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So, I should probably expand a bit on last week’s ultrasound posting. It is indeed slightly premature for me to declare that Austin is three years cancer-free when we have yet to see his new oncologist (who we met for the first time in February) or to receive an all-clear regarding his lungs. All of that will happen at the end of next week, when we visit the Clinic for labs and a chest x-ray. But, since his lungs have always been far down on the list of things we worry about and since the abdominal ultrasound is what has revealed anything and everything suspicious or dangerous over the past four years, we nonetheless feel pretty darn good with last week’s news.
It’s funny how this one crept up on us. This three-year mark. So unlike last year’s anniversary, for which there was so much anticipation and excitement, all of it dashed with that horrible May 7 appointment. And then we plunged into that surreal in-between world, filled with only fear and dread but no answers or action. I do much better when there’s action. When I can see the mountain in front of me, even if it’s absurdly steep, I’m able to gear up, draw upon my strength and plan out exactly how I’ll scale it. But when it’s only fog I see, only vague warnings about a pending cliff or a jagged slope with nothing concrete or real, then I’m paralyzed. Last May, I felt paralyzed. Terrified beyond anything in memory (and there’s been much terror to remember). I had no idea what we were facing, couldn’t even begin to plan our attack — but I felt certain something was out there. Something deadly was lurking there in the fog, waiting for us to pass, waiting for him. And I was paralyzed.
Of course, it all passed as nothing. Those sixteen days a mere post-script to our crazy story. And I find myself back again, in the very same place I was when I wrote this on May 6 of last year, the night before his faulty “something” scan.
And I’ll say it again, with a slight edit to the number: Come what may, it’s been a damn good three years.
One thing I forgot to mention in my last St Baldrick’s post is that I am indeed adding a Bobs for Baldrick’s station to this year’s event. Any girls (or boys) or moms (or dads) who wish to cut and donate their hair for wigs can sign up as a “volunteer” on the St. Baldrick’s site (our event page is here) and then raise money much as the other shavees do. Instead of going under the buzzer, these participants will get a beautiful haircut by either Shawn Paul or Laura Griffith of the Shawn Paul Salon, if donating at least 8 inches of hair. There are four organizations to donate the hair to: Locks of Love, the best known of these organizations, will accept 10 inches of hair, which is more realistic than Wigs for Kids, which requires 12 inches. However (and this is a pretty big however), Locks of Love only makes wigs for children, teens and young adults with long term hair loss. Now, that hair loss could be due to radiation for brain tumors, but is mostly caused by alopecia or scalp burns. A worthy cause, no doubt, but this does not include the kids with cancer that St. Baldrick’s is dedicated to keeping alive. Wigs for Kids does make wigs for children with temporary hair loss due to chemotherapy (but again, they need 12 inches). There’s another group, Pantene Beautiful Lengths, run by the shampoo company, that accepts just 8 inches of hair to make wigs for cancer patients, but from what I gather it’s mostly for grown women. And I just found another group, Wigs 4 Kids in conjunction with the Children’s Leukemia Foundation that will take ten inches of hair. Either way, I’ll have envelopes and forms ready to go for all three and people can choose the day of depending on how long their hair is and how much they’re willing to cut off.
Please consider this option if your hair is long enough but you’re not willing to shave it all off. You’d still be making an enormous statement, helping children with cancer in a tangible way and raising additional research funds in the process. Let me know if you want more information about how this will all work; there are lots of little details like that hair can’t be colored and must be clean and dry, etc etc.
And again, if you’re planning to shave, please register today. I hate to be nagging and pleading, but I need to send in my t-shirt and event supply order by this Friday and I can name twenty kids off the top of my head who’ve told me they’re shaving but aren’t yet registered. It only takes a few minutes and you’ll help put my mind at ease! But don’t do it for me. Do it for Jordan. Do it for Justin, who really really needs us. Do it for the nearly 400,000 children in the US battling cancer right now. You won’t regret it.
JORDAN’S STORY: When he was 16, Jordan was diagnosed with a very aggressive soft-tissue sarcoma. The doctor said, “We have your diagnosis. It’s alveolar rhabdomyosarcoma, and you will most likely not survive.” Jordan responded with strength and a sense of calm. He was the very definition of grace, courage and strength. After 23 months of treatment, Jordan passed away five days before his 18th birthday.
