Kip’s fevers didn’t resolve and he was remaining lethargic, really not himself at all.
He was reviewed in clinic on Tuesday and we all agreed he needed admitting for diagnostic tests – he should have been showing some signs of recovery but if anything he’d got slightly worse.
That meant an ultrasound scan, a CT scan and, to be done under a general anaesthetic, a lumbar puncture, bone marrow aspiration and the fitting of a new central line.
The ultrasound was a particular horror. I know enough to notice something abnormal, but nothing like enough to interpret what’s on the screen. Safe to say a big round shape scared the daylights out of me, with good reason.
The thinking is that there are lesions or abscesses in Kip’s kidney, liver, lungs and spleen. Most likely cause is a fungal infection, which falls into the “serious but treatable” category.
More tests are required, and a biopsy might happen next week.
A more complete update will come soon, once I’ve caught up on sleep!
Meanwhile Kip has been started on a powerful antifungal treatment which he’s tolerating so far, and he’s been winking at the nurses too!
Well the big laugh of the day was discovering the Disney filter on Snapchat, and Kip was full of laughter seeing himself transformed!
The general bloody-hell-ing continues however.
So in the last post I updated you on his operation to take out the central line and port we’d relied on for the giving of medicines. He had a cannula in his right hand for the administration of intravenous antibiotics (watch me show off the big words, I’m a nurse you know…) but by Thursday that had stopped working and become very uncomfortable for Kip. We had to take it out (more like I had to take it out because I’m the Dressing Whisperer apparently) but, with more antiobiotics required, he had to have another one put in on his left hand.
That was not a happy procedure; two medics and myself holding his arm super still as the needle went in, a small puddle of blood on the bed, lots of tears and a very unhappy little boy. The simplicity and convenience of the central line was harshly apparent as we struggled further to get medication into him in a pain free manner. Spoiler alert, we couldn’t. Every dose was uncomfortable with a scratching pain that really distressed Kip. At one stage he even took over the syringe to see if he could do it in a way that hurt less, to no avail.
Kip’s fevers continued into the Saturday morning but by the afternoon they stopped. With the promise of h*** if we had 48 hours below 38 degrees, and we fantasised about immersing Kip in an ice bath for the weekend.
On Monday, a phalanx of physicians came in to review and determined we could go home that afternoon. Cue packing, cue organising transport, taking out the cannula, dealing with the tears, reassuring Kip, remembering to unplug all the electronics, collecting medication and we went home. Kip was full of joy seeing his Granny, Grandpa and beloved big sister Millie.
Tuesday was a pretty good day at home, some fun activities but we could see Kip still recovering from something, a bit of lethargy and tiredness as one would expect.
Then in the early hours of Wednesday morning (today) he spiked another fever.
Now we used our zero-plumbing privilege and gave him a dose of paracetamol before deciding to call the clinic in the morning. They called us in, and the procedures began.
Kip had to have bloods taken, which was another distressing needle encounter, and be swabbed all over in case of Loathsome Diseases (all negative). We agreed to stay in but not start antibiotics unless he got another fever.
Which he did, about an hour later.
Cue another needle for blood cultures, and a bed back on Ward 19 where all this Stem Cell Transplantery began back in January.
So far we’ve avoided having another cannula fitted (after, I admit, a fairly robust discussion on the merits of hammering him with IV antibiotics) by arranging for a different antibiotic to be given by injection into his thigh. Kip is as thrilled with this as you would expect.
I’m now sat typing this on The Chair That Is Not A Bed about ready to collapse into a sleepy fantasy of where it all went wrong. Whoever choreographed this dance is clearly drunk.
Wednesday 9th June was marked in the diary a while back as the planned date for fixing the plumbing – Kip’s double-Hickman central line and venerable old vascuport were scheduled to be taken out in what, to us at least, seemed like a momentous step forward in Kip’s recovery.
