You are currently browsing the category archive for the ‘Longterm Effects’ category.

You know what they say about those, right?

During Austin’s second bout with cancer, when he was 3 1/2, we were told that his kidney would probably last until he hit puberty when a growth spurt and added muscle mass would put it into overdrive, causing it to eventually peter out. At the time, we thought that was great news. (Who can even envision your child actually reaching puberty when they’re just 3 1/2?) We’ve even joked over the years about how that same piece of news would sound so horrible if told to “regular” parents, but how welcome it was for us. I mean, we were being given ten good years.

And ten good years we’ve had. Austin will be 14 this fall, he’s taller than I am, and he has to shave his little mustache every few weeks or so. The child has definitely reached puberty.

IMG_3249-2

 

                               

So it’s happening. He had been in Stage 3 renal failure for most of the past decade and is now in the lower end of Stage 4. Based on what his numbers have done over the last six months, we expect that he’ll reach Stage 5 within the next three to six months. To put it in numeric terms, his GFR (you don’t even have to know what that is) was 29 in the end of December, 26 in the beginning of April and 22 last week. Once it’s under 20, he’s eligible for transplant and once it’s under 15, he would likely need thrice weekly hemodialysis if he wasn’t already transplanted.

Of course this will all be based both on what his labs show and — perhaps most significantly — on how he feels. As of this moment, in true Austin fashion, he feels totally fine. So we could possibly keep this kidney going for up to a year if we’re lucky.

Mark, Austin and I have just returned home from a long “treatment options meeting” with his nephrologist, the dialysis/transplant nurse practitioner, the social worker, and the dietician to walk through our options.

First things first, we simply carry on, no immediate changes except that we’ve added two new meds so he’s taking five or six each evening plus a once monthly shot, which we’ll start tomorrow. He’ll now get labs every month instead of every three and we’ll see the doc in person every other instead of every four.

As soon as his GFR dips below 20, which could happen in mere weeks or could take a few months, we can start the evaluation process to be approved for transplant. This involves a battery of physical tests for him, plus some social-emotional evaluations for all of us to determine how compliant we’ll be with taking meds, going to appointments, adhering to diet, etc, plus some detailed looks at our insurance coverage and whether we have the financial stability to take care of him. Sounds like it can take up to two months to get him officially recommended and approved for transplant.

At that point, we could begin the process of testing potential donors. Insurance usually covers only one or two at a time (depends on the insurance, apparently) so there will be some narrowing down of best candidates based on the results of Austin’s work-up before anyone actually gets tested. The ideal kidney comes from a living related donor between the ages of 18 and 50, though they especially like someone under 35 when giving to a child. And the outcomes for related versus unrelated donors have narrowed considerably over the years so they’re almost equal (though a kidney from a living donor continues to be superior to a kidney from a deceased donor.)

The first matching question is blood type and, as I’ve mentioned before, Austin’s is AB, the universal recipient (chalk that one up for the win). Then they do a series of six tissue matches, the more that match the better (though increasing immunosuppressant drugs can help with a less than perfect match). The tricky one for Austin will be the cross-matching of his blood because he has likely built up so many antibodies due to the countless blood and platelet transfusions he had during treatment. So we expect that to be a fairly major hurdle.

All in all, none of us is particularly distraught by this news as it is happening exactly the way we’ve always expected it would happen.

Except for that one little thing that none of us ever expected: the coronavirus.

You may also remember that back in the day, our main goal was to get him to the point that when his kidney failed he could go directly to transplant instead of having to do dialysis. (No one can receive a kidney transplant within two years of cancer treatment because the necessary immunosuppressant drugs can cause any lingering cancer cells to grow. Hence, our relief when he was declared two years cancer-free.)

Of course, immunosuppressant drugs can also put one at a markedly increased risk for catching things like, say, a mysterious, untreatable, potentially fatal novel virus should such a virus be ravaging the globe.

You can see where I’m going with this?

