Our Story: Take One

Fergus is doing great these days.



The story of Fergus' diagnosis, treatment, and its reverberations through our life can be told a hundred different ways. Leukemia is so large, elephantine, that it's impossible to capture the whole thing from one angle. You have to come at it again and again from different angles, so you end up with something less like a narrative and more like a mosaic or pastiche, or like a cubist portrait.

When you put all the pieces together you get something that approaches our story, but still doesn't fully convey its essence. And even though some of our friends and family probably mumble under their breath, "Enough with the leukemia talk already," we're still trying to figure out what hit us on November 29, 2004 (Diagnosis Day), and how it has changed/is changing/will change our lives.

So here's one part of the mosaic, this time not even written by me or Lauren. It's a story published in our local paper last fall, written by one of its editors, Susan Allen (and thanks, Sue, for letting us re-post the text here). I'll try to come at this from different angles in the future, but this is a fine start:

Article published Sep 17, 2007
Leukemia hasn't daunted 7-year-old Fergus Ryan

By Susan Allen, Barre-Montpelier Times Argus editor

EAST MONTPELIER – Seven-year-old Fergus Ryan has pulled off the greatest magic trick of his young life.

After being diagnosed with acute lymphoblastic leukemia in December 2004, and spending more than two years undergoing chemotherapy, endless trips to Fletcher Allen Health Care, 18 spinal taps and 3,656 pills of one kind or another – he smiles, jokes and looks like any boy next door.

It's magical.

"Want to see a magic trick?" he asked last week, racing through the dining room of his family's East Montpelier home, hunting for a white gift wrap bow that's part of his act. The curly bow "magically" turns into a tight tied bow while the viewer's eyes are closed.

"Where'd you learn that trick?" he is asked.

"From Marko," he replies, referring to central Vermont's Marko the Magician who performed at Fergus' party to celebrate his last chemotherapy treatment on June 27, 2007. One of his anesthesiologists was also a magician, his mother Lauren notes.

Lauren Quinn, a veterinarian at Onion River Animal Hospital in Montpelier, recalls the ordeal of discovering that her son was facing a fight for his life.

The first signs appeared in October 2004, while attending a wedding outside Vermont when he experienced a fever and stomach pain. The third day, when the symptoms continued, she and husband Rob took Fergus to a pediatrician, who conducted blood tests and found everything normal except some anemia.

Back home in Vermont, Fergus continued to bounce from healthy and happy to complaining about pain and spiking an occasional fever. One day he began crawling because of pain in one leg; he toured the Montshire Museum that day in a stroller and experienced significant pain on the ride home.

Tests showed his white blood cell count normal, but Fergus' doctor advised Lauren to take the boy to a hematogolist (blood specialist) at Fletcher Allen Health Care about the anemia.

"I had a weird feeling about this," she recalled of that visit on Nov. 29, 2004.

The hematologist ran tests, then left the room to review X-rays and blood slides. He took a long time returning, and Lauren and Rob "assumed he was really busy being with sick kids."

"He came back and we knew right away … he said I really hate to tell you this …" The diagnosis was leukemia, Lauren said. "I remember feeling kind of cold. I just felt icy."

Lauren didn't cry for four days. Instead, she shifted into action, calling a doctor at Dana Farber Cancer Center in Boston to talk about treatment options and going online to research the disease. That night she cuddled Fergus, thinking about how his life would change the following day when he was admitted for chemotherapy and officially became a "sick child."

"I thought, 'He's so healthy and normal. What if I just put him in the car and drive away?'" she recalled.

Fergus was diagnosed on Nov. 29, admitted for his first hospital stay on Nov. 30, and started chemotherapy on Dec. 1. That's been his life off and on until June 27 of this year, when he received his last treatment.

"The first time I cried was four days into it," Lauren said. The boy was anxious about the spinal taps and blood draws; he cried but held still throughout his medical ordeals. At the end of the one session, when he was allowed to choose a "prize" for himself, he instead picked a little pink doll to give to his 18-month-old sister Norah.

Lauren Quinn finally broke down.

The couple spent the next 2-1/2 years alternating work schedules, child care, and trips to the hospital (where they brought a lamp and quilts from his room at home to make him more comfortable during his stays). Friends brought meals to the family three nights a week.

