Friday, May 29, 2009

The honeymooners are back!

Has it been two weeks already since Steven and Laura tied the knot?  Wow......  Thinking about that wonderful day still brings a smile to my face, and yes, I have spent endless happy hours sorting through the 13oo photos I took and printing many of them.  If you want to see more photos - go here:

 This day meant so much to me.... Seeing Laura walking down that pathway to join with the young man who could not take his eyes off her, was just incredible.  Yes, there were tears, but I did not want them to take over, so up came the camera and I clicked away all through the ceremony.  I have developed the knack of being able to see life happening while pointing the camera in the right direction, so I did not miss out on the moment nor limit myself to seeing it all through the lens only.  

The love and happiness and peace that both Steven and Laura exuded was lovely - it shone through their eyes, the way they held hands, the leaning in towards each other, the look in their eyes........  Their deep happiness was undeniable and totally wonderful.

And I only thought of cml once and that was when I thought that it was quite amazing that I had not thought of cml at all!  How's that?!  Looking at the photographs of me, I was really thrilled that my leukemia bracelet was not there with us all.... that it was still happily parked at home in a folder filled with other items from the previous 3 years.

Steven and Laura had a wonderful honeymoon - they went on a cruise to the West Caribbean and looked so relaxed and unstressed when they got back.  Now its all back to dealing with life without all the planning and promise of a lovely party and vacation ahead.  I laughed at Steven already cutting the lawn and fighting with the weedeater....   I bet that in some ways it already feels as if the past two weeks are fading into history.

Oh yes, they missed the flight to Miami for the honeymoon cruise, so we quickly got them another flight that got them to the boat with minutes to spare.... but then when they tried coming back again, they found that Delta had cancelled their return flight!  Apparently Delta cancelled the return leg because the first leg of the trip was unused.  That is just not right - they had that ticket fully paid for and had to buy new tickets to get back home.  They ended up on the same flight, at double the cost.  Something stinks and Delta is going to hear about it!

I really take my hat off to both these young people.  They love each other, stand by each other - no matter what!  Yes, there will be tough times, there have been already with the cml, but they just seem to get stronger and more determined to get ahead, to live, love and to enjoy.

In just a few months Laura starts night school in addition to her full day job and the challenges of fixing odd things around the house and garden start for the first time for them in their own home.

There are times since the wedding that I have felt a bit wobbly - tearful even.  Maybe it's because I am so incredibly grateful that the horrible feelings and fears I had just over three years ago are just not that intense anymore.  While printing and framing a couple of photos again today, I sent yet another set of deeply sincere thanks to Dr Druker.  Where would we be without all his work and dedication?  

This has been one truly beautiful year.  Baja trip, Steven and Laura buying a house and getting married, good pcr results, another grandbaby on the way and my youngest daughter moving back to TN.  Sadly this is because her husband is going to Afghanistan later this year, but we get her for about a year!

I am so grateful, so grateful for so many things....

Oh - and here's something else I am grateful for - Lea!  Go and read her latest blog on Glamour here.

It's quite amazing to me that even though cancer brings so much devastation it also brings out the most awesome people.  Any blog you read, you will find people responding, holding hands, encouraging or crying with someone...  It is honestly a whole new world.

Also, visit Diane's blog - I love her style of writing, she really nails those feelings on the head, makes one feel her pain and at the same time I find a chuckle bubbling out of me - she has a lovely way of making words jump to life.  Nick, her son, can definitely do with any and all extra thoughts, prayers and encouragement.    Diane also has some lovely music playing on her blog.

My life is so filled with wonderful people - thanks to each and every one of you!

love and light

Saturday, May 16, 2009

Before the wedding.....

When Steven was first diagnosed I put on one of those bright red 'Relentless' bracelets that the Leukemia Society sells.  And it became so much a part of me that I hardly ever noticed it at all.  It faded gently from bright red to almost skin tone, blending in with everything I wear - kind of like cml did in our lives.  

But now that Steven's wedding is almost here, I started wondering about taking it off for the big day - not wanting to bring cml to this day in this manner.  It was Wednesday that I first thought of taking it off, but somehow it did not feel right and so it stayed.  During the day on Thursday my mind pondered the issue, but again it was not strong enough to do anything about it..

On Friday morning it gently broke apart and lay on the couch, finally off my arm.  The fear of leukemia has largely faded from where it was initially and now it wont be in all the pictures either, just as the color of the bracelet faded.

It's good.  It seems to me as if it was just not meant to be with me today..... good! 

What a day its going to be - I promise pictures - soon!

love and light

Thursday, May 14, 2009

Pure giving...

I was sent this short clip in an email earlier this week..... and it's stuck with me - so now you get it too..
love and light

Sunday, May 10, 2009

Another Award for Dr Druker!

European Inventor of the Year 2009 in the category "Industry"

Chronic myelogenous leukaemia (CML) was long-considered one of the deadliest forms of cancer, capable of striking at any time, causing extreme pain and worse still, affecting both adults and young children. Before the work of two pioneering medical researchers, a diagnosis of CML and subsequent attempts at treatment guaranteed prolonged pain and no certainty of remission. But now with Glivec, a cancer fighting drug with a 98 percent remission rate, CML has lost much of its former bite thanks to American oncologist Brian Druker and Swiss medicinal chemist Jürg Zimmermann.

