Category: September Series

September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics. 

By Sheila Quirke 

Dear Stew,

I am fairly certain that you will read these words and they will embarrass you.  That’s okay. You’ve experienced far worse than a grateful, broken mother expressing her heartfelt love and admiration towards you.

Of course you have.  Your day-to-day is the dying and saving of children with cancer.  I can’t begin to understand what that is like, the weight that you carry.

I imagine it, though.  Well, I try.  All the time.  I’ve imagined what it must be like to be you since even before I met you — sometime between hearing the words, “There is a mass in your daughter’s head,” and those days a few weeks later when we actually met you, The Great Dr. Stew.

Did you know you have a bit of a reputation?  It’s true.

People love you.  Universally.  You are beloved. You wear silly ties and sing show tunes down the hall and have opinions about baseball and cartoons.  I know that you prefer Arthur over Caillou and the White Sox over the Cubs.

Honestly, I don’t know too much more about you, other than you do what you do inordinately well and that folks think very highly of you because of that.  I guess the not knowing leaves a bit of a clean slate, a tabula rasa, if you will, for me to project things onto you.

Try as I might to describe the esteem, the feelings a cancer parent has for their child’s oncologist, I always come up short.  ‘Intimate relationship’ is my go-to descriptor, but that sounds so clinical or vaguely misleading, doesn’t it?    But it’s true.

You have witnessed my most joyful and my most wrenching moments I will likely ever have on this earth.  And this is part of your job, your gig, so you do this with other parents, too.  All the time.

People say that the happiest days they have had are the day they married or the day their children were born.  Those days don’t hold a candle to the days I would get a call from you telling me that Donna’s chemo treatment was working, that her scans were clean.

Elation.  Relief.  Joy.  So much better than the day she was born — because I knew then, with certainty, in those calls with you, that nothing could ever, ever be taken for granted in my parenting.  Nothing in this world is a given.

You have a kindness and a generosity of humanity that astounds me.  I worry after you more often than I should.  I wonder, “What will people do when Stew retires?” or, “Is he eating well enough?” Like a Jewish mother, as if you needed another one of those.

When Children’s Memorial Hospital was closing its doors, I came by for one last visit, to pay my respects to the physical space that held so much of my daughter’s story in its walls.  I was sad and a little angry, I think.  Another connection to my girl, my Donna, was going to be lost to me.

You told me, that day, that you would take Donna with you.  I smiled politely, nodding my head, thanking you for your kindness.  Inside, hidden, I hope, was my more cynical, visceral response.  A great big, “Pffft.”  Please, I thought.  Right, he’ll take Donna with him. Sure.  Yep.  Alrighty!

Yes, perhaps there was some bitterness there, too, on the cusp of the hospital closing.

Months later, when I finally got up the courage to visit the new hospital, I saw you, walking down different halls, but still singing show tunes and still wearing a silly tie. And there, in that new and fancy hospital, a place my daughter had never set foot in, was my girl.  With you.  Just as you had promised.

How had I ever doubted you?

I knew then, Stew, that it was love I felt for you.  You are like home to me, like my childhood church, like a favorite blanket, or the familiar taste of my mother’s spaghetti. You are home.  My home.  I know, on a screen, those words probably don’t make a whole hell of a lot of sense, but in my head, they do.

You know Donna, my girl, inside and out, literally and figuratively.  You carry her with you, just as you said you would.  When I see you and we exchange hugs, there is love there. Genuine love.  It feels mutual.  There was a time I would have doubted that.  I don’t, anymore.

So, yes, Stew.  I love you.  The love is selfish, as you are a human thread to the girl that is lost to me, but the other side of that love coin is just deep and unabashed respect and admiration for you.  What a magnificent human being you are to do what you do with such compassion and kindness and raw skill.

On behalf of every child you have treated, and every mother and every father, every brother and sister, every grandparent, aunt and uncle.  Thank you, Stew.  Words will never be enough, but perhaps the love will suffice.  You are simply extraordinary and we are so very grateful to you.

(Okay, on a scale of 1-10, how embarrassed are you?)

From a fan,

Sheila, Donna’s Mama

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Stewart Goldman, MD is the Division Head of Hematology/Oncology, Neuro-Oncology, and Stem Cell Transplantation at Ann & Robert H. Lurie Children’s Hospital of Chicago.  You can read Dr. Stew’s Story HERE from the 2013 September Series, where he describes what it is like to be a pediatric neuro-oncologist.  If you wish to donate to his research, you can do that HERE, listing the “Neuro-Oncology Fund” in the comment section of the donation page.

