Liam (Part 3-- Operation)

Color key for the 'scoreboard'

As Liam went through surgery, waiting for the updates that came every couple hours or so soon became pretty anti-climactic. The first one was exciting—he was in good shape, the vitals are good; the OR nurse told us Dr. Baird said everything was going well. The next two updates, at about hours four and six, were the same. We were getting bummed we did not have more details, and they did not have an ETA on when they would finish.

When we had arrived that morning, the waiting room was full, bustling with kids awaiting surgery, for themselves or their siblings, and parents trying to keep the kids distracted and under control. It was tough to find a spot where we could both sit together comfortably at first—that’s how busy it was. Most of the forty or fifty seats were full, or at least there were only a few spots in the whole room where two people could sit next to each other.

One by one, the families completed their surgeries, collected their kids, and went home. And we waited. A sort of 'scoreboard' showed the status of each operation in progress. For hours and hours, we watched Liam's number remain green, waiting for it to turn yellow, indicating the surgery was ending, and the patient was in recovery. At 5 pm, the office closed, the lights were dimmed, the kids’ movies stopped playing on the big TV’s, and there were just three families still waiting. One of them, a little kid getting circumcised whose dad was pretty nice but clearly exhausted, finally finished up around 6:00 or 6:30 and wished us luck. He worked nights, and had been up all night before coming in to then wait with his son all day.

Scoreboard around 3 or 4 pm

Another hour went by, then our last waiting room-mates got to leave. This nice lady explained how her daughter was here getting her tonsils removed and some tubes taken out of her ears. Her daughter is eight years old, and has Downs syndrome. We had a nice chat as she prepared to finally go back to the Ronald McDonald house before driving home to Springfield the next morning. She estimated that she had lived at the Ronald McDonald house for about a year in total while her daughter had been in and out of the hospital for various surgeries, starting with serious difficulties at birth. She was really sweet and it was nice to see her finally get to leave with her husband, son and daughter.

This whole ordeal has taught me many things, but I think one of the greatest insights I’ve had is just how difficult chronic medical issues must be on families. The five weeks prior to surgery felt infinitely long. That routine of doctor visit, test, another visit, another test, waiting and waiting, being referred to specialist after specialist was just so taxing. The care was amazing in every instance, starting with our first visit to the primary care physician who just flew into action when he perceived we needed help. But even with that care, it has still been difficult. I can’t imagine how families who deal with these tough issues for months and years do it, and I have huge respect and increased compassion for them.



Darcie and I sat alone in the waiting room for another hour. I will admit, this was the only time of the day I felt nervous at all—and I mean at all. I finally started to get concerned with the lack of information and the amount of time this was all taking. Finally, we got our last update, at around 8 pm. The surgery had gone well, the bone flap and reconstruction of the orbit was complete, and all that remained was taking fat from Liam’s abdomen and injecting it behind his eye, to be sure it sat correctly in the newly created space, a result of carving out the bone which crowded his orbit. There had been some bleeding, but not enough to warrant giving Liam more blood, and they quickly got it under control. The nurse estimated another hour, or maybe an hour and a half and we’d be able to see Liam.

The only number for about 3 hours

We headed to the cafeteria for a quick bite of dinner, figuring we had plenty of time. We picked out some grub (Darcie got salad, I got Cheetos and we got a little mini pizza to split, and we both got Mr. Pibbs) and sat down to eat, relieved we’d get to see Liam soon, and that the surgery would soon be over. Halfway through the meal (if you can call Cheetos and pizza a ‘meal’) we got a call on my cell phone. Liam was waking up, and the doctor was ready to see us. She had finished fifteen to forty-five minutes earlier than the two estimates we had gotten. We said we’d run back, they cautioned us not to run, so we speed-walked.

Doernbecher Children’s Hospital is part of this massive complex of buildings at Oregon Health and Sciences University. There is OHSU, the Casey Eye Institute (where Liam got one of his tests), the VA Hospital, and of course the children’s hospital. They’re all connected to each other by walkways, bridges and skyways on different floors; there’s even a tram that takes you downtown… like a Swiss Alps-style tram. We got a little confused on the way back, and had to take a slight detour, but we got back pretty quickly. (Note to readers, do not ever rely on Kevin’s sense of direction for anything. Ever).

