entertained on WhatsApp by family and a couple of friends at the end of the garden path.
Combined with no signs of sickness, no discomfort and generally more energy, and that he’s put on a bit of weight at last, today is down as one of the best days of the year so far!
Thanks everyone for sending birthday wishes to Kip. Now we just reset the decorations for Millie’s birthday on Saturday!
Sunday was full of excitement, as it was Kip’s last day of being four!
He’s tolerating a lot more of the milkshake feed – up to two bottles a day – but that’s at the cost of his general appetite. However, he’s kept it all down and hopefully that means he’ll start putting on weight again.
Kip’s excitement at his birthday reached fever pitch right at bedtime – he could barely get through one line of his story or his lullaby with saying “one more sleep until I’m five!” and “it’s my birthday in the morning!”
He also had to have another Covid swab this morning – right after breakfast, which is a horrible time to stick something in a little child’s throat – but after that initial unpleasantness he carried on to a happily uneventful day.