Monday, November 05, 2012


I don't think there has ever been a time in my life when the words 'weak positive' have sounded so wonderful.  Yep, thats the latest PCR result - WEAK POSITIVE!

And that's the only thing that is weak about it all - the wording.  It is such a strong positive in our lives, it allows life to go on, allows for the gray hairs to grow slower, the smiles to be wider and the dreams much deeper.

There are way too many people that I have met along this journey of ours that are no longer here......  And I never forget to feel so grateful that my story is different, that Steven is still here, still doing well and still living his life in a wonderful way.  I am only too aware that anything can go wrong at any time, and not only with CML.  The CML has made me more aware of the fine line we all walk, how precious our lives are, its made me more aware that for whatever time we are here, we have to make the very best of it for as long as possible.

That word "anniversary" always brings the feeling of celebration with it, and most often that is exactly what it is.  But in so many cases, that word just does not sit well with me, particularly when remembering people who are not here any more.  I find that saying something like "it's the anniversary of so-and-so's passing", well, it feels as if there should be another word for it, a word other than one that is also used to celebrate birthdays, weddings and so on.

Adrian, Nick, Tyler, Penny, Michelle, Erica and so many others - you all sit in my mind and soul, in my thoughts and sad days... you remind me to live, to appreciate every day.  Diane, Yanni, Hans, Mandy, Matt, Debs and also so many others who are still here, fighting, dealing with CML - you all remind me too to be thankful, to enjoy, to know that life can be as normal as possible with this disease in Steven.  All of you are a part of me, like shadows, in this beautiful place called life.  Thank you!

And mostly, Steven..... you remind me, you teach me, you show me so many things that you are not even aware of.  I admire you, I emulate your attitude to this disease and mostly..... I love you!

Wednesday, August 29, 2012

Back to square one...... plus

Its not the first time that there has been a bump up in Steven's counts.  Its now doubt, not the last time, but that really does not help much to calm the niggle deep inside.

His PCR results have been a little higher before - this time its 0.14%.  But last time it was "too low for a number".  

This is like being a puppet on a string.  Someone or something else yanks those strings and there I go all out of sync again.  I am really interested in seeing this result, though.  I have this very strong feeling that stress has a lot to do with these numbers, and although there has not been stress in Steven's life, not in the horrible sense, but there have been some changes.  All good changes, but all changes come with some kind, some level of stress.  Hopefully by the next PCR, all will have settled down again.  My heart too.

No matter what, even though (and this sounds more dramatic than I mean it to be) the road looks cloudy sometimes, that road still needs to be travelled.  And we will.  Steven is doing a great job of moving forward in big leaps and bounds with his life - I am SO proud of him!

love and light

Tuesday, July 31, 2012

Lovely little box.....

So today it happened again - it has not happened in a long time and it probably has more to do with my state of mind than with the status of disease in Steven.

His PCR kit arrived, all ready for the next test.  I opened it and put in in the refrigerator to cool, as directed and then just as I was closing the door, it really struck me.....

There, amongst normal things of life - water, yogurt, chocolates, etc - there was this Biohazard container!

It really made me stop, made me think and for just a minute my insides turned to jelly all over again and my heartbeat picked up and I felt just a tad weepy.  This is the new normal, this is what even I as mom has got used to.  This happens as regularly as clockwork and with as about as little fanfare as the regular tick tocking of the clock.

But today it grabbed and shook me - just  little.  My son gets Biohazard containers to fill?  Sheesh.

And then what hit me even harder was the wonder.  The wonder of just how fortunate we all are.  That this, this little biohazard box, the waiting of hopefully yet another good test result after over 6 years of beautiful numbers...... this is "all" we need to deal with.


I think so often of those dealing with horrendous side effects, those whose families are torn apart by the loss of those that don't have the fortune of getting these little biohazard boxes or the tests any more...... I think of those dealing with this horrible disease returning time after time, ripping away any chance of real peace of mind even in the good days.

And I sang.  I literally sang the rest of the day away.  And from now on I will welcome this little box each time it sits in that refrigerator, reminding me how incredibly fortunate we are to have Steven doing so well,  how incredible fortunate we are that my son, a brother, husband, nephew and grandson, still can have this test done, how incredibly lucky I am to have an amazing young man doing so wonderfully on all fronts in his managing of this cancer.

I love you, little box :)

Love, light and song.....

Tuesday, May 01, 2012

Grateful all over again!

Before Glivec was launched world-wide in 2001, there was hardly any hope for leukaemia patients.

A Texas-based leukaemia specialist, stated recently: “Before the year 2000, when we saw patients with chronic myeloid leukaemia, we told them that they had a very bad disease, and their course was fatal, their prognosis was poor with a median survival of maybe three to six years ... Today when I see patients with CML, I tell them that the disease is an indolent leukaemia with an excellent prognosis, they will usually live their functional life span provided they take an oral medicine, Gleevec (known as Glivec outside the US), for the rest of their lives.”

I read this (above) earlier today and just sat for a moment in pure thankfulness that Steven is responding so well to Gleevec and that he has the benefit of the progress in these medications.

Wow, I feel really really fortunate.

love and light

Monday, April 09, 2012

More hope!

So many things seem out of whack in life, and yet there is so much hope, so many new beginnings, so many people doing wonderful things, that I find it absolutely necessary to concentrate on the good things - like this nest full of Robin's eggs.  It's hope, new beginnings and just beautiful.

And that brings me to the article in the link I have pasted below, about yet more hope in the fight agains CML.  One day there will be yet another wonderful breakthough in the treatment of this disease.

