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At the end of last week, I was starting to get worried about our head-shaving event this year, feeling like we didn’t have enough shavees, no one was interested, it was a one-time wonder, yada yada yada. Then I had thirteen new registrations on Friday and Saturday alone. We are now up to 47 children and adults shaving and 3 girls cutting and donating, which is a few more than we had at this point last year. It’s still not too late (I did order a few extra participant t-shirts in an optimistic moment), but it’s almost too late so if you’re still signing up, do it today.
So I’m feeling pretty good about our number of people, but the number of dollars raised leaves a little to be desired. Actually, it leaves about twenty thousand to be desired! Last year, not knowing what to expect, I aimed low, with an initial event goal of $15,000. I quickly upped that to $18K, then $20, eventually $30 and finally settled on $35,000, which we surpassed. This year, I thought I’d save myself the hassle of editing the online goal and started high: $45,000. Well, we are currently at just over $16,000 and Monday I lowered the total to $35,000. Boo.
So, now I’m gonna lay on the pressure. This is serious business. This is the business of saving lives. Every parent of a child with cancer already knows the ugly truth about how other organizations use images and stories of children to do their fund raising, but give pathetically little to childhood cancer research or treatment. The esteemed American Cancer Society gave a mere 3.7% of its nearly 2 BILLION dollar budget to pediatric cancers in 2011. Now, I get that cancer affects a great many more adults than children and I, of course, support well-funded and rigorous research into all adult cancers. But I will refuse to give the ACS a single dollar until they stop prostituting photos of sick children, all in the name of opening donor wallets. That pisses me off. (Can you tell?)
St Baldrick’s is different. All they do, all they fund, is childhood cancer research. That is what they devote every second and every dollar to. And it’s research that is truly making a difference. We have St Baldrick’s fellows right here at Rainbow, making discoveries and treating kids every day. I’ve given you the stats before: how many kids are diagnosed, how many survive, how many don’t. But think about this for a moment: the treatments that kids receive today, Austin included, are developed with adults in mind. They’re intended for use on adult bodies, which are distinct and unique from the rapidly developing bodies of young people. The chemo agents Austin had pumped into his bloodstream for all those months were never meant to be used in a one-year-old. Or a three-year-old. So, by the time they hit age 30 or 40, 73% of the “lucky ones” will have a chronic health problem as a result of their treatment. And Austin will no doubt be one of the 42% of survivors who will be living with a severe or life-threatening condition. In fact, he already is.
The very medicines we give our children to keep them alive will most likely kill them.
That’s not okay. That’s not just an unfortunate consequence, the price we have to pay for keeping our babies alive. It’s unacceptable. And St. Baldrick’s knows it. And they are working tirelessly to change it.
And guess what? You’re not just an idle bystander, listening helplessly to bad news. You can actually do something. You can save a life. And be a hero. And all you have to do is shell out a few bucks. It doesn’t even have to be on the heads of my children; they’ve raised more than $1,600 apiece. You can give to some of the lovely and brave children who’ve raised just $15. Or to the female high school senior who’s shaving her head, and who I’m really hoping will hit the thousand dollar mark. Or to the young mom who’s so terrified that her children may someday have cancer that she figured she better do something about it right now. And so she’s doing something about it, right now.
And you can too.
I never had a chance to post about the CureSearch Walk, as I was busy packing for my fantastic getaway. Thank you to those who joined us or donated on our behalf. We had a nice group of about 25 friends and neighbors who walked alongside us on a beautiful sunny morning. The kids, of course, thought it was all about making baboushkas out of their new bandanas and devouring free bagels. And when they called up those who had lost a loved one for the balloon release, Austin eagerly insisted on going up. “Oh-kaaaaayy,” I hesitated, trying to quickly determine which child we’d release a balloon for. I settled on our beloved Ariana (of course) and Dylan, another young friend whose story is too pathetically heartbreaking to relate on this dreary gray Wednesday.
The overall event was nice, raising more than $60,000 for research. My one friend who attended for the first time was amazed at how small it was, compared to the breast cancer events she’s used to. Which brings me to my own little pity fest, egged on by the ever-increasing pink in our world. I don’t mean to begrudge the breast cancer movement its marketing success. I am indeed amazed and impressed by the truly remarkable feat it has achieved in in just three decades, making this once-silent disease the darling of corporations and advertising campaigns. And of course I believe we need to fund breast cancer research and of course I believe that awareness raising is a part of that. And I hate to act like my disease is the only one that matters, because if we all thought that, we’d never make any progress.
