Online interview about this blog...

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

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 :)

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....

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.......

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

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..........

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

In the same boat.....

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.....

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.........

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!

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!!

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.........

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 :)

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.