Why a bike ride and why Rainbow Trust

Hello dear reader,

Thanks for coming and checking out what Iain and I are up to in July 2017. This blog site should be a funny, uplifting and interesting place to be over the next few months. 

I wanted to pause and inject a serious note, briefly, in explaining why we are riding for The Rainbow Trust. 

In 2008 my wife Kate and I were joined by Iris, our first child. She was a pure delight, and when she was six months old we decided that a week camping in Scotland was a good idea for a holiday.

Typically for a Scottish summer we returned home with stinking colds. Iris did not get better, on the evening we came home she collapsed and we found ourselves being rushed through our local A and E. 

After a midnight sprint through town in an ambulance and another transfer to Kings PICU we were told that there was a mass growing on her liver, and to prepare for the worst. A genius surgeon operated after a week of waiting and watching, he resected her liver along with what we would later find out was an aggressive Rhabdoid tumour. 

She was still alive but with a year of chemotherapy at Great Ormond Street to deal with.

It was then we were introduced to Mary at The Rainbow Trust.

With no car we were travelling into town by train, or expensive car sharing schemes – a member of our home care team heard about this, and referred us to Rainbow. The party line is that they support families with children with life threatening and terminal illnesses. What they really do is send an incredible person to help you and your family. We got Mary.

They work hard to make sure your family support worker is well matched to you – and we all just clicked straight away. Mary would get us to hospital, help with shopping trips, make sure we knew what was going on, and generally ease the pressure. 

A tiny Lancastrian, she’d phone and announce herself ‘it’s Mary love’. She will always be Mary-Love to us.

We were driving home from GOSH one morning – I had left Kate and Iris for another week of treatment, and was feeling quite flat. Mary knew exactly what to say, or how to lift a mood. ‘Did I ever tell you about the time I was banned South Africa?’ she asked. It transpired she had spent years writing to Mandela, and the apartheid government wrote her a shirty note telling her to never visit. A genuinely funny person, who understood others. 

For the next year Mary would turn up at our flat early in the morning, transport them to hospital and bring them back a few days later. She was a grateful constant in our lives.

Iris finished her chemo, and normal life resumed. She would go in for monthly scans, to check her liver. For a while everything was alright, until one month they spotted something on her liver. Test after test after test were carried out, and we were given the worst news. Her cancer had returned, the chemo had not worked, and there was nothing we could do.

We took our little girl home to face an unfair and uncertain future. Mary remained there for us. 

Months past, and Iris remained well enough – we had our final holiday in a much loved corner of Suffolk. We decided that we would care for Iris at home, that she would not go into a hospice. With the right mix of GOSH, local care and Rainbow support we were able to give her that.

Iris died quietly at home, surrounded by the people she loved, in October 2010.

What The Rainbow Trust do is incredible, they allow families to focus on the important things, to have time with their child and not to sweat the small stuff. The mundane and everyday is not important at that point, your focus is required elsewhere. That we were given that opportunity is something for which I will remain ever grateful.

And that I why I am going to mount my trusty steel steed, and along with my dear friend Iain, ride like we’ve never ridden before, to raise money to allow other families that same important time.

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