Living With CML

Waiting again..

2012-02-12T23:47:00.000-05:00

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

Open Door time

2012-01-01T23:04:00.000-05:00

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
Annie

It's Christmas again!

2011-12-23T23:51:00.000-05:00

Where has the year gone!? It's difficult to believe that it's this time again - Christmas. It snuck up on us this year again....... I think I go through this denial every year - one day I will simply get ready in time and it will all feel right and right on time.

Once again I have my Christmas tree up and once again it is covered with little gift decorations depicting all the lovely people in my life. Some of these little gifts have come with me the past few years, and others are newly added, but they all represent someone who means a lot to me, who has shared themselves, their fears and dreams with me too. They represent the incredibly strong, courageous people all over the world that have changed me into the person I am. I like me, by the way, so it was a good change!

You have all taught me strength, love, peace and acceptance and understanding even while going through tough times yourself. You have made me laugh, cried with me, walked with me and shared with me..... you are the gifts in my life.

And you are on my tree!

And a candle in memory of those who are not here to celebrate Christmas with us - I burned a candle for you all, for you and your family left here to make sense of this life we have.

Here's thanking you all for yet another year with you and wishing you all a simply beautiful Christmas and a New Year that is filled with love, peace, laughter and peace.

Love and light and thanks
Annie

I just love this.....

2011-11-29T20:42:00.000-05:00

I took this photograph out west somewhere. It's a photograph that has lived in my heart and soul ever since. I wish I could find this man and thank him for all the inspiration and hope he has built in my life.

Stop 'n Go......

2011-11-20T20:42:00.000-05:00

Ok, the new pcr results are in......... and Steven passed again! With a little jump downwards this time, we are all fine and can get on with less stressful stuff for the next three months again.

This photo reminds me of life around PCR time - stop 'n go, gas and anchors....
Not quite sure how to go on until the results come in, but at the same time determined to go on no matter what, but that tiny niggle of doubt, or is it fear, lurks in the back of my mind, making sure that going forward is not a totally smooth road.

But, once again, the worry was for nothing - it's good. It's good again. It's good still!

And so life will tootle on forward, filled the deep gratefulness that Steven is still responding to his Gleevec well, that there are no adjustments to make and that he is feeling great too. It's quite amazing that no matter how much or how little I worry about these quarterly results, I am always deeply grateful afterwards. Well, I am always deeply grateful, but it seems to come with a special depth in the days right after good results. It's times like this that my heart aches for the mom's who did not get the good news results, for those mom's who have lost their children to this horrible disease.

And so.... till next time.

love and light
Annie - one very grateful, very relieved mama :)

It's been a while...

2011-11-13T21:07:00.000-05:00

Steven had his pcr drawn about two weeks ago now... and his results are about a week away. And I am about as "un-frilly" as I have ever been about it. He looks good, sounds good and is getting on with his life in a very normal way.

It's quite amazing how 5 years, well, five and a half, can feel both long and short at the same time. I see advertisements with Christmas trees in them already and it makes me aware of just how fast the years are screaming by. This year my Christmas tree will again be filled with little gifts depicting all the treasures and gifts I have received through Steven's cml. All the friendships, the experiences, the learning and the love I have been shown, I love having them decorating the tree.

Life sure takes some twists and turns and Steven having cml is the biggest to me. It has made the greatest impact on my life, my growth, learning and understanding. Its affected my life in ways that I never imagined and hopefully soon I will be able to really start giving back somehow, to help others the way they helped me through this dealing with cancer in my child. I know that I am incredibly fortunate that Steven is responding so well, and every day I am extremely grateful for this. At the same time it has been a heck of a ride - even with everything going relatively smoothly. There were many times that I just did not know how to go on, how to 'just be'..... but there was always someone there to walk with me through those tough times. So many of those times it was someone that I had not even met, someone walking a similar road that just 'got it', understood and was there for me. It actually brings tears to my eyes just thinking how that worked, again and again over all these years. What wonderous, amazing years these have been!

My Christmas tree is not going to be big enough to carry all those little gift decorations! What a thought.

R.I.P Steve Jobs

2011-10-06T11:23:00.000-05:00

“Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart. Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma — which is living with the results of other people's thinking. Don't let the noise of others' opinions drown out your own inner voice. And most importantly, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary” -- Steve Jobs

Taking it easy......

2011-09-08T10:28:00.000-05:00

And so the results came in - all ok again. Just a little just upwards, but nothing that has not happened before.

As a matter of fact, I have been so 'relaxed' about it all that I have not updated this blog with those results - even though we got them in a couple of weeks ago already! Sorry........

This is a strange and new place for me to be in, this lack of real worry, of acceptance that those results will be ok, less ok or more ok - but they will be just what they are going to be.

I know it helps tremendously to know that Steven is really good about taking his Gleevec, that Laura keeps on his case and that they both know and live the importance of doing this the right way. Steven looks great and life is pretty much cml free - well, free of the daily thoughts and worries. Few side effects still make that easier too.

He, we, are so incredibly fortunate that he has responded so well to his meds. I read other's blogs, I read the boards still sometimes but I am mostly just enjoying wallowing around in the sunshine and sand of good and peace-able results that allow me to do the 'normal' stuff in life. I am hugely aware of how precious this time of being able to escape it all is, I am very aware that everything can change in just a second and that so often stuff does just that and then I flap in the wind for a while before finding my feet again. But so far, my feet have landed squarely on the ground, adaptions are made and life goes on in a new format. I wish for us all that nothing regarding Steven's results change dramatically - well, unless of course its those numbers that head downwards

I have one of those little voices in my head that tells me that I need to start 'giving back' or paying forward.......... either way, I sense that sometime in the not too distant future, I will be involved in something along that line, not sure what - but for now, I am still mentally lying like a slug on that beach, enjoying the peace and quiet and sunshine.

Love and light
Annie

Waiting...........

2011-08-19T14:32:00.000-05:00

Time for a sunset :)

2011-05-27T22:54:00.000-05:00

Yesssssssssss! The results were once again great :) 0.017%.

This has been an incredible five years, I have felt the full range of emotions along the way - pure terror all the way to the daily joy of seeing that Steven is doing so incredibly well despite cml in his life. I have learned so much, gained confidence enough to question those doctors even if and when they were intimidating; learned that no matter what, when a test result is due, patience is just not an attainable feeling for me. So many friends have enriched my life beyond measure....... some I got to know very well and all of you will always be a part of who I have become. The support and encouragement over these years has been truly priceless and I am incredibly thankful to everyone that helped me through the years since that horrible day of diagnosis.

I have also come to the conclusion that its time for me to move on, to leave cml treatment up to Steven and to step into a new phase of my life. Of course I will always keep an extra beady eye on Steven and cml and will no doubt still worry about his results, but its not the same as it was three years ago - or even last year. I feel safe enough to let go those reigns and keep watch from more of a distance. I am almost sure that not much will really be different, just that I need to find a new focus seeing that he is doing so well. Life is pretty much cml free apart from the PCR tests he has. How incredibly fortunate we are.

Now if something changes, you will hear the revving sounds from wherever you are! Then I will start my cml motors again and climb back into the battlefield. Lets hope that time never arrives. So now this blog will probably only be updated with his results and if there is any news regarding Steven's cml directly.

It's really been a wonderful, incredible, sad, lonely, happy, joyful and amazing five and a bit years that I have poured my heart and soul into.

The end of something is most often the beginning of something else....... a sunset is an assurance that the day is done, that I cannot go back and re do anything and it gives me the encouragement to make the most of as many tomorrows as I have.

May your tomorrow be the very best it can be......

love and light
Annie
Steven's mom

Thursday

2011-05-23T20:36:00.000-05:00

I just really, really need a good pcr result for Steven on Thursday..........

We forgot!

2011-05-18T22:22:00.000-05:00

Still waiting for those PCR results........ and the most amazing thing happened. We both forgot, totally forgot his doctors appointment on Tuesday!

It was quite something to find that I was smiling as I texted Steven to ask him about the appointment.... smiling! I never ever would have thought that I could ever have totally forgotten about an appointment to get those results, but to be able to laugh about it - wow.

Now I hope this does not happen again, and I definitely don't think its generally a good thing to forget a doctors appointment - but under the circumstances, I know that it brings a lot of peace with it - forgetting this time felt gooooood!

I know better than to become complacent, to pretend that there is nothing to worry about. I know that sometimes life just does not work out the way we want or need it too. And with this in mind, I want to ask you all to visit with Dori and her family. This family has shown such strength, such character and caring..... send them a message, a hug.

Life is so incredibly precious, so tenuous and worth living every single minute to the best of our ability. I often wonder how I would live tomorrow if I could see into my future. Maybe thats why we cannot see tomorrow. Just live today the best way possible, this moment is all we really have.

Love and light
Annie

Waiting with happiness

2011-05-10T23:06:00.000-05:00

The test is done and the waiting has begun. First, due to the tornadoes in the area, Steven had to postpone his pcr test by a week, but now its done and the wait is officially here.

And I am not worried. Maybe there is so much going on in my life that its just filled that 'cml worry' space for now, but I absolutely know that I really have no control over his results, so I am learning to ride that wave much more gently these days. Maybe. Hopefully.

Tonight was one of the best nights ever..... had both my girls here and am so extremely grateful for that. There really is so much good in the world. Sometimes we look at only what is in our face and forget to look at the other good stuff. Tonight is really good :)

And the wait for those pcr results will be as long as its going to be - no longer, no shorter, no matter what I do or think or feel.......

so for now I am just going to keep going one step at a time, relaxing and living life the best way possible with a huge smile and an enormous dollop of grateful.

love and light
Annie

And so its time again....

2011-04-20T07:34:00.000-05:00

It's time to see what Leukie the Dragon is up to again.... The PCR kit is ordered and winging its way this way, or soon will be, for that appointment later this month.

My mind has been otherwise occupied these past couple of months but as the time gets closer for that test, I find that cml nudges its way to the forefront of my brain. Steven looks and sounds great, but that does not stop this mama from really just wanting those test results to be in and great again.

Earlier this year I saw this as sidewalk art in San Diego and immediately thought that this is what its like in a way - Leukie the Dragon always lurking, leering at us from somewhere.....but I must say that this rendition of him makes me smile.

love and light
Annie

Be sweet.....

2011-03-28T18:41:00.001-05:00

And time goes by, everything on the leukemia front with Steven doing so much better..... its like someone threw oil on stormy water and ....... well, you get the picture.

Because my life was very tied into staying on top of, and in touch with everything leukemia, this leaves a fair sized hole in my mind. Even though Steven's tests have been great for a long time now and I have slowly spent much less time being 'freaky' for the past few years already, I still find that I really have to make a sincere effort to fill my mind, to stimulate my brain, to move forward and know that it will all work out exactly the way its meant to. I need to work hard at being creative, to enjoy things without the fear of that potentially 'coiled snake' waiting to turn my life upside down again.

So much of this past month I have thought of those who have lost someone they love.... To get up and move on has got to be so incredibly difficult. At times its got to seem easier just to sit and not cope at all, to not get on with life, to literally just stop. And that pain is endless. How does one do it? Especially those that have put their days and nights into a hands on situation of caring for someone, whose days were literally filled with that person. That adjustment must be huge. Beyond huge, as it covers every aspect of every day. I don't believe that anyone can prepare fore a person dying, you cannot prepared for that hole in your day, the loss and the extra time on your hands....... no matter how much you know its going to happen, or hope that it wont.

One blog that I read really got me thinking about all this... The 14 year old son passed away and from what it looks like, some family of mom are being critical of how she has dealt with his illness and how she still is. Wow..... that really is beyond understanding. She, and the rest of the family, are absolutely entitled to grieve in any way they want to without someone who has not walked their path, saying how they should.

So..... if you know anyone that has lost someone and is bending in the darkness, at a total loss about how to cope, or even dealing with it in a way you don't understand, please be kind to them, be sweet, fill a few minutes of their day with them, let them talk about the person that is no longer with them, ask them about the pain they felt and still feel. Just never ever tell them how to grieve, how to feel or how to act while they are coping with this pain.

And be thankful for the days that you do have with those you love. Always.

Love and light
Annie

Can it be 5 years already?

2011-03-06T20:59:00.000-05:00

5 years today we heard the words that would change all of our worlds in more ways than we could have imagined, then and now. Those words seemed to have challenged us..... I remember Steven saying to me in the hospital that 'everyone dies, I am going to try not die from this."

He has done so much more than just survive. He, together with Laura, have flourished and lived their lives more fully than I see in most young couples. Without Laura, I would not have been able to relax as much as I have over the years - even tonight she reassured me that she would 'report him' if she thought it necessary! What a lady :)

I am so incredibly proud of the young adults in this photograph... they are strong people, bound together by a love that wont break, bound by a goodness that is just beautiful. Steven and Laura, thank you for letting me into your cml world, being patient and understanding of my 'freakiness', especially in the early years. Lisa and Joleen - thanks for giving me the understanding to deal with it all while standing by and learning to deal with it yourselves. You have all given me the strength and love to keep on going......I love you all more than I can say.

5 years. So many lessons learned, so many people have come into my life. Too many have left, leaving huge gaps but in the big picture I think we have all grown in ways that are so good and so solid.

Now....... on to the next 55 years!

love and light

Annie

Almost five years later.......:)

2011-02-12T23:12:00.001-05:00

Have you ever sat and watched the most glorious sunrise or sunset....... one that makes you just sigh that deep sigh that plants a smile on your face and in your soul, makes your shoulders drop in utter relaxation and the smile lines around your eyes deepen?

Well, after feeling a bit like "Senor Frog" for a good while, we saw that sunrise....

Yes, Steven's results are in already. Last time that wonderful number was 0.025% on the international scale. This is a good number in relation to cml, its not a bad number at all in response to Gleevec and we were quite prepared to be at ease with things if he just hovered around at this number, or close.

But nooooo, not this time. This time it's.... enter beautiful sunset/sunrise, place the happy smile...drumroll please...... There are NO numbers, his counts are too low to report as a number :)
How flippen amazing is this!!??

This time Steven's counts were only listed as 'weak positive' on both the old scale and the new International Scale of reading the cml cells. This means that out of around a million of his cells that were tested, only a very few - yes, less than 10, came back with a sign of cml. This is as close to totally undetectable as one can come.

This is something we have all been hoping for, waiting for, for almost five years now. And yes, I am aware that they can bounce up again, and down again and go on like that driving me close to nuts as possible........ but for now - for now I smile deep inside and outside and the world is beautiful and life is just that extra bit better than best.

And with this news came a need to say a huge Thank You to so many that have endlessly held my hand, listened to my gripes and worries, felt my tensions and lived with my moods in the less than nice times. Although these past years since Steven was diagnosed have been difficult and scary, they have, in retrospect, not been terrible. Steven is alive and doing well, we are all getting on with our lives and we have all grown into better people because of the whole circumstance.

I know that I could not have got through these past five years without you. Yes you. And you and you too. Every one of you have been there for me, for Steven. With us. You have held me up, pushed me along, led me and walked with me along the road to where I am today. I think that if my cells were put under a microscope, there would be a little of each of you showing up in there, a part of what makes me whole and capable.

You come from all around the world with widely varying circumstances, but each with a good heart and a hand held out. Thank you. Thank you!

And so, with these wonderful results in hand, we head into the summer months of 2011 and year number six living with cml in one of us. What a wonderful way to close off these cold winter months and start a new year.

And just as a funny thought.... just a few years ago, I would have been absolutely offended at any part of any of my kids being described as "weak positive" and I would have been horrified at any test result with so many zero's... now I am soooooo happy! Funny how things change.....gotta love it. :)

I wish smooth sailing on the oceans of life for everyone.
Love and light
Annie

Looking for full sunshine again....

2011-02-09T22:31:00.000-05:00

Yup, its been a while since I last updated the blog.... Since we got back from the cruise, the weather has been really cold around here and a challenge to my state of mind...... oh for those lovely balmy days in the sunshine. As I write this, the world outside is gently being covered in a white blanket of snow, once again.

And so, I guess, it is like the seasons passing by - this waiting for the pcr test first and then that seemingly endless wait for the results. Yes, it has definitely become easier to deal with the time until those results come in, but its still a wait. Its still a time when that river runs in the back of my mind a little more loudly, when my concentration is a bit more lacking and my focus all over the place. It's not yet a settled time, its not a peaceful time nor will it ever be, I think.

But its a time that I have learned to treasure, to enjoy, as much as the days outside this wait time. I do see the beauty in the days, I find the fun, the joy, the sadness and the new experiences in these days as much as in the other. It's just a little bit different.

I have thought for a good while now that Steve's counts have something to do with his stress level.. These past couple of months, I believe, have been a whole lot less stressful for him and I am really inquisitive about these upcoming results. Wouldn't that be great if this really is the case and his counts go down. I know what that does to my heart, my soul and my ability to see life in more shades of joy.

It's been almost 5 years already since Steven's diagnosis and hard to believe that life has not only moved forward but improved in so many ways. Just the other day I was talking to a woman and in the conversation mentioned that Steven has leukemia. Well, her eyes immediately shot wide open, she glanced quickly at him (despite having spoken to him earlier), and whispered deeply in horror 'him???'. Steven was sitting not far away at all and I saw a small smile form at the edge of his mouth, as he carried on with what he was doing. I counted my blessings with a smile as I quickly told her to look at how well he looked and how well he has been responding to treatment and it was interesting to see how she relaxed and started asking questions..... it was not long before she started sharing her cancer story about her sister.

She had not been able to talk about it for a long time with anyone as everyone thought that she was 'over' the terrifying times she had gone through with her sister. Many people do not want to talk about cancer, they don't know how to talk about someone who has died from cancer and 'don't want to open wounds' by 'reminding' people of the tough times. Sometimes people are even reticent to ask me about Steven's results..... Don't be afraid to talk about cancer, don't be afraid it will hurt or remind someone of the pain. Cancer is something that once its in your life, in any way or family member - its there. No amount of talking about it will make it hurt more, but it sure might make it easier to deal with. Even though Steven is doing so very well on Gleevec and right now everything is going along very well with him, I absolutely appreciate it when someone asks about him..... I can only pretend to imagine how it must feel to someone who has lost someone to cancer..... Ask about them, talk about them, laugh and cry with the memories, care enough to take that sometimes scary and confusing step - talk about cancer and the people it changes - you can only help break the loneliness this disease brings with it.

So, even though we wait for the sunshine to break fully through those clouds with another set of great results, the view is still so good and beautiful and I am finding it easier to enjoy this time as the years go by.... This learning, this process of learning how to do things right, how to be there for people we don't even know, to just listen, to be, to just be everything we can be - what a process.

What a way to wait for wonderful results :)

Love and light
Annie

"Giving Anonymously" Appeal

2011-01-18T01:15:00.001-05:00

This organization is wonderful and the people that work there are amazing...... even if you cannot help them out with this, please check them out and pass the word along. There is often someone you want to help, but dont want your relationship cluttered up with financial issues.... use Giving Anonymously.

Annie

Uniquely precious......

2011-01-18T00:20:00.002-05:00

Last week it snowed a snow that our little town has not had in a long time - even more than the Christmas snow they had while we were away. I don't like the cold, so the 7 inches we got in the front yard, together with the really really cold temps, set my teeth on edge... and then I heard it. My camera was jumping up and down to get another shot at capturing a snowflake... and so we did.

A few days after that we left for our cruise from Ft Lauderdale, through the Panama Canal to San Diego and I honestly did not even think of cold weather, let alone snowflakes. (Apart from yours, Esther).

It was simply wonderful to be away, Steven was going to keep the shop for us, and he was and is doing very well still, as was everything else in our lives.... So I left with a clear and unleaden heart. At night, long after everyone had deserted the top deck, I would walk around up there in the crisp, clear night talking to myself and the ocean and enjoying the total lack of people and human sounds. The bows of the ship, Celebrity Constellation, parted the ocean waves almost effortlessly, creating a swishing, shooshing bow wave that soothed my soul even further. All of you were so often in my mind, especially during those lovely quiet walks and thoughts and wishes still swish around on those moonlit waters.

And then we came home again to reality in so many ways. Tyler passed away soon after we got home and Steven's pcr test is due again next week and the hurt from others that are no longer here was still evident in many different ways in the emails and catch ups I did.

