You're not the Only One

Hey, it looks like I have a short piece in a (quasi-homemade) compilation of blog writing, "You're Not The Only One."

See the description I wrote back in February.

My thing was a relapse-fear thing. So you know, buy one. Because everyone loves that sort of thing.



Proceeds support War Child.

Thanks to Angus for the tip.

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.

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."