Here is the website link:

"Since the advent of targeted therapies, chronic myeloid leukemia (CML) has become easier to treat. And while the drugs usually put people into remission, the disease can return with full fury.
Using a combination of Gleevec (imatinib) and another targeted therapy, researchers have discovered a way to halt CML in mice. If this work translates to humans, CML may be wiped out totally."   

Whooo hooooooo!  Read more here...

Chronic Myelogenous Leukemia affects 20,000 people in the United States, but about 4,500 are newly diagnosed each year. It is the result of a genetic mutation that causes white blood cell production to increase out of control.
At first, during the chronic phase, the body produces too many white blood cells. If untreated, it progresses to the accelerated and then blast phases, where the production of immature, non-functioning white cells overwhelms the body, leaving patients susceptible to infection, anemia, and death. The chronic phase may be asymptomatic, with diagnosis being made from a routine blood test. Symptoms of the accelerated phase include night sweats, fatigue, easy bruising, fever, and infections. 
Treatment is with drugs called tyrosine kinase inhibitors (Gleevec, Sprycel, Tasigna), and recent statistics show an 89% five year survival rate from their use.

It feels so good to have people working on this disease, working on getting rid of it.

May it happen soon.

love and light


Tuesday, April 03, 2012

Penny on my mind....

For some reason Penny has been on my mind all day long.

Maybe it has something to do with the rose bush that I trimmed barehanded right after Steven's diagnosis that is now budding, or whether I think of her each year when those roses bloom - but whatever the reason, Penny is dancing in my mind today.

I miss you, lady.

Here's a flower for you.

Love and Light

Tuesday, March 06, 2012

Can it be 6 years?

Yes........ 6 years ago my world was crumbling, it was incredibly scary - no, terrifying, to say the very least.  And that was just me.  Six years ago, Steven had to tell the lovely Laura that their lives had changed, six years ago I tore apart a rose bush with bare hands.

Its been a very steep climb emotionally at times, pretty much a lonely road with me being held up, held together largely by people I had not met - the online support team that kept me going.  Fortunately, or unfortunately, none of my family or friends could truly understand how I felt, how I coped or did not cope.  As much as they tried, and I treasured them being there for me - I am incredibly grateful that they could not understand, as this meant they were not dealing with a cancer diagnosis in their child.

Its been a long six years, but here we are with Steven doing fantastically, living a life closer to 'normal' than many people with lessor issues.  His PCR results are great, his side effects minimal and his attitude just fantastic!

To all those who walked these years with me in any form, thank you.  Thank you from the bottom of my heart.  Whether we are still in contact or not, you will always be part of who I have become, part of my strengths and I will always treasure you all tremendously for this, especially you moms - I carry you with me daily.

And Steven.... well, my boy, I love how you have dealt with your life despite, or because of, CML.  I love how you seem to take it all in your stride with very little drama and a lack of impatience at me and my occasional freaky day around it;  I love how you have taught people to treat you normally, and that you don't shy away from this part of you life.  I am SO proud of you!

Laura, you give me the ability to step back, to relax a bit about the leukemia and get on with my life.  Your taking Steven's CML in your stride too and keeping a beady eye on him means more to me than I think you know.  Both of you are really are an inspiration, a great example of dealing with the big stuff in life in an incredibly admirable manner.  Thank you, thank you from the bottom of my heart.

One thing that I have realized over these years is that as long as my kids - all four of them, and all my wonderful grand kids are fine, then I am fine.

May the next 6 years filled with peace, beauty and strength.....

Love and Light

Monday, February 27, 2012

SO much good news!

And so the weeks and days tick-tocked on by and Thursday rolled around with really good results: weak positive :)

So much has been going on that it really was a short-lived celebration time - minutes, initially.  But as the days have rolled on by, I find myself smiling and just knowing that its ok, its ok again for another while.  I feel so deeply fortunate, so lucky, happy and grateful that Steven is doing so well with his treatment.  The side effects on Gleevec seem to be totally manageable for him - yet another reason for a big wide smile.

And so, I feel light again.

And, on another note.... the day after Steven's great results, I became a US Citizen!  What a wonderful, proud, happy and grateful day that was too.....:)   Here is me (in red) being sworn in... and now a Citizen!  It feels sooo good to belong, to belong here on this deeper level.  What a wonderful week this was.

Love and light and laughter - Annie

Sunday, February 12, 2012

Waiting again..

Sometimes my gut still clenches up like this dried up leaf when we are in the waiting phase.  Sometimes my heart squeezes tight when I think of others waiting for these results knowing that it probably wont be good, and then I break into a fine sweat, a lady-like one!, just thinking that I don't ever want to be in that position!

Steven looks great and seems great - not too long now, just a week or two, and we will once again know that he is doing great.  Please.

Love and light and hopes - Annie

Sunday, January 01, 2012

Open Door time

The standard 'Happy New Year' has been floating around my mind these past few days, for more than the obvious reasons.  Obviously we want to wish each other the best for the new year and obviously one cant go into too much detail with each greeting, but I really do think that it should be more tailored at times.

I could not wish someone who has lost a child a happy new year.  That greeting should be more along the lines of  wishing them a peaceful year, or a gentle year, or something along those lines.  I have been called nuts before, and this is just my opinion.

Today as I took down my Christmas Tree, I had the lights on it burning for the time it took to get all the decorations back in their box.  I took each of those little gifts down and thought of the person it represents and sent them wishes for the year ahead.  So if you feel a little thought, a little smile - it came from my tree :)  Yeah - nuts.

Anyway - here's wishing you a year with all the love and peace, joy and gentle times, all the laughter and hugs you can handle...... a year where you give and get compassion and understanding, a year where you just know that you are loved.

So yes, the door to another year is open - wide open.  For some it will be a breeze, for others level walking and for some it will be an uphill slog.  But it's an open door that we all have to go through.

I wish for you...... a good wish.

love and light