And so the Snowflake came to mind again. That day I had a black piece of plastic lying outside to catch the snowflakes. You see, sometimes snow falls in these beautifully shaped, unique flakes but it seems to me that much of the time the snow is just..... well, clumps of uninteresting ice pieces. Sometimes they are little round balls, sometimes tiny toothpicks and sometimes a scrambled mess - almost indescribable..... but this day there were many perfect flakes floating down on our world.

I dont think that many people actually look at what type of snow is falling...so I called Steven outside to get a closer look too.... It's like being in a different world when you see all those flakes gently landing on that black plastic. Its quite incredible to think that something as beautiful and special as this snow flake was made and then survived the fall to earth to land right there at the tip of my lens. I find myself becoming totally involved in hunting the next beauty and I even forget to be cold at times.

If the temperature changes just a very little bit, that beautiful flake would not form at all. Just a degree or two makes a difference between the creation of something stunninly beautiful, or not. I dont know what the temperature it has to be to create this perfection, but I do know that when the tiniest thing changes, that flake stops being. Just stops. If I breath too close to it or if I stand in the way that shelters it from the wind, it disappears in the blink of an eye hardly even leaving a tiny puddle.

And this got me thinking on life and just how tenuous it really is. This leukemia, cml, is formed by something really small in the dna changing and messing up (no technical terms right now), just something so small creates all this mess in our lives. I wonder just how small the change was that started the ultimate undoing of Tyler and Adrian and ...so many others too.

I know that there probably is very little chance that we will be able to cure all cancer, or to stop it from getting out of control, and I know that sadly many many more people will not survive their cancers and other illnesses. And this thought, pictured together with that short lived snowflake, makes it so clear just how important it is to let those you love know it. Loud and clear. It makes it clear just how important it is to live our lives 100% every day, to look for the joy, the beauty and the love in as many moments as possible. All too soon something will change, or the change will tip us into something unstoppable where we cannot enjoy life as we now know it.

And like this snowflake that will now live forever as a photograph, the many people who are no longer with us, will keep living in our souls and in our memories as unforgettable and as beautiful as a once in a lifetime snowflake. Each one of them uniquely precious forever...

Go hug someone - tell them you love them. Call them, write them, txt or email them.

love and light
Annie

A very sad start to the new year.......

2011-01-07T22:20:00.002-05:00

Tyler passed away yesterday, the 6th January, 2011

This was not supposed to happen at all...... he was a handsome 44 years young, still newly married, by all accounts a really wonderful person; his wife Mandy is beautiful, vibrant and walked his walk right there with him. He was supposed to have a full and good life, he was supposed to beat this leukemia. He was supposed to live, dammit!

I have never met Tyler or Mandy but have followed their story since they first started their blog and because Tyler had the same leukemia as Steven, of course I wanted to find out as much as I could about how he, and also Mandy, dealt with the rocky roads. Obviously for all the right reasons, I wanted Tyler to beat his cancer, but in addition to that, I wanted his survival to to be a 'win' for us all against cml. I wanted him to beat it so that I could feel better, be more at ease and add to the hope I have for Steven's long life. Selfish, yes, but thats the way it is.

We had just returned back home from vacation when I read the news and it was literally like a kick in my stomach. I kept going back to their blog to make sure it was true - and that photo of them both, so full of life, love and happiness greeted me every time and made the world a bit brighter, until the words below came into focus.

Tyler obviously touched so many people in his life and was clearly loved by a bunch of people, and he will be tremendously missed. My heart breaks for all those who knew him and have now lost him. It just does not seem right at all.

It's at times like this that I get really really angry, sad, scared and angry again all rolled up into one ball. Obviously I don't feel the grief the same as those that knew and loved him, but his passing definitely has an effect on my life. It makes it a bit rockier, makes it a bit more precious, makes my life a bit poorer and at the same time it somehow enriches it. And right now I feel very selfish in describing how Tyler's dying affects my life in the face of their hurt, but its true. Even not knowing him at all, he has made an impact on my life and it has been a good impact.

I am deeply sorry that Tyler's life ended so soon and I send my deep and sincere condolences and love to Mandy and all his friends and family.

Tyler..... I hope you have that beautiful smile brightening your face and the twinkle in your eye lighting your way.

With love and deep sadness

Annie

Thoughts and thanks....

2010-12-16T23:33:00.001-05:00

As we head out on our first cruise.. so many thoughts fly through my head. Many of them literally fly through and are gone, or just dont come back when I want to write them down.... but here is one that has really got me thinking. The lady who wrote this latest blog http://www.caringbridge.org/visit/ryanpatrick, Amy, is mom to a wonderful boy Ryan who is no longer with them and she shares her feelings and thoughts. When you read this latest post of hers, go down to about halfway - well, read it all. But the part where she describes how she, and we all are, literally a heartbeat away from the other side is just beautiful. It puts a different perspective on a good many things for me, makes me think and wonder and brings peace too. Amy has a really lovely way of writing that makes one wonder how come you did not think that way yourself, she can take you from tears to understanding in just a paragraph...

Another thought........ Someone said something just the other day that got me thinking about how fortunate I am to have so many wonderful people in my life these days. Being mom to Steven, who is doing well and slaving hard in the shop while we are away, is pretty much like sitting on the sidelines, but getting the best of it all. So many people have come into my life since Steven's diagnosis, all of them enriching it in more way than I could have imagined. I have cried many times over the death of someone who tried hard to keep living, cried at the changes that those losses bring and grown with each and every step along the way.

My life is rich and full because of my friends, "my People" who enable me to be all I can be, who allow me into their lives, their worries, fears and tears, laughter and joys.

It sits on me heavily when somone I had been talking to or who's blog I had been following, dies. It really scares me but at the same time it helps me see the beauty in almost everything in life. It makes me appreciate and treasure everything so much more. I have become much more patient, much more understanding along this road ...... and I like it.

I am sure that I will still say the wrong thing at times to someone, offer the wrong advice, ask a question that is out of place or something, but this is so much better, this being able to at least talk to people going through these tough times, than being the way I was. I was scared to say anything - had no idea what was right or wrong to say or do. Now I know that sometimes a hug says it all.... sometimes even a stupid question or comment (sometimes!) is better than changing the subject away from their loss or ignoring it.

I can hear myself rambling on now, and I am becoming less clear by the minute about what I want to say...... so here it is in a nutshell........... To everyone who reads this blog, who emails me, who has welcomed me into their lives through some or other battle with illness..... THANK YOU! I treasure each and every one of you more than you know.... from those who were there right after diagnosis, on the boards and holding my hand for me, to those who share their wonderful happenings these days with almost no hint of cml.... thank you, you have done so much for me - even though I am "on the sidelines"..

Here's wishing each one of you the smell of a rose, the joy of a belly laugh, the feel of a full tummy and the ability to reach out and hug someone..... and may the new year bring you all a huge dollop of love, laughter and peace.

love and light
Annie

Christmas and things......

2010-12-07T23:14:00.003-05:00

These past couple of weeks I have been thinking about what to write about, how to write about CML when, frankly, Steven is doing so very well. His last results were much better than I hoped for and he seems to be moving on with his life despite everything cml related. I get to see him almost every day these days, and I think this has tempered my 'worry gene' and I can clearly see that I can let it go a little bit more. Not totally, but a little bit more.

I don't believe that I will ever not worry about this disease in Steven. I don't believe that I will ever become totally at ease, nor will I believe that there is no chance that it could all go bad..... But I am not going to waste the days, weeks, years we have on worry... I am not going to pull that cloud of worry over my head when I could rather enjoy the sunshine while its here.. If it rains, if Steven's cml wakes up and wants to create more horrible days and worries, well then we will deal with it. If it happens. But for now. Its not.

Everything seems to be going along really well. And, as I do in my job, which is fixing and building computers, I try always to acknowledge that I really don't have the power over much at all. I fix a computer and it *should* work well for a long time; I say that we *should or might* be able to finish the job in one day; I say that the antivirus program *should* pick up most of the viruses. I have learned not to be absolutely sure about something I have no control over.

Today I was reminded again about something that has become important to me..... Christmas Trees. They are indeed a lot of work, they take a good while to put up, to make them just right, decorate with balance and care, the placing of the lights just right and the star on top.... all of it - it takes time. But its all for only a little while -maybe two weeks, right? Like I used to do, some gripe about the job of putting up that tree - the time it takes and all.

Today I spoke to Lottie who is away from home during a drug trial for a new drug that sounds incredibly promising for cml-ers. She and her husband don't know when they will be home again - they have been away a month already.... She told me of a 12 year old at MD Anderson Hospital who now has AML for the third time! Yup - third time. Not sure whether she will be home for Christmas either. Then there is Tyler and Mandy who are going to be back and forth between hospital and home during the Christmas week. These are just three people that I can think of right now.... Three families that will not be putting up a Christmas tree with the peace we can because, well, they are not home to do so because of cancer, and stuff totally out of their control. There are thousands of families like these.... thousands....

So here's my challenge to you ........ put up your Christmas Tree with someone else in mind. Hang a good number of the baubles, pieces of tinsel, decorations and many light with the thought of someone who would give anything to be able to do just that. And then hang the rest with thankfulness that you can do exactly what you are doing.

And then when cleanup time comes, the time when the prettiness goes away and its time to 'get back to normal' and a new year, send a thought out there to those who can not do that..... to those who no longer have 'normal' in their lives. And be grateful that you can do that - because that means that you have at least some 'normal' in your life.

I remember so well when Steven was first diagnosed..... everything remotely normal disappeared. People spoke quietly around me, normal gripes and complaints were no longer shared with me, jokes were kept far away - oh I missed normal SO badly - life even smelled different! So, be 'normal' around someone who is having a rough time this Christmas.... I know its difficult to know what to do, how to act, what to say.... but just be you. It will help.

One of the sad things about cancer is that everything does change with a diagnosis - the world gets a different hue, taste and feel. The ground feels unstable and its easy to get lost. We are extremely lucky that Steven is doing well, that he is with us still. It could so easily have been so different. I could be in that horrible new world of moms who have lost their children. Two wonderful ladies that I know no longer have their sons to hug and nothing can make it right for them. Before Steven's diagnosis, I never really thought much about losing a child of mine, but the loss of both Adrian and Nick from the same disease that Steven has, has kept me in a mode of deep thankfulness, as well as a state of humbleness. And hope.

And with that in mind, I am going to post this link again...... the National CML Society. A bit about who they are : The National CML Society was created by and for patients and their families in order to provide a centralized hub of information for this rare form of leukemia.

Founded in 2007 as Carolyn's Hope, this organization quickly spread beyond the confines of a local work to address the real concerns faced by the CML community nationwide. In December 2009, the organization became The National CML Society (NCMLS), serving the needs of the CML community in the United States and its Territories.

This Society, and Greg, is doing an incredible job and have some really fantastic information and links on their site. Here is a link to some of the video's they have posted - real people living with cml... When I watched them again the other night I found myself bawling when Erin was describing how right after her diagnosis, she went to a public phone and called her mom, saying the word 'leukemia' for the first time... It still makes me want to choke up.

And here is another blog, PatientPower, that is so filled with information of all sorts about all sorts of cancers and health issues. I have been meaning to go to Andrew's blog for a long time now, but only just got around to it today - and I got lost in all the really interesting information..

All this really makes it clear that none of us are alone in this at all.....

So...... with a huge dose of thankfulness for everything and everyone in my life, I wish you all a wonder filled Christmas Season. I hope you find some peace, a smile, a laugh and the love thats out there.

Love and light

Annie

The beautiful dance...

2010-11-16T22:46:00.002-05:00

When looking for photos to go on this blog, I found myself looking for something like dancing, the sky, happy..... and then I found this one I took of the dancing lights, Aurora Boreallis, in 2006 in Northern Canada. I remember so well the feeling of incredible awe, of smallness and utter joy and peace, all rolled into one huge and wonderful feeling..... and it fits so well when seeing Steven's results this time - 0.025% on the International Scale. :)

There is a chart to the right of this writing that gives his other readings, and after looking at these a good many times over the past few days, I realize that I will just have to get used to the bouncing around... There is almost a pattern in that itself.

I am very interested to see the next one - this because I think I have seen a pattern in Steven's results..... when he is more stressed, the pcr is higher. I have no hard and fast proof of this, because of course stress changes by the hour sometimes - but generally I think I see something there. I will be watching.

The past month has been very sad with the loss of David Cox and also Ryan Patrick. Without 'claiming' either of these people, it feels as if I have lost a little bit of something at these losses. I know that life includes dying right along with living, the happy and sad and all that..... but those thoughts don't help when it smacks one in the face. It just sucks that two more people are no longer here and that there are a whole bunch more people grieving for them.

It makes me even more grateful for everything I have in life....... every little thing, no matter what it is.

I really am one very lucky mom...... its getting hard to update the blog! This means, of course, that Steven is doing well, that my mind is not even closely centered on cml on an hour to hour basis... And this makes me smile.

Today I looked at Steven while he was busy doing something, and I wondered when it changed. When had I started just seeing Steven without the RobotCop Scan going, without trying to see beneath his skin and count the leukemia cells one by one, without looking at him with that thin cml barrier between us?

It was wonderful..... it was not long ago at all that I never thought that would be possible..... but here I am today and its yet another new truth. Obviously cml is still an issue, but thats just it - it's a well controlled issue that is in a really good place and not by far any more even a big chunk of my kid!

Today was another really great day.

love and light
Annie

27 years......

2010-10-17T21:44:00.001-05:00

Twenty seven years ago today was a totally magical, amazing day for me. It was an experience like none other and the special-ness of that day has not diminished at all, if anything, its grown.

Today was Steven's 27th birthday and as I looked at my three children together, celebrating not only his birthday, but Laura's last week and Frank's next week, I realized again how incredibly fortunate and blessed I am to be mom to these really lovely people.

I have loved being their mom every single day - even those days that I just wanted to fly away for a few hours.... :)

Steven, your birth was the most incredible thing that had ever happened to me. I looked at your little face and absolutely fell in love. You looked a bit like a combination of ET and my dad, were so sweet and perfect and soon you got your own look and left ET far behind. You quickly and easily grew into a happy little boy, through the relatively easy teen years and into the wonderful man you now are. There has not been a day that I have not been proud of you, not a day that I have not felt incredibly fortunate to have the privilege of having you as my son.

Happy birthday, Steven, I love you.

Totally off topic........ but....

2010-10-16T15:39:00.000-05:00

Totally amazing!

Homemade Spacecraft from Luke Geissbuhler on Vimeo.

The National CML Society

2010-10-11T22:56:00.005-05:00

Every now and again, one finds a story..... a story that stands out above many others. And so here is my new favorite one..... The National CML Society. This CML 'thing' is a long long road, sometimes with huge mountains and howling winds, but its definitely made easier by people like Greg.

This organization is one of the reasons that I can sit back on my duff and not be a freaky mama.... It's helping keep me informed of many aspects of CML of the latest treatments and information......all in one easy to find, read and understand, place.

A huge thank you to Greg and his family who started this all and to all that have got this up and running. So, here it is, in Greg's own words.........

Here's our story and how the NCMLS (a.k.a. Carolyn's Hope) came into existence.

In late December of 2004, our family was shocked to learn that my mom, Carolyn, had been diagnosed with breast cancer. This diagnosis came on Monday, December 27th during a follow-up appointment to review recent mammography and biopsy reports. Needless to say, it floored us. With the New Year's holiday only hours away, she was instructed to return on January 4th for surgery. Over the long weekend, we began to realize that our resolution for 2005 was to beat cancer. Little did we know that the following Tuesday, a CML diagnosis would come.

Following a radical, double mastectomy and chemo, she began taking Gleevec (800mg). Over the Gleevec journey she experienced severe side effects and was unable to achieve a cytogenetic response. Yes, folks, contrary to what some may say it DOES happen. Over the next 18 months she continued, diligently to take varying dosages of Gleevec to no avail. Sprycel was on the forefront and soon to be out of trial so the plan was to get into the trial and/or begin as soon as it was FDA approved. In October of 2006, she was still in chronic phase with still having a sub-optimal response. The plan was to begin Dasatinib at the next appointment in early January.

Christmas 2006 came with all its glory. Christmases in the Stephens' home were magical. Mom was the perfect hostess and everything ran so smoothly (she accomplished this ALL while working full time as a Human Resources executive for a large national company). The day after Christmas, she ran by her general practitioner's office for an unrelated matter. He asked some general questions and something caused him to do some quick blood work. It was then that she discovered that she had gone into blast. I remember the phone ringing and her saying "I'm in blast".

She was admitted later that day and the BMA revealed a 69% blast ratio. She immediately began Sprycel which returned her to chronic phase within days. Unfortunately, at the 10 week mark, the drug failed. At that point she entered the AMN 107 trial in Houston. Again, the drug returned her to chronic phase but it was short lived.

On July 28th, 2007 at 4:32 p.m central time, with my brother holding her left hand, I holding her right, and my dad stroking her forehead, Carolyn M. Stephens, wife, mother, Mema, and friend, died of CML. She had worked the previous week, enjoyed a birthday party for my nephew, and unknowingly lived her last days surrounded by those she loved most.

On August 3rd, only two days following her funeral, I knew that our journey was not over. You see, the journey never ends for a CML family, regardless of what happens. I am living a CML journey today because CML has forever impacted my life, the life of my family and our friends.

I, along with my father and brother, decided then and there that we would do all we could to ensure that others facing a CML journey had the information, access to specialists, ability to connect with others, and resources to help with the huge financial drain a CML diagnosis can bring about. Thus Carolyn's Hope was born. The organization was dedicated to her memory and we honestly thought we would simply talk with a couple of local families and help where we could. As time passed, two families, became four, four became 20, 20 became many, many more.

Over the past three years, I have witnessed this small work blossom into a beautiful thing that is bigger than any one person.

As we continued to grow, we realized the need to rebrand so that others facing the journey could readily find us. After talking with our board, medical advisors, and patient advisors, it was decided that we would take on a name that would better identify the work. As you know, another organization in Canada was already named The CML Society (of Canada). At that time, I approached Cheryl Anne Simoneau to ask if the organization would oppose Carolyn's Hope adopting the name "The National CML Society". After their board met, they graciously agreed and the decision was made to rename Carolyn's Hope.

The work is NOT a part of the CML Society of Canada, nor or we a subsidiary. We DO talk with the CMLSC often and have attended many of the same events, as have others on this site. The NCMLS a.k.a. Carolyn's Hope is a completely separate entity with a different charter, different leadership, and different yet similar services.

Today, The National CML Society a.k.a. Carolyn's Hope, is a rapidly growing organization dedicated to the ground based issues faced by those living with CML. They are as varied as dealing with side effects, to finding lodging in a strange city. We have quite a few new and unique services that are about to be made public. These services are unlike any available in the CML community today. It is our prayer that anyone facing a CML diagnosis will benefit from
these services.

I don't know your spiritual beliefs, but I can stand boldly today and say that God has directed this work and has opened doors beyond imagination.

We work with, and collaborate with a variety of organizations. That list includes;
the Lance Armstrong Foundation;
the I'm Too Young for This Foundation;
the International CML Foundation;
the Max Foundation;
the CML Society of Canada;
the Leukemia and Lymphoma Society (of which we are a referral agency – we aren't funded by them either);
Navigating Cancer, and others.

I choose to devote my time and energy solely to helping where I can, standing in the gap for those in need, and joining arm in arm as we ALL continue the journey that may one day lead to a cure.

My heart and priorities are in order and my family and I wish to contribute in whatever way we can. This is about LIVING with CML and living life ABUNDANTLY.

Our medical advisors are:
Dr. Michael Mauro, OHSU, Portland Oregon;
Dr. Jorge Cortes, M.D. Anderson, Houston, Texas;
Dr. Moshe Talpaz, Univ of Michigan Ann Arbor; and
Dr. Neil Shah, Univ of California, San Francisco.

Our Patient Advisors are:
Barb Stanley, Arizona
Beth Hodges, Georgia
Cindy Langley, North Carolina
Glenn Davis, Michigan
Jerry Mayfield, Illinois; and
Lee Spiva, Florida.

Over the course of the next few weeks you will see many changes. ALL of which have originated within Carolyn's Hope/The National CML Society.

We invite you to stay tuned. Please do not hesitate to contact me if I may answer any questions or if you'd just like to say hello.

My best to EACH and EVERY one of you!

Here for a Purpose!
Greg Stephens

Executive Director; Founder
http://www.nationalcmlsociety.org/
31 Inverness Plaza #307
Birmingham, Alabama 35242
877-431-2573
gstephens@nationalcmlsociety.org

a thought....