Depending on where we are with this pandemic (ha, it’s almost laughable to even type those words because Who. The. Eff. Knows???), his doctor is recommending that he “bridge” with hemodialysis and wait to transplant until there’s a vaccine or a treatment or at the very least until things feel safer. We will still do all of the pre-emptive work as soon as he’s eligible so that a donor can be chosen and ready to go as soon as the magic moment arrives, but the reality is that he could end up with some months of thrice weekly hemodialysis treatments.

While far from ideal — and not at all part of our best laid plans — this is not nearly as terrifying as it was to me when he was a baby. Dr. Dell said that kids do remarkably well and can often still participate in their full physical activities even in the midst of dialysis. So that’s encouraging. And, of course, the fact that he will have numerous options for remote learning during either dialysis or post-transplant is (dare I say it?) very fortunate.

Austin

So, we move one step closer to what we’ve always called “our next big thing” and we wait out Covid-19 alongside the rest of the world and, in the meantime, Austin keeps riding bikes with his friends and playing baseball and going to in-person school (!!) and being a normal teenager in an abnormal time.

And we carry on. Because that’s what we do.

 

My friends, It’s been a minute. Well, more like four years and two months. I always figured I’d return to this site to either announce that my memoir of Austin’s journey was being published or that he needed a kidney transplant. But no, neither of those things is happening.

His kidney still goes strong, remarkably so. We’d always been told he’d likely need a transplant when he reached puberty, as a growth spurt with added muscle mass will cause the kidney to go into overdrive and then peter out. Well, he turned 13 in September and is definitely in puberty (trust me).

IMG_9858-2

We had an appointment with his kidney doc this past Friday and I learned that I’d been reading the most critical measure of his kidney function (estimated GFR) wrong. For years. I was really supposed to be dividing his decreasing eGFR by his increasing height (1.5 more inches and I’ll be the shortest member of my household), and when one does that, his function has remained fairly steady for a while. It has gotten worse, but only ever so slowly.

The initial prognosis remains: he is just on the cusp between Stage 3 renal failure and Stage 4, he will still need a transplant, and that could still come soon (as in “in the next two years”), but that’s a bridge we will cross when we get to it. In the meantime, he is growing, he is strong, he is athletic, he lives a normal 7th grader’s life, and — the thing that matters most — he remains.

And that book, The Wrong Side of the Window? Well, that sits somewhere on my computer waiting for the day when I will pull it out, edit it, and get it published. That day will come, I promise.

In the meantime, I’ve spent the past few years researching and writing another book, which has landed me a fabulous big wig agent in New York, and which is the real reason I’m posting today. One of the problems with nonfiction is that you have to have a “platform” in order to really attract a publisher (which has yet to happen). So, I’m doing all kinds of things to promote myself and my writing, which feels sort of obnoxious but is nonetheless necessary.

Under the Chilean Sky follows the lives of three Chileans who come of age during the heady years of Salvador Allende’s presidency, get caught up in Pinochet’s web of brutality and oppression following the military coup of September 11, 1973, and eventually end up in Cleveland Heights as political refugees.

636e8685-

You may have heard a thing or two about the current unrest in Chile, which I have written about here and here. I am hoping to use the knowledge I’ve gained over the past few years to establish myself as some sort of an expert in this very complicated nation. But I need your help! I’ve been posting on Medium and my work has been recognized by the editors as being of high quality. But the only way to really get it in front of readers (who I don’t already know) is to have more readers (especially those I do know, like you!) read it, comment on it, clap for it (Medium’s equivalent of “liking”), and share it. I especially need you to follow me on the site (which I think means joining, which I’m almost positive you can do for free). My profile is here.

Medium is actually a fascinating site, filled with really good articles you wouldn’t find elsewhere. One cool feature is that readers can comment within an article (instead of waiting until the end) by hovering over a paragraph and clicking on the + symbol. This allows for a real dialogue on a specific section. I promise I’ll respond if you comment or ask a question!

