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I try not to complain too much. Really, I do. I complain to Mark and to my parents but aside from that, I really don’t complain too much. Especially, you know, considering . . . .
But I am so frustrated and discouraged by the “industry” right now that I need to vent. There seems to have been an “American Idolization” of the book publishing world. Just like in music – there was a time when all that mattered was whether you were good or not. If you had a great voice or a unique talent, that’d be enough. Now you need the looks and the big personality, the online presence and the ability to market yourself – the whole package (or you at least need to be willing to be madeover).
The book world is the same way. You can’t just have written a great book, you need connections, a platform, an online following. You need thousands of people checking your blog each day in order to prove your worth to an agent, in order to sell yourself to a publisher. Nobody is taking risks these days on some unknown, no matter how good their writing. Sarah Palin got a seven figure advance on her book. This for a woman who can’t string ten words together into a grammatically correct sentence? Oh, but she’ll sell books alright.
I love to write. I am happy to write articles in order to get my name “out there” (as long as it’s my actual words that are printed). And I’m happy to blog. I craft many more blog updates in my mind than I ever have time to post. I “write” while I’m running and swimming and laying down to sleep at night. Especially running — I’d surely benefit from some kind of a bluetooth ear-and-mouth-piece I could wear to record my thoughts because as soon as I get home, after having drafted the perfect opening lines for my query letter or a beautiful description of a life and death moment, I’m bombarded with kids needing me or a babysitter needing to be paid and shuttled home or a shower needing to be taken so I can head to some meeting. Those perfectly crafted words and phrases are left behind me in a trail around Cleveland Heights like Hansel’s bread crumbs.
So the writing I love. It’s the other stuff I could do without. Last night, I spent a good two hours reading about how to drive traffic to my blog (pathetic!). Of course, there was some brilliant advice about posting high quality content, keeping your audience interested, being consistent with your updates so people will return (really?). But then there was all this other advice about listing yourself in online blog directories (which I did) and leaving comments on other people’s blogs so their readers will track back to you (which I do) and making business cards with your blog info on them (which I’m embarassed to say I have). But it all seems so obvious, so blatant and a little obnoxious. I just want to write.
Ah, I’m whining. (Gee, wonder where I could have picked that up? There is very little whining in my house. And only about the most important matters, like whether mommy cut the oozing cheese off one’s sandwich or whether one’s pant legs cover just enough of one’s sneakers or whether one has just the right squiggly straw for drinking one’s milk.) But I am frustrated. Every time I rewrite my query letter and send it out, I feel a great swell of hope. This will be the one. This person will actually get to my pages and read them and want more. But it doesn’t seem to happen. Now I must admit I’ve only sent out nine queries in all these months and many writers send out tens or hundreds before landing an agent, but I was waiting until after the writers’ conference to see what new things I learned and then there was that little, oh, recurrence to deal with and then I wanted my DF article to be published so I could mention it (even though I’m now leaving it out).
Alright, enough of this. Time to find that well of strength and determination inside me. Time to RISE! (I’m poking fun at myself, folks.) Tomorrow I will post two versions of my query letter here for you guys to read and comment on. I feel a little nervous about doing this but I guess if they’re not ready to show to you, then they’re surely not ready to be mailed to an agent. Maybe group think will help.
Onward and upward . . .
My first published essay is in this month’s Diabetes Forecast, a magazine distributed by the American Diabetes Association for people living with diabetes. (I once saw it described online as a magazine for people ”suffering from diabetes,” but that is thankfully not the official line.) I’ve been checking their website for the past week, waiting for the May issue to hit the virtual stands and it was finally updated today. So I felt pretty excited as I scrolled through the table of contents, looking for my name and there it was, “The Best Advocate” by Krissy Dietrich Gallagher.
So I clicked on it and I read it, my very first real published piece of writing, . . . and I was so disappointed!
