Something happens inside a person's soul, I believe, when they experience tragedy of any kind. We realize that we are not in control. We feel more helpless than we've ever felt. Sometimes our very worldview gets turned upside down. In my case, my faith (which is essentially my way of life) wasn't so much turned upside down as it experienced a vital, permanent shift. Like looking at the same world, the same family, the same God, but through a completely different lens. It felt like a crucial piece of information had been revealed to me. This information had always been true - this had really always been the way things were, but I had been unaware of it (consciously or otherwise). The truth I realized was this: I was not in control of life. Never had been. And there were no guarantees.
This is how my sweet boy looked at age three - the age he was when his doctors diagnosed a neurological disorder he'd been born with. He had had a host of relatively small medical problems since birth - colic, skin tags, a heart murmur, a speech delay, and crossed eyes (which resulted in him getting glasses, using eye patches every day, and eventually having two surgeries on his eye muscles to correct the problem). I had sort of gotten to the point where I figured that we might never know what was going on with him - there are so many disorders that have never been discovered or named; I just figured there was some little quirk that made my son the way he was. And I didn't care. I loved my precious, sweet, funny little boy just the way he was, and I planned to just take one day at a time and deal with his needs as they presented themselves.
Here's my little cutie about a year after his diagnosis. His disorder (neurofibromatosis type 1, NF-1 for short) is not life-threatening; it results in the growth of small, usually benign tumors throughout the body. These tumors only cause problems if they block blood vessels or lodge in joints, causing pain or immobility. Or, as in my son's case, if they grow on a person's optic nerves. When R. was diagnosed with NF-1, his neurologist recommended annual MRIs to keep watch on those vulnerable optic nerves. A year passed, and at the next scan, the doctor noticed one optic nerve getting thicker than the other. A tumor was forming.
Our doctor advised us that this looked like a trouble spot - a tumor beginning to form - and said we needed to scan again in six months this time, to see how fast it was growing. At the next scan, the tumor was indeed larger, and the neurologist said R. would need chemotherapy to stop the tumor's growth and prevent blindness in that eye. Surgery was not an option because the optic nerve is such a delicate area, there would be no way to remove the tumor without damaging the nerve and causing blindness. Thank God the tumor was (and is) benign, not an aggressive malignancy. Still, R's vision was in danger, and these types of tumors, we were told, are unpredictable. Sometimes they begin to form, then remain stable for decades, even for a person's entire life. Sometimes they grow for a while, then inexplicably "burn out" (stop growing), and even recede on their own. Sometimes chemo doesn't work. Even the experts are in uncertain depths here, they said.
R's tumor had shown up in less than a year, and grown enough that it needed treatment - now - in less than six months. We were dealing with an unusually fast-growing tumor. There were all kinds of questions: should we choose chemo? Should we do both chemo and radiation? Radiation in such a young child could be disastrous, potentially causing cancer or other malignant growths later in life - as early as his twenties. What if chemo didn't work? If the tumor was allowed to grow large enough, it could possibly cause compression problems on R's brain, maybe even threatening his life. Would he lose the eye? How would we tell our son we had to sacrifice his eye to save his life? He was only five, for heaven's sake! Not even in kindergarten yet. My heart broke.
(R., circa 2009, age five. Location: Cabo San Lucas)
We consulted with multiple experts - child tumor specialists, oncologists, radiation oncologists, geneticists - and decided chemotherapy would be the best course of action. Now my son would be facing a potentially dangerous surgery to place a central line in his chest, in a vein near his heart, with a port to the outside of his body (called a Hickman catheter). It would be through this line that he would receive his chemo drugs. It would also need daily flushes of heparin-infused saline solution to keep it from clotting off, and daily iodine swabbing and fresh dressing applications. We were told that the typical protocol for this type of tumor was ten consecutive weeks of chemo, one day per week - a phase called induction. After that, we would do another MRI and see what the results were. I began to pray more earnestly than I ever have...
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