Childhood Cancer Act Passes Through US House of Representatives

This just came in from the folks at CureSearch:

Dear Friends:

A great day in the fight to conquer childhood cancer, our legislation just passed the U.S. House! The final vote tally was 416-0.

Please post and disseminate as far and wide as you can. We at CureSearch are grateful to our wonderful grassroots community for spreading this wonderful news!

The more awareness we do now, the easier we will make it for passage in the Senate.

Here is the CureSearch press release:

CureSearch Praises Passage of the
“Caroline Pryce Walker Conquer Childhood Cancer Act”
in U.S. House of Representatives

Children with Cancer and their Families to Benefit from Landmark Legislation

June 12, 2008 (Bethesda, MD) – CureSearch National Childhood Cancer Foundation salutes the United States House of Representatives for passage of H.R. 1553, the “Caroline Pryce Walker Conquer Childhood Cancer Act,” which promises to significantly increase federal investment into childhood cancer research.

During markup of the legislation, the bill was renamed the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008, in memory of Caroline Pryce Walker, daughter of Congresswoman Deborah Pryce (R-OH), who succumbed to neuroblastoma in 1999 at age nine.

The bill authorizes $30 million annually over five years, providing funding for collaborative pediatric cancer clinical trials research, to create a population-based national childhood cancer database, and to further improve public awareness and communication regarding available treatments and research for children with cancer and their families.

“For far too long, children suffering from pediatric cancer have gotten short shrift on federal resources,” said Pryce, original author of this groundbreaking legislation.

“The bill we passed today dramatically expands federal investment into childhood cancer research and education, and will make an historic difference in the lives of the more than 12,000 children who will be diagnosed with cancer each year. A nation with our resources, our scientists, our committed doctors and oncologists, and our inherent and insuppressible fighting spirit can and should do more to put an end to so much suffering.”

Congressman Chris Van Hollen (D-MD), one of the original co-sponsors of the Carolyn Walker Pryce Conquer Childhood Cancer Act, stated that conquering childhood cancer has transcended partisan politics, and addresses a critical national issue that is finally receiving the attention it deserves.

“I am pleased that the House passed this important legislation, which will bring us one step closer to eradicating pediatric cancer,” said Van Hollen. “This bill will enhance and expand pediatric cancer research activities at the National Institutes of Health, establish a pediatric cancer registry, and increase informational and educational outreach efforts to patients and families affected by pediatric cancer. No child should have to experience and suffer the effects of cancer, and no parent should have to see their child suffer.”

CureSearch supports the life-saving research of the Children’s Oncology Group, the world’s premier cancer research collaborative. Treating 90% of children with cancer, the Children’s Oncology Group includes more than 5,000 experts in childhood cancer research and treatment, located at more than 200 leading children’s and university hospitals across North America.

"The Caroline Pryce Walker Conquer Childhood Cancer Act allows for translation of the very best research discoveries into clinical evaluation and practice, in order to improve the cure rates for all children with cancer,” noted Gregory Reaman, MD, Chair of the Children’s Oncology Group. “Only research cures childhood cancer. On behalf of my colleagues in the Children’s Oncology Group and the children with cancer and their families who are our partners in clinical research, we thank our Congressional leaders.”

“On behalf of CureSearch, we applaud the steadfast leadership of Representatives Chris Van Hollen and Deborah Pryce and their colleagues in the House who through the passage of this bill have made finding the cure for childhood cancer an urgent national priority,” said Stacy Pagos Haller, Executive Director, CureSearch.

Companion legislation in the United States Senate (S.911), sponsored by Senator Jack Reed (D-RI), cleared the Senate Health, Education, Labor and Pensions (HELP) Committee unanimously in November, 2007. The Senate version of the Conquer Childhood Cancer Act currently has 63 co-sponsors; a full Senate floor vote on the bill is expected this summer.
# # #

About CureSearch

CureSearch seeks to conquer childhood cancer, conquer it sooner, conquer it fully and for all time. Through public education, advocacy and fundraising, the National Childhood Cancer Foundation, a non-profit 501 (c) (3), supports the work of the Children’s Oncology Group (COG), the world’s premier pediatric cancer research collaborative. This network of more than 5,000 healthcare professionals dedicates their lives to finding answers and sharing results. More than 12,000 children are diagnosed with cancer each year, and more than 40,000 children and adolescents are currently in treatment. Only research cures cancer. For more information, visit www.CureSearch.org.