2010-09-20T22:12:00.001-05:00

does the person create the journey - or does the journey create the person

Cruising on with life........

2010-09-19T22:38:00.001-05:00

And so those intense feelings were pushed into the back of my mind again, becoming the rocks in that ever flowing stream that tinkles in the back of my mind and I am able to think and plan the good things in life again.

About a week ago, Steven and Laura came around for dinner and they both came in the door fuming.... I mean FUMING! Uh oh........ They had gone to pick up Steven's Gleevec from the Walgreens down the road.... He has a standing, automatic prescription reorder with them which should ensure that his meds get there on time. Well, that did not happen and it lit fuses in both Laura and Steven. Steven had tried to pick his Gleevec up earlier before to ensure that there would not be days that he does not have any, but the pharmacy said they could not allow that because of the type of medication Gleevec is. So he has had to go on the last day of his current supply or the day that he has run out........ this leaves it wide open to issues like this. The chappie at the pharmacy also did not have the right attitude and after both Steven and Laura telling him how absolutely important it is that he takes his cancer meds..... the guy shrugged his shoulder and said that it 'should be' in the next day.

Laura immediately had the prescription transferred and they were able to pick up the Gleevec the next evening from the new place. The old pharmacy only got it in by Friday which was five days after it should have been there!! This really made me angry and although I know that its important not to miss a day of Gleevec, its not absolutely critical in Steven's case - but it could be for someone else, it could even change things with Steven. Who knows......

The best thing that came out of this experience? Seeing just how angry Steven and Laura were about it - how upset, angry and concerned...... I have to admit that that was pure music to my ears. :) It just totally confirmed for me what I have known all along - they are both very serious about dealing with cml in a very serious and vigilant manner. Just lovely.

Apart from that, well, for me even including that experience everything has been very quiet and peaceful for the past weeks. This blog calls at me from the recesses of my mind but nothing big enough to sit down and write, not until they kind of pile up a little. Lea mentioned the other day that when my three 'kids' are doing well, then I start dreaming of a vacation again and when they are a little unsettled in whatever part of their lives, well then the travel bug goes into hibernation..... So, yes, we have another vacation planned!

This time we are heading out from Ft Lauderdale on a Cruise through the Panama Canal to San Diego where a very special friend of mine lives. Hi Esther :) We have a few days before and after the cruise to visit and explore in both Ft Lauderdale and San Diego. Its going to be absolutely fantastic to sit on the balcony and watch the ocean for days on end and also to see a good many new places.

And coupled with that is yet another piece of good news..... Steven will be hanging around the shop a whole lot more in the very near future as he has decided to go back to college next semester.. So he will learn what he can from us about computers and then get back to the books for a while..... This means that while we are away, we will not have to close the shop down as we normally do. We know that he can handle being there on his own and that will probably help him a ton, to be there without our being there. All good.

Just a few days ago, the subject of having a favorite child came up. I know all us mom's deny having one of those, and even if we did favor one kid above the others, hell would freeze over before we come anywhere close to admitting it. But it got me thinking...... do I have a favored child? Well, yes. Yes I do. It's whichever one is dealing with life by being fair, being all they can be, being honest good citizens and looking out for the others in their life..... And thats all three of them! I have three favorite kids!! Now that being said, and having to be honest in writing this, seeing as I opened the subject, I have to say that I am more concerned with Steven. Or is that 'for' Steven, or "about" Steven. I don't know, but what I do know is that this cml has tied me a bit tighter to him than my girls.

If either Joleen or Lisa mention and problem - yes, even like a toothache! - I can give advice or sympathize with them with a clear heart and mind. If Steven mentions the same situation, well then I wonder a bit more deeply, I tend to go around in my mind wondering if its something tied to cml and not just the normal run of the mill toothache or whatever and then yes, I am a bit more gentle, more concerned, more wrapped up in whatever is going on with him, and I check back with him more often than I would with the girls. It makes me a little more nuts. And so at times this is construed as Steven being my 'favored child'. Is this what it means? I don't want a favorite child - I already have three!

When the kids were small my favorite kid would be the one that was not creating havoc at that very moment, and for a good many years, that changed by the minute.... This is something else entirely I think. This 'favoritism' is in a sphere all of its own and I think its unfair to be critical of a mom who feels this way. I often think of the mom's who have lost children and how many people then advise them about how much the other children need them.... As if that mom would not know, as if she was not doing her best...... Sometimes being tied tighter to one child than the other brings a whole new dimension to life......an unwanted one, especially in really tough times.

To end this on a more gentle note, some beauty and a good sign - I have my camera going again :)
love, light and laughter.
Annie

Long overdue PCR update

2010-08-24T21:23:00.000-05:00

For a good many different reasons, I have just not had the oomph to write anything on here, not even the latest pcr results. I think disappointment was the main factor, a touch of being angry, some...... no, a lot of frustration and just general tiredness.

For a while now the pcr had been cruising around the same level, then it did that beautiful downward dip....... and then these latest results. The latest reading is 0.10% on the International Scale. And then I looked again at the past results and see that I had been way too complacent....... I misread the April reading - it should be 0.040% IS, not the 0.015% as I had listed. That was on the old scale....

So when I had thought that there were two jumps downwards towards PCRU, instead there was one lovely jump down and then the little hop upwards again in April......... followed by this jump even further upwards. I know - it puts Steven at around the same as he was a year ago, but ooooooooooooh, I had such high hopes that he was on his way to that string of solid zero's.

So now we wait again until the next test and see which direction that goes in. Hopefully it settles down, or even goes down. Oh I know this is nothing dramatic, probably just a normal bouncing around as these pcr's do and that there are people who are in a much much worse place, but still. This last result was like a kick in the gut and I battled to process it in a reasonable way. I didn't go nuts, didn't bite my nails but this time that jump got me on a level that just made me tired, made me really quiet on a deeper level than for a long time. Strange.

Maybe it was also a combination of remembering two very special young men. Nick left this world just over a year ago now...... He was a beautiful young man about Steven's age, just starting out in life. And Adrian, also around Steven's age - two years already! It hardly seems possible and it is definitely not fair - not in either of these cases or the many many others that this happens to. Both these young men and their moms had such a positive influence on my life and still do in so many ways..

Sometimes I get really scared...... yes, we can say that we are all going to die one day, that some or other mad bus driver will drive over us or someone else we love...... but it is also true that Steven has an extra 'strike' against him..... that he is a tad more vulnerable than the average Joe with just the bus driver to worry about.... and this scares me into a less bright place sometimes. I know that I am so fortunate to still have Steven here and that, even with this pcr jump, he is in a good place with his cml.... so how can I worry still? Why?

Love and light
Annie

Something wonderful.....

2010-08-02T21:26:00.000-05:00

A few months ago I started noticing this organization and did some reading up on them. What a wonderful idea! Click on the picture to go to their site and see for yourself, but I am going to tell you a little bit about them anyway.

This is an idea that I seriously wish I had thought of first - one that makes me smile every time I think of them or see their name. What do they do? You know how sometimes you want to help someone out but you know that its going to mess with your friendship or relationship or just the ease you have with each other, if you try to give them some financial help? Well, this company will send that money to them and not let on that its you that sent it. Yes........ Giving Anonymously! And when the person gets their gift, they are given a phone number to call where they can thank you (still anonymous) and let you know that they have received your gift.

I have read their website and the news reports and all and they sound like an incredible group of people! In a world half crazy, I think this is one of the nicest things I have read about in a very long time..

So - click on the picture above, go and read all about it and if you know anyone that can do with a lovely surprise - go for it! And then spread the word..... let others know how they can make a difference in a lovely way and make someone else smile a bit longer.

Here is some of what they stand for:

The Passion

Our goal is to enable and encourage you to be your own charity, and for you to give anonymously to those around you in need.

Sure, you could give money to us and expect us to find those in need. But then your neighbor who lost his job and now can't pay the bills or adequately feed his family, will not be helped.

Our Motto: We are not the 'charity' you are! Look around your community, your neighbors, friends and family. Do you see anyone in need? If so, give to them. You can give anonymously. We'll send them a check, and you'll get an email with a voice file of them thanking you. But they won't know who you are! How cool is this!

Go and visit the site and pass the passion forward - start something :)

Love and light

Annie

Needed - a big strong tree!

2010-08-01T22:34:00.001-05:00

I feel that things are going so well with Steven that keeping this blog updated is almost......... well, pointless. But then I have recently read a few blogs that were 'closed' and within a short period of time - boom - everything gets turned upside down and more than enough reason is suddenly back to start up the blog full time. So........ no shut downs happening with this blog! Besides, I have so much stuff whirring through my mind and especially this last month, I have had trouble trying to sort through it, the importance of my thoughts and the need to even write it down. But I know me - in order to help me deal with it - I need to write it down. Get it out.

So here are some of the things that have been swirling between my ears and around my heart........Firstly, the blogs of two people I had been following and had not looked at for a good long time because they were doing great - well, now they are back again. Oh how I HATE that! Just how does one go through all that again.... Both these people had a transplant and now they know what is ahead of them in dealing with this all. Again.

I recently read the entire blog of a lady who was diagnosed just over a year ago..... when I got half way through her blog, I had to go back and check to see just when she was diagnosed as so much has gone wrong, so many different things thrown in her path of recovery.... it was like a never ending nightmare..... Just a year, with so much she has to deal with - and its not nearly over either!

And then something on tv caught my attention - the number of people who die per day in car wrecks, from cancer and then the grand total... Did you know that 116 people die from car wrecks each and every day!! Thats 116 families that are devastated per day - at the very least.... 116 people that will be missed, cried over, who's death will leave a never ending hole in so many lives - per day. And almost every one of those deaths was born from a conscious decision of someone in the chain of events.... whether it was to drive too fast, too tired, too drunk, too angry, texting, talking, crying and much more........ 5 deaths per minute. And tomorrow it starts all over again.

So I started looking, yeah yeah, I did...... I started looking at the number of people who get diagnosed with cancer and the numbers that die from it. And thats where I stopped. That number was too big and there was no way that I was going to go too far down that road. A couple of nights ago there was a fascinating program on tv about "Toxic Towns" - boy did that get my blood boiling right before bedtime! It was about the towns living on the sidelines of big companies that have toxic waste in various forms. Of course all the companies state categorically that there is no way that their toxins have any effect on anyone..... one company even said that even though they did have leaks of toxic gasses into the air - none of it crosses the fence line! WHAT??

And so I have had a few days that have been a tad 'low'.... I have found myself quiet, too quiet and sad. Sad, but also seeing that despite all of this negativity, despite all the devastation - there are people working so hard to help, to make things better, easier, nicer and giving more hope for dealing with cancers. I found the video below on the blog of someone else who is doing well - I see that it was first posted just over a year ago, but its fascinating! A positive - a big positive. Read the comments below it too... they are great.

Is all this because its PCR test time again? Sheesh, I hope not! I want to be over all this worry. I want to know deeeeep in my bones that Stevens test results will only get better, I want to know that we will not be in that crowd of people dealing with those horrible, awful re-diagnosis days. And I thought I had it down pat. No nail-biting. Yes, I did notice the kit in the refrigerator, I did feel the hours creeping by as test day came closer and when I got the email that confirmed that my eldest child's blood was in the lab in Oregon, I sent a huge truck load of fairy dust that way in the hope of another great test result. Sigh.

I know that I have nothing to moan and groan about....... I know that, especially in light of all the people I read about that really do have reason to moan and groan and be seriously ticked off at cancer and the hand they are being dealt. But if this is how I get when its not even me with the cancer, I cannot begin to imagine how it must be to have cancer and then have to deal with the wait and the frustration and everything else too.

And Steven's doctor........ Dr S. I have hesitated at writing about this because I find it so .......well, incredible. On Steven's previous visit, Dr S wanted Steven to change labs - to have his PCR done at a local lab, one that does not do the test on the International Scale. When Steven asked why - the answer was "so that the results can be more easily understood/read", or very similar words. Steven said that no, he would just keep doing it the way its being done - sent off to OHSU, which we have been doing for about two years now and which is the way I like/want and organized it to be. Doc S then asked whether Steven was not old enough to make up his own mind and not just do as I (me, mom, Annie) wanted it to be done! Is this just us or is this not incredibly insulting, demeaning, distasteful and a host of other things?

I really am not sure what to do about this - if anything.... Steven says he will wait and see what happens at his next appointment in a couple of weeks time, and we will go from there, but that the test will keep going to OHSU. But now we know - if the pcr even starts heading upwards, a new doc will be found. And yes, I am already looking. This is just not good enough!. Steven knows without a doubt that I will only recommend the very best way to do anything relating to his treatment...... why is it so hard to find a doctor who would take the same care of my son?? Where are they all?

And so.... this is why the Strong Umbrella Tree picture of today..... I feel like sitting under that tree, protected from the worst of everything (as well as bird droppings!) and just being allowed to contemplate all the good things, the good people in life, and all the good and stable results coming back to many people as well

Here is that video by Daniel Kraft of a new technique for getting bone marrow donation.....I am in awe of people to work so hard to make things better.

Love and light
Annie
ps - my Netflix queue has been updated to only good, happy and funny movies for the next month!

A Donor's Story

2010-07-25T21:21:00.001-05:00

In my opinion, anyone who becomes a marrow Donor is an awesome person. These are people who give of themselves and purposely, with thought and intent, make a huge effort to save someones life. Jenny became her sister's donor and has since opened a website to encourage people in their cancer journey and also to try to get more people to sign up on the marrow registry.... Please go and visit her site (here) and talk to someone about joining today.. What an experience it must be to save a life!

Thanks, Jenny, for what you did - your story inspires and gives hope to so many! And thanks for doing even more and spreading the word about becoming a donor - who knows, maybe one day your work will be the link to another life saved!

Here is Jenny's story..........

My name is Jenny Motta and I used to believe that if you had the will to live then you would, but now I know the reality... The reality is there are thousands of people with the best will to live that are dying. The people I'm referring to need a Bone Marrow/Stem Cell Transplant, without one, they will die.

What if I told you that you could be their only chance at life? And you wouldn't have to give up anything that your body wouldn't make back naturally. Sounds too good to be true? Well it is true, ya see I'm speaking from experience. I literally saved someone with cancers life, and I didn't have to give up an organ or a piece of bone, or anything else my body would ever need again.

It seems these days that everyone knows, or has known someone with cancer or another type of life threatening disease... We may not have found the cure for all of them yet, but we have found the cure for 80 different diseases, and that is a Bone Marrow/Stem Cell Transplant.

This Is My Story

Nine years ago my younger sister was diagnosed with Chronic Melogenous Leukemia. Three weeks later we found out that I was what the doctors called a perfect match. We flew from Alaska to Seattle to the Fred Hutchinson Cancer Care Alliance. I went through some basic test to make sure I was healthy enough to be a donor. The doctors then gave me the option to donate stem cells or bone marrow. These are basically the same thing (blood cells) the difference is how they extract the cells from your body.

They explained to me that the Stem Cell Transplant which is also called peripheral donation is done by a procedure called apheresis. With this procedure the doctors would give me (the donor) one shot a day of growth hormones for four to five days, this is so the donated stem cells are easily accessible from my veins. Then the doctors would insert a needle in both arms. They take the cells out of one arm and run it through a machine that filters out only the cells that the patient will need, then they return the unneeded cells back to me (donor) in the other arm.

The second option they gave me was a Bone Marrow Transplant. For this procedure they would put me under anesthesia and go through the back side of my pelvis (my lower back) with a needle to get out the needed bone marrow (the blood cells in my pelvis) I feel the name of this is procedure can be very deceiving. I need to make it clear they do not take bone, only blood cells. I should also note that I don't know if every donor will have the option for which procedure they will donate. I personally don't care much for needles so I chose to go with the Bone Marrow Transplant and be put under anesthesia. The procedure took about two hours, they extracted two units of marrow. I was sore for about two weeks, not that bad. Not bad at all considering that the small amount of effort I went through saved someone's life.

July 18, 2010 was the nine year mark since I saved my sisters life. I would do it again in a heart beat for anyone. Reading this you may think the thought of being chosen as a donor would be a scary thing to go through. Well to that I say, "it's no walk in the park," but please take a moment to think about what it would feel like to have a doctor tell you that you would die unless someone else was willing to donate to you. Every day thousands of people all around the world are faced with just that.

One last thing I would like to make clear, just because you register to donate (which is only four swabs from the inside of your cheeks, and the packet is mailed to your home) doesn't mean that you will donate. It only means that you are put in data base with millions of other people that are willing to donate .

Please register to donate.

Un-setting my heart.....

2010-06-20T22:12:00.006-05:00

During the last week that we were in Costa Rica, Laura emailed me Steven's latest PCR results.... what a darling that young lady is! Obviously my first reaction was absolute joy, and this lasted a good many hours. But in the quiet of that night and the next few days I realized that I had been moving away from cml, moving away from reading the support groups and getting almost reticent in keeping up with it all, and this was for a good while before we left on our vacation (which was really great!)

Its so easy to move away from it all when Steven is doing so incredibly well. Its easy to become complacent and let life go by and some would say that that is not a good thing.... but it really worked for me! I love having the extra space in my mind and heart, I love feeling creative and not thinking about cml for days on end, I love the feeling of freedom.

And then there comes the 'guilt' again, the guilt for not being involved, for not participating, for taking that step backwards. This lasted until a really amazing lady put me straight in a beautiful and lovely way - that is a letter I will treasure forever :) Thanks!

It's ok to fill your life with other things, its ok to take that step back and its even necessary and healthy to be slightly, and more, removed from something like a cancer diagnosis, treatment and all, at times. It's allowed me to be whole again - and yes, I know it's not me with cancer, but it really has affected us all deeply. Stepping back for awhile has allowed me to grow again, get stronger, to just be, to kick back and really enjoy the other things going on around me.

I am not suggesting that anyone remove themselves from their situation - just that for me, it was wonderful to take a break from it all, to let things float when all is going well, to put cml on the back burner for a while.

Yesterday I read something that really resonated with me and really does describe what has happened to me since Steven's cml diagnosis. It was said in relation to a guy having cancer and how he is dealing with it...... here it is:

"It's not a weight on my shoulders anymore, but like an engine on my back."

These words have been winging their way through my mind all day long, bringing a smile to my face. I realize that since that first horrible, awful, terrible, frightening day, not only have I been terrified, but I have had this engine on my back pushing me past limits I had before. Limits of learning, limits of friendships, to understanding and limits of accepting things.... What an engine that has been! That engine has brought me peace and friends that I never imagined, it's brought happiness, depth and love beyond what I could have dreamed.

And another set of words sent to me also resonated deeply:

Un-setting your heart means letting go of your picture of how you want it all to be. It means letting go of trying to control things over which you have no control. One of the prime causes of our suffering is our wanting things to be different than they are. Yes, we all want a peaceful world instead of a world filled with weapons of mass destruction.
Yes, we all want health instead of illness. Yes, we all want healthy, happy children instead of children who break our hearts. But sometimes life doesn't hand us what we want. And when we un-set our hearts from our needing it all to be a certain way, we can breathe a sigh of relief and open the door to a more powerful way of living.

And so I think this is what has happened now ..... my heart got un-set. And now I can embrace the cml back again into my life with no frilly edges, deeper understanding and yes, a more powerful way of living. I know that this can, and probably will all change if anything changes with Steven, but hey, for now I am really enjoying it.

And............. we found ourselves another little girl. Maddie cannot ever replace Sophie, who left a huge hole in our hearts and life, but she definitely makes it much easier and she and Allie are like little whirlwinds of fur playing much of the day. She is like a little "Mini-me" to Allie, a cuddle pup and she listens sooo well to my ramblings late at night :)

Love and light

Annie

Pura Vida :)

2010-05-15T20:36:00.000-05:00

Of all the things we are seeing in Costa Rica, the very very best were a few little numbers in a message Laura sent me this evening........ yes! Steven's PCR results! 0.015% !!! Thats even lower than last time and I had already made sure that I was prepared to hear that the results this time were going to be higher. But lower?!?!? Whooo hooo!

I would pass up everything, even this little green froglet that jumped off my hand straight onto my mouth, a kiss? - just to see results like this - but I get both! How awesome is that!

Steven and Laura - I am so proud of you two, so proud of how you take this disease seriously, but dont let it take control over your life. And I am so happy about these results - a huge thank you for emailing them to me!