Everything was going to plan as well. Until Monday, when Kip spiked a temperature and we had to go in to the emergency department (again), have bloods taken (again) and have The Daddy of Antibiotics infused for 48 hours minimum (again) and get admitted to the ward (again). We’re getting very good at this, just at the stage where we’d be hoping to never need to access that wisdom anymore.
I was astonished just how busy the emergency department was; apparently nobody can get to their GP so every cough and sneeze is turning up in a confined space to share bugs. The poor staff are quite overwhelmed right now, but still were diligently caring for Kip.
We got a room on Ward 18 fairly quickly and Kip was settled in bed and fast asleep by 10:30pm. First things first, I unpacked and made sure we had decent WiFi, got the Amazon Firestick hooked up ready for the next day and got myself off to sleep in – ahem – A REAL BED! which had somehow missed the Cull On Comfort that left almost everyone else with a Chair That Is Not A Bed. Given the circumstances I managed to sleep very well indeed.
Tuesday was very good overall, despite persistent fever through much of the day. Kip got multiple visits from his favourite nurse and favourite teacher throughout the day. The doctors confirmed that, despite his temperature and the lack of explanation for it, we could go ahead with the planned surgery.
That happened in the late morning today; after fasting from 3am, Kip virtually ran across the entire hospital site to the theatre, then sat on my lap for the anaesthetic. Once firmly asleep, I escaped the building for a bit to enjoy the weather. Kip and I got back to the ward only a minute or so apart, and he immediately wanted ALL the Rice Krispies in the world. He snacked all afternoon on whatever I could find. Late afternoon saw the unwelcome return of a fever, and now that’s the headache.
Sarah took over from me just after tea time, and I look forward to a night in my own bed.
We don’t know when we’ll get home. Taking blood samples is now much more complicated as Kip doesn’t have any of the handy plumbing in him anymore, just a cannula in his right hand that’s good for giving but not drawing blood. We need to understand and get on top of this fever (which could easily be just a mild virus) before we can think about h***. We hope he’s not subjected to too much more antibiotics for the sake of his gut.
Well the days since T-Cell recovery have just shot by!
We had a theatre trip on Tuesday (not that kind of theatre) for a lumbar puncture and bone marrow aspiration to check for signs of leukaemia relapse, chimerism (if any of the donor cells are still there) and overall health of the bone marrow.
So here’s a summary:
After steroids, radiotherapy and chemotherapy, Kip had a stem cell (or bone marrow) transplant at the end of January. After three weeks with no sign of it working he was given a growth hormone to stimulate it, which had the desired effect and neutrophils (cells that fight infection) were found.
Surprisingly after testing it was found that the donor stem cells weren’t growing but that his own system had come back. Nobody expected this because it just doesn’t happen; no nurse of doctor at the hospital had ever seen this before.
Nonetheless, healthy cells kept growing, and there was no sign of any leukaemia anywhere (in remission). That has continued since then and, despite some setbacks and side effects, his immune system has recovered to the point he has the all-important T-Cells to fight off viruses. And what a time to be able to fight off a virus…
One side effect of the Covid pandemic has been a massive drop in other diseases like flu, chicken pox, measles and so on. That suits us quite well.
Kip still has his central line (wigglies) and port connected to his bloodstream for the way administration of medicines but they aren’t needed now. And, as they remain an infection risk, they are due to be taken out on Wednesday next week. The wigglies have been in for six months, and the port for a little over three years!
Kip’s overall health has taken some hefty knocks and he’s quite underweight after a bout of gastroenteritis, but right now he’s running round the garden with Millie being a happy and apparently healthy little boy.
We’ve seen no sign of the leukaemia coming back and, while there’s a real risk of relapse (more so than if the transplant had worked) every week that passes with no sign of cancer cells is a step away from that terrifying eventuality.
The team at Birmingham Children’s Hospital are happy enough with his progress that clinic visits and blood tests will now be just once a month. In February, we can look at getting vaccinations done and, dare I say it, have a normal life!
Sarah starts back at work on Tuesday, while I’m taking a career break to homeschool the kids (and be a kept man!), with some support from my folks for the first few weeks.