I take it back: It's NOT Simply There

I've been mulling over the excerpt I posted the other day from the Boston Globe, in which Judy Foreman wrote:

"Fight, Ted, fight!"

This mantra, chanted over and over to give moral support to Senator Edward M. Kennedy as he faces brain cancer, drives me nuts. The caring behind it is wonderful; the metaphor is not.

Cancer is not a football game. It's more of an involuntary dance with a partner you didn't choose, more judo than battlefield warfare....

It calls to mind Susan Sontag's book-length essay, "Illness as Metaphor," in which she argued that cancer--like tuberculosis in the 19th century--too often serves as a metaphor to explain outward ills of the world and inward failings of the person. To quote from our dear anonymous friends at Wikipedia:

Sontag shows how both diseases have become associated with personal psychological traits. In particular she demonstrates how the metaphors and terms used to describe both syndromes lead to an association between repressed passion and the physical disease itself. She notes the peculiar reversal that "With the modern diseases (once TB, now cancer), the romantic idea that the disease expresses the character is invariably extended to assert that the character causes the disease – because it has not expressed itself. Passion moves inward, striking and blighting the deepest cellular recesses."

The Judy Foreman piece had resonance, probably, because to chant "Fight! Fight! Fight!" at Ted Kennedy and his newfound brain cancer seems so over-simplistic, naive, and ultimately self-serving. And, you know, you get a certain amount of this from the world at large when you become "a cancer family": the naivete, the sentiment that serves the teller more than the receiver, the ill-conceived advice, even the simple blameless not-knowing-what-to-say of it all. I say all this knowing that I could say harsher things, and yet even these may have overstepped, broken the contract that insists on careful civility--on both sides, really; the cancered and the cancer-free. But I digress.

Resonance.

On the other hand, how can something like cancer--so difficult to get your head around when it happens to someone you love, so mysterious in its causes and outcomes--how can it not take on aspects of metaphor? I mean, look at this Mount Rainier climb: the whole thing is a metaphor. Indeed, even as Judy Foreman argues that cancer is not a metaphor, that "it's simply there," she uses metaphor to try to explain cancer's true nature: it's not warfare, it's judo, it's an involuntary dance with a partner you didn't choose.

Metaphor, like some poetry, reveals its truth by misdirection or sleight of hand, and sometimes it reveals a deeper truth in doing so. And as we dance around the elusive truths of cancer we're trying to uncover (or simply describe) something about it that can't be uncovered directly. But yelling "fight! Fight! Fight!"???? More than anything, this metaphor fails because it doesn't do justice to the complexity of cancer. We're all trying understand the nature of cancer, and to know how to respond to it. But it's clearly not a football game, and chanting at it is simply inane.

So is "climbing it," for that matter. And calling this blog "Cureclimb" is, in itself, kind of inane. We are not going to cure cancer by climbing Mount Rainier. But as a personal act (by the father of a leukemia kid), this climb "works" for me, metaphorically speaking. And I am grateful to everyone who has chimed in with words of support, donations, advice, whatever. One climb will not cure cancer. But hopefully we'll get there, eventually, and cancer can stop carrying all this metaphorical baggage around. A disease, or a set of diseases; preventable, treatable, survivable. THEN it will simply be there.

New Normal Old Normal

It was so hard at first to get Fergus' oral chemotherapy into him. Nausea plus nasty-tasting drugs do not make for a happy mix. Dexamethasone syrup made him vomit, and mostly he hated all the other syrups too. But we found an old mortar and pestle in the back of a kitchen cabinet and, with trial and error, we figured out just what drug had to be ground up and mixed with what flavor yogurt (or whatever) in order to get the stuff into him. Finally, somehow, he learned how to swallow pills--sometimes as many as 9 at a time. And as often as 3 times a day we would come to him with a handful (or a dixiecupful) of pills and a glass of water. He'd pop them into his mouth with just a glance and swallow them down.

Another day, another x milligrams of toxic chemicals.

I swear, even today I could walk up to him with a glass of water and get him to swallow anything remotely pill-shaped. Small pebbles. LEGOs. Cat food nuggets. Diamonds.

Not that I've tried any of these tricks. Or own any diamonds.

