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The month of September always gets me. Not only is it Childhood Cancer Awareness Month, with the barrage of images and stories, Facebook updates and fundraising pleas. I wish I’d been more engaged this month, I certainly meant to post regular updates, but that never seems to happen anymore. (Some other parents did it for me though and they did it well and with anger and passion and jaw-dropping statistics: see here and here and here.)
Then there’s the fact that September 2007 was probably the worst and darkest month for us in all of our years of treatment, the calendar dates file past us with bold reminders of things we’d really rather forget. This was date when we realized his tumor was growing, big and fast and with terrifying mystery; this was the date they removed his right kidney, along with that hard to fathom six-and-a-half pound tumor; these were the six days when we waited and waited and waited, pacing the hospital room, searching for signs, for the results that would define our futures; these were the ten days we waited and waited and waited for Austin to be allowed to eat, hiding ice chips from his weakening one-year-old grasp. It’s a virtual landmine of anniversaries.
And then there is today: the sixth anniversary of my second baby boy’s first birthday.
Because today Austin is seven. Against all odds. Seven.
Well, it wasn’t quite the party extravaganza we had last year (I told you I couldn’t beat that one), but Austin did have a very successful Lego Mania bash on Saturday.
We managed to fit in both the Lego relay race (carrying Lego pieces on a spoon from one bowl to another)
and the Lego pinata (filled with Lego candy)
before the rain storm (um, I mean, hail storm) hit halfway through the party.
Then it was twenty rambunctious (and mostly male) schoolchildren running around the house. We corralled them long enough for Lego-shaped crackers and cheese,
and Lego-shaped watermelon with grapes,
and (you guessed it): Lego cake
Then it was gift-opening time and I bet you’ll never guess what he got. Here are some clues:
What ever are we gonna do next year??
Yesterday was indeed another day. And a good one at that.
Started with an early morning Dunkie’s run by Mark (nothing like junk food at 8am to get the kids up and at ’em). Then off to school, with an end-of-Friday visit by Mommy and Braedan, complete with frosted zucchini muffins (not too junky, those) and a read-aloud by big brother to a class of cute and giggling kindergarteners. The whole event was tinged by a bittersweet encounter with a teacher’s aide I knew from my Coventry teaching days, who stopped me in the hallway with a hug and whispered in my ear how fervently she had prayed for this day.
His teacher using a magnifying glass to search for gray hairs.
More Lego gifts in the afternoon (god, I love how those keep them quietly engaged for such long stretches). Then homemade pizzas with the Gallagher clan, more presents and the as-requested key lime pie.
Today, a couple of hours of soccer accompanied by Daddy (so Mommy can finish last-minute party prep and cake decorating), followed by hopefully sunny skies and a gaggle of excited school children eager for Lego mania.
And as I said yesterday on Facebook, not a single day goes by when I am not keenly aware of how lucky I am to have this boy in my life. It’s been a crazy, unexpected, awful, wonderful, unlucky and extremely lucky six years.
Happy 6th Birthday to my sweet love, the one and only Austin Gallagher.
Well, my friends, it’s more than time to celebrate. When Austin first finished cancer treatment way back in the winter of 2008, I remember thinking about having a big party until my mom and I sat down with a list of registered Carepage readers and realized we simply didn’t have enough room for all those people. But now Mark and I have a huge yard with a huge porch and even more to celebrate (as that 2008 party would have obviously been a bit premature).
Austin is not keen on being the center of attention, so we’re wrapping many milestones into this one bash, and … on Saturday, July 28 we are hosting a great, big, long, loud and late party to celebrate all that is right in our lives: Mark is turning 40 in November (if you can count that as something that is “right” in our lives….), our 10th anniversary is in early August, our house projects are pretty much/almost/really close to done and, of course, last but far from least, Austin is two-years cancer-free.
Our fun and fabulous (and tree-friendly) invitation can be found here. Please know that even if you don’t receive an official invitation delivered to your email, you are indeed invited. Yes, all of you. Of course, I have no idea who or how many “all of you” are, but if you’ve ever gone to bed at night with fear and sadness in your heart after reading my updates or with relief and joy in your heart after reading my updates, then I’m talking to you. Leave your computer behind and come celebrate with us in person. But you must let me know that you’re coming! We really need a head count if we’re going to be even the slightest bit prepared. Of course, there are a few of you who may want to plan a surprise visit, but you better really be worth it. No fair “surprising” me with your presence if you live ten minutes away.
And note, Austin’s good health may be at the core of this party, but Austin himself will only be here until about 9pm and then he and Braedan will be shipped off somewhere quieter. In other words, call your babysitters, people, this is a grown-up party.
See you in a few weeks . . .
People always comment on how lousy it is that Braedan’s birthday is Christmas Eve. And granted, it’s not ideal. He has a major crush of celebrations and presents all at once, with nothing to balance it out across the year. It all feels rushed and squeezed in amidst the many many other festivities.