Please know that Stew is one of many, too many to mention, that cared for my daughter during her treatment.  I could and should write love letters to all of them, from surgeons to nurses to custodians.  Each of them are loved and appreciated and, I suspect, will never fully know the role they play in the lives of the children they treat.

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This year’s September Series is over, but you can still subscribe to my blog.  Here is how: Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.

September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics. 

By Jacob Wagner 

The day when my little brother, Ryan (you can read Ryan’s Story HERE), was diagnosed with cancer it seemed to me as if the earth stood still. Time ceased to move forward. All of it seemed surreal; the severity of it all hadn’t hit me. I took the news as any eleven year old would, and never even thought of the possibility that Ryan might succumb to the beast of a sickness that lay inside him.

For ten tumultuous months, we would fight alongside Ryan. We would cry, and scream, and sometimes laugh, but most importantly, we would savor and cherish every single moment we had with Ryan.

Ryan was an energetic kid, a firecracker of youth and explosiveness. He would dance, shadow box, run around in circles, all sorts of wild things. After he started chemotherapy you could notice the change in his energy. Physically he just seemed more tired.  I soon found myself coming to feel the same exhaustion he was feeling after only months of treatment. He was kicking butt for a while into his diagnosis, and made me think that everything would okay, that he would come through, until things took an unexpected turn for the worst.

We found ourselves in a new hospital, thousands of miles away in another state, where Ryan was introduced to new forms of chemotherapy. Six long, chaotic, painful weeks we would spend there in that new hospital, trapped in a purgatory. I almost lost my brother to surgeries and toxic treatment in that place.

I had finally come to grips with the fact that he may not make it out of the war against his sickness in one piece, and this tore at me for the weeks to come, gnawing away at the wall of confidence and subconscious denial that I had built up around me since Ryan was diagnosed.

We soon found ourselves on a military medical flight back home to Hawaii, and along with feelings of confusion and anxiety, a heavy and abyssal pit formed in my stomach, which I was sure, would swallow the entire plane up in its dark claws.

As soon as we returned home, Ryan seemed happier, full of more energy. He smiled more. We were living on a military base at the time, and previously had to move houses due to his condition. When we returned home, we visited the old neighborhood, where we had first lived before Ryan’s diagnosis, where our friends lived.

I recall a very vivid memory of me, wheeling Ryan around in his wheelchair out in the field area behind the old house. I was a little upset that he couldn’t play and run around like he usually did back there before he got sick, but to my joy I was able to wheel him part way onto the grass, where his friends swarmed him and played around him. He seemed so happy, and his eyes so bright.

I was sure now that he would make it through this. I was sure that he’d get to play with his little friends for years to come, and this moment alone had gotten my hopes up. That was one of the last good memories I have of Ryan.

After two weeks of being home, Ryan passed away in my mom’s arms, the gentle Hawaiian trade winds and the light tropical rain welcoming a new soul into their fold. I feel as if I lost a part of me to the winds, that night. I stood next to my mom on the patio, as Ryan slipped away from us.

I was overcome with such a great sadness, but I was afraid that if I were to cry right then and there I would scare Ryan as he closed his eyes. I waited for the inevitable and when it came and passed, I screamed. I screamed so hard that the back of my throat hurt, and cried so heavily that my stomach and jaws started to both ache.

We all cried and we all screamed, and then we had close friends drive out to say goodbye to Ryan. Not wanting to call the mortuary right away, these friends of ours stayed all night at our house, as my parents cradled my brother’s body. We cremated him and had his ashes spread at his favorite beach. Yet, even after all of these years, those events still feel as though they happened only just yesterday.

I lost my best friend, my playmate, my brother. For the rest of our time in that house, something was missing, something was terribly wrong. I carried that weight with me when we finally moved off the military base, and the pain still emits a dull echo of that fateful night every time I look up at his pictures or see his toys, or every time we visit his beach, or every time I hear his favorite songs on the radio.

I long for the days when he would go swimming together, when we would curl up on the couch and watch our TV shows, or even when he was in that wheelchair, surrounded by friends and family in the big grassy field, still alive.

If Ryan were still alive now, I would tell him that I love him. I would tell him that he was the toughest fighter I’ve ever seen, and his bravery was beyond comprehension. I’d let him know that nothing in this world could ever drive us apart from him, nothing out of this world or in between would be able to sever my love and eternal bond with him, my deeply missed brother.

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September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics. 

