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Surely you won’t be too surprised when I tell you who had a fever and was vomiting today?
That’s right: my sweet Brady-Bean, Brado-potato, the Braedanator. (Please, do everything you can to restrain yourself from ever repeating those pet names in his presence or he will disown me.)
Yup, came home yesterday afternoon and crashed on the couch with a mild fever. Woke up in the night to throw up off the side of his bed before falling back to sleep. Of course, this is just an ordinary (and sometimes extraordinary) kid with an ordinary sickness; no trips to the ER for IV fluids this time. He’s very philosophical about the whole thing too, as in, “Mom, isn’t it a good thing I didn’t eat those turkey burgers for dinner because then I’d have so much more inside me to throw up?” (Yes, indeed … good thing.)
He perked up as the afternoon wore on and is now feeling totally fine, but still using the “sick” excuse to sit on the couch glued to iCarly.
Nothing but ordinary over here.
It’s that time of year again … head-shaving time!
Four-time shavee and proud father Mark, two-time shavee and proud brother Braedan …
and … introducing … first-time shavee and proud survivor AUSTIN.
Yes, that’s right, the little guy has asked to join his dad and brother at this year’s event. Not totally sure how I feel about that (we had to work pretty hard to get a headful of hair back on this boy), but they’re all plenty excited.
Mark will be shaving at the adult event on St. Patrick’s Day at AJ Rocco’s downtown following the parade. The boys will shave the following Sunday, March 20, at the Chagrin Falls Township Hall at the more family-friendly event (where they serve cookies and juice instead of green beer). Please consider joining us, either as team members or at least as cheerleaders, on one or both of those days. Both events are moving and lots of fun (albeit in different ways).
And maybe your kids would like to join the team this year? There’s no minimum amount to raise and I think it would be more about the statement they’d be making than the dollars they’d be raising. Although the fabulous St Baldrick’s did raise a whooping $22 million last year for pediatric cancer research.
I’ve explained to my boys that they probably won’t raise as much this year as they did last ($4,460 for Braedan and more than $18,000 for Team Austin) for a few reasons: 1) Austin is no longer in treatment and the sense of urgency that existed last year has (thankfully) diminished. And 2) all their donations this year will have to be divided in half. Yes, divided in half. Please pay attention, you potential donors: Please please please, I beg of you, if you give any amount to one child please give the exact same amount to the other. I don’t care if it’s tiny little bits, five bucks for one kid and five for the other, but just please keep it as even as possible. Braedan was super proud of himself last year for being the top fundraiser on Team Austin and the top fundraiser at the family event, and he’s old enough now to read the lists of donors and amounts on the website, and trust me, he will be keeping score. I thank you in advance for helping me maintain some sense of peace in our household.
Here are their pages for all you generous souls: Mark here, Braedan here and Austin here (they’re all currently listed at the AJ Rocco’s event but I’ll move the little people once the other one is registered).
So, six weeks from now, my little Austin will be bald for the third time in his short life. But this time, for only good reasons.
Braedan brought home his school pictures yesterday: images of a widely grinning boy, standing happily amidst friends and peers who adore and admire him. He has been doing fantastically. I think his struggles in August and September may have just been about adjusting to the start of school, due in part to the strong loyalty he felt for his kindergarten teacher. I now realize he simply wasn’t ready to transfer his allegiance from one teacher to another (not to mention not being ready to end summer and get back into the swing of early mornings and daily homework!).
But things have really settled down and he seems much much happier. He’s still seeing the psychologist at UH every other week and she also thinks he’s doing fine. He’s gotten into “projects” lately — building jumps for his remote control cars out of bricks and planks of wood or cutting paper into strips and weaving together a “rug” for Mark’s birthday present because we don’t have one in our room. And reading! Wow, is he reading. He’s finally jumped that hurdle to the point of fluidity and can get fully immersed in a book without the hesitation required to sound out each individual syllable. The other night I walked into the room where Mark and Austin were snoring on the bed and Breadan was sitting up next to them thoroughly engrossed in a book, whispers of words escaping his constantly moving lips. So I brought my current favorite in with me and plopped down in the rocking chair to read alongside him; the first time we’ve actually read independently side by side . . . but not the last.