We waited only a moment before Dr. Baird met with us in a consultation room. Just going into that room, we felt the weight of this whole ordeal, and comforted each other. Dr. Baird explained that the moment they began the surgery, everything changed. First of all, right when she removed the bone flap at the side of his head, the brain was exposed. Which wasn’t good, because there should be three layers of protective membrane covering the brain. This was not meant to be a brain surgery, just a removal of a bony tumor and reconstruction of the bone, but now it was also officially brain surgery. Also, what they thought would be an aneurysmal bone cyst, or some other bloody tumor covered in bone tissue, was actually a growth of bone tissue caused by the continuous light pressure of leaking spinal fluid, due to the rupture in the membranes as mentioned above.



We were alone in the waiting room for a LONG time

The good news: this was not a tumor or growth that would come back, or would need future surgeries, or radiation treatment as we thought he’d likely need. Also, they did not have to go through his nose to relieve the pressure on the sinus (actually that would have been bad, likely causing further drainage of the spinal fluid out his nose). In fact, pseudomeningoceles (part of what Liam had) often manifest themselves this way, or by causing meningitis. They occur typically after brain surgery or a fracture of a bone in the skull that tears one or more of the membranes, causing the fluid to leak.



This also meant she had to do additional work during the surgery, ensuring the area around the brain stayed sterile, that the membrane was repaired, and there was more bone repairing that needed to be done to make sure the spinal fluid stayed around the brain. There is a fusing/sealing procedure she did to keep fluid where it’s supposed to be, but this procedure would often take a few days to fully set and be water-tight, so we’d need to do an MRI the next morning to see how the swelling was—too much pressure would make it tougher for the seal to fully settle.

The bad news: if the MRI showed too much spinal fluid pushing on the repaired area, and too much swelling in general in the area, she’d need to place a drain in his spinal column. This lumbar drain is similar to how they do epidurals—a little catheter that goes into the spine, letting fluid drain out as needed. If we needed to have the lumbar drain, Liam would need an extra couple days in the hospital to be sure everything was okay.

A new favorite hymn

It was a lot to take in, and I understood now why the nurses couldn’t give more details—they couldn’t exactly tell us the new diagnosis and procedure without raising needless concern—even panic. Even as Dr. Baird told us, face to face in a comfortable, quiet setting, Darcie and I were a little panicked—it was weird to be pretty sure of a diagnosis and course of treatment, then to hear it all got flipped around, but that things were good. We tried to think back to any time Liam, our little daredevil of a son, had any kind of trauma that could have caused this… He took a good spill mountain biking with me about four years earlier, but then he had gotten a shiner on his right cheek, with no impact near the site.

When we lived in West Jordan, Utah, the kids loved playing in ‘the pit,’ a dug out hole for a home foundation never built in the lot next door. Once Liam took a pretty good tumble and hit the back of his head on a rock, but that wouldn’t have explained the cause of the pseudomeningocele. In fact, Dr. Baird explained she had never heard of this condition manifesting itself in this way—with the pressure on the bones of the skull, pushing into the orbit and so forth. In the five or ten minutes it took Darcie and I to get back from the cafeteria, Dr. Baird had looked through the Hospital’s case literature and could see no record of this happening ever. I joked that this was a case for her scrapbook, and she said they really should publish the findings, it was a unique case. No wonder the different surgeons had not been 100% sure of what it was!

After wrapping up our conversation with Dr. Baird, we got to see Liam. He was coherent, but so tired. He looked amazing. His left eye looked just like his right one. You could barely see the sutures in his incision, and the incision was almost completely covered by his hair. We expected to see him all bandaged up, but the most alarming thing was all the wires and lines coming out of his body (IV lines, monitoring lines, chest sensors, catheter, etc.) The nurses commented on how polite he was, saying please and thank you after everything, no complaining at all.



Over 9 hours in, finally finishing!