But the fact that Childhood Cancer Awareness Month falls right before Breast Cancer Awareness Month does make for a stark comparison, as that wave of pink inevitably bleeds over the calendar’s edges. I remember last fall, over Labor Day weekend, a local design shop began setting up its two-story pink ribbon display facing a busy intersection. Now, I am perfectly fine with them supporting breast cancer awareness and research, but does anyone even know the ribbon color for childhood cancer? It was Labor Day, all of three days into September. Keep your pink confined to those 31 days, dammit!
Okay, that was harsh and selfish, and probably isn’t the answer at all. Maybe we don’t need to designate any set period of days or weeks to one disease versus another, just like we don’t need to confine black history to the month of February. Maybe we simply need to look at numbers and impact and fairly and appropriately fund research across the board. Easier said than done, I know. And it’s no doubt true that more adults get and die from cancer than young people do. But it’s frustrating to know that pediatric cancer kills more children each year than AIDS, diabetes, cystic fibrosis, congenital heart defects, asthma and muscular dystrophy combined. But receives 4% of all national funding for cancer research and treatment. That alone should shock us into action. Not to mention the fact that of those children who do survive, one quarter suffer from life-threatening or life-altering complications from their treatment. And a major study out of Britain recently concluded that for survivors of childhood cancers “their risk of dying earlier than their peers who had never had cancer remained significantly elevated even after 45 years.”
So, I’m certainly not proposing that we stop or slow the progress made by movements like breast cancer awareness (although some people do raise very interesting questions about the tactics and especially about the promotion of products with pink ribbons that likely contain carcinogens, see here and here). But I am proposing that we focus on what’s actually important — in the case of breast cancer, what’s actually important is not saving the ta-tas but saving lives. And the same goes for our nation’s children. We must save them, every one.
There are too many balloons in this scene:
Childhood Cancer Awareness Month is quickly coming to a close and I feel as though I haven’t done my awareness-raising duties. So, here’s my please-come-walk-with-us-this-Saturday push, as published in The Heights Observer:
Krissy and Mark Gallagher, also of Cleveland Heights, are participating in the Walk for their five-year-old son Austin, a two-time survivor of kidney cancer. “Austin has lost his entire right kidney and half of his left to cancer,” explained Krissy. “He’s had 10 surgeries, 13 months of chemotherapy, 12 rounds of radiation, and has spent hundreds of nights in the hospital. Despite all that, he’s one of the lucky ones. Because he’s alive. Until we can say that for all children diagnosed with cancer, our work is not done.”
And that’s just it: Our work is not done.
Childhood cancer remains pitifully underfunded, with only 4% of dollars raised by the American Cancer Society going to research for pediatric and young adult cancers. That’s why our work isn’t done.
No new chemotherapy drugs have been developed specifically for childhood cancers in more than twenty years. That’s why our work isn’t done.
Austin’s cancer story, featured here in the first newsletter for the parent support group In It Together, is sadly not unique. But instead starts anew for nearly 40 families every single day. That’s why our work isn’t done.
Earlier in the month, following the fabulous Stand Up To Cancer telethon, there were many Facebook statuses that read, “I stand up for. . .” I commented on one, listing the names of eight children: Austin, Ariana, Ashley, Dylan, Olivia, Abby, Seamus and Emily. Afterwards, I sat back and read over my list and realized that only two of them, including my own Austin, were still alive. Two out of eight. That’s why our work isn’t done.
Please join us for the CureSearch Walk on Saturday, if you can. Stand with us. Walk with us. Because our work isn’t done.
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.
I was awakened Friday morning at 6:23 by the robocall from our school district announcing the fifth of our five allowed Calamity Days, for another seemingly-out-of-the-blue overnight snowstorm. When I logged on to Facebook to publicly announce my distress at yet another day cooped up with the kids when I thought I might actually get something done (because that’s what we do with our distress these days), I discovered that my “calamity” paled in comparison to what was happening in the rest of the world.
After watching the computer and TV spew forth new images of death and destruction all day, I was struck my how small we all are in the face of, well, in the face of death and destruction. And yet, how strong and powerful we can be at the very same time. That night, Mark and I rented 127 Hours, the positively stunning true story of hiker Aron Ralston. The next night, we watched Charlotte’s Web with the boys. I know it seems strange to lump these disparate subjects into one narrative, but they seemed to come together in a jumbled and sad and beautiful way. A way that reminds us to appreciate all that we have. To notice how much each small thing matters. The tiny miracle that is the spider spinning its web. The child who believes she can make a difference by fighting for what is just. The strength found deep deep within, when no other strength is left, to cut off one’s own arm. Out of a simple and sheer and unstoppable desire to live.
