The bell

Yesterday I witnessed a fellow ependy child ring the bell at MGH.  A child whose mother I have "known" virtually for a little over a year.  We are both part of an online/email support group for parents of children diagnosed with Ependymoma.

It was a bittersweet moment, full of pride, anticipation, excitement and yet overshadowed by fear.  At least in the confines of daily radiation, our children are being watched closely.  As parents, we take comfort believing that if something were amiss, these trained professionals would catch it before we would.  However, without the dreaded MRI, no one can say for certain that there is nothing growing in our child's body that shouldn't be there.  Unless your child has become symptomatic, which as parents we would certainly notice before medical staff, there would be no cause for suspicion.  And yet, even without the MRI as evidence, we breath a little easier knowing that smarter people are closely observing our children each day while here.

Once you ring that bell, it's another story.  The weight transfers almost immediately back onto the already sagging shoulders of Mom and Dad.  The knot in our stomach grows tighter and tighter as we get further and further from the watchful eyes of the medical staff.  I thought I was ambivalent about Cam's bell ringing in a few weeks.  That was until I watched Stephanie yesterday. 

Stephanie is an amazing, sweet, incredibly bright and VERY brave 6 year old girl.  She is the one I mentioned on Facebook a few weeks ago that did all of her radiation treatments without anesthesia.  She then taught another 6 year old girl to do the very same thing.  Wow.  They are just awe-inspring.

As I watched Stephanie, my eyes filled with tears, as they did nearly two years ago when I watched our buddy Jaxson ring the bell - the first pediatric bell ringing I witnessed - and as they did at my own child's first bell ringing.  For weeks, I just have not felt this same way.  Perhaps it's fear getting the best of me; perhaps wanting to stay on my own little Island of Denial; perhaps it's pessimism.  Last time, the bell ringing seemed like closure.  It was the end of a very ugly Chapter in our life.  This time, we are still in the middle of it and will be for many more months.  I know that radiation is probably the easiest time Campbell will have for the next year.  Maybe that's why I don't feel the hope the bell ringing promised me last time.  Maybe I think it lied.

Even with the lies, I will continue to pray for good news.  I can't NOT pray for good news.  That would be defeatist.

Stephanie is also a "odd" Ependymoma case.  Odd in that her tumor decided to grow in an unusal location, much like my Cam's.  Stephie's grew on the top of head, and decided to come back twice in that area.  Cam's first one was in the typical Ependymoma location (Posterior Fossa/4th ventricle - at the lower back of the brain), and her recurrence moved to her spine.  Ependymoma's favor the Posterior Fossa and if they come back, they usually do so in the original location.  In the last few weeks, I've often talked about Cam and Stephie being the "oddballs" who just had to be different.  Tonight I pray that they will continue to be different, that they will defy the odds; that their Cancer does not come back again; that we will see each other each year back in Boston for the annual check-up with Radiation Oncology.  It was a blessing to meet Stephanie, her sister and her mother.  Her mother who was a rock and made their 8 week stay in Boston a little vacation with pit-stops at MGH each day.  Theresa inspires me.

I am pouring a glass of wine right now, and toasting Stephie and her family.  Here's to many, many, many years of NED scans!