During treatment, Jordan found inspiration in the words of Atticus Finch in To Kill a Mockingbird: Courage is when … “you’re licked before you begin but you begin anyway and you see it through no matter what.” Jordan’s ability to accept his fate, yet continue to live his life with passion, hope, and unrestrained joy was astounding and courageous.
Read more of Jordan’s story.
Jordan is one of five St. Baldrick’s Foundation Ambassadors, representing the thousands of kids touched by cancer each year. Learn about how you can get involved to help children with cancer, just like Jordan.
Twenty days from right now, I will be surrounded by bald children. And I hope that you will be too.
Our St. Baldrick’s head-shaving event for kids and teens (and adults) is fast approaching, now less than three weeks away. We currently have 31 registered shavees, which isn’t awful but I know there are many many more out there who’ve said they plan to sign up. Now is the time, people! If you need to be re-inspired, go back and look at these posts from last year’s event: Noble, which talks about the bravery of the Fairfax students: Heroes, short and sweet, but gets me every time (and I wrote the darn post); Thank You filled with pictures from our event; and The Petri Dish, with more pictures and the very important message that every single dollar raised makes a difference to children living with cancer and their families. I also urge you to spend three minutes and watch this video put together by St Baldrick’s.
And then, right when you’re feeling sufficiently emotional, visit our event site to sign up or donate. Braedan’s page can be found here, and I must tell you that this boy loves his hair. He wills it to grow the second he’s done shaving and isn’t satisfied until about six months later, when it starts to skim his eyebrows again. He really loves it long. So much so that I told him he didn’t need to shave this year if he didn’t want to. But oh no, he said then his friends would be less likely to shave and he wants everyone to do it so he will too. He is now motivated by the prospect of earning his knighthood by the time he’s in 6th grade, as shavees who’ve been involved for seven years are welcomed ceremoniously into the Knights of the Bald Table.
And then there’s Austin, who cares little about how he looks. His message is linked here and copied below because it’s a good one (what a little writer that 6-year old is, huh??):
Numbers, numbers, numbers . . . here are my numbers: I’m 6 years old; I’ve had cancer twice; this is my third year as a St. Baldrick’s shavee; I’ve had six abdominal surgeries, 13 months of chemo and 12 rounds of radiation; I have half of one kidney; I am a two-time cancer survivor and I am two-and-a-half years CANCER-FREE.
More numbers: Last year, I was one of 5 St. Baldrick’s Ambassador Kids and helped the organization raise more than $33 million. I was joined at the Cleveland Heights head-shaving event by 48 other shavees, including 9 kids from my preschool and 11 from what is now my elementary school. Altogether, we raised over $38,000.
This year, I ask you to consider these numbers: 38 children are diagnosed with cancer every day, 46 if you count teens and young adults. One in five of them won’t survive.
So join me. Shave your head, donate your time, contribute some money. Let’s solve this.
As I said in my email appeal for donations, I sometimes feel selfish for asking so often for others to support our causes. But then I remember that this is not about us, this is not about Austin, as he will hopefully never need to benefit from the medical advances that St Baldrick’s funds today. This is about who comes next. This is for the kid who’s diagnosed today and the one who’s diagnosed tomorrow. This is for their siblings. And this is for their parents.
So join us. Shave your head, donate your time, contribute some money. Let’s solve this.
Whatever you celebrate, wherever you are . . . be a light in the darkness.
From a recent post I wrote for St. Baldrick’s:
Lighting the Darkness
By Krissy Dietrich Gallagher, mother to Austin, 2012 Ambassador Kid
My grandfather died on December 21, 1982. The shortest – and darkest — day of the year. Cancer, of course. My brothers and I drove with our dad from Cleveland to Massachusetts for the funeral, where my mom had been for the previous week. It was the first time we’d ever not spent Christmas tin our own home, where my grandparents usually came to stay with us. After the funeral service on Christmas Eve, my grandmother went to lie down and my brothers and I ended up in her basement, one of our favorite places in her house (we’d spent many vacations roller skating around and around on that smooth concrete floor). But this time we searched through her neatly stacked boxes until we found some labeled “Christmas.” We quietly lugged everything upstairs and by the time my grandmother awoke from her nap, we had decorated a small fake tree in the living room and hung stockings over the fireplace. Just because our Grampy was gone didn’t mean we had to give up Christmas.
