Tuesday 13th October 2020 was Kip’s last clinic visit for a routine End-Of-Treatment lumbar puncture and bone marrow aspiration to formally mark the conclusion of three and a half years of being in and out of hospital.
Kip had the anaesthetic while laughing and saying “farty bum-bum wee”, keeping all the staff entertained as usual. The procedure went perfectly and, as we left clinic, the staff lined the corridor and applauded him as, finally, he rang the bell and got his certificate. I was so proud and there was a lot of joy in the room.
On Tuesday evening, Sarah got a call from our consultant. The lumbar puncture had shown leukaemia cells in Kip’s spinal fluid. Sadly, it’s not over yet.
On Monday (19th October), Kip will start a new round of steroids for between 5-8 weeks, have weekly lumbar punctures with intrathecal methotrexate (sing that to the tune of Bob the Builder), hydrocortisone and cytarabine, plus weekly infusions of vincristine.
Once all the leukaemia cells are gone from his cerebrospinal fluid (CSF), he will get a bone marrow transplant, and that’s going to involve a very long admission of at least two months. This will probably be the hardest time of all, as he won’t be able to have any visitors and won’t be able to see Millie or more than one parent at a time.
We’ll keep everyone updated quite regularly on his progress. Thanks for your messages and friendly support over the years of treatment, it’s been an absolute lifeline for us all.
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.
So it’s a bit different to lump a few days together but there’s so little that happened since Monday.
Kip is still at home and – this is quite cool – had a splashy bathtime with his sister. It’s amazing how tiny bits of nonsense like this that give us joy. He had a trip to the pool, but could only watch as he’s not quite healthy enough to get dipped in communal waters.
We’ve booked a holiday. And booked a second one as well, the first in March and then in August. It’s been interesting booking a trip based on price AND proximity to a major hospital instead of just the cheapest option…
Monday will technically be Kip’s last day of Delayed Intensification, then Tuesday is an off-week to let his blood counts recover before the maintenance phase begins.
The wee chunk is still having a bit of nausea and retching but nothing like it was a couple of weeks ago. The obsession with smoked salmon continues, and I had my first proper conversation with him (about cream cheese).
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.
So this was the morning that the tough decision was made for us – Kip’s central line is sustaining an infection, so it has to come out. That means he’s on the emergency list for Sunday and the vancomycin antibiotics were started in the afternoon. As I understand it, vancomycin is to antibiotics as Mr Muscle is to household cleaning. The boy’s insides will be clean.
While under anaesthetic, he gets the line removed and a cannula put in his arm – this is a temporary way of getting the antibiotics into him for a few days. That will take us to Tuesday, when he gets his last dose of vincristine (chemotherapy) before maintenance.
The good part is that, barring serious infection, Kip won’t need any intravenous medication throughout the maintenance block. Once the central line wound heals over, he can go swimming and have a normal bath again, and the biggest infection hazard is removed.
The bad part is another operation, but he was going to have that anyway.
Apart from a few bits of being sick, Kip has continued on pretty unbothered by it all.
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?
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.
All day Wednesday spent in isolation, let me introduce you to our cell mates.
This is Coronavirus:
This round little thing lives in Kip’s nose right now. There are various kinds, from the one that you have every time you have a cold, to SARS. Kip’s ones are more toward the cold-end of the spectrum. It looks like a cartoon of a virus. We treat it like a drunk relative; just wait for it to finish ruining everything and wander off, which it eventually will. Then we can all look at each other instead of the floor and go “wow, what an asshole”.
This nasty little shit* is Enterococcus faecalis:
It lives in poo and intestines, being horrible. Some of it was found in one of the lumens of Kip’s central line. This anal-dwelling lozenge of misery is the reason Kip gets Tazocin as an antibiotic; Tazocin kills E.Faecalis dead. It does so before E.Faecalis can cause sepsis. It is the reason we rush in to hospital when Kip’s temperature goes above 38C. We rush in and a blood sample is taken to see if this bacteria grows in culture. Most of the time we get nothing but this time they found it.
It’s too complex to begin to understand how he caught this bug, there are too many variables. But we do know we’ve found it, and now we’re going to kill it.