From there, it was kind of tough, just watching him suffer headaches, violent nausea, and trying to rest. He spent the next 24 hours or so in Intensive Care, and it was really hectic. Lots of crying babies, residents doing rounds, multiple doctors consulting, checks all through the night on his progress. The poor guy just wanted to rest, and everything prevented it. Darcie stayed with him overnight, and I went home to spend a bit of time with the rest of the family and to get a little rest; I planned on doing most of the overnights after this first one.

Early the next morning Liam had another MRI, and it showed some pressure and swelling, though not as much as Dr. Baird feared it might show. However, it still warranted putting in the lumbar drain, as his eye had swollen shut and his head displayed considerable swelling (both of which were to be totally expected). They had a tough time attempting to get the lumbar drain installed—Liam was experiencing some pain in his legs, so they decided to give him more pain meds and get him rested up for the time being. They then scheduled time back in the OR, for him to get the drain procedure done with x-ray guidance and a little more pain medication than he’d had before.

Finally, around 4 pm, they got him into the OR and the procedure was completed very easily. Darcie and I took advantage of the OR time to get our meal in. Right as we got back to the waiting room, Dr. Baird came out to tell us the procedure was a success, and that we’d finally be leaving Intensive Care and going to our own room on the 10^th floor!

Once again we were struck by the care of the facility and everyone there. The night after the surgery, Liam was his nurse’s only patient, which was a real blessing, as he had several fits of nausea, and she was constantly monitoring his med intake and performance. All of the medications, being in and out of anesthesia, the trauma to the area of the surgery, and especially the issues with the cerebral spinal fluid pressure changes, and manipulating the membranes around the brain can apparently be really tough on your stomach, and it showed. Also, the act of throwing up put even more pressure on his head, which made things kind of spiral—the wrong way.

The foot of Liam's bed-- off to ICU

But he endured it all with so much quiet patience and amiability, I was truly amazed. The dropping in pressure of the CSF (cerebral spinal fluid) can cause really bad headaches, and Liam soldiered on, never complaining. In fact we often had to ask how he was, if he was in pain, if he wanted medicine, if he needed anything. He just quietly outlasted it all, with so much discipline and dignity. What an example—I will never forget it. It was just so incredibly inspiring.



Another thing that inspires me, perhaps most of all, is Darcie. I have written about my awe at the talents of the doctors, the compassion of the nurses, the gift of music and artistic expression, the wonders of technology, the faith of friends and family, and the resilience of Liam. But it all pales in comparison to the love and attention Darcie has shown as a wife and mother. She is the one who has been up and at it for 36 hours, yet she encourages me to take a nap while she keeps an eye on Liam for an hour or so before she finally goes home to rest for a night.

She is totally focused, knows all the medications, how much he’s had, and when, by names and amounts. She is right by Liam’s side the whole time; I thought I’d have to use physical force to get her to go home and sleep for a few hours. She has attention for every detail—the temperature of the room, the cleanness of his linens, how often it’s been since he drank or used the bathroom. She knows his pain ratings, and knows which medications seemed to work the best while inducing the least amount of nausea. She keeps him comfortable literally every minute of the day. She does it all without being overbearing or bossy, and is totally endearing to the nurses and doctors; she just creates such a rapport and can talk to anyone. I don’t know how she does it. It is perhaps more inspiring than watching Liam battle on. Our family is truly blessed to have her as our mom and wife!

Shortly after surgery... looking great!

As I type this, Liam is resting, finally, now a couple hours without throwing up or needing any real assistance. We have so much to be thankful for, in spite of the immense discomfort of the last couple days for Liam. He is making real progress, there is no tumor, cancerous or otherwise, and he is finally getting a little rest. Darcie has gone home to get some sleep after staying awake with him for what—36 hours? This seems like a perfect time for a break. Thank you again to all who have helped us through this so far, in so many different ways!

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Liam (Part 2-- Preparing for Surgery)

Love  this guy!