She talked about that day until she died, a physically broken but emotionally whole old lady, more than twenty years later.
To me, the holidays are about finding the light in the darkness. Placing candles in the window to light the way for those outside on these short winter days. Bringing the evergreen tree inside when all else is bare, to remind ourselves that life is still out there, that spring will eventually come.
When your child has cancer, the light and the dark, the circle and the cycle of life, feel ever more important. Everything is suddenly meaningful; little things like eating dinner as a family and big things like spending Christmas at home. When my Austin relapsed at age 3 in December 2009, the dark days were upon us in more ways than one.
Relapse is scary. Scarier than the first time, for us, at least. It means that that whole army you employed, the full-on assault you launched on your child’s small body, simply wasn’t enough. It means that cancer was stronger than the strongest medicines. And that is terrifying.
But you do it again. You load a fake Christmas tree into the car and you decorate every inch of that hospital room with anything sparkly and shiny you can find. You light the darkness because there is simply no other way. You hold on to hope and you force yourself to remember that spring will come.
Even on the darkest days.
We actually went home that year, a few days before Christmas, and returned to the hospital for chemo and radiation shortly after. But we spent Christmas Eve surrounded by family and friends and we celebrated all that we had, with full hearts. We awoke in our own home, a family of four, to open presents in front of the fireplace, to snuggle and laugh and take lots and lots of pictures. Never far from our minds was the thought, that fear that is impossible for the parents of the sick to shake, that this might be the last Christmas we would spend together.
And now, here we are, three years later, a family of four, alive, intact, together. Two little boys quickly morphing into big boys. Healthy and happy and pretty darn close to normal. Lighting the darkness is their own special ways each and every day.
Ah, fall, my favorite time of year. It still feels like summer, of course (and still is summer, of course), but I do so love September. Fires in the backyard on cool weekend evenings, high school football games, and Childhood Cancer Awareness Month.
Yeah, it may not get the attention that October does, with pink ribbons exploding out of storefronts and tiny percentages of your lipstick purchase going to breast cancer research, but it is just as necessary and just as deserving of public notice.
I’m not going to drown you in all the stats (at least not today), but I will tell you what my family will be doing this month.
This afternoon, as soon as I pick up the boys from school (and show off my new haircut — pics to follow), we’ll drive out to Avon to give a talk at a golf event, raising funds for Rainbow Babies & Children’s. Tomorrow evening, we’ll tune in to the live televised Stand Up To Cancer fundraiser, an every-other-year favorite for us. I recently received an email that said that a photo I submitted of Austin might (key word, there: might) be used during the show. So tune in to ANY of the major networks on Friday and keep your eyes peeled.
I am also currently trying to get the Cleveland Heights University Heights schools to adopt St. Baldrick’s as their district-wide charity. I have pretty strong feelings about teaching kids the value of actual giving — as opposed to just bribing them with prizes and incentives, like the current Pasta for Pennies fundraiser does. But I’ll save that tirade for another day.
And on Saturday, September 29, our family will be walking — hopefully alongside many of YOU — in Northeast Ohio’s CureSearch Walk. Team Austin is still preeeeeeeeetty small, but I know a few people who could change that.
And if you ever wonder why this is all necessary, take a look at this image, posted recently on St Baldrick’s Facebook page, under the heading Why fight cancer?
This child’s road to kindergarten has been littered with eight-hour surgeries and the side effects of chemotherapy. More CT scans in two years than the recommended allowance for an entire childhood. Central lines and blood pressure medications fit for a retiree.
But despite the bumps in the road, the twists and turns and inevitable hills, the outrageous and unexpected detours, this child has reached his destination. The child has, against all odds, started kindergarten:
And it was surprisingly smooth. I’ve gotta admit that for the past few years, this day has loomed large in front of me. If I were a stage actor and needed to make myself cry, all I would have to do is imagine walking out of that building on the first day of school and the tears would start rolling. Honestly, I’ve cried about it many times already as I lie in bed at night just thinking about it. But today was different. We walked, the four of us together, the boys’ backpacks bulging with tissue boxes and Chlorox wipes. Then there was the chaos at school of students and parents trying to find their new teachers before the flag raising. I had one quick moment when a friend asked how I was and I got choked up, before anything significant had even happened. But I hid behind my sunglasses, not wanting to make Austin any more nervous than he was already was.