By Amy Aldridge 

Oh, September. You’re a tough month to swallow. You bring a sea of gold, emphasizing my loss and the losses of cancer parents everywhere. What are we to do with you?

There’s a ribbon color for every malady, a day/week/month for every disease with a name. You just happened to be assigned this particular color and cause. You make it very hard for some of us for these 30 days. You emphasize desperation, illness, loss, and great need, sometimes sprinkled with a positive story, but not enough of them. You often bring out the worst in me.

Who am I? Growing up, I was a smart kid, but one who lived in fear of my father, a perpetually angry man. Fear has invisible fingers that hold you so tightly that it’s difficult to break free. Fear lowers your capacity for risk. When you are afraid to fail as a child, you become an adult who is afraid to fail, too.

I was a frightened young girl who wished to be brave. Intrigued by all things British, my interest was piqued by a combination of late-night episodes of The New Avengers, James Bond movies, my fascination with the Royal Family, and my insistence on having the Princess Diana haircut. I thought I would make an excellent spy in Her Majesty’s Secret Service.

I dreamed of solving mysteries that no one else could; of being the heroine. I wanted lipstick cases with poison darts, stilettos with phones in the heels, and cars with rocket launchers. I would be brave, and I would always catch the bad guys. Failure was not an option. Someday, I would not be afraid.

Fast-forward many years. On July 24, 2006, the safe, comfortable life I had built (I never became a spy) came crashing down on me like hot waves of salt water. My daughter was diagnosed with terminal brain cancer on her 12th birthday. (You can read Sahara’s Story HERE.)

That day, our family went to war, and I set out on a mission that was life or death. I’ve tried to find other words to define it, because you can’t or shouldn’t compare a terminal disease with a battlefield in a faraway sandy hell. Or can you? War is hell, right? War is a daily battle, injuries with blood and stitches and triage, needles and pumps and medicine. It’s an ever-changing tactical mission that sees no end.

Trying to save my child’s life when the options were few to none was my version of being surrounded by the enemy. 24 hours a day of being on constant watch, sleeping when we could, coping with unbearable conditions over which we had no control. Cancer’s only mission is to kill. My only child, dying.  Ravaged not only by the disease, but by the weapons of chemotherapy, radiation, and steroids that destroyed her little body a day at a time, over the course of seventeen months.

Mouth sores that burned and bled. Stretch marks and skin tears that required me to bandage her arms and legs to keep them from splitting open and getting infected. She lost the ability to walk and became wheelchair-bound. Her words became very difficult to understand. She could barely chew and swallow. She was helpless, and I was the one trying to find the answer to the mystery that no one could solve.

I was so convinced that I would crack the code. I searched the Internet day and night, finally finding some hope at Stanford University. In the end, it was too late to save Sahara. The timer on the bomb clicked back to zero, and in an instant, our world detonated. The mission was truly impossible; the bad guy had won.

Sahara died on the evening of November 5, 2007. I had failed to save her life. I’ve negotiated with this guilt ever since. Did I do enough? Was I bold enough? Did I make the right choices? Did I miss something? Did I make it worse by taking her so far away from home for treatment, away from family and friends?

The niceties of “you did all you could/it wasn’t meant to be/it was God’s will/she’s in a better place,” have never comforted me. A mother’s role dictates that she should be able to keep her child safe and alive. A mother shouldn’t have to wonder what the differences in treatment might be from one institution to the next. A mother should not be told, “It’s always fatal. Take her to Disney World.” Sahara had already done Disney, and certainly didn’t want to go because she had cancer.

She hated that people identified her with cancer. Not a day goes by that the “what-ifs” don’t sneak into my mind. A parent should not be powerless and afraid. Suddenly, the scared little girl inside me was faced with the unthinkable, and I had to navigate those deep, dark waters with a brave face that hid my terror so that Sahara could not see.

The night she died, the best of me died with her, too. My worst fears had been realized. There was nothing more I could do. Ultimate, final failure.

September pours salt on an always-open wound. It’s the feeling I get when I hear a zipper being zipped. For me, that sound means that the body bag containing my daughter was just zipped shut in my living room. In the heart of baseball season, when I see a San Diego Padres logo, it jolts me into thinking about the fact that Sahara was wearing a t-shirt with that logo when she died. I remember every sight, smell, sensation, taste and emotion. It is a hyper-state of being, this post-cancer-parent’s life.

September, you’re too much sometimes.

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If you don’t want to miss a single entry in the September Series, consider subscribing to my blog.  Here is how: Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.