Fergus remained healthy looking, but steroids that were part of the treatment wreaked havoc on his emotions. He'd laugh hysterically, then sob. He had food cravings – many kids in this situation crave salty junk food such as chips, but Fergus craved spaghetti and meatballs. His hair thinned and the curls grew coarser, but he didn't go bald, Lauren said.

The treatments were an ordeal.

"Fergus did get a port placed under his skin for all of his chemo," Lauren explained in an e-mail. "It was a central line down toward his heart. To access it, the skin was numbed and a needle was pushed through the skin into this little rubber diaphragm. Fergus dreaded port accesses for most of treatment, and needed a lot of help holding still. By the end he was a pro, and could sit nervously while the needle went in. He claimed he always felt it."

The couple found the experience "a huge challenge," but learned to communicate better and deal with the stress.

"We had to be more tender because we each grieved differently," Lauren said.

Every Sunday, she said, after Fergus had returned from a hospital stay, they'd put on fun music and the whole family would dance for half an hour just to reconnect and burn off the tension.

The family's health insurance covered most of the expenses, which Lauren said was a relief because many families have to fret about the bills during a child's illness, adding to their burden.

Lauren's brother who lives in Seattle wanted to help in some way, and began running in triathlons to raise money for the fight against childhood cancer. Lauren was inspired and she, too, began training for the 2006 Team in Training triathlon (visit www.teamintraining.org for information) in Memphis – and raised $21,000 toward the effort.

Lauren and Fergus took another important step forward in the fight against childhood cancer by traveling to Washington, D.C., in June to attend a national rally for federal funding for the fight against childhood cancer and passage of the Conquer Childhood Cancer Act. Families came from across the country to tell their personal stories of cancer; they asked to meet with their congressional members of staffers.

Lauren and Fergus were the only two from Vermont – and they met personally with Rep. Peter Welch (whose wife died of cancer) and Sen. Bernie Sanders, who signed onto the cancer bill that very day. They also met with a Leahy staffer. Lauren learned last week that Welch and Leahy, too, signed onto the legislation.

Lauren said that in 1967, only 5 percent of children with leukemia survived; now 85 percent can survive. But that figure has leveled off and families are hoping to move research and survival rates forward.

Today Fergus is in long-term remission and doing well. Lauren and Rob worry about a relapse, and confess to occasionally stressing every time the boy – or even his sister – complains of leg pain.

"Every now and then something will happen and I'll get that feeling of being punched in the stomach," she said.

While the experience has been an ordeal, Lauren said there has been a positive side to Fergus' fight.

"It's enhanced our enjoyment of each other and our appreciation of the small daily pleasures," she said. "We will have these moments, the kids are laughing, and Rob and I find each other looking at each other and thinking, 'This is a great moment.'"

Recently she was sitting in the yard looking at the view and imagined Fergus walking up, home from college or his life away, and having a beer and sharing the view.

"I burst into tears because I so desperately want that to happen," she said. But, she reminded herself, "Nobody has that guarantee." Even for cancer-free families, life is a gamble.

"It's been an incredibly hard two years, but on the other hand it's been a delightfully wonderful life with our children for two-and-a-half years," Lauren said. "We've had a good time and we've really enjoyed each other, and we still do. We're more focused on the present."

Lauren said that recently Fergus was watching a video on cancer and looked away as the announcer talked about those who have died of the disease.

"Will I be a survivor?" he asked his mother.

She replied, "You already are."

Tomorrow: Training Climb Two

Tomorrow afternoon, JohntheClimbinggMentor and I are meeting at Vermont's Smuggler's Notch (basically a pass on the shoulder of Mount Mansfield) to do some more training: crampons, ice axes, and ropes. We're approaching from opposite sides of the Notch, climbing up the closed-in-winter part of the road (highlighted in yellow).



...If I'm going to stay on track with my training for the May 25th Vermont City Marathon, I also have to run 17 miles tomorrow.

Somehow.

Glissading down a snowfield with an ice axe in my hand sounds like more fun.

For the Record, It's Sugar Time in Vermont

Photo appropriated from JDS at False 45th.