Into the building we went, down the hallway hand in hand. I left him in his classroom to join the parents for paperwork and Q&A. And that was another moment; I had to go into an empty classroom first and gather myself, right on the verge of a full-blown sob fest. But that too passed, as I was swept up in the mundane tasks of listing emergency contacts and ordering gym shirts. Then another goodbye, this one harder for him than me (but no tears). And that was it. I walked out chatting with parents and friends and headed down the street to my quiet house.
I did it. We did it. He did it. Austin is alive and well, as healthy and normal-looking as any child in that building. He is something we were never sure he’d be: a kindergartener. And next year, he’ll be a first grader. And then second and third. Before I know it, he’ll be a middle schooler. And he’ll graduate from high school and he’ll go on to college.
Because he is alive. And he is well.
He did it.
What I really wish I had said out loud to all of you on Saturday night and what I have felt in my heart since Austin’s first diagnosis with cancer, five years ago yesterday:
On July 30, 2007, our near-perfect world was flipped on its head with the discovery of five tumors on the kidneys of our ten-month-old Austin. There are so many analogies we’ve used to describe our long and complicated journey with pediatric cancer; the first was that we felt as if we’d been plunged into a foreign land, complete with its own language and customs, its own definitions of “normal” and “okay,” its own hierarchy of authority. A world that we never intended to visit and a world from which we had no clear way out. We’ve also used the battle analogy, a common one for cancer patients, best described here in Fighting Words.
But my favorite and the one most fitting to my life is the marathon analogy. Mark and I, and Braedan and Austin, were forced to run a marathon for which we had not trained. In fact, we had no intention of running anything at all until the very moment we found ourselves standing at the starting line. And this was no ordinary marathon; this one followed no accepted and enforced rules. The course was changed on us numerous times — we’d come around a corner, usually after a particularly grueling hill, and we’d expect to see a finish line or at least a halfway mark, but nooooo, it had all been moved. Some evil race organizer had switched the mile markers and moved the finish line, over and over again. We never knew when to conserve energy or when to kick it in high gear. We never knew how much more we’d have to take and how horrible it would be.
Every time I’ve run a marathon, I’ve put my name on my shirt. This is a very strategic and effective move: I want people to cheer for me. No, more than that, I need people to cheer for me. When my legs get tired and I wonder how on earth I’ll be able to run one more step, let alone nine more miles, I need to hear some stranger on the sidelines call out my name, “Go Krissy! You can do it, Krissy!” And I do. That one cheer makes me pick up my pace, I hold my head higher and I keep on keeping on.
I put Austin’s cancer on my shirt. Every day, on the Carepage and then the blog, I wore it emblazoned across my chest, for all the world to see: this is what’s happening, this is what we fear, this is what we need, this is what we hope. I did it not because I wanted you all to cheer for us, but because I needed you to. I needed you to know what we were going through each step of the way so you could go along with us. And go along, you did. You cheered wildly when things were good, you pushed us along when things were rough. You held us up when we thought we’d fall over, you helped us choose our way when the course pointed in two completely different but equally terrifying directions. You even offered to run parts for us. You said, “Here, rest, just for a moment, just for a mile. Let me hold this burden for you.” The rules don’t allow that sort of thing, in running or in cancer, so instead you ran along beside us. And when we couldn’t possibly fathom taking one more step, you told us we could, and we did. You told us we were strong and that made us strong. You told us we would make it and look, . . . we made it. We crossed the finish line, with arms held high in victory. This race is finally, finally over. There may be another race in our future, but we hope to be better prepared for that one. And no matter what, we know you’ll be there cheering yet again.
We made it. And you were there every step of the way. And for that, we thank you.
Here we go again. There’s something about having a procedure postponed that takes away a bit of the nervousness surrounding it and replaces it with a feeling of let’s do this already. It happened to us back in September/October of 2007 when Austin went in for a major surgery to remove tumors off his left kidney and we were all so worried, but after they put him under and opened him up, they discovered an infection inside him and delayed the whole thing by a week. By the time that long in-patient week had passed, we had forgotten much of what scared us about that risky surgery and just wanted to get it over and done with.