I knew they would make changes, of course, and the editor and I had already gone back and forth, back and forth many times via email trying to nail down the right angle. It was a fascinating process because what I set out to write was a piece about how Austin’s cancer has helped me understand and appreciate what my diabetes meant (and means) to my own parents. That cancer-patient-on-the-elevator story was my jumping off point, the thing that so perfectly linked our two diseases.
So I crafted an essay around that story and was pretty pleased with it. Then when I was informed by the magazine that they wanted to publish it, the message made it sound like my original was too long (which, knowing me, it probably was). So I edited it down and weeded out some extraneous details and sent it back. Well, the next message I received was nothing but confusing; this woman was hemming and hawing and definitely trying to say something without coming right out and saying it. I began to wonder if maybe they didn’t like my writing at all, when it finally hit me: This is a magazine for people with diabetes . . . and my original essay had a very strong “You should be thankful you have diabetes when you could have cancer, lucky you” message to it. Obviously not the message they wanted to promote!
I felt much better when I realized that (and even a little embarassed that I hadn’t realized it sooner) and rewrote the essay yet again. This is the draft I thought would be printed in the magazine and which I was happy enough with:
Nobody cares as much about my diabetes as my parents do. Nobody worries more about complications, works harder to improve medical research, or pins more of their hope on a cure than they do. I am now a 35-year-old adult with a family and life of my own, and my mother still reads every diabetes magazine cover to cover, tearing out articles for me and leaving them in a stack on her kitchen counter. My parents still attend all the local conferences of doctors and researchers discussing their work, often in scientific terms they don’t understand. My parents still want nothing more than for my life to be happy, healthy and “normal.”
When I was diagnosed with type one diabetes at age 13, I thought it affected no one but me. I never stopped to consider what it meant to my parents. I never imagined what it might feel like to watch their vibrant and athletic daughter stick herself with needles or test her blood four times a day. Or what it might feel like to worry about things they had never before considered: kidney failure and blindness, amputation and severe low blood sugar. Their world changed too on that day.
After the birth of my first son, I slowly began to understand what my parents might have felt upon my diagnosis. I suddenly knew the overpowering urge to protect your children, keep them out of harm’s way, smooth their path in life. But it was only an abstract inkling; my child was healthy.
And then I had another child.
And then that child had cancer.
My second son Austin was diagnosed with cancer in both his kidneys at the age of ten months. The same children’s hospital that had treated me so many years before quickly became our second home, as we spent forty-nine nights there, filled with the worry and disbelief and fear that my own parents had felt, multiplied times one thousand. I was forced to look anew at what my diabetes meant and means to them. And I finally understood. I now know about poring over research. I know about pinning all one’s hopes on a different outcome, a good test result, a better life. I know that there is no advocate for eradicating disease as powerful as the parents of a patient. I know that little movement towards a cure or more effective treatment or possible prevention would happen without the constant push and plea from parents. I know that no one cares more about my son living a happy and healthy and normal life than my husband and I do.
And I now understand the pride and awe my parents must feel when I accomplish great things, whether running a marathon or birthing a child. I feel that same pride and awe when I watch my Austin run, climb, jump across the backyard. At age thirteen, I embodied an innocent and optimistic spirit, a belief that I could do anything, diabetes or not. And as a survivor at age two-and-a-half, my son embodies that same innocent and optimistic spirit, a belief that he can do anything, cancer or not.
And he’s right. He can.
Anyway, the “real” one can be found here. It’s not that it’s awful or anything, or even very different from this one, which was already very different from my first and favorite version. But it just doesn’t have my voice. Oh well, a lesson in the “industry,” I guess.
No time to blog…too busy trying to keep up with Braedan!
A few hours after I posted that cute story about Austin declaring himself “all done” with treatment, I got the dreaded call from Jeff saying that the doctors at St Judes did indeed recommend radiation. He still wasn’t sold on the idea, but thought we should set up a meeting with the pediatric radiation oncologist at UH to discuss it further. Mark and I, while very hesitant about radiation, were of course willing to talk about it so I called the office right away to set up an appointment. Well, when the secretary told me that we should bring Austin with us, I expressed some surprise and repeated that we were just having a preliminary discussion, and weren’t yet moving ahead with any procedures. She still thought it was wise and I capitulated, assuming as always that “the experts” know best.
