Innocence Lost

Sensitive Content: Child loss

I’m already in bed, just approaching that point of no return, that tipping point between drowsing and dreaming, when the phone rings. The bedside clock glows 10:10 as I fumble to answer.

"Mom?"

It’s Travis, my son. He’s crying, I can hear it in his voice.

"What is it, what's wrong?" Instantly awake, I sit up and swing my legs over the side of the bed. The air conditioning that had made this Midwestern August day bearable now chills me as I sit there in a twisted mess of nightgown, heart pounding a terrified rhythm beneath my ribs.

"They found a mass in his head. On his brain," Travis says. The words come through the sobs as he fights to get them out, those word so foreign, so incomprehensible. He is speaking of his son, Aiden, light of our lives. Aiden is four.

"Oh my god!" I say. "I'm coming there." The phone slips to the floor and I get out of bed, throw on some clothes, pull my hair into a messy pony tail, slap on a ball cap. All the while I'm thinking, they're wrong, they have to be wrong. Maybe Aiden just bumped his head like kids do, maybe there is just some swelling, maybe it will turn out to be nothing.

But as I drive to the Children's Hospital, I think of the signs, evident the past few weeks, that have led us to this moment. There had been intermittent vomiting, growing lethargy, occasional garbled speech and un-coordination, all interspersed with dismissive trips to doctors and emergency rooms without conclusive results.

And I think back to the previous weekend, taking that little boy's hand, leading him to the backyard play set, spying pirates through the looking glass, blasting them with tree limb muskets. I remember his little boy laugh as he demanded, "Come up here, grandma!" and my willing ascension to the upper story, the world of pirate ships and impending peril. As I sat huddled there, in the corner of the play set cabin, something spoke to me, said, "Cherish this moment." I heard it, clear as a bell, in my head. I realize, as I drive, that this was some sort of premonition, and castigate myself for not having stayed longer, for letting something trivial pull me away. Because the peril, it seems, was real.

The security check and badge procurement process at the hospital is interminable. They seem so calm to me, these people behind these desks, taking their time, doing their jobs. I struggle to be polite, as my turmoil tempts me to lash out, to tell them to hurry the hell up. I just need to be upstairs, upstairs in PICU with my child, who is there with his.

I exit the elevator on the upper story, finally, and wander through hallways meant to resemble a castle, knights and armor and princesses abound. Once I find the room, I go to Travis, take him in my arms, and we cling to each other and cry. Travis's wife, Laura, is curled into bed with Aiden, just holding their confused little boy, providing what comfort she can in this terrifying new environment. I go to Aiden, kiss his forehead, say, "Grandma's here, baby." He curls further into his favorite blanket, which is never far away. I miss his usual retort, "I'm not a baby, grandma!"

They are waiting for a contingent of doctors to arrive, an oncologist, a radiologist, a neurosurgeon. The titles strike fear into me, indicative as they are of the suspected diagnosis. As we wait, the story emerges. Today had seen a visit to a new pediatrician, one enlightened enough to recognize the symptoms for what they were and order the right tests. One of those tests was the CT scan that showed a golf-ball size tumor lodged in the base of Aiden's brain. The nurses show it to me, the scan, when I ask. I need to see it for myself to believe that someone, somewhere hasn't screwed up, made some colossal blunder that is driving us into this abyss. It is surreal, when I look at it. I can't comprehend how something like that can grow in a person's brain. This isn't supposed to happen to anyone, least of all a child.

Laura's mother arrives, looking just as shell-shocked as I feel. Her eyes are red, mascara smeared, as she moves to Laura, gives her an awkward hug across the upright side rails of the bed, just stands there with her arms around her daughter and holds on tight. It is good that she is here. Laura is going to need her.

The doctors arrive for the telling of things we do not want to hear. The oncologist has seen the scans, is fairly certain what it shows, pronounces the ugly name. Medulloblastoma, a cancerous tumor in the cerebellum, the back part of the brain that controls walking, balance and coordination. Discussion ensues on how to proceed, should a surgery occur for tumor removal, or is some other treatment protocol indicated or preferred? The neurosurgeon himself has not come, but his assistant is there. Laura asks repeatedly about what outcomes they have seen in other kids that have presented with medulloblastoma and proceeded with surgery. The responses are vague but, really, what choice is there? The decision is unequivocally: "Yes, get it out!" We just want it to go away, want this foreign intruder removed from our small boy's body, want our smiling little jokester back. Once that decision is made, Travis and Laura are asked to sign a release form that allows the facility to capture tissue samples from this tumor to be used in research that may benefit others. Surgery is set for next morning. Time is of the essence since continued growth and surrounding inflammation can potentially be life threatening, cutting off blood flow to the rest of the brain.

