Fear (by Sue)

I have this constant fear, what happens if he relapses. I don’t think I could do it. Watch my child die or go through hell. I suppose if it happens somehow I’ll get through it for him. I keep asking the nurses about the statistics of it all. I understand statistics. I know what high risk of relapse means. But I haven’t got any numbers for the percentage chance he has got for this relapse. I’m told the most likely time for relapse is the 2 years after treatment has finished. I know if he relapses it’s really, really, really, really bad. The thing is I desperately ask Rosie (the oncology nurse, not my 15 year old niece) all these questions, but I already know what I want to be told. I want to be told it’s going to be alright. That it doesn’t get any worse. That we just have to get through these 3 years of treatment and he’ll be ok. Then I get a small piece of information and mull it over. I constantly worry that we made the wrong decision about not going into the trial. But I don’t know the statistics. And what if the worse thing happens and it’s all my fault. And in my head it’s the worse possible scenario and I don’t think I can do it.

Love Sue

A very rare update from sue. But as usual Jez has so much work on there is only just enough time for the kids and me (and of course footie and the guitar)
It’s been a hellish couple of weeks: we started intensification. We’re now in the middle of it and have been given a week off as Joe’s bloods haven’t improved enough for the next bit.

I knew the first 3 weeks were hell and the drugs knocked the stuffing out of joe. But I started out upbeat – IF and IF we are lucky, this is the last one we will have to do. So I kept counting, the first doxorubicin only 2 more left. The Joe got poorly, really poorly. We ended up in hospital for 5 days and then they gave him the last doxorubicin. He had a line infection and a chest infection. He came home on steroids, stopped playing, stopped talking, stopped moving. Sat on the sofa and moaned about how ill he felt. My heart broke. I heard Sammy playing with Molly and George from nextdoor in the garden and thought Joe should be out there too. I thought why us? I thought it’s not fair. I thought I can’t do this anymore. Jez said he didn’t remember it being this bad last time. It was, but we’d forgotten and Jez had been at work last time. It wasn’t so obvious, as everyone else was at school. So there was no comparison of what a healthy child should be doing.

Slowly Joe started to improve, we had a lovely Sunday at Eaton park with Theresa and Simon. Joe played cricket, a bit. He played a funny football game and talked to the other children. I even saw him smile. Life wasn’t so bad.
Monday, and I dragged him to school, desperate in my heart that he was well enough for it. He came home a t 10.30. Tuesday and we did the same. He came home at 12, after being cajoled through the last hour. I wondered is he ever going to get better from this. Today, he did the whole day, played outside every playtime, took part in PE. Kids are amazing.

I’m back to counting again. Only one more….. I’m even starting to count down the weeks he has to have the Hickman line in.