Tuesday, May 20, 2008

This week

It's been a good and gentle week and at the same time one that is filled with all ranges of emotions, from totally at peace to feeling so much pain for a friend dealing with what must be the most difficult thing a mom has to do - prepare to say goodbye to her child. I don't know that its possible to really help anyone in this position, apart from trying to keep giving a dollop of 'normal' where possible. At times its difficult to know what to do, if anything, because the need to share my uselessness in the situation is great and what is 'normal' seems so absolutely trivial in the face of her circumstances. To ask questions means then that they need to be answered and I dont know that I could do that under those circumstances. Not to ask questions could close a door that is not really closed - maybe one needs to talk about it, to have the questions to answer. To share my sadness feels selfish and unnecessary as she has enough of her own, but not to, could be seen as not 'getting it'. But then there is no way I could 'get this'. This losing a child must be a very lonely road indeed. There is no one around you that can possibly totally get how you are feeling, no one that can possibly totally understand. But if you need a hand to dig your nails into while hanging on - mine's here. Always.

And on this side, Steven is doing great! We are so absolutely fortunate that he is reacting to Gleevec so well. I remember so well being scared, very scared and am really enjoying this feeling of quiet and peace that has arrived since the last PCR results came in. Even in these quiet days I find myself counting the weeks till I need to order the next PCR kit from Oregon - timing it just right to get it here in time for Steven's appointment for his labs. Those people who send out the kit are really wonderful....it arrives exactly on the date we pick and they are always so kind and friendly and keen to make things work right. It would be wonderful if all doctor offices had that feeling around them.

You know something strange? I was listening to an interview with Adrian from http://baldyblog.freshblogs.co.uk/ (go read it if you have not already!) and I heard this small little line...... I KNOW I have heard it before. I know I have, but this time it resonated differently than the other times. "Leukemia is cancer of the bone marrow." Well, duh - I knew that! So why did it sit on my heart for hours this time? - well longer than that, evidently as its still niggling at me. Had I pushed this thought out or have I come so far down the road in two short years that this is just re-facing reality? No, it does not put me into a wobble or tailspin, no it does not scare or frighten me any more than I have been, was or am. It's just that it.........well, how do I explain it. It was said differently, it was like hearing something new yet knowing that its not new, but seeing it in another light - yet not being any surprise. Nothing has changed so maybe its just that its more often referred to as a blood cancer, and when I again heard the words 'bone marrow cancer' - it felt deeper somehow, deeper than blood cancer. So the question then comes to mind - if its a bone marrow cancer, why is it called a blood cancer? Same thing? Ok - I know, that's why the internet is there and I will go and look that up.

The more reading I do, the more I meet and talk to people who have either been through a transplant or love someone who has - the more I realise just how incredible it is that donors are in such short supply and even worse that the opportunity and process is so unknown! Before Steven was diagnosed, I was an organ donor - you know, on the back of the drivers licence and the instruction to family for after I died. But that was all. It never crossed my mind that I could do anything as important as donating marrow and having the chance of giving life while I am still living! What a thought that is. I always imagined that a transplant entailed a kidney, heart or other part that could only be harvested once I was gone......... Imagine being able to give someone another chance at life and then actually maybe being able to meet them and actually see the outcome of it all? Wow. Just imagine!

How many times have we all heard others saying "I want to help people" when asked what they want to do when nearing the end of their school years especially? Well! Sign them up! Get the programs into the colleges and schools and universities, teach the kids from young so that they can look forward to being a potential donor when they get to the correct age. Make it what it is - critically important to so many people, their friends, family, kids and communities.

I think its wonderful that Adrian is doing this in the UK and I am hoping that it will overflow in a big way to other countries... lets all help get this moving in the right direction - we never know when its going to be one of us needing some healthy marrow. We never know when one of us will have the opportunity to help save a family, a community. It's never just one person affected by cancer - it's absolutely everyone around them too.

And now - here's introducing Sophie - Sophie is our newest member of the family and is already proving to be a perfect pal for Allie.... She is only 3 months old, but already the same size as Allie and is a total cutie.

And I have learned that there is absolutely no possible way to not smile when watching two pups screaming around the garden with great gusto.

love and light


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