Having seen and experienced suffering in the up close and personal way that we have over the past three years gives me an unshakable and indescribable affinity with the suffering of others. I’m not saying I’ve been there, because our suffering is minor compared to that of many, but I do feel like I can recognize it, like I get it.
Of all the images coming out of Japan right now, the ones that show piles of cars and trains and airplanes, or crushed houses, or huge roiling waves of debris, are all breathtaking. And yet, none of them are quite so moving as those of the toddler standing alone crying for its mother, or the four-year-old stoically being tested for radiation by a masked man, or loved ones desperately searching the lists of names taped to the walls.
The moments big and small, personal and national in scale all converge together in one great picture of humanity. The suffering one small boy in a hospital bed, the suffering one young man trapped by a boulder. The suffering of a neighborhood, a state, a nation, a world. And the beauty and strength and grace of all those fighting to move beyond it. To survive one more day.
There is no brilliant new wisdom for me to impart except this: Calamity days or not, we hold ours tight. Hold yours tight too.
I hope everyone had a lovely Thanksgiving weekend with their friends and family. I remember when this weekend was nothing but one long trip to the bar, night after night of catching up with old friends . . . not so much these days. Ours was rather boring, actually, since Braedan was sick and we were mostly housebound (except for our two-in-a-row Thanksgiving dinners– the Gallaghers’ in the afternoon followed by the Dietrichs’ in the evening, giving new meaning to the term “overeating”).
As always, we are struck by how very lucky we are and how very far we’ve come in the course of the past year. It has been another remarkable journey, made all the more remarkable by its happy ending. On Friday night as we lazed about the living room, Austin decided to switch up his pajama top and bottoms because he wanted to “be a superhewo.” Of course, this is one child who need not don a costume to achieve superhero status, but it did make for cute pictures:
I’ve gotten a couple of questions over and over lately from some of you who are putting a lot of thought into this issue. My answers, of course, are anything but clear-cut. The first is that we really have no idea how likely this cancer is to return. If we looked only at the study protocol we’ve been following, half of the children had a second recurrence (which, not to confuse you, means a third time). But, like I’ve all too often, Austin doesn’t fit neatly into any of the categories of children in that study.
The main reason is that Austin’s initial tumors, on both sides, had that rare rhabdomyomatous differentiation. This is significant in terms of his future prospects mostly because his initial cancer was resistant to chemo and therefore, the fact that it recurred once doesn’t necessarily mean that it beat chemo — which is what makes recurred cancer so much more deadly in the first place. Think about this: if you treat cancer cells with the deadliest weapon known to doctors (chemo) and instead of being destroyed, they instead go into hiding before sneaking back out again, that means they’re pretty darn tough cancer cells. But if you knew that chemo wouldn’t work on them anyway (or would only work on 20% of them as was the case with Austin), and then they returned, it’s a whole different ball game. The cells didn’t actually beat the chemo, they just didn’t respond to it.
Add to that the fact that his most recent cancer was not rhabdomyomatous at all but instead a regular old Wilms tumor and things get even murkier. Did it morph? Was it maybe smarter than the chemo and it somehow changed over time? Or, because we were watching it so closely and frequently in those months and actually saw it grow over that two week period and then quickly swooped in and removed it, did we just catch it so early that it hadn’t yet had the chance to evolve from a classic Wilms into a rhabdomyomatous Wilms?
I know, blah blah blah, I’m sure I’ve lost a lot of you with that damn “r” word again. The important thing to glean from this is that Austin’s recurrence doesn’t mean the same thing as some other child’s recurrence. Unfortunately, what it does mean remains unknown to all of us. Quite frankly, we don’t know whether his chances are made better or worse thanks to his unique situation.
Which brings us to the other major question I’ve heard and that is, how likely is this cancer to spread if it does return? A very important question because if it never spreads, then taking the kidney out preemptively isn’t even necessary. Why not just roll the dice, hope for the best and then if (if!) some small shadow appears on a scan down the road, we remove the kidney then? If it’s not gonna spread anyway, we just scoop out the whole kidney (“whole kidney”? ha!), tumor and all, and start dialysis then, when we must. One problem with this is that it resets the clock and we then have a full twenty-four months before transplant (as opposed to, say, twenty months if we remove the kidney electively in August). The bigger problem is the danger of the cancer spreading. If we leave the kidney in and cancer returns and then spreads beyond it to Austin’s liver or lungs, then we’re in real trouble. Like, you know, real trouble.
