Monday, March 30, 2009

Balancing act..

And so yet another PCR screams up on us.  Are there only four in a year or is that the years are whizzing by so fast that they just seem to be piling up like ice on the frozen shore?  It just seems that every time I turn around, it's again time to order that box of goodies.  And then that wait.

It's a balancing act.  All of life is, but when a kid has cancer, it has a bit more of a sharp edge to it.  So like this dew drop on a tiny leaf, I feel as if life is tilting just a little again.  No big problem, no freaking, just a little tilt until we get those results that are going to be great, or even better, again.

In the meantime - Steven and Laura close on their house tomorrow and start moving in right away!  Wow - what it must be to buy a house at that age... I was much much older before having that opportunity.  It's totally wonderful to see him so excited, the boxes piled up in their apartment and ........just to think that one point I wondered if he would ever be able to do any of this - somehow that makes all this so much more special.  Right now they live literally  down the same road as we are on and many days I see him coming around the corner on his way home or leaving - always made me smile.  I really am going to miss that.  But I am so happy for them both.  And their wedding is only weeks away now too...

So, even with the little tilt, I am one really happy, blessed and fortunate mama....

love and light

Friday, March 27, 2009

Adrian's Legacy gets teeth!

Oh wow - this is awesome....... Remember Adrian from Baldy's Blog?  Well, these two video's below are of the most inspiring, strengthening and touching videos I have watched in a good long while.  Adrian so wanted to make a really big difference and.......... well, there is so much I could say, but it would definitely pale by comparison to what is said and shown in these short spots.... Please watch them.  

You can also click the title of this blog and it will take you to the Anthony Nolan Trust site for the "Register and be a Lifesaver" campaign that Kay sent me.

The strength and determination of Kay, Keith and Carrie and so many others, to keep Adrian's work going, is just beautiful...  There really are few things more awesome than people working together to really make a difference in such a beautiful way.  My deep, deep thanks go to everyone who keeps on going, keeps on making the world a better place, one donor at a time.

Kay - you guys are just amazing.

Love and light

Saturday, March 21, 2009

Two years ago.....

Two years ago, this little sprite, my youngest grand daughter arrived to brighten our days... and she has done her job really well.  She is a pure delight, gorgeous, cute and just plain beautiful too......  Happy Birthday, McKenzie!

And tonight at her party her sisters, some friends and  family gathered together to celebrate her life I again realized how incredibly fortunate I am on so many levels.  

My mom came along with us which gave us a beautiful opportunity to get a few photos of four generations of girls! There are too few times these days that this sort of get together happens and we all took full advantage of it.  

And I watched as Steven and Laura arrived, eliciting screams of joy from the little girls who all rushed across for hugs from Uncle Steven and Aunty Laura.

And I was humbled by the oh so very deep feeling of thankfulness that Steven is doing so well.  I watched as he hugged Lisa and greeted everyone else, I watched that easy smile and laugh and Laura standing there right with him and I thanked everything that could be thanked.  And then did so again.

I remember the feelings of terror of three years ago when I wanted to cry at Lisa's wedding, not yet quite believing that he would be ok, that he would be around to be an uncle or that we would have these happy gatherings.  And so today I thanked all and everything that could be thanked again and settled into a lovely evening of celebrating so many things.

Cml is not foremost in my mind at all - but it's definitely there.  Steven works with us on Saturdays now which is wonderful.  I get to spend some time with this lovely young man, its good to see how quickly he is learning, but I also get to 'mama scan' him over a good few hours. And I have to admit that cml only enters my mind a few times during the days spent with him and it's definitely not a gut wrenching feeling anymore - rather, it's a feeling of being content with the way things are now and a wish that they stay in such a good place .  Nice :)

Here are some people that need you to send them good thoughts and prayers too......  
"Big D" is another mom who's son, Nick, is going through some intense treatments right now - she has an incredible way of writing and sharing her feelings and fears, wishes and thoughts. 
"CC" She has just started heavy duty treatment for ALL.  She started off with CML and it moved on to ALL.  
Tyler is doing very well is is an inspiration for others on the transplant road! Keep going, Tyler and Mandy!  I follow you regularly and look forward to your 100 day mark and then the 1 year anniversary..... :)
Hans, Not only is he dealing with a fairly new cml diagnosis but they have just had a brand new addition in their family - Congrats to you all!
And Matt  Another one responding well to Gleevec and just got wonderful 'greater than 3log reduction" results!  Awesome news.... 

So - cml is very much in my mind and I do spend a good amount of time still either reading the blogs of others, hoping and wishing for good news and then sporting happy smiles when that happens.  Others that are not doing so well, tug at my soul and help me balance my emotions and keep me in touch with reality, encouraging me to stay aware, awake and alert to this disease Steven has.

But I am also learning the importance of spreading my emotions a bit more evenly these days.  I am learning to really enjoy being involved, fully involved in things that have nothing to do with cml.  I am learning to look at daily happenings and just appreciate them for what they are and not see them tinged with leukemia.  It's a long process, but I know that I am really fortunate.  I think that slowly 'letting go' of the fear and just living for today is the best I can do.

It's only weeks before Steven and Laura move into their own house, and then just a few weeks later their wedding and the wonderful sounding honeymoon vacation.  So much good happening - so much that is so good.

So much to be thankful for.

love and light

Monday, March 09, 2009

Three years!

It's amazing what a difference three years have made......   This past week was that very dark week from hell for all of us three years ago when we first heard that Steven had leukemia, and on Friday 6th March 2009, it was the three year mark of the cml diagnosis. 

The first year I bought a cake - not quite sure what the heck I was doing or whether I was celebrating one year more of life or just trying to find a reason not to let the tears flow - one cannot cry with a cake in front of you!  The second year we had Steven and Laura over for supper and spoke mostly of other things, but gave cml a short "shot in the sun" with a toast to a good and happy and healthy two years, even though cml was in the front of my mind.  This year, the three year mark, we ambled back into town after a wonderful 6 weeks traveling through Baja Mexico, had pizza with Steven and Laura and cml barely featured at all, even in my mind!

We celebrated that this past week for them had been full of sending out invitations for their fast approaching wedding in May - it was also a fairly nervous week, but not because of cml, but because they had put an offer in on a house!  And two days before his diagnosis anniversary, the offer was accepted!  They are buying a house......... 

In three 'short' years, this child of mine has truly become a man.  Not because he is buying a house, not because he is getting married, not because he has leukemia - but because of how he has taken it all in his stride and bettered his life and his outlook despite, and probably because of his diagnosis - and, of course, because of  the lovely lady Laura!

It's been quite a ride, these three years.  The people we have met, the love and encouragement we have been given and the growth that has happened in so many ways.  

When we were first planning this trip away, I purposefully planned that we would be gone before his last pcr results came back in..... and it worked very well.  I know that nothing I can do will change what that result shows us and it was my way of actually living that knowledge.  Steven does this every day by getting on with all aspects of his life, doing everything he should and would be doing despite his diagnosis.

When I heard that his offer on the house had been accepted and I realized the timing of it, I cried a little.  Just a little - but it was a happy cry, one of wonder and thanks and appreciation and pride in these two young people who are moving on with their lives.  

What a difference three years have made in all of us..  and I am incredibly grateful and am so enjoying the peace in our lives right now.

love and light