Stem Cell Transplant – Day 103

Second clinic visit of the week to catch up on an anomalous lab results, the weight issue, and an update on the T-Cells.

Tuesdays dodgy liver results turned out to be an error of some sort, so no further action required there.

His weight has at least stopped going down; now we need him to stay putting on weight again. Here looks really thin and is getting tired very quickly.

The T-Cell report was not the good news we were hoping for, but it’s not particularly bad news; the number has dropped very slightly. Apparently these things happen… one of those “two steps forward and three steps back” things which I am choosing to frame as his cells trying to style this out by doing an interpretive dance.

The vomit problem is still a daily threat and, just after he got home from clinic, he puked out his NG tube again. The community nurse came not long after and we negotiated a replacement up his nose and into his stomach. This bit never gets easier for him, you can’t just stop the choking reflex. One day that tube will come out and he’ll never need another.

One day…

#TeamKip

Stem Cell Transplant – Day 102

Sick beats.

Day 102 can get itself firmly into Room 101; noxious fluids from several directions venting out of the poor wee man.

He started the day quite well though he was clearly very tired. His appetite has come back a fair bit, and he was demanding smoked salmon and chicken nuggets (which is difficult because we don’t have any). Then after a wee while he complained he was tired and basically spent the rest of the day on the sofa with a brief Mr Creosote impersonation shortly after lunch.

A good long sleep followed, then after a brief trip to the garden, a game of chess with Millie, a couple of episodes of the Twirlywoos and then off to bed.

Tomorrow is clinic day and we’re anxiously awaiting the results of the T-cell count. If crossing fingers made any difference we’d be doing it. Instead, we’ll plug on with the fluids and milkshakes to keep trying to get his weight up.

#TeamKip

Stem Cell Transplant – Day 101

A really difficult night last night, the first time Kip had been sick in ages just topping off our stress about his weight.

He was really tired and lethargic all morning, but we had him hooked up to the dreaded energy shakes. A difficult choice as he wasn’t particularly well while taking it previously, but he’s so thin that we just had to risk a bit of discomfort in the name of calories.

Eventually he got some energy though, and we ventured out for a trip to the park. Ten minutes of running about and he was ready to head home.

The rest of the day past completely without incident, and Kip even managed some dinner, had his medication without incident.

I got a phonecall in the late afternoon from a total stranger asking questions about salmonella – I’d forgotten that it’s a reportable disease and some details were required for Public Health England.

Hoping for a bit more energy tomorrow for some playtime in the garden!

#TeamKip

Stem Cell Transplant – Day 100!

A whole morning in clinic, Kip, myself and the ever-resent Rabbit sporting her superhero outfit.

We walk into outpatients, have a chat with the staff and, after using the correct password, are handed a delightful gift of books from our lovely friends Isobel, Myles, Sue and Kev. Entertainment for the day well and truly sorted!

Kip spent a few minutes choosing which room we’d spend the next few hours in (eventually room 8, which had a reclining chair with *footstool* for me and is therefore my new favourite).

Once up on the bed, Kip had some bloods taken for testing before review from the medics. With a little persuasion he gave up a bit of blood from his central line. One of the team then brings Kip a bowl of Coco Pops which he slowly eats over the next three hours.

The blood test gives some immediate results on haemoglobin (for carrying oxygen around the body), platelets (for clotting), white cells and neutrophils (for fighting diseases) are in his blood.

A short while later they can tell us how his liver and kidneys are functioning.

And in a day or two they can tell us if he is in T-cell recovery.

Today’s results were mostly good; completely normal, as healthy as it’s possible to be. One slightly anomolous score on his liver is something to keep an eye on, and that’s one of the reasons we’ll be back in clinic on Friday.

The other reason is for review after his horrible bout of gastroenteritis. Kip has lost two kilograms of bodyweight which, given his age and size, is a fairly substantial proportion of him, like 10%. Obviously we are not thrilled by this.

As an extreme weight loss plan, a bacterial infection might well be up there with surgery, but it’s an issue we have to address without making Kip’s life bloody miserable. Getting enough fluid into him has been challenging enough, but now we’ll basically have to start pushing food at him the whole time. We weren’t keen on going back to using the high-calorie shakes because he was suffering a bit with them (and being sick quite often), but unless he starts eating lumps of butter there’s no quick way to get him back to a healthy weight.

Once we got home, he spent time playing (and then arguing) with Millie, helped out with dinner, swung on the swing and watched a bit of telly before finally landing his head on his pillow.

This is the 100th day of his stem cell transplant journey, but in reality this is Day 1,438. Another day of uncertainty, procedure, difficult conversations and handling medicines. While I’d happily rewrite history in a heartbeat so that he never got sick, we are deeply thankful that our NHS, the charities, the donors, the supporters, the runners, our families, our friends, the doctors and nurses and allied health professionals, even the Department for Work and Pensions have been there to support.

And of course, so deeply thankfully for Millie and for Kip. Every day of this journey has been worth enduring to have our children together.

#TeamKip

Stem Cell Transplant – Day 99

There’s no one quite like Grandma.

A big and emotional start to the day as we said goodbye to Sarah’s folks.

They’ve been here since the day after Kip’s initial admission for stem cell transplant, so 14 weeks all in.

We’re going to miss them, the kids especially. Grandma was always there for games and Grandad has built settings and climbing frames and monkey bars in the garden that bring the kids such joy.