Which brings us back again to the rhabdomyomatous question. That variant is highly UNlikely to spread (and Austin’s certainly never has), whereas classic Wilms is more likely to spread. So, like I just asked, was his most recent cancer really classic Wilms or would it too have morphed into a rhabdomyomatous tumor over time?
I know, your head is hurting now. Imagine how mine feels.
So this brings us back to our current — and ongoing — predicament about what to do next. So many of you have expressed what a terrible position this is for me and Mark to be in, how horrible and unfair it seems to place this sort of responsibility in the hands of parents. And in many ways, I agree: I hate the choice we have in front of us.
But I also believe that we are the best ones to make it. In the absence of clear medical and scientific information, no doctor has the answer right now. They have opinions and recommendations, but they don’t know what the right choice is. And neither does Mark. And neither do I.
But we do know Austin. And we know, beyond a shadow of a doubt, that no matter what we do, we will do it with Austin’s best interests at heart. We are his parents. No one on earth could handle this decision more carefully than we will. No one on earth could care more about its outcome than we do.
So who better to make this decision than us? In whose hands could his fate possibly be more secure than ours?
Yes, you read that right. We are wavering. Not about chemo. We feel certain and confident in our decision to stop. But about the kidney.
I was wrong when I said last week that there was nothing we could do to push Austin’s chance of survival up over 50%. There is something we could do: we could get rid of the source of his cancer in the first place. Take the kidney out and put cancer behind us. There’s still a risk, of course, that it may spread somewhere else, but his cancer’s never done that. He’s been battling this disease for almost three years now and it’s always remained extremely local. While there are never any guarantees, we’d be pretty shocked if it returned somewhere else in his body.
But we wouldn’t be shocked if it returned in his kidney. Which makes us think we should just get rid of it once and for all.
Ugh, yuck, I know, pre-emptive strike. I hate the idea of it, of causing him some harm that might not be necessary, of taking away our chance at the miracle. But we have to consider this, we have to remember the ultimate goal. We’re not there yet; we haven’t completely decided. And there’s not a huge rush, we can wait a few weeks and see how we feel, watch his kidney function to see if it actually begins to bounce back, learn a little more about the ins and outs of dialysis (we’re “touring” the dialysis clinic this Friday when the kids are there). We can give him and his body and all of us a little rest, a small break that might involve a short getaway with some swimming, before moving ahead. It’s not time-specific like the chemo that had to happen within five or six weeks of the last dose.
This is not easy, as you know. I dread the very idea. But we’d be happy to take that kidney out and see nothing in it. That wouldn’t make us feel like we’d ruined something unnecessarily (which was our dilemma back in the fall); his kidney docs don’t think it’s gonna last more than a few weeks — or maybe, maybe months — anyway. And as long as there is no active cancer inside him, he could be eligible for transplant in April 2012, two years after his last chemo treatment.
So we do have some control over this situation, a scary amount of control in fact. We can make an enormous sacrifice now so we don’t have to make the ultimate sacrifice later.
In lighter news, Saturday’s sleepover was a huge success and the boys made an absurd amount of money at yesterday’s lemonade stand (thanks to the fact that next to no one requested change!). No news yet from today’s scans.
Oh, and the “B” on that hat? It stands for Braedan!
As we’ve been leaning this way and that over the past few days, swaying back and forth, we’ve acknowledged, with a degree of defeat, that there is no one thing that’s going to suddenly appear that will make this decision any easier.
But we were wrong.
This afternoon, as I sat in a reclining chair (just relaxing) down at the hospital while Austin, hooked to an eight-hour blood transfusion, slept in my arms, I held my breath and opened a return email from the lead author of the study protocol we’ve been following. We’ve never had any contact with this doctor, the head of Pediatric Oncology at Children’s Hospital-Los Angeles, whose name I simply typed into Google to search for an email address. His response, which I was quite frankly surprised to receive at all, said that there is NO STATISTICAL BENEFIT for children who did more than one maintenance cycle of chemotherapy. Here are his words, copied from my email: “Due to the small numbers, we were unable to detect any statistical difference or advantage for those patients receiving > 1 maintenance cycle.”