But there are times when the sheer routine of such moments--putting chemotherapy into your child, holding him still while someone sticks a needle into his chest, recording in a notebook every medication given, every bowel movement done, every variation in body temperature--can be shocking.

As Isabel's mom wrote this week:

Tonight was just the same as ever, nothing out of the ordinary. But, that’s what got me. Our “ordinary”. I stood there, washing the syringe and realized that my daughter hasn’t complained about taking the medications each and every night in over a year. She simply takes it and takes it and takes it. It’s not normal. It’s not okay. It’s not fine. It’s scary and upsetting....

So very true. After treatment ends, a different, better kind of normal starts to take over. But, I think, never completely.

Our Story: Take Two (Lauren's 9/2007 Radio Interview)

My wife Lauren is far more articulate than I am. End of story. This is as good a time as ever to let her have her say.

Please have a listen to this 9/19/2007 interview she gave to Vermont Public Radio's Mitch Wertleib (MP3 version), starting with the question, "How did you feel when you first learned that your son had leukemia?"

On a related note, if you're in the U.S., please urge your elected representatives to support the Conquer Childhood Cancer Act of 2008. You can write them a letter about it here. The act, which provides specific funding for childhood cancer research, is currently under consideration by both the House and the Senate.

Late Night Leg Pain Blues: A Short Annotated History

When it first crops up, leukemia can present itself in all sorts of ways. Physical tiredness or lethargy. Bruising. Cuts that don't heal. Fevers. Deep bone and joint pain.

A month or more before Fergus was diagnosed (the timeline is murky) he claimed one day that his legs no longer worked. He was 4 years old. I remember him crawling from the car to the front door that afternoon, and sliding around the hardwood floors of our house that evening before bed. Somehow (and I wince when I admit this) I chalked it up to something like melodrama, or the side-effects of a very active imagination. The next day he seemed fine.

And yet a few weeks later it happened again, this time when Lauren took him and Norah to a science museum for the afternoon, and he spent the day wheeled around in a stroller.

By then, or soon after then, there were other warning signs too--illness, appendicitis-like stomach pain, unexplained anemia. It's a long story.

The day he was diagnosed, though, he was essentially free of symptoms. No fever. No aches or pains. That afternoon, our world turned upside down by the 20-ton thud of that word--leukemia--dropping into our lives, we lobbied successfully to take Fergus home for the night, to regroup before checking our little boy into the hospital for treatment.

That night, the bone pain returned for Fergus, deep and awful. We were awake all night, with Fergus begging us again and again to make the pain go away. We could not.

Fergus is 8 years old now. He has been off-treatment for almost 11 months. Lauren noticed him limping a little this morning, and asked him about it. He said something about stubbing his toe last night when the babysitter was here, or of twisting his foot somehow. He wasn't very specific. Lauren and I looked at each other briefly, then moved on. Then late this afternoon he said something about his other leg hurting too, but he couldn't really point to the exact source of the pain. Again, he wasn't very forthcoming when we asked about it. Lauren looked at his foot, but couldn't isolate any painful spots.

Fergus left the room to go about his business (getting ready for bed or whatever), and Lauren and I stood there in the kitchen looking into each others eyes. A small smile (wry? wan?) passed between us. We are so fucking powerless before this disease. Are these just the normal pains of an 8 year old boy re-learning how to run and jump and dance? Or is this the relapse, the cancer coming back? We have no way of knowing for sure.

I mean, what can you do? You shrug, sort of. Or smile that war-zone smile. And stand in the kitchen and hug.

This is supposed to be the easy part, you know? Shit, this is the easy part. And yet, the smallest of things (like--oh god--the smell of the hospital cafeteria yesterday, as Lauren and I walked by on the way to an appointment of hers), the smallest of things can trigger these emotions, put us on high alert, remind us again that we are still on the leukemia-family side of the fence.

Look, Fergus is probably fine. As far as we know (knock wood, cross your fingers, praise the deity of your choice) he could be done with cancer, and cancer done with him. There are so many other kids who are struggling with relapse, or complications, or worse. Honestly, we've had it pretty easy. We are the lucky ones. And yet, this is still Life During Wartime, and we can't just relax into our lives.

