Liam (Part 1-- Diagnosis)

Liam the weekend before surgery

Liam is the family member who has the least hesitation about me sharing things about him publicly. And that is good, because he's also the one having much of the noteworthy stuff happen to him. You may know about the medical challenge he is in the middle of facing. I thought I'd write about it, in a few chapters. As I post this, I am sitting with Darcie in the waiting room of the Pediatric Surgery area at Doernbecher Children's hospital in Portland, Oregon. We just received our first update-- Liam went to sleep just fine, and they have started the work. Thanks to the dozens of people who have let us know they are sending good thoughts and prayers our way-- we feel them working! Here is how this whole thing started, at least from my vantage point...

At 11:18 a.m. on a Thursday in February, I realized I was having a remarkable day. Better than good or great… it was completely transcendent. The most notable thing about this consummation of awesomeness was that each little contributing factor was fairly normal—almost mundane. But it all came together to fill me with a sense of gratitude and wonder, way beyond what I ought to be feeling on a February Thursday, sitting on a crowded Southwest Airlines jet, just about to rise off the runway.

I was in Phoenix, about to head home to the Pacific Northwest after a four day meeting in Scottsdale. I’d gotten up early, shared a cab ride from the hotel with a cool guy from New York City, jockeyed for position in the Southwest corral, and found a coveted window seat on the left side of the plane, which was departing about 45 minutes later than scheduled. I had my red Beats Studio headphones on (courtesy of my old job, and a stint at a similar meeting, also coincidentally in Arizona a couple years earlier).

I cued up Beck’s latest album, Morning Phase, which had coincidentally won the Grammy for Album of the Year a few days before. As a long-time fan of Beck, I’d downloaded it almost a year ago, when it was first released, and have listened to it countless times. The album just kind of washes over you, beginning with the opening ‘song,’ which is really just about thirty or forty seconds of swelling strings that steadily sink in like osmosis, before giving way to strummed acoustic guitars laying out a cool, mellow, folky-but-not-too-folksy vibe. Keyboards and subtle electronic layers blend with stringed instruments of every kind, forming a wonderfully cohesive sound.

Crooked view out the airplane window

The album really grows and builds and ebbs and flows, like a cool coastal shore in the hot sun—occasionally waves crash, but mostly it’s just soft ripples and splashes and twists of current and melody. It is super ‘grown-up’ for a guy who penned not-too-grown-up lines like ‘I cold stepped to you with a fresh pack of gum/ Somehow I knew you were lookin' for some.’ To tell you the truth, I don’t even listen to the lyrics of this album much, ironically less than I do when listening to his funkier, good-time party-jam stuff. The music does the talking, and more often the whispering. It just invites you to swim along with its look at feeling and loss and love and relationships in every stage. It is a great listen, along the lines of Sea Change, a similarly themed album he released ten or twelve years ago.

With the first half of Beck’s album beautifully rendered and ringing in my mind, I marveled at the gift of creativity, given to many, but too rarely expressed. Just so many great songs and stories and sonnets, shared and unshared. I thought of some of my favorite artists, albums and songs, and had a feeling of gratitude for the gift of music, and for being born into a music-loving, music playing family. I thought of some of the songs and melodies I’ve stumbled through, and resolved to shape them a bit better, to refine and share them more often, even if it’s just with my family.

I also reflected on the meetings I’d attended with my relatively new employer, Microsoft, which I joined in June. That was a scary deal; since 1988 I’d worked for exactly three companies—one of them for just a year. Needless to say, leaving my last company after nearly 10 years, to take a pay cut and a step down on the ladder so I could start climbing a new one, was scary. But after getting to meet senior leaders and most of my peers for the first time that week, and seeing what the company is working on, and how we’re touching the lives of so many and helping people be more productive all over the world, I just had a feeling of calm and relief and peace. I was in the right place, and I knew it.

Ethan, Liam and me the weekend before surgery

The meetings were not shocking or amazing, in fact most of it was pretty routine. The accommodations were wonderful, but I had to share a room with another leader (something I haven’t done for work in like, I don’t know, 15 or 20 years). The content held my attention but didn’t floor me. The other leaders were admirable and impressive, but there was no one who made me gush with enthusiasm (yep, I’ve been to meetings that made me gush). However, it was all just consistently good, no hyperbole or over-selling. I didn’t win a TV or a console or a computer or tablet or GPS or get any swag that I’d need to claim on a tax form (I’ve been to lots of those meetings, in the ‘good old days.’) But it all came together to make me feel good and right and calm and confident; again, I knew I was in the right place.