This did not sit well with Mark, who knew that 1) We can’t have a productive conversation with Austin climbing all over us, 2) It would cause Austin increased anxiety to be sitting in another doctor’s office and 3) Whatever they could gain from seeing him in the flesh could just as well wait. So I let him call to inform the office we wouldn’t be bringing Austin along and they gave him a pretty hard time. The nurse got on the phone and insisted, claiming they needed Austin’s height and weight and latest vitals. Mark rightly pointed out that we were in the hospital a mere two weeks ago and they could just use those, and anyway, we weren’t yet at the point where height and weight and vitals would mean anything!
A few minutes after Mark called me with the latest blow-by-blow, an intern called to say that they’d spoken to my husband and wanted to make sure I understood that if we moved forward with radiation, they would in fact “need to lay hands on Austin.” Uh, yeah, okay. Did they think I was hoping he’d get radiated over the phone?
Needless to say, we walked into this visit already feisty, which was unusual for us. We have been extremely compliant this entire time, always friendly, always following the advice of our doctors. But this time felt different. We were not at all convinced that radiation could work for Austin and we were not going lightly down this path.
We went to sleep Tuesday night expecting the doctor to attempt to sell us on radiation as a viable and necessary option and expecting ourselves to turn them down. This idea made me extremely nervous. What if we refused treatment and his cancer came back? Would that be our fault? But what if we did it and his kidney failed and the cancer came back anyway? Or what if the cancer wasn’t planning on coming back in the first place and we destroyed his kidney and then he got radiation-induced leukemia in three years? Let’s just say, it all felt like too much responsibility for us to bear. These are not the kind of consequential decisions you expect to have to make on behalf of your babies. This is not bottle versus breast, cloth versus disposable, public versus private.
So, let me get to the point already. We walked in there this afternoon with an envelope of unsatisfactory research and a long list of questions. That we never even had to ask.
The radiation oncologist said that there was no research that proved, or even suggested, that radiation could work on rhabdomyomatous tumors. He further said that he was almost certain to destroy Austin’s kidney if he tried. And then he said that, as general practice, they try not to radiate any kids under six and especially under three unless they absolutely need it because the risk of secondary cancers is so great.
I was waiting for him to interrupt himself with a big “But. . . ” like they do on those 48 Hours Mystery-type shows where they lay out one side of the case and have you completely convinced before suddenly revealing the other, completely contradictory side. So I said, “What are the benefits?” and he looked at me, then back at Mark, shook his head and said, “Frankly, I don’t see any.”
He was trying to convince us not to pursue radiation! Let’s review the facts: There is no tumor or mass inside Austin to target with radiation; we don’t know or even think that he has cancer at this moment. Once you’ve radiated a field, you can’t do it again, which means radiation is an all-or-nothing kind of deal–why waste our one chance at successful radiation on nothing? Why subject his body and “the little kidney that could” to this poison if no one thinks it will work? If it comes back in a year, we’ll deal with it in a year, and it won’t be a year he’s spent on dialysis.
Will we worry? Of course we’ll worry. But we would have worried anyway. We would have worried even more if he’d been through radiation, about kidney failure and secondary cancers. We would have worried long beyond the next two years of Wilms-related worrying. Now we wait three months for a CT scan and hope hope hope it’s clear. Then we wait another six months and then another and another and then one day, in the not too distant future, we’ll get to use that other C-word: cured.
Little Austin was prophetic after all. This round of cancer is indeed ”all done.”
April 22, 1986 was a Tuesday. I had just finished last period gym class and was in the locker room with my 7th grade gang of girlfriends deciding whose house to go to after school. This decision usually involved three factors: whose house followed the same walking route as wherever our gang of boyfriends was headed, whose house had the best snacks and whose mom didn’t mind when her home was invaded by twelve giggling girls. (We did not travel light in those day.)