So, again, I feel mighty lucky. Two boys who are mostly happy, surprisingly healthy, remarkably normal. What more could I ask for?
You know we’ve become mighty good at seeing the bright side of otherwise dark situations. It’s a survival mechanism, I suppose. So, we’re now looking forward to a “leaf peeping” trip, sometime in October. Still trying to find the perfect set of days, in between class pictures and field trips for the kids, a very unpredictable trial for Mark (as in, the jury should be able to decide this one pretty darn quickly, but common sense doesn’t always prevail. . .), doctors’ appointments, board meetings, and so on and so forth. Combine that with the fact that direct flights from Cleveland to Portland happen maybe once a week (and layovers with kids should be avoided at all costs), and we’re having trouble settling on the exact dates. But we will definitely go on this trip.
We are hoping (silver lining here) that either of our two sets of friends, one in Boston and another in New Hampshire, will be able to visit us during our newly planned getaway. Plus the kids will be more settled in their school routines (and more ready for a break).
Speaking of school, Austin finally started this past week, after a painfully drawn out orientation schedule for pre-schoolers (which I found brilliant Braedan’s first year, but now, in my fifth year as a preschool parent, I’m not so thrilled with). He is doing fabulously, by the way, so much more ready to separate from me this year than he ever was last. He is becoming more independent and talkative by the day, and is in an extremely happy place.
Braedan, too, is doing better. His complaining about school has quieted to the usual murmur, louder at breakfast when he’s still half-asleep and I’m nagging him to finish his breakfast, put on his shoes, get out the door. His teacher, if not exciting, is really quite nice, something he has begrudgingly admitted. He started tennis lessons at school on Tuesday afternoons, which is helping.
He will also meet with the psychologist at Rainbow next week for a one-on-one session. Mark and I met with her last week and we feel very fortunate to 1) have someone so readily available to help and 2) to have such a ready-made reason to seek help. I think most six-and-a-half year olds would benefit from having a grown-up to talk to, to help them learn how to express their emotions in a healthy way, to teach them skills for de-escalating anger or handling disappointment. In fact, I think most people any age would benefit from that. It’s not like they’re gonna sit around and talk about cancer for an hour; that just happens to give us a great excuse to get in the door.
So, all in all, things are fine. We have the wake tonight and funeral tomorrow; the kids will sleep at Mark’s parents since all the services are on the westside. They’re as happy about that as anything else. And Maine still stands, awaiting our arrival. Silver linings abound.
Braedan handled Austin’s first bout with cancer beautifully. He made it through the entire thing unscathed, as if it was just another thing you deal with when you have a little brother. He was remarkably happy, well-adjusted and trusting.
The second time? Not so much.
I’ve been hesitant to write about this because I felt some need to protect him, as if his current struggles are somehow his fault or should be hidden. But they’re not his fault and hiding them certainly doesn’t help.
He is angry and frustrated and anxious and fearful and contrary and argumentative and a little bit lost. Most of all, more than anything, he’s angry. Angry at me and Mark, angry at Austin, angry at the world. The start of school, which I’d been eagerly awaiting because he loved it so much last year, has only made things worse.
I understand where he’s coming from and I completely understand why it’s happening now. It’s classic post-traumatic stress. He worked so hard for so many months keeping it together, being good because we were exhausted, being nice to Austin because he was sick. But he’s not sick anymore and we’re not quite so exhausted anymore and it’s a safe time to let that rage out. And let it out, he does.
Of course, understanding the source of his anger doesn’t make him any easier to live with! So we’ve made an appointment with the pediatric psychologist at Rainbow who works specifically with families, and especially siblings, of children with cancer. I’ve also spoken with his teacher and the social worker at his school, so I remain hopeful that we will find effective ways to work through this.
Cancer casts a long shadow, that I know, and the shadow can darken the lives of more people than just the patient. More than anything, I want my children to be happy. And as hard as we worked to make Austin better, we will work to make Braedan better. It’s his turn.
For months, and now years, we have all sent our wishes to Austin, written on paper, on keyboards and in our hearts. We’ve wished for broad ideas like strength and happiness, health and peace. We’ve wished he’ll reach regular childhood milestones like going to kindergarten and learning to ride a bike. We’ve wished for health-related miracles like “no more cancer” and kidneys that keep filtering. We’ve wished well into the future for finding true love and fishing with his grandchildren.