I’ll also be launching my author’s website soon at http://www.krissydietrichgallagher.com where I’ll post upcoming events and other important news as it becomes available. I’ve been accepted to teach a special studies course at the Chautauqua Institution this summer entitled “Chile: From Democracy to Dictatorship and Back Again.” I don’t know which week yet, but I’d love to see your faces in my classroom!

I’m gonna have to be obnoxiously self-promoting over the course of the next year (follow me on Twitter @KCDGallagher), which I am not looking forward to. But I believe this story needs to be out in the world, we need to know what happened in Chile to real people with real hopes and dreams and fears and families, and we need to know the U.S.’s role in it.

This is a forgotten corner of history. And I want to uncover it.

It all started on a swelteringly hot Monday in July. Almost eight years ago. Our boys were 3 1/2 and ten months old. We lived in a different house. We were different people.

Because it changed everything.

In ways large and small, obvious and subtle, it shifted and molded each of the four of us into the people we are today. We will never ever know what our lives might have been, who our boys may have become, what paths we would have pursued had we not been sidetracked by childhood cancer. Sidetracked…? No, that doesn’t come close to describing what it did to our lives. Waylaid. Ambushed. Flipped over, thrown around, and knocked senseless.

Here’s the tally of physical scars: Thirteen visible on his body, some small, some medium, one enormous. One and a half kidneys gone. Twelve rounds of radiation. Fourteen months of chemo. Countless blood and platelet transfusions. One Broviac line, one PICC line, one Mediport. Temporary dialysis. More medications than I can name, some oral, some intravenous, some subcutaneous. An ileus…or two. MRSA and C-diff, at the same time. If much of this sounds foreign to you, consider yourself lucky.

Actually, I consider myself lucky. In every way that we were outrageously unlucky, we were equally, unexpectedly, miraculously lucky.

And today, he had his five-year scans. To check out his kidney, liver, lungs and heart. And everything is normal, unchanged, unremarkable. As we sat in the office with his (new) oncologist at the end of our day, she ran through the list of things to worry about moving forward (who doesn’t need a list like that?): Infertility, heart problems, kidney problems, secondary cancers, cognitive issues, hearing loss, and scoliosis. We went through each, one by one, comparing them to the cumulative doses of his six chemo drugs.

And he should be okay.

The cognitive issues and hearing loss would have already occurred, she expects him to remain fertile, his heart is being monitored already. Secondary cancers would reveal themselves through his regular lab work, but he is well below the level of chemo considered dangerous in that regard. There are no guarantees — and some items on that list (ahem, kidney problems) are not potential late effects of cancer treatment that we worry about, because they are instead obvious and definite parts of his everyday life that we worry about. He still has stage three renal failure. He will still most likely need a transplant.

But what he does not need, ever again, is to be scanned for Wilms tumor. He does not need annual or even biennial checks of his liver or lungs or kidney. Whatever comes his way — and stuff will come — it won’t be kidney cancer. That dragon has been slayed.

By this guy:

FullSizeRender(21)

My apologies to the other moms whose sons may come home begging for a mohawk tomorrow,

but we were in no mood to say no.FullSizeRender(22)

Some of you may have seen this yesterday when I posted it on Facebook, but it’s worth a click to enlarge:

10634091_10150504765199978_1803339411040637806_o

It provides us all with some fairly good reasoning for why we need to fund pediatric cancer research. Not that many of us actually needed that reasoning, but there it is.

But you know that part on the graph: “Well, survival is a relative term,”  where it lays out the percentage of survivors living with severe and life-threatening health problems? Yeah. That.

Austin had an appointment with his kidney doctor yesterday, and, well, it’s not doing so great. I mean, it’s still doing. Doing whatever it needs to do every second of every day, despite being a quarter the size of its average kidney peers. But it has gotten noticeably worse since November.

We’re not in panic-mode or anything. This seems to be part of the process. And that’s not just me being super blase about everything; it’s true. His doctor is hopeful that with extra hydration and a shift in medications, we could see a dramatic turnaround. So Austin now has special permission to have a water bottle at his desk and to bring it along with him anywhere he goes. Of course, the last thing Austin ever wants is special permission to do anything that’s in any way different from what his classmates are doing. But who knows, maybe water bottles will become all the rage for second graders from now on.