At a glance

Inventor(s): Jürg Zimmerman, Brian Druker

Invention: CML Treatment (marketed as Glivec)

Sector: Healthcare

Company: Novartis

In 1960, researchers identified an abnormally short chromosome in 95% of patients with CML, which they named the Philadelphia chromosome. Understanding the phenomenon of the Philadelphia chromosome was seen as the key to curing CML. After another 13 years of research, it was discovered that the Philadelphia chromosome is the result of two chromosomes swapping DNA.

By the early 1980s, researchers demonstrated that the DNA swap resulted in a fusion protein (the product of two genes or proteins joining together) called BCR-ABL. BCR-ABL causes the overproduction of white blood cells in the body. Where healthy blood contains 4,000 to 10,000 white cells per cubic millimetre, blood from a CML patient contains 10 to 25 times this amount.

In 1990, researchers began looking for BCR-ABL inhibitors and at Novartis, a phamaceutical company based in Switzerland, scientist developed a compound designed to reduce BCR-ABL. Jürg Zimmermann and his team set about improving the compound, eventually creating a potent and specific BCR-ABL inhibitor.

In 1994, Novartis teamed with Brian Druker and set about refining and readying the inhibitor for clinical trials that began in 1999. Today, the compound now known as Glivec is being hailed as something of a wonder drug. Follow-up data show that Glivec therapy helped 98% of patients in chronic-phase CML stabilise their blood counts.

Moreover, in 92 percent of cases, the Philadelphia chromosome was completely disabled, though still present. Patients treated with Glivec followed by a bone marrow transplant, a common course of treatment for CML, experienced a cure rate of 60-80%. Side effects of Glivec tend to be mild and easily manageable, with less than 5% of patients experiencing serious adverse effects.

Thanks to the Zimmermann-Druker partnership, the resources at powerhouses like Novartis and the tireless work of other medical researchers, it seems suddenly possible that a cure for cancer may indeed be found in our lifetime.

This is incredible hope!  I hold on to it every day even though Steven is doing so very well.  I am absolutely thrilled by Dr Druker's dedication to finding a cure for CML.  It humbles me tremendously to think that every hour he is thinking about or working on the cure, he is doing this for my kid.  I really don't know that there are enough ways to thank this man.

This was an perfect article for me to find and read today, on Mother's Day.  Apart from all the flowers, chocolates, cards and phone calls from my three chickens and others - this added that extra light.  

I hope all mothers had a wonderful day, felt treasured and loved and appreciated.  I certainly did.

love and light, 


Thursday, May 07, 2009

Results and things....

Time flies and so many things are going on right now - all good.. but I am only getting to posting Steven's PCR results now - almost a week after they came in!  Amazing how time changes things.

This time the numbers are slightly higher.....and I don't know if it's because I have this eternal knowledge that he is going to be fine, or whether it's because it's really not a big deal, but I really did not become 'frilly' about it at all.  Even the wait for these results have been easier than all the others.

In January the numbers were 0.039% (0.14 IS) and this time they are 0.049% (0.18 IS).  

I actually expected the slight rise as I have seen that when Steven has been more stressed, his PCR has always hopped slightly upwards.  I might be imagining this, but it seems as if stress does have an effect. He has had buying a house, moving, their fast approaching wedding and honeymoon as well as a good amount of parting with many dollars over all of these things.

Most of us would definitely have stress over any one of these, so I am almost surprised that the numbers are not higher.  I am SO glad they are not, though.  Now is not the time at all to worry with the wedding just over a week away and a lovely cruise to enjoy.

I am so excited about their wedding - everything is in place and I just know the day is going to be totally wonderful.

Little Miss Laura is one lovely young lady, not just in her looks but her personality and determination to get ahead in life.  She has been accepted into nursing school and in the new school year will be going to night classes as well as holding a full time job.  Before Steven was diagnosed with cml I thought she was great - now I honestly feel that she is much, much better than great - she is one seriously special lady - and of course, a perfect match for Steven. :)  

Here is a young lady who fell in love with a young man - with an expectation of a good many carefree years ahead.  Right as they started getting really serious about each other the cml bomb dropped.  Did she run?  Nope. Did she hide or fall apart?  Nope.  She stood up and faced it all and incorporated it into her daily life.  I know that it's tough on her sometimes and I know that there are many times when its just easier for her not to think about the leukemia at all and go on 'as normal'.  But she deals with it as part of the bundle that is Steven.  She deals with it with grace, love and responsibility as well as a good dollop of humor.

Laura is such an incredible help to my peace of mind.  I know that she is right next to Steven in the treatment of the cml.  I know that she occasionally has to nudge him re his Gleevec and is supportive and understanding of the tiredness and other minor side effects Steven has.  Even though its got to be quite an adjustment and a constant reminder that their lives are not as carefree as any of their friends' lives, never will be, Laura is firm in her vision and determination of a good and full life together.   I wish I could explain just how deeply this impresses the heck out of me. 

I know that there are many people out there dealing with things much more critical than this cml in Steven, but - and this is a big but - this is "our drama" and Laura is the closest to it apart from Steven, of course.  And in my mind and heart I know that this is one really special young lady.  I can not imagine how it would have been with someone less supportive and conciencious
and willing to keep me informed, not only about Steven, but importantly - her own feelings on this.

I am obviously very proud of all my children and children-in-law, and am absolutely thrilled to soon be officially adding Laura to my brood.

Laura I love you, always will and I thank you deeply.

love and light