I (Still) Keep Seeing This Shape

Have I mentioned that we've had a lot of snow this winter in Vermont? Two and a half weeks ago I alluded to a haunting sense of Rainier-ish familiarity I was getting from all these piles of snow. The feeling hasn't gone away.



Even though this looks fake, this is my view out the back door these days. I swear Mount Rainier is stalking me.

Meet the Team: Dancing Bob

Currently there are three members of our climbing team: Rob, Bob, and John. Here's a brief intro to the guy my kids call Dancing Bob.



I've known Bob for years and years, and a close look at our past accomplishments will tell you something about how prepared to climb Mt. Rainier we are:

-We worked as a team in the late 1980's to create the wondrous Sputnik-like party treat known far and wide as "Cantelope-and-Carrots."
-Celebrated Bob's 30th birthday by flinging ourselves into a Canadian abyss with nothing but a stretchy cord wrapped around our ankles.
-Worked as part of a small team in the mid 1990's to curate what was then known as the Thursday Evening Drinking Club at Seattle's Virginia Inn. Wrote A.E. Housman poems on the bathroom wall (c.f. "Terrence this is Stupid Stuff").
-Successfully summited Vermont's Bald Hill (vertical rise approximately 200 feet), Summer 2003, despite occasional clouds of black flies, exposed roots and stones on the climbing route, small children in tow, and fierce summit winds of 5 to 10 MPH.

Known for his joviality (except when he's hungry) and perseverance, when Bob was shown an image of the Mt. Rainier climbing route, he said:

"HOLY F%&*, IT’S STRAIGHT G*& D^%$ UP!"

When confronted with the list of possible things to pack for the climb, this paragon of fortitude responded:

"There it is - the poop bags - my biggest concern, having to take a dump at 14,000 feet."

I mean, never mind the fierce and unpredictable weather, or the hidden crevasses, or the altitude sickness, or the fact that people, you know, occasionally die on Mount Rainier (sorry Michele and Lauren). Bob has other worries.

"…it’s just that you get up before dawn, start hiking up this huge ice cube, then it’s six-ish and well, time to go. . . ."

Recently, about training for the climb, he was more succinct:

"My legs hurt."

All in all, he'll be a reliable counterweight comrade to have on the line when I fall into that bottomless crevasse. Thanks for doing this Bob!

I've Been Seeing This Shape...

Lately I feel like the Richard Dreyfuss character in "Close Encounters of the Third Kind":

"I know this sounds crazy, but ever since yesterday on the road, I've been seeing this shape. Shaving cream, pillows...Dammit! I know this. I know what this is! This means something. This is important."

Except this is the shape I keep seeing:

In the Right Light You Look Like Shackleton

Doctors played your dosage like a card-trick.
Scrabbled down the hallways yelling "Yahtzee!"

One of the small pleasures about Vermont in the wintertime, if you're trying to get in shape, is the long hours spent running on a treadmill. Sure, it's tedious. But it's also at least sort of meditative and, for me, provides an opportunity to drown out the awful Quiet Riot and Guns n' Roses that they play at the gym with an iPod and some newfound music of my own.

Sometimes this means elaborate, embarrassing, time-consuming Rock and Roll Fantasies—the highschool talent show revenge fantasy, the peculiar dream of busking on a Montpelier street corner with my accordion and a handful of Billy Bragg songs. But also it means I have a chance to give a close listen to new musical discoveries and/or music that my kids would never abide on the stereo at home. One of these new pleasures, for me, is a Canadian band called The Weakerthans.

And, okay, they're somewhat derivative, musically, but they're also word-heavy, and playful and literate, which can distract from the hamster-wheel effect of treadmill running (and from the aforementioned embarrassing fantasy scenarios). There's the song inspired by a Martin Amis novel, the song that imagines a 20^th century explorer dining with Michel Foucault ("I must say that in the right light you look like Shackleton"), and the plea from a cat to its owner:

Why don't you ever want to play? I'm tired of this piece of string.
You sleep as much as I do now, and you don't eat much of anything.
I don't know who you're talking to—I made a search through every room,
But all I found was dust that moved in shadows of the afternoon.
And listen, about those bitter songs you sing?
They're not helping anything;
They won't make you strong.

