Changeover Day arrives and, after hugs at the front door saying goodbye to Millie, I drive to the hospital, have hugs in the foer with Sarah and head upstairs to the ward and have hugs and snuggles with Kip.
We are firmly in the engraftment stage and small steady improvements over the last few days have resulted in some pretty major milestones:
– Today for the first time Kip was able to disconnect from the medication drivers and external nutrition to run around in his hospital room.
– He doesn’t need the Ketamine-U-like plugged into him anymore and he’s moved on to oral painkillers (“the red medicine”)
– He’s got WAY more energy and is laughing and cheerful.
For tomorrow I’m looking forward to being able to play some more games, build a bit of Lego and hopefully get some more good news on the blood counts.
Today was another good day with more progress on the neutrophil count, all the way up to 1.2, so we’re able to start lowering the dose of the Granulocyte Culture Stimulation Factor (GCSF and I’m only typing it out to show off that I know what it is!) and let this new bone marrow do it’s thing without having the pharmacological equivalent of the overbearing parent bullying it to work harder…
We’re about to do another Great Changeover Day tomorrow (Wednesday evening) but today got us a brief little treat; Kip had a play therapist in the early afternoon, meaning Sarah could escape the building for half an hour so we *sat in the car together* for the longest period of time together in five weeks! We had a conversation and everything, no interruptions. It was weird that we even remembered how to do such a thing…
My day was spent at home with Millie who is really missing her little brother. She’s excited that the new stem cells seem to be working, and really looking forward to showing Kip the den she has built for them in their bedroom.
I know it’s an old picture, but I wanted to share the little snap above because it was about this time four years ago that we started noticing little lumps around Kip’s neck that were the very first signs of something being wrong. He was full of smiles and energy and showed no signs of being ill.
It’s sometimes hard to look back to then and think if we had know what we now know would we have got him treated any quicker, would it have made the outcome any different… Of course it wouldn’t, we had some blood tests when we first got concerned that were completely normal; it took a bit of time for the leukaemia to show itself.
But this photo does hark back to what seems like a different life; back when Sarah and I could spend half an hour together and not spend all that time talking about diarrhoea and antibiotics and blood transfusions, back when the biggest challenge we had was getting enough pictures of these cheeky smiles!
Yet more progress today, as Kip’s neutrophils rocket up into single figures! He’s gone from 0.4 yesterday to a full 1.0 today.
Sarah is in the hospital with him and is bearing the full force of a little boy who is feeling a bit more energetic and wanting to play; I think I’ve dodged a bullet there!
Other good news is that his twice-daily weight measurement and kidney function tests are being reduced to daily, which means they’re less worried about his fluid balance and function.
The poor boy is still a bit bunged up, and had to have a new sticky plaster covering his NG tube as the previous one was coming undone – it’s not pleasant to watch your little boy cough and the tube wibble-wobble about. One thing that Kip really hates is having a plaster taken off, so kudos to him for putting up with this. And for putting up with all the other stuff, for that matter.
We’re five weeks in, this might even be halfway. Even so, there will be a long recovery ahead and Sarah and I are facing a bit of uncertainty about what we’re going to do with ourselves. Can we go back to work (in healthcare, and risk infections coming in)? Or do we try and jump on the social media influencer bandwagon and release daily videos about our avocado salads on Instagram? Hmm…
Kip has a nasogastric (NG) tube, a thin, flexible pipe that has a screw-fit connector on one end, is taped to his face and goes up his nose, down the back of his throat and directly into his stomach.
The NG tube is used to get nutrition and medicine into him without the bother of eating or swallowing. Sarah and I are both trained in testing and using the tube.
It looks as uncomfortable as it sounds, and doubtless feels worse. For the most part Kip doesn’t notice unless someone tries to inject something a bit cold or they pass it through quickly; in this latter case the motion of the liquid flowing fast through the tube makes it move about in the back of his throat and I gag a bit just typing that…
The trick is to pass room-temperature fluids through it very slowly. That’s easy when we’re just giving the nutritional milkshakes (see previous post), which trickles anonymously through at approximately one millilitre every two minutes.
The photo above shows Kip’s cornucopia of medicines which arrive at 6pm. If I put the through at the rate of one millimetre every to minutes, I’d still be doing yesterday’s doses right now!
We can either give them when he’s asleep or, and this is more likely, distract him with a binge session of Octonauts on iPlayer. Gently, gently, slowly and gently we put the medication down the tube, avoiding tugging or twisting or rattling or tapping it as we do, because each of those generates a scream of protest from the poor boy.
We are getting quite good at it now!
More encouraging news about Kip’s stem cells, as his neutrophil level is up to 0.4 from 0.1 yesterday. This has manifested in a slightly more animated, chatty and cuddly boy who I think actually had some fun today.
Fevers are a bit less, his sinuses seem a bit clearer so all in all this counts as one of The Good Days.
Kip hada pretty active morning, awake at seven and demanding to have his bath immediately – how could one say no to that?
After that the poor boy got crankier and crankier until, lightbulb moment, we started using his pain relief a bit more liberally. From there the day was just excellent. He had a nice restorative nap, then a whole hour on a video call with Granny and Grandpa, playing with his favourite colour of balloon and reading a few stories.
His fevers stopped through the bulk of the day, returning in the evening so we had over twelve hours where he didn’t have a high temperature. It came back later, along with nausea and sickness, and we are braced for this being an up and down chaos over the next few days, even weeks.
