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Biking, walking, . . . how about mountain climbing?
The Climb for 5 team raising money for St. Baldrick’s has begun their journey up Europe’s highest peak, Mt. Elbrus in Russia. Today they’re climbing in honor of Emily, another of the five Ambassador Kids, complete with her favorite teddy bear and pink Mickey Mouse ears (atop one of the climbers’ heads). I’m not sure which day they’re dedicating to Austin but when they do, they’ll have his wishing star to guide them:
One side has Wishes for Austin and the other Wishes for the World, each with the same five wishes: Health, Joy, Love, Hope and Peace. I hope it isn’t too cumbersome for the climbers to carry in their packs (a malleable, unbreakable teddy bear is easier to stuff into small compartments) and that it doesn’t get too destroyed by the inevitable elements. But I guess if you truly have those five things, you really can’t complain about anything else, right?
St. Baldrick’s season may seem like it’s over, but they’re not done raising money for pediatric cancer research. And now instead of shaving heads, they’re climbing mountains.
In 2010, Patrick McCarrick launched a new initiative called Climb for 5, in which mountain climbers raise money by scaling the tallest peak on each continent in honor of the five St. Baldrick’s Ambassador Kids. So in September of this year, a group of seven climbers will head to Russia to climb Mt. Elbrus, Europe’s highest mountain at 18,500 feet. I spoke with Patrick on the phone last week and he compared mountain climbing to cancer treatment, something I’ve done before myself, here after my run up Mount Cadillac. Each leg of the climb will be dedicated to a different child and they’ll carry something special of Austin’s to represent him. Since he doesn’t have a lovey or any single object that perfectly captures his journey, he and I are going to make the most fabulous ever wishing star to send up the mountain. (I offered to send Austin himself but they turned me down….)
You can learn more about Climb for 5 here or here. And you can still donate, either to the climbers in honor of Austin or to our very event. This year’s shavees and events can collect money through the end of this month. So far, St. Baldrick’s has raised more than $30.4 million dollars, the most ever, $36,000 of which came from our event. I’m so honored to have been part of the most successful season yet.
We were doing some repairs to the ceiling in Austin’s closet last week and so removed all of its contents to his bedroom floor (boy, that was scary). Along with a silly array of clothes, shoes, blankets, puzzles and too small snowpants came his bag of wishing stars. It had been tucked away on the back of a shelf since his last overnight stay at the hospital, more than a year and a half ago.
I always brought it along with us, even if we were scheduled for just a single night. I usually only put a few of our favorite stars up, just enough to decorate the room a bit and give me that necessary feeling of security, as if those stars were watching over my little one as he lay in that bed. The longer we stayed or the more major a procedure he was getting, the more stars went up. In those dreadful days and weeks leading up to Christmas 2009, his room looked like this:
But we got lazier as our visits went on and on (and on), and I would try to get by with hanging only ten stars at a time. Austin was no fan of this and once scolded me, “This room looks ugly! We need more stars!” He certainly made sure we never left the house for a hospital visit without that overflowing paper bag full of wishes.
I’ve thought on and off about what I should do with them now to ensure that they last. The stars from his first round of cancer were long ago inserted into a photo album for posterity. But those were all made by me, transcribing the wishes of others, so they were much flatter and simpler than the spectacular, glittery, bedazzled stars made by all of you.
I suppose I should at least photograph each individual star before they get too wrinkled and crumpled in that bag.
But anyway, that bag. The kids must have gone through at least a few of them because there were some on top that were not part of our regular rotation, some I haven’t seen in a good long while. Including one from my father that said, “I wish that Austin and I will go skiing together next winter.” I remember at the time thinking, “Oh that’s sweet … but not gonna happen.” Not the very next winter at least.
But it did happen. My dad wrote that wish in December 2009 and by the following winter, March 2011, just fifteen months later, they went skiing together down the mountains of Park City, Utah. (It wasn’t a very successful skiing adventure, that day, but that’s a story for another time.) But the remarkable fact is that they did it. They skied. Together. The very next winter.
The wish came true.
And I started wondering: How many more of those wishes have already come true? How many of us — friends and family and strangers — wished for my little boy and how many of those wishes have actually happened?
And the answer is a lot of them. All the simple little ones like laughter and giggles, cartwheels and playdates, going to school and making friends and riding a bike. He’s done all those things. He does them every day. He’s had that sleepover in the tent (well, he didn’t last the whole night, but still …), he’s gone sledding down Coventry Hill and boating on Lake Chautauqua. He’s met his little cousins and visited with friends far and near. And the biggest wishes have come true too. He is here, after all. He is with us, and so is his kidney, chugging along.
He’s checking’em off, one by one. His own joy-filled bucket list. That he has many many years to complete.
For your viewing pleasure, here are the latest pictures of the boys’ treehouse.