A wise cat, but even so, a bitter song can sometimes resonate a bit. And an (uncharacteristically) somber song called "(Hospital Vespers)" gets me thinking of the early days of Fergus' diagnosis, of the fear and helplessness of watching your little boy lie there in the hospital bed while you wait for the orderly to take him down for a bone marrow tap, or an infusion of toxic chemicals into his spine.

Doctors played your dosage like a card-trick.
Scrabbled down the hallways yelling "Yahtzee!"
I brought books on Hopper and the Arctic,
Something called "The Politics of Lonely,"
A toothbrush and a quick-pick with the plus.
You tried not to roll your sunken eyes, and
Said, "Hey can you help me, I can't reach it."
Pointed at the camera in the ceiling.
I climbed up, blocked it so they couldn't see.
Turned to find you out of bed, and kneeling.
Before the nurses came, took you away,
I stood there on a chair and watched you pray

Personal convictions aside, I'm not, as they say, a Prayin' Man. But strange situations can take you in strange directions. I've been thinking a lot lately about how parenthood, and uprooting, and homeschooling, and my child's leukemia have changed my life, and it seems busier and more fractured than ever. In fact, just this morning, Lauren said she felt like we have a dozen things all hanging by the barest of threads right now. She and I seem to talk most thoroughly by email, and the only time I have for inwardness are the times stolen away from my family—an hour at the gym, or an afternoon (so rare) climbing a mountain.

Last week Lauren sent me an article about a husband and wife who both initiated affairs while their young daughter struggled with a mysterious set of symptoms. Lauren wasn't trying to "tell me something" ominous with that article, but it resonated for us both nonetheless:

I think the hardest part of having a child with special issues is the need for comfort. Julie and I could do anything, face any tough issue that came up, if only we could escape that world every now and then. Perhaps we all need to have someone on the outside to make that escape with, someone who's not there with us.

To complicate our feeling of helplessness, we had no definitive answer to face, no medical diagnosis stating "This is what's wrong with your child, and here's what you need to accomplish in order to fix it." There were only unanswered questions and frustrations, and when we looked at each other, I guess what we saw was someone who didn't feel one bit of sympathy for the other. I'm in the same boat, we seemed to say. Don't look to me for any answers.

This feeling of giving nearly all that you have to give in order to keep your kid alive, to vouchsafe his journey back to health--this is the part that resonates. But if we can't turn to the closest of others for answers, for support and nourishment, what is the safe direction to turn? Outward or inward? And if it's inward, how do we carve out the quiet moment to delve into that inwardness?

These thoughts were with me this week when I encountered a radio interview between host Krista Tippett and Irish poet John O'Donohue on a show called "Speaking of Faith." And again, I find myself making connections—possibly spurious ones, I know—between what he says here and the pop songs and the articles, the themes that keep washing into my waking life. An excerpt:

John O'Donohue: You see, I think that one of the huge difficulties in modern life is the way time has become the enemy.

Krista Tippett: Time is a bully; we are captive to it.

JO: Totally. Seven out of every ten people who turn up in a doctor's surgery are suffering from something stress related. Now, there are big psychological tomes written on stress. But for me, philosophically, stress is a perverted relationship to time. So that rather than being a subject of your own time, you have become its target, and victim. And time has become routine. So that at the end of the day you probably haven't had a true moment for yourself, you know, to relax in, and just be. Because you know the way in this country there are all the different zones—I think there are these zones within us as well. There's surface time, which is really rapid-fire Ferrari time--

KT: --And over structured.

JO: Yeah, over structured-like, and stolen from you, thieved all the time. And then if you slip down…like Dan Siegel, my friend, has this lovely meditation, you know, you imagine the surface of the ocean is all restless, and then you slip down, deep below the surface, where it's still, and where things move slow. And what I love in this regard is my old friend, Meister Eckhart, the 14^th century mystic--

KT: --Right. German mystic.

JO: German mystic. And one day I read in him, and he said, "There is a place in the soul—there's a place in the soul that neither time nor space, nor no created thing can touch." And I really thought that was amazing. And if you cash it out, what it means is, that your identity is not equivalent to your biography, and that there is a place in you where you have never been wounded, where there is still a sureness in you, where there is a seamlessness in you, and where there is a confidence and tranquility in you. And I think the intention of prayer, and spirituality, and love is now and again to visit that kind of inner sanctuary.