Elsewhere, kids have died this week of cancer. Lots of kids--someone else could give you a number; not me. Other little boys or girls have just been diagnosed, and their families are reeling, their parents near passing out (as I was) at their child's bedside. And children all over the world lie in hospital beds, or visit their local clinics, and toxic agents are passed into their stomachs, their veins, their spinal fluid. It's a crude approach in a lot of ways, but it's the only thing that they know to do. It needs study, refinement, more study, breakthroughs large and small.

Obviously, there are a lot of problems in the world. But please consider throwing your ten bucks at this one.

I'm just saying.

Two Trials

We're wishing Maine's Emily LeVan the best of luck at Sunday's Olympic marathon trials in Boston.



More importantly, congratulations are in order for her daughter Maddie--who is in treatment for leukemia--for finishing "Delayed Intensification". Even though she has a good distance to go, "D.I." is kind of like Heartbreak Hill; all that's left is the long, arduous "coast" to the finish.

(Two Trials)

Dex-Pulse Anniversaries (Long Post)

Last night I was looking at some photos from a year ago, curious to see how much snow we had last April compared to this year. And I realized that yesterday was the one-year anniversary of Fergus' last dose (ever?) of the steroid dexamethasone. Twelve weeks later, he was officially "Off Treatment". There were few things Lauren and I hated worse than the steroid "pulses" that were part of his treatment protocol. I mean, certainly some of the other chemicals we put into Fergus were more scary, and may have had more lasting effects. But the steroids were odious, and brought chaos and emotional upheaval into our lives. Here is his last dose of dexamethasone, April 5, 2007:


I never really captured the full awfulness of those dex pulses, which lasted as long as three weeks, during which time we were kept very busy managing his intense food cravings, and borderline craziness (some kids literally exhibit psychotic symptoms during long steroid pulses). In his last year of treatment Fergus had a one-week pulse of dexamethasone every 12 weeks. I tried to document one of these weeks, back in April of 2006, and I've included extended excerpts here. But we were "saved" from some of the more intense steroid effects that week, since Gus had some other things going on (intense, post-spinal headaches). But these notes still capture something of what life can be like with leukemia in the house--even at 18 months into treatment, when things had become relatively routine.

Dex Week: Introduction (4/2006)

In the current stage of Fergus' treatment ("Intensive Continuation", research protocol "POG 9905"), every twelve weeks he gets IV vincristine (a chemo drug), goes under anesthesia, gets methotrexate injected into his spinal column, spinal fluids are drawn to look for abnormal cells, and he starts a week of the steroid dexamethasone. You'd think the worst part for us would be the anesthesia, or the spinal tap. But it's the dex that we dread.

The affects of dex are a little different each time, but for Gus they can include:

1. Red cheeks.
2. "Moon face".
3. Distended belly.
4. Emotional volatility.
5. Higher pitch to his voice.
6. Insatiable appetite, and very specific cravings.
7. Night time teeth grinding (intense enough that we can hear it in the next room).
8. Thinking that is rather obsessive, a little strange.
9. Hair that feels dirty all the time, even right after a bath.
10. Afternoon exaustion.
11. Night time waking.
12. Early rising.
13. With extended dex treatment he can develop an unpleasant, "chemical" smell.
14. His drawings become more herky-jerky, and filled with elaborate (but hard to discern) detail.

Symptoms start slowly, subtly at first, but can become pretty severe by the end of the week (we used to have longer periods of dex, which were awful). We've also realized over the last few dex rounds that there is a period of several days after the dex ends that are also very hard for Gus, when he is moody, tired, and sad.

This week Fergus had his spinal on Wednesday afternoon, and we started the dex that evening with dinner. He gets 3 mg, twice a day.

Here is what 3 weeks of dex can do to our boy (March 2005):

(cringe)

Dex Week: Day 1 (4/2006)

The emotional affects of the dex seem to be hitting quickly this time. Lauren says he was all over the map today: manic, weepy, furious. While driving to Burlington today, some minor slight led to Fergus hitting Norah in the face, twice, hard, while she was trapped in her car seat. Also, when he was mad at Lauren for something, he hit a storm window with a long pole, breaking it (I'm not sure he realized it would break).

This week could be a doozy.

Dex Week: Day 2 (4/2006)

His cheeks have gotten red, in the dexamethasone way, and a little puffy. His moods were a little volatile today, but they mostly corresponded to a headache that came and went during the day, even after some Tylenol (Ped-Onc said it was okay to give). He also reported a stomach ache for awhile (which he blamed me for, since I was pushing fluids to ease his headache).