My heart is breaking for my son and his wife, high school sweethearts who had their first baby early, haven't yet seen their first anniversary, and are expecting their second child in five months. They should be basking in the beauty of their growing family, not forced to make these kinds of decisions. I know they will never be the same. I realize, too, that they need to be alone, to cling to each other and absorb this blow, together. Reluctantly, I kiss Aiden once more and make my way back through the castle maze to the night beyond. On the way home, I run a red light, at a place where I should have turned but just forgot to, thinking, why are they all honking at me, until I realize what I've done. At home, I crawl into bed and bawl, the sobs raw and aching. I cry for my grandbaby, who is about to enter hell, and I cry for my son, who is already there.

The next morning, a family group crowds into Aiden's room. We meet the neurosurgeon who will be performing the resection. Everyone assures us that this surgeon is the best in the field. He is Brazilian, a heavy accent makes it difficult to understand him, and he lets his assistant do most of the talking. With the exception of Travis and Laura, we are soon ushered from the room so Aiden can be prepped for the surgery. When the couple joins us later, in the waiting room in which the rest of us have sequestered ourselves, their eyes are puffy and red, their faces ravaged. How hard that must have been to let go of that hand as their son was wheeled away from them into the unknown.

We spend an agonizing six hours sitting in that room. Brothers and sisters, moms and dads, spouses, significant others. Beyond an initial 'getting everyone up to speed' discussion, there is little conversation, each of us wrapped in our own miserable thoughts. Travis is on his iPhone, already doing the research that will become their mainstay. Laura tries to sleep but can't, sits silently for the most part, blonde hair hanging past her downturned face, praying, I suppose, to whatever god there is.

Finally, the doctor enters, tells us the surgery went well, the tumor was able to be fully removed. There is a sense of relief in the room, a lightening of mood, a few smiles now. Aiden has made it through the surgery, brain surgery no less, that ugly mass is no longer within him. The doctor seems uncomfortable there, facing our questions, relies again on the ever-present assistant. As he leaves, he says, "This boy needs to be getting the radiation quickly."

There has been debate whether Aiden should undergo radiation. The medical community is very hesitant to radiate a child's brain under the age of five. But it has been decided to follow the surgery with proton radiation, a more targeted approach that will perhaps protect the surrounding fragile tissue of his still growing brain. There are a limited number of proton therapy centers scattered throughout the country so the family will be forced to travel to Chicago for Aiden's treatment, 500 miles from home.

The days that follow are heartbreaking as Aiden recovers from the surgery. Biopsy results have confirmed the initial diagnosis and a chemotherapy regimen begins. I watch in dismay as blue-gowned nurses affix eye protection and don especially thick gloves before handling the drugs that they shoot into the veins of this child. Aiden lies in the bed with eyes closed, for the most part, and when he does open them, his left eye wanders. He has lost control over the left side of his body, and squirms in frustration trying to make it work. A little boy, used to running, playing, confused and betrayed by his own body, not understanding why it won't do what he wants it to do. The doctors tell us this will be temporary, but they're wrong. Medulloblastoma is contained within the cerebrospinal fluid so it is restricted to affecting the brain and the spine and in the coming days, a tumor on Aiden's spine steals the use of his legs entirely.

What follows is a year of broken promises of remission, a roller coaster ride of short periods of good times and promising results followed by longer times learning to live with new symptoms and devastating results of new treatments. Travis and Laura celebrate their first anniversary in a conference room in the hospital, just steps from their young son's room. Every poke, every spinal tap, every MRI is heartbreaking for them, as they are so often forced to watch their son being wheeled away from them, down a sterile hallway, whisked away to be anesthetized for another test. Baby Adam is born and spends much of his young life in a hospital bed next to his big brother.

Aiden's body begins to waste away, as the chemo makes him nauseous and unable to eat. A feeding tube is placed to provide nourishment, but even that he often vomits. There is always a 'puke bucket' close at hand. For a while he lives on gummy worms, later cheese curls, later soda crackers and Sprite.

In early July, with the rest of the country preparing to celebrate our independence, Aiden begins to experience seizures. During the first of these terrifying events, the ER doctor seems nearly lackadaisical, thinking Aiden is presenting as normal for a child with this disease. Travis stands beside the bed of his child, crying, insisting, "Something is wrong!" An EKG confirms the seizures. An MRI shows that the cancer has spread to the meninges, the membrane that covers the brain. No surgery can remove this, Aiden's young brain will tolerate no further radiation, and all the different regimens of chemotherapy have apparently been ineffective in halting this progression. On hearing the news, Laura springs from her chair beside the bed, lashes out, striking the side rail, "Damn it, we did everything right!" she cries before breaking into tears.

Aiden is started on a steady dose of steroids in an attempt to reduce the inflammation in his brain that is causing the seizures. The steroids soon bloat his body nearly beyond recognition. Even so, Aiden continues to experience small 'brain events', as they are termed, and eventually Travis and Laura must make the heartrending decision to subject their child to no more of this torture. They arrange for home hospice care and the family gathers to say goodbye.

Christmas morning, that early morning when Aiden died, the sun still rose. It seemed to me that it shouldn't, but it did.