Because I'm the Mom

How mothering pervades all relationships in life.

A Mother's Fight to Stop Cancer from Killing Her Child

Parenting a child with cancer: How to live with dying

We're reading and seeing a lot about breast cancer these days, with Angelina Jolie's big news about her double mastectomy after testing positive for the 'breast cancer gene.'

But for those who are not Hollywood royalty with access to the nation's best healthcare at their beck and call, cancer can be a relentless beast that stalks - and too often kills - our loved ones. Some of the stories we hear about the least, are found in the heroic daily lives of parents whose children are fighting cancer.

There are a lot of beautiful and inspirational stories of breast cancer survivors available thorughout the media landscape. We hear and read far fewer stories from families with children battling cancer.  Who can stand to write about it or read about it? It's just too painful.

And yet we must hear these stories and educate ourselves. That is why I am sharing this space this week with the most astonishing woman I've never met.

Cindy Campbell is the mother of Ty Louis Campbell, a little boy battling a rare and lethal form of brain cancer.

Somehow, during this ordeal, Cindy has been able to write regularly about this experience, opening a window into such an intimate, painful and utterly miraculous journey. Her blog is an inspiration and a window into the hearts and lives of this brave family. This week I'm offering Cindy's words because they are an inspiration and they provide profound life lessons for all of us who are parenting or caring for children.

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In a recent post I shared Cindy's heartbreaking news that medicine has no more tricks up its sleeve for Ty, no more surgeries, treatments, no more hope. Cindy writes that on some level, she sensed this was coming.

Today I'm posting a few sections from Cindy's blog that reveal in incredibly insightful detail the psychological landscape of how a mother holds on tightly to hope of a miracle (because her son, whom they call Super Ty, has pulled off his fair share of miraculous rebounds) while starting the agonizing process of letting go. It's an impossible balance the she describes with elegance, dignity and the rawest of honesty.

How cancer robs a childhood

"Slowly, cancer has robbed Ty of everything that he loves.  First, it robbed him of his home.  We had to move upstate away from the ocean, his playground on the boardwalk and all of his friends.  Granted, he has a beautiful home and he is happy here, but it was an adjustment that I'm sure he didn't understand at the time.  Then, the simple concept of "home" was taken from him too, when you consider that he spent over 200 nights in a hospital bed.  His ability to speak became compromised very early on, as did his eating and drinking.  He became too weak to walk only two months into treatment.  Steroids made him so upset he wanted to jump out of his skin, and they made him completely incapable of sleeping at night because he was so agitated.  The chemo made him throw up constantly and lose his golden curls.  The countless infections forced us to live in a bubble.  He suffered head pain that I can only describe as wicked, cruel, vile and evil.  One by one, all of the joys in his life were taken away from him.  After he worked so hard on his physical recovery, late effects of radiation left him paralyzed from the head down.  When he could no longer play with his toys, he fell in love with candy.  As of five days ago, he can't even lick a lollipop without a choking effect. 

I am so tired from crying.  I am physically and emotionally drained.  Today I sat at Ty's bedside in the PICU begging God to stop your suffering, even if that means we have to let you go.  I have done this several times before.  After watching Ty get beat up and knocked out time and time again over two years, I can't even count how many times I have had this conversation with God.  Both Lou and I talk about this all the time. Of course, we will never stop fighting for you. Of course we want you to live, to be with us.  Of course.  But, if it means you are hurting all the time.  If it means you won't live a happy life, then what are we fighting for?

And yet, life and love go on.…

Regardless.  Last night his brother was dressed up like superheroes and playing around the house.  When I stripped him of Ty's old Iron Man costume, I was surprised when Ty whispered "I want to wear that."  I draped it over him to make pretend he was wearing it and just look at this grin.  He truly is UN-friggin'-BELIEVABLE!  No self-pity here.  We have so much to learn from Ty Louis Campbell, I swear.  Live life to the fullest and love every minute of it.  He does despite all he's been through and all he is going through right now. "

Living day to day

My mind and my actions have been racing out of control today.  One minute I'm standing at the East River thinking about how nice it would be to jump in and swim away for a while.  The next I am yelling to myself as I walk down the city streets.  Then I'm sitting in church drenched with tears telling God how I trust him (I always have, but that doesn't always help the pain).  I lay in bed with Ty for an hour, whispering in his ear that he can get better.  I made him a car out of cardboard and hospital tape so we can cover it with candy.  I feel certain he is going to die, then minutes later I am certain that he won't.  I feel like we may even walk out of the meeting tomorrow after hearing the worst, and Ty will still do otherwise just like he's done in the past. Prove everyone wrong.  One thing is for sure. I am not giving up hope, don't worry. 

PS - I want to find a little boy who could really benefit from Ty's wheelchair.  It is brand new.  He sat in it only once at home.  If you know someone, please inbox me at tylouiscampbell@gmail.com. 

 

Pamela Cytrynbaum teaches at Northwestern University's Medill School of Journalism.

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