Tuesday, November 03, 2009

Locked but lovely.....

How could anyone with a child with cancer be feeling lucky and happy and fortunate and blessed?? Well I do. This past week since we have been back, I have spent a fair bit of time catching up with CML news and blogs and support groups and people and..... well, I feel so incredibly fortunate that Steven is doing so well. I also feel so incredibly fortunate that he takes this disease seriously enough that I don't have any reason to worry about him taking his meds, but at the same time, that he does not let it run or ruin his life.

Unfortunately I found a couple more new blogs and websites of people recently diagnosed with CML... http://cancercloud.org is a new website for information, research, patient and care-giver information and support. Allison's 84 year old father, Angelo, has been diagnosed with CML and they have set up this site is dedicated to him.

Here is Ryan, recently diagnosed and fast learning about the effects of taking Gleevec. Head over there and leave him a message and some encouragement. No matter how 'easy' it goes, those first months are never easy at all.

And then there is Rassie who is not only dealing with a new diagnosis of CML, but fighting to get the insurance company to approve Gleevec for him as well as dealing with a work related injury that has him in hospital, rehab and a wheelchair at the same time! His wife, Amber writes the blog in a wonderful and calm way.

Reading these blogs brings back those early days of cml, when everything was so new, crisp and terrifying. Those days when a comment from someone, anyone, counted for so much -like a hand to hang on to in the scary nights. Just knowing that others cared really made a huge difference in my ability to be able to process it all and move forward. It still does.

My nephew got married this past weekend, it was a lovely wedding :) and at the end of the day I realized that once again, I had a normal day! A day where cml flitted into my mind only briefly and with no serious thoughts to keep it company, a day where I was once again, fortunate enough to be able to take photographs of everyone having a wonderful time, my son included.

How happy, blessed, lucky, fortunate and all other wonderful descriptive words you can think of, I felt. And feel.

Sometimes the door to the way of life we expected is irrevocably closed and locked. But does that mean that there is no beauty in that too? This road has brought me so many wonderful people, amazing friends and so much love and light and laughter and growth and beauty and peace - yes, peace. That door to our other lives before CML is permanently locked, but this side of it is beautiful too....

love and light

1 comment:

Amber said...


Everytime I come to your page, read your blog, look at your beautiful photos... I breathe a little easier. Thank you for your kind words and your support. And thank you for passing on Rassie's story.