Wednesday, 28 April 2010

Tough times...

The last couple of days have been really tough ones.

Adam being mascot at the match on Monday night was a memory that will be forever treasured. But the joy of watching him meet Baggy Bird, the West Brom players, and leading the team out onto the field was only temporary respite from the fear and worry that have been a constant companion since the start of the week.

Both myself and Alison have a terrible foreboding about Adam's test results. Our appointment with his consultant is on Friday, but there have been recent signs in Adam that have caused us deep concern. We both think that Friday will bring us nothing but bad news. The signs are only small things, but they are enough to strike fear and panic into us nonetheless. First it was his arm - I mentioned it before. Then it was his tummy aching when eating. And now he's begun to avoid putting his heels on the floor because they hurt too much.

Doesn't sound like a lot does it?

But we've been here before. We know how these things start. And we know how quickly they progress too. Where first time round we missed all the early signs, such as they were, now we scrutinise Adam for anything that might suggest things are getting worse rather than better.

To those people that saw Adam sprinting round the tennis courts at bin-ball, or jumping around on the bouncy castle it might seem like I am talking about a different child. But I have videos and photos from May and June last year of Adam running around our garden playing with Jake and Jess. You would never know from looking at them that anything was wrong with him. And yet by early July he was in so much pain he could barely move. So whatever I am being it's not paranoid. I know what this thing is that we are dealing with. And I know what it can do. And I know how quickly it can do it.

I haven't been gripped with fear like this since just before Christmas when Adam's second round of TVD kept getting delayed and put back because of poor blood counts. Back then I became convinced something terrible was going on and the effect of the stress and strain was palpable. It's the same now. For the past two days I've been unable to function properly and I've had to take time off work to get through it. Everything else went on hold too - blogging, tweeting, replying to emails, everything.

As you may have gathered by the fact that you are reading this, and therefore I have written it, my mood has lifted slightly. Don't ask me why, how or when. It just has. Possibly because of the three hundred or so times I have asked Adam whether anything hurt today he has only responded in the affirmative about his feet. And they hurt yesterday too.

As of now we are changing a lot of things about the way we live in the hope that they may have a positive effect on Adam. Our house has been tested for geopathic and electromagnetic stress and we now have a list of things to change. Metal beds, metal headboards, and metal sprung mattresses are out. Adam's electric alarm clock is out. Wifi is out. Extension cables are moving. Cordless telephone is being changed for an eco+ model. Furniture is being rearranged. Bedrooms are being swapped.

We are changing Adam to an organic diet with weekly Able & Cole deliveries, replacing cow's milk with goat's milk, reducing other dairy content, removing sugar and convenience foods from his diet, baking our own bread. Feeding him foods that have known anti-cancer qualities. Replacing cartoned drinks, squashes and the like with freshly made fruit juices. Filtering water, fitting air purifiers. We are giving Adam daily doses of honey and other immune boosting supplements.

We are investigating alternative therapies more vigorously such as Hyperbaric Oxygen Therapy. As long as Adam's medical team have no fundamental concerns we will be starting as soon as is practicable.

All of this may come across as rather desperate. And maybe it is. But there is evidence out there advocating all of the things we are going to do. And who knows, maybe some of them will make a difference. As long as it doesn't hurt why wouldn't you try anything and everything?


  1. Thinking of you all Nick. What a shame I can't think for you and give you a rest!

  2. I can only begin to imagine what you are all going through ... of course who wouldn't try everything and anything within their power to help one of their most precious and treasured friends?
    I will continue to pray for you all.
    Paula xx

  3. Nick, I think of Adam and your family everyday. When I read what you write I really do know what you mean. We are a year down the road from diagnosis now and my fear is relentless. I couldn't even pronounce the word Neuroblastoma then and now my life is consumed by it. Please give your middlesize boy a man hug from us, Lisa and Co... Robyns mum

  4. Lisa, thanks. We think, and talk, about you guys too. I also remember being unable to say the word. Whenever I asked a question I would start to pronounce it and some Doctor would end up completing it for me. Seems like a lifetime ago now sitting here thinking back.