I, so often the ringleader, shook my head and said, “Can’t. I have a doctor’s appointment.”
“Again? You had one last week! Is this about that thing in your eye again?” asked one girlfriend referring to an unexplained stye the week before.
“No, my mom thinks I have diabetes.” I said this casually because I didn’t really think it could be true. I suppose if I had thought about it carefully enough, as I would years later, I’d have been able to admit that I wasn’t myself lately. I was tired and cold, lacking some of my usual tom-boy-but-girly-girl, jock-in-cute-clothing energy. I didn’t feel like myself. But I still didn’t think I could have that.
“No WAY!” Sarah shouted, suddenly all riled up. “My sister has diabetes. There is NO WAY you have it.”
There, she was clearly an expert. Pit her against my mother and her dog-eared Dr. Spock book. So what if I’d been chugging through the week’s supply of milk by Wednesday? So what if I’d gone from already thin to downright gaunt? Sarah knew what she was talking about.
But I parted ways with my friends and trudged on home where my mom and my six-week-old brother escorted me to our pediatrician’s office. I guess I wasn’t really surprised when he walked through the door, after checking the results of a quick finger prick blood test, placed his hands squarely on my knees and looked me in the eyes. This grandfatherly man, who I’d known all my life, now on the verge of retirement.
“Does diabetes run in your family?”
“Nope.” Still casual.
“Well, now it does.”
That was the first time a doctor’s words changed my life.
He told us to go home, pack a bag and head to Rainbow. All of this sounded fine to me until he said I’d be in the hospital for five to seven days. That was not okay. Chronic disease or not, I had a school dance to go to on Friday afternoon. And hospital or not, I had a boy to slow dance with.
But–doctor’s orders, so home we went and, while my mom fixed dinner for my brothers, I packed my bag with a phone cradled under my ear, calling as many girlfriends as I could manage. Most were shocked, one cried, my best friend’s brother thought I was kidding. More than one asked, “But what about Friday?” This dance was no small matter.
My dad came home from work early and we headed down to Rainbow Babies’ & Children’s, a hospital that would become my second home more than two decades later. The four of us boarded the elevator — 13-year-old me, consumed with the horrors of missing the school dance, my parents, consumed with the horrors of having a suddenly sick child, and my baby brother, strapped onto my dad’s chest in what we now know is a Bjorn but what they then thought was a “Snugglie.”
Now this next part I don’t actually remember, being as consumed as I was with above-mentioned horrors, but my mom told me about it many years later. The elevator door opened before we reached our floor to let on a boy, just about my age, except that he was in a wheelchair. And he was bald.
You know what they thought. My parents, whose world had turned upside down, who were overwhelmed with shock, fear and worry . . . you know what they thought. It’s what most of us would think. At least it’s not cancer. They leaned into each other, in their safe corner of the elevator, and they knew. They knew that we could do this. They knew that we would be okay.
And we were, but I’m not there yet. Minutes later we were settling into my room, answering question after question from doctor after doctor and nurse after nurse and intern after intern. And every single time someone new walked in, my mom would announce, unasked, unprovoked, that I had gotten my first period the week before. Can you say mortified? This could not possibly be relevant! I would scowl and hiss, “Mah-ahm,” turning that simple short word into two truly mortifed syllables.
She said it hopefully, as if she actually expected some doctor to throw his clipboard into the air and exclaim, “Oh, that explains it! The ol’ first period-diabetes diagnosis mix-up again!”
No such luck there. Instead I stayed in the hospital for five days, learning how to test my blood sugar and count my carbs and administer my shots. My parents and brothers had to learn too, how to spot a low-blood sugar reaction and what to do about it, what it felt like to give and get a shot. We went around the room, first practicing with saline-filled syringes on oranges and then on each other’s arms. Take that, brothers, who were mostly concerned with whether or not they could still eat donuts on Saturday mornings.