We’re also trying to get his fluid intake sorted; too much and he gets puffy and unwell, but too little and he also gets unwell. There’s a balancing act to master that we are !ere apprentices at present.
Blood counts still encouraging though so while there are daily challenges that make life unpleasant for him and us, there is a lot of hope. Things could be going much, much worse…
This odd looking wibbly sphere with its three strawberries and popping candy in the middle is a neutrophil. The point of a neutrophil is to fly around your bloodstream attacking nasties who don’t belong there.
The normal amount of neutrophils for a child of Kip’s age is between 1.5-7.5×10³/µL, which we would usually simplify by referring to the numbers at the front (avoiding the maths and symbols after).
These little cells are at the heart of Kip’s leukaemia; he wasn’t making them properly and didn’t have enough healthy ones. Since he had the radiotherapy and intensive chemotherapy about a month ago, he hasn’t had any neutrophils at all.
This is why he has been so vulnerable to infection, why we remain isolated and have to adhere to strict rules on hygiene in the hospital.
He got the donated stem cells a little over three weeks ago and last Tuesday you may recall he had a little boost of medication called GCSF to try and persuade the new stem cells to start producing neutrophils.
Today was the crunch; if there had been no sign of neutrophils by today then it might have meant the transplant had failed.
So it was very good news to hear this morning that his neutrophil count, having been a stubborn ZERO for weeks, had now reached the lofty peaks of 0.1!
In short, it looks like his new bone marrow might be working.
It’s still very early days, but when good news is in such short supply, we’ll celebrate where we can!
Some real progress today as Kip gets settled with more effective pain management. Plus, Sarah took in mini packets of Haribo, so he’s made up.
We are hoping more than expecting to have some neutrophils appear in his blood count tomorrow or Saturday, we really need some good news. They might be there already, but not in sufficient number to show up in the automated blood counts.
Today we’re saying a big thank-you to Billie’s Fund who, after following this blog offered to send something to Millie and Kip. We were thrilled when some big boxes of Lego arrived for them both!
There is a real sense of community and camaraderie amongst families affected by cancer. That sense of a shared experience is a tremendous support in tough times; there’s always someone who’s been through it to offer some hope and understanding.
Wednesday was a better day in many ways after a bit of an unpleasant night. We finally got some pain management sorted which appears to be working.
In this post I wanted to give a shout to an awesome charity called Supershoes. They customise a pair of Converse trainers for children with cancer, you just tell them what your kid is into and their artists hand paint it on.
We received Kip’s ones today, featuring R2D2, Wall-E, the Octonauts and #SmellyPantsWee on each side.
It’s a wonderful gift, completely unique and a brilliant idea. Once Kip is a bit more mobile I know he’s going to love wearing them!
We had a changeover again; as Kip has been less well and sleeping through the day, we had fewer visits from the play therapists and other professionals; in turn that means not having an opportunity to get off the ward even for ten minutes, which really affects how long we can stay in without it getting to us.
Hopefully now with better pain management that will start to change as Kip really benefits from the sessions, as do Sarah and I!
Still no sign of action from the bone marrow, but we’ll know more at the weekend.
Today is three weeks since the stem cells were transplanted into Kip’s bloodstream. We (and the team here) had been expecting to see white cells showing up in his bloodstream a week ago, but still nothing today. So, today he was administered a dose of Granulocyte Culture Stimulating Factor (GCSF – and good grief does that need a catchier name) which, over the next two or three days, should stimulate any stem cells in his bone marrow to start doing what bone marrow is meant to do and start producing white blood cells.
Until these cells start working, Kip remains without an immune system and so he’s been vulnerable to, well, virtually everything. The fevers have continued today, though much improved from yesterday, and the lack of functioning bone marrow meant he needed platelets today as well.
Effectively managing pain is a bit of an issue as well; the bubbly and active boy we all know has been lethargic, irritable and upset for a couple of days. Hopefully in the morning we can manage to get him hooked up to the horse tranquilisers again!
Despite the downsides, he is at least still going and still determined. We get to read together and watch Tom & Jerry. Occasionally we get a smile. Hoping for progress by the weekend.
Also, and this is unrelated, the UK Government are corrupt imbeciles. That is all.
A picture from happier times, three years ago when Kip had his first central line removed. He’d had quite a day in the hospital with a suspected line infection that meant it had to come out but, because of the infection he had to go last on the list; he was fasting from 3am to 7pm and the wonderful surgical team stayed late to make sure he was seen.
Today there are still questions of line infection, as the rhinovirus explanation we so confidently shared the other day turns out to be just one of those things and doesn’t properly explain his symptoms. A new bug was found in some samples, and it’s not certain if it came from him or was a contaminant introduced in the testing. Since growing the culture takes 48 hours, it’s an incredibly frustrating delay.
All that and still no sign of those donated stem cells working.
So tomorrow he will have a medicine called G-CSF, which is a protein designed to give the embryonic immune system a bit of a nudge towards being productive. Hopefully we’ll then find out by the end of the week if this whole process has actually worked or not. The former is likely, the latter doesn’t really bear thinking about.
The worst part of today is that Kip has been quite poorly, lethargic and very congested, so he’s tired and fed up and not at all his joyful loving self. That’s the hardest bit to watch.