I don’t think we’ll ever think that the danger has passed or stop being vigilant, but certainly this is moving us into a different chapter. We can start looking ahead to a year without cancer, two years, five years, maybe a lifetime..?
Many miles travelled, many more to go. What a journey!
125 days after the Long Stay began (and with various trips in and out between), here’s Kip walking out of the hospital.
What’s different about this time is the magic 0.4; Kip’s T-Cells are above 0.3 and staying there, after successfully weeding out the Epstein-Barr virus. Clinically, formally, joyfully, Kip is now “recovered”.
His weight started to come up again, 150g higher than yesterday but it’s a fair way back to his ideal weight (I do not recommend stem cell transplant as a weight loss programme). He seems o be tolerating the feed quite well and, since the virus is in check and he’s producing antibodies to it there was no need for us to remain in hospital.
Some of his medications have been stopped as well, sadly including the only one that he actually liked the taste of, and what he has to take now will gradually taper down to a single medicine. He’ll be taking twice-daily doses of penicillin forever, but that will be it about five months from now.
We’re back in clinic on Tuesday, but Kip gets to spend the rest of the weekend playing in the garden with Millie and Grandpa.
I promised to keep this daily blog going until we got to T-Cell recovery, so now I’m going to take a few days off and will do updates on clinic and theatre days.
We’re looking ahead to the removal of Kip’s port and central line, further bone marrow and spinal fluid checks, and hopefully some sort of real life by the end of summer.
The highlight of the day was letting Kip have a session unattached from the machines; he grabbed the umbrella and pretended to be a jellyfish (a Lion’s Mane Jellyfish in particular).
Kip’s weight has dropped again to below 16kg. This is not what we were expecting, but apparently it’s normal after the parenteral nutrition has been stopped.
The big deal now is getting him to eat enough actual food so we’re not reliant on the bottles of feed going up his nose.
Top Trumps and discussions about bowhead whales (theirs heads are the size of school buses) and colossal squid (which get eaten by sperm whales) and giant siphonophores filled a good portion of the day, so I was quite happy to get out for half an hour!
There are no medical interventions going on, we’re just waiting for Kip to tolerate the feed so we can start heading h***, but the weight loss feels like a backward and complicating step.
Hopefully some news of progress at medical review tomorrow.
The day began with serious sad news; we woke to learn that my paternal grandmother died in the early hours. Millie and Kip loved charging around their great-Granny’s house in Leicestershire and we’ll miss her warmth, generosity and hospitality very deeply.
Sarah and I swapped over around lunchtime after briefly meeting our co-transplantee friend Isobel and her dad Kev for a quick catch up in the foyer. They’re further down the treatment road and a great encouragement for us all.
Some positive news as Kip’s weight had been up, so the team decided (without us, it has to be said) to take him off the intravenous nutrition and rely on what he ate and what went up the nose tube.
This meant Kip got to have some time unattached from pumps and machinery and so I enjoyed watching him run around the room like a squirrel on speed!
He had an early visit from the teacher because she had another kid booked in for the usual 2pm slot – but because that kid had fallen asleep, Kip got to have a bonus session of games and colouring and numbers which he absolutely loved.
With all the action, he got tired out quite early, and I spent some time playing Countdown on the tablet. Yes, I could have been productive, tidied up organised things but stuff it, we’d had a hell of a day.
Kip had somehow been given the wrong feed overnight, and so through the day he had some me stomach cramps, nausea and then a big spew that took out his NG tube again.
Other than that, he was able to have four hours disconnected from all the pumps. The intravenous feed has been doing its job and helping him to put on some weight, and he’s starting to tolerate bigger amounts of feed through the nose tube. This is all good progress toward going h***.
The day was a bit of a landmark for us as well; it marked four years since Kip’s admission to hospital, when he got his first central line and began steroids and chemotherapy. While it’s Day 122 of this particular treatment, it’s been a full 1,461 days. Some highs, some real lows along the way but most importantly he’s still here.
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.