Also - congratulations on your first wedding anniversary, Steven and Laura - wow- time really does fly!

Here in Costa Rica they have a saying "Pura Vida", pronounced "puhrah veedah" - it means 'everything is good, very good.... I will smile wider now every time someone says that - and they do so often - its used as a greeting and the answer to a greeting.....

Pura Vida........ yesssssssssssss!

love and light

Annie

Online interview about this blog...

2010-04-30T11:28:00.001-05:00

Recently I was asked by Wegohealth.com to do an online interview...... here it is.

Be sure to look around on their site - there are a bunch or really interesting articles and help.

Here is a bit more information and some links to look at too. Please see if you can be a part of this group - its always a wonderful thing when people can help others through whatever it is in their lives. This is not only regarding CML, but covers many other health issues.

Once we are back home again I will be more involved with them too, right now I have just run sheer out of time!

Till later.....

love and light - and laughter! Thanks Esther :)

Annie

Upcoming CML Insight Groups:
In our ongoing mission to empower Health Activists to help others, WEGO Health is hosting online focus groups on Tuesday, May 25^th for people who are active contributors to the CML community online. We’re looking to learn more about the CML community, what folks are talking about, and what kinds of tools and resources might be helpful. These groups are being held on behalf of one of WEGO Health’s sponsors.

All participants will receive a $25 Amazon.com gift certificate, and WEGO Health will make a matching donation on their behalf to the National CML Society.

The sessions last one hour and are held remotely—participants can join from anywhere in the country, you just need to be online & on the phone at the same time. Groups will be held at Noon, 4PM, 6PM and 9PM Eastern Time.

If you’re interested in participating on May 25^th, the link below will take you to a short survey to see if the group might be appropriate for you:

CML Insight Survey (hyperlink goes to: http://www.surveymonkey.com/s/V58GZDK)

http://twitter.com/wegohealth
http://facebook.com/wegohealth

www.wegohealth.com
empowering Health Activists to help others

Spotlight on: Annie, author of the blog Living with CML

Active in the CML Community since: My son Steven was diagnosed March 2006.

Occupation: I fix, build, repair, re-program, de-virus, and upgrade computers

What do you do when you’re not raising awareness about CML: Photography, travel as much as possible, catch up with family and friends

What prompted you to start blogging after you learned of Steven’s diagnosis in 2006?

Writing has always been an outlet for me. Most times when you go through something this huge in your life, others cannot possibly “get it” without having gone through the exact same thing. So no matter how my family and friends wanted to help, they couldn't. Writing it down became a way to sort through and get rid of some of my frustrations and feelings of horror.

It was a very emotional and scary time and to tell the details over and over again as family or friends asked, took a lot out of me. Blogging was a way that I could tell it once and everyone who wanted to know could get the information. It also made it easy for those who did not know how or what to ask to keep up to date and deal with it in small chunks at a time.

You recently printed out a few copies of your blog and reread it from the beginning—did anything surprise you?

Oh yes! It really surprised me just how much I’ve written, what I put in and some of the things I left out. It also made me smile at how I would interpret a photograph according to what was happening with Steven or the thoughts and feelings in my life at that stage. I was in such a fog in the early days; I am really glad that I wrote it down or much of it would be forgotten by now.

It surprised me that in some ways it feels like just yesterday that we lived all that, and that the emotions still lie really close to the surface when re-reading the blog. At the same time it feels like a lifetime ago. I can now see that it’s not only a diary of Steven's CML progress, but of my growth, acceptance and how I have learned to live, give and care about so much more than I did before.

It surprised me just how much my focus has been able to shift from CML being all encompassing, to enjoying life so much more, with CML just an important part of it. If someone had told me back then that this would happen, I am sure I would not have believed it. It is also very interesting to realize just how much fuller my life is with everything and everyone that CML has brought our way. Our lives have really been enriched and strengthened over the past four years, and holding the blog in my hand in paper form really drove that home for me.

How has your blog changed since you started it?

The blog started as a horror story for me. Now, after seeing it in print and reading it again from the start, I see it as quite an amazing love and life story. It’s a story of the deep love and admiration I have for Steven and his wife, Laura; of the love and patience of my daughters, Lisa and Joleen, and my husband, Frank, while they waited till my focus could properly include them again - it took a while. The love and care shown to me from people all over the world while they were and are in their own world of pain has been absolutely incredible. But it’s not a story that is by any means over – every day contact with incredible people from many different parts of the world keep adding to this huge circle of support that is always available. This story is not only being built in the sad and bad times, but most definitely in the celebration of good times too, despite cancer in our lives. Perhaps because of it. The early words and memories of the blog are soaked with fear and loneliness. It’s so very different now, so much lighter, so much gentler.

Do you find there are particular challenges blogging as more of a “caregiver” than a patient?

Oh yes. For starters, sometimes it feels like I am whining about something that is not even mine. Someone said to me about a year after Steven’s diagnosis: "He is doing fine so have no reason to worry, and this disease is his, not yours – let it go!"

This is true, but as a parent of a child with cancer, life is just not that simple any more – we cannot just close that door to worry, it has to work itself closed over a period of time. I am also not really Steven's caregiver – that is primarily Laura's role and she is totally amazing. She keeps a close eye on him every day and deals first hand with the side effects, frustrations and worries that go along with this all - I would love to tap into her mind and really understand her role.

I am always aware that I have no idea what or how Steven (or anyone else with CML) is coping with it, but I can write about my feelings and struggles in learning to deal with the fear and changes that a cancer diagnosis in my child brings. In a situation that is really good right now with Steven holding on to lovely low test scores, it is a wonderful, and almost free, place to be able to write from.

What do you wish someone had told you when you first learned that Steven had CML?

That they had made a mistake and that he just had flu…

I am not sure that anything anyone could have told me would have sunk in or made a difference when we first learned that Steven has leukemia. Getting Steven to see Dr. Druker about five months after his diagnosis was the very best thing we could have done. Dr. Druker instilled such peace, hope and normalcy in us all. After that meeting, I listened to my son sing as we drove from Portland to the coast. That’s not an ordinary occurrence and it was truly a beautiful noise! That was a turning point in all our lives. A good one. I wish a “Dr. Druker visit” on everyone with CML.

What’s the most common question people ask you about CML?

People don’t really ask anything particular – they read the marrow donor plea on the shop wall, and sometimes ask if that’s our son. It does not seem to be widely known that there are a quite a few different types of leukemia and they are often surprised that CML can be treated “as easily” with a Gleevec pill a day.

Normally, after they read or hear about Steven’s diagnosis, eyes go soggy, heads tilt and I can almost see them scrabbling for words. I quickly reassure them that he is doing great, that he will be ok, that he is going right on with life and I tell them how important becoming a bone marrow and blood donor is.

Most times, talking about Steven’s diagnosis opens the door to them telling me about their own cancer experience and so often their words tumble out in a manner that shows that even years later, they needed to share their story again. It’s fascinating and wonderful and has taught me that almost everyone has a story of some kind that needs and deserves listening to.

Is there an area of CML research that has you most excited right now?

Yes, there are a few very interesting trials going on that I have so much hope for. The people who are in these trials are the forerunners to a cure for Steven and the many other CML-ers out there. They have my utmost admiration and the deepest possible thanks – each one of them. Every step forward towards the possible cure of CML is reason for excitement and hope and it’s absolutely wonderful to see just how much research is being done in this field.

What has helped you the most during the past four years?

The most helpful thing has definitely been the fact that Steven is so open with me about everything regarding his CML. I cannot imagine not knowing a test result, or when his blood tests are done. I know that either he or Laura will come to me with any worries or questions they have, and this really does free me up to get on with my life without creating those dreaded ‘what if’s’. It allows me to look at Steven with fewer ‘mama-scans’ and see CML as only the very small part of him that it is now. In the first couple of years, I have to admit to thinking first of CML and then of the person whenever Steven came through the door. Now when he works with us on Saturdays, the whole day will go by without any worry-thought being tied to him – just wonderful. I could not have reached this space in my life, or been able to put CML aside to this extent, if he and Laura had not been willing to share it all. I know my relationship with Steven would not be as close as it is now if things had been any different.

The online support groups were absolutely critical to helping me become more even keeled and especially to learn everything I needed to about CML. They were particularly important in the first two years. They really were my 24/7 help line that kept me going then. They’re still a constant source of information that comes directly from personal experience and an incredible amount of knowledge from all over the world. The ability to post a question there and get a response from someone who is going through the same issue is priceless.

The people that I met through there and through my blog are all a huge part of who I am today and because I am ok, I firmly believe that Steven is able to move on in a more whole way too. All these people, and so many more, will always be a part of our lives.

What’s the best feedback you’ve received since you started Living With CML?

It’s all been the best – from the moms reading what I write and finding help in the words, their stories of hope, heartache and help; the people who write just to make contact even for a little while; others that I have met on our travels around the USA – all the best.

The firm friends that have been made through CML and the continuing contact through the ‘frilly times’ into the more gentle and kind days—it’s a really great experience to follow someone through transplant and into the years beyond and to share the good days with them after so many really rough days.

Hearing that someone has seen just how important it is to let their mom know how they are doing and feeling, and that this helps their mom too, is such a bonus. To hear that a relationship between people has been improved or repaired because someone read how it helps me to know all the details, is phenomenal. It’s life changing.

So many people have shown us so much caring and each one is as special and important as the next. It’s an incredible feeling to know that just writing about my emotions actually helps others.

I feel deeply honored that I have been able to help in this way.

Bye bye, Sophie-do

2010-04-26T21:05:00.000-05:00

Our lovely, soft, quirky, weird, wonderful, smile-a minute doglet, Sophie had to be put to sleep today.

My heart is broken and the tears wont stop... She was only 2 years old but developed so many different problems - or maybe they all just hit her at once - but the last few days of her life she was mostly scared, totally blind, unable to walk and in some pain.

This did not lessen the pain of both making the decision to have her put to sleep, nor the act of carrying through with it.

From the minute we learned that she had not only suddenly gone totally blind but was hit with all the other neurological problems etc, our world changed and became even shakier again.

She was one heck of a doglet! From the start she tugged our heartstrings, she made us laugh a million times with her strange little ways. She made us softer, more caring, more loving and ......well, she filled our days, and nights too, with her presence and the incredibly funny things she did. She felt like those microfiber socks, all soft and gentle and it was just awesome when she chose to come up on the couch and cuddle with me in the evenings. She hated the cold and the wind and when she ran, her ears flopped around like schoolgirl pigtails. She would run around and around the shop, breathing heavier and heavier and then stand and look at me with what looked like a huge proud grin on her face, just waiting for that treat. She did not walk like a normal dog, but hopped like a rabbit and had this very unique movement like a rocking horse. She was Sophie, Sophie-do, Sophs, Sweetie-girl and Chicken..... and so, so much more..

What really stuns me, apart from the very obvious-ness of the incredible feeling of loss, is how empty, how quiet the house feels. I remember when we got her how busy the house suddenly felt..... she brought so much to us all and now... well, its gone. She's gone. I keep glancing over to her bed in the lounge to check on her, almost called her at suppertime, still find myself watching the clock so that I can take her outside to pee.... What a huge space this little girl doglet has left in our lives. She lit a spark in our life.

I hope there is a huge open beach somewhere out there for her, where she can run and try to tame the waves as she did on both coasts of the country, I hope she runs without pain and I hope she sees as clearly as day again and is not scared anymore.

I miss her so much.

She would sleep with her butt in the air...

She loved checking the side tables for goodies to steal.......

Not moving around anymore......Allie checking on her yet again

Sophie - I hope you are running free......bye bye, my girl

Dr Druker - First Citizen of Portland :)

2010-04-23T20:37:00.000-05:00

OHSU's cancer doctor Druker named Portland First Citizen

By Andy Dworkin, The Oregonian

April 21, 2010, 3:46PM

Dr. Brian Druker, a leading cancer scientist who heads Oregon Health & Science University's Knight Cancer Institute, was given the Portland First Citizen Award at a banquet Wednesday.

"I am incredibly honored to receive this recognition in my own community," Druker said.

Druker is one of the leading figures in targeted cancer therapy, the effort to find drugs that more specifically attack the biological flaws driving cancers while limiting damage to other, healthy cells.

He led the main human trials that proved the effectiveness of one such drug, Gleevec, which has dramatically improved the life of people with a blood cancer called chronic myeloid leukemia, or CML. Before Gleevec was approved for sale in 2001, close to a third of CML patients died within five years of diagnosis. Now, that death rate is closer to one in 10, and many die from causes unrelated to cancer. Gleevec is also being used against several other cancers.

Druker got his undergraduate and medical degrees from the University of California at San Diego. He came to OHSU in 1993 from a research job at Harvard, and was named director of the school's Knight Cancer Institute in 2007.

The First Citizen Award is one of many recognitions for the Minnesota native. Last year, Druker and two other scientists won prestigious medical science prizes from the Albert and Mary Lasker Foundation for research that, the group said, "provided a new paradigm for cancer therapy." He's previously received a lifetime-achievement award from the U.S. Leukemia and Lymphoma Society, been elected to the National Academy of Sciences and named a Howard Hughes Medical Institute investigator.

The Portland Metropolitan Association of Realtors gives the First Citizen Award each year "to honor civic achievements and business leadership within the community." Sponsors of the award banquet include The Oregonian andRegional Multiple Listing Service, a real estate database.

Life's treasures....

2010-04-07T21:56:00.004-05:00

Just the other day I read about a woman's blog that just disappeared from the internet and it made me think about how I would feel if this blog just went 'poof!' forever? So I spent some time going back in time, revisiting the places I had been over the past four years of Steven's illness. At times it felt as if someone else was writing and at other times I laughed...... "I really wrote that?!" What struck me the hardest was just how much these past four years has made me grow, made me open my eyes, really live life and .... well, just how far I had come on so many levels.

So - what to do about the possibility of losing everything? Print it! Do you know how many pages this thing is? Wow. I spent days turning it all around, the very first, very scared blog entry right at the top and 315 full size 8.5 x 11 inch pages later I reached the last blog of the first four years! Now its all sorted and ready to print, apart from the need to design a front and back cover. I am going to print two - one for Steven and Laura and one for me. It's like a life story.... a really good one too.

Reading through some of my earlier blogs and then reading the blogs of other people that have not been as fortunate as Steven in his good response to his meds, makes me see how incredibly fortunate I have been and am. I have so much to be grateful for and apart from Steven's health my greatest blessing really has been the people I have met along the way these past four years. These are the people who stand with me, sometimes leading me, sometimes pushing me and always alongside me at the same time.

These are the people who, despite their sometimes unutterable pain, still email me, still make me smile and still help me grow. They make me cry too, keep me sane and drive me nuts with my inability to make things right for some of them. Some others have grown with me as our kids get over and past the first years or as things change in our lives, as we learn how to live with this disease in one of us, and its wonderful to see how our conversations have gone from cml saturated to a breezy "no cml news" pushed somewhere inside a full email about life and other happenings.

These amazing, strong, wonderful and incredible people are of my most firm friends - even if most of them I have not met and probably won't ever meet. I will always be deeply thankful to every one of you, I certainly could not have done this without you. It really does "take a village".

Talking about cml and tests and things..... Steven's next blood draw is on the 27th of this month. The time has whizzed by so incredibly fast again but its always such a breath of fresh air to call OHSU to order the kit. The people who work there are amazing - I always get off the phone with them with a smile on my face, sending them happy thoughts. And this time the wait for the results will be a little bit longer for me. Steven will get them on time but this time I will be quite happy to wait the extra couple of weeks..... why?

We will be in Costa Rica when the results are due! Yup - I found some more jungle for us to explore, more beaches that look fairly deserted, places that hide poison dart frogs, slithering big snakes, fantastic birds and a volcano that we can watch as it spews it's lava - to mention just a few. There are those hanging bridges through the tree canopies, zip lines and boat tours that are just waiting for us, sunshine and unprocessed foods too. Ooooooooh - cant wait!

Love and light
Annie
ps - you can follow our Costa Rica trip at: www.travelbaggs.blogspot.com

My son in law.......

2010-03-28T23:03:00.001-05:00

This is Billy, Joleen's husband. In Afghanistan.

Hey SIL, stay safe please! We miss you and are really looking forward to seeing you when you get here for your leave soon.

Lotsa love from DMIL and everyone here

xxxxxx

Happy Birthday McKenzie

2010-03-23T21:05:00.000-05:00

Three years ago on the 20th, little McKenzie made her appearance and brightened our world.... Here are some pics of the celebrations :)

Happy Birthday, McKenzie......we love you!

Did you know..........

2010-03-22T19:58:00.001-05:00

Did you know that there are only 8,700 hours in a YEAR!??

In the same boat.....

2010-03-20T22:45:00.000-05:00

So many things go through my mind that are directly related to how I live my life these days. There are none of the dramatic ups and down of the early cml days, which leave a big bunch of time wide open for living life in an new and lovely way.

About two weeks ago when Steven was with us in the shop, we got talking about cml -just for a little while, and he was leaning casually against the door frame with a languid smile on his face, almost as if he was being gentle with me and he said "I think you had it tougher than I did, mom". Wow. WOW!

That makes me feel and think so many things....... number one being that how could it be right/fair or imaginable that I had a tougher time than Steven? He is the one with CML! I so hope that it never felt to him that I was "taking this away from him" as in making it mine etc etc. I am not sure how exactly to word this thought but it almost makes me feel guilty.. And then I thought some more...... and I really can say that I really do hope that I had a tougher time than Steven! With this thought in mind, I can put some measure to his feelings and dealings with this disease so far. Now I can almost imagine how he felt and feels about it. Now I can know without a doubt that he will deal with it all, no matter what. But only if that statement is actually how it is.

And these thoughts got me thinking about how important the togetherness of this ride has been. The picture above sort of says it all. Its a photograph of some local residents in the Amazon Jungle heading down the fast flowing Napo River. We are all like this - in the same boat going down the river of life that is always changing, never the same, full of surprises, some good, some bad... but we are all in the same boat! Someone will be in the front, the middle or the back and somewhere in between, but....... all in the same boat. How would it be if the captain of that boat did not let the others know where they were going or some other information relating to the endurance of that ride?

I often think of how incredibly fortunate I am that Steven shared every part of his CML journey with me. I absolutely know for a fact that if he had not shared, or stops sharing, his results, his concerns or issues with me, that this would leave me guessing and creating the worse case scenarios in my mind and nightmares. This would have made me watch him closer, monitor every nuance in his words on the phone, worry about every day that he was tired or simply had a cold or was in a bad mood.... I would have been so much more frilly and this would have driven us further apart. It would have kept CML in every thought relating to him, in every conversation and in all my thoughts and I would have been a pain in the butt.

I know...... I absolutely know that it is because he has been so open that I am able to get on with my life, to travel, get involved in my photography and really have a life where CML is simply a trickle in the background, always there, but so much smaller than it would have been otherwise. I know that he will let me know if anything changes - good or bad, I know that I can move on with my life and get even stronger and even less scared. If everything continues to go well with him, this 'free time' would be great, if things change, well then I have had time to regroup, enjoy some cml-free time and get strong for another fight ahead.

It makes me remember one mom that I used to chat with - her child did not want to share anything at all with her.... she was totally frantic! It took a while, but all is ok with them now - thankfully. I know that ultimately all Steven's medical issues are his. I have no right to the information at all......... but I would have to go and sit on a very high up mountain top in a very far away land and meditate very seriously if he kept any of it from me. It would break me apart, bit by bit.

As the captain of this boat, once the information about the journey is shared, the rest of the ride can be done with much greater peace of mind.... even if it is down a murky, unknown river. And this ride is providing so much joy.

By sharing the details, Steven has given me my life again. This thought only just happened as I was typing! How awesome...... and how true. A deep and resounding thanks to you, Steven.... You are truly incredible and I love you so very much.

love and light

Annie

CML Vaccine News.....

2010-03-11T10:44:00.000-05:00

This is the type of news I love reading. Even though the trial was done with very few people, its good news!