But we all learned and we all made the necessary life changes and we took it in stride. I took it in stride. Right at that moment when I gaining some independence from my parents, diabetes just became another part of taking care of myself. It just became another part of who I was, who I am.
And don’t worry, I didn’t forget: The hospital granted me a two-hour leave of absence on Friday afternoon and my parents picked me up in the minivan and dropped me at my middle school for the dance. I mean, THE dance.
And yes, I got my slow dance.
Saturday afternoon, we were driving through downtown and passed the Cleveland Clinic. Austin pointed out the window and asked, “What this is, Mommy?” (Reminding me yet again of Yoda, with his inverted speech.) I explained that it was another hospital, like the hospital that he goes to.
He then asked why he needed to go to the hospital and I, never one for hiding the cold hard truth, said, “Because you had cancer,” carefully using the past tense. He scrunched up his little face and said, “Stupid. No Auty like it.”
Mark and I heartily agreed that we didn’t like it either and then Braedan piped in with, “I like it, because then I get to ride on the elevator.”
“Oh Braedan, honey,” I started to explain, seizing the teachable moment. ”That could hurt Austin’s feelings. It makes it sound like . . . ” but Austin interrupted, taking matters into his own hands, putting the issue of who gets to go to the hospital to rest once and for all:
“No Bay-den get to go hop-a-bul. Autin all done.”
Spoiler Alert: This post is not about Austin’s cancer. I know, you’re thinking, “Wait a minute! You mean there are other things in the world for Krissy to think about, write about, care about?” Actually, yes. So this one is about riding a bike.
You know how people always say, “It’s just like riding a bike,” meaning that once you’ve done it, it’s so easy to do again? Well, that’s not always the case. And this is not some great metaphor or analogy. I am literally talking about riding a bike.
Braedan learned to ride a two-wheeler without training wheels last summer, when he was just 4. We were all pretty impressed with this accomplishment, especially Braedan himself. I would take him on runs with me, which was great fun for both of us (and way easier than pushing him in the jogging stroller). The only problem was that the bike we bought him was too tall. We knew this was the case, but figured it made sense to buy one he could grow into instead of needing to buy a new one each year. So last summer, when his feet couldn’t reach the ground, Mark or I had to race along behind him and help him stop. He grew pretty accustomed to this and I think it gave him a sense of security knowing that we were there to catch him each time he faltered (again, I mean that literally as well as figuratively).
So now that it’s finally (finally!) showing signs of springtime in Cleveland, we pulled his bike out of the garage, dusted it off and were all set to go. I excitely told him that he’d be able to ride it on his own this year without needing us to stop him every time because he’s so much taller (as evidenced by his pants that keep “shrinking”). He stood over the seat with both feet firmly on the ground while I invoked my dad’s best pre-game coaching speeches. He’d be independent, he was such a big boy, not needing his parents’ help anymore!
To no avail. He refused to even try. “No. I can’t do it. I’ll fall.” We went back and forth, me encouraging, him denying, never getting anywhere.
“But you know how to ride a bike,” I implored. ”You did this all last summer. You were great at it.”
Still nothing. So I switched tactics, reminding him that new things were hard for everyone and we all failed in the beginning but that was the only way we ever learned. Do you know how many times Babe Ruth struck out? I wanted to ask but since he doesn’t know who Babe Ruth is and doesn’t even know what striking out means, I dropped that favorite line of high school counselors everywhere.
And then I decided, without really deciding, that it would be wise to shame my child into doing something that scared him: “It was big deal that you could ride your bike when you were four,” I taunted. ”But now that you’re five, everyone can ride a two-wheeler.” All the kids are doing it. Is this really the parental wisdom I want to impart? Do it because all your peers are doing it and they might laugh at you if you can’t?
Oh boy. I cleared my head and dropped the subject altogether. We played on the swingset for the rest of the morning and then I pulled them to school in the wagon. But it bothered me. Why wasn’t he willing to try? What is he so afraid of?
