You can too

At the end of last week, I was starting to get worried about our head-shaving event this year, feeling like we didn’t have enough shavees, no one was interested, it was a one-time wonder, yada yada yada.  Then I had thirteen new registrations on Friday and Saturday alone.  We are now up to 47 children and adults shaving and 3 girls cutting and donating, which is a few more than we had at this point last year.  It’s still not too late (I did order a few extra participant t-shirts in an optimistic moment), but it’s almost too late so if you’re still signing up, do it today.

So I’m feeling pretty good about our number of people, but the number of dollars raised leaves a little to be desired. Actually, it leaves about twenty thousand to be desired! Last year, not knowing what to expect, I aimed low, with an initial event goal of $15,000. I quickly upped that to $18K, then $20, eventually $30 and finally settled on $35,000, which we surpassed.  This year, I thought I’d save myself the hassle of editing the online goal and started high: $45,000. Well, we are currently at just over $16,000 and Monday I lowered the total to $35,000.  Boo.

So, now I’m gonna lay on the pressure. This is serious business. This is the business of saving lives. Every parent of a child with cancer already knows the ugly truth about how other organizations use images and stories of children to do their fund raising, but give pathetically little to childhood cancer research or treatment. The esteemed American Cancer Society gave a mere 3.7% of its nearly 2 BILLION dollar budget to pediatric cancers in 2011. Now, I get that cancer affects a great many more adults than children and I, of course, support well-funded and rigorous research into all adult cancers. But I will refuse to give the ACS a single dollar until they stop prostituting photos of sick children, all in the name of opening donor wallets. That pisses me off. (Can you tell?)

St Baldrick’s is different. All they do, all they fund, is childhood cancer research. That is what they devote every second and every dollar to. And it’s research that is truly making a difference. We have St Baldrick’s fellows right here at Rainbow, making discoveries and treating kids every day. I’ve given you the stats before: how many kids are diagnosed, how many survive, how many don’t. But think about this for a moment: the treatments that kids receive today, Austin included, are developed with adults in mind. They’re intended for use on adult bodies, which are distinct and unique from the rapidly developing bodies of young people. The chemo agents Austin had pumped into his bloodstream for all those months were never meant to be used in a one-year-old. Or a three-year-old. So, by the time they hit age 30 or 40, 73% of the “lucky ones” will have a chronic health problem as a result of their treatment. And Austin will no doubt be one of the 42% of survivors who will be living with a severe or life-threatening condition. In fact, he already is.

The very medicines we give our children to keep them alive will most likely kill them.

That’s not okay. That’s not just an unfortunate consequence, the price we have to pay for keeping our babies alive. It’s unacceptable. And St. Baldrick’s knows it. And they are working tirelessly to change it.

And guess what? You’re not just an idle bystander, listening helplessly to bad news. You can actually do something. You can save a life. And be a hero. And all you have to do is shell out a few bucks.  It doesn’t even have to be on the heads of my children; they’ve raised more than $1,600 apiece. You can give to some of the lovely and brave children who’ve raised just $15. Or to the female high school senior who’s shaving her head, and who I’m really hoping will hit the thousand dollar mark. Or to the young mom who’s so terrified that her children may someday have cancer that she figured she better do something about it right now. And so she’s doing something about it, right now.

And you can too.

Clinic of miracles

Austin had his two-and-a-half year scans today.

He went briefly to school to partake in the Grands Day celebrations, but I picked him up at 10:30 and we headed down to Rainbow for a long day of procedures. First an EKG and ECHO, because he needs clearance from cardiology before his December 7th surgeries (tonsillectomy and finger repair — more on those next week). Results from both were fine: The VSD that marked our first step towards diagnosis more than five years ago still exists but is so tiny that it poses no threat at all. The enlargement that caused concern during his second round of treatment is less pronounced, probably because his blood pressure is as normal as it’s ever been. His heart is functioning fine and, while we need to continue monitoring it well into the future, there is no current worry or need for action or cause for concern.

Then it was time for abdominal ultrasound, always the most significant test of the day.  But that too was normal, no changes from last time, the ol’ inappropriately labeled “unremarkable” exam. Then a chest x-ray, which I haven’t actually seen results for but we’ve never had any real reason to worry about cancer metastasizing to his lungs.

And then it was off to see Dr. Auletta in the out-patient clinic. After labs and a quick physical exam, he sat talking with us and reflecting on the day he’d had so far (more on that tomorrow). Ever conscious of respecting patient privacy, he nonetheless commented that today he’d seen the “clinic of miracles.” The kids and their parents who happened to walk through the doors today were the remarkable one, the lucky ones, whose stories could have ended quite another way.

