Ok, so basically, they are starting tomorrow because they are so pleased at his progress so far and how fast he has recovered from his operation, so I guess that that is a good thing.
I was able to sit through all the talk of side effects etc. quite calmly and only started crying, embarrassingly, when they said that they would like to start tomorrow. I guess, again, it leaves me less time to dwell on all the terror, but I feel so sick. I feel like I was relying on this week to get myself together, to do the washing, to have family time, and I feel like it has been stolen from me. When of course, it was never mine in the first place, so I appreciate that it's silly of me.
So, Joe's treatment is in tomorrow afternoon for pre-meds. This means that (snow permitting - am extremely pissed off with the forecast!) I should be able to get to my appointment in the morning. It's a routine eye problem that I have but not sure whether I will be able to drive in the afternoon because of the eye drops I have to have, and DM will not drive in snow. Obviously(!) I am not allowed to know what time we are expected at the hospital until tomorrow morning because that would be too helpful. The way I'm feeling at the moment, I'm tempted to tell them to go screw themselves if it is anything earlier than 6pm, and basically explain that if they wanted us in early, they should have damn well given us more than a day's notice. That's in my head, anyway, I'm sure I wouldn't be anywhere near that rude to them in real life. It's not their fault.
He will have 6 days of chemo starting on Wednesday and then he'll have a day off and then have his stem cell transplant. After that, visitors are limited to his direct carers, and we can't even take DD in to see him. I was expecting this, but feel the weight that tonight may be the last evening they spend together.
He will be in hospital, in total, for 4-12 weeks (potentially longer than we had been told before) but the average is 6 weeks. He will be sore all over, particularly in his mouth and digestive system. Most children find that their digestive system stops functioning so they have to be fed intravenously. However, a few children still manage to have their tube feeds. We aren't expecting Joe to be that lucky, but it's something to hope for.
It will completely obliterate his bone marrow, but the stem cell transplant should restore that, albeit slowly.
The most serious potential side effect is a severe infection, which could be life-threatening. There is no guarantee that we will be able to bring him home after this treatment and that is what scares me the most. Today could be the last time he is this happy and well and silly and 3-year-old. I am so so so scared.
All other side effects are likely to be temporary but include severe liver problems (veno-occlusive disease), injury to the kidneys, lung problems, seizures, finger and toe nails falling off and discoloured skin. He may get some or all of these things.
He should be reasonably well during the chemo and for 4-5 days afterwards and then will get extremely ill within 24 hours and then we just have to ride it out.
There is every chance that he will be absolutely fine at the end of it, most children are, but it is a hell of a journey to go through. He will need daily blood transfusions while he is in, and certainly platelet transfusions for a good time after he is discharged.