* Post Surgery Struggle to Survive
Stephen Pecevich, a single dad of three in the Boston area, had his life take a complete detour when his youngest child was diagnosed with a brain tumor before she she was even 60 days old. Follow the story of how this devoted father found faith and strength on what Stephen calls “a life detour”, as we publish regular excerpts from Stephen’s own memoir, which will be available in its entirety in the near future.
“I do believe, but help me not to doubt.” (Mark 9:24)
Today was my worst day emotionally since you fought so bravely through 12+ hours of invasive brain surgery on Saturday. I spoke with Oncology and they informed me that your tumor was a rare Germ Cell Tumor called an Immature Teratoma of the brain.
Apparently it develops from early, premature cells which make up bone, cartilage, teeth, skin, etc. In your age group, I was told that this form of cancer is rarer than rare. Out of every 100,000 teens, less than 1 child has developed this form of cancer. Now factor in your newborn age, and its rarity is off the charts. Your lead oncologist believes the tumor was probably already growing while you were in Mom’s womb.
At present, in view of the fact that you have experienced additional bleeding from the time surgery ended, at this early stage of survival, Oncology is not sure whether or not any residual tumor still remains within your brain (that’s also why they have been unable to get a clear MRI picture).
Additional testing did reveal that your spine is clear of any tumor, so that was hopeful.
Nonetheless, in order to even settle on a next course of action, Oncology must first research world medical literature. Why? Because so far there are just two known case studies in the entire United States which Children’s Hospital has been able to reference. I’ll say that again…there are just TWO known case studies in the entire United States which the most prestigious children’s hospital in the entire world has been able to reference.
My dear God! What are we facing?
Past experience shows that surgery is not enough with this form of destructive, malignant, brain tumor because germ cells tend to spread aggressively. On account of your neonatal age, I was advised that radiation therapy is definitely not an option. Chemotherapy will depend upon the status of your other organs (which will be influenced by how well you recover). I asked your oncologist if a child your age could even handle chemotherapy and she was quick to offer up “how resilient children can be”. She said it will take at least another week to gather additional data on this rare tumor…so I will hopefully know more by next week.
Last night you experienced 16 seizures. Sixteen!
Most were five to fifteen seconds in length. But one lasted twenty minutes, which was most troubling. Following that news this morning, one of your neurologists confirmed that you did in fact suffer brain damage. The damage is definable along the front left portion of your brain. Or, in one of your neurologist’s precise words, “It’s the region of the brain which acts like the conductor of an orchestra. It tells your body and organs when and how to breathe, to swallow, to put one foot in front of the other, and so forth.”
Daughter…I didn’t have to read between the lines. Your neurologist’s sorrowing eyes spoke volumes enough. Her message was loud and clear:
Should you survive, you may not have a quality of life. (I cry as I type).
But that matters not at this beginning stage of the journey. No, what I pray for instead is that your fragile body will keep on fighting. Be strong, Sydni! Do not lose that determined spirit to live. Here is my pledge to you on this day: as long as I have a breath in me, I will be your hands to eat, your feet to walk and your mind to think. All I ask in return is that you give me the opportunity as a father to be there for you. Hold on steady to the wings of those angels, my dear daughter. And with God’s help I will give you my all. Just please, don’t leave us. I beg of you, hold on. Don’t leave me just yet. It’s too soon. Please, dear God, help me. “I do believe, but help me not to doubt.” (Mark 9:24)
On Angels’ Wings Sydni – On Angels’ Wings!
I love you with all my heart!
I woke up this morning feeling thoroughly ashamed. Here I am centering my near-term reality on negativity, when all the while you are fighting the good fight and defying every single long shot odd imaginable in order to stay alive. IN ORDER TO STAY ALIVE!!!
No, no more! My faith is resolute. I do believe in miracles. I absolutely do have faith in God’s Greater Plan! You stay strong my angel!
Today, Mommy, Tari & I left you for a few hours while relatives stayed by your side. I am trying to maintain some semblance of normalcy in Tari’s life at this early juncture. So we took your sister to see “Sesame Street Live”. I can’t speak for your mother but I’ll come clean myself. I cried nearly every second each time Tari wasn’t looking my way.
Seeing so many young, seemingly healthy children literally knocked the wind out of my sails because it reminded me exactly how you have not been given a chance at life. On the other hand, I couldn’t let your sister witness my pain. I just couldn’t. So every time she laughed and smiled with excitement, I took a deep breath, wiped my tears and then I tried to simulate matching happiness & delight.
I do accept our new reality, Sydni. I honestly do. That said, today was a fitting test. I rapidly realized, the act of simply being faithful will neither eliminate my overwhelming pain, nor comfort my forbidding heartache. Hard as it may be, I must somehow rise above and not let those heartbreaking feelings rule over me. And they will not. So let it be written. So let it be done!
Meanwhile, on an added up to date note, you experienced a good night. Your breathing was more controlled and the Phenobarbital appears to be containing your seizure activity. When I visited with you, your color was excellent and all vital signs were strong (i.e., for what I will call your personal ‘baseline’). You stared directly into my eyes as I sang a song to you…oh how the purity within your gaze did melt my heart!
Stay strong Sydni. Until we see tomorrow…sleep well. I pray to Our Father Who Art in Heaven may you sleep well tonight.
On Angels’ Wings Sydni – On Angels’ Wings!
I love you!Dad
Stephen Pecevich is a former
financial services professional,
loving father of three,
songwriter, and poet.