Daily Archives: March 4, 2013

new circles

Last summer:  I have this ziploc bag full of two and a half inch squares in various colors.  Sage greens and pale yellows, darker greens and charcoal grays.  I cut those squares out of large sheets of paper last summer, and gave them to a dear friend for a project she was working on.  She was planning a group art project for a portion of a big survivorship event, and she wanted some help with it from me.

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Early fall:  It was a gorgeous fall morning a few weeks later when many children and their parents and extended families showed up at the event.  We watched the kids select a colored square, press a finger or thumb into a colored ink pad, and press their print onto the paper.  They turned the prints into animals or people, and they signed their names.  Underneath their names they wrote a number.  5 years out!  3 years out!  6 months out!  And then one would write “Still fighting!” with an exclamation point, and I would wonder how my friend could do her job, day in and day out, surrounded by these children fighting battles far bigger than these little thumbprints or squares of paper could ever represent.  I need to put these squares together into a larger quilt of paper pieces, and slide the finished work into a frame.  It will hang in the newly renovated space this fall where new patients just like my niece enter into another circle of doctors and nurses and support staff and researchers and insurance coordinators and paper pushers and friends on the same journey that she is on.  It feels like a parallel universe that we don’t even know is there until one of our own is called inside.  I wish that I had already put this survivor quilt together.  I’m glad that I haven’t.  It will be hard to do now.  It will be helpful to do now.  I don’t know how to feel or how to react or how to help.  I was honored to meet this club.  I didn’t want to join it.

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Late fall:  We receive a letter in the mail from the former nursery worker at our church, a graduate student that F simply adored.  She has moved on to even further ranks of post-graduate study in fields that we don’t even know how to pronounce.  She’s in Los Angeles, and she is training to run a marathon there.  Her letter is asking for support in her endeavor – particularly financial support.  She’s raising money for cancer research, and I write the check and fill out the form.  I get to the line that asks for a name.  Who is she running for?  Who’s name is going to get her through mile 21 and into mile 22?  I write my aunt’s name, the same name as my daughter.  I write a short note wishing her good luck, in her training and in her doctoral work.  I think of my aunt who battled and beat one type of cancer, and the bitter irony that the treatment gave her another form that she couldn’t beat.  I am so glad that we chose her name for our daughter, except for the hour that was her funeral when I listened to the repeating of her name and couldn’t separate it from my little one.  It is still one of the most beautiful names to me.

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Early winter:  My office manager sent an email out to everyone in the office.  One of her closest friends from high school was battling leukemia, and they had exhausted all treatment options.  Her only hope was a bone marrow transplant.  She had three small children at home, and she was so ill that she couldn’t even be around them anymore.  Her family was sponsoring a donor drive to encourage friends and family to sign up.  I read the email and there was something in me that couldn’t push it aside.  I don’t know her, I’m so busy, seems risky, expensive, hard, scary.  I can easily pull an excuse and reason to not do just about anything, but I couldn’t do it in this case.  The drive was in the basement of a church a few blocks from E’s soccer practice that evening.  I left the soccer field with F and drove a few streets over, parked the car, and followed the balloons inside.  Four table stations later I had filled out forms, swabbed cheeks and been tearfully hugged.  F had laid waste to the cupcakes a church member had brought to the event.  While I waited for my turn to swab my cheek I watched the ladies helping F with another cupcake.  I was there for this mother, and for a family so desperate to make her well.  A few weeks later a match was found, and she is doing well.  We knew that it likely wouldn’t be from our little group in that church basement, but I’m sure it was in a church basement somewhere else.  I say a quick prayer as I leave that if we ever need it, someone somewhere will go into a basement, and someone somewhere will spend the afternoon making cupcakes, and someone somewhere will buy the balloons and make the signs and hug those that turn out, and that another family will have hope where there was none before.

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Late winter:  And now we are here, and our family enters these new circles that are unfamiliar.  My friend, the one organizing the survivor artwork, the sort of friend you want to help you through all of the hard times, knows these circles so, so well and she writes us letters that calm our fears.  These circles are new to us, but they are not new circles.  They are circles of precedent and research and best practices.  They are circles of coordination between doctors and scientists and nurses and administrators and counselors and clergy and family members and friends and other survivors.  These are strong circles because of those extraordinary people like my friend and the work that she does, extraordinary people that run marathons and write long form thank you notes for our tiny donations, for cupcake makers and cheek swabbers in church basements, and for parents that have to be stronger than they thought they could be or should have to be.  The earth will fully circle the sun, and we will hope for a late summer day when the hard work is over and the future looks bright and strong again.  I want to respect the privacy of my niece, but I’m so thankful for your notes and emails and calls and thoughts and prayers.  Please consider joining this circle yourself at Be The Match and at the Leukemia and Lymphoma Society.