You know, a lot of children diagnosed with cancer in the twenty-first century have excellent prognoses right from the very beginning. Of course, it’s still a big deal and still terrifying for their families (all you hear on Day One is “Your child has cancer” and nothing else quite makes it through). But the doctors who see those kids on their very first days know, that as long as nothing goes horribly wrong, as long as science works as it’s supposed to, they’ll be alright. (Austin was actually in that category for about one day.) And then there are others who the doctors know, despite all they may hope and despite how hard they end up trying, that they won’t be alright. And then there are the kids in the middle, whose cases are tricky, whose cancers are unpredictable, but who still present with a shred of hope. They need a hell of a lot of work, they need vicious medicines and endless care and a ferocious internal fight. But those are the kids who can become miracles. And Dr. Auletta saw them today.

Austin among them.

Green, salmon, goldenrod

I’m not going to keep harping on the start of the school year (I’ll have other things to harp about soon, I promise!), but here is the link to an article posted on the St. Baldrick’s site last week.  Which contains, as Mark pointed out, the best single line description of Austin’s personality to date. Enjoy….

Well, I changed my mind because I know a lot of you don’t ever click on links (I can see these things; the WordPress blogger is all-knowing), so here it is (no copyright laws are violated because I wrote the darn thing):

Starting Kindergarten After Battling Childhood Cancer

August 30, 2012

It’s that time of year again . . . the smell of freshly sharpened pencils in the air, the sound of school buses rolling down the street and the stack of paperwork for parents to fill out each evening. As I sit at my kitchen table completing the blue Who’s Eligible To Pick My Child Up From School form and the goldenrod Emergency Contact form and salmon Photo Release form, I am stopped in my tracks by the green Medical History form.

It’s nothing surprising, just your usual list of vaccinations and set of Yes/No questions: Has your child ever had heart problems? Seizures? Allergies? Surgeries? Kidney problems? Other? And then there’s my favorite: “If yes, please describe,” followed by one-and-a-half single-spaced lines. They actually want me to explain my child’s dramatic and life-threatening three-year illness in less than seven inches of space?

I don’t think so.

So, instead, I neatly write “Please see attached” and proceed to type up a 370-word addendum that describes in dry, emotionless language Austin’s diagnosis with bilateral Wilms tumor at the age of ten months, his four initial abdominal surgeries, his eight months of chemotherapy. Next paragraph includes his relapse, additional surgeries, twelve rounds of radiation, six more months of chemo. Last paragraph details his daily blood pressure medications and the restricted diet he follows due to the fact that he’s lost his entire right kidney and half of his left.

There. Done. Ready to repack his folder and send him off to kindergarten, a milestone we were never sure we’d reach. But nowhere in those myriad school forms did I truly capture my child. Any teacher who sits down to read those sheets would fail miserably to picture Austin in their mind. I can almost guarantee that they would imagine a sad, sickly boy, struggling to keep up with his classmates and opting out of gym class. Scarred and scared, feeble and hesitant.

There is no way they could conjure up the real Austin, the last kid you would ever describe as feeble, cartwheeling across the lawn, executing perfect front flips on the trampoline (or bed or couch), racing around the block on a two-wheel bike. No way would they picture this boy, spunky and clever, both brave and shy, extraordinary in so many ways, and yet so very very ordinary.

But I will let him go, with a heart both heavy and thankful, into the world of big kid school, where he can define himself. And I will know that those completed forms stuck in his backpack are only one tiny part of this truly remarkable boy.

 

Don’t worry, be happy

In the madness that is springtime (more on that later), I missed two significant anniversaries last week. One was Tuesday, the official date to mark two-years-since-the-end-of-treatment. As you may (or may not) remember, we didn’t know that that day was Austin’s last chemo. We simply finished our three-day hospital stay and went on home, thinking we’d be back again in a few weeks. But his kidney was failing and we spent weeks going back and forth (that you should remember) before ultimately deciding to halt all chemo and trust that what we’d done was enough. And so far, it has been. Or so we’ll see on Thursday.

The other anniversary was last Saturday, 26 years since I was diagnosed with diabetes. Two-thirds of my entire life. I noticed recently on Facebook that someone had received their 25-year medal from the American Diabetes Association and I felt sort of discouraged. Not that it’s not an accomplishment to live twenty-five good years with this disease, but I sure hope they make a 75-year medal because that’s what I’m planning on needing.