Is the headache a chemo side effect or is it a side effect of the spinal? I don't think he's ever had a post-spinal headache before.

Dex Week: Day 3 (4/2006)

As the kids watch a video this morning, I hear keening coming from the den: Fergus' headache is back. A half hour passes and it seems to be gone again. In another half hour, it's back again, and he's lying sideways on the couch, close to tears.

While we had assumed that any post-spinal (or "Lumbar Puncture") headache would occur more or less right after the procedure, I found some info at Columbia University that indicates it can take a few days before onset:

"The onset of PLPH (Post Lumbar Puncture Headache) is usually within 24 to 48 hours after dural puncture but may be delayed as long as 12 days. Symptoms are usually self-limited. With conservative management 50 percent of headaches resolve spontaneously within four days, 75 percent within seven days, and 95 percent within six weeks. The longest reported PLPH lasted 19 months. Early onset of headache after LP correlates with a worse prognosis."

As I write this, Gus is working on LEGOs, but in pain again, saying "Who can help me?" I'll get him some Tylenol, but it didn't help much yesterday...how do I explain that he's mostly just going to have to wait it out?

He keens again and says, "I can't calm down, Daddy. All the pain that is building up inside is making me make those sounds." It's hard to know how much his reaction is amplified by the dex.

I push him to drink more water and right away he says, "It's not helping, Daddy!" And yet, ten minutes later, he's lying on the couch, giggling at a muppet video. Lying down like this may feel better to him, as bed rest is one of the recommended steps for ameliorating symptoms, the horizontal position reducing the "persistent leakage of cerebrospinal fluid (CSF) from the puncture site."

Urgh.

Dex Week: Day 3 (Addendum) (4/2006)

Glimmers of food cravings to come? Yesterday he had two apples at lunch time, which is unusual for him, and tonight had seconds of applesauce with dinner, in addition to a small cup of yogurt with dexamethasone and Zantac ground up in it, which he called his second dessert. Usually the cravings run more to spagetti and meatballs.

But more telling for me was that he finished a large dinner (and the above desserts), sat back and moaned (not with delight but something more like anguish) that he couldn't eat any more... then, not five minutes later, when Norah began eating a small half-cup of icecream for dessert, he declared that he was "starving" and had to have what Norah was having.

We had to re-configure our bedtime medication ritual--nightly Mercaptopurine, or "6MP", on an empty stomach--and negotiate with him so he could have a small cup of icecream.

He was asleep an hour later, before Norah even made it into bed. He nearly fell asleep as I read to him ""The Book About Moomin, Mymble, and Little My."

We'll have to wake him for the 6MP (and hope that his dex-brain doesn't spring to life when we do).

Dex Week: Day 4 (4/2006)

A tiring day that saw Fergus' headaches becoming less frequent (I actually spelled that word "freakwent" the first time, which probably means something), Norah complaining a lot about her own phantom illnesses and then getting the last laugh by throwing up at the grocery store deli counter.

And here I thought she just wanted attention.

It also saw Fergus alternating between sweetness and senseless fury, and on two different occassions screaming over and over, "I wish I'd never been born!" Well, buddy, we're glad you were, so enough already.

No food cravings to speak of. Still a fair amount of high-pitched keening when his head hurt.

Three days of Dex to go.

Dex Week: Day 5 (4/2006)

I'm at work today. Here are a couple of status reports from Lauren:

Morning, via online chat:

9:10 AM me: How's everyone?
9:11 AM Lauren: ok; no headaches yet; some volatilty..."Nobody loves me; I wish I'd never been born"...both were up at 6:15, so will be tired later. He's mad at me for not being able to show him the video you made last night.

Afternoon, via phone:

At 3PM Lauren called me from the car with an update. Both kids were mad at her because a thrift store she promised to take them to happens to be closed on Mondays. As she told me about this, in the background, Fergus announced:

I have five rules for you, Lauren:

1. I have no toys.
2. I’m never going back to that store.
3. We will lose our house.
4. The roads will be destroyed.
5. All the houses will be blown up.

My six-year-old nihilist.

Dex Week: Day 6 (4/2006)

I was home with the kids today (a usual thing on Tuesdays), and things went relatively smoothly. Fergus was somewhat emotional, but also quite sweet at times.