From the outside:
And the inside:
OK, that’s all I have for you this evening. Now back to your regularly scheduled programming ….
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.
I overslept. Can you believe it? I rolled over from a very deep sleep, groggily looked at my alarm clock (which I’d set for 6 am) and saw that it was 7:15. 7:15! And we were supposed to have arrived in the sedation unit at 7!
Well, I dove out of bed and went rushing around the house, waking Mark, “Hurry, I’m late! I need your help!”, eating a quick breakfast because my blood sugar was low (of course), digging the car out from under the major snow dumped on it last night and zooming down the hill to arrive in sedation at 7:45.
Nice start to my day, huh? Of course, we had nothing with us except the few toys I managed to stuff in my purse along with a crumbled breakfast bar and two juice boxes. The sedation nurses were great; nobody said, “Late to your child’s first radiation appointment?! Tsk, tsk.” We went through the procedure quickly, forgetting the dose of anti-nausea medicine, and were in the elevator on the way down to radiation when the doctor got a page saying Austin Gallagher had lost his slot!
But we arrived mere moments later and he’d just been bumped to allow a more punctual patient to go first. After ten minutes, he was wheeled into that room, carefully placed on his body mold, making sure all the laser beams were lined up with the grid of permanent marker on his belly and chest. I had to wait outside which is always the hardest part. Not that he needs me; he’s totally “asleep” and has no idea I’m not dutifully by his side. It’s just the fact that something is happening to his body that is too dangerous to happen to mine. He’s being zapped with those poisonous beams and I can’t be anywhere in the vicinity, even safe under an apron.
So I sat in the hallway and drank coffee with dry “creamer,” while old bald people passed back and forth in front of me. This is not a place where I belong, where my beautiful baby belongs. This is not where we should be. And yet, here we are.
It lasted a few minutes and he was awake on the table, struggling to sit up in his half-drunk state. Back to sedation where he wolfed down that breakfast bar before we were delivered to our room on R2.
Shortly after checking in, as I put away Austin’s few toys and texted Mark lists of things to bring, he started throwing up. Puked all over his sweet little gown and bed. The nurse quickly ordered his Zofran as I cleaned him up. Then, as I was holding him in my arms, he did it again, this time all over me and the only pair of clothes I had. Ah, typical; it’s always the little things. They brought me scrubs, took my jeans to wash while I let the puke on my sweater dry. He quickly felt better and we colored, read books and watched Up for the gazillionth time.
Mark arrived in the early afternoon with a suitcase full of gear and I began the process of re-hanging his stars from the ceiling. I think I’m gonna have to put them into rotation, so that only small portions are hung for each visit because it takes a lot of time and some precarious balancing acts to get them all up there. But he loves them, and with good reason:
These images are from his room the week before Christmas. He has quite a collection! And it’s still growing.
You can see him there underneath his “starry sky.”
This is a silly Austin smile, not a pained grimace.
His star-covered tree
Mark is there now, still awaiting the administration of Austin’s first chemo dose. He needs to be hydrated for a few hours beforehand, hence the delay. So, they play and nap and twiddle their thumbs and then it begins.
Last night, as I was folding laundry before bed, I got sucked into the last fifteen minutes of The Sound of Music. There was the Von Trapp family, escaping the Nazis, literally climbing over the mountains to freedom. The little ones trudging along in their lederhosen, the father carrying the youngest on his back. And, as corny as it sounds, I saw us in them (minus the lederhosen). “Climb every mountain . . .” (come on, sing along now) “Forge every stream, Follow every rainbow, til you find your dream.”
No, this isn’t about a bad pathology report or anything. It’s actually sort of funny. (Just wanted to set your minds at ease after reading that title.)
You know the whole “pee is pee and pee is good” business and all the stars that include wishes for pee and lots and lots of it? Well, he has continued to pee, now filling diaper after diaper. Late last night, after being moved back to our room at 9, he was in and out of sleep, experiencing a lot of discomfort. He kept trying to shift position to get comfortable but moving, of course, caused more pain. He eventually fell into a fitful sleep and I’d been lying on my “bed” (not really, more like rubber bench with sheets) hoping for sleep myself when suddenly I turned and he was sitting up! And crying.
I rushed over and managed to somehow pick him up in my arms, the first time I’d really held him since Monday morning. He was shaking and whimpering, and we finally worked around all the tubes and wires to sit in the chair. He calmed down and we were talking a bit, looking at stars and his lit-up tree. He said he had to pee and I told him he was wearing a diaper and to go ahead. Well, next thing you know, there’s a warm wetness spreading all over me. Soaked, drenched I was, as in this boy can pee. Apparently he’d been fiddling with this diaper (or fiddling with what’s inside his diaper, more likely) and it wasn’t secured on. I sat there wondering what to do next, how I would manage to change his gown without hurting him, what I was going to wear since all I had was a pair of jeans, when it struck me: This was pee. This was exactly what we’d all been wishing and hoping for. I started to laugh and couldn’t stop. And we just sat there in that chair all sopping wet laughing and laughing about the fact that he’d peed on me. You know what they say . . . (insert title now). I got my smile then too, along with some weak giggles.