My mom and I were having a conversation with some people a few weeks ago about the role of worrying in parenthood (something I’m not a huge fan of, despite its apparent inevitability). She said that when I was diagnosed, she stopped worrying about me. Not entirely, of course. She’s always kept on worrying about me, either about my diabetes and how it would affect my longterm health or about all the other aspects of mothering a teenage girl. But I thought that was interesting and asked, “Why? Because you felt like the worst thing had already happened?” (which is how I often feel about worrying — or not worrying — about Austin). And she said, “No, not yet. But that the worst thing could happen and that I might as well just let you be happy. That you could be blind at 35 or never be able to have children or lose your legs or die young.”

The worst thing could happen to any of our kids — any one of them could get sick or have a terrible accident, no matter what we do to protect them and certainly no matter how hard we worry. So while we should still make them eat their vegetables and insist they do their homework, we should also relax a bit and let them be happy.  Because you just never know. You know?

 

 

Counting down

Here’s a little more “feel-good magic” for you, this time closer to home.

Austin had an appointment with his nephrologist last week and that little kidney is holding steady. His creatinine was .75, one of his lowest measures yet. Well, not “yet” like forever, but at least since the kidney failure scare of March and April 2010. All other numbers have held steady, which means that, while still officially in Stage 3 renal failure, this child’s half-kidney is still kickin’.

Which effectively removes one of our life’s greatest fears: years of kidney dialysis, being hooked to a machine every other day for four hour stretches, all in a windowless room. Nope, that’s not likely to ever ever happen — ever — because my child’s two-year scans are scheduled for May 3.

That’s right. Two weeks from now, Austin will have an abdominal ultrasound and a chest CT that could and should mark him two-years cancer-free. Two years cancer-free. TWO YEARS CANCER-FREE. Something we’ve been waiting for for nearly five years.

I, more than anyone, should know not to count my chickens before the hatch, but really, . . . we have no reason not to expect that these scans will be as clear as the others have been for the past twenty-three months.

And, of course, I’m also well aware that clear scans that day guarantee nothing. They certainly don’t mean that new cancer couldn’t start growing the next day. Or that old cancer couldn’t return the day after that.

But — and it’s a big ol’ but — the odds are enormously in our favor once we make it past the two-year mark. Enormously. The chances of his Wilms tumor ever returning will be very very slim once we’ve hit that milestone. And, as important in our minds right now, if his kidney should fail he’d finally be eligible for transplant.

Seventeen days. And we’ll finally get to pop open that fancy bottle of champagne my dad’s been saving for us for years. Seventeen days.

A grain of salt

I know I promised links to the media coverage of our event but they are impossible to find! Strange, because I was under the impression the internet was just one big archive of everything that’s ever happened to anyone, anywhere, especially video news coverage from just a few days ago.  But I’ve sent messages to Fox 8 and 19 Action News, which both covered the event on their 10pm news Sunday and again Monday morning.  In fact, when I went through the line at the grocery store Monday, the cashier took one look at Austin’s bald head and said, “So that was you on the news this morning!” I have both shows DVRed on my TV but can’t for the life of me locate a link online.

But here are a few other options: Cleveland Heights Patch did a great video, found here, that makes me cry every single time I watch it. It’s a follow-up to the article about Austin featured on the site last week, which those of you on Facebook have already seen.

Bob Rosenbaum, whose son shaved on Sunday, wrote a post for the Heights Observer that can be found here. He’s right: the threads that connect us are many and they are strong.

I also promised that I’d upload all of Dallas’ photos to a public site, but I just haven’t managed to do it yet. Among the regular busi-ness of everyday life, Austin had his upper GI exam this morning. Remember this little bump in the road? It actually turned out to be nothing — all the potential problems were ruled out and his stomach seems perfectly fine. Which is pretty lucky, because had there indeed been adhesions or an intestinal blockage caused by an old surgery, he might have required a new surgery. Of course, I’ve learned to take all the “maybes” and “mights” with a grain of salt and worry only about what is really and truly happening.

The test itself (a series of x-rays and images taken over several hours, after drinking a Barium “milkshake”) was also no big deal, although he sure didn’t like not being allowed to eat this morning (even though most mornings he refuses breakfast!). Just another few hours wasted wandering the basement hallways, killing twenty minutes here and twenty minutes there between procedures. Austin was a trooper as always, finding fun in the oddest places. But there’s something about being in that building — it just sucks the life out of you. I always come away feeling completely exhausted, even when we didn’t actually do anything.

But we were home in time to enjoy most of this summer-like day outdoors, riding bikes and getting muddy. Like any regular five-year-old should.