Where do these connections lead me? To prayer? I don't know. Maybe to difficulty--and the still, sure place on the other side of difficulty(?) Biography is not identity, but maybe it's the tool we use to make the journey from here to there.

--If that is not utter nonsense to say.

...Oh, you're very sweet;
Thank you for the flowers and the book by Derrida,
But I must be getting back to dear Antarctica.
Say, do you have a ship and a dozen able men that maybe you could lend me?
Oh Antarctica.

Audio of the John O'Donohue interview (MP3, 53 minutes). Mr. O'Donohue died in January of this year.

Training Climb One

Okay, I wouldn't exactly call it a "climb". Vermont's distinctive Camel's Hump is more of a hike. But we DID use ice axes on the way up and even, for a short stretch, crampons. Mostly we slogged along in snowshoes. But JohnTheClimbingMentor and I appeared to have the mountain to ourselves. It was a beautiful day, with hazy views from New York to New Hampshire. And a great opportunity to learn a few things about mountaineering stuff. Thanks John. And thanks heaps to Sarah for hanging out with Fergus and Norah so I could have this opportunity. When you add it all up, our debt to Sarah and Todd is enormous. Thanks.

Another Father's Lament

Thanks to Angus for noting this piece on his weblog.

What follows are not my words--and I don't agree with some of the implications here--but Darren Gowen lost his daughter to leukemia in 1999, and his pain is clear.

So. An admonition: pain into action.

"Lessons Learned"
By Darren Gowen
Published September 8, 1999 in the Free Lance Star, Fredericksburg, Virginia

IF I SEE, HEAR, OR READ one more thing about breast cancer, I'm just gonna throw up," she said as we stood at the microwave in the visitors' lounge watching chicken reheat. It was late in the evening and quiet on the hospital's pediatric inpatient floor.

We were sharing a respite from our children's cancer treatments. Her son had osteosarcoma, a bone cancer. Evidence of his four-year battle included a missing leg and a shiny bald head, the result of surgery and chemotherapy to counter the cancer's every move.

My daughter had leukemia, a condition that had relapsed following a bone-marrow transplant. Bald too, she had difficulty walking, and had recently been informed that her treatment had failed and that she would not live to see the millennium.

If given a choice, parents would gladly choose for themselves to have cancer over their children. But cancer never gives them such a choice.

I've been thinking about the woman's words. The television and print-media blitz on breast and prostate cancer is a mixed blessing. The focus on detecting such cancers provides a needed community service to the extent it motivates individuals to contribute time and money to cancer organizations. Also, breast and prostate cancer are relatively common among adults. Over the last decade, for instance, the incidence of breast cancer ranged between 76 and 123 per 100,000 women. The mortality rate was 27 per 100,000.

But cancer is entangled in politics and corporate greed. Government agency budgeteers take advantage of politicians' pandering by spiking their proposals with much-needed requests for cancer research funds. Meanwhile, to boost profits, drug companies invest heavily in advertising and lobbying to influence the political funding process.

Like the mother of the boy with osteosarcoma, I do not appreciate this frenzy over adult cancers. I acknowledge bias, having recently lost a child to leukemia. Yet I wonder: To what extent does the emphasis on breast and prostate cancer hamper the detection and treatment of other cancers? Do the extra dollars going toward breast- and prostate-cancer research pull away dollars that might otherwise fund studies of other cancers?

The National Cancer Institute's proposed budget for the coming fiscal year indicates a clear emphasis on breast and prostate cancer. At the institute's Web site, I ran a word count on "breast" and "prostate" and got a large total. However, "child," "pediatric," "leukemia," or any other term connected to childhood cancer only sporadically showed up in the mammoth site.

The incidence of childhood cancer is 14.1 per 100,000. Although the mortality rate for children with cancer has decreased by 42 percent in the last two decades, cancer's incidence has increased 10 percent. For black children, the increase is 14 percent.

Particular childhood cancer rates have seen higher increases: soft tissue sarcoma and brain cancer, 25 percent; acute lymphoblastic leukemia, 20 percent. Though it appears that the incidence and mortality rates for childhood cancer are small next to cancers among adults, if analyzed in terms of lost years of life, childhood cancer is much more devastating to society.