As we got closer to the date of the surgery, the family experienced some ups and downs. My work was demanding, but our store really started to perform in the month of March (which is great, since this ends our fiscal quarter, and we can use every bonus dollar we can get!) I also had some challenges at work—one of my assistant managers had to leave to relocate closer to his wife’s family, and of course leading a team means there's a bunch of challenges I won't get into right now. Let’s just say, the store was performing, but it was requiring a lot of my time and energy—working a handful of Sundays, performing interviews, and being very strategic and conscientious about how I spent pretty much every minute at work.

But, as I said, it was paying off, and at work we were making headway. At the same time, things around the house were pretty stressful, with Ethan working and trying to get the classes he wanted for school, and the three younger kids all doing their schoolwork at home through a state-sponsored online program. This was another of many little fortunate steps along the path we’ve walked these past several months… When we moved down here at the end of January, we felt that putting the kids in a home-school type of environment might be good, as it had been a long five months or so of me commuting from Seattle to Portland.

We thought it might be nice for the kids to not have the stress of a new school on top of this move, especially considering Corrinne and Liam will each be going to yet another new school this fall—Liam to high school and Corrinne to junior high. Also, in the fall, it will be nice for Corrinne and Annelise to be attending the same school—I think Corrinne in particular really benefits from having her big sister around. Although it has been a challenge for Darcie to coordinate schedules, keep laptop batteries charged, referee who gets what computer, oversee home lab experiments, correct papers, and pretty much work all day to make sure the kids are on top of their schoolwork, the kids haven’t had to miss any school due to the visits back and forth to the doctor. (Imagine how tough it would be to be the new kid, then miss days and weeks and come back with a big scar on your head?) Again, while we certainly couldn’t see it at the time we registered them, this has been a fortuitous step along our little detour.



Some of the swag sent by Microsoft

Another nice little benefit—my employer. Microsoft has just been great to us through this time. In fact, about a week or so before the surgery, three separate packages arrived at the home. One day while I was at work, I got a text from Darcie saying, “we got a package from Microsoft, can I open it?” The first day we were delighted to see that my boss and our market admin had sent Liam a year of Xbox Music Pass, knowing how much Liam is into making and listening to music of all kinds. It’s a really great service—check it out if you haven’t. Liam was stoked!

A couple days later, I got another text about another package. It contained many 8 by 10 autographed photos of celebrities who have done events with the company. My boss had worked with our organization’s amazing marketing director to get pics of people like Cee-Lo, Weezer, Shaquille O’Neal, Kelly Clarkson, Blake Shelton, Zac Brown Band, the Band Perry, and probably another 6 or 8 artists (my memory fails as I sit in the waiting room, typing up these thoughts). It was a great surprise, and even if some of the artists aren’t Liam’s favorites, he still knows and respects all of them, and hey, it’s just cool to have all those autographs right?

Finally, a third package arrived—a microphone signed by the rapper Macklemore and his producer Ryan Lewis! Totally huge surprise, and an awesome keepsake for Liam! My boss, the company, and my employees have all been amazingly supportive through this, and it’s been easy for me to hop on the bus or streetcar to meet Darcie and Liam for appointments downtown; just as convenient as something like this can be, anyway. Another little blessing that was unforeseen.

Ethan, Liam and I had a fun day the Saturday before Liam’s surgery. We hung out downtown, hit some shops, bought some records and CD’s, had a killer dinner at Lardo (with a name like this, it’s got to be good, right?) We then were 4^th, 5^th, and 6^th in line to see Tweedy perform—a band headed by Wilco frontman Jeff Tweedy and his son Spencer on drums. We were right up front, it was a great show and we had an awesome time; it was nice to share a moment together and not dwell on the stuff Liam had been dealing with.



The morning of surgery

The three weeks or so before surgery, when we had a date, but had no appointments or tests in the meantime, were excruciating. Most days, I’d just push it to the back of my mind—something to look forward to, to dread, to appreciate and despise all at once. It was easier to just work or eat or mow the lawn or do something, because the upcoming surgery was all I could think about when I didn’t have to think about something else. Some days, I was almost overcome with worry if I paused long enough to think about it. But most of the time I was comforted and reassured, through prayer, fasting, or just pondering all the good things I have to be thankful for, and everyone rooting and praying for Liam.