And to all those people who are prepared to go into these trials and others that will help find a cure for cml and other diseases...... a HUGE Thank You! Each of you is a stepping stone in the path of Steven's life, towards perhaps a cure for him and therefore I am deeply and forever grateful.

love and light

Annie

LINCOLNSHIRE, Ill., Mar 11, 2010 (BUSINESS WIRE) -- BioSante Pharmaceuticals, Inc.(BPAX 1.92, +0.21, +12.28%) today announced positive results of a human clinical study that show that its GVAX Leukemia vaccine may be able to reduce or eliminate the last remaining cancer cells in some chronic myeloid leukemia (CML) patients taking the drug Gleevec (imatinib mesylate). All patients enrolled in the trial used Gleevec for at least one year and still had cancer cells present. The study was conducted by researchers at the Johns Hopkins Kimmel Cancer Center in Baltimore, Maryland, led by Hyam Levitsky, M.D., professor of oncology, medicine and urology at the Cancer Center. The research was funded by the National Institutes of Health.

In a study published in Clinical Cancer Research, Johns Hopkins Sidney Kimmel Comprehensive Cancer Center investigators used a vaccine made from CML cells irradiated to halt their cancerous potential and genetically altered to produce an immune system stimulator called GM-CSF. The treated cells also carry molecules, called antigens, specific to CML cells, which prime the immune system to recognize and kill circulating CML cells.

"We want to get rid of every last cancer cell in the body, and using cancer vaccines may be a good way to mop up residual disease," said Dr. Levitsky. "More research to confirm and expand the results is needed," Levitsky said.

The GVAX Leukemia vaccine was given to 19 CML patients with measurable cancer cells, despite taking Gleevec for at least one year (range 13-53 months). Each patient was given a series of four vaccines administered in three-week intervals while remaining on a stable dose of Gleevec. After a median of 72 months of follow-up, the number of remaining cancer cells declined in 13 patients, eight of whom had increasing disease burden before vaccination. Twelve patients reached their lowest levels of residual cancer cells to date following vaccination. In seven patients, CML became completely undetectable.

Patients receiving the GVAX Leukemia vaccine experienced relatively few side effects that included injection site pain and swelling, occasional muscle aches and mild fevers.

"We are very excited by these GVAX Leukemia vaccine data," said Stephen M. Simes, BioSante's president & CEO. "Johns Hopkins Kimmel Cancer Center work in leukemia using BioSante's GVAX is one of many different forms of cancer being investigated, including pancreatic cancer, breast cancer and multiple myeloma. We look forward to working with Johns Hopkins's investigators to bring better cancer therapies to patients in need. BioSante owns the commercial rights to all GVAX vaccines as a result of our acquisition in 2009 of Cell Genesys."

According to the investigators, most patients with CML will need to remain on Gleevec therapy for the rest of their lives. More than 90 percent of them will achieve remission, but about 10 to 15 percent of patients cannot tolerate the drug long term. Gleevec, one of the first targeted cancer therapies with wide success in CML patients, destroys most leukemic cells in the body, but in most patients, some cancerous cells remain and are measurable with sensitive molecular tests. These remaining cells are a source of relapse, according to the investigators, especially if Gleevec therapy is stopped.

In 2010, approximately 5,050 new cases will be diagnosed with CML and approximately 470 people will die. The average person's lifetime risk of getting CML is about 1 in 645. The average age at diagnosis of CML is around 66 years. Over half of cases are diagnosed in people 65 and older. This type of leukemia mainly affects adults, and is rarely seen in children.

Dont quit.........

2010-03-09T15:05:00.000-05:00

These words were given to me a good while ago and the photograph is one I took of Steven and Laura on the Oregon Coast when we took him out to see Dr Druker.... I am trying to sort out my photographs and found this again - so now you have it too :)

Love and light
Annie

1460 days have passed - 4 years!

2010-03-05T23:01:00.001-05:00

A moment in time.......

So much time has passed, and yet it feels like yesterday when I think back four years... It was this week four years ago that all our lives changed so dramatically, and tomorrow - the 6th March - will be the anniversary of the first time we officially heard the word 'leukemia' tied to Steven and all our futures.

Looking at my thin, pale and sick child, I was just petrified. I had no idea at all of how to deal with this at all and the words just flowed out of my mouth trying to promise Steven that we would keep everything normal as long as possible while he just sat on that table and swallowed over and over and looked at that horrible piece of paper that described different leukemias. Even though the thing I most wanted to do at that moment was to promise that it would all be ok - I could not do it. That was so hard...... that this was all so out of my control, and his too. I have always hated rollercoasters, and this was one of the worst possible.

And so we find ourselves 1460 days down this road and doing better than we could have imagined in our wildest of wild dreams! Plenty of frilly times in those days, many days that my nails have been bitten short and grown again, just to be given the same treatment.. I am sure that my hair has given up and I am going to have to revert to the bottle...... no no, not *that* one - the hair color bottle! :)

But its all so good......... Steven is doing so well, looking so good, moving on with his life in so many very normal ways and takes his Gleevec each and every day as part of this not-so-new-life of his. He works with us most Saturdays which is just great, but it also gives me the opportunity to see for myself that he is ok on all fronts. The first few Saturdays he spent with us, I did check him out closely, Robo-Mom in full swing, and cml was definitely in my mind most of the time - but not any more... Now, so often, at the end of the day I am amazed that I had not even thought of it once! Never in my wildest dreams just 4 years ago did I think that there would ever be a day without cml in the forefront of my mind every minute - let alone for a full day.

And I think of just how much I have grown from this cancer in my son. The people I have met along the way, the friends I have made and the experiences that count for so much. Before Steven was diagnosed I honestly had so little knowledge of cancer and even less 'know how' in dealing with the people living with it. Today a lady with a sick computer came in to our shop and we got chatting about all sorts of things..... and yes, the impact of cancer in my life was spoken about and I could just see her story bouncing around in her eyes - yup, she is a 17 year breast cancer survivor with an attitude that just sparkles! I cringe to think of how I would have handled her story just a mere 4 years ago.....

The people that I am in contact with regarding cml and the support groups, have been my main source of information and peace of mind over the years - especially the mom's of other cml-ers. These ladies are deep in my heart and are absolutely incredible, each and every one of them. They make me laugh, help me cry, keep me real and help me move on with my life too, always holding out their hands and hearts ready to share the load... Ladies - you know who you are - you are just incredible, Thank You!

And so I have come to the conclusion (again) that even though I wish with all my soul that Steven did not have to deal with this, that so much good has come to us all from it. Steven is stronger, Laura is awesome with it all, we have met so many wonderful people and done some really serious and wonderful growing. I can honestly say that I am a happier, fuller person, a person who is so much more sure of what is important in life and who has much more depth of character than before.

I am deeply grateful that Steven is responding to Gleevec so well. I see every day almost how easily it could be different, how easily we could be on a much scarier road. Hans , who is on the Ariad trial, laying the groundwork for the road ahead in the cml world, and all the others on trials to both help their own health as well as to be a part of helping others - they are all amazing people and I take my hat off to all of you and thank you deeply for your actions that will help determine future treatment for Steven. A special "good luck shoutout" for Yanni, soon to join a trial. For everyone just newly on the cml road, hang in there - I wish you a smooth road ahead. Tyler and Mandy, who are struggling with the progression of cml even after a transplant....my heart is in my throat and I will keep believing that you will make that u-turn and get the leukemia under control again.

Everyone has a story and in so many ways everyone's story has made me stronger and more capable of dealing with cml in my son. I honestly believe that because of this input from everyone, Steven sees a more stable mom and through this is also able to deal with it all in the wonderful way he does. So a huge Thanks to everyone I am in contact with - you are all part of this huge healing and dealing circle that I absolutely treasure and that I know has a direct bearing on Steven's attitude and peace of mind.

Steven, you have handled this illness in yourself in such an amazing way. I see such an incredible difference in you over these past four years, I see a determination, strength of character, responsibility and a sense of humor that just makes me want to shout with pride and brings happy tears to my eyes. I am deeply grateful to you for allowing me to be such an integral part of your treatment and journey with cml - I don't know what I would be today without that. You really are one incredible young man and I am deeply proud of you.

And so year five starts........ may the next four be as awesome as the past four.

Love and light
Annie

Greeeeeat Results!!

2010-02-14T21:06:00.002-05:00

Results are in and they are g-r-e-a-t!

BCR-ABL/G6PDH RNA ratio : 0.0087%
BCR-ABL RNA (International scale) : 0.020%

The results read: The international scale(IS) defines a BCR-ABL RNA level of 0.1% as being equivalent to a 3.0 log reduction from a standardized median pre-treatment baseline value. This 0.1% international scale level is, by definition, a 'major molecular response" (MMR) as established in the IRIS study.

Steven had been hovering around the 0.19% (IS) mark for a good many PCR's and now this jump downwards almost at his 4 year anniversary. This is great news, but we are aware that another two PCR results of this type is needed before we really break out the party :)

Funny, it was this time that I was a tad more concerned - or was it nervous, about the results. Steven looked a bit pale lately, but I never really know if its because of the approaching pcr or its results... Maybe it was just me. It definitely seems that way with these results :)

You know how people will tell you to "go to your happy place" when you are stressed out or going through a procedure that hurts... well, waiting is like that - in many ways and on a good few levels 'hurts' too but let me tell you that its almost impossible to 'go to my happy place' during those days. I don't sit around and mope, I don't bite my nails too often anymore while waiting and I dont let the worry take control of me, but I always feel how good it feels when the results are in by comparison to just a minute or three before that.

So much changes as soon as those results come in.....everything looks brighter and ... well - its wonderful. Especially this time! So...... here are some of my 'happy places' I love - just a few.

ps..... can you tell that I am a happy bird now ? :)

Waiting.........

2010-02-09T23:30:00.000-05:00

Waiting drives me N-U-T-S!!

Sometimes I feel as if my head is really closer to my rear end (no comments, Kate!:) than on my shoulders, and the world feels upside down - but then I know that somehow, sometime it will all be right again...

There is a little shop just down the road from us that hand carves full size carousels and is now busy with a project in repairing a bunch of old animals that were thrown away or just let to get too old.... This particular horse really had me thinking that this is exactly how I feel around this time of waiting for test results.

We are still waiting for those blasted PCR results. Waiting drives me nuts..........

It will be ok. It will be ok. It WILL be ok!

Dr Druker gets Portland First Citizen Award :)

2010-02-03T15:38:00.001-05:00

Dr. Brian J. Druker will receive the prestigious 2010 Portland First Citizen Award in April.

The award, given by the Portland Metropolitan Association of Realtors, has been given annually since 1928 for outstanding contributions to the community.

The award will be presented at the Portland First Citizen Banquet, to be held from 11:30 a.m. to 1:30 p.m. April 21 at the Governor Hotel.

Druker, who specializes in the treatment of chronic myeloid leukemia, is director of the OHSU Knight Cancer Institute and holds the JELD-WEN Chair of Leukemia Research at Oregon Health & Science University. He also is an investigator for the Howard Hughes Medical Institute.

Druker is credited with leading the development of Gleevec, a revolutionary drug that helped push the survival rate of leukemia patients from 50 percent to 90 percent.

Gleevec has been approved by the Federal Drug Administration for use in pediatric patients and six other cancers.

Druker has received numerous awards for his work on the development of Gleevec, including the 2009 Lasker-DeBakey Award for Clinical Research, sometimes called “America’s Nobel." He also received the Lance Armstrong Foundation’s Pioneer of Survivorship Carpe Diem Award and the Medal of Honor from the American Cancer Society.

Druker joined OHSU in 1993 after earning his medical degree from the University of California School of Medicine at San Diego. He completed his residency at Washington University in St. Louis, Mo. and did an oncology fellowship at Dana-Farber Cancer Institute at Harvard Medical School.

A forerunner of the Realtor group established the First Citizen Award in 1928 to honor civic achievements and business leadership in the community. The organization will also present its Future First Citizen Award to a promising high school student and the PMAR Good Neighbor Award to a Realtor member for commitment to the community.

Always lurking.........

2010-01-19T20:55:00.003-05:00

Maybe it's because of the stuff in my last blog, maybe it's because its nearly PCR time again or maybe its just me being a worry-wart mom........ but my antennae are up and vibrating again. Steven has his PCR blood draw on Thursday and then its that long interminable wait - again.

On Saturday he casually mentioned that he had been losing weight - around 5 pounds this month..... this was after I noticed his wedding ring was really loose... Losing weight? Why?? Spleen? sick? What!?!? aaaaaaaaaaaaaaarrrrrrrrrrrggggggggghhhhhh. How I hate when this happens. So I really want to jump all over him and ask why and what and when and how come he can lose that weight and I cant! I want to make light of it, I want to believe that its just the normal up and down of weight in a very normal way.... and it probably is.

But I am sooooooo tired of 'probably'!!

I have noticed that there are many days that I don't even think of cml now, that life has sort of absorbed cml into the big picture on many levels. Its not that I am ignoring it - that would be like ignoring the air we breathe..... It just is. But then come times like this past week where everything piles back into my brain again and, well, its just plain uncomfortable and it effects my days in ways I don't like.

So here is my dilemma/question...... I believe that if something is bothering Steven about his CML, I believe that he will talk to me about it. So when I feel like I did when he told me about the weight loss, do I then immediately think of cml and ask the questions? or do I assume that its just normal fluctuations and let it go or make light of it? If I ask all the questions, maybe that comes across as too much of a worry mom and if I don't maybe I come across as if I have moved past it all and am not as tuned in as I should be. Big Sigh.

I know that we are so incredibly fortunate on so many levels, I know that some people will not even understand why I worry like I do sometimes as "all is ok" and "its all under control", but I do! Yes, Steven's cml is under control and he is in a safe place with it..... yes his blood counts are all looking fine and yes it seems crazy to worry. But this is life and this is me and its flippen PCR time again and my nails are already short....

CML is always lurking like a shadow in my heart and mind - always capable of turning a day, a week or my life upside down. Soon these next results will be in and my nails can grow again and life will feel less tenuous again and it will be warmer too and.......... and.......and.

Today I am a bit sad. Sad that Steven and Laura are dealing with cml as well as starting out in life. I know that many others have much deeper things to deal with, but this is their story and I am sad that they have this as well. Just because this is by far not the worst case scenario does not mean that its not big in all our lives and sometimes I feel almost guilty for taking this so deeply when so many others have the loss of their kids to deal with.

I just want so badly for everything to be good....... damn pcr time.. This will pass too.

love and light

Annie

The bugs in life....

2010-01-10T20:41:00.005-05:00

The New Year has always started with a goodly dollop of hope mixed in..... hope for warmer weather, for a start! I have always made resolutions and not many have succeeded so I stopped doing that.. well, definitely stopped the ones that included the words "diet", "food" or "thinner". I have found that to resolve to worry less and live more for the moment is tied directly to what is going on in my life each day, so that is a useless resolution.... This year my resolution is to just be. Just be everything I can in each moment of the year. Sometimes it will be less than I should be, sometimes more..... but in each instance - I am going to allow myself to Just Be.

Months and months have gone by with so little worry about cml on my part..... there are a good many days where although cml is in my mind, it's not in worry format... it's just there, a part of every day life and actually rather gentle and easy on the mind. It's so good to let those terrible early days just gently waft into the distance in the rear view mirror and smile in thanks of the good things that have come into my life because of Steven's cml.

But tonight that peace was rocked upside down again by these words: "One patient in particular had a very hard time and after an initial good response to Gleevec became resistant to everything. Turns out she had developed T315I. Her disease was particularly aggressive and had seriously compromised her overall health. She went on the Omacetaxine trial but was really too week to withstand the treatment.

With very few options left, Pauline spoke to a few doctors and opted to try a BMT as a last resort. She knew, as we all did, that this was very risky and the prognosis was not good, but she had no other options to explore: either you go into hospice care or you try for the 20% chance that it just might work for you. Her disease had not yet gone into blast phase. Her sibling was a relatively good match.

Unfortunately her fragile system was unable to help her new cells engraft. Pauline, a fellow Canadian CMLer, left us on Wednesday. She was a warm, loving, brave person."

My heart goes out to Pauline's family and friends...

I know that this does not happen to everyone, actually - not to many at all..... but its NOT what I want to read about and this happening to even one person is too much for my internal comfort! I am so grateful that Cheryl-Ann did post this on Jerry's support board, because it makes me think.... makes me aware of every day of my life again. It reminds me how quickly everything can change for any of us, and not necessarily in regards only to Steven and cml.

I don't want read about someone with cml not responding to anything and ultimately dying because I want to believe that the meds of today will just make this a simple, totally and completely controllable disease. I want to believe that there is no need anymore to worry about Steven or any of the others I know with cml, I want to believe that the worry days are behind us all - especially Steven and Laura. I want to believe that Steven will just take his 400mg Gleevec every day and the road ahead will hold no more surprises

But life just is not cut out like that at all.......the bugs in life are still around.

It's funny how I was quite happy to jump into a lake in the middle of the Amazon Jungle that I knew had pirana, boa's, cayman (alligators) and many other critters in it.... The boat was not even fully stopped and I was overboard with a smile .... but hearing of one person passing away while having cml literally stops my world and makes me think again of what is really important in life.

It makes me think that no matter where we are in life, there is beauty. Sometimes we cannot see it, sometimes its not our time to see it, but its there... always...

So, this year....... I am going to 'Just Be' - bugs and all. I am going to jump into those waters, over and over again in my mind, enjoying life in the 'peaceful zone' as long as possible.

Lea - a special note to you....... 4 years has passed since you first heard about your cml and you and your family have been down a very long and rough road, but all along, you have inspired, helped and encourage others, me included. You are tremendous, amazing and a very powerful person.. The 'bugs' in your life have not stopped you in any way - you just keep on powering through everything handed to you with love, grace and a smile.. I don't think you even know just how inspiring you are to so many people. A huge thank you! And may this year not only be wonderful, but wonder-filled for you all..

Sooooo..... may this year be all it can be.

love and light

Annie

Wonderful news!

2010-01-10T20:23:00.004-05:00

Dylan B - Son of Matt and Wendy........

Here is life, hope and a brand new baby soul bringing joy to his very happy parents. Despite Matt having CML and being on Gleevec, Dylan arrived on the 27th December 2009, a couple of days early, perfectly healthy and absolutely beautiful...... :) See? It looks as if he is already calling the shots and telling the world what to do - just look at that little finger!

Congratulations Matt and Wendy.... what a beautiful little son you have. Read Matt's CML blog here.. http://hatefulblood.blogspot.com/.

The birth of their little boy is such positive news, not only for them, but for the CML community. These babies are commonly referred to as "Gleevec Babies" - Gleevec being the cml medication Matt uses to keep his leukemia at bay. Each time I read about a baby born while dad is on Gleevec, it makes me smile just a little wider. By the time Steven and Laura are ready to start a family, I know I will worry just that little less.

A big thanks to Matt and Wendy for sharing their news with us all........

love and light

Annie

More Great news........

2009-12-30T20:38:00.008-05:00

I just love this........... Here is another person that is benefitting so well from the newer CML meds.... in her own words :) Thanks, Lottie for sharing this wonderful news! I can't wait for you to get your Zavie Zero Number - finally, after 14 and a half years! What a wonderful way to end one year and start another... So much hope, so much to be thankful for......

UPDATE!! Lottie has Zavie Zero Club # 1000!! Look at all those zero's! :)

------oOo------

A Short CML Success Story

by Lottie Duthu

If anyone in the medical field, like an oncologist had ventured to tell me over 14 years ago that I would still be here in spite of having CML, I would have had serious doubts about that doctor's ability to be truthful with his patients.

It's difficult to explain what leukemia is to someone who doesn't have it and has no background knowledge of anyone who does, or who has never met a CML patient. In all probability, they never met one. I have met several patients who never met another CML patient until they met me.

I have been in five trials, beginning with all trans retinoic acid (a high concentration of Vitamin A) and Hydrea (which controls high white counts). Included was allopurinol to keep from getting gout from the Hydrea. To make a long story short, I then went to Inteferon and HHT, then to Gleevec, then to Sprycel and lastly to SKI 606. I was not keen on getting this drug, as I hadn't heard of anyone who had achieved any remission. My doctor believed in it, however and even though I was on a sub-optimal dose because of severe side effects, he made me stay the course.

This week after over 14 years of waiting my turn to announce that I was in CCR, which meant that out of 20 cells examined, all were normal.

Even though we have billions of cells, we never know where the CML cells are hiding (quiescent cells), so we never know if we have gotten them all and this is only the first big step. (At the start, most CML patients may have all 20-25 cells with the Ph abnormality. With treatment one hopes that the number of Ph containing karyotypes decrease and eventually reach the magic zero number. When all cells are now zero and no Ph cells observed in the metaphases sampled, one is then deemed in complete cytogenetic remission CCR).

