Joe's Dad
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Joe has leukaemia

Joe's Dad
Posted by
15 Oct 2014

My four year old son, Joe, has recently been diagnosed with Acute Lymphoblastic Leukaemia (ALL), and this blog will track the course of his treatment, and life around it. For regular posts see https://kamransword.wordpress.com

Day 1 - All Change

There have been a few moments in my life when a new door, a trap door, has opened, and I have fallen through into a new world, previously unseen and perhaps only ever dimly imagined. Suddenly everything changes and you are floating, tumbling in free fall. The world around looks familiar, but distant, as if seen through the glass screen of a capsule. Colours, textures, relief, strangely sharpened, but beyond reach.

Moments before, Joe and I had been tussling over the i-pad camera; an instant now frozen in time, Joe’s victorious grin, a tousle of hair, a sideways glance, unaware of what was about to change. Then, across a threshold, that instant becomes ‘before’, and we are into the ‘after’.

‘Leukaemia’ echoed through my head. I don’t think that I reacted as I heard the consultant’s gentle words. ‘Are you surprised?’, did she say that, or not? Perhaps just she was just checking that I was still there, on the end of the line, I don’t know. In a way, it wasn’t a surprise – this sort of outcome had appeared on the horizon as a remote possibility as soon as we had noticed his neck, so the element of surprise was no longer there. Now, in the new ‘after’, there is no time for shock or surprise to intrude. We have a healthy four-year old who has just become a very sick four-year old, and we all need to find our ways across the threshold into our new life together.

Comments

16.10.2014

Thanks so much for sharing this blog!

Diagnosis is a very difficult time for the whole family with so much to get your head around. I remember feeling shocked and a bit numb initially after hearing the news but this very quickly turned into thoughts on focussing on what my options were and what I needed to do to get better. Life had changed forever in that instant and when I look back at my life to date I see it in three parts - before, during and after leukaemia.

I hope Joe is doing well and look forward to reading the next blog update. If there's anything that I or the charity can do to help, please don't hesitate to get in touch.

24.10.2014

Thank you - having a space to share our feelings and experiences, and hearing back from others who have shared similar experiences is a tremendous help!

03.11.2014

So glad that your finding the whole blogging progress helpful. Going forwards we really want to provide a space where blood cancer patients and their familes can come to find information, ask questions, share stories and support each other on their respective journeys.

We regard emotional support and well being as an area of vital importance and we want to empower patients to take control of their blood cancer. Establishing a core of bloggers talking about their experiences with blood cancer is the first part of this. Going forwards we want to provide forums where you can talk about issues and ask questions which in turn will allow us to understand where more needs to be done to help patients. We're also looking to introudce a live chat facility where you'll be able to chat with others in the community.

I hope that Joe's well and look forward to reading your next update.