Tuesday, May 19, 2015

Emily is Gone

Another one... Another Loss.  It sometimes seems like a steady stream... She was a strong determined little girl. Her family was with her all the way..... Her family is exhausted and need lots of good energy sent their way.  Sometimes when I post these things people tell me they are sorry for my loss.  It is never about my loss... it is about the world's loss.  We all are less for what has happened here.  

Childhood Cancer is a tough one.  

Monday, May 18, 2015

Just Sent MEB to California for a Couple of Weeks ...... I am So So Lucky

As usual, this summer is not working out as I had anticipated.  Thought the child would be working in Spokane but as it happens, she is on a different kind of adventure.  Her summer is falling together with bits and pieces of this and that. 

Camp Sparkle for Gilda's Club will take two weeks.  It is a camp for kids that have had cancer somewhere in their lives.  Moms, Dads, Sibs... They spend a week doing healing things.  Fun things.  They all love Meb because she knows, she knows what it is to have cancer and to have lost friends to cancer. 

She is spending two weeks with her Uncle David, maybe more depending on how his summer goes.  She is going to get to work in the office with his great assistant Donna and learn the business side of things.  She is great at doing those sort of things and had lots of organizational skills. 

She wants to spend some time with her Grandma in Eugene.  Maybe for the Country Fair.... Maybe some time on the water somewhere in the Puget Sound,  Maybe some time in Central Washington with a metal lathe and some cutting torches,  Maybe.... The Summer is full of maybes... and Maybe that is okay. 

I decided yesterday that Maybe this is just a great gift from the Gods.  Maybe I we just need to settle an unusual summer,  one not dominated by BMT fears.  Maybe this is what it is supposed to be.  I just keep receiving notices and reading posts about kids that will not be spending the Summer with their Mom's.  

Our little world of Childhood Cancer is losing some bright futures right now. Young lives are winding down and people are just down right sad.  No other word for it.  Sad.  Emily seems to be done after cramming so much into her "life list".  This was the post this morning from her family.
We are losing our Emily. She is still paralyzed. I thought today would be the day, but this little girl is a fighter and came back to tell me how much she loved me, that I am the best mom that she could have asked for, and that she is so happy that she chose me to be her mom. She is not in pain anymore, but is struggling to breathe. Please pray that God brings her home to him, so she can dance in fields of flowers. And run and play with her friends Becca, Albert, and Sarah. And be greeted by my dad and her Nonna. This is heart wrenching to watch. As selfish as I want to be, I won't. I need God to answer my prayers!
This is a very personal time for us, I ask you please to respect our privacy. I have shared her for four years, i need this time for me. I am spending every second with my baby. It hurts so much to imagine that I will never have another hug or kiss from my girl. Or hear her say "mommy" the special way that she does. This hurts so damn bad. 

Enjoy every breath your child can take with ease.  

Sunday, May 10, 2015

Peeking out of the Rabbit Hole....

We are coming up on 11 years from the moment that Doctor Balter looked into Mary-Elizabeth's eyes.  Eleven....  People talk about water flowing down a stream or river and washing away the  pain and fear and despair.  After 11 years, I am sure I have seen these same water molecules more than one time. 

Running water is very healing.  It heals our souls and allows us to move forward.  It takes great efforts to stop water.  It will travel great distances and make amazing detours to get where it wants to go or must go.  Sort of like Cancer Moms.  We are pretty unstoppable. 

I spent the week-end with a bunch this week-end.  I was invited to join nine other women in an amazing house in Leavenworth.  We were taken care of in a wonderful way.  Laughter, Wine, Good Food, Quiet Time.  It's so weird to be able to walk into a room and not have to introduce yourself.  The very fact you are there is enough.  No on is "there" unless they have been through the entire process.  We are Moms of Cancer Kids.  We are the lucky ones and have kids that are still with us. 

I have been trying since the beginning of all of this to figure out how to heal. The entire process has been so difficult, time consuming, soul consuming.  In all the rush to keep Mary-Elizabeth alive and handle life, lots gets pushed aside.  I know people are just sick and tired of hearing me talk about being a Cancer Mom, other kids dying. All the struggles with Hospital food, insurance companies, medication side effects, cost of job loss, cost of unreimbursed medical stuff, everything.  It should be over, it should be done but I have not been able to put myself really back together.  

As I look back, I had started the process three and a half years ago when Relapse reared its ugly head. Things were starting to turn around.  I was flirting with maybe having a real life.  I was working on my weight.  I was paying attention to the new lines and wrinkles that had appeared and put some of the world back into perspective.   

I have been bashing around and trying to figure it all out.  A bit of escape, a bit of fun, a lot of miles on the car. Some pretty special times away.  Cruise to San Diego,  Time on a beach on Camano Island, time alone in my house, time..... but inmost cases I was still worried about someone or something.  There was always an element of care taking going on.  I was worried about the people with me or needed to do something for someone.  

The Leavenworth Retreat for Momcology was so different.  We were in a wonderful place but we had only one thing to do.  Be pampered.  Food, treats, massages, henna tattoos, quiet time.... I even tried Yoga.  It was so amazing.  Time and NO worries was the required activity.  Time with coffee on a deck and a bit of wine.  Some much needed retail therapy and time to process, listen, commiserate.  

Most of us have a strong support system.  People that made it possible for us to come out of this tornado with some semblance of a life.  They did our laundry, sent us money, fed us, brought us wine, cleaned up our back  yard and were on call for everything we were willing request.  It was remarkable.   But.....

There is something so healing to be with your  Peeps... Those that have walked that mile and been on the same journey.  We don't have to explain the anxiety, the fear, the anger, the disappointment, the loss of the certain well planned future of our children
.  We are freed up to speak and know we don't have to explain.   I came away in a completely different space.  As I packed my bags and combed my now curly hair, I felt restored and revived in a great way.  I felt encouraged and newly connected to those that spent the week-end with me.  

Let's be honest.  We need way more slumber parties.  The YaYa Sisterhood had much more content about the needs of women to help each other and we should pay more attention.

Time to spread the word about Momcology and work on making more retreats happen. 

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.