Here are the details: His creatinine, that number we watched so carefully throughout the spring and summer of 2010, has shifted upwards in a way that concerns all of us. His estimated GFR (another number we watched so carefully in the spring and summer of 2010) is now 38. When/if it hits 30, he’ll be in Stage 4 kidney failure instead of his current Stage 3. His doctor, who is calm and collected beyond all measure, has assured me that he could hover at any one of these numbers for years on end. So his creatinine might decrease to 35 but then just sit there for three years, before decreasing again to 32. It’s not until it reaches 25 or below that we would start to test potential donors. And not until 20 or even 15 that he would need to start dialysis. So we have time.

She did say that her number one indicator of where someone sits on the continuum of kidney function is how they look, feel and act. And since Austin was doing his usual zoom across the room on her spinning doctor’s chair when she walked in the door, she feels pretty confident that he’s fine. I watch him every day and would whole-heartedly agree.

But as we edge ever closer to the five-years cancer-free mark, we know that we are never truly free of cancer. Its shadow will follow him, and all of us, for the rest of our days.

And now, as I return from a PTA meeting to edit and publish this post, I find myself under yet another dark shadow cast by cancer. The father of one of our past shavees, and a shavee himself last year, died Monday morning from a brain tumor. Unexpectedly. Despite, you know, the brain tumor. He was laughing yesterday morning. Mere minutes before he felt dizzy, laid down, and then was gone. Laughing and talking with the nurses in the extended care facility where he was recuperating from brain surgery before returning home to his wife and three kids. And then he was gone.

And now this woman, who is lovely and upbeat and always willing to help others, is without her partner, forever more. And her children, who were so so lucky to have known him, are without their father. They really thought he might die about three years ago and I believe, from the people who know them better than I do and from the wife’s own writing, that they lived each day to its fullest and never took anything for granted. But still. . .  Still.

And still, they move on. Two of this man’s sons would like to shave this Sunday in his honor. I am currently revamping the day’s schedule to fit them and their peers in before the 2pm funeral. And it is my deep honor to do so.

But you know what? Fuck cancer. And all of its shadows.

Last Friday afternoon, following our long day of doctors’ appointments, I posted a no-explanations-needed Facebook status that simply said, “Three-and-a-half years.” I know it didn’t need any explanation because I immediately got numerous likes and congratulatory comments.

This is all wonderful and we are pretty happy with the fact that Austin is indeed three-and-a-half years cancer-free, but of course, there are many many explanations needed. Because nothing in the cancer world is ever that cut and dry.

First of all, his heart, one of several oh-so-complicated organs for my sweet Austin. You may remember that this entire cancer journey started six-plus years ago with a visit to a pediatric cardiologist to look at a small VSD that had been found at his nine-month Well Visit. That VSD (a tiny and common hole in the wall of one of the chambers of the heart) still exists but poses no threat or consequence to his health at all. He has, however, had a history of enlargement of various parts of the heart, most notably his left ventricle. The measurements (as determined by ECHO and EKG) seem to fall in and out of the “normal range” depending on his overall size and age, and have been considered normal for some time now. But this past Friday, the dilation of that ventricle was larger than what doctors call normal. And there was another portion of the heart that was fused together. I know this sounds like a lot of mumbo-jumbo (to me too, especially when the report says things like, “Possible partial fusion of the right non-coronary commissure”), but the most important finding is that his heart is functioning perfectly. There is absolutely nothing wrong with the way it works, despite the fact that there are several things wrong with the way it looks.