Well. That pretty much does it. Barring anything suspicious on Monday’s abdominal ultrasound and chest CT, that pretty much does it. There are so many known disadvantages to carrying on and no known advantages. How could we not choose to stop? It would almost be crazy to keep going.
We’ve been leaning in this direction, as I think you could tell, wanting to stop. But unsure whether we wanted to stop just because continuing would be so horrible or because it was really the right thing to do. Every time we check in with each other, last thing before drifting off to sleep and first thing upon waking in the morning: “Which way you leanin’ now, honey?” our answer is, “Weeeeellll, I sort of think we should stop, buuuuuuttttt . . .”
And now, we can feel like we are making the best decision given the information we have. It is not a victory, not a free pass to the future. We still face every unknown we faced yesterday: His kidney could fail anyway, his cancer could return and be even harder to treat. But at least, we have some peace in knowing we are not skimping out, we are not cutting loose early for selfish reasons.
The big question I assume most of you are asking, because I’ve asked it myself, is: Why does anyone do more than one cycle if there’s no detectable benefit? I don’t have a scientific answer for that but I think it’s because the researchers were trying to find that detectable benefit. They were hoping that four cycles would push the survival rate up to 60% and five cycles would push it up to 65%. But that didn’t happen. Even with extra weeks and months of chemo, the best number they could reach was 50%.
Now that shouldn’t make us feel super confident moving forward, and trust me, it doesn’t, but if this cancer returns, well, it might have returned anyway. I mean, if chemo is gonna work, it should have worked, right?
We had dinner with my parents the other night and my mom came armed with scrap paper charts to list out the pros and cons of each option. My dad had already made up his mind (stop), but the rest of us were still hemming and hawing. Before we left, my mom (still undecided) landed on an important point: Stopping is the one chance, the only chance, we have at a huge victory, at (and you know she didn’t use this word and I can’t believe I’m about to either, but here goes) at a miracle. Stopping is the only way we can ever look back and say, “Wow, we really, really did it. And we didn’t have to sacrifice every last piece of ourselves. We beat that damn thing and we’re still intact.”
We might be able to do both: we might be able to remain intact and still win. And that is what we are going to try to do.
I know why Austin enjoys the hospital so much. He has my complete attention when we’re there. All the usual distractions are erased: laundry to fold, computer to check, big brother to care for. Nope, when we’re there, even just for our twice-weekly clinic visits, I have nothing but occasional phone-surfing to draw me away from painting, reading, playing with the little man.
This past Thursday, while Austin received a blood transfusion over three-and-a-half hours, we sat next to each other on a bed in front of an eight-foot window looking down on the construction site six floors below us. We must have sat there “in the sun” for at least an hour, gazing at the forklift and bulldozer driving back and forth across the dirt. Then he sat in my lap on a chair and reminisced about last summer at Chautauqua: “Remember when . . .” he’d start each sentence, recalling boat rides and fireworks and trips to the mini-amusement park down the road.
“We’ll do that again,” I kept saying over and over, already looking forward to our upcoming summer, when cancer could be well behind us. But I know that boat rides and fireworks and trips to the amusement park might not happen too quickly. We might still be in the midst of cancer when summer arrives. We are indeed halfway through the mandatory eightteen weeks of treatment. But those extra twelve weeks loom large on the horizon. The fact that Austin is doing so well, tolerating chemo and bouncing back after each dose, will probably bite us in the ass in the end. As long as his bone marrow hasn’t been totally depleted, we really have no good excuse for stopping treatment in April and will almost certainly continue through July. Ugh.
This protocol, the one designed for relapsed Wilms, actually calls for up to six rounds of the twelve-week maintenance cycle we’re currently in. As I explained a while back, few children are able to withstand the full ninety-week protocol (six 12-week maintenance cycles after one 12-week induction cycle and one 6-week consolidation cycle) because their bone marrow is so completely destroyed. When we signed on for this treatment plan, we committed to at least one of these six-week cycles and two if Austin was able.
And, of course, as of now at least, he is able. So strong, little Austin, too strong. If he breezes through the next three doses as he has through the past three, we will definitely be in for the long haul. There’s a part of me that hopes he isn’t strong enough just so we can be done. But, as his oncologist has reminded me too many times, our ultimate goal is not an easy few months or a pleasant summer but survival.
Survival. There’s just no arguing with that.
