Friday, May 04, 2007

ways of thinking.......

The other day I found a blog written by an incredible young man. He wrote this poem below that made me see things in a much better light. When Steven comes in the door, I do my 'mother-scan'. I check for signs of the leukemia, I check for symptoms and side effects - and then I see my son. Now, thanks to Davo - I see the importance of changing that, and changing it now. I need to see my son in full - but as Steven first, not leukemia first. Thanks Davo! I think you are incredible, for many reasons.
(Davo has given me permission to share his poem - I hope it helps someone else as it has helped me)

Thursday, December 7, 2006 - by Davo

You look at me

But you don't see me

You see a pale face

A bald head
A scar.

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. Visit Davo and send him a hug, a warm thought, a prayer and strength for the road ahead.

I have left keeping on top of Steven's test results alone for a while - now I am back again - gotta be... his last test was great but the bigger three month test is looming again next month, the PCR - no rest with this cancer. Every three months the test tells us if life goes on as normal or gets turned on its head.

January result was good, March test was a little less good but we started testing at a lab in Oregon, this next taken in a months time is kinda critical in telling us where the cancer is going...... my nerves are already getting raw from it again. The blood will be drawn at the beginning of June and it take 3 weeks for the results to get back to us. My real hope during this waiting time is that the waiting does not tell on Steven as much as it tells on me.

Tonight I am in a 'patch' again.... I have to update the blog - and open my soul on there - it feels so selfish sometimes, not being the one with the cancer, but I want to keep it honest - from this mom's point of view.

PCR results this year so far are:

5th Jan '07: 0.019%

5th March '07: 0.076%

We really really want the next PCR to deliver a number below this last one.......So far Steven has only a 1.7 log reduction after a year of treatment - we would love to see that 3-log coming his way. If not, the treatment will be changed/altered and then I am sure we will get that much sought after 3-log.

I have found that reading other blogs help me tremendously. Jon G was diagnosed right at the same time as Steven and when I read how well he is doing, it puts the hope back in a wobbly day. It's absolutely wonderful how each person out there helps others, so often without even realising it. Read Jon's blog at:

This circle of people dealing with cml is honestly amazing - I could never have imagined the help that is out there 24/7 - in blogs, posts, news groups and the wonderful people that email and call.

I had so much to say - so much to get off my mind, but with losing all my writing not once, but twice! tonight and because I have to be up really early tomorrow for painting class again, I am going to close this off and hopefully tomorrow I will remember what it is I wanted to write here tonight :-)

Strange - I started writing with a heavy stone in my stomach tonight, thinking of those PCR's, and after reading that poem again and pouring the worries into words, I know I will sleep well.

Thanks again Davo. You remind me of Penny - your incredible strength and concern for others and your ability and willingness to share, in a time like this...

Love and Light


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