The fact that it took this long is reason to be hopeful. No matter what the situation, we look for a solution. Short term is sometimes all we can get, but it will get us to the next phase and give us us extra time; in the meantime, we move on, never giving up. Never allow yourself to spend too much time on a pity party, you are wasting your time on negative thinking. There is a time to cry and a time to dry the tears and get to work. The employees liked seeing me come in to the office supply stores, because they knew I was there to buy paper, printers, faxes, ink cartridges and a mass of other office supplies. In these 14 plus years, I have used up 4 computers, 2 faxes, ink cartridges and 6 or 7 printers, always keeping one black and white, and one for color. I made copies of everything; however, now I do less copying, as I have learned a little.

When Annie asked me to write something for her CML blog, I wondered what I had to offer and it is what I have learned from questions that have long been asked of me, and my answer is to always keep hope alive. If someone as old as me and having had CML as long as me has managed to hang in and live this long, then there must be hope for them, too. There is no free lunch, you have to work at it. Look for the best doctors and hospitals, join a support group and keep your mind active. Be thankful for what you have, there are billions of people who would trade places with you, just to have a clean bed to sleep in, a roof over their heads and 3 meals a day. I think I am pretty darn lucky to have been diagnosed just before the second generation CML drugs were approved and offered to everyone. What you don't know can hurt you, so I am of the opinion that we never finish learning - there is always one more person to teach me something I need to know and if I close my mind, I will never know what it was.

--------oOo----------

Just lovely, hey? :)

love and light

Annie

Hope is doing darn well!

2009-12-28T22:07:00.004-05:00

Right before Christmas this wonderful news came through for Hans, who has had the unfortunate experiences of neither Gleevec or Sprycel doing what it needed to do for him...... Read his cml blog and his wonderful news here.

Basically Hans is a part of the Ariad trial of which I know very little apart from that it's giving him better results than he expected and so soon too! Hans, I just love your graph - it really makes it clear as to what is happening here. This wonderful news really made my day, kept an extra bit of smile on my face through the Christmas season - I can only imagine what it must have meant to you and your family.

I had quite an experience this year - and only realized it the next day... We spent Christmas Eve all together at Lisa and Brian's house..... Steven and Laura were there as was Joleen, all the kids, my sister, mom and nephew and his wife. It was altogether a lovely evening and I went to sleep feeling really great. And then, while chatting with Greg (read his blog here)half way through the next day, I realized that I had not thought of cml once - not once, the whole night! How absolutely amazing is that?

It's taken almost 4 years to get to this point and this when all is going so well with Steven... In a very small way for a very short time, I almost felt guilty for not thinking about it but then the smile came back and I am so glad, so incredibly glad.

2010 will mark 4 years since Steven's diagnosis, and Hans' great response on the Ariad Trial gives me so much hope for so many still struggling to get a drug to respond to their "version" of cml.

Hope lives, strong and beautiful.

love and light

Annie

The Star

2009-12-21T21:22:00.004-05:00

This year I decided not to have a Christmas Tree. And then I decided to have one. Then I changed my mind again...... and again. Last night my daughter went to the store and saw a cute lonely little Christmas Tree, standing all by itself outside the door. It's just not possible to leave a tree out there all by itself like that in the cold! So off sweet Frank tootled to pick it up for me - as he says, he "trudged 5 miles in 4 foot of snow in subzero temperatures, uphill both ways", to get that tree for me..... all said with a wicked smile :) And so our tree came home.

It stood there in front of the fireplace, warming itself up and getting used to its new home while I sat eyeing it wondering just when I was going to work up the enthusiasm to put its Christmas clothes on.... And so the evening went by until I was ready to go to bed. Then I heard this little voice from the kitchen; it was faint, but definitely calling my name........ it was the sound of the beautifully chilled wine in the fridge singing in tune with my happy little wine glass. Again, can one resist such beautiful things? And then I saw that an episode of House had just started on tv, and I had not seen this one.

That program fascinates me - not for the normal reasons but because it seems to me that an incredible amount of false dx's are made and huge and dramatic treatments done or suggested at times and then so often, all is solved in a relatively simple way right at the end. I like the relatively simple fix, just not all the other options that seem to loom around every corner. Anyway - its interesting. Occasionally Dr House seems to flippantly demand a bone marrow transplant and I cringe........ that easily? Wow....... ya, ya, I know it's just the movies, but still.

Ok - back to the still naked Christmas Tree. What with House fixing people and a sparkling glass of wine I decided that I would dress the Tree and I was surprised at what happened.

My very first Christmas Tree in my very first apartment, which was a million years ago, was a special tree, an irreplaceable excitement and proof that I had grown up! I was 19 years old and had my very own Christmas tree......proof! The others that followed marked the years passing by, the first tree after Steven was born, then Lisa's first tree, then the first tree with Joleen too - all three kids together. As with most people, putting up the Christmas Tree became a tradition, something that simply gets done, something that is part of Christmas time and almost a chore......something that must be squeezed between everything else that needs to be done around this time of year.

I remember happy Christmas Trees, many obligation Christmas Trees, a particularly sad one and another that made me sob with every decoration I added. Then came a Christmas tree that was dressed with happiness again.... that was just a mere year ago.

And this year - this year was just lovely. I realized that I am no longer dressing a tree for anyone, from any obligation, for anyone or even the time of year. I looked at that naked tree, breathed deeply the fresh pine smell that oozed out of every limb and I smiled. I turned her around finding her best face and started..... Each bauble found it's home naturally, each light lay gently on a branch and lit the deep inside of the tree and added multiple color sparkles to the tinsel.... The little gifts that represent so many of my good and wonderful, strong and lovely friends nestled easily on the branches ....... my tree just came alive! She sparkled with life...... what a lovely surprise!

As I added the pretty things to her and the sounds of the tv faded way into the distance, I thought of all those that have come into my life in the last few years - the very real gifts - and how they have not only enriched me, but those around me too. I have learned so much, been humbled so many times, grown in leaps and bounds beyond what I thought possible and have learned to treasure every day. I have left my comfort zone so many times in these past almost 4 years since Steven was diagnosed with CML and have found this to be incredibly rewarding. I have learned to be happy, really happy.

And now, after a good many years and a good many changes in those years, I have found a place where putting up a Christmas Tree is something I already look forward to doing again next year. I see that this has become a tradition just for me..... I loved the thoughts that happened as I let my mind wander and watched how that naked, cold tree that waited just for me, turned into this beautiful Christmas Tree that just sparkles with joy and happiness.

I love the star the most of all the decorations. Many years ago when the kids were still kids and we could just not find that star that was perfect, Steven and his cousin James, got hold of a couple of coat hangers, some tinsel and an angel - and they made the very best Star possible. It makes me smile every time I look at it. It makes me thankful for the years that were easy, the years when cancer was not a player and for the years that led me to here, for the people and the circumstances that have helped me and walked with me during these times to the place I am now. It makes me thankful for all the years..

So with a very happy smile, a wonderful peace in my heart, a deep thankfulness for everyone in my life, I wish all of you a wonderful Star of your own. I wish you peace and gentle voices in your head, love and a simply wonder-filled Christmas.

Love and light

Annie

ASH Report by Jan Geissler......

2009-12-18T21:59:00.003-05:00

Standing tall and strong against CML....

Here is a wonderful article written by Jan Geissler - a report on this year's ASH. I have highlighted some parts of this in red - these parts really sing to my soul, sooth me and keep that smile on my face. Here's a HUGE thanks not only to Jan Geissler for summarizing this for us all, but to all those scientists and doctors who are working so hard to literally keep my son alive for the next 80 years!

So you see, Steven....... you cannot feel old already - you have a loooooooong way to go! :)

Here it is..........

Tuesday, 15 December 2009

ASH 2009"Actually, why do I always spend St Nicholas in the US, instead of with my family", I asked myself when I boarded the plane to the USA on 4 Dec, in anticipation of a boring 16 hour trip to New Orleans, arriving jet-lagged, hiding for days in the dungeons of a large convention center, lacking any sense of the city I am in. Year by year, more than 20.000 hematologists and healthcare people attend the annual meeting of the American Society of Hematology, lovingly called 'the ASH' by repatriates. Its publications are all available on the Internet. "Is it really worth the effort being there again, instead of just using my browser?", I thought. It is. Definitely.

If there is a place to see latest research and treatments for blood disorders, it is 'the ASH' -- the place where just about every expert is that has a say in leukemia research. All top experts from the CML space are presenting their research here. I can't withstand the impression that the whole hematology community keeps quiet about a year of research results – just to be able compete for the hottest piece of news from trials at ASH. Some unnamed hematologist, when I asked, has admitted that they need to pick straws who has to stay at home to keep the clinic's services up and running
during their absence. It became already apparent on my flight from Munich to the USA: I had the impression I was almost the only one not knowing everyone else in the plane. A plane full of hematologists. So I went there again this year. It's all been a little compressed because I didn't want to spend too many days out of office and away from my family. Hence I missed the satellite symposia on Thursday as well as the last sessions on CML on Tuesday. But the days I've been there have been "full speed download" to my brain. Being back in Europe now, I am now trying to grasp the most important things I learned. I will share the most interesting abstracts in a separate document, so this is mainly to summarize what I found most impressive in the CML sessions.

Education Session

Brian Druker On the first day, I attended the Education Sessions. It is thought to give hematologists an overview on the current status quo of managing CML. Dr Druker, Talpaz, Goldman and Hughes spoke. In the room I felt like a single BCR-ABL gene in a good molecular response – the biggest meeting room in the convention center can probably hold 10.000 people at a time -- a couple of hundred participants almost got lost in there. It was impressive because Dr Druker held a keynote, honouring the 10th anniversary of Imatinib given to CML patients. A chart what the CML survival was in the pre-Imatinib era again struck me. Before bone marrow transplants were introduced in the 1980s, the only way to treat CML was palliative, meaning, reduction of symptoms until the unavoidable death within months. Today the key challenges in CML are managing resistances and relapses in those patients that to not achieve good remission, or to investigate whether stopping or less aggressively maintaining therapy in good remission is feasible. Overall survival rates in early diagnosed CML are pretty close to the general (healthy) population. We've come quite far, fortunately. But not far enough. People still become resistant or cannot tolerate the drugs, and need to cope with a life-long therapy. Dr Talpaz and Dr Goldman summarized quite well where we stand in CML therapy today:

* What we have: effective first line and second line treatment;
* What could be improved: managing toxicity, improving response rate and duration, avoiding development of resistance, when to change drugs, coverage of "Archilles heel" mutations;
* What is missing: T315I inhibition, elimination of the leukemic stem cells, and treatment discontinuation.

I was glad to see how active the CML research community is to close these gaps.

First line CML therapy

In terms of first line therapy after diagnosis, it's been quite simple for newly diagnosed, chronic phase CML patients over the last four, five years: Imatinib was the the gold standard, the only first treatment of choice. Clear treatment guidelines were provided, based on the "ELN recommendations" which were updated just last summer. At this year's ASH, all experts seemed to refer to these criteria and recommendations on managing standard treatment, suboptimal response, treatment failure and monitoring. Now, with the new "second generation" drugs striving for "first line" treatment, we can see a number of new options (and questions) coming up. At ASH 2009, the first line data of comparing Nilotinib and Imatinib in newly diagnosed patients was presented. In the past I have always been a little
suspicious about the enthusiasm for Nilotinib and Dasatinib becoming first-line: for Novartis to be ready with something equally expensive when the Glivec-patent ends in 2016, or for BMS to get a larger piece of the tasty (and huge) Glivec cake. Now there is first evidence that a more powerful treatment at the start might actually make sense.

We know from the IRIS trial, whose 8 year data was presented just with a poster showing that no new surprises came up in long-term follow-up, that relapses on Imatinib happen mostly in the first years of treatment: about 6% of all patients relapse in the first three years, then the relapse rate drops near zero. Now with the ENESTnd trial directly comparing Imatinib 400mg/day with Nilotinib 2x400mg/day and 2x300mg/day, not only quicker responses were observed on Nilotinib, but also the progression rate in year 1 was significantly lower than on Imatinib. Of 282 patients in on Nilotinib, only 1 progressed to advanced disease, while of 283 patients on Imatinib, 11 progressed. In addition, the frequency of treatment interruptions due to side effects was comparable between the options. This was only a 12 months follow-up, some more years are required to get more clarity – but it is an interesting perspective. The challenge of adherence to Nilotinib due to a twice daily schedule, as well as the requirement not to eat before and after taking the drug, will remain a challenge though. Off the record, I heard that similar comparative first-line data on Dasatinib and Imatinib might get ready for publication by EHA in June 2010. This is where it will get really interesting, as it will allow us to compare response rates, progression rates, and side effect profiles of all three drugs in first-line.

Along these lines I found interesting that Imatinib-800mg frontline therapy in chronic phase has come a little out of focus. Last year at ASH, some experts were still enthusiastic about "more-is-better" and proposed 800mg/day as first-line, given it had shown quicker responses than Imatinib-400mg. The latest results from the the TOPS and GIMEMA studies have now marginalized that after 18 months: There seems to be no advantage in outcome of Imatinib-800mg in comparison to 400mg. In addition, other comparisons presented by Dr Cortes have shown that response rates of both
Nilotinib and Dasatinib are higher than Imatinib-800mg, with less side effects. So high dose imatinib as initial therapy in chronic phase seems to be no longer regarded (in chronic phase – in advanced phases of course this
seems to be a different story). Other approaches that were discussed by Prof Goldman as initial therapy were combining Imatinib with familiar agents (Cytarabine, Interferon/IFN, Omacetaxine, Arsenicals), or the three TKIs in varying sequence.The French SPIRIT study, as presented by Dr Guilhot, has demonstrated a significant higher rate of optimal molecular responses in the Imatinib-IFN combination (BCR-ABL/ABL below 0.1% at 18 months: 36% on Imatinib400+IFN vs. 19% in Imatinib400 alone). Similar findings were presented on a poster by Dr. Simonsson from Sweden (major molecular responses after 12 months: 86% of those on Imatinib400+IFN, 54% on Imatinib400 alone). More about that below.

Managing Resistance

Much has been published in recent months about managing resistance to Imatinib. While only a small proportion (15%) of patients treated in chronic phase develop a resistance or show suboptimal response, choosing the most
promising follow-up treatment has been a key topic of interest. More than 100 different mutations are known today. Only a very small number, mainly the fearsome T315I mutation which makes up around 15% of all mutations, is resistant to all of Dasatinib, Nilotinib and Bosutinib. Most mutations can be overcome by dose increase or one of the three drugs – but which one to pick in which case is still a key question. To have a tool for decision making, researchers compiled a table of sensitivities of mutations based on "IC50 values", which measure the level of inhibition of cells in vitro. However, first question marks came up, when Dr Laneuville observed discrepancies between IC50-insensitivities in the lab, and observed response in real patients. He said that obviously some mutations respond differently in the body than in-vitro data would predict. More data on real-life results would need to be collected and documented.

In terms of T315I, Dr Cortes reported about Omacetaxine (Homoharringtonine) which is an intravenous chemotherapy with specificity against CML cells in general, but also frequent side effects. About 27% of patients achieved a major cytogenetic response, even though it was not very durable (median 5 months). More than half of chronic phase patients with T315I have seen a reduction of T315I clone, but only 9% a complete reduction. More pulsating, there are two new promising targeted therapies to BCR-ABL, using a different mechanism than Dasatinib, Nilotinib and Bosutinib. They seem to be effective on the T315I mutation with good tolerability: Deciphera's DCC-2036 and Ariad's AP24534. Dr Talpaz presented first facts on oral DCC-2036, even though he mentioned first trial data won't be available before ASH next year. Dr Cortes presented a phase I study with oral AP24534 where 43% of patients with T315I achieved a major cytogenetic response – quite encouraging. Furthermore, there were reports of MK0457 and XL228, both aurora kinase inhibitors which block an important signaling pathway in leukemogenesis independent of T315I/BCR-ABL. However these are both given intravenous.

However, experience with these drugs are still very early, and trials are rare – so as Dr Nicolini presented, bone marrow transplant currently remains the treatment of choice in case of T315I, if a donor is available.

Stopping treatment

Dr Hughes presented the Australian "Imatinib cessation" study. In that study, 32 patients were included that had shown complete molecular remission for at least 2 years prior to the study. 17 of them were previously treated
with IFN and then Imatinib, 15 had Imatinib as initial therapy. About half of them relapsed within 18 months, most of them within 6 months after cessation of Imatinib, independent of IFN pre-treatment. Dr. Mahon presented the "STIM" (Stop Imatinib) study. In the pilot study, patients needed to be in complete molecular response (PCR negative) for at
least 2 years before entering the study. 69 patients were included, 34 with previous IFN treatment and 35 only with Imatinib. Of these 69 patients, 41 patients relapsed within the first 7 months. There was no difference between the groups that were pre-treated with IFN, or those that did not have IFN before. He concluded that it is possible to stop treatment in patients with sustained complete molecular response, but recommends discontinuing only in a clinical trial with strict molecular monitoring. During the discussion of STIM, Dr. Talpaz raised the question about the
anxiety of patients stopping therapy. Dr. Mahon answered that patients seemed to be happy because Imatinib side effects disappeared with cessation of the therapy. However this was debated because by experience, side effects
would have been minor in most patients after the 2nd year of Imatinib already.

Imatinib-Interferon combination

Dr. Guilhot presented the French SPIRIT Trial on 12 month follow-up with 695 newly diagnosed patients. Treatment arms were Imatinib-400mg, Imatinib-600, Imatinib-400+AraC, and Imatinib+PegIFN. 636 patients were now analyzed. Now at 24 months, there was a clear advantage of the Imatinib+IFN group, with 46% of patients in optimal molecular response (PCR smaller 0.1%), while only 26% of the Imatinib-400mg patients achieved the same response. 22% of Imatinib-PegIFN-patients became PCR-negative, compared to 10% on Imatinib only. Overall, 5-10% of patients discontinued Imatinib during the first year, and 45% of patients discontinued PegIFN. Average doses of Peg-IFN were
54µg/week. He concluded that the superiority of Imatinib+PegIFN combination in term of molecular responses was confirmed at 24 months. Weekly dose of PegIFN has now been decreased to 45µg for the first 3 months of treatment.

There is a relationship between duration of PegIFN exposure and the depth of molecular reponses (which seemed to say, my personal interpretation: better a constant low dose, rather than a high dose of IFN with the risk of
interruptions). In a Nordic CML Study Group (Denmark, Finland, Norway and Sweden) and Israel multicenter study a total of 130 newly diagnosed patients were randomized. CML patients had to be in complete hematological remission following 3 months of Imatinib-400mg induction therapy. The study arms were Imatinib-400mg, and the combination of Imatinib-400mg and Peg-IFNa2b (PegIntron, Schering-Plough). Imatinib dose was fixed at 400mg. Peg-IFN was
started at 30 µg/week but could be escalated to 50 µg/week or reduced down to 15 µg/week depending on tolerability. Major molecaluar response rate at 52 weeks was significantly higher in the Imatinib+PegIFN arm (82%) compared
to the Imatinib-only arm (54%). No unpredictable complications or adverse events were reported.

Interestingly, the presented observation in the German CML-IV Study (comparing Imatinib-400, Imatinib-400+AraC, Imatinib-400+IFN, Imatinib-800, and Imatinib-after-IFN-failure) did not come to the same conclusions. In the trial, so far 954 patients were evaluated. In this study, incidence of major molecular response was higher in Imatinib-800 (61%) as compared to 42% (Imatinib-400) and 45% (Imatinib-400+IFN). Overall survival by therapy did not show any significant difference between the arms. When I asked off the record, some were assuming that the difference might be due to "normal" Interferon being used in the CML-IV study, while the above studies used pegylated Interferon, leading to better tolerability and hence better exposure of the CML cells to Peg-IFN.

Lastly, the Italian GIMEMA trial comparing Imatinib-400mg with Imatinib-400+IFN: While there had been initial advantages of the combination arm, at 24 months these differences were lost. No surprise: the proportion of patients in this trial continuing IFN dropped from 41% at 12 months to 18% at 18 months, 13% at 24 months, 3% at 36 months, and by the end of the fourth year, all patients were off IFN. No information about IFN dosage was given (but some might suspect dosage was the problem).

