Aidan's Story: A Juxtaposition

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?

This is Aidan.  He loved dinosaurs and trains and Buzz Lightyear.  He had exceptional taste in music at such a tender age.  Elvis Presley’s “Suspicious Minds” was a favorite to dance to.    Photo October 2009

This is Aidan. He loved dinosaurs and trains and Buzz Lightyear. He had exceptional taste in music at such a tender age. Elvis Presley’s “Suspicious Minds” was a favorite to dance to. Photo October 2009

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.

Our strong, brave, gentle boy left this world on July 30, 2010, just 4 days after we learned that he had relapsed.  Aidan has found peace, we know this for certain.  There are no brain tumors in heaven.  Photo May 2009

Our strong, brave, gentle boy left this world on July 30, 2010, just 4 days after we learned that he had relapsed. Aidan has found peace, we know this for certain. There are no brain tumors in heaven. Photo May 2009

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.  

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