Monday, April 04, 2011

"How do you not have cancer?"

This was an amazing weekend, so much so that we didn't even get to everything we had planned - special shout out to Stephanie - we're so sorry we missed your shower, and want very badly to make it up to you!!! 

 This weekend really began over a week ago when, at our annual oncology/late effects follow-up at GUH Pediatric Cancer Clinic visit we discovered that some of the GUH med students were holding a St. Baldricks fundraiser, April 1, to benefit the Palliative Care Unit at the pediatric clinic.  Along with those who would shave their heads, they would also be set-up to donate hair to Locks of Love.  Over the coming weekend, Sophie and I had quite a few conversations about the possibility of donating her hair at the event.  This is her beloved hair that has grown, uncut, since she ended chemo in February 2007 - grown to below her waist.

After a particularly tedious evening removing a giant dred-lock from beneath her pretty curls, she decided to go ahead and take the plunge, make the cut, and donate her hair in honor of the Clinic and all that they have done for her over the years.  So, this past Friday afternoon, just after school, we loaded into the van and made our way downtown.  Shortly after arriving at the Georgetown student center, a crowd formed and Sophie was guided to a chair - they measured, and sized up the task, and then... they made the cut - not just one cut, but several to get through her thick mane.  It turned out that she donated close to 12 inches - although she admitted later she was quite embarrassed, she sat amid all of the people taking pictures and video and smiled pretty for the camera.  Me, Mike and her oncologist, Dr. Shad, were all in tears - keenly aware of the milestone that had just passed, and the significance of the moment having painstakingly lived through the initial loss of each strand and the renewal that new growth promised following treatment.  An extraordinary moment for us all.

The students and staff at Georgetown were so gracious and sweet to Sophie, Zach and us - doting on the kids and encouraging us throughout the process.  What a great day! Check out the St. Baldrick's event website if you would like to make a donation or just read about the event and organization.  This event raised over $17k for pediatric cancer research!

Zach has vowed to shave his head at next year's event.  Stay tuned as he will be doing some serious fundraising!  He'll have a page up at some point and we'll let you all know how to get involved!

After the log, but fruitful day, we celebrated out to dinner and then headed home to bed to prepare for the rest of the weekend.

Saturday morning we awoke much earlier than usual to prepare for Ben's Run. This run benefited Children's National Medical Center (CNMC), and was in honor of a schoolmate of the kid's, Ben Goldfogle.  in 2009, after fighting ALL and AML (both forms of leukemia) for over six years, Ben lost his battle.  A tribute to the strength of his family, and the support of the surrounding community, Ben's run had 875 human participants, and 40 canine friends running/walking a 5K or 1K course throughout the Stonegate community.  One of my BFFs from high school and her daughter drove up from southern MD and joined us for the great event.  We all did the 5k - some ran - the rest of us walked.  We all had fun, and really enjoyed the opportunity to support Ben, his family and CNMC.  Plan to join us next year - I've vowed to train to actually run the 5K next year - I'll need plenty of your support!

Following the run, we had some brunch and then rode out the downpour and following thunderstorms on the way home and in the house.  Kim and her daughter, Cecelia stayed all afternoon - this is where our conflict came in... we were supposed to go to Steph's bridal shower, but the afternoon got away from us, and we, regrettably missed it. Love you Steph - will make it up to you, promise!

The evening left us very tired... off to bed to move out again the following day.  Sunday we awoke to neglected chores for all of us then off to a cub scout pack meeting - geo-cacheing at Wheaton Regional Park - the boys went for a hike and Soph and I joined friends at the carosel and train.  Off to a long overdue trip to Costco and then home, just in time to grab some dinner and get to bed.  Wow, what a whirlwind.

So likely - if you've made it this far - you might be wondering about the title of this post.  It's kind of sums up how 'heavy' this weekend was for us all.  At Ben's Run, there was an opportunity to sign up for the bone marrow registry - a service that had given Ben and many others, hope during their battle.  While I was filling out the paperwork, Sophie started questioning me about the process.  "Can I be a donor?" she asked.  I explained that to be a donor, you have to over 18, and you can't have had cancer.  This was followed with one of the most poingnant questions of my life, "Mommy, how to you not have cancer?"  Wow, what a question.  Until that moment, I didn't really get what it must be like to be a childhood cancer patient/survivor.  I've always looked at her illness through a parents lens - empathetic to her perpsective, but never privvy to it.  Sophie has never really known a life without cancer.  It's simply all she knows.  Wow.

So, I have no words of wisdom for this, just admiration for my strong, beautiful little girl, and gratitude for all we have... cancer and all.  Peace.

Thursday, February 17, 2011

Found and exceptional village...

So, the title of this post is a little vague, and likely confusing.  As many of you who know me, my life and my blog story, our family has been blessed with two beautiful, wonderful, perfect children.  That said, they are still each wrought with issues and concerns, physical, emotional, and educational.  What we have been finding over the past year or so is that what we thought we knew about them and their differences are simply the tip of the proverbial iceberg.  We've come a long way already, but the road is long, and now we see it is winding as well.

So back to the title, well, last night, I sat in on a Parent 2 Parent meeting at our kid's school and round a village, a small one mind you, but a village nonetheless of Mom's struggling with the same paradigms our family struggle with every day.  Some have learned to navigate them, and shared their knowledge, and some are just beginning their journey. Young children, older kids, boys, girls, multiple children, multiple disorders - unbelievable.  I was brought to tears many time throughout the evening listening to their personal stories and relating them to my own.

So, now that I've found the village, what do I do?  Oddly I feel more isolated today than ever, even in knowing that there are others who have paved a path for their child and can provide help along our.  Others that have witnessed the same emotions.  Others who cry when they hear other's stories, and when they speak of their own children's struggles.  Kindred spirits, but still alone on our respective journey's and no path is the same. Our children are like snowflakes, multifaceted, no two are alike, and they drift through the air, sometime causing havoc, but always bringing a glint of a smile in their loveliness.

So my hope is that I can connect to the exceptional village that formed last evening. That somehow we can continue to connect, to share, to support each other and to work together to create an atmosphere that supports our exceptional children and leads them to their greatest potentials.

For all those still searching... Peace.