You matter

We are well on our way.

The twenty-nine brave shavees registered for the Cleveland Heights St. Baldrick’s event have raised more then ten thousand dollars. And we are well on our way to reaching our event goal of $15,000. Of course, if every shavee actually met their own individual goal as stated on their page, we would bring in a grand total of $24,710. It seems like a lot for a first year event and I know I do a lot of asking, but I believe that by working together, we can make that happen.

It’s worth remembering that St Baldrick’s is not about people’s hair and it’s not about fundraising competitions. It’s not about the entertainment at the event, although I do have a balloon bender and the Heights High Barbershoppers both confirmed , in addition to the Irish dancers. It’s not about spraying your bald head green and proudly showing off your peach fuzz.

It’s about kids. And it’s about lives. There are 36 children diagnosed with cancer in the United States every single day, 46 if you count teens and young adults. One quarter of them will not survive. More children die of cancer each year than of AIDS, asthma, cystic fibrosis, diabetes, and congenital anomalies combined. Granted, survival rates have gone up dramatically over the past twenty years and that is certainly worth celebrating (we celebrate it here every single day). But two-thirds of those kids who do survive live with life-long health complications as a result of their treatment. Sometimes these are relatively minor, like learning problems or infertility (by “minor” I only mean not life-threatening because I bet if you ask people with learning problems or infertility, they’d tell you those aren’t “minor” at all). Others live with major health consequences, like Austin. Yes, we have cured him of his cancer (so far), but at what cost? With more funding and better research, maybe there would have been targeted chemotherapies that could have shrunk his tumors without necessitating the removal of one and a half kidneys. This are not small things, trivial side effects. These are life-altering.

It is important to note that research into preventing and treating childhood cancers is woefully underfunded. While organizations like the American Cancer Society like to include images of children in their advertising materials, a measly 4% of all their dollars raised go to pediatric cancers. Of course, cancer strikes a huge number of adults and I’m not in any way suggesting that they are not worthy of improved treatments. But think of the number of years a child has to live with the consequences of having had cancer. If a 65 or 70-year old receives a chemo drug that causes heart damage in fifteen years, well …? Not great, but so be it (most Americans aged 75 to 80 will have some form of heart damage already). If a one-year-old receives that same chemo drug (as Austin did) and may have to contend with heart defects at the age of sixteen? That’s just plain wrong.

So, if you’re still thinking about signing up or donating, know that these events and the money they raise make a true difference. You are impacting the lives of hundreds of thousands of children and all those who love them. Think of the road we’ve all been on with Austin over these past four years, the pain and the fear, the grief and the worry, the exhaustion and the uncertainty. Let’s take that away from the next family. Let’s make it so no other baby, no other mother, no other family has to go through what we went through.

And yes, let’s have fun at these events — fun is part of what makes them so special for cancer families (we need a little light in the darkness of treatment), but let us never forget why we do this. Every head shaved and every dollar raised matters. You matter.

What matters most

First things first, watch Fox News at 6 tonight to see me and Austin down at the hospital today (what is it with me and Fox News? I guess they’ve never checked my voting records!).  Thanks to his role as a St. Baldrick’s Ambassador Kid, he is becoming quite the little celebrity! As soon as I get the video clip, I’ll post it here for those of you who live out of town (or only surf the blogosphere after-hours).

And now, the real first thing first: Today’s results were all good.  Well, not exactly all good (keep reading), but good in the ways that matter most. His kidney function is holding steady, which is fabulous. His CT and ultrasound show no change to his lungs, kidney or liver . . . also fabulous. There is no indication of any cancer anywhere inside his body.  So, in terms of Wilms tumor, Austin is healthy as can be. And in terms of kidney function, he is as healthy as can be expected.

But (ah, the dreaded but), there are some other troubling issues. Only slightly troubling, mind you, especially speaking in relative terms. The radiologist thinks that the liver looks like it’s “coarser” than in the past.  Not anything inside the liver (that old spot has remained unchanged since August 2010), but the make-up of the liver itself.  He just felt like it looked . . . different.  Vague, I know. Dr. Auletta wasn’t sure what to make of this either, especially since Austin’s liver function is and has always been normal.

The other thing is that there seem to be some . . . stuff in his stomach.  It could be calcium build-up from all the Tums he takes to bind out the phosphorous in his diet or adhesions due to all the surgeries he’s had (not a terribly unusual side effect of being cut open and manhandled that many times). They did recommend doing an upper-GI test, just to see if there’s any action we need to take before an actual blockage occurs.  I’ll learn more about all of these things in the next few days after the various doctors on Austin’s team are consulted and a formal report is issued.

