Category: Childhood Cancer Stories 2013

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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.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.  Read more about this series and childhood cancer HERE.

By Shannon Anderson

December 18, 2011 . . . The Bears were playing Seattle.  My husband and I had been gifted tickets to a game and were so excited to be able to share the tickets with one of my husband’s best friends and his wife.  I remember vividly that it was a gorgeous December day . . . bright, sunny and very unusual for Chicago.  I had just begun my Winter Break from teaching sixth grade and I was thrilled about the possibility of spending more time with my two children Leah (6) and James (2).  My husband and I had already decided we would not be traveling over the holiday and would be spending Christmas at home.  I relished of all the things I could do with my two children over the next week that I was off before Christmas.  My husband, a life-long Bears fan, could not have been happier that day.  He was in his glory, as many men in Chicago would be.  In my mind I remember thinking . . . does life really get any better than this?

My question would be answered a lot sooner than I thought and with an answer I never expected.  Later that day my children came home from their grandparent’s house.  Leah’s eye looked funny.  It was slightly droopy and her pupil appeared to be enlarged.  My husband and I called her doctor and were told to bring her in the next day.   After seeing one doctor after another over the next three days we ended up with our daughter in an ER at 2 A.M.  A shaken ER doctor approached us and told us, “She has a mass in her brain.”   What?  Impossible.  Not my child.  I just went to her conference a month ago and found out what a gift she was in the classroom.  This can’t be happening.  The news would only get worse.  After arriving at Children’s Memorial Hospital in Chicago we would learn that not only did Leah have a mass in her brain, but also her chance of survival was virtually impossible.  We were four days from Christmas and looking at a ten percent survival rate for our oldest child.

Leah, an amazingly empathetic girl and out of this world big sister to James, lived for less than a year from that Bears game.  We never spent another Christmas with her.  She endured two brain surgeries, countless MRI’s of the brain and spine, two different chemotherapy treatments, six weeks of radiation, several hospital appointments; ER visits, and was eventually put on a clinical trial.  She did all of this with a grace and style that is hard to even put into words.  She finished kindergarten and even began first grade.  She truly LIVED, even with everything she was going through.

We lost Leah on 12/12/12.  That’s a hard date to forget.  It’s ironic how we (my husband and I) thought at the time that living through her treatment was rough.  Now we KNOW that that time was a drop in the bucket compared to our lives now.  Nothing in this world can compare to the life we live now.  A life without Leah.  Leah died three days after her little brother turned four.  He never even knew it was his birthday.

We have managed to survive one Christmas without Leah.  My husband and I have no other choice; we have to help an innocent four year-old boy navigate a world without his beloved older sister.  Leah is the first thing we think about every morning and the last thing we think about before we go to bed.  As of late, with the beginning of a new school year, my mind has been overwhelmed with thoughts of her.   This school year should have welcomed our Leah into the second grade with her 8th birthday quickly following.  But that is not to be for our family.

I started back to school this month and was having a difficult time doing so.  I found myself thinking about Leah constantly as she loved to come to my school and help me get my classroom ready at the beginning of a new year.  I saw her writing her name on my chalkboard, drawing myself and other colleagues pictures, and forcing James to play school with her.  It was tough.

That same day during a faculty meeting one of my colleagues shared a story with our entire staff.  He read aloud a quote from one of his favorite books.  This is the passage from the book Bird by Bird by Anne Lamott that he read:

“Thirty years ago my older brother, who was ten years old at the time, was trying to get a report written on birds that he’d had three months to write, which was due the next day.  We were out at our family cabin in Bolinas, and he was at the kitchen table close to tears, surrounded by binder paper and pencils and unopened books about birds, immobilized by the hugeness of the task ahead.  Then my father sat down beside him, put his arm around my brother’s shoulder, and said, “Bird by bird, buddy.  Just take it bird by bird.”

That’s it.  Bird by bird, day-by-day, hour-by-hour, sometimes minute-by-minute.  Life without Leah is bird by bird.

We never know what life is going to throw at us.  It is completely unpredictable.  I NEVER would have believed that my seven year-old daughter would be diagnosed with not only a brain tumor, but also one that is inoperable in our day and age.  One where we would be faced with literally no treatment options, but a diagnosis of almost certain death and all we were left with to keep us going for almost a year was hope and hope alone.

