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Poem from CML sufferer

Hi everyone,

My name is Sophie. My husband was diagnosed with AML in September 2004. Against all odds he kicked it in to remission and there it stays. We went on to be ambassadors for Leukaemia Research.

One of my closest buddies Davo was diagnosed with CML when he was 17 years old. Davo lost his battle with leukaemia this year aged 21 years old.

I know exactly what it is like to meet someone new who says "oh you have leukaemia? yeah I know someone who died of that" because it happens to me all of the time. So I hope I don't sound too similar telling you about Davo.

He absolutely didn't want sympathy. He wanted to make a difference to others in his situation.

Davo had a rare talent and a very big heart. He had the ability to touch the world for the less fortunate and through his words and poems, make it a truly better place.

He started a blog and posted some of his poems and thoughts there. They made such a difference to people and he was so proud to receive emails from relatives who had had their eyes opened by his words.

So maybe you'll like some of his poems and maybe you won't. I just wanted to share them.

Soph

Davo's Blog

LOOK AT ME

You look at me

But you don't see me

You see a pale face

A bald head

A scar.

A disease.

An object of pity.

You don't see the person.

The determination.

The fear.

The vitality.

The passion for living.

The capacity for love.

Open your eyes

And look without prejudice.

Look beyond my hat.

Look beyond my illness.

Look into my world.

See the many pieces,

not just one.

A complete person.

Open your eyes

And see me.

Hi Soph,

What a moving poem, and how moving is the rest of his blog.
Such a tragedy for a young man to loose his fight.

I know what you mean when you speak about people's reactions to the word 'Leukaemia' - there is something rather frightening about the word I think for many people.

I worked in a hospital (when I was much younger) which was the regional centre for treating childhood leukaemia. In those days, (some 35 years ago) the prognosis was nowhere near as good as now. But I think my experiences then have had an impact on myself, when now in later life I have to face the fact of my wife having cml.

Again, the prognosis for cml is so much different now than it was even 10 years ago, and I'm sure that with all the options being developed things will get better for cml sufferers.
Glad to know your husband is in remission after having AML.
Best wishes

Paul

Hi Paul,

Thank you very much for your reply. Yes, Davo's blog is very moving. One mother of a CML sufferer in the US wrote in to say how much one of the poems changed the way she looked at her son and treated him. It made Davo so proud just to have that effect on one person.

When my husband was having his 'aggressive' chemo for AML and there was lots of tutting from doctors and 'well we just don't know if he'll make it to the end of the month' type conversations, I remember watching every single drop of chemo pass go down his IV line and in to his PICC line. And I was so grateful for whoever it was in the world that created and researched this drug.

It made me go looking for the scientists and the research institutions and charities that help fund them. And that is when I found out exactly the same facts you have just explained, how bleak the outlook was 40 odd years ago.

I atttend the annual Leukaemia Research conference this year and was filled with so much hope and enthusiasm for the future as the scientists who presented their findings all had very positive results on the trials they had been running. I believe there will be 2 clinical trials in the UK for leukaemias in 2008. I am so glad about it.

All my very best wishes to your wife and to you too.

Soph

Hi Soph
Thank you for posting Davo's poem and the link to his blog. An inspiring young man and such a waste of a young life.
I have had CML since Feb 1999 and then acquired secondary AML in 2005 - had chemo and then went on to have a transplant and lived to tell the tale. However, I have lost count of the number of people I have met and befriended who lost their battle with this disease and every time it happens it hurts just as much if not more than the first time. Having said this, these days more and more people are surviving leukaemia with the new drugs available and the many trials which are now happening in the UK. I am not up to speed with AML but I am sure that similar progress is being made.
I do wish your husband a very long remission.
I am leaving a message for Jayne below to put the link on the site she is developing for children with CML.
With very best wishes to you both.
Elizabeth
ps. Jayne - May be you could put the link on your site. The poems are inspiring and reflect so much how children deal with leukaemia.

Hi Elizabeth,

Thank you for your lovely, inspirational reply. It's always so good to hear about more and more battles being won against the big L and I very much look forward to seeing a cure and prevention in my lifetime.

My husband and I are one of these annoyingly smiley couples who refuse to be scared of leukaemia or beaten by it. It already took enough time, energy and happiness from us during treatment, it won't get any more!! :-) The power of positive thinking! My husband's band played some benefit concerts for Leukaemia Research and we had some wristbands made up with 'WELCOME TO DEFIANCE' written on! Summed it all up!

I would very much like to hear more about the new website you mentioned Jayne is working on. If there is ever anything I can do to help, please do not hesitate to ask. I do a bit of web design.

Soph

Hi Soph, Have only just picked up Elizabeth's message.

Have just had a look at Davo's site and poems and they are truly wonderful.

His story has particularly struck a chord with me as Aaron is also 4 years post transplant and we do very much become a bit complacent that he is cured. Reading Davo's story and poems very much kicks us back into touch and makes us realise what could still happen.

The children with cml site is very nearly ready and I think it would be a great idea to feature Davo's site and poems, maybe we could have a section just for poems? I would also very much welcome any help with the site as I am NOT very good with web design and have struggled a little bit.

Much love to you.

Jayne x

I would love to help you if you need it. I look after some websites for bands and an artist so it's really no trouble at all.

Drop me a line at hoonay2003@yahoo.co.uk at any time and I'm more than happy to help!

Soph x

Hi Soph, Have emailed you.

Jayne xx