Cycle 2, Day minus 2

Today we got our very detailed, very specific medical education from our liaison nurse. She was off sick last week, but it is great that we have now met her. She is basically Joshua's 'case manager' and so is the one with the big picture and our primary port of call for questions.

So in short, Joshua is planned for 5 rounds of chemo. The first 'mild' one took place last week. The second round starts properly on Wednesday. However, today was spent pumping him full of the 'accompanying' drug to ensure he didn't react badly to it. The good news is that he didn't. Tomorrow will be various tests (ultrasound/x-ray/bloods) which should hopefully be a fairly relaxed and short day before we go in for the real stuff.

Each of the remaining four rounds is a 21-day cycle, with 5-7 days of chemo as an inpatient and then the remainder of each cycle being 'recovery time' while his body (and particularly his blood) recovers from the chemo. Each round will pretty much wipe out his immune system, so we have been told to expect that he will need to be admitted to deal with any infections arising in the 'off periods'.

So a major prayer point (other than his body and mind coping well with the chemo itself) is that we would be able to keep him free of infection as much as possible during this time. We have four fridge magnets with all the warning signs we have to look out for, so we are well primed. In the event of any of the signs, we either call an ambulance or go to ED/ER/A&E and get the fast-tracked gold service 👦 Hopefully we won't need to take advantage of that too often! We have also got a box stocked with all the meds, counter-meds and just-in-case meds for the coming period. I have downloaded an app...


Thanks to all those who are praying and have supported us practically. I am still trying to process and work out everything, but will (time/space/energy/headspace permitting) be in touch with people in due course.

The other thing to pray for, while I think about it, is that despite my best efforts Joshua has picked up 'the cold' (as has Libby) which is making him feel more miserable than is entirely necessary. It would be really nice if this could clear up really quickly so he has all the resources necessary to keep on the path. (The upside of the cold though, was that he had to be isolated for today's treatment, which meant we got a nice room all to ourselves 👦)


There is lots more I would like to write, but we have to be back at the hospital at 8:00 tomorrow, so I should probably make tracks. I will write more when a quieter time comes (ha!) At least now, thanks to generous former-strangers, we now have our own wheels, so we can be a bit more independent with getting to the hospital.