But he loves it and is keenly aware of the reaction he gets from people when they ask him his birthday. He never ever answers “Christmas Eve,” but instead says December 24 and waits for them to go, “Ooohh, wow.”
He is always guaranteed to have large family gatherings take place on his actual birthday every single year. This is great now, at age eight, but I’m sure ten years from now he’d much rather be hanging out with his friends. And good luck finding an open bar on his 21st birthday!
But I am definitely of the mindset that it is better to have a birthday right before a major holiday than right after. I mean, think about today. If you’re anything like me, you were tired and wanted to stay in your pj’s, stuffed from days of overindulging and intent only on separating out the reusable wrapping paper from that bound for the recycling bin. We did a puzzle and played a few rounds of Austin’s new Hungry Hippo and Numbers Zingo. We searched high and low for the right batteries for every new electronic toy. We tried on clothes and made piles of things to keep and things to return. But we certainly were in no mood for parties or cake or guests.
So we’ll take our December 24 child. Not that we have any choice, of course . . . .
We have been buried in the flurry of holiday activities lately. Shopping and wrapping, addressing and mailing, baking and baking and eating and eating. The boys and I baked a holiday breakfast of muffins and breads and fruits to deliver to the Oncology Floor recently. (There was no blizzard-induced walk home after this one, thank goodness.)
That same day, we were entertained by 120 first and second graders singing their hearts out in their production of “Flakes,” a very sweet song and dance concert in which each second grader recited an individual line. Below is the one and only Braedan, whose pretty face is hidden by his snowflake cap. His part came in the middle of a story line about how each snowfake is different, even though, at first glance, they all look alike. The other kids had lines like, “Some are very short and some are very tall, Some have lots of hair, others none at all.” But no line was so perfectly suited to its child actor than Braedan’s:
(Having a little trouble with the technology here — will fix on Monday.)
In case you weren’t able to understand him (even though he was the most understandable of the bunch!), he said, “Some of them are singers, others like to dance. Some would play golf every day if their spouse gave them the chance.” What you don’t get in this video from the afternoon show is the appreciative laughter of the parents at the evening show.
Thursday, we celebrated his birthday at school with mitten cookies, a reading of The Mitten Tree (a truly lovely children’s book if you need a new one) and some mitten measurement. Friday, the parents hosted a second grade brunch in place of a traditional class party since there were two assemblies in the afternoon. We made a zillion pancakes and waffles, with the help of a lot of extension cords, and were thankful that no one brought unasked for candy and cookies.
And today, my Braedan is eight and the real whirlwind of the holidays is upon us.
So, we’re busy and more busy and busier yet. But we do take the time to appreciate what we’re not doing this holiday season: We’re not juggling visits with family around visits to the hospital. We’re not choosing presents that are only appropriate for use in a hospital bed. We’re not frantically canceling family vacations. We’re not dazed and exhausted and wondering how on earth we’ll manage to play this damn cancer game any longer.
We are not sad and afraid and worried. We are not sick.
We are, instead, this:
Happy Everything from all of us to each of you.
I apologize in advance if this one is disturbing for you, but I feel it’s a necessary part of our full story. On Austin’s birthday last week, Mark and I took a moment to look through the photo album that contained images from his first birthday, and to reflect for a minute on just how far we’ve come. As we flipped through a few months’ worth of photos, I realized that those of you who started reading after I launched this blog, but never read the CarePage, missed out on some of the most serious days — and most disturbing images — of his and our lives.
So, here they are, in all their gory (“L” purposefully omitted).
This first one was taken the morning of August 1, 2007, our third day in the hospital. You can see that his belly is a bit distended, but not alarmingly so. This was the last moment his skin was unmarked by scars, as he was preparing to go into his surgical biopsy which left him with two inch-long incisions on either side of his abdomen and a Broviac line in his chest:
Sleeping post-surgery with his mama. It was now confirmed that he did indeed have cancer:
And with Caryl. You can almost see one of the scars under his hand:
And with his Gram. Poor sad baby, he held on to that juice box for dear life:
But after eleven days, we went home and he started to get back to normal. The Broviac line under his shirt is what causes all that lumpiness:
And then things began to change. When he was supposed to be getting better, he instead got worse. Over Labor Day weekend, right after a blast of three chemo drugs, his belly just kept growing. Growing and growing, bigger every day. I literally tied a piece of ribbon around it and measured it on Saturday. It was one centimeter bigger on Sunday. And another on Monday. And by Tuesday, we were back in the hospital:
The next day we learned the truth: the tumor, which at diagnosis was 7 by 7 by 14 centimeters, was now 10 by 15 by 21.