But until now, we’ve never asked Austin for his own wish. And he has one. It’s not huge, just a typical kid’s wish, one he told me completely unprovoked one day last December as he lay in his hospital bed recovering from surgery: “Mommy, I want to build a treehouse in our new backyard.”
Well, okay, I thought, if ever a child was going to get a treehouse, it would be this one. So a few months ago when we got our Make-A-Wish packet in the mail, I immediately thought of Austin and his dream treehouse.
We hadn’t been eligible for Make-A-Wish his first time through cancer because he was too young. You have to be at least two to ensure that it is indeed the child’s wish that is being fulfilled. (As opposed to, say, a parent like me who might — just might — say something like, “Oh yeah, Austin? He’s always wished to have a playdate with Shiloh Jolie-Pitt. Uh huh, always, lifelong dream. And he really wants to have that playdate at her house, you know, the villa in the South of France? Oh, and he insists that Mommy come along with him so she can hang out with Shiloh’s parents and sip some French wine on the lawn of said villa.”)
Joking aside, we’ve also been uncertain about whether or not we would take advantage of Make-A-Wish at all, seeing as we can afford to build a treehouse ourselves. But Austin’s doctor and especially his nurses convinced us that this is not for poor children but for sick children, and that they will make it into a memorable experience beyond just producing a thing, and that Austin deserves fulfillment of his wish as much as anyone.
So we sent back our papers and met with our Wish coordinators on Monday. They came over with gifts for both boys (of course) so we could fill out paperwork and flesh out some of the details of Austin’s imagined treehouse. Well, you know once they got the boys started on what it should have, they went wild: swings and slides and fire poles and telescopes and Braedan even suggested that it have a really high ceiling so we could fit a trampoline inside it (somehow I don’t think that one’s gonna make the final cut). Then they asked what it should look like and they started out simple — Austin likes red — but suddenly moved into interesting shapes like maybe it should be a t-rex or a pirate ship or a rocket ship or even an airplane that crashed and got stuck in a tree!
We’ll see what the team of volunteers comes up with but so far the boys are thrilled with the very idea of it, and Make-A-Wish has already achieved its purpose of making them feel special and happy, and giving them something to be excited about outside of hospitals and doctors and sickness. Which is, after all, what we all wish for them.
He needed platelets again yesterday. And again today.
His body just can’t keep hold of them. I don’t really understand the science behind it but something about his antigens “chewing them up.” Yesterday was actually our “quick” day as it lasted only four-and-a-half hours and we were out in time to pick up Braedan. Today took longer because about thirty minutes after his transfusion, he broke out in hives. An allergic reaction to some of the antibodies in his donor platelets, not terribly uncommon but concerning nonetheless. So, a quick dose of Benadryl through his line and a sudden nap and we were released shortly after 5.
Braedan is so completely easy-going that he is thrilled with whomever picks him up from school, however unexpected, and he had a great afternoon jumping on the trampoline of our friends. That definitely makes things easier. Plus the fact that everyone seems to enjoy having him over — he’s not one of those kids whose favorite activity is “dumping” (you know, dumping containers of toys onto the floor but never playing with any of them). He’s endlessly chatty and adores grown-ups, so I don’t feel too guilty for foisting him on people at the last minute.
We’re due back in the clinic in the morning and expect to have to go in over the weekend too for at least blood counts if not transfusions, which means briefly checking into the in-patient floor since the clinic is closed.
Nothing brilliant to say right now except I. Am. Tired.
Isn’t there a movie where some guy says with a funny accent, “For you, dahling, never a quickie. Always a longie”? That’s sort of how my life feels and I’m not talking dirty here.
I brought Braedan along for Austin’s “quick” lab work yesterday, thinking we’d be in and out in an hour and still have time for a last-day-of-Spring-Break playground visit. We arrived in the clinic at 1 . . . and Mark finally met us at 6:30 so I could take Braedan home for dinner. After another switch-over two hours later so I could spend the night, Austin was released from the hospital at 2:30 this afternoon. How’s that for a quickie?
