Hi @Castlereagh Thanks for checking in. I check these boards every so often to see if anyone else has posted on their own situation, but it's rare...I haven't updated, as I'm aware that all I do is complain about how bad things are...
No, I never did get any answers from the consultant or support from the hospital. We were at GOSH on Monday for a kidney test and were supposed to have a consultant meeting as well, but that was cancelled, as the consultant said she didn't have anything to say to us. Where does one start with that?! She did say we could still meet her if we wanted to, but I didn't see the point. I did want to ask questions (which I had told her in advance by email) but, as my son would have been in the meeting with us, I didn't feel it was appropriate. I wanted to ask how long he is likely to last before symptoms start getting worse, how long he'll have once they do start getting worse and what end of life pain relief would be provided. I can't ask any of that in front of him. I am at a loss as to what to do for the best. I don't want us to, yet again, be making life and death decisions 60 seconds before they start a procedure because they've failed to give us any information beforehand...but that's been their approach for nearly a year, so I can't see that changing, no matter how much I beg.
I want to ask my son what he would want to do if things get worse, but I can't ask him without having information to answer his likely questions, like what will second phase chemo be/how sick will it make him/will he have to have it in hospital etc. I also don't want to ruin any relief he may feel at chemo being over by suggesting he will get sick again. So right now, I just stay silent and hope that he doesn't relapse before our next consultant meeting at the end of the year.
In addition to the above, it has been a bad month. Since radiation, DS got a severe infection after every single round of chemo. I was really hoping he would make it through this last round without one, but he barely made it a week at home before being admitted to our local hospital with an infection. It's the same one he had last month (and I suspect every month since January) - a staph infection in his hickman line. The soonest GOSH can remove the line is October. The local hospital are reluctant to remove the line because they say it's the best way of treating him with antibiotics if he gets sick again...but if it's the line that keeps giving him the infection, surely that's just a self defeating approach? I've suggested that, to no avail. So he had a week in hospital, came home for two days before being readmitted with the same infection. After a week they discharged him again, with antibiotics to take at home which, so far, have kept things at bay. In between, he's obviously had to go back for the usual blood and platelet transfusions.
On the plus side, at least they agreed to stop giving him the G-CSF, as it was clear that any potential positive was being massively outweighed by the growing negatives. After a week of no G-CSF, his back pain has gone, but the bone pain in his legs (which he's had since last year) remains.
A big win was that he was able to go to school for the first day of Year 3 this week. He only stayed for the first two hours, and was completely exhausted by the end of that, but both he and I were really happy he went. I'm upset on his behalf that the school's approach to some things is having a negative impact on him, but I think they will improve with time.
It was sad for me to have to sit in a meeting with the school while they went through the risk assessment. They assumed that the issues I highlighted last year (balance, vision problems, memory and word finding issues etc) were "fixed" and DS was back to normal. It was very hard to say that no, those issues haven't gone away and that, for those who remember him before he got ill, he is not the same child, and they need to think of him as someone new they need to get to know. One benefit of the meeting was that I can see they are trying their best to help.
I find it astonishing how clueless schools are in terms of practical arrangements. I guess children having serious illnesses is still quite rare, so they're not trained in how to best help the child learn while they're too sick to attend and how to reintegrate them once they get a bit better. Just simple things like a safe place for me to put DS's wheelchair send them into a panic. When I asked the TA where I could leave DS's wheelchair while he was in class (which is now upstairs), she looked at it dubiously and said she didn't think she'd be able to carry something that heavy up and down the stairs every time he needed to go from the classroom to the lunch room/playground etc. I think she'd been told that she would have to do that, which I certainly would not expect or want her or any other teacher to do. It IS far to heavy to regularly be carrying up and down several flights of stairs. Surely that's just common sense? But I'm rambling now...as I said, I think they mean well, they just have no idea how to go about anything.
The rehab side of things is a bit of a bust. DS didn't get a place at the residential rehab centre he was referred to. We do have access to community physiotherapists, but one hour a week doesn't have the same impact that a 4 week period of intense rehab would have. So far he's been too ill to see the community physios, but hopefully he'll be stable enough to see them again soon.
How have things been with you and your family?