My worst interaction with technology most days had been a sick Windows laptop, and my best involved monkeying with a new audio system. Most of us view technology within the frame of our personal and professional lives: a company like Apple, an e-reader like the Kindle, or an operating system like Windows.
I had my view abruptly broadened three and a half years ago when my son Josiah was diagnosed with an invasive, mid-grade Astrocytoma Glioma brain tumor. Technology has never loomed larger in our lives, even though we felt surrounded by it before.
It was discovered after a six-month checkup when our pediatrician ordered an ultrasound of his head. Our doctor had some concerns about Josiah’s head size, coupled with the fact that he was a little behind on some milestones. Our pediatrician said this was just a test, and that he didn’t think anything was wrong. We went home worried, but it didn’t keep us up that night.
Sitting in a dark room the next day, watching the technician move the probe around, I was blown away by the uncluttered images on the screen. It seemed so much more advanced and clear than the ultrasounds we had seen just months before when my wife was pregnant with him.
Then the technician quickly left the room.
The next 72 hours blur together. A doctor who didn’t even take the time to introduce himself told us to drive across town to Le Bonheur Children’s Hospital — and not to stop to pick up clothes or even lunch.
When we stormed through the ER doors, a team of doctors were waiting for us. In the ER, they struggled to get an IV placed, then rushed Josiah to get a CT scan.
The picture given by the scan wasn’t good. The mass found by the ultrasound on the right side of Josiah’s brain was more clearly seen, but a second, equally scary problem was present: increased intracranial pressure. When the brain is under stress, fluid often collects on the surface, and the ventricles — the gaps in the brain where this fluid normally resides — can expand. In Josiah’s case, both were issues.
All of this information, provided by advances in medical imaging, was coming in so fast that it was numbing. The following morning, Josiah had his first MRI (Magnetic Resonance Imaging) scan. For people with brain tumors, the MRI is the best imaging technology on the planet. It shows details that are missed on other scans.
After the scan, the doctors met with us armed with images and information gathered from their tests. They were incredibly nice. The head of the pediatric neurosurgery team was a middle-aged, balding, soft-spoken man who had to push his glasses up a little too often. The head nurse sat down next to my wife Merri, and was playing with Josiah as the doctors settled in, exchanging glances. None of them opened the folders of paperwork they brought with them. No jokes were cracked; no small talk was required.
The news was bad: the mass was a brain tumor, and it was a big one. According to St. Jude Children’s Research Hospital, roughly 700 children are diagnosed with astrocytomas each year.
(That’s hard for me to swallow, even today. It’s a rare condition, but when your child gets the diagnosis, the low odds become your 100-percent reality.)
Less than 48 hours after getting the new scan, Josiah underwent a massive tumor resection surgery. The techniques and technology used by the surgeon were developed by his own father and his father’s colleagues, passed down and perfected through time.
After surgery, we were transferred to St. Jude Children’s Research Hospital, in our hometown of Memphis, Tennessee. Having the world’s best pediatric oncology hospital in your backyard is pretty handy sometimes. On our first day at St. Jude, we were asked if the hospital — which is really a research institution with a hospital out front — could keep samples of Josiah’s tumor and detailed records on his care for research.
I signed that paper without thinking twice. If not for the parents before us being willing to aid St. Jude in its research efforts, the doctors there would not know what they do about his disease. The cycle of information is in place to serve future waves of sick kids. I felt an obligation — no, a privilege — to help save those kids’ lives.
Over the next 18 months or so, Josiah underwent 16 rounds of chemotherapy, numerous additional scans, and physical therapy. In this whirlwind of medication, leg braces, and worrying about the single germ that could bring it all to a screeching halt thanks to the toxic chemo destroying our baby’s immune system over and over, I saw the very best that modern medicine can offer.
Today, Josiah isn’t cancer-free, but his latest scans show that his tumor is stable, with no new growth in two years. Thanks to the millions of dollars of treatment St. Jude has given him (without charging us a dime, by the way), today he’s a mostly typical four-year-old. He runs around the yard, plays with his sister and loves books with animals in them.
These days, thankfully, the parenting challenges my wife and I face are far more pedestrian.
We try to limit the time our kids spend in front of the Mac mini watching movies or playing with toys that light up and make noise. We think there’s something healthy about them spending lots of time outside and building with blocks.
It drives me crazy to see a family out at dinner or a sporting event and seeing the kids head-down, glued to iPod touches or whatever other handheld gaming systems are out there. I want to interrupt their time “together” and tell the parents how much they are missing by letting their kids be entertained by something with a glowing screen.
Of course, even as I write that, I feel a pang of guilt. How many little moments have I missed in my kids’ lives by checking Twitter on my iPhone while they play in the yard? How many hours have I spent writing or hacking away on my Web site while I should have been reading books to Josiah?
Technology saved my son’s life, yet has left him with terrible scars. It allows me to work from the hospital on days when I need to, but distracts me from being engaged at home. Technology is wonderful, but terrible, all at once.