Eventually I called our nurse and she helped me change him and brought me scrubs to wear. We were then mostly up throughout the night, dealing with one minor issue after another, from faulty IV lines to painful gas-passing (another excellent sign). Finally, we fell asleep squeezed together in his bed at 5:10 only to be woken by the surgical residents (who may have good hands but not the best bedside manners) at 6:15, who proceeded to tear an enormous and very sticky strip of tape off his wound. Not really pleasant. This was followed by a blood draw. I am continually amazed at how quickly he recovers from the many injustices his small body is subjected to. He is indeed improving: he’s (obviously) peeing and now even pooping (meaning no post-operative ileus!) and his kidney function numbers are returning to their previously normal range.
Mark relieved me at 8 and I just woke up in my own bed after my most restful four hours of sleep in a good long while. Pathology results are due back at 4, so keep wishing — you can now replace your “pee” wishes with ones for “nephrogenic rests” and “favorable histology.” Maybe those wishes will come true too . . .
Here we go again.
Mark and Austin just left for the hospital and I will meet them this there evening (after updating, running and having dinner with at my parents’ with Braedan). I will stay the night and Mark will return bright and early tomorrow morning. This afternoon, Austin needs a “bowel prep” which is about as lovely as it sounds. They will literally flush his bowels out, which first requires the insertion of an NG tube. Another family favorite, this involves one of us (thankfully Mark this time) holding him tight in his arms facing outwards while a nurse (or two or three) stick a tube up his nose and down to his stomach. Then they pump him full of “GoLightly” (I’m not kidding about that brand name) and he poops all night long. Oh, joy.
He’s due in the pre-op room tomorrow at 6:30, with surgery scheduled to start at 7. I imagine we won’t see him until at least 3 pm, although the doctors will call us periodically from the operating room to update us on his progress. After surgery, he’ll be in the PICU for anywhere from a few hours to a few days, depending on how surgery goes and how (and if) his kidney is functioning. After the surgery that removed his right kidney in September 07, he was only in the PICU for eight hours before returning to the regular oncology floor. But after the first kidney-sparing surgery in October 07, we were there for four days. The nice thing that time was that we were able to keep our regular room the entire time which gave me and Mark somewhere to shower or nap, plus allowed us to leave the wishing stars hanging from the ceiling awaiting Austin’s return. I’m sure the nurses will try to accommodate us in this way again, but it all depends on how crowded the floor is and if they can dedicate a room to a patient who isn’t actually in it.
The PICU is a pretty miserable place. You have no privacy, only a glass wall with a curtain pulled across it. There are lights and beeping machines at all hours of the day and night, not to mention the constant PA announcement requesting emergency help of some sort or other for some child or other. Rest is hard to come by, for both parent and child. So I do hope our time there will be short.
And now I focus your attention on what we’re up against:
There are so many little milestones we must reach before we can claim victory over this beast one more (one final) time. First, the surgery itself. The doctors need to be able to remove all the cancer they see, while leaving the kidney intact. This is an extremely complicated procedure and there are many things that could go wrong. Remember how all the scar tissue has caused adhesions and how the kidney is now suctioned up against the spleen? The kidney could fail (probably by bleeding out) during the actual surgery and then be removed. The doctors could also find more cancer that they’d expected and opt to remove the kidney (after calling us first).
So, if he makes it out of surgery tomorrow with any kidney at all, that’s one small step in the right direction.
Then the kidney has to work, which could take some time. He’ll have lots of bloodwork and we’ll be watching that pee output with an eagle eye for days to come. He may need temporary dialysis to jump-start the kidney. But if it keeps chugging along, that will be our second small success.
The next thing we have to worry about is the pathology of the tumor(s) they’ll remove along with a sampling of lymph nodes. These results, which will determine future treatment, should come back by Thursday. They might tell us that the tumor(s) is the same rhabomyomatous type he’s had in the past which would mean no need for chemo but maybe one three-week blast of radiation (which, yes, could destroy the kidney we worked so hard to save). The results could tell us it’s a “regular” Wilms’ tumor (which we don’t expect) necessitating chemotherapy. They could even tell us that the tumor has unfavorable histology (or anaplasia or displasia) which you may remember me describing as psychotic cancer cells as opposed to the more normal (and treatable) bad cancer cells. If that was the case (again something we don’t expect), we would go back in and remove the rest of the kidney just to be safe.
