Monday, 26 April 2010

Rubbish morning, rubbish post...

Woke up this morning feeling terrible. I could feel the pressure of tears behind my eyes waiting for an excuse. And I could feel it in the pit of my stomach too. It's the kind of day when you have to force yourself to eat breakfast because you know it's the right thing to do, not because you want to.

I was going to write that I don't know why, but of course I know why. It was because there's a more than even chance that Adam won't be here this time next year. What I really meant was I don't know why today, and not yesterday, or the day before.

I think, rather perversely, it was because Adam had such a good time at the weekend. First at bin-ball on Saturday and then at tennis and cricket on Sunday. He spent all of yesterday running around, playing hide & seek, joining in with the tennis, playing football, jumping around on the bouncy castle, throwing wet sponges at me, throwing eggs at Jake(!). He was doing all the things that the other little boys and girls were doing. He came home, had a rest on the sofa, and even went back outside to play football with Jake and Jess until it was time to come in and get ready for bed!

Several people commented how well he looked and that if it wasn't for his lack of hair you would scarcely be able to tell he was ill. And it's totally true. And I totally agree. And it's good that he's like that, far better than the alternative. And I should be happy about that. And I am. But at the same time it breaks my heart to see him so happy, active, bubbly and full of life. And yet I know the overwhelming odds are that it's not going to last. He's going to go downhill, he's going to endure more pain and suffering than most of us will ever know, and then he's going to be taken from us for good. I don't know when. Of course I don't even know this will happen. I pray it won't. Ever. I only know that at best this fear and worry is a revolving nightmare that will go on for years and years. Even if this disease goes away it can come back at any time even 4 or 5 years down the road. And if it does the chances of it going away for a second time are almost nil.

Yesterday morning Adam complained that his arm was hurting. Most parents would look for a bruise and put it down to the bumps and scrapes that children get into. Us? If there's no obvious cause we immediately start thinking that it could be the Neuroblastoma. That's how it manifests itself. Not that we knew it at the time but all his coccyx pain was from the cancer that had invaded it. We know that he has cancer in his bones, but the onset of pain would be an indication that the disease had become progressive. It would be a terrible sign and we live in fear of it. Every day. Every minute of every day. Every second of every minute of every day.

Projecting forward even if Adam is one of the lucky ones, even if he clears this disease and stays free of it, we are going to be living this same nightmare. Every time he complains of a pain, or spikes a fever, or he refuses food, or becomes more tired, or doesn't sleep properly. All the things he did before, that every child does at some point, but that we now know can be caused by this disease. When people talk about being 'cured' there isn't really a concept as such, there is just a diminishing probability of the disease returning the longer time goes on. We would continue to live in fear, heightened whenever there was any sort of problem with Adam's health. But it's okay. It's fear I'm happy to live with because it would mean Adam was still with us.

Reading this post back to myself I don't even know why I am writing about this stuff really. We are a million miles away from getting to that position. But I suppose it just demonstrates the tangled mess of emotions and thoughts and fears that race round my head whenever I let them get the better of me.


  1. Nick, you are such an amazing person, and your family are inspiring so many people. I feel for you, I can't imagine the pain and anxiety, but I talk to my family and friends about it and we so hope beyond all hopes that Adam will be lucky. I'm sorry and live each day in appreciation of what I have. I wish as many of us do that it could all just be better. Keep fighting! Heartfelt prayers and thoughts, Sukey.

  2. And another thing - thanks for a lovely Sunday afternoon. I'm starting appreciate that we might actually have a community round here! All the best

  3. Hi I've just signed up to sing in a choir to raise funds for Adam. I'm going to send this onto my staff team at chelsea children's hospital school. I just wanted to say that you sound like an incredible dad and words fail really. Just will pray for all of you and will make sure more people hear about Adam, Helen