As I sat on the runway before departing, the sun was beating down on my left forearm—I think I may have even gotten a tan line. Although we’d been indoors most of the week, we did get some time out in the hot sun, first for a ‘give-back’ event where we assembled bikes for kids who needed bikes, but couldn’t afford bikes. They came to this meeting, not knowing they’d be riding home on bikes provided by complete strangers attempting to do something nice. It was a blast! Some of these kids had never ridden a bike before, and they were 10 or 12 years old. Others clearly had practice riding the hand me-downs that were way too big for them; they were speeding all over the hotel grounds, reminding me of my first adventures on my very own bike.

We also had a few meals outside that week; in fact each morning I took my breakfast out on the terrace, soaking up that vitamin D and looking out over the desert around Scottsdale, right at the base of Camelback. I had been reminded all week of the time my much younger family had lived in St. George, Utah, where we could see Snow Canyon from our back yard, and hike, bike, and explore literally a red rock’s throw away. I also thought of the great Major League Baseball spring training games I had been to with my brothers and my dad, and how we tallied a count of Circle K stores for the whole Arizona trip (20-something?), and had the best fruit I’ve ever tasted to this day. (It was a grapefruit from a roadside seller, and it was just amazing!)



Looking out the window as the plane left the runway and climbed into the air, I marveled at how technology and creativity and ingenuity, intersected with the beauty of nature gave me a moment of joy, peace, comfort and awe. I felt like I got a glimpse into eternity, and saw good and growth and progress of all kinds stretching forever, in each direction, as far as I could see. I just knew God was watching over me, that He is real, that He knows me, and that He cares infinitely for me and my family.

It’s a beautiful realization, but it sure came in an unexpected way, didn’t it? A cab ride, a late, crowded flight, listening to ‘pop’ music, ruminating on a fairly typical work meeting, looking at a mostly barren desert as I flew home to a forecast of clouds and rain. There is no way I could deliberately re-create the feelings by lining up a chain of similar events, or do the same for someone else. I believe even the choice of headphones (they really sound amazing and help you hear music differently) and album were a factor in creating a mood where I was receptive to the feeling. I was so grateful, and so intent on retaining the experience that I hurriedly composed a text to myself to just capture the essence of what I felt. It was a gift! Not earned or expected, but certainly embraced and treasured.

Especially when I confronted the facts that awaited me at home.

Tried to capture amazing feeling in a quick text

Liam (now almost 15 years old) had an appointment with the doctor that afternoon; in fact I had planned on joining him and Darcie, but the late flight caused me to miss it. Through texts, as Ethan (age 19) drove me home, I learned the doctor was concerned about what he saw, and he ordered us to get Liam to the hospital for an MRI. The condition was not what Liam had gone in seeking help with, but something Darcie had asked him to look at. Basically, his left eye seemed to be protruding a bit. Pretty much everyone has an asymmetrical face to a degree, so that is not abnormal, but it seemed in the previous few months Liam’s eye had been changing. We really only noticed it when we looked at pictures of him spanning the past year or so.

Feeling nervous but hopeful, we took Liam to Oregon Health and Sciences University Hospital, up in the hills that overlook downtown Portland from the west. It is a great facility; in that visit and in the several since we’ve had amazing care and just wonderfully professional service in every instance. It’s kind of neat to drive to and walk around—it reminds me of the Ewok village up in the trees on the Forest Moon of Endor—big buildings built on hills, connected by skyways and bridges; there’s even a tram that takes you up and down, to and from the waterfront just south of Downtown Portland, almost a thousand feet below.

The family accompanied Liam to OHSU for the MRI. He endured it like a champ, keeping still and positioning as needed for a good 40 minutes as the tech took picture after picture. We were in good spirits, happy that Liam had done well, and optimistic that everything would be okay. I think we even went to dinner afterward, prayerful of course, and not making light of the events, but also happy to have a night together after my week away and the long day of appointments.



1st MRI Image: Tumor showing mass where it shouldn't be

The next day, we had another call, for more tests and another visit to the doctor. This was a pattern over about two weeks—a phone call, a trip to another doctor, followed by a phone call to schedule something else. All in all, between MRI’s, CT Scans, visits to the pediatrician, ophthalmologist, and two different neurosurgeons, visit to the Neurosurgery Floor at Doernbecher’s for pre-surgery baseline tests, I think he had more than ten appointments in just over two weeks, sometimes with only an hour’s notice—can you be to OHSU in 45 minutes?

