Sunday, March 28, 2010

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

Tuesday, March 23, 2010

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!

Monday, March 22, 2010

Saturday, March 20, 2010

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

Thursday, March 11, 2010

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
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.

Tuesday, March 09, 2010

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

Friday, March 05, 2010

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 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