As I mentioned earlier, I’ve had to work a few Sundays, both because of demands of the job, and also to conserve some sick time so I could have more time with Liam after the surgery. A couple Sundays before the surgery, we were able to attend church as a family, and I was totally uplifted from the opening hymn, Lead, Kindly Light.

I’ve heard the song, I don’t know, a hundred times, maybe? But I had never really listened to it before this Sunday morning. I was touched by the words of John Henry Newman, an English missionary and priest in the 1800’s. The song’s message was perfectly appropriate, tailor-made, it seems for our situation:

“Lead, kindly Light, amid the encircling gloom; lead thou me on! The night is dark, and I am far from home; Lead thou me on! Keep thou my feet: I do not ask to see the distant scene—one step enough for me.”

We felt far from home, having moved just a couple weeks before Liam’s tumor was found. With two or three weeks to go yet before the surgery, all we needed was help getting through each day, each hour, each step. Learning that Cardinal Newman had written this while on a missionary trip while very ill in Italy, and myself having been a missionary in England, and knowing how he felt, really connected with me. The remaining two verses are equally as powerful and comforting; they talk of how the author hadn’t always lived as one who would be led by this kindly Light, they express gratitude for God’s blessings throughout his life, and they speak of angels of those he had loved and lost, now watching over him.

Every word of the hymn perfectly matched and comforted us in our situation. As we sang, the Spirit comforted me, and I felt led by the Savior’s kindly light. After we finished singing, I whispered to Darcie, “Did you read the words to that hymn?” I watched as she felt the same things I did, and I could see the effect the song had on her, just so powerful and comforting! I was asked to give the closing prayer in Church that day, and I just had this overwhelming feeling that God heard our prayers and was blessing us and leading us, and that he’d get us through this, ‘one step’ at a time.

Looking down, out the window from the waiting room

The night before the surgery, we gave Liam a blessing. Our Church has a program where every family is assigned home teachers (men) and visiting teachers (women). And every man and woman gets to be a home or visiting teacher as well. These members of the congregation, check in, support, comfort, befriend, etc., whatever is needed by the families. In our case, we had never met our home teacher, having just moved in, but we were amazed to find that our home teacher is not only a really nice guy, but an optometrist. And of course the thing that got us started on this whole journey was an eye issue.

Randy, our home teacher, came and assisted with the blessing, and we had a great experience together, enhanced, I’m sure, by Randy’s unique perspective and interest in Liam’s case. He even had a friend in optometry school who dealt with a tumor behind his eye before graduation, but was able to have it successfully operated on, allowing him to go on and fully recover and practice optometry. Just another little way we recognize we are not alone in our challenge.

The day finally came for the surgery, and we headed to OHSU. It was a beautiful, clear morning, and I pointed out the view from the I-5 bridge looking eastward—you can see the houses on the docks around Hayden Island, some neat little houses on the water, and when you look up the river, a great view of Mt. Hood in the distance. It is really serene, at least for one of the busiest stretches of freeway in the Pacific Northwest.

We got to the hospital about 20 minutes before our scheduled check in time, which was great because Dr. Baird had finished her first surgery early. We went into the pre-op area, and Liam got dressed in his flattering hospital gown. We helped him get all washed up and sterile and put him on his bed. They gave him a little IV cocktail to make him a bit less tense as he prepared for full anesthesia. Dr. Baird again ran us through the procedure, making sure we had no further questions. As a second doctor talked about the risks of the surgery (including blindness and bleeding), we noticed Liam starting to get concerned and comforted him. We had great doctors, and we had what felt like half the country praying for us. At about 11:00 a.m., they wheeled him into surgery as we wished him luck and gave him a last hug and kiss.



In good spirits, heading into surgery

They anticipated the surgery would take somewhere between three and six hours, depending on the consistency of this tumor—if it was pretty soft, it would go quickly. If it was hard, it would take longer. We settled into the waiting room, preparing for the first update, which would come at about 90 minutes into the surgery.

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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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