I don’t have the answer, no brilliant last paragraph of resolution, no touching description of Braedan zooming down the sidewalk on his big boy bike, waving goodbye over his shoulder. The bike is sitting in the garage, awaiting that moment when he decides, on his own terms, that he’s ready to try again. I know he’ll be able to do it and I know he’ll be thrilled when he does. And I know I’ll watch him proudly and then suddenly turn wistful and think, “Oh, my baby. Why does he have to grow up so fast? Why doesn’t he need me anymore?”
Alrighty, so now that I’ve gotten really technical and given you all so much information, there seem to be a lot of questions. This is what happens when I share the story in real-time — I can’t just make sweeping generalizations about it after the fact, but instead drag you all through each seemingly contradictory medical moment. So I’m taking today to try to answer some of the questions I keep hearing over and over. Feel free to post additional ones in the Comments section and I’ll do my best to come up with regular-person answers that don’t require years of med school to understand.
Why is it so good that this isn’t a recurrence (if this indeed isn’t a recurrence)?
This is the big one I keep hearing, which I think I mostly answered in Monday night’s post, which was all about survival statistics. Basically, if this particular cancer comes back once, it then has a tendency to come back again and again. Sooner or later, it would just be too much to successfully treat, either because you’d have used up all the chemo drugs (many of which have maximum lifetime doses), or because once you’ve radiated a certain spot, that same spot responds less well to radiation again, or because there are only so many times can you open up a child’s body and manipulate his insides to do a surgical resection. So it is much much better if this was just a little “leftover” cancer from the first round, which now we can think/hope/believe we’ve completely removed.
Can we be certain if this is a recurrence or not?
No! Ah, modern medicine . . . there are so many more unknowns than I ever imagined. But I talked about this in the last post and again below. And it doesn’t actually change our course of action moving forward, but would change the way we feel moving forward.
What does “chemo-resistant” mean anyway?
This is tricky and hopefully not too dreadfully boring but here goes — Wilms’ tumors are made up of three types of cells: cancer cells, muscle cells and lining cells (which all have fancy medical names). Most Wilms’ tumors are primarily cancer cells, with some muscle and lining thrown in for good measure. Austin’s tumors, on the other hand, were almost entirely muscle, upwards of eighty percent. (I am talking about the original tumors from back in August, September and October of 2007, by the way. I’m not trying to confuse you even more!) Chemotherapy drugs are designed to target and kill cancer cells. So only a very small percentage of Austin’s tumors responded to the chemo as expected. There was some chemo-induced shrinkage but it was only on a tiny portion of the tumors, while the muscle cells were growing or multiplying or differentiating so rapidly. This is both good and bad. Good because the tumors weren’t all that cancerous (cancer is, after all, a relative term). But bad because the growth of the tumors was so very dangerous, not because they were cancer but simply because they took up so much damn space in his small body, pushing aside his right lung and causing his blood pressure and heart rate to skyrocket.
So once we realized that his tumors had this rare rhabdomyomatous differentiation, why did he keep getting all that chemo?
Well, this one is a even trickier. The best answer is because we just weren’t entirely sure what we were dealing with. There are very few cases of kids with tumors quite like this and I think that, into the future, Austin’s case may actually change the protocol for kids across the country with this variation. The very fact that his tumors didn’t respond to chemo is part of why we can now say that tumors with rhabdomyomatous differentiation don’t respond to chemo!
Also, and this is important, there is a tendency to over-treat pediatric cancer patients instead of undertreating them. When doctors and parents have a child with cancer, they do whatever they can to get rid of that cancer, even things that are potentially harmful. Cancer treatment is dangerous, both in the short-term and certainly the long-term. Many cancer patients die of their treatment, not of their disease, which is sort of stunning when you stop to think about it. They die from the medicine, such high doses of chemo destroying their immune systems so that when they get some random virus their bodies simply can’t fight it. Chemo is toxic after all. And both chemo and radiation lead to secondary cancers. But this is stuff we parents don’t have the luxury of considering until after the fact. And doctors desperately want their patients to be cured of their cancers, to live, and they want to do it without causing harm, but the research simply doesn’t exist yet to support how little you can do and still have a favorable outcome. This should be the next frontier in research – how can we treat one terrible thing without causing another?