All in all, it’s fine. What matters most is that there’s no cancer and a still-working kidney. But, as I said to the news reporter today, two-thirds of the children who survive their cancers live with long-term health problems as a result of their treatments.  The very things that made Austin better are now the very things that can make him sick. We know that his cancer story will never be over, even if the cancer itself is gone. He will never actually be the normal kid he appears to be.

But, hey, we’ll take him, abdominal adhesions and all.

Mindset

Sometimes it’s hard to get back into that old mindset . . . that old cancer mindset. I had two other, completely disease-free topics I was going to write about today, and then I doubled checked my calendar and was reminded that Austin has his 20-month scans tomorrow.

Twenty months . . . now that’s a significant chunk of time in the life of this small boy, who has battled cancer two and a half times in the past four-plus years. Twenty really really good months, of health and happiness and growth and energy and normalcy. But tomorrow we’ll go back to the hospital, after Austin makes a brief appearance for his first day back at school (which should give me just enough time to run and shower). He’ll have his regular bloodwork to check his kidney function, followed by a chest CT to look for possible metastasis to the lungs and then an abdominal ultrasound to look at the kidney, pelvis and liver (another favorite site for Wilms tumors when they decide to move around and, of course, the current home of that mostly unidentified “fatty tissue” we’ve been watching for the past year). Then a follow-up with his oncologist to go over the results.

The whole thing should last about four hours, with a break for picnic lunch thrown in and quite a bit of exercise moving from the sixth floor of the cancer clinic to the basement of another building and back again. If all goes well — which we certainly expect (not that our expectations mean anything in this game) — he’ll be free again until the end of April, when we have his eagerly awaited two-year scans. Those are the gold standard, although we are well aware that they will give no guarantee that his cancer will never return.  Nothing will give that guarantee. But they will mean that he has reached a critical milestone and that the chances of his Wilms tumor recurring are extremely small. The two-year mark will also mean that, should his kidney fail, he can then be eligible for transplant without dialysis (or without too much dialysis; sometimes the time between failure and actual transplant can take some months due to many many factors, not the least of which is identifying the actual kidney that will go into his body). But those are discussions for another time.

For now we have this to buoy us onward: A neighbor of my mother’s attended an event at the hospital recently in which the Chief of Pediatric Oncology was talking about the importance of research and how it directly impacts patient outcomes.  He presented three case studies as evidence, one of them about a boy named Austin with bilateral Wilms tumor (say, that reminds me. . . ) who he described as “cured.” I asked my mother several times if she was sure that was the exact word that was used and she was very very sure. “He said ‘cured,’ Krissy. That’s the whole reason Ann stopped to tell me about it.”

Cured. Well, that’s not a word we allow ourselves to use too often. Never, in fact, have I referred to Austin as “cured.” But after tomorrow, and after April, maybe we’ll just have to change our vocabulary. And our mindset.

Luxury

Austin had an appointment with his nephrologist today. That’s the kidney doctor for those of you not in the know. While we don’t have any official results from his labs yet, she did say that his estimated GFR is now about 60. If you remember back to last spring when we were trying to decide whether or not to continue chemo, our dilemma was driven in large part by an abysmal GFR of 27. Anything below 30 makes a patient eligible for dialysis and a GFR below 15 indicates that it’s time for transplant.

So, while 60 certainly isn’t normal, it’s pretty darn good.  In terms of predicting what’s still to come … well, that’s a dangerous game for anyone and an extremely inaccurate one when it comes to Austin, who sits all alone is his own little category of patients (or patient, singular, since he’s the only one with quite his history of procedures and risk factors). But she did say that this little kidney could last and last … three more years, five more years, ten more years.

We are back where we were the first time Austin finished cancer treatment, when we assumed his kidney would keep chugging along until puberty when rapid growth and muscle development would put such stress on the little organ that it would stop working and finally need to be replaced. That scenario was thrown completely out the window during his relapse, as the kidney seemed to plunge deeper and deeper into distress, caused by the relentless onslaught of surgery, radiation and chemo. A year ago, we were hoping for a kidney that would work for weeks and months, not years and years.

Funny how life’s victories and traumas are all of a relative nature. If I’d had a perfectly healthy son who suddenly experienced kidney failure and needed a transplant at age 15, I’d be devastated.  But for us, considering where we’ve been and all we’ve had to endure and all we’ve almost had to endure, kidney failure in adolescence seems like quite a luxury. Quite a luxury indeed.