Life can and will change in an instant sometimes.  Mine did in December of 2011, along with my husband’s, my son’s, and most importantly, Leah’s.  For the rest of my life, the holidays and special days Leah will never get to attend (Christmas, her birthdays, the first day of school each year) will be hard.  I will get through them bird by bird.

The Anderson family has established a foundation to honor Leah’s memory and help both raise awareness for pediatric cancer and fund research.  You can learn more about the L.E.A. Foundation and the work they do here.  Grateful thanks to Shannon for sharing her daughter’s story today, Leah’s would be/should be 8th birthday.  Kraft och omtanke.

If you’re looking for all of the posts in the  Childhood Cancer Stories: The September Series, you can find them catalogued HERE.  

If you don’t want to miss a single child’s story, you can subscribe to my blog.  Please and thank you!

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.

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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.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.  Read more about this series and childhood cancer HERE.

By Kathleen Manning

I buried my son in the earth on the fourth day of August in 2010.  He died in the crook of my left arm five days earlier.  His certificate of death reads “progressive brain tumor.”  That bastard has a name.  Anaplastic medulloblastoma.

My son, Aidan, the most wonderful gift I will ever know, lived a cruelly abbreviated life, just 3 years, 2 months and 13 days, because his cancer was more sophisticated than the current treatments available.  Did you know that in the last 20 years the FDA has approved only one new drug for any childhood cancer?  Are you aware that half of all chemotherapies used for children’s cancers are over 25 years old?

It was in an emergency room, late in the evening on December 19th 2009, when we heard the fateful words, “Your son has a brain tumor.”  In disbelief, I went out into the hallway with the doctor to view the CT scan and there it was, a perfectly round bright white light shining inside of my son’s skull.  Aidan was transported to Children’s Memorial Hospital (now Lurie Children’s) in Chicago and had his tumor resected on December 21st.

His MRI demonstrated that the tumor that had attached itself to his cerebellum had already spread throughout his spine.  A tissue sample was sent to the lab and a few days later our worst fears were confirmed.  Aidan was given the grim diagnosis of anaplastic medulloblastoma, M stage 3.

We were told that Aidan would spend the next few days in the hospital then be discharged to recover at home for a week before beginning chemotherapy.  That did not happen.  Instead, Aidan’s journey followed a horrific trajectory.  Aidan remained in the hospital for 89 days…

My husband and I spent New Year’s Eve in a surgical waiting room while Aidan was having a drain inserted into his brain.  Just moments before, the pressure in Aidan’s head was so great that CSF was dripping out of his surgical access site into a puddle on the floor, an image that is seared into my memory.

Five days later, Aidan was in surgery for the third time.  He required a decompressive craniotomy because his cerebellum had swollen to the point where it was impacting brainstem function, affecting his ability to breathe.  The very next day, less than 24 hours later, Aidan was in surgery for the fourth time in 17 days as his cerebellum continued to swell.  The neurosurgeons removed a large piece of bone from the back of Aidan’s skull and approximately 1/3 of his cerebellum.  It was this trauma that robbed Aidan of his ability to walk or talk.

Yes, Aidan’s journey followed a horrific trajectory.  It bears repeating.

Aidan’s Cancer Story was released last year to recognize childhood cancer awareness month.  It consists of 30 installments, in serial format, one for each day in September.  It is true, Aidan’s story is sad.  But it is also a story of joy, courage, resilience and hope.  One of the installments is actually titled “Joy, with a Side of Bacon.”  There is so much happiness in that post.  The installment “He Speaks” defines the word resilience.  And “Angels on Earth” demonstrates how ordinary people are capable of the most extraordinary things.

Aidan’s story is one of incredible juxtapositions.  Beauty and Unspeakable Horror.  Terror and Joy.  Miracles and Heartbreak.  Tragedy and Hope.  Amid the devastation, we experienced countless blessings and joyful moments during his seven months of treatment.

Miraculously, Aidan was able to breathe on his own after suffering massive brainstem compression.  After 42 days of not being able to make a sound, we heard his sweet giggle.  Every MRI after each subsequent chemotherapy treatment showed continued tumor regression. In the first week of March, Aidan spoke his first word since his initial tumor resection 82 days prior.  There were tears of joy the first week of April as I watched my boy take three steps in physical therapy, his first in nearly 3 ½ months.  We celebrated Aidan’s 3rd birthday, at home, in May.  One of my greatest joys that spring was dancing with Aidan at his music class.  We were blessed.

