Meet Sydni, diagnosed at 2 months old with an immature teratoma of the brain. Sydni’s dad Stephen shares her story in his own words:
My daughter's first brain surgery occurred when she was two months old. That was also the day when I wrote her first eulogy on scraps of paper and napkins in the hospital waiting room.
My angel on earth is now 14 years old - but the journey is now a life-lasting crossing. My daughter will never be able to walk, or talk, or eat other than through her feeding tube, amongst a much longer list of ongoing challenges.
When Sydni was one month old:
It was shortly before Christmas when I first noticed the slightest indentation framing the eyebrows o'er my one month old daughter Sydni’s gaze. It seemed that her forehead had grown somewhat larger than the week before. A few days later, still weighing heavily on my mind, I ultimately brought this worry to my wife’s notice before finally deciding upon alerting our family doctor. Given that Sydni had literally just been examined during a recent one month check-up, my baby’s pediatrician simply referred to her notes before reassuring me that Sydni’s head measurements were nearly identical to those of her big sister Tari at the same age.
I chalked up my unease towards simply being just another in a long line of overly paranoid fathers of a newborn.
But a week later, Sydni’s forehead appeared even more pronounced than before. All I kept thinking was: ‘Why can nobody else see this?’
Although not alarmed, certainly I knew better than to ignore my gut instincts. This time, though, I wouldn’t accept no for an answer. I demanded that we make an appointment for the first available opening. In the meantime, I feverishly explored across the internet investigating anything and everything even remotely related to big heads. By now, my sixth sense was screaming out loud. It told me exactly what any parent would not want to hear. I just knew that something was not right.
On January 14th, 2005, at 8:30 in the morning, my wife and I were seated alone with our two daughters in the waiting area at our pediatrician’s office. By all appearances, it was an average, ordinary day. Outside, the morning sunshine was perfectly complimented by a brisk New England chill in the air. Inside, Sydni was contentedly being breastfed in one corner of the room as Tari was immersed inside a child’s fantasy, building a block castle for Daddy.
It happened that fast. It was the last outwardly normal routine our lives would know ever again. There was no turning back now.
The doctor knew right away, without even examining my child. By 8:46am - just 16 minutes later - we were rushing Sydni frantically to the Emergency Room at Children’s Hospital Boston.
Within minutes of our arrival at the hospital, a CT scan suggested an outsized mass dangerously located inside the ventricles on the right side of Sydni’s brain. By 2:30 P.M., an MRI would confirm this parent’s most unimaginable nightmare: Sydni had the largest tumor the doctor had ever seen in a two month old infant. This literally froze me. Here I stood, in one of the most prestigious children’s hospital in the entire world, where logic dictated that they surely must have seen and treated everything imaginable. Yet this was a first for them? For me, that was the defining moment. My heart sank. I literally couldn’t breathe, falling to both knees as I hyperventilated while gasping for air when calling my mother to inform her of this shocking revelation. I knew this would be more than just an operation.
My crestfallen heart now told me I may actually lose my baby.
I kept searching into the eyes of the doctors, frantically looking for clues or deeper meanings into what was being unveiled at blinding speed. I was praying for some sign, any sign, or even just a hint of hope from the doctors. Alas, it never came. When the radiologist spoke up, nearly all of my optimistic expectations were grounded, for his straightforward description spoke volumes. He awkwardly uttered without really realizing he was speaking aloud: “In my entire career I have never seen anything shaped quite like it. It is ENORMOUS.”
He continued: “… and what amazes me even more, it has what I can only describe as tentacles that seem to reach out in every direction!”
14 years later, that still sends chills down my spine.
We were told the tumor was complicated to draw near and would be difficult, if not impossible, to remove. To make matters worse, this cancerous growth was precariously attached to certain portions of Sydni’s brain and wrapped dangerously around a gathering of major blood vessels.
By 9pm, I’d picked up Tari and was driving home. My wife stayed by Sydni’s bedside at the hospital. Sydni’s specialist from the Department of Neurosurgery was preparing his best team for her surgery in the morning.
All I kept thinking was: ‘What just happened?’
The very next day, Sydni underwent a 12-hour emergency brain surgery at Children’s Hospital Boston. My innocent child was but two months and one day old at the time. There is no sugarcoating this one: life as I once knew it was suddenly and without warning drawn into the very definition of a living nightmare.
Succeeding days passed blindly – no longer being measured in hours or minutes but seconds.
Without realizing it, sleep, food and work quickly took a back seat to real life. I no longer remembered or cared to look in the mirror. My attention was centered exclusively on Sydni’s survival — and in protecting Tari from any emotional trauma this heartrending experience may potentially cause her.
Thus began this father’s spiritual journey through faith.
Today - may 2019 (brain tumor awareness month)
Sydni’s crossing is a life-lasting journey. I marched over what I often call that ‘bridge of acceptance’ long ago.
My focus now as the father of this family is to embrace life’s detours and accept God’s ongoing challenges as opposed to running away from them. Sydni will never walk. She’ll never talk or eat, other than through her feeding tube. But: Sydni does talk to me every day — through her animated eyes and her energetic smile. My daughter and I do walk hand-in-hand together — each night in my dreams.
I could pretty much copy-and-paste Sydni’s challenges in any respective year. I could tell you about her countless seizures, or her sporadic breathing struggles, or how often she must be suctioned. I could tell you about the ongoing physical and emotional toll thrust upon our entire family. Or I could tell you that my daughter spent over 100 days in the hospital last year. She had six brain procedures between September 2018 and February 2019.
I could tell you that I updated her eulogy for the third time in late January 2019 — because I honestly did not know how much more pain and struggle and anguish my child’s feisty body and her determined strength of mind could endure.
But I could tell you this, too: I get through my days by over and over again reminding myself that life does not have to be picture perfect in order to be experienced as a most magnificent journey.
Stephen wrote this song, below, for Sydni. He has written and recorded other songs in her honor, which can be found on iTunes.