So, I think that’s how we feel about today’s MRI. Let’s do this. Give us some information already, point out the path ahead.
Just in case you felt stupid after reading last week’s post about anesthesia versus sedation, know that I had to google the official difference between the two. I should know, because Austin’s done both many times over, but when I tried to explain it to anyone I realized I couldn’t do it accurately. All I could have told you for sure was that anesthesia takes place in Peed Surge (pediatric surgery) on the 2nd floor and sedation takes place on the 4th floor in the let’s-be-very-clear-here Sedation Unit. I do know that Austin has more trouble coming out of anesthesia than he does coming out of sedation. After being sedated, he usually feels groggy and disoriented for about five minutes. With anesthesia, that grogginess and the nausea that accompanies it, can last for an hour or more.
He will also have a breathing tube inserted as is common practice with anesthesia. This is the crux of why they’ve opted for this route over sedation. With both, your airway can partially collapse, which caused the worry over Austin’s breathing last week. Being intubated will obviously take care of that worry (and give him a very sore throat afterwards). So, needless to say, we’re in for a long day today.
But not quite as long as it was going to be. He was originally scheduled to begin at 2:30, after going on his field trip, which his class happily changed to a popsicle-and-jello-only event. But just yesterday, I got the call that we should now arrive at 10:30 (you should’ve seen my face as I was listening to my doctor’s message that started with the words, “Austin’s MRI has been rescheduled again…”). So I’ll shortly be waking the boys for an above-mentioned healthy breakfast (yes, they’ll both be eating popsicles and jello for breakfast) which must be safely consumed before 8am. Then Austin will head off to the playground for one hour, with no food or drink in sight, before Mark and I bring him down.
And then, well, then it will be a long day of waiting, I’m sure. I’ll be bringing a laptop to type more stories from the Fairfax students, which is what I’ve been doing nonstop for the past few days. Sixteen volunteers came to the Typing Party on Monday night at Lake Erie Ink and we plowed through at least half in three hours. But that leaves an enormous half stacked here on my couch, which I’ve been foisting on innocent bystanders who are too guilty to say no to me.
And hopefully, some answers. Please go back here to remember exactly what to wish for. Being in a state of limbo has been, as you might imagine, exhausting. But I stand by the fact that if the news is bad, I’d rather it be delayed as long as possible. I mean, think about what limbo actually means: you’re stuck between heaven and hell, not sure yet which one you’ll be condemned to for eternity. I’ll take limbo over being condemned to hell, that’s for sure.
But if the news is good, bring it. I’m ready for that.
Austin has fully embraced our fill-every-moment attitude. The other day when we were bouncing on the trampoline, he shouted from mid-air, “Let’s have the most fun ever!” And then proceeded to berate me if I wasn’t laughing loud enough. “Let’s laugh, Mom … you too, Braedan! You’re not laughing enough,” like the drill seargent of joy.
On Saturday, we took them biking on the Towpath after first riding the Cuyahoga Valley Scenic Railway, as part of their Bike Aboard program. The kids were thrilled, although twelve miles proved to be a bit much for Austin. Luckily Daddy was nearby to lend a hand — literally, reaching out and holding Austin’s hand on every slight uphill. That night at dinner when Mark asked him if he’d liked our surprise adventure on the Towpath, the clever boy replied, “I liked the tow part.”
On the train
Too cool for athletic gear
The it was off to our niece’s princess birthday party, complete with swimming in the pool.
Look at those pipes
We are feeling a bit desperate, like we need to fit in as much summer and swimming and bike rides and, yes, laughter as we can before . . . , well, before. So we’ll head to Chautauqua after this weekend’s baseball games. And we’ll just keep having Austin’s versions of “really much fun” as long as we can.
But I feel beat down, so much more pessimistic than I have in the past. Every other time we were on the verge of cancer, I felt certain it would turn out fine, certain that it wouldn’t end up being cancer after all. And every time, it was. And this time, I feel the opposite; like I don’t see how this could possibly be anything but cancer. But there’s still a tiny glimmer of optimism in that I hope that, since I was wrong in the past, I’m wrong this time too. That maybe my instincts just suck and whatever my gut says is way off base. That would be awesome.