No headaches (and Lauren says he had none yesterday either). He spent a good amount of time working on drawings, with recurrent themes based on LEGO robots or a bad guy from a Muppet movie called Doc Hopper (I think he has a chain of restaurants specializing in fried frog legs, much to Kermit's chagrin).

The dex may be wearing him out a bit...this afternoon while the three of us played outside, he eventually said he was tired, and went inside to watch a video. Maybe the exaustion of the dex is muting the volatility. While there were glimmers of the dex kid who can't get enough of a certain food, I still wouldn't say he was dex-obsessing about particular foods, and it is still possible to dissuade him from endless "refills" of fries, or whatever, especially once the food in question is gone (whereas when he's full-blow dex-boy you can tell him that there is no more spagetti and meatballs and it won't matter...it will come up again and again until you relent and make another batch of noodles and sauce).

He created a delightful 10 or 12 page booklet today called "The Book of Scary Stuff," with pictures and text. Sample scary stuff includes: "Walking bushes are the most frightening thing in the world," "a giant turkey that is mad with a dinosaur tail," "killer crocs they live in swamps they kill," and (speaking of Doc Hopper) "Doc Hooper (sic) rips off the legs of frogs to make french fried frog legs." Ooooh, gives me the willies just to think about it.

Yesterday, which was perhaps an angrier day, Gus wrote this letter (to his twin friends) on a computer at Lauren's clinic:

"To luke this is an
Emergency note for you
& libby a laser
cannon just fired
lasers at the space
station do something
quickly before they
burn down the town.

Signed fergus"

Tomorrow: the last day of Dex.

Oh, and we made it to the thrift store today, despite yesterday's dire warnings from Fergus. He was delighted to come home with three dollars worth of plastic breakfast food. Norah came home with some groovy purple pants.

Dex Week: Day 7 (4/2006)

Gus was up early (5:30AM), which is fairly typical of Dex: fitful sleep, buzzing brain, late afternoon exaustion. When I left for work at 6:15, he was sitting with Ocho (one of the cats), watching a video. No big deal. His last dose of dex was just 2 hours away.

After work, at about 7:15PM, I met Gus and his Mom and sister at a local pizza place, where they had met up with our friend Sarah and her daughter (who is Gus' age).

He was a different kid.

He even looked different: his face was suddenly round, his cheeks bright red. This is the face that all kids on steroids eventually get, such that there can be more of a family resemblance between dex kids than there is between the kids and their parents. It's unnerving.

When I got to the table, he was sprawled on the bench. "Hello down there, Daddy," he said. Minutes later, as I ate the one leftover piece of pizza, his obvious exaustion was replaced by (or overridden by) manic energy. Luckily the restaurant was nearly empty, because soon he was prancing around between the tables, calling out, "Let the show begin!" or, "Now ladies and gentlemen, it's time for the Two Girls Rock and Roll Show!" or "It's time for the 'Brother and Sister Smack Show!" Thankfully, this last show was not about hitting each other, but about slapping your own thighs to make drum sounds and then dancing along to the beat (Sarah was the only one willing to do this with Gus in the middle of the restaurant...Lauren probably would have done it, but she was away from the table at the time).

But in spite of his excited emcee performance, Gus was also very quick to get upset if we didn't all do as he directed us to do, or if Sarah took a picture with him in it (she was trying to get a good picture for a newspaper story about Lauren's triathlon training).

Lauren said that before I got to the restaurant, there was a moment when Sarah's daughter wanted to use a certain green crayon to draw with, and Gus could not stand it, and wailed, and then yelled at the top of his lungs (in the restaurant, mind you) the familiar refrain from this week, "I wish I was never born!"

We got out of there fairly quickly, before things got too ugly. Outside, along the railroad tracks, he directed us in elaborate, manically-contrived stories that we had to act out, and if we strayed from whatever script he had in his head he screamed. E.g. he announced we should all sing railroad songs, and when Sarah's daughter obliged, he kept yelling, "Stop! Stop! Stop!" and it later turned out that he wanted us to sing "I've been working on the railroad" and nothing else. Then there were awful tears when we started talking about going home, and when Sarah and Co. actually did go home, he was furious, and stormed off down the railroad tracks.

I mean--wow.

So let's all cheer for this picture: no more dex:

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."

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.