To make up for the big change, we kept the kids as busy as possible all day, Kip in the garden and Millie up in the hills with her homeschool group.

Sarah and I also had a consultation with one of the community teams over Zoom, which was a good opportunity to ask questions and have a little vent about three uncertainty we’re all in.

Clinic tomorrow for more tests and, eventually we hope, the potential for answers.

#TeamKip

Stem Cell Transplant – Day 98

Singe when you’re winning.

It’s not all leukaemia and relapses and fevers and salmonella and ESBL and gut inflammation and invasive procedures and viruses in our house, oh no.

Because Kip is a little boy who likes to explore his world and literally play with fire…

Which is fine apart from the four and a half seconds I was doing something else that it took for Kip to take a little twig out of the firepit in the garden, blow out the miniscule flame at the tip and press the glowing end onto the top of his head.

“I thought it would be warm” he said once he’d stopped screaming. Ice pack applied, damage minimised but he had burned away a memorable crescent of hair, scorching the skin in what will be his most vividly remembered memory of the day.

Millie and Kip have been a bit on edge for the last couple of days; their Grandma and Grandad (Sarah’s parents) have been staying with us since the end of January and are heading home tomorrow. It will be a big change in the dynamic of the household and the kids know things are going to be weird while we adjust.

It’s been great to have them here, to support in looking after Millie while Kip was in hospital and we had to do changeovers, helping round the house, playing boardgames and seeing to the shopping.

On the other hand I can start swearing round the house again 😉

#TeamKip

Stem Cell Transplant – Day 97

Image source: https://nci-media.cancer.gov/pdq/media/images/756805.jpg

It’s three years ago since Kip has his port fitted; the little thing under the skin that means you can take out the central line but still be able to punt in IV fluids easier than sticking a needle in his hand.

It’s not been without its glitches – for instance if he’s sitting or lying in slightly the wrong position, it just doesn’t work – but the advantages compared to the central line are amazing.

For a start, it means that he was able to go swimming (especially when we had our first trip to CentreParcs, which is all about the pool time!), have baths without stressing, play with other kids without worrying some tubes would get snagged in a tree…

When we started all the treatment for stem cell transplant, the initial plan was to get a 3-way central line put in but, because he had a functioning port, and because he’s only little, the decision was made to keep the port and only insert a 2-gang central line. Despite a little bit of drama a couple of emergency admissions ago* it’s worked out very well.

Now we’re almost 100 days into the treatment** and aiming towards T-cell recovery, we have to start thinking about what we do with all these bits of plastic gubbins we’ve been using to get the medicines into Kip.

The central line (actually a double-lumen Hickman line) will likely go soon after recovery and that won’t be missed. The lines flap about and have to be kept in a little bag, they can’t get wet, they can’t get dirty – did I mention Kip is a four year old boy? – and there’s a huge dressing on the top of them I have to replace at least once a week in a procedure that takes about 30 minutes.

The port on the other hand has been something of a constant companion, complete with its idiosyncrasies and foibles that it will be in some ways difficult to see it go. We don’t want to have to stick needles into Kip (we’re a bit soft like that) so there will be trepidation.

And of course we have to get to T-cell recovery first!

#TeamKip

*Nobody could get the port to work and there was a worry it would have to come out as an emergency, but Sarah and I insisted on paging one of the outpatients nurses who is an absolute ninja on the matter (Thanks Tom!) Problem solved, we carried on our semi-merry way.

**Although this blog post says Day 97, I started counting from the day we went in to hospital; we don’t get to 100 days post-transplant until Day 108, slightly confusingly. Anyway, 100 days post-transplant is something of a milestone for all kids who receive stem cells, as it’s when most on average have reached T-cell recovery. I’ll write more on the subject when I understand it a bit better…

Stem Cell Transplant – Day 96

More than a peeling.

How awesome to have a full day at home!

We spent the full time figuring out how to manage his fluids in a way that meant he could still run around the garden and play with Millie.

Good news is that his appetite has come back, though he’s still a bit under his normal weight. He’s been asking for food for the first time in ages, but he’s asking for very specific things like spaghetti or fish and chips NOW.

We did, in the end, have fish and chips yesterday, and Kip was really helpful getting the tatties peeled, supervising the frying and letting everyone know it was cooked.

Other good news there’s been no sick since we left the hospital, and the horrific pesto-poo is gradually being replaced by something more healthy looking (honestly I’m turning into Gillian McKeith…).

All good progress for the weekend.

#TeamKip

Stem Cell Transplant – Day 95

Guess Who’s home…

We spent all day thinking about h*** – and then we got there!

First thing in the morning Kip woke up and asked for a shower. This has never happened before, and it was because the nighttime nappy was completely full…

563 grams of wee overnight, so I’d like to extend my admiration to Naty for making a brilliant product that isn’t horrible to the environment.

We had some games and jigsaws in the morning before Sarah came in for the planned Changeover Day and I went home to make pizza.

The news from microbiology was that whatever bug he had wasn’t growing in the labs, so it was impossible to get a specifically targeted antibiotic. However, Kip’s been doing so well (plenty fluid, plenty energy, no temperatures) that he was well enough to get home.

Sarah started packing, and I hopped on a scooter to drop off some big bags for all the stuff we had accumulated.

Then, a little after 7pm, we all got in the car and went home. I tucked Kip into his bed and we both fell asleep straight away.

#TeamKip