Interferon maintenance

Dr Burchert (Marburg) presented an update to the German Peg-IFN maintenance study. He reported that while Imatinib has shown high efficacy, it fails to eradicate leukemic stem cells and suppresses leukemia-specific immue responses. At the same time, Interferon stimulates T-lymphocytes against CML cells. In the study, 20 patients were treated with Imatinib+IFN. 19 were in complete cytogenetic response, 15 in major molecular response, and 2 were PCR negative. Patients stopped Imatinib and continued with Interferon only. After 2.8 years, 4 had further improved their response, 9 remained stable, and 5 had a gradual relapse. As a conclusion,Dr Burchert said that achieving PCR negativity would not be a prerequisite for successful Imatinib termination and IFN maintenance therapy.

CML in Children

One of the unforeseen surprises was the presentation of data on Imatinib treatment of children with CML. Childhood CML is extremely rare, with only 2% of all childhood leukemia cases, so data is very limited. Prof Suttorp from Dresden presented the results of the PAED-II study. 51 patients were recruited. Median age was 11 years (1-20), 48 in chronic phase, 1 in accelerated phase, and, 3 in blast crisis. 6 of 42 patients stopped Imatinib because of insufficient response. 4 received 2nd generation TKIs, 2 opted for stem cell transplant. 49 of 51 patients are alive today. The researchers observed an impact on bone metabolism: the effect is that Imatinib decreases osteoblast development and activity, decreasing bone growth. As a conclusion, Suttorp said Imatinib treatment results in high response rates, while side effects are tolerable. Therefore, stem cell transplant has been shifted to a 2nd line strategy also in pediatrics. Changes in bone marrow metabolism and growth impairment are of special concern in not yet outgrown pediatric patients.

Adherence

The issue of adherence, or compliance to therapy, remains to be a challenge with TKIs. Dr Goldman presented data collected at the Hammersmith hospital. In a trial, they had provided patients with a medication bottle whose cap had some electronics built in. The bottle automatically recorded each time the bottle was opened. That way they observed that more than every fourth CML patient did take less than 90% of the prescribed dose, and every seventh less than 80%. They found a strong association of response to therapy with adherence rate: the 6-year probability of achieving major molecular response was 28% with those patients taking less than 90% of prescribed doses, and 95% for those that were adherent. The same applied for complete molecular response (0% vs 44%). Interestingly, when comparing the electronic measurement against what patients said to their doctor, patients claimed to be much more compliant than they actually were. This shows the lack of adherence remains largely underestimated (Abstract 3290).

Summary

It was again a great time at ASH, not only from the perspective to meet friends and top doctors, but also from coming home with the confidence that even though CML therapy has already radically improved over the last years, there is exciting progress and a lot of enthusiasm to close the existing gaps. There is still a lot of room for improvement – about every seventh CML patient does not respond to Imatinib up front, and a number of patients can't tolerate it. However, the second line data of (lower dose) Nilotinib, Dasatinib and Bosutinib presented this year seems to be a great step forward, and for the "last bastion", the T315I, there are a number of new drugs in trials which seem to be targeted, promising and tolerable. This is great news to me, in comparison to ASH 2008.

In terms of finding a cure, there could still be more progress. However, I could see progress in research targeting residual stem cells, understanding mechanisms behind suboptimal response, avoiding early progression with improved first-line treatment, and considering new (and/or more affordable and/or more tolerable) long-term maintenance therapies. In contrast, the results of the "STOP" trials from France and Australia have not convinced me – if the relapse risk is fifty-fifty, I would be hesitant trying it if I can tolerate treatment well, even if re-starters seem to respond again to
Imatinib.

Recent reports about low-dose Interferon as maintenance therapy in minimal residual disease – in combination with Imatinib or not – are promising, as shown in Germany and Sweden. Maybe further research will show who has an immune response to Interferon, and those might have a minimal relapse even after stopping all therapies. However, it seems low dose Interferon requires adaptive dosing: In the Italian GIMEMA trial all patients stopped Interferon treatment within 3 years because of side effects, while the Swedish and the two German trials had shown long-term benefits with good tolerability. But one of the best ASH messages for me was from Childhood CML: In CML kids, whose decisions should be based on the expectation that they should expect another 80 years of life, transplantation has now become second line after Imatinib. I think – and hope – this is a message for all CML patients: that experts are expecting current therapies to keep us alive in the long term. Chances seem to be good that we have the chance to grow very old, as long as we adhere to therapy – until someone has found the bullet to kill also the
small gang of stubborn CML stem cells off.

All this is encouraging. And this is why I spend St. Nicholas in the US.

Jan Geissler, 13 Dec 2009

Look who's here!

2009-12-16T22:56:00.003-05:00

Presenting Steven William Cothran

Brian (Dad) and Steven

Lisa and Baby Steven

Just too beautiful for words!

Steven's namesake arrived on December 14th at 11.22pm after a very short labor - from my point of view anyway. He weighed in at 9.9lbs and took up a goodly amount of the tape measure.......... I dont have those numbers - but he is a big boy...

It was just fantastic being at the birth - thanks Lisa and Brian! Joleen was there too and was roped in to help during the labor. She also got to cut the umbilical cord. It was just a wonderful experience.

I had the camera in there with me and got a good many really beautiful photos of some lovely moments - so many good memories recorded.

So now I am Granny Annie to 5 beautiful children - what a richness this is!

love and light

Annie

Preliminary Good News from ASH.....

2009-12-05T23:28:00.000-05:00

ASH: New CML Drug Overcomes Resistance Mutation

By Ed Susman, Contributing Writer, MedPage Today
Published: December 05, 2009
Reviewed by Zalman S. Agus, MD; Emeritus Professor
University of Pennsylvania School of Medicine.

Earn CME/CE credit
for reading medical news

Action Points

Explain to interested patients that this report describes preliminary findings about an investigational drug that is not FDA approved and is not available for clinical use.

Note that this study was published as an abstract and presented at a conference. These data and conclusions should be considered preliminary until published in a peer-reviewed journal.

NEW ORLEANS -- Promising preliminary findings from a small study suggest a possible treatment for imatinib (Gleevec)-resistant chronic myeloid leukemia (CML), researchers reported here.

Researchers had already identified the the cause of resistance -- the T3151 mutation -- and now they may have a fix for the problem that has become the Achilles' heel of CML therapy, Jorge Cortes, MD, professor of medicine at the University of Texas, M.D. Anderson Cancer Center.

The investigational drug, omacetaxine, being developed by ChemGenex Pharmaceuticals Limited, based in Menlo Park, Calif., and Melbourne, Australia, "represents a new potential therapy for patients with T315I-positive chronic myeloid leukemia," Cortes said at the American Society of Hematology meeting.

That hopeful note emerged from a study designed to evaluate the safety and efficacy of subcutaneously administered omacetaxine in patients with imatinib resistant T315I Philadelphia chromosome-positive chromin myeloid leukemia. Patients were given 1.25 mg/m²subcutaneous omacetaxine twice daily for 14 days every 28 days until hematologic response for induction therapy.

For maintenance therapy, patients were dosed twice daily for seven days every 28 days.

Although the mean follow-up time was short, Cortes said the early results revealed a number of promising findings including:

After a mean of nine months follow-up, 86% of the 49 chronic phase patients in the study who no longer were controlling their disease with imatinib had achieved a complete hematological response.
About 27% of patients had achieved a major cytogenetic response, defined as absence of Bcr-Abl mutation in at least 35% of cells.
Roughly 18% of the patients had achieved a complete cytogenetic response -- all the cells appear to have lost the Bcr-Abl mutation.

The median age of the patients in the study was 58 years, and ranged from 19 to 83. Their median time diagnosed with chronic myeloid leukemia was 54 months. Imatinib failed to control the disease in all the patients; 79% had failed two or more prior tyrosine kinase inhibitors. The presence of baseline T315I mutation was confirmed in all patients.

Cortes said the study did not have a control arm because there is no established treatment for patients whose disease has progressed despite use of imatinib and other tyrosine kinase inhibitors in the face of the T315I mutation.

He explained that omacetaxine, which is not approved in the U.S. or Europe, has been used to treat leukemia in China for many years and it appeared to work against the mutation in the laboratory.

"What is encouraging is that we are seeing that patients are able to respond to this therapy," he said at a press briefing here. "It is self-administered subcutaneously and we have seen that it is very well tolerated."

"One can draw a parallel between the acquisition of antibiotic resistance in bacterial infections and the development of drug resistance due to a mutation in this case which blocks the binding of drugs like imatinib to the active site in chronic myeloid leukemia cells," said Richard Larson, MD, professor of medicine at the University of Chicago, who acted as a moderator at the press briefing.

He said omacetaxine and other drugs in the development pipeline will be important in treating even small groups of patients.

"It is fair to say that therapeutic breakthroughs never occur quickly enough to help everyone. The good news is there are a lot of new agents in the pipeline. The challenge is that each subset of disease becomes smaller," Larson said.

Thanksgiving thoughts.......

2009-11-26T22:25:00.003-05:00

First, I hope you all had a wonderful thanksgiving. Most of you that read this blog have been in contact with me via email or phone and I thank you all dearly for enriching my life, for making me stronger, for making my life brighter. I would not be who I am now without each one of you, so - thank you!

Each year rolls around and Thanksgiving arrives just as the cold weather makes itself felt..... and then I start thinking about the things I am thankful for and realize that the list is indeed very long. Each time I create this list in my mind, it's people that are at the top. No matter how much all the other stuff makes life easy and fun and nice, without the amazing people in my life - it's all nothing.

And then I think about how far back I need to go..... should I be thankful for those that have hurt me in the past, created temporary havoc or who have nearly made me break? And each year I think I should. I am deeply grateful that they made me stronger and more determined to be better, to do better and to move on. Grateful that I have been able to leave them behind and not waste time on anger and remorse and grateful that through these growth spurts of mine, my kids have all benefitted and grown stronger too.

I looked at my brood today with such great pride and joy. There are three amazing young people and their partners and children all interacting in a lovely easy way, caring and laughing, teasing and watching out for each other.

Once again I realized just how fortunate I am to have my family intact.... so many people I know just don't have this anymore. Yes, those who have died live in our hearts, minds and memories - but even I know that this would simply not be enough for me and that hole in the family would always be felt. There is nothing I can say that can change those feelings, but I know that it makes me treasure what I have even more, and more deeply.

My life has become so much richer over these past three-and-something years since Steven's leukemia diagnosis and much of it is because of the people I have met who are also dealing with cancer in some way or another. But its not all directly because of that.......

Steven's diagnosis shocked me to my core, rocked and nearly capsized my world - but again, it's the really tough times in my life that have made me grow the most - and this time was no exception. I have learned that life really is too short; that those are no longer just wise words in a power point presentation or something. I have learned that even through the tears, there has always been someone or something to be thankful for; that to give is the very best way to drag myself out of a depression and that once I realized that I really had no control, my only 'job' was to live my life so that I could wake up the next day and actually like myself.

I have learned to let go many things, to find joy in small things, to mark each day as an adventure, a challenge and to "just be". Just be everything I can be at that moment. That also means that by sitting on the couch and relaxing is also being 'useful'....... to me!

The lessons I have learned in three short years have, in many ways, set me free. Set me free to be everything I can and want to be. I know this has made me a happier person, more easily approachable and a nicer person too...... and I see that this has had such a positive impact on my three young adults.

Now I hear myself rambling.......... so.... this year I am deeply thankful for Frank and his ever present support of what I need to be totally me, and for us to be a solid us; for my simply amazing children and their wonderful partners and lovely kids. I am thankful for my Mom who is one incredible lady that has taught me so much, who has inspired me and given me strength to deal with the challenges in life. I am thankful for an awesome sister, Kate, who has promised me a "ride on a magic carpet"! and who has been a friend to me through everything. Dankie sis! And then to all my friends, those right here close by and the many that are spread all over the world... I treasure all of you and you have all become a part of the foundation of who I am and helped make me a better person.

And so another Thanksgiving Day has come and gone again .........I wish that we all hold on to these thankful feelings and thoughts and not wait until another year has passed by before telling each other these things.

love and light

Annie

Lovely couple.......

2009-11-12T21:46:00.001-05:00

Results are in....... and Hero's!

2009-11-12T20:18:00.005-05:00

Well, well...... now that I have stopped getting so 'frilly' while waiting for the pcr results, now they only take 2 weeks to come back, instead of the full and very long 3 weeks before now........

And they are.................... virtually the same again. Just a tiny hop DOWNwards to 0.19% on the International Scale. It's amazing that just that very small, tiny little difference in test results makes the muscles at the corners of my mouth to pull outwards and upwards without any thought and seems to open my breathing tubes at the same time. And I did not even know that I was tense.

So - another quarter has gone by and all is still on an even keel and again, the world feels lighter, the day brighter again, the sunset more beautiful and everything seems to be less jagged. Not that any of it was, but good news in the pcr department always greatly improves an evening for me :)

Many things float through my mind, sometimes driving me nuts and other times reminding me how good life is....... Yes, there are the dark and nervy times and yet they can only be recognized because of the good times in our lives. Thanks Cat, for reminding me! No matter how hard a day is, if we just open our eyes we cannot help but see some light.

There are newly diagnosed CML-ers all the time and their road is really scary but there are many good and successful stories; people living with cml and people surviving transplants too.. There are the good stories with this disease, its just that most people write when life is not 'normal' and stop when it all goes back to that new normal... This is good, but not so good for anyone newly on this cml road.

Today I have been thinking a lot about donors. They are such special people; people who sign up to save a life - on purpose with thought and time used. It is no accident that they are in the right place in the right time, no co-incidence, no luck. They save someone's life on purpose! Not only do they save a person, they save the family, the extended family, the friends and even the community. How awesome is that? How awesome is a donor........ That's not a question - its a statement.

Today I got an email and in it was a link to these stories of donors....

Tom’s Story: From Marrow Donation to "Extreme Makeover: Home Edition"

I joined the Be The Match Registry^SM in 2000. I’d heard about a local Colorado girl who needed a marrow donor. Unfortunately, she didn’t make it, but her story stuck with me. I researched where I could join the registry, then drove to Pueblo where I joined through Bonfils Blood Center, a recruitment center for Be The Match.

Getting the call
Two years later, I was called as a possible match for a woman, but she developed complications and couldn’t go through transplant. It was an absolute disappointment for me to realize I almost had the chance to help somebody out, but then I couldn’t.

In 2004, I received another call. This time the patient was a 29-year-old wife and mother from Illinois. I went in for further testing and I asked a lot of questions. I knew I was going to go through with the marrow donation –- it would be foolish and selfish not to. But I asked a lot of questions. I wanted to understand the science.

The donation experience
People ask me a lot of questions about how bad bone marrow donation hurt. But you are under anesthesia during the procedure. It hurts some when you are awake, but let me put it this way: I had the procedure on Thursday and was back at work on Monday.

On the day of the donation, I wasn’t worried about pain or discomfort. My one fear was that the doctors would say “You can go home; we won’t be going through with the marrow donation.” I just wanted to give the patient an opportunity to live.

And donating really wasn’t a big deal, in that the effort it took on my part was minimal. Yes, you can say I saved a life, but my part was just a little cog in a machine built by scientists and doctors.

Making contact with Joey
After the one-year waiting period, I learned my recipient’s name: Joey Stott. We talked on the phone and sent a few e-mails. Prior to contact with Joey, the whole experience was very rational. There was a logical progression in every step. When I got to talk to Joey, it all became very emotional.

All I hope for Joey is to have a great life. To have the opportunity to continue to be a wife, a mother, a daughter -– to have more time with her family.

So when I found out ABC’s Extreme Makeover: Home Edition was building Joey and her family a new home, I was happy to help with the project. I hope that when the episode airs November 15, more people will know about Be The Match and how easy it is to save a life and keep a family together.

October 07, 2009

Wilbur's marrow donation experience

Wilbur donated bone marrow through the National Marrow Donor Program, which operates the Be The Match Registry^SM. This is his story.

The opportunity to pay back
My wife works for the post office, and this was how we became involved. (Editor's note: The United States Postal Service's long partnership with Be The Match has added more than 47,000 donors to the marrow registry.)

But the reason for my donation goes back to before I was born. It hit me like a brick wall when I got the call to possibly be a bone marrow donor:

I've finally found a way to repay the person who not only gave me life, but also saved my life very early on.

My mother's choice
While pregnant with me, my mother was told she had developed a form of cancer. The doctor told her she could treat the cancer but the baby wouldn't live through the treatment, or she could bring the baby to full term but she would die because the cancer would be too far along. Without pause, my mother decided the baby would live.

As it turned out, the doctor was wrong and my mother didn't have cancer. Had she decided to have the treatment, I wouldn't have been born. Service to others, putting them first before her own needs -- that's how my mother, Mary E. Baughn, lived her life. (After 74 years and two bouts with cancer, Mary passed from this life to her heavenly reward.)

My choice
Second thoughts about doing this? Never entered my mind!

I hate needles and my family knew this. They all wondered how I would go through the "pincushion" phase.

Well, it wasn't that bad. I really never had a lot of pain, even after the marrow collection procedure.

Everyone I talked to at the National Marrow Donor Program, especially my contact person Cindy Hofkes, made me feel like I was the only person they were dealing with. The donation procedure at Miami Valley was a breeze, thanks to all the wonderful people there.

Only a few people get a chance to possibly save a life. Sign up! Be a match!

October 06, 2009

Luz’s Bone Marrow Donation Experience

Luz donated bone marrow through the Be The Match Registry^SM. (Luz is shown with her husband, Santiago, and daughters, Gloria and Grace, who all supported her through the donation process.)

Luz's donation story:
I decided to join the registry when our church was looking for a match for one of our pastors. I joined in the summer and by October of the same year I received a letter stating that I was a possible match for a patient.

Of course, there was no question in my mind about donating. I have two daughters and the girl that would be receiving my bone marrow was only seventeen.

"Seventeen, wow!" I thought. "She should be thinking about prom and graduation, not about whether she would find a donor."

I went back for more tests and it was determined that I was a match. I donated marrow.

My experience was hassle- and pain-free. Veronica -– my donor center representative -- was very professional and compassionate. I did some research on the internet and found that it was supposed to be painful, but I did not experience any pain or discomfort.

I donated on Wednesday and by Saturday I was back at work. I knew I was in God's hands. By being exposed to the idea of donating marrow, my older daughter found that she could be a volunteer courier, and she joined the program. It's her way of contributing.

Donating was an amazing experience and a little surreal. Imagine, being a match for somebody who is a total stranger. Wow!! Isn’t God amazing.

I hope that by realizing that this was a pain- and discomfort-free experience, others will be inspired to donate. I am thankful for the experience.

----------oOo-----------

How can you help? Here are three ways, just for starters!

Help save a life this holiday season

You may not be called as a donor this holiday season, but you can still make a difference. Here are three things you can do today:

1.	The easiest gift: Tell at least 5 friends how they can save a life.

2.	Add a note to your holiday letters about your commitment to Be The Match and the opportunity to save a life.
3.	Help us raise $1 million for patient assistance so more patients like Joey Stott can focus on healing.

-----------------oOo---------------

If any of you know or are a donor and would be willing to tell your story for this blog........ please do so! I would LOVE to hear from you....

love and light

from one very happy, relieved and smiling

Annie

Life thoughts......

2009-11-04T08:53:00.003-05:00

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Locked but lovely.....

2009-11-03T21:27:00.006-05:00

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

Annie

In Dr Druker's words........

2009-11-02T21:51:00.003-05:00

A CONVERSATION WITH BRIAN J. DRUKER, M.D.

Researcher Behind the Drug Gleevec

By CLAUDIA DREIFUS

Published: November 2, 2009

Dr. Brian J. Druker, 54, an oncologist at Oregon Health and Sciences University and a Howard Hughes Medical Investigator, is one of three winners this year of the Lasker-DeBakey Clinical Medical Research Award, often called the “American Nobel Prize.” Dr. Druker shared the honor with Nicholas B. Lydon, a former researcher for Novartis, and Charles L. Sawyers of Memorial Sloan-Kettering Cancer Center, “for the development of molecularly targeted treatments for chronic myeloid leukemia, converting a fatal cancer into a manageable chronic condition.” Here is an edited version of a conversation that took place last month in New York:

Brian Lee for The New York Times

Q. WHAT WAS LIFE LIKE FOR PEOPLE WITH CHRONIC MYELOID LEUKEMIA, OR C.M.L., PRIOR TO YOUR RESEARCH?

A. Life was pretty miserable. If you were over 40, the main therapy was interferon, which prolonged life for maybe a year in perhaps 20 to 30 percent of patients. Interferon made the patients feel awful — like the worst flu. The only other hope was a bone-marrow transplant for younger patients. The problem there was that the death rate in the first year was 25 to 50 percent.

