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.