Stem Cell Transplant – Day 97

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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!


*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…

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