Once again we sat behind a thick wooden door and heard the ringing in our ears followed by cheering and clapping.

We’re so excited for and thankful that the courageous kiddo completed treatment and yet…my heart always sinks because next I hear the question,

“Mom, when will I get to ring the bell?”

Which translates to:

• “Mom, when can I stop taking all these medicines?”
• “Mom, when can I start being just a kid again?”
• “Mom, when will my brain tumor be gone?

And my answer…

“I’m not sure sweetheart.”

Then comes the look of disappointment. Almost despair. And then the girl with a heart of gold and the courage of a lion shares,

“Oh…Well, I’m happy they don’t have to come to the hospital anymore and that they’re feeling better!”

My internal conversation ends with “I hate that damn bell.”

Traditionally the ringing of the Cancer Survivor’s Bell marks end of treatment for the patient.

My 13 year-old daughter has been enduring since her diagnosis at seven with hydrocephalus and a low grade brain tumor in the third ventricle of her brain.

She’s endured shunt (re)placements, biopsies, cyst fenestrations, MRI’s, several chemotherapy infusion protocols spanning two-years, a partial tumor resection with a 26-day hospital stay and now twice daily oral chemo – not to mention all the neuro-oncology clinic, OT, PT, speech and specialty clinic appointments.

Again, we love hearing the bell ring for our courageous clinic friends AND my heart breaks each time.

Her treatment is a marathon managing the tumor until (if) it decides to fizzle out in her young adult years or medical advances find a way to vanquish it.

For now we’re told it’s unlikely to go away so we pray for stable and hope for shrinking with each treatment plan. The miracles we call neurosurgeons take tiny bits of it if the risk of surgery is less than the risk of leaving the tumor to its own devices,  crowding precious real estate in her brain.

Still I wonder what to do about that bell?

In an online parent support group someone posted about a Cancer Survivor’s Bell ornament in case anyone wanted a personal one.

The inscription reads the same as the plaque found in clinic:

“I fought.

I endured.

I ring the bell in CELEBRATION.”

A former clinic nurse commented how the bell is meant to mark all milestones with celebration – not just completion of treatment. For example, maybe a child undergoes sedated MRI’s and then a year later tolerates simply watching a movie and holding still…they can ring the bell.

I’m grateful that she reframed the meaning of ringing the bell for celebrations big and small not just the end of treatment. Because we’re not sure when my sweet girl’s will be and she has already conquered so much!

My daughter received her personal bell on New Year’s Eve, the one-year anniversary of her partial brain tumor resection.

She rang the bell with a smile on her face as we sat around the dinner table and discretely wiped our eyes.

Do you only celebrate the major milestones and accomplishments in your life? Why?