During the early summer months of 2010, Aidan spent many more days in the hospital as a result of complications, infections and side effects from chemotherapy.  The installments titled “Revolving Door”, “The Opportunist”, and “Morphine” provide a glimpse of the brutality of cancer treatment.  Current treatments for pediatric brain tumors are barbaric.  They are so harsh that children who are fortunate enough to survive will live with long-term effects.

It is estimated that 74% of childhood cancer survivors have chronic illnesses, and some 40% have severe illnesses or die from such illnesses.  Radiation to a child’s brain can significantly damage cognitive function, limiting the ability to read, write, and do basic math.  Physical and neurocognitive disabilities may prevent survivors from fully participating in school, social activities and eventually work.  Cancer treatments affect a child’s growth, fertility, and endocrine system.  Childhood cancer survivors are at significant risk for secondary cancers later in life.  Sadly, these are the “best” treatments available.

It was the third week of July when Aidan’s health rapidly declined.  It seemed to happen right before our eyes.  Aidan had his scheduled MRI on Monday, July 26th. It was on that day that his oncologist gently told us that there would be no cure for Aidan.  Despite multiple surgeries and five rounds of aggressive chemotherapy, Aidan’s tumor had returned.  His MRI showed extensive tumor spread.

Science failed Aidan.  The shameful lack of funding for pediatric cancer research failed Aidan.

Cancer is the number one killer of children by disease.  Yet, inexplicably, pediatric cancer research receives LESS THAN 4% of the federal budget’s $4.6 billion for the National Cancer Institute.

Out of tragedy comes hope.  Aidan’s Army – The Aidan Manning Memorial Foundation was founded in October 2010.  Our work through the foundation is how we parent Aidan now.  We chose to turn our experience into hope for other families, to provide hope for children with brain tumors.  Aidan’s Army is dedicated to advancing research and treatment of pediatric brain tumors.

If you would like to read Aidan’s Cancer Story in its entirety, we are sharing a piece of it everyday this month of September on the Aidan’s Army Facebook page.

Dear readers, thank you for witnessing these stories this month.  Reading and sharing these stories help to bring about awareness.  The awareness needed to help increase the shamefully limited funding that is allotted for pediatric cancer. The awareness needed to advance research for safer, less toxic treatments for our children.  These children, our future, deserve to have better options for their care.

To my dear friend, Sheila, thank you for inviting me to write a guest post to honor my son’s memory and thank you for bravely using your blog as a platform for pediatric cancer awareness this month.

To my sweet Aidan, rest in loving peace and until we meet again, may God hold you in the palm of His hand.

If you’re looking for all of the posts in the  Childhood Cancer Stories: The September Series, you can find them catalogued HERE.  

If you don’t want to miss a single child’s story, you can subscribe to my blog.  Please and thank you!

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.

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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.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.  Read more about this series and childhood cancer HERE.

By Heather Hornik

John, my husband, had never shown up unannounced at my office.  Yet on a Friday afternoon in March 2007 he was in the waiting room.   “It’s Donna.  Jeremy called.  Donna has a mass in her head.”  My mind generated a flood of denials to undo these terrible words—It’s not possible, Donna’s only twenty months old, These things happen to other people.  John’s anguished face, however, told even more than his words.  “It’s bad.  This is bad.”

He wrenched me out of my denial by telling me that our son Jeremy had sobbed through the call.  John and I sat looking at each other, groping to find some way to understand this news.  “We have to go to Chicago right now,” I said.  John agreed.  We packed hastily, flew to Midway Airport and arrived at Chicago’s Children’s Memorial Hospital around ten pm.

Jeremy met us at the hospital’s night entrance and led us to the ICU.  He told us what had happened during the previous twenty four hours, then I joined Sheila at Donna’s bed in the ICU, my first chance to see Sheila and glimpse my granddaughter in the hospital.  Donna lay still and sedated in a high crib, dwarfed by tubes and wires, conduits between her small body and blinking, clicking and beeping machines.  Her pale face was tiny behind a toddler-sized oxygen mask.  Sheila held Donna’s hand and whispered to her as we stood by the crib.  Sheila and I went out to the waiting room so Jeremy and John could take our place at Donna’s bedside.  Shortly after, Sheila, John and I went home to sleep; it was Jeremy’s night to stay at the hospital with Donna.  We returned to the hospital early the next morning.