And then there’s this possibility, which is what I want you to wish for (even if you can’t pronounce it): It could be a nephrogenic rests, those pre-cancerous tumors. If this was the case, he’d need no additional treatment and we’d all pat ourselves on the back for getting it out of him before it turned into another Wilms’ tumor.
So you can see, we have many hurdles to leap over, many mountains to climb, many battles yet to fight. But if anyone can do this, Austin is the guy.
He told me last week that he could do anything. It was when I voiced concern over the height of the furniture he was about to dive off. But he looked at me and stated with the clear conviction of a three-year-old, “It’s okay, Mom, I can do anything.”
So here he is, poised at the top, ready to dive. And he can do anything.
Finally, some answers to the question I’ve heard literally hundreds of times over the past few days: What can I do to help?
First, the practical stuff: We will need dinner tomorrow (Thursday) and next week (Monday through Saturday). If you’re interested (and have time), please email my friend Julie Rink Mokotoff at firstname.lastname@example.org with your contact info and any day you’re not available, so she can create a schedule. There are bound to be more offers than days, so she’ll do her best to work you all in now or later, depending on our needs as the weeks (and perhaps — but hopefully not — months and years) go by. She will reply to you with your assigned day and directions on how to deliver. These need not be big or fancy meals; just enough for me and Mark (as Austin, if he’s able to eat at all, will be on a restricted diet, and Braedan will likely eat elsewhere) and we won’t often be in our house at the same time, so dinners should be something we can split up and heat or reheat depending on when we actually have a moment for mundane things like food. I’m allergic to shellfish (and have a strong dislike of mushrooms) but other than that, anything is fair game. And don’t worry about dessert — I do not intend to take those “fattening up” posts literally!
Next, playdates: Breadan will need to be picked up from school some days next week. My parents are in town and have a pretty open schedule but, since he’ll already be sleeping there, it seems more fun for him to get to go to a friend’s house. I’ve had many offers over the years from people willing to host him, but, without offending anyone, we do want him to be as comfortable and familiar as possible, so will try to accept only those offers from his already established buddies. He finishes school at 3:05 on all days but Tuesday, when dismissal is at 2:05. His teacher has said he is welcome to stay with her in the classroom for an extra twenty minutes or so if your own child’s pick-up creates a conflict. Please email Lisa Welsh at email@example.com with your availability and she will assign days and provide you with directions to Fairfax School. Again, we will try to work people in as time goes on.
And now for the less practical but just as important stuff: Back in October 2007, I decorated Austin’s hospital room with “wishing stars” which dangled from the ceiling and contained individual wishes sent from friends (and strangers) near and far. Some were funny, some heart-warming, all sincere. And he loved them. We used to lay together in his hospital bed and he would reach up to his stars as they twirled and spun above us through those long and sleepless nights.
Given that wishing stars seem particularly appropriate at this time of year, I will once again be hanging them, both from the ceiling and on the artificial tree we’ll bring with us next week. I am happy to transcribe people’s wishes if they want to send them along electronically, but I also welcome homemade stars (the more glittery and colorful, the better) from as many of you as possible. Drop the off at our house or with Braedan at school, and if you are a pre-school family, leave them with Lola Chicotel (in Mrs. B’s morning class) for her parents Christie and Dom to deliver to us.
The wish I will write on my own star is one I hold tight in my heart for both my children. It may seem simple at first, but it requires the attainment of many many milestones along the way. And that is that both my boys get the chance to be happy grandfathers.
If that wish comes true, then we really will be the luckiest.
So, it’s that time of year again. We head into the hospital tonight after dinner to hydrate Austin for another CT scan tomorrow. His last was in the end of June and if this one comes back clear, we’ll be able to wait six months until the next (a welcome break to be sure).
We’re going to try this one unsedated, now that he’s three, which I think will be fine. The real reason we’ve been sedating him is so they can run a tube down his throat and give him the contrast he needs to “drink” for the abdominal scan (not easy to do on an unsedated child, I can tell you from experience). But this time they’ll mix it with Gatorade and let him sip away for a few hours, which I imagine he’ll enjoy since it’s the only thing he’ll be allowed to eat or drink all morning. Then Mark will stand on one end of the machine and I’ll stand on the other and we can even hold his hands while he moves through it. He’s done that part unsedated once before when he just needed a chest CT (which doesn’t require drinking the contrast). He’s also scheduled for an ECHO in the morning to check for possible heart damage from one of his chemo drugs.
We’ll hang out in the hospital for six hours after the scan to continue IV hydration and should be home tomorrow evening. The boys have both been promised a hospital cafeteria corn dog for dinner tomorrow, so they are plenty excited!
This afternoon, Braedan and I will make another glittery wishing star to hang from Austin’s ceiling and then it’s back to the old routine: wish, worry, wait . . . and exhale with relief when the good news is announced. Thanks for doing the same.