He needed platelets, again, even though he’d gotten them on Friday. And then needed a Doppler ultrasound to check the blood flow through his arms and fingers because his hands looked purple. And then we couldn’t get his blood pressure to drop to its already elevated “normal” range. . . and because the combination of low platelets and high blood pressure can cause bleeding in his brain, we were admitted. We did eventually use enough medications that his blood pressure lowered around 10 and then we were simply “observed” through morning, at which point he needed another platelet transfusion. Huh.
The two boys were not at all fazed by their hospital day though as yesterday they tore around the halls and played games that involved lots of squealing. So it was mostly okay. But of course, everyone’s patience was tested after all those hours and when Braedan started listing in a whiny voice the food he was planning to eat for dinner in the hospital cafeteria, including Austin’s favorite forbidden fruits corn dogs and yogurt, my protective motherly instincts kicked into gear and none of those instincts were aimed at protecting Braedan. I let loose a vicious string of attacks at him, including the words “torturous” and “cruel.” I think maybe steam was coming out of my ears.
Not my best moment. When he later asked me what “cruel” meant, I knew I had gone too far and explained carefully and calmly how much it upsets Austin (and me) to hear about all the things he’s not allowed to have. We talked for a good long while and I felt fortunate that kids are so quick to forgive.
And after we drop Braedan at school tomorrow morning . . . Austin and I will head right back to the clinic for yet another transfusion of platelets. Oh boy.
Well. Wow. What a day.
I’m not usually at a loss for words (and I’ll surely manage to find a few now), but that was just a really great day.
Started off with me and Austin eagerly waiting through 50 painful minutes of the morning fluff on Fox 8 (my deep apologies to anyone else who also suffered through that — if you taped it, just save yourself and skip to the last ten minutes of the program, please!). But finally, there they were. First Mark and Dr. Letterio, sitting side by side with their half-shaved heads, talking about the importance of pediatric cancer research. And then, right when I thought the segment would end without Braedan getting his chance in the spotlight, they scanned back to the anchor table and there he was, sitting adorably on the anchor woman’s lap. And she looked just about ready to eat him up. With good reason too! He was breathtakingly cute on that screen, all big eyes and pretty face. I’m trying to find a link to it on their website but haven’t had any luck so far.
Then, by mid-afternoon, Mark and I and his dad were (wisely) in a taxi on our way downtown. A.J. Rocco’s was quite a scene — bottleneck at the door, people pushing their way through, sloshing the cups of beers raised high above their heads. It was reminiscent of my college years thankfully minus the bar smoke. It was part party — hanging out with friends and drinking beer, and part hospital visit, surrounded as we were by our doctors and nurses strangely dressed in street clothes, not a white coat in sight.
The whole thing had an emotional tinge to it: random people hugging and crying, bits of heartfelt conversation wafting up through the ordinary bar noise. I was honored to meet some of the members of Team Austin we didn’t know, shavees who had simply picked my child from among the others on the St. Baldrick’s site, in part because of his cute smile and in part because they wanted to find someone currently “in the fight” (is he ever). People who had never met us, for whom we were no more than a figment of the internet, but who nonetheless raised thousands of dollars in our name. And as I was gushing about my appreciation for all they did, they were likewise thanking me, telling me how proud they were to be part of this, how special they felt to be able to do this on behalf of Austin.
And then there was Cori. This woman had hair down to her waist, literally, to her waist. We don’t even know each other all that well, but she just signed right up, like “Why not?” On her St. Baldrick’s page, she mentioned how when you see a child fall down at the playground, you just go and help, no hesitation. Well, this was the same thing for her: We walk to Fairfax together and wait on that playground, rain or shine or snow (mostly snow) for our boys to come dashing out the door, our little ones antsy in their strollers. We’re “playground friends” as she says. So when Austin “fell down,” she helped.
And help she did. She hadn’t raised a huge amount online, a decent amount but nothing worth the length of that hair. So when her turn came yesterday and her name was announced, the MC asked for extra donations. A few of us walked around the bar with leprechaun hats outstretched for people’s cash. Now remember, most of the people there had already given in one way or another, either money or hair. But most hands managed to fish out their wallets and give some more, because she came up with a whooping five hundred dollars on the spot.
