Six years ago, they told us what no parent wants to hear.
“Your son has a tumor. Stage four.”
We had just celebrated Vincent’s first birthday. He was almost walking, learning his first words.
Making sense of the treatment schedule was like deciphering a grid containing every bus route in the city. Our movements were now choreographed by rows and columns of fine print.
Vincent was on more medications than we could count. Most were high-octane cocktails with lengthy names, but the one he hated most wasn’t one of those. It was the tiny yellow feeding tube that went into his stomach through his nose.
To prevent his squirming fingers from tugging on it, the tube had to be securely taped to Vincent’s face, neck, and clothing. Sometimes his arms were locked into restraints that kept his elbows from bending, so that he couldn’t reach his own nose.
For Rebecca and me, the enemy was cancer. But from Vincent’s perspective, his enemy was that tube.
One night, we were home without medical staff. Vincent refused to sleep and Rebecca was up with him into the morning’s wee hours. I pretended to be useful, but by 3 am, my eyes wouldn’t stay open. Additionally, I have what Rebecca terms “daddy hormones,” meaning I can sleep through any noise my children make.
Just after 4, she gave me an assignment. I would be in charge while she went to the store for some Benadryl to help us all sleep. All I had to do was hold the fort for 15 minutes. I accepted my mission as she scooped up her keys.
When Rebecca returned exactly 15 minutes later, she was greeted by the sight of her son sitting up proudly in bed, smiling triumphantly, clutching the tube in his fist, having removed it completely from his body. Next to him was yours truly, thoroughly asleep as the the tube’s nasty contents spilled everywhere.
Needless to say, I was in the doghouse. But Vincent was thrilled. He had defeated his enemy. The nasogastric tube, the bane of his existence, had been vanquished at last!
As it turns out, Vincent would never need to battle another feeding tube again. That same day, we learned the cancer had spread to an extent where the tube was feeding the tumor more than Vincent’s body. No wonder he yanked it out!
Without nutrition, the doctors gave Vincent 24 hours to live, but they underestimated our little warrior. He lived for another 11 glorious days—even beyond the date of his projected funeral. The additional time time gave family and friends an opportunity to say goodbye to the kid whose name means “victorious.”
When all was said and done, there were only two things Vincent cared about. He wanted to stay with us and he wanted that tube gone.
Turns out he got both for a little longer than anybody expected. Happy Birthday, bud.