Thursday, April 30, 2015

Another Bright Light is going To Go Out....

I somehow connected to this family a couple of years ago.  Their daughter Emily was inflicted with the same Lymphoma as my friend Trisha.  Unfortunately Emily has relapsed again. This family has been on fire.  They have had every buildings in Chicago lit up with Green and Purple, Emily has been at the Police Headquarters, heck she even had a call from Taylor Swift. Emily is squeezing every single moment of life dry.  As we all cry inside for this impending loss. 

 I hate to feel like I only have sad stories to share.  I don't want to be that person but some it is such a big part of being a Cancer Mom.  Knowing we have to be there even during the losses.   
Say an extra pray for peace and painless days.  Light a candle.  Hug your kid.  Forgive your irritating neighbor. Smile at the homeless guy.  (Still feel free to kick the smokers) 

Sorry I haven't updated in a while. It's hard to come up with words when I feel so empty inside.
Emily has been having some good days. She hates radiation, but she has to go for pain management. She has about another week left. Thank God the pain finally subsided. They put her on Methadone. At first, she was miserable. Not only was she in pain, she was very mean. I don't know if it was the pain, or the getting use to the pain meds. Our Emily came back last weekend. She is only functioning on one lung, her left one. She gets up to brush her teeth and after she has to sit down and have some oxygen. What 12 year old should get tired and winded brushing her teeth? I don't know how we are suppose to do this? Looking at her beautiful eyes, her beautiful smile, her little buck teeth. I just can't imagine a world without all those things. We all hurt so bad!!!! We are watching her deteriorate. How is this fair? When I say science has failed her, it really has. ALL our kids need and deserve much better than this. This makes me absolutely sick. Ed and I have been watching a PBS special that was on a few weeks back. It's hard for us to watch so we are getting through it slowly. The last part we watched they were speaking to the first Leukemia survivor. She was in treatment 50 years ago, they listed her medication and I wanted to scream! Emily was on all the same medications. In 50 years, NOTHING has changed. How is this ok? Things in pediatric research needs to change!!!!
Hospice has been coming, the nurse is very nice. Emily likes her. The other day we had to sit and go through the stages...... Emily is entering them. She is not really eating at all. I am told that I should not force her to eat, because her body doesn't know it's hungry, it's too busy trying to keep her breathing and her heart beating. How am I suppose to not make her eat? I feel like I am trapped in a nightmare and I can't wake up.
We are still trying to enjoy everyday for what it is. We will not cry in front of Emily, unless she is crying. Thank you for all your support, prayers, and love. Ed Beazley

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Tuesday, April 21, 2015

Cancer Moms

WE are Strong  and we are determined.  We are also very tired.   It was great to spend some time with my peeps.  It is amazing when I look at this picture.  Some have kids that have died. Some are trying to keep their children alive. Some have faced horrible decisions and struggled to return to normal.  We are so so thankful to have met and shared the journey with such powerful people.  

When I look at this picture, I realize there are bits of joy that leak out no matter what.  No matter how bad it has been and how hopeless it seems.  Joy wins.  

Sunday, April 19, 2015

Mixed Blessings

Oh dear.  Lovely lovely day in Seattle. 
Beautiful morning, nice breeze, calm seas, great people.  How could anyone be sad or upset? You Ask.  We were there to remember Katie Elliot.  Someone that left because of Childhood Cancer.  Someone that fought a good fight. Someone that spent her short 18 years squeezing as much out of life as she could.  

We met, we talked, we re-connected.  We supported the kids that have survived. We cried with the Mom's and Dad's with less successful stories. 

Katie will never be forgotten. 

Tuesday, April 14, 2015

Finally Getting Some Traction

And then the phone rang.  A voice asked if I was interested in doing an investigation in a Puget Sound School District.  And just like that, I was back in the land of  the grown ups. 

I sit here this evening with papers in files, notes to be reviewed, more questions to ask and soon there will be a report to write.  

Feels good.  While I have learned to adjust to almost anything, I really miss working.  It is good for the soul.  Hopefully there will be more of this work where it came from because if this becomes a real "gig" I might be able to fill in the Daruma that has been sitting in the window for a long long time.  

This feels so so good.  

So here is how this all works. 
Bodhidharma was a Buddhist monk who lived during the 5th/6th century AD. He is traditionally credited as the transmitter of Ch'an (Zen) to China. Little contemporary biographical information on Bodhidharma is extant, and subsequent accounts became layered with legend.[1] According to one tradition, Bodhidharma gained a reputation for, among other things, his practice of wall-gazing. Legend claims that he sat facing a wall in meditation for a period of nine years without moving, which caused his legs and arms to fall off from atrophy.[2] Another popular legend is that after falling asleep during his nine-year meditation he became angry with himself and cut off his eyelids to avoid ever falling asleep again.

So As I have been told, you make a wish or set a goal and color in an eye.  When the wish or goal is met you color in the other.   

I am so so close.