Maddie's Fight - The New Normal

People talk about normal like it’s a thing.  It isn’t.  It’s the idea of a thing; an imaginary, relative, morphing concept we try to define by describing our routine.  Normal is subject to change without warning or regard for consequence.  It doesn’t care that you were used to its previous version; normal reinvents itself at its own discretion and it has no interest in whether or not you object.  We comfort ourselves by trying to embrace its irreverence.  When thing go awry, we say we are adjusting to our ‘new normal.’  Like that makes it easier.  Well, my new normal sucks and I won’t apologize for saying so.    

In what seemed like a matter of moments, our ‘normal’ shifted from suburban family life to a bedside vigil, watching our beautiful nine-year-old daughter Maddie engage in the battle of a lifetime.  After a sudden decline in her health and a devastating diagnosis of Multi-Centric Osteogenic Sarcoma, we had barely soaked in the gravity of our situation before we were faced with several setbacks, among them the fact that treatment wasn’t working. 

This rare and mysterious bone cancer stumped even the most esteemed doctors and after they attempted treatment, a haunting review of Maddie’s bone scans revealed her cancer was aggressive and pervasive and appeared to be unstoppable.  It had invaded nearly every bone in her body but that was no longer the only concern- one lung had filled with fluid and there were three spots indicating the cancer’s presence there.  Our treatment team’s gut wrenching recommendation was to consider hospice and making her comfortable while we waited for this monster to claim her sweet soul.

That was a ‘normal’ we refused to accept. It felt unconscionable to resign the future of a vivacious, intelligent, lively child to a hopeless defeat and a passive death!  In a moment of pure rebellion, we canvassed the country to find our next ‘new normal,’ which included a temporary move to Cleveland for an experimental (and expensive) treatment. 

We arrived in Cleveland shortly before Independence Day, a holiday we always celebrated in the company of family and friends.  Charcoal grills, beers by the pool, sparklers and fireworks were the hallmarks of our celebration honoring the value of freedom.  This year we were moving Maddie’s ever growing IV pole to get a clear view of the Boston Pops on the tv that hung in her quiet, lonesome hospital room. Though the Child Life team decorated Maddie’s space with purple accents and trinkets, it was a stretch to say it felt homey and it was hard not to think about how this ‘new normal’ was the antitheses of freedom.

Maddie was struggling.  After 14 days of a grueling new chemo protocol, her body was fragile and her bones were weak and brittle. Her legs were casted to prevent them from breaking and after IV pain killers failed, a pain block was inserted to ease the throbbing in her lower extremities.  She was unable to tolerate food and she was losing weight fast.  As she faced the prospect of a feeding tube, she moaned in pain at night and she fought tears by day. 

It was an excruciating time, but Dr. Anderson assured us that if we could stop the cancer from spreading long enough to stabilize her heath, Maddie would be able to receive Radium223- an injected radiation therapy with less side effects than chemo.  This would allow her to rehab her damaged bones and muscles and walk again.  The ultimate mission is to restore Maddie’s health so she is strong enough to qualify for a very promising immunotherapy which offers the hope of a long and healthy future. 

Watching her agony was anguishing and it made me question our decision to press for new options.  The words of her former doctors echoed in my mind.  “Make her comfortable.”  She was anything but comfortable and I wondered if it was our fault.  Was our refusal to accept the idea of letting her go the only reason she was suffering?  I couldn’t bear the thought of giving up on her. I couldn’t leave room for even the smallest possibility that my ‘new normal’ didn’t include this precious child.  So we waited.  And we trusted.  And we rallied.  And she suffered… but she fought.  And we never gave up hope. 

I had never anticipated anything more in my life, and when Maddie’s post-chemo scans came back, I was breathless.  I couldn’t speak.  I couldn’t move.  I couldn’t even blink.  One short month ago, we were being gently persuaded to let her slip away peacefully and today, her lungs were clear.  Although the cancer in her bones still lit the scan up like a neon sign, there was less of it, and by a considerable amount.  It wasn’t gone, but it hadn’t spread.  The treatment was working!  She was eligible for the Radium and we could stop chemo!  We had progress!  We had hope! 

With the termination of her chemo came some relief for sweet Maddie.  Her pain block and IV were shed and the freedom to move to a wheelchair and to smile again became her part of her ‘new normal’.  She was able to eat and giggle and enjoy time with family and she looked forward to conquering the next challenge before her.  She wants to go home someday- to see her sister, to cuddle her puppies, to cheer, to swim, to live again.  She wants her ‘old normal’ back. 

And so we began our desperate bid to convince our insurance company to cover the Radium.  Though it had great success treating other cancers, it had never been used for bone cancer before and the ‘old normal’ ruled the minds of the decision makers governing Maddie’s health coverage.  We were devastated when they rejected our doctor’s request for approval to use it, citing the exorbitant cost ($100,000 for four treatments) and the lack of evidence guaranteeing its success against this cancer. 

The process to plead for approval nearly delayed Maddie’s treatment and with a cancer this aggressive, time is of the essence.  In the eleventh hour, and after a compelling letter from Dr. Anderson explaining the benefits of this promising drug, the insurance company reluctantly agreed to cover two of the four treatments.  We will revisit the issue in eight weeks, when it’s time for the third treatment.  We know we have an uphill battle but fighting for Maddie has become our ‘new normal’ so we are ready for whatever comes our way. For now, we are working hard to bring awareness to Maddie’s Fight and to support her as she begins her next phase of treatment.

To learn more about how you can support Maddie’s Fight, please visit the link below.