And everybody watched with bated breath as the barber sniped off huge chunks of ponytail to donate to Wigs for Kids. And everybody teared up as the buzzer started working its way across that suddenly short hair. And everybody cheered when she stood up on the chair afterward to show how beautiful she looked.
The MC was standing next to me as I was cheering loudly and turned to ask if she was a friend. “She’s shaving for my son,” was my answer at that moment. But my answer right now is, “Yes. She is my friend.”
And that’s not all. Less than an hour later, one of Mark’s colleagues, the other woman on our team, walked in. And her hair was only an inch or two shorter than Cori’s! So the hats were passed around again and I was thinking, “These people just gave, there’s no way they’ll give again.” But give again they did, handing over another $377. It made me feel a tiny bit guilty, these women with lush long locks willingly sitting on that stage, while I won’t do it and I’ve never even liked my hair! But I’ve suffered enough on behalf of pediatric cancer. I make my sacrifice every day. I’m keeping this hair.
Most of all I felt moved, touched, lucky. I don’t use the word “blessed” very often because it’s too religious for me, but I felt enormously fortunate. Fortunate that my life is so rich with generosity and kindness and friendship and love. That my husband and my children and I are surrounded by such an open and giving community. Yesterday made the heavy burden we bear feel, if not lighter, at least more tolerable. It made what should be an experience seeped only in negativity feel positive.
It made me feel full and whole and lucky. And so I thank you.
A huge thank you to everyone who donated so generously on Breadan’s head and a huge bravo to my big boy who sat bravely sat in that chair and had his hair shaved off “to be like” his little brother.
Despite the cold gray rain, today was a lovely day for the Gallagher family. In the early afternoon, we drove out to Chagrin Falls for the annual St. Baldrick’s event, with an excited but increasingly nervous boy riding in his booster seat. I gently reminded him that he had offered to do this and that it was okay to be scared. “Being brave,” I told him, “doesn’t mean not being afraid. It means being afraid and doing it anyway.” As we mingled through the crowd and saw friendly faces, including one of his favorite classmates shyly armed with $17 worth of her allowance, Braedan retreated to a table with a plateful of pretzels and quietly declared that he wasn’t going to do it unless Daddy shaved his head for him. Of course, St. Baldrick’s rules allow only lisenced barbers to do the honors, so I was starting to get a little worried that we might have a scene on our hands.
But after about twenty minutes of watching other kids and grown-ups happily get shaved (and one poor tween-age girl who burst into tears afterwards and rushed to the bathroom with her also crying best pal), Braedan’s name was called. And there was no scene at all, except for a happy one. He walked wide-eyed but straight-backed to his spot and listened proudly to the MC introducing him as the event’s lead fund-raiser with just under $4000 (just over counting his friend’s extra $17). Then he took his seat and donned his cape and smiled sheepishly at his audience.
Austin watched from my arms with a big smile on his face as the hair fell in clumps around Braedan’s feet. As far as we could tell, Braedan was the only one there shaving for such a personal reason. Austin got his share of second glances as people realized that this particular child’s head didn’t have any of the fuzz left on the heads of other shavees. This particular child was bald not by choice but by necessity.
Braedan got a heartfelt round of applause amid tears (ours not his) of happiness and sadness and pride and excitement for Wednesday when the whole world will be a little balder. As of today, St. Baldrick’s has almost 28,000 shavees signed up (10% of whom are women) and has raised $10.2 million. Team Austin is coming in strong with over $14,000 and is still holding a slight lead over the Rainbow Babies & Children’s Hospital Team (which, in a way, is also “our team”).
If you’re still planning to give, please consider donating on the head of my sweet little (big) brother Cory, who just yesterday organized an impromptu St. Baldrick’s Day event at his house in Park City, Utah where he’ll shave his head for the third year in a row in honor of Austin (nothing like planning ahead there, Cory). I just visited his page on the St. Baldrick’s site and he put it quite simply: “My nephew has been battling cancer for most of his life so please take a moment to think of him when you donate.”
That’s what this is all about, really. Just taking a moment to think of Austin and the 160,000 other children who will be diagnosed with cancer this year, scared children who have no choice but to be brave, small heroes who never asked for such fame. Just sitting there quietly and thinking of them, and their parents and brothers and sisters and friends, may not seem like much in light of the battles they face.
But it is.