The cardiologist wants to see us back in six months instead of the usual 12 as she wonders if the fact that last year’s heart exams were done at Rainbow and these at the Clinic may account for what appears to be growth. She also wants us to see genetics, which we haven’t done since Week One back in August 2007. At that point, in the days immediately following Austin’s diagnosis, he was tested for a particular chromosome that is associated with one (very dangerous) type of Wilms tumor. When that was ruled out, we never saw genetics again. The current cardiologist is confident that we don’t need to treat his heart in any way at this point in time, but is mindful that we may someday have to. She would like as much information as possible at that time, especially since his various abnormalities are not easily explained. Chronic high blood pressure can lead to an enlarged heart, but his blood pressure has been tightly controlled for years now. That coupled with renal failure, the late-effects of chemotherapy, and what others have referred to as “Austin’s unique anatomy” could make for an interesting future indeed.  So, off to genetics we’ll go, in the next month or two.

The other explanations needed regard his kidney (speaking of oh-so-complicated organs). His function is indeed slowly (very slowly) deteriorating. The changes are minor and not unexpected and not causing any one any great alarm. His lab results over the summer led to our adding two new drugs to his current regimen, so he now takes three in the morning and four at bedtime. He also suffers from chronic anemia, although you would certainly never know. Again, as with his heart, these are problems we see on paper that are not at all evident in the child himself. One of the docs on Friday asked if he could keep up with other kids his age. Ha! The real question is, can they keep up with him?

So anyway, his oncologist would like him to repeat labs in a month’s time, just to ensure that his counts remain steady. There is really nothing big to worry about at the moment, any more than we would worry on any regular day. We know his long-term health is going to be anything but straightforward, we know the risks of kidney failure, heart disease, secondary cancers. We know that this journey will never be over. But the news from Friday was ultimately good. Austin’s kidney is still working. His heart is pumping along. And there is no evidence of cancer in his body.

Like Austin himself, who finds joy in the most unlikely places, we take what we can get.

922458_10152333657601679_1388182113_o1397393_10152333671846679_795858904_o

Because the tagline of my blog does not read, “Krissy Dietrich Gallagher’s blog about life, luck, love, parenting, writing, and, of course, school funding,” life does indeed go on outside of local election cycles. Austin had an abdominal ultrasound at Rainbow yesterday, part of our we’ll-pay-anything-to-have-him-scanned-by-the-one-doctor-who-knows-what-his-crazy-kidney-looks-like and his first of five tests in the coming week. Next Friday, he’ll go to the Clinic for an ECHO, EKG, chest CT and labwork plus a physical with his new oncologist. Unfortunately, I scheduled those appointments long before I knew the boys had that day off school, earning me serious Bad Mommy points. A trip to SkyZone immediately following should keep me in good standing though.

Yesterday’s results came back clear, unchanged since last May, the first hurdle cleared on our path to the title of 3 1/2 years cancer-free. Our radiologist did recommend planning another MRI at some point, but he said there’s no rush and it could be done at the 5-year mark. It’s been a while since we had the absolute certainty of such high quality imaging, back with that unforgettable scan in May 2012. Ultrasound imaging is acceptable but nowhere near as precise as MRI, so we’ll discuss that with our doc next week.

I snapped this picture of Austin yesterday in the waiting room, as I marveled at how much he’s grown since we first carried him into that space in an infant car seat.

photo(307)

This was the first time he could read the Scrabble tiles outside the waiting room doors, connecting words like head, neck, legs, and toe to Pediatric Radiology (what, no kidney?). And there he sat, reading a book all by himself. His feet still don’t touch the floor, so that may be the next milestone he hits in that all-too-familiar space. And someday, he’ll drive himself down to the hospital and maneuver into a parking spot as a tall, strapping teenager. I’ll accompany him, probably against his will, and he’ll no longer climb into my lap in between procedures, but will be much more concerned with where to access the hospital wi-fi.

And while all of that makes me feel sad, his growing up sure beats any alternative.

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.

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.

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 Starting Kindergarten After Battling Childhood Cancer

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.

 

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?

 

 

August 2020
M T W T F S S
 12
3456789
10111213141516
17181920212223
24252627282930
31  

Archives

August 2020
M T W T F S S
 12
3456789
10111213141516
17181920212223
24252627282930
31