The average age of mortality for adults with cancer is 50, which represents a loss of more than 20 years of life per adult. In contrast, a child who dies from cancer loses 60 to 65 years of life.

This incalculable loss, however, is not immutable if we understand that research on childhood cancer is often successfully applied to adult cancer. Cancer scientist John Lazslo calls childhood leukemia a "stalking horse for other cancers." When childhood leukemia is cured, he says, cures for the rest will soon follow.

The first cancer clinical trials involved children with leukemia. Children with cancer are usually otherwise healthy and can tolerate greater drug intensity than adults. Each child that has participated in a clinical trial to test a new treatment but succumbed to cancer has bestowed a precious gift--improved treatments--on those, including adults, later diagnosed with cancer.

Much of the early development of bone-marrow transplantation targeted children with immune-deficiency diseases and other causes of bone-marrow failure. Since then, both adults and children with leukemia and other cancers have received bone-marrow transplants.

Some important discoveries about the molecular biology of cancer have originated in pediatric studies. The study of the rare pediatric eye cancer retinoblastoma led to the landmark discovery of the first human cancer gene. The absence of this particular tumor-suppressor gene leads to several adult cancers--including prostate cancer.

The first applications of gene therapy in children with brain cancer and neuroblastoma, a cancer of the central nervous system, are under way at a children's hospital, and eventually will have adult applications.

Our daughter participated in the first comprehensive trial of an immunotoxin. The side effects from the experimental therapy were devastating, and the eventual result was not positive. But we know of several children who are alive today because of it. Treatments using immunotoxins will soon help adults with cancer and AIDS.

Children with cancer have given a tremendous gift to adults with cancer. Are we adults so generous?"

Source: http://home.att.net/~gowfam/lessons.htm

Vermont Town Meeting Day Propaganda

Since it's town meeting day here in Vermont, here is a gentle political digression:



The kids made this stuff at a recent "Kids for Obama" event at Barre's L.A.C.E. There was a microphone for kids to chime in with their political thoughts, ad-lib song performances, or whatever. Fergus gave a speech that he wrote in the car on the way over:



The crowd (of 8 or 10 other kids and their parents) went wild.

Apparently, Obama wants this for America:

Long Run Sunday (AKA "Long Run Sunday Pain Report")

Well, I ran 10k on the treadmill yesterday, and my aching back isn't any more aching--and my tendency lately toward waves of queasiness has not gotten any more wavy. So I'm going to try a long run, on a route I'm calling the Snow Hill Nine-Miler (since the hardest part is an extended hill on Snow Hill Road).

The roads are covered with snow, it's 16 degrees (F) with happy little flurries coming down. It won't be fast. But it might be fun. Or it might be kind of endless. We'll see.

---

So the run is done, and here's the report:

• Even though the roads were not "icy", they were mostly covered with loose snow, which meant a little bit of slip underfoot with each push-off--kind of like running nine miles on loose sand. I didn't exactly break any speed records.
• I had to walk several times, especially on the hills, which seemed particularly daunting today. Still recovering from that virus, I suppose.
• I very quickly felt tightness in my right knee, which became more and more distracting along the route. This is most likely an ITB issue that I need to stay on top of--probably with the help of a physical therapist.
• Dismayingly, after about 7 miles my left calf started cramping up intermittently, in that sudden way that makes you stumble and almost fall. This is the sort of thing that started up around mile-20 on the only marathon I've done. I'm going to blame this on The Virus, too, but I also wonder if I should be taking some supplements or something to maintain my, um, electrolytes.
• The good news is, I did the nine miles, and I'm I'm not (yet?) hobbling around like a broken man.
  

The Viewer's Platform

I just learned that Lauren and the kids (who have been on the fence about coming to Seattle during the climb) might have a chance to house-sit here:



It's a recent remodel in the Wallingford neighborhood. The views from upstairs include this...



...And This.....



...which will be a great way for Lauren and the kids to keep tabs on me (this is basically a view of our climbing route, albeit from 65 miles away), but DANG, it's going to be hard to leave this house to hunker down on the side of a glacier. Maybe I should just stay in Seattle and LOOK at the mountain?