Anxiety mounted, even though Liam had felt no discomfort. About a week after the first doctor’s appointment, we saw the MRI’s. He had been injected with a substance that illuminates the stuff we were looking for. The MRI shows the soft tissue—healthy and otherwise. As the doctor showed them to Darcie, she pointed out that while this growth was huge, a couple inches wide in spots, it did not seem to be malignant. It was pushing toward the brain, toward his sinus, toward his ear, and toward his optic nerve, and pushing his eye forward. With all that going on, I couldn’t believe Liam hadn’t had serious headaches, balance problems, vision problems, or any issues related to this growth. The doctors have all been surprised too.

Liam pretty much has the routine memorized—all the procedures they run him through to check brain and nerve function… Walking normal, walking on his heels. Following the finger around with his eyes, don’t move your head. Closing his eyes, being poked all over his face. Can you feel that? How about that? Stick out your tongue. Smile. Can you hear this? How about in the other ear? Of course getting tapped all over his knees and legs, pushing the doc away with his hands, pulling the doc’s hands toward his own chest, squeezing thumbs. It’s a routine he’s done once or twice in a row with different doctors, right after another, many, many times.

Growing into orbit, pressing on optic nerve, pushing eye forward

As you can see from the pictures, the MRI-revealed growth is pretty terrifying. What was even scarier was being told he had to have more tests—CT scans showing the bone tissue, as the MRI just showed the soft tissue and liquid-y stuff, at least as I understood it. The wait after getting the CT scan was pretty rough—almost a week I think, of just hearing we’re not exactly sure what it is but we don’t think it’s cancer. It provided a little comfort. Just a little.

Finally we were going to see a neurosurgeon, after he had been able to review the CT scan, MRI, and data from tests done with the ophthalmologist. We thought we were finally going to get some answers, as to exactly what this growth was, and perhaps a surgery date as well, as this neurosurgeon had squeezed us in, despite being booked full for three months. In the exam room, first an assistant ran Liam through some tests, got vital statistics, and made small talk. Then a doctor, a member of the real doctor’s team, came in and ran Liam through a bunch of tests, and let us know the head pediatric neurosurgeon would be with us soon.

He came in and ran Liam through all the same tests, checking for adverse effects to his vision, balance, hearing, nerve function, etc., all the stuff mentioned above. He explained that they thought this was an aneurysmal bone cyst, a spot on his skull where the bone had just kept on growing and growing over some kind of lesion, probably for years. Liam definitely needed surgery, perhaps multiple surgeries. He explained that the tumor looked like it had grown very slowly over a long period, and did not appear cancerous at all, but they would have to biopsy the tissue once they could get in and remove it to be certain.




Another one showing the proptosis (pushing eye forward)

We felt a bit dejected when the doctor told us he wanted to bring in another neurosurgeon to look at the scans, and that his entire team was working on the best course of action; how and where to operate. We had hoped to leave that appointment with surgery scheduled. The doctor he recruited specializes in cranial surgery for pediatrics, and he had personally recruited her to join his staff because of her expertise in this area. Once more, we had to go home and wait for another admin to call and make an appointment with yet another doctor. 

The following week, we got in to see Dr. Baird, the recommended expert. She was very thorough, very confident, and very receptive to questions and concerns. She showed us the CT scans (which we had not yet seen), and they clearly detailed the bone growth, really filling in the orbit and crowding Liam’s eye. She showed us the bone creeping, pushing outward, against his optic nerve, right up to the carotid artery, into his sinus, toward his ear, in toward his brain.

She detailed how she and her team (an assistant, the anesthesiologist, the anesthesiologist’s assistant, several nurses, and likely another neurosurgeon who would go through Liam’s nose endoscopically, along with his assistant) would proceed, where the incision would be, where on his head she would be operating, and all of the steps involved. They’d remove part of the bone around his temple, and go in and carve out the tumor. They’d try to repair the lesion and remove all that affected bone material. They’d go in through his nose using endoscopic methods to remove the bone crowding his sinus and nasal passages.

They would remove healthy bone from his cranium and put that in the lesion area for healthy bone to grow, reconstructing the orbit, and put fat from his belly behind his eye so it doesn’t sink back in to the socket. They might also use some collagen to have a good barrier between the un-sterile areas of the sinuses and the sterile cavity where his brain was… I think. It’s tough to keep track of everything they’re doing! Also, even at the time of the surgery, they were still not sure the tumor is an aneurysmal bone cyst, because it’s in such a unique location (they usually occur on bones in the leg or on the spine).

This one really shows the effect on his eye

We felt like we were in good hands with Dr. Baird and the other surgeons, and were relieved to get the surgery scheduled, for March 20^th, five weeks and one day after we first learned there was something wrong.

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