And yet he still tried to smile:
But it wasn’t easy:
And then there are these next ones. Taken on Friday, September 7, 2007, two weeks before Austin’s first birthday and mere minutes before we brought him to the pre-op room for a six-hour surgery that would remove his right kidney and a five-and-a-half pound tumor:
I know, I know. I was there. I saw these images with my own eyes. In my own child. So believe me, I know how bad they are:
And hours and hours later, he was returned to us, nearly six pounds lighter:
And so he was lighter and, we hoped, healthier:
But it was six days before we knew why it had grown so horrifically and a full ten days before he was allowed to eat again. Ten days with no milk, no food, no water, except for the few ice chips I sneaked him one day (which he promptly threw up):
He was a mere shell of the boy I once knew:
Those were the worst days for me. Of my life, I think. But he still managed to smile:
Finally, we got to go home, for five days, where we celebrated his first birthday:
And when those five days were up, we were right back in the hospital, getting ready for another surgery. But this time, Austin’s belly was fat from all that cake:
I know these are sad and I know they’re shocking. But I’m okay with looking at them. In a way, I think it’s good: we should never forget. But that was then.
And this is now:
And we are the luckiest.
Today is a day we weren’t sure we’d ever reach: Austin’s 5th birthday.
And yet, here we are.
I was the parent helper this morning for his preschool class, where we celebrated with frosted zucchini muffins (at Austin’s request) to which one child asked in disbelief, “Are there really cucumbers in here?” And moments later, “Can you take the onions out of my cupcake?” (He did end up eating the whole thing.)
Then we spent hours baking cakes for tomorrow’s party. After school, he and Braedan worked happily with his new Lego set, the two of them side-by-side on the living room floor (getting along!). Then it was out to the yard in the rain with Mark and our carpenter (who might as well be part of the family) attaching a rope ladder to the back of the tree house.
Music has been playing on the radio all day, also at Austin’s request, and after listening to the Juno soundtrack, we danced around to his favorite, the Putamayo World Playground CD. He had wandered away by the time the eleventh song came on, a beautiful rendition of You Are My Sunshine. And I couldn’t help but think back to the days (and weeks and months and years) that I held him in my arms in a hospital room, singing quietly into his ear, trying to soothe him after some particularly painful medical procedure. And that song and those words, “Please don’t take my sunshine away,” reached a fevered pitch in my head and my heart, as I so feared that one day I might have only memories of this dear dear boy.
But here we are. And here he is.
Happy Birthday, sweet Austin.
Well, I think we’ve finally dug out from under the pile of wrapping paper and boxes and excessive toy packaging (how ridiculous are those tie tabs that hold toys to their boxes?). Christmas was another major success for the Gallagher boys. Somehow my attempts at simplicity always fail (much to their relief and delight).
Santa brought new bicycles, Braedan’s outfitted with a speedometer.
Austin’s is small enough he’s able to maneuver it around the house, so he’s been pedaling away, lap after lap through the kitchen and living room. I’m not quite sure his choice of attire is what Santa had in mind though:
Braedan has to take his outside (clothed), which he somehow convinced me to do on Christmas morning when we rode through the snow to my parents’ house. Not great cycling weather but we managed (and even went “12.6 miles per hour!” — I had to keep reminding him to look up every once in a while).
Christmas Eve was lovely, as always, although it is rather difficult to snap a good picture of five sweet grandchildren ranging in age from 9 months to 7 years. We certainly tried though (these are the very best out of at least thirty):
Braedan celebrated his birthday (again), with cake and candles and a few more presents (just what he needed!):
Mark and I got them some fun accessories for the treehouse — a periscope and steering wheel and this cool extension thing for the tube slide so when you come down it in the summertime you land in water. I painted wooden wishing stars to hang inside from the peaked ceiling (I was considerably more excited about them opening these than they were):
Braedan had purchased gifts for the rest of us at the holiday shop set up in his school cafeteria and I’ve never seen him so excited about giving. He carefully wrapped each item, complete with tags and bows, and as they were waiting (im)patiently at the top of the stairs on Christmas morning, he announced that he wanted us to open our gifts first. For Austin, a little red racecar and a light-up key chain (you know, for all his keys), Mark got the obligatory #1 Dad pen and a tool set, and yours truly received “diamond” hoop earrings and a little gold butterfly ring. Which, yes, I wore all that day and several times since. It was all very sweet.
So, all in all, I’d say all our Christmas wishes have come true.
We’ve had a very busy few weeks leading up to this day. Starting with Braedan’s holiday concert. Here he is with two of his buddies after the show:
And during the grand performance:
And Austin discovering the reverse camera option on my phone (during said grand performance):
Then there was the visit with Santa Claus with their cousins:
And the carefully written letters providing evidence of “goodness”:
Then we celebrated Braedan’s birthday at school, with homemade “B” brownies:
Following that, there was the obligatory kid party at Great Lakes Science Center (and fabulous cake made by our old Edgehill neighbors):
This past Monday, my little elves and I drove a full carload of goodies down to Providence House, everything from hand-knitted blankets (thanks Cori) to toys and games (thanks Judi) to boxes and boxes of baby food and diapers and paper towels and bleach (thanks Braedan and Austin).
And now here we are, on this most special day when my sweet Braedan turns seven (we did spend one Christmas in the hospital, after all!). As he ate lunch today, having just noted the minute of his birth (12:46pm), he sighed and said, “Wow, look, we all made it another year.”
Happiest of holidays to you and yours.