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

"Late Effects"

From a recent article in Newsweek:

Childhood cancer is not the killer it once was. Seventy-five percent of kids diagnosed with it go on to have long lives. But survival comes at a cost: two thirds of patients suffer from lingering effects, sometimes from the disease but more often from the medicines that cured it. "Childhood therapy is often stronger than adult therapy," says Dr. Robert Hayashi, a pediatrician at St. Louis Children's Hospital. "That can wreak damage on a growing body." Radiation and chemotherapy may stunt physical and mental development. Survivors may find themselves unable to concentrate for more than a few minutes, or exhausted by the smallest tasks. Time is also known to work against them. "As these patients get older," says Hayashi, "they start to show symptoms that may have been silent for years."

First you spend three years keeping your kid alive; then you spend the rest of your life worrying about him. Full article here.

"You're Not The Only One"

Now this is interesting.

"Peach" has cooked up a groovy blog-writing / book-publishing / fund-raising hybrid thing that's kind of fun. Check it out.

Has anything happened to you?

Well, yeah, of course it has. So write about it already, and send it to Peach. The deadline is February 29th.

If you're lucky, it will become part of a book, the proceeds of which will go to support War Child, an organization that...

"...works with children affected by war in Afghanistan, Iraq, Democratic Republic of Congo and Uganda. Our work with former child soldiers, children in prison and children living and working on the streets gives them support, protection and opportunities. To make sure we provide them with what they need we involve them directly in all our decision making."

Your submission does not need to relate to any of the themes that spin off of this kind of work. Mine, rather predictably, was a blog post I made (elsewhere) last spring about Fergus' leukemia and the fear of relapse:

Wet Shoes, Dropping Shoes

We had a wet snowfall yesterday, and as I left the gym. picking my way to the car through the slush, I started thinking about the end of treatment, and how Lauren and I will live with the possibility of relapse.

In short (because it was a short walk to the car), it comes down to what may be a minor distinction:

Lauren will spend the time waiting expectantly for the Other Shoe to drop. I think there is some comfort for her, or self- protection anyway, in holding onto a sense of inevitability about bad events, as if they are the flip side to the many good events in her life. I won't say this is some sense of a higher power at work in her life; it could simply be a sense about the sheer chance of bell curves. But it's a powerful, semi-inevitable power at work.

I, on the other hand, will fear relapse pretty much all the time, but if it happens I don't think I will feel any larger forces at work, not even chance. The earth will just fall out from under me--because of the specific, terrifying actuality of relapse. And then we'll move on and do whatever needs to be done.

These comparisons (accurate or inaccurate as they may be) washed through my mind as I got out my keys and unlocked the car. I'm not sure where they came from; I guess they are always there, and they simply bubble up when there aren't a lot of distractions around.

Then it hit me, as it sometimes does, like something half-forgotten: You have a child with cancer. It's an astounding, surreal thing to feel all over again. Your son has leukemia.

Re-absorbing or re-feeling that truth quickly discombobulated everything I had been thinking.

The truth is, I don't know how I'll feel when he goes off treatment, as we sit around waiting for something to (not) happen. Cancer is so big, so hard to get your head around, that it's hard not to think of larger forces at work. Or anyway, of forces that work mysteriously, with little predictability. I don't know if the forces are part of the fabric of the universe or just part of the fabric of my son's bone marrow. But the shoe will dangle. And it will be out of our hands.

Posted by robbo on April 13, 2007 2:05 PM

But this is just what I had lying around. SURELY YOU CAN DO BETTER. So go ahead.

Thank you so much to Angus for pointing this project out.

Correlation, Causation, Chemicals, Congress, Cancer

You might know her as Don Imus' wife.

Pause.

But Deirdre Imus is also deeply involved with the Imus Ranch for Kids With Cancer and, near as I can tell, someone who is convinced that health begins with a relatively chemical-free life. Today she is celebrating International Childhood Cancer Day with an article about chemicals, cancer and political will, over at the Huffington Post.

I'm not totally convinced by her chemical absolutism, but is it rather shocking to read this:

In 1976 Congress passed the Toxic Substance Control Act (TSCA) with the goal of protecting the public and the environment from the harm caused by toxic chemicals. Three decades later, most of the 80,000 chemicals used in commercial products today have never been evaluated for safety by the Environmental Protection Agency (EPA).

