Stem Cell Transplant – Day 113

We did this CT scan – rock’n’roll.

Well…

If the side effects of leukaemia were a person, it would be H from Line Of Duty.

It started off very nicely, went a bit downhill, then was pretty good, then a little unnerving, then quite bloody hell and stayed there until midnight.

The great start was thanks (again) to those fab people at Billie’s Fund (please visit their website here and their follow their Twitter here) who send some brilliant Lego sets for the kids’ respective and adjacent birthdays. Both Millie and Kip come alive as they build and play together; our heartfelt thanks for these gifts.

Lego – how to start a running race in French.

Millie went to her homeschool group mid-morning with Sarah and I stayed home with Kip. We learned about some fish evolution, a bit of sums and some snacks. Kip the started complaining of tiredness and snuggled down a bit in anticipation of our afternoon appointment.

Once at the hospital, Kip started to feel gradually worse and worse with abdominal pain, so I stopped his feed and shortly after there was a loud noise from right in the middle of him, and a hurried trip to the loo where we had the least comfortable but experiential and aromatic hug ever.

After five minutes of intestinal tuba impersonations, he felt a lot relieved – Sarah and I are wondering if he needs a break from the Peptamen feed – and we settled in for a game of chess on the tablet for ten minutes, then it was time to head downstairs for his planned CT scan.

I remember his first scan in 2017, when he was desperately unwell and quite terrified of the machine but too weak to wriggle out of it. Now with some briefing he’s quite calm and he knows when to hold his breath and when he can relax. I mean, it’s still not exactly fun for him, but it can be endured.

We then returned to outpatients clinic and waited on blood results and review with the medic. His neutrophils turned out to be a bit high, which suggests there might be some kind of bug, but it’s something to keep an eye on so we agreed to go back in on Tuesday as usual. And shortly after, we headed home.

A quick fifteen minute scan appointment filled the afternoon from 1pm to 6pm.

Once home, we got a bit of dinner, and Kip wanted to go to bed, not unusually. We looked forward to a quiet evening at home, we might even get to finish watching Sewing Bee…

Until Kip cried and complained of feeling sick. Five minutes with the sick bowl, hugs and reassurance and then… he felt a bit hot.

38.8°C

Crap.

Bags packed, everybody in the car, Millie dropped off with Wendy and Mike while Sarah and I get Kip into the Emergency Department.

Sarah stays in (we know this will be a two day admission for broad spectrum antibiotics, further knackering Kip’s putative digestive system), I go and collect Millie and leave the house in an absolute state until the morning.

By this time, of course, Kip’s temperature comes down, stays down all night… but the antibiotics continue as per protocol. We really can’t wait for those damned T-cells to recover and the central lines to come out, so that temperatures can be dealt with at home by the application of Calpol like normal humans do.

One day…

#TeamKip

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