Jeff has said to me many many times in the past nineteen months, “We could probably treat Austin’s cancer with a chisel, but all we have is a sledgehammer. We know the sledghammer will work and so we use it. But we also know it will cause all sorts of peripheral damage.” But what choice do you have?
So Austin had eight months of chemo, just in case. Did it work? Who knows? This little tumor we just removed had been treated by chemo, which means (as I said the other day), that the cancer parts of it were destroyed but the muscular parts still grew, albeit much more slowly than the original tumors.
Geez, I just read this through and am really hoping it helps and doesn’t hinder!
So, what now?
Not much apparently. Definitely no chemo and probably no radiation, although the final verdict on that has yet to be made. I do know we’ll do another CT scan in three months, and, if that one is clear, we’ll get back on the every-six-month schedule. So ultimately,while Mark and I have increased worry, the boys’ lives should not change. Braedan will still be allowed to have friends over, Austin can still start preschool in the fall (something he begs for every day when we drop Braedan off), we can go on family outings to places filled with kids and germs and fun. Life goes on.
The clock, though, has been reset. You may remember that, because Wims’ tumor recurrences tend to happen within the first two years, a child is not considered “cured” until they are two years from the end of treatment, which would have been February 2010. Now we set our sights on February 2011, so mark your calendars.
And finally, the most difficult question of all to answer: How about a family picture that shows all four of you?
The best I can do are these from our trip to Jamaica in January, when we took the boys to a petting farm for a pony ride and they absolutely hated it. You would have thought we were making them swim with crocodiles or something, there was so much crying it was actually funny. So enjoy . . .
If you were a fly on the wall in our house three weeks ago and then again today, you’d have trouble noticing anything different. Two little boys playing, tussling over toys, begging for jelly beans (well, there are definitely more jelly beans than there were three weeks ago!), two parents watching over them, trying hard to balance the easy fun with important life lessons. You may notice the older son whining a bit more and the younger one struggling to sleep at night. You may notice the parents looking a little more pensive or a little more tired (see above statement re younger son struggling to sleep at night). But you would never ever be able to guess the emotional turmoil, the seismic shifts in perspective, that had taken place in the course of fifteen days.
The good news right now is that the doctors seem to be considering this episode something other than a recurrence. “Residual tumor” I think is the way to describe it. It can be quite confusing for those of us not trained in oncology but it seems that some teeny tiny microscopic cancer cells were left inside Austin’s belly following the October 07 surgery. Now remember, that surgery removed four tumors and 40% of his kidney. And the surgeons were trying very hard to remove as little of the kidney as possible, so they may have left behind a few (invisible) cancer cells here or there. Those little cells would have then been treated by chemo for almost five months (which is why the tumor they removed last week looked like it had been through treatment) and then, ever so slowly, they would have grown (because Austin’s type of Wilms’ was mostly resistant to chemo) from teeny tiny almost non-existent cells to a one-by-two-centimeter tumor that finally showed up on a CT scan one year later.
This little fact (whether or not this is actually an official recurrence) is enormously consequential in terms of Austin’s longterm prognosis. The survival statistics for Wilms’ tumor recurrences are horrific, so awful that Mark and I only discussed them in hushed tones, as if to speak them aloud would have made them more true. I certainly couldn’t bring myself to type them here — it was all sad enough to begin with. But now that we feel a little safer, here they are:
Depending on which piece of research you’re reading and which category of Wilms’ you’re talking about, the five-year survival rates after recurrence range from 23% to 43%. Twenty-three percent. Or the good stuff, the research that we actually felt optimistic reading: forty-three percent! Basically, for every 100 kids with a recurrence of Wilms’ tumor, three-quarters of them die.