And this:

In 1998, the PBS series Frontline aired a story, "Fooling Mother Nature," about toxic chemicals and their affect on humans. Dr. Christopher DeRosa, a director at the Agency for Toxic Substances and Disease Registry (ATSDR) stated the obvious. "If you start to look at all the data together, you start to see a convergence", said Dr. DeRosa. "It is time for public health action...we may not have a smoking gun, but there are bullets all over the floor."

Even more shocking to me (despite the small sample size), is the cord blood study that she refers to, the Executive Summary of which says:

In a study spearheaded by the Environmental Working Group (EWG) in collaboration with Commonweal, researchers at two major laboratories found an average of 200 industrial chemicals and pollutants in umbilical cord blood from 10 babies born in August and September of 2004 in U.S. hospitals. Tests revealed a total of 287 chemicals in the group. The umbilical cord blood of these 10 children, collected by Red Cross after the cord was cut, harbored pesticides, consumer product ingredients, and wastes from burning coal, gasoline, and garbage.

This study represents the first reported cord blood tests for 261 of the targeted chemicals and the first reported detections in cord blood for 209 compounds. Among them are eight perfluorochemicals used as stain and oil repellants in fast food packaging, clothes and textiles — including the Teflon chemical PFOA, recently characterized as a likely human carcinogen by the EPA's Science Advisory Board — dozens of widely used brominated flame retardants and their toxic by-products; and numerous pesticides.

Look, I don't know what caused my son's leukemia. Recent research on twins seems to indicate a two-stage cause: an initial genetic predisposition (perhaps created very early after egg fertilization) and a later environmental "trigger" that sets off the uncontrolled growth of the leukemic cells.

We have wondered about that environmental trigger.

Was it something in the soil where he used to play "Bob the Builder"? Our house at the time was near an old smokestack....what sort of chemicals would a woolen mill spew into the air? And how long would they linger in the soil?

Then there was the T-Shirt-dying warehouse across the street. Foul smells would sometimes emerge from that place, and strange colored smoke that stained their own roof red.

Happily, we've moved from that town.

We've concluded, though, that the most likely cause was the flu that Fergus came down with 10 months before he was diagnosed. I had never seen him so sick. In fact, he looked so bad that (embarrassingly enough) I took his picture.



It was Christmas, 2003. He was three years old. By the following November, he was a boy with leukemia.

But there's no way of knowing if this was the trigger. In fact, I think we had avoided giving Fergus a flu shot that year because, well, three years old just seemed too young to be injected with whatever it is that comes inside those hypodermic needles.

But if we had given a flu shot that year, would we be wondering whether the shot had been the triggering event?

...Or was it some other, more subtle, trigger--like maybe exposure to of one of those 80,000 untested chemicals that Deirdre Imus talks about?

Frankly, we'll never know. For Fergus, it's too late to matter. For other kids, though? It means all the world. And the bullets are all over the floor.

The Mountain is Out

I woke up today to someone shaking my foot, vigorously. And again.

What? What?

It's my wife, and she's whispering forcefully: "Get up."

It's 6AM. One of my days to stay home with the kids.

I stumble out of the bedroom and she's waiting for me in the hallway, an anxious look on her face. I think: what is it? A death in the family? Has one of the leukemia kids relapsed? Is our son okay? Or is it just something online about the presidential race?

In fact it has snowed overnight, the roads are not really plowed yet, and the car is stuck at the bottom of the hill. She could call AAA for a tow, but she thought I might want to give it a try. We live in Vermont, after all--we're not supposed to call AAA. A half hour later I'm home with the car, and Lauren has given up plans to go work out at the gym.

And at this point you're thinking: What does this have to do with climbing Mount Rainier?

Well, there are a lot of reasons I want to make this climb, but one of them has to do with childhood cancer.

And while our 8-year-old son completed his leukemia treatment (2-1/2 years worth) in June of 2007, even still we live with its threat. Its presence has woven itself into our lives. We wake up with it. It hangs over us like--well, like Mt. Rainier hangs over the Seattle area on those clear days when they say:

The mountain is out.

An early awakening, a look on a spouse's face, a boy with a fever, a phone call from our son's clinic--these little moments are filled with awful possibility.

I don't want to overdramatize, but I hope we (all) can get out from under this mountain some day. Until then, it's waiting to be climbed.