DATELINE: Riley Children’s Hospital, Indy, 24 May 2006

Hanging with daughter Em while she goes through annual diagnostics and check-up with pediatric oncology dept. It’s our annual summer ritual that reminds us of that fateful hot July morning (3 July 1994) when I felt a lump on her abdomen while changing a diaper (I saw something move under her skin as she arched her back). It’s a weird sort of backward temporal connectivity, this annual pilgrimage, which we first made at Georgetown’s Lombardi Clinic, then Hasbro Children’s in Providence for seven years, and now our first year at Riley.

Riley, so far, has impressed me much. We went through some diagnostic drills with Kevin, my eldest son, whose surgery next month will see me spending a week here, so today’s visit is sort of a prelude. Like our prelim visit with Kevin, it’s an assuring experience. I have never seen a facility that’s more efficient and--on that basis--pretty kind to the patient and family.

For example, Riley today not only gets us in to see the peds onc doc, but packs in the pulmonary function test and EKG/echo all in the same 2-3 hour block. Frankly, that was always a series of trips in VA and RI, totalling about 10 hours of effort. With travel, this whole deal will wrap up in less than five.

Em is now a 12-year cancer survivor, which is a strange claim for someone only 14, but there it is. If things go according to plan (and Mark Warren and I do plan), then we’ll shoot to generate a “vol III” next year to round off the presumed PNM trilogy (either with Putnam or others who’ve expressed interest), and then we’d tackle the 200k manuscript (already edited down from about 500k) still tentatively titled “The Emily Updates” (referencing the fact that it sprang from a series of long weekly emails I sent to a list of about 250 people back in 1995-96. The updates kept family and friends in the loop on the final twelve months of her chemo regime, plus provided a reconstruction of the diagnosis and first six months of therapy.

The goal of that original writing was to provide Em with a diary of that experience, something we figured she’d want and something Vonne and I assumed would be hard knowledge to keep (not just the facts, but the knowledge) because--of course--it’s human nature to try and block it all out over time (who wants to remember nightmares?).

What it becomes with Mark’s help is yet unclear. So far he’s only said that we’d have to find a way to capture Vonne’s voice in the text, because Mark, upon reading the manuscript, quickly came to the conclusion that it was a highly self-censored affair--in effect, a brave and polite front put up by me in full, damn-the-injections-and-full-speed-ahead mode (I was insanely optimistic throughout as a sort of emotional self-defense mechanism, determined as I was to be the father of the single best performance of a Stage-IV/DD-protocol-armf-by-a-child-with-a-favorable-Wilm’s-Tumor-histology known to medical science). How we capture the underlying tension both within the marriage and without (relations with both relatives and friends were put to the test--and don’t even get started on strangers …) is the challenge of completing the manuscript’s implied potential to be about so much more than the story at hand. Because ultimately the crisis dynamic is simply a way to explore marriage, love, parenting, and--most importantly--strategic planning under conditions of great stress, and therein lies the universal story.

Sitting here years later, I am still energized by the tale. It’s just such a huge part of my life--probably the best and worst months I’ve known to date. I would go back there in a heartbeat, but likewise would give just about anything to avoid going through something like that again. The memory, now distant, is mostly about remembering the incredible immediacy, and the sense that every decision cast an enormous shadow over all our lives.

As Mark likes to point out, it’s where my character of the grand strategist really was born. Prior to that I did great work sometimes, and good work nearly all the time, but nothing really visionary because--quite frankly--I had no vision. That capacity had to be drawn out of me. I had to be melted down in the crucible and found not just wanting--but having. That path of discovery just about ruined my personality permanently, came close to killing my marriage, came even closer to wrecking my career, and yet somehow made me the thinker I am today. It was THE System Perturbation for the horizontal scenario that has been my life, marriage, and career since.

So, strangely, enough, as tense as these annual sojourns are (Who in hell wants to discuss “late effects” and “secondary carcinomas”? Especially with a young teenager?), they are a huge touchstone for me personally. Children’s hospitals are like my secular cathedrals. I worship everything they represent in terms of effort, spirit, and function. They form my family’s connection to the past and the crucial link that’s allowed us all to both survive and thrive in the aftermath of that strange adventure--now more than a decade past.

And I say none of this with self-assurance. I know for a fact that my life would have been very different if Emily had perished from her advanced metastasized cancer. I know full well what the gift is, and that brush with a child’s death (not ours, thankfully, but so many around us in that bizarre enclave) informs the way I think, the visions I pursue, and the sense of responsibility I have in my work toward not just my kids but anybody’s (because they’re all somebody’s kids).

Actually, the experience is much like the inner peace I gain from church, as strange as that sounds, because both on the surface and deep within the two experiences have almost nothing in common--except that sense of vigil which I’ve always loved about religious ceremony (the sense of expectation of the profound).

Then again, who am I kidding? That sort of hazy, gauzy look back is so indicative of why I had to write the updates in the first place. In reality, the entire experience was incredibly trying from start to finish. Hell, I had migraines sometimes 4 times a week! And there’s nothing quite like extended stays in children’s hospitals that make you feel like your permanent zip code is located in Loser Village. The burn-out look in the eyes marks those lives “lived in quiet desperation.” Why quiet? No one wants to hear about your f--ked up kid, trust me. People can’t stand hearing about illness in general (who can blame them?), but kids fall at the bottom on that not-to-hear list.

Amazing how you blot that out and recast all the unpleasantness as ennobling and triumphant. Makes me realize why Mel Gibson wanted to make that movie the way he did. Reality sucks, memories (assuming survival) are so much better.

Anyway. It’s enough now just to brush by other anguished parents putting in their own time. That’s all the refresher course I care to take, knowing that eventually, we all come back to these places--with parents, with siblings, with spouses, with kids.

Which reminds me: after this conference I need to fill out our annual report to the Wilms’ Tumor Study Group--our analytic connection to those that follow and a small repayment to those who made the effort all those years before we showed up.

Across this pokey day of sitting in lobby chairs of various sorts (I fly to DC tonight to spend some time with CIA mid-level types and a conference of defense sector CEOs tomorrow), I catch up on old stories I’ve been carrying with me since the last trip (ah, but the garage is finally organized and shop vac’d!). Yes, they are WSJ heavy, and I aim to correct that soon enough, as I’ll explore having other major pubs sent directly to the new house (something I’ve avoided doing so long as we were imprisoned in the apartment).

Still, if you only have one pub to live on in your forties, the WSJ is hard to beat.