C.M.L. patients were always difficult to see because both of us knew that the clock was ticking and there was virtually nothing that we could do about it.

Q. It must have been depressing to be an oncologist under those circumstances.

A. When I started my training in the 1980s, you rarely cured people. You felt, “if I can give my patient extra time, I’ve been successful.” But I could see there was a transformation of cancer treatment on the horizon thanks to breakthroughs in biochemistry and genomics. I wanted to be part of that, which is why I was a physician-researcher.

The way I’d been trained, cancer was seen as something like a light switch that was stuck in an “on” position. You were given a baseball bat, which was chemotherapy, and told to knock the light out with the bat. I thought, “Why don’t we just try to figure out why the light is stuck on, then we can fix it without breaking everything.”

So I started my laboratory career studying the regulation of cell growth — what turns the switch on, what helps it shut down. And that’s how Gleevec is different from earlier chemotherapies, which basically poisoned every cell in the body in an attempt to kill the cancer. Gleevec turned off the light switch and only killed the cancer cells.

Q. How did the idea behind Gleevec first come up?

A. By the late 1980s, C.M.L., though rare, was a cancer that scientists knew a lot about. We knew, for instance that a chromosomal abnormality existed in every C.M.L. patient. We knew that this abnormality created an enzyme that caused the uncontrolled growth of cancer cells. If you put this enzyme into animals, they got leukemia.

So in 1988, Nick Lydon, who led a drug discovery group at a pharmaceutical company that eventually became Novartis, came to talk to me. He was interested in developing drugs to block a family of cellular enzymes implicated in several cancers. I said to him: “If you want to develop targeted chemotherapies, C.M.L. is the disease to study. We know the most about it — and, if we can figure out a way to block this enzyme, we can turn off the cancer switch.”

So in Nick’s lab at the pharmaceutical company, he began screening for agents that worked on C.M.L. He’d send me his best compounds. I found one, STI571, that was better than the others; it would kill every C.M.L. cell in a petri dish. By 1995, STI571 was a lead compound set for clinical development.

Q. So Gleevec was on its way?

A. Not quite. Gleevec was a completely different class of drugs than what was used against cancer. Most researchers thought it wouldn’t work. Then, in 1996, before we were about to go to trials, Nick’s company merged with another, and he left. Gleevec was now caught in the changeover. I lobbied with the new executives. After some ambivalence, they agreed to go forward with Phase 1 trials. I think they felt it wouldn’t work and they could get rid of us afterwards.

But during clinical trials we saw this miracle: Once the patients were up to effective doses, we got a 100 percent response rate.

Q. Had that ever happened before in a clinical trial?

A. No. Never. You’d see patients where interferon wasn’t working, and they’d been issued a death sentence. Suddenly, all their hopes for the future were restored, and, with minimal side effects! This was around 1999, and the Internet chat rooms were just beginning. Patients in the trials began talking to each other like they’d never done before. I’d see a patient, and I’d read about it on the Internet that night: “few side effects,” “100 percent response.” Patients would come to me and say, “My doctor has never heard of this drug.” I’d never written it up. I hadn’t presented the data. Their doctors thought I was a charlatan. For a lot of people, Gleevec was simply too good to be true. But these once-dying patients were getting out of bed, dancing, going hiking, doing yoga. The drug was amazing.

Now the drug company had to make another decision. They hadn’t made enough drugs for a large-scale Phase 2 trial. But patients knew about Gleevec, and many more wanted to be included in the trials. Through the Internet, they generated a petition that landed on the C.E.O.’s desk, asking for greater access. That’s how Phase 2 was rapidly expanded.

Q. YOUR FRIEND AVICE MEEHAN OF THE HOWARD HUGHES MEDICAL INSTITUTE SAYS THAT YOU HAVE THE MOST AMAZING PERSEVERANCE. IS THAT WHAT IT TOOK TO MAKE GLEEVEC HAPPEN?

A. I think I’m more perseverance than smarts. There’s a basketball player who says, “Hard work beats talent when talent doesn’t work hard.” Well, I work hard. I understood that this project was too good to give up on. My patients needed me to do something to help them. I did everything I could by getting them a drug I thought would work.

When the drug looked like it was finally going to be approved, I was interviewed by a reporter from People magazine, Alexandra Hardy. She asked, “Who are your good friends?” I said: “I don’t have any. I work, eat, sleep, go to the gym.” She said: “You’re pathetic. You’ve got no balance in your life.”

Well, there is now. Alexandra and I got married, and we have three wonderful children.

Q. Gleevec was ultimately proved effective against two cancers, right?

A. Ten. It’s now F.D.A.-approved for 10. Gleevec went to market for a small disease, 50,000 patients, and it later got tested for other things. It’s now used by 200,000 patients worldwide.

Q. Do you see any of that?

A. I don’t see a penny, though that never was an issue for me. When I obtained the compound, it was already patented. I wasn’t going to get to test it if I tried to put my mark on it. I wanted to work on it because I thought it was going to be the way to treat C.M.L.

You know, my patients were people who’d been told “to get their affairs in order” because they were going die soon. And now some of them play with grandchildren they’d thought they’d never live to see. That’s worth more than money.

----------------------------------------------------------------------------------------

What a man Dr Druker is. Every time I look at Steven, it's because of Dr Druker...... It's as simple as that. I would not be seeing my child, if not for him. Thats incredible, humbling and creates a depth of love for this man that goes beyond anything 'normal'.

This article made me realize again just how tenuous life is, how one man stood between my life now and a life that would have been just unimaginable....

Thank you, Dr Druker........ thank you!

love and light

Annie

Under a rainbow........

2009-10-27T21:25:00.006-05:00

Is it a safe place, under a rainbow? What about a double rainbow? If it was, guess where I would put ........... well, everyone I know!

We have just come back from the most incredible vacation... A week on a houseboat in the Amazon Jungle, then two days in Quito, Ecuador, touring that beautiful city with a guide that was so passionate that it was easy to get to love the place in those two short days. Then off to the Galapagos Islands we went, for an eight day cruise around those amazing islands, seeing many incredible creatures and enjoying the ocean, fresh air and sparkling night skies.... Then three days in Lima, Peru, across the Andes Mountains to the gorgeous town of Cusco, the Sacred Valley of the Inca's and .... yes, Machu Picchu! 28 days of incredible beauty, wonderful people, fascinating creatures, delicious food, flowers and experiences. Unforgettable. Link to that travel blog: http://galapagobaggs.blogspot.com

and to some of the photos: (see the folders on the left)

http://s761.photobucket.com/albums/xx257/GalapagoBaggs/

And all through this time, cml travelled along with me, but mostly at the back of my mind. I found very little need to talk about it at all. I honestly think that deep down, I really needed a good long break from this cml thing - and I mostly succeeded. It was interesting to realize that it was during our wait in Miami for the connection flight back to Atlanta, that that is when cml came back again, dates started running through my head and started feeling the need to catch up with everyone and the latest cml news. I am so incredibly fortunate that Steven is doing so well that putting this all on hold was even possible.

During my catch up after we got home, I found this blog entry on Matt's Blog. It's about approaching a stranger who obviously has cancer, even though you don't know them. Under what circumstances is it right? When we were on the ship in the Galapagos Islands..... well, this is my latest experience on that subject........ I overheard a small group of people discussing a lady who had just joined the ship - she had had her last cancer treatment on the Monday and here it was Wednesday and she was on board for a vacation. They debated whether it was right for her to do this, whether she was wise or sensible and how to react to her. In all honesty, maybe I would have been one of them a good many years ago, but these past few years had taught me some lessons and now I was slightly ticked off at this discussion.

It was not long before a tall, elegant lady caught my attention - she had the most glorious smile, was tall and her eyes twinkled. She seemed to ooze life and laughter and everyone around her broke into smiles as she almost bounced along the deck. And then she removed her cap, running her hand over her bald head as if she still had a full head of hair. This was her.

Oooooh, my feet started tapping as they wanted to go over to her and say something - anything. To tell her that......well, that I see that she had/has cancer and that........ what? WHAT?? She knows what she has/had........ did she really need me to come and tell her my version of what I saw in such a short time while she was on a probably much needed vacation to one of the most wonderful spots in the world? Did she need my sympathy or 'understanding'? Did she need to hear the story of Steven and how I deal with it? Did she? Nope... Not at all.

I am so incredibly grateful that I sat on my feet and put cottonwool in my mouth for the next couple of days. And then one morning, I found myself sitting next to this bubbly, bouncing, vibrant lady with the never-ending smile, on a the edge of a small inflateable dingy on the way to one of the islands, and we laughed and chatted and laughed some more at some stupid fish jumping out of the water right into the beaks of the swirling masses of birds above. She was funny, interesting and having a great time out on the water and we really had a good and fun ride. After that we spoke a good many times, laughing, sharing what we had seen during the day and just enjoying the islands.

We did not share any personal information, not even our names, until it was time to leave the ship. She had a calendar that the crew had given her and she was laughing because it was a 2009 calendar and well, the year is almost over! I called her "Calendar Girl", she laughed and said that her name is Laura and we hugged both hello and goodbye. The last I saw of her was when I called after her disappearing figure at the airport, "bye bye, Calendar Girl!" and her tinkling laughter trickled around the corner back to me...... still makes me smile.

Well Laura, you taught me something. You taught me, as a good few other have too, that cancer is not the main part of any person by a very long way. Your character happened first, your smile, that twinkle in your eye and your zest for life. Cancer is just a small part of you - small enough that it was hidden by all the rest of your lovely personality. You taught me that even though I have 'a story', your privacy is more important and that by respecting that, I gained so much. I saw a part of you..... a wonderful part. Thank you!

I have also learned that I can and do see past cancer to the whole person. This is something I never thought could happen so easily. I know I do this with Steven and some of my internet friends...... he is doing well enough that cml really is not the first thing I think of when I see or think of him. Even my Robo-scan has become lazy and I really see my son first and foremost - just as it should be. But it was a really good surprise that I can and did do this with someone that I literally just met and who's side effects of the treatment were very obvious. I love knowing that I have grown enough that I am no longer part of that group wondering how to react to someone who has cancer.

And just a day or two after getting home, it was time for the PCR test kit to be ordered again. Sigh. It arrived, Steven's blood drawn again on Thursday last week and now for the wait again. I have been catching up, as I said, with some of the people I follow and one that really has my attention is Hans' Blog. Both Gleevec and Sprycel have stopped working for Hans due to the T315 mutation, and he is off onto a trial and hopefully going to be able to avoid a transplant. The wonderful news is that he has a sibling match which is just great! Visit his blog and send him wishes and hopes... All the best Hans - I will be waiting to celebrate great results with you all!

Now I know that everything is going well with Steven, but what would one of my blogs be without a good foot stomping from me? Maybe it's because of that pcr kit and the waiting, maybe its........ well...... Here it is. I don't want Steven to have a 'good few other medications' to fall back on if Gleevec stops working..... I don't want him to have to go to trials, or to have a perfect match for him if he has to go to transplant one day (well of COURSE I do want all these!) But I want him to just be ok the way its going! I want him to never have to worry again, I never want to worry about how I would deal with him having to change his medications and deal with new parameters, tests and side effects. I want to see this burden lifted from him and Laura and I want the road to be smooth from here on out. I want to stomp my feet in a hissy fit and absolutely insist that this child of mine (and my girls) be absolutely ok.

There is so much beauty in the world, there is so much good...... may you all be at the end of a rainbow....

love and light

Annie

Dealing with it.....

2009-09-17T21:59:00.007-05:00

I guess the best thing about not updating the blog is that there really is nothing going on that finds me desperately pounding on the keyboard late at night. But there have been many general thoughts swirling through my mind over the past weeks.

A good friend of mine was recently diagnosed with cancer and another died from cancer just last weekend and it makes me so sad, so incredibly sad. It's not only the loss of my friend from Florida that makes me sad, but that another person has now started down a road where everything changes, all the way to the words, vocabulary, abbreviations and even the disliking/liking of a certain shade of pink!

Almut, my Florida friend, wanted to be quiet, to withdraw while she learned to deal with her diagnosis. She needed to turn her strength inwards and hoped so hard to get better that by the time she went to hospice, we could not say goodbye - she could not speak on the phone anymore. I hope she knows that she brightened my days, made me laugh, made me mad, made me think about so many things and that I will always remember her with a smile.

And all of this brings me to realize (again - duh!) that there is nothing I can do about living or dying, there is nothing I can do that will stop any of this happening and it seems to be happening more and more. It was just a very few years ago that I could literally count the people that were important in my life that I knew who had died, on the fingers on one hand. Now it's all around me and it's all too regular that the tears flow from the death of someone else.

Yes, it's difficult - but even more so, its strengthened me. It's opened my eyes and made me see the absolute importance of living each day the very best we can. Not to waste too many moments in life - there just are not that many, after all. It's made me free to cry with joy at a wonderful story of success, of someone getting through treatment and getting on with life. It's made me see that no matter what I do, say or feel, someone else will die, will be diagnosed and will walk the long road of cancer.

It's made me see the importance of telling those close to you how you enjoy their company, their laughter, the ways they lighten my load and brighten my days. It's made me love more openly and laugh all the way from my toes. It makes me realize on a daily basis, just how fortunate I am on so very many levels.

This is life. Does that sound hard? Probably, but it is..... we cannot have life without death, no matter how much it hurts. I consider myself really, really fortunate...... my whole family is still here, Steven is doing well on Gleevec and I am able to step back and "take a break" from cancer, unlike all those dealing with it.

Of course I worry about Steven, but its nothing like it was even 2 years ago. Of course I am deeply affected by the loss of my friends and the children of the other moms I talk to.... I am also affected by the great strength of everyone I have met dealing with cancer, whether they are still here or not. It literally brightens my day to hear the great results of so many people, by their successes and their strength in getting themselves restarted in their lives and all the things they go through to get through each day... and all this fills me with the ability to live my life on a much deeper level than I ever imagined.

And so........in just a few days time, we leave for South America for one fantastic vacation and I will not be posting here for about a month. To follow our trip, click here: http://www.GalapagoBaggs.blogspot.com. So many of you will be coming with me in my heart and my mind and I will send many prayers, wishes and happy vibes out over the ocean for you all.

love and light

Annie

Going to be Grannie Annie again :)

2009-08-22T23:22:00.002-05:00

My daughter is expecting another child later this year and to help keep track of the days, I have put a widget on the right side of this blog that will count down the days till his arrival. Yup, it's a boy this time..... poor thing in a house full of girls! And Lisa and Brian have decided to name him Steven William.... Awesome, hey?

Anyway - that's the news for tonight.

love and light

Annie

like a pistol...

2009-08-22T09:40:00.003-05:00

The results are 0.22% on the International Scale. This is slightly higher than the last pcr, but lower than this time last year - so all is good :) Steven's doctor recommended no change at all so now its time to kick back, relax and just enjoy life with this worry, once again, gone for now.

It felt like an extraordinarily long wait this time and the time is almost here again to order that kit from OHSU again. Sometimes I just get so tired of it - and then the moment passes and I realize just how incredibly lucky, fortunate, blessed I am.

Steven is looking good, sounding good, and is going to gym on a regular basis too. His life is everything it could have been without cml. I know that on many levels he has grown beyond what he would have if he did not have leukemia and for this I am grateful, even though obviously I wish he did not have it. Our lives are all so good despite, and perhaps because of, cml as part of it.

So now I can get ready for our trip next month with a lighter heart. I realize how much depends on those results every few months. It's not like we put our life on hold, but the "what if" factor is definitely more often visited when it' waiting time.

Thanks to everyone who waits with me, I know I am not alone in wanting those results and it really does count a lot to know that you are right here with me.

Love and light

Annie

Tomorrow.........

2009-08-19T21:40:00.001-05:00

Tomorrow the looooooooooong wait will be over.... breathe in, breathe out....

Goodbye Nick......

2009-08-14T13:10:00.007-05:00

I am so sad today - Nick passed away yesterday. His mom, Diane, writes a beautiful but heart rending blog that so many times has made me laugh and cry at the same time. Today it was just tears as I read her words from late last night. Nick is finally free. But his death has obviously left a devastating path...

I cannot begin to even imagine the pain they are all going through and will be going through for a very long time. Just thinking about thinking about that makes me want to bawl all over again.

Diane, I am so incredibly sorry that you no longer have Nick where you can reach out and hold him, talk to him and see his smile and hear his voice. I am so sorry that you have this horrendous pain to deal with. I am so sorry that there is not a single thing anyone can do or say that will help make your pain go away or become less. There is no other mom that is going through exactly what you are going through right now and that must be an awfully lonely place in so many ways. There are so many of us who have been touched by your words and your battle and of course, Nick, that are holding you and your shattered heart in our hearts.

My deepest sympathies go to you and your family and to Kate.

So many things go through my mind when I hear sad news like today. Although Nick was leukemia free when he died, it is still because of the disease that he died..... and that makes me angry, sad and very very scared. I do know that each and every one of us is going to die and I know that it can happen for many different reasons and at any age, but - well, I don't like the fact that my eldest child has an elevated chance of it happening sooner because of this disease. This is also not quite accurate anymore what with Gleevec and the other meds and advances in treating cml....... but that does not really help much on days like this.

There is a program on tv now with Niel Diamond and all his lovely old songs and it takes me back, waaaaay back, to days where everything was so simple, nothing could hurt us, we were invincible and well stuff like cancer just did not feature in our lives. Oh how I miss those days on a day like today.

And earlier on this morning I went to see my doc (something really minor) and as I walked up to the building doors, I realized that I was only one arms length away from Steven's doctor - and his results!! My heart actually skipped a beat. Oh boy, you should have heard the high speed conversations - both sides - that went on in my head in a matter of seconds! But, I walked past with only one small stumble... and a whole lot more temptation than I had been handed in many years. When I came out again I knew that I had better be distracted or the temptation might just get too much, so I called my sister - thanks Katie! And again I walked past that door less than 6 feet away.

I have to leave this to Steven. I have to. I do have permission to get his results, but that would be undermining him, especially if I had got those results without asking him specifically. And tomorrow he will be working with us again all day long..

I am SO incredibly fortunate. Tears running down my face again for Nick and his family and I am worried about being able to control myself while I have my son all day long!? It's difficult to try to understand why I am so broken up about someone I never met, but its real, its scary and I feel so much for his mom without even coming close to understanding her pain.

I think today's world has very little to do with understanding much of anything.... I think it's more and more about just living with every fiber that one has for as long as we can and then to just believe that there is something more afterwards.... Trying to understand seems to bring about more questions, more sadness and more unknowns and definitely does nothing for peace of mind at all.

Nick, may you dance in the freedom from pain and hospital rooms, may you see everything you still want to see and may you know how much you were and are loved by so many..... You are definitely missed, even by someone who never knew you.

A special dose of love and light to Nick's family and friends - and especially Diane.

Annie

I did it!

2009-08-08T22:19:00.003-05:00

I did it............ success! Not a word, not a hint.......... It was lovely having Steven with us all day, but boy it was long sometimes with those conversations in my head and the subtle taste of blood in my mouth as I literally bit my tongue later this afternoon.... but it feels so good to have succeeded...

Phew

love and light

Annie

Hanging in there........

2009-08-07T22:22:00.004-05:00

No PCR results yet......

This time around I am leaving it up to Steven to call. Up to now I have always jumped in there first, taking that away from him, keen to get those results as soon as possible. This time I have decided to leave it in his hands. Totally. Aaaaarrrrggghhhh. His doctor's appointment is mid August - I dont even know the exact date! I will not ask him to call, will not remind him to call, will not even HINT that he should/could do either..

The conversations in my head get very interesting at times..... time and time again a little voice almost convinces me that its ok to let slip in some 'innocent' way, to remind him to call, I have had very 'casual' conversations in my head with Laura, trying to find out if he will call or just wait till his appointment...... and so far, I have not yet given in. One side of me would do anything to get those results and the other side will do anything plus more to be able to leave it up to him.

He is working with us again tomorrow and its going to be a long day with much tongue and cheek biting to stop that question....but I am determined! Wish me luck!

Drop in on Nick and send him some good healing vibes and a note as well - he is fighting hard against many things right now and can do with all the well wishes possible - all of them can.

Have a great weekend

love and light

Annie