In the next ten days we sat in the family area with Sheila and Jeremy’s family and friends, grateful for the food they brought and the conversation they offered.  Phone in hand, John and I paced the corridor, notifying family and friends of what had happened and receiving their concerned calls.  Hour by hour we waited for Jeremy or Sheila to appear with an update.

For me, mostly I waited in suspended anxiety to see my son.  I needed to look into his face to read how Donna was really doing, how Sheila was doing, how he was doing.  I trusted in Jeremy’s strength.  Even so, I needed the reassurance that could come only from being in his presence, seeing, feeling and sensing how he was doing.  I deeply yearned to soothe and shield him.

Throughout that first week as I watched Jeremy hold his baby Donna, my memory took me back to the time when I was the parent and he was the baby of twenty months.   I felt his little body in my arms, remembering how safe and warm it felt to hold him as he drifted to sleep.  Yet even as I felt those sweet body memories, I knew that I was never called upon to endure such a trial as a parent.  I never worried as I held my baby that he could come to such harm.  In the hospital I wanted to reverse time and go back to those years when simply holding Jeremy was enough.  And I wanted to erase time so that Jeremy could return to the simplicity and innocence that had been yanked forever from him and his family.

A week or so after those first days Jeremy and I sat over dinner in a restaurant near the hospital.  Donna’s condition was a bit more stable, stable enough for Jeremy to ask, “Mom, how are you doing?   What has this week been like for you?”  Such an ordinary question for a grown son to ask his mother–Mom, how are you doing?  Yet with that question I understood better why I felt such an imperative to be in Chicago with my son and his family.

It was about the question, How are you doing?  When John and I decided so soon after Jeremy’s phone call that we had to go to Chicago, we were responding to a very basic need to be in our son’s presence during this crisis.  We needed to be with him, and we trusted our being there would help him, in some unspoken way.    Nothing we could say or do from a distance would do for us and for him what simply being there would do.

There is mystery in the reciprocal feelings between a parent and child.  There is an essential communication that is not in words.  Parents know this when they hold their baby.  The baby knows it when he or she is being held.  At a time when I expected Jeremy to have nothing on his mind but his wife and child, he asked about me.  That question, How are you doing, can simply be a casual greeting between acquaintances, but between a parent and child it is shorthand for much deeper questions—How are you in your heart?  In your soul?  How are you in the cradle of the family you have yourself created?

When Donna became so gravely ill, I experienced intense fear and anxiety for my son and his family.  I had to go to Chicago.  Only with Jeremy, Sheila and Donna could I know how they were doing.  Only in Jeremy’s presence could I know how he was doing.  Because of the mystery of reciprocal feeling, when I was with Jeremy I also could know better how I was doing.  And I think, too, that I needed to be in Chicago to help Jeremy, in some unspoken way, to know how he was doing.

That was the first of many sojourns in Chicago in the two and a half years of Donna’s life after the cancer diagnosis.  In those years I saw Jeremy intensely joined with his wife and child.  I came to love Sheila deeply, to value her gifts and talents as a woman and mother, and to cherish her love for my son and their children.  In Chicago I watched as Jeremy and Sheila made sure that Donna’s life was not defined by cancer.  They kept their fears in check and gave Donna a good childhood, and this may have been their most heroic achievement.

Together Jeremy and Sheila loved and cared for and, ultimately, buried their firstborn, a grief that no parent should ever have to endure. Through my visits in Chicago came the blessings of witnessing daily courage and learning to choose hope.  Through Sheila and Jeremy’s care for Donna I learned how resilience is born in character and nurtured in love.  And through their strength I acquired a bit more strength myself.  I am blessed that they allowed me into their home and their hearts.

Grateful thanks to my mother-in-law for providing a grandparent’s point of view on the loss of a child and pediatric cancer.  Donna adored her time with Grandma and Papa and we are indebted to them for all the support and comfort provided over the course of Donna’s treatment.  We could NOT have done it without them.  

If you’re looking for all of the posts in the  Childhood Cancer Stories: The September Series, you can find them catalogued HERE.  

If you don’t want to miss a single child’s story, you can subscribe to my blog.  Please and thank you!

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.