T-4: Quiet Day

Apart from the cloud of potential bladder and kidney problems that hangs over us, today has been a ‘good’ day. That is, Kay had the 4th ATG treatment and it passed uneventfully. The exponents just keep on working. Late last night and early this morning she had a lot of tummy pain and diarrhoea (another spell checked word!). This is another run-of-the-mill side effect of her treatment and we should in theory treat it as such. But it’s pretty difficult to see it like that when your child is rolling around in bed in pain. But still...

In herself Kay has also had a good day, less angry and difficult with Marion and I. She has even been fairly cheerful most of the day, I gather. This evening she was briefly decoupled from the monitor and various lines and allowed a shower. She spent about 30 mins just letting the hot water run over her body, lapping up the feeling. She has eaten reasonably such that the threat of being put on NG feeding has possibly receded. She has lost about 0.5kg in the last couple of days but it still way above her low point during the initial treatment.

A kidney function test this morning has not shown any damage to her kidneys. However the radiotherapy will increase the risk of damage to her bladder so, judging from what we have heard from the specialist, we can probably expect bleeds from her bladder during the next weeks. Hopefully this will only be a temporary effect. And hopefully her kidneys will show no deterioration in the next week.

I had a bad night last night and was still pretty angry and upset this morning. So I got on my bike and cycled 93km around the Nijmegen area. It was a beautiful day and there is some beautiful countryside around here. So in the course of the ride I managed to push some of my anger and despondency to one side. On the 11th of May I have a meeting with the wise minds of the hospital and complaints commission about the problems that arose with Kay’s treatment through to January. I’m surely to add this to the top three items on the list. I just hope that the list doesn’t get any longer.

Tomorrow Kay gets the final ATG and an echo in preparation for the radiotherapy on Tuesday. Wednesday is a rest day and Thursday is when the transplant is due to take place. We’re still learning about the hygiene rules – this being Nijmegen they don’t have any documentation available and the explanations that we’re given are incomplete, etc, etc – and slowly we’re learning about what can and cannot be taken into Kay’s room, etc. Surprisingly the rules seemed quite relaxed to begin with. But each nurse gives us additional rules and so, bit by bit, the restrictions are starting to meet my expectations.