Not acceptable, not even close.
Imagine, god, just imagine if someone offered your child a sippy cup of juice and there was a 67% chance that it was instead a deadly poison. Or if your pediatrician suggested a new vaccine that kills kids 57% of the time. Right. You’d run screaming for the door. No parent should have to look at numbers like that in regards to their child’s life. That is not right.
But that’s where we were two weeks ago, that is the thought we lay down with each night, often with Austin asleep between us. That is the thought we carried with us through each day, trying to keep things as normal as possible, trying not to let Austin get away with hogging all the toys, trying not to yell at Braedan if he so much as looked sideways at his suddenly fragile little brother. There was a sense of desperation — how long will it take? How long do we have? But there was also a slow and reluctant acceptance. We simply had to face reality, we could not go on with our heads in the clouds refusing to see what lay before us. We were both, for the very first time since all this cancer business began, we were both starting to accept the idea, the possibility, the probability, that we might live our lives without him.
And now, suddenly, remarkably, we find ourselves almost back where we were three weeks ago. A little blip, a slight detour on our cancer journey. Austin is recovering, there is no treatment plan looming ahead of us (and cancer without cancer treatment doesn’t seem so bad), the official stats should be back in the 80% range. And life goes on. The boys are none the wiser: Austin is sore and Braedan hyper, but a few weeks from now, all will be well again in their world.
But Mark and I know. Mark and I will live with that feeling for a long time. Our time with him feels a little more precious, our hold on him a little more tenuous, nothing is certain, there are no guarantees.
That fly on the wall might not be able to see it, but we are changed.
In September 2003, Mark and I went to Boothbay Harbor, Maine for the wedding of his best Peace Corps buddy. I happened to be both six months pregnant with Braedan and one week shy of losing my beloved grandmother, so I was, to say the least, a little emotional. We were tooling around the town one day, looking in the little shops, when I stumbled upon Story People. Story People are these drawings of crazy, fantastical people with short “stories” written into the artwork. (In my opinion, the stories themselves are the artwork.) They’re poignant and funny, heart-breaking and beautiful, and they made me cry, right then and there in the store. Mark shrugged sheepishly and offered up my pregnancy as an excuse, but the guy behind the counter assured us that at least one customer each day cries when reading the Story People.
I bought this one and this one for Braedan’s nursery, and they now hang on Austin’s walls. They’re my favorite gifts for when people have babies or find the one they’ve been waiting for (I bought this one for Mark, who happened the be just the one I was waiting for). And then, following the death of one of our favorite fellow patients, I sent this one to her mother. I felt guilty about it afterwards because it was so heart-breakingly sad, but I figured there was no way for her to be any sadder than she already was and at least there was some small beauty in this. And sometimes some small beauty is all you have.
Today, I have another Story People print ready to hang on our wall. I actually bought it a year ago as part of a buy-three, get-the-fourth-free deal and was saving it to use as a possible gift. But I’ve realized that it fits no home more perfectly than our own. People the world over and throughout history have spent time, money and energy seeking out the extraordinary. Extraordinary adventures and accomplishments, extraordinary wealth and fame . . . but I have learned (the hard way) that it is the ordinary moments that make life beautiful. Today we walked to the grocery store, colored Easter eggs, blew bubbles in the backyard. Tonight we’ll make homemade pizza with the boys spreading the sauce and fighting over shreds of cheese, we’ll read books together and snuggle up before bed. We’ll kiss our children goodnight and head downstairs for a glass of wine and a brief hour of quiet. We will be ordinary people doing unremarkable things. And it will feel remarkably extraordinary.
This is the song that was used as the backdrop to Austin’s Miracle Story for the Rainbow Radiothon last fall. Sit back and listen to both, especially that line that says “Isn’t it exceptional how everything works out after all,” then wipe your tears and go hug someone you love. It is indeed exceptional.