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May seems an awful long ways away right now, as I look out at this winter wonderland, layer upon layer of snow and ice covering every visible surface. But May is the next time we’re scheduled to go to the hospital. Three months away!
Everything yesterday was fine. His chest CT was clear and the abdominal ultrasound showed no changes from the last time. His creatinine held steady at its new December low and his hemoglobin jumped up in a big way. The hemoglobin thing is pretty significant, here’s the medical scoop: Chemo obviously destroys blood cells and the body’s ability to produce new ones is often slower than a scheduled chemo regimen, leading to inevitable blood and platelet transfusions during treatment. Once chemo is stopped, the patient’s bone marrow should slowly but steadily produce new blood cells and “refill the coffers,” until they reach a normal level. This has happened for Austin in terms of white blood cells and platelets and neutrophils but not for red blood cells, as measured by his hemoglobin. We believed the reason for this was twofold: 1) the kidney produces something called erythropoetin which makes red blood cells, so we assumed his wasn’t doing that (or wasn’t doing it quickly enough) and 2) he was spilling red blood cells into his urine, again a sign of weakened kidney function.
So we’d been planning on blood transfusions well into the future, as often as he needed them, which last summer was every four to six weeks. Well, his last transfusion was in the end of August! In November and December, his hemoglobin was low but not quite low enough to necessitate a transfusion. And yesterday, it had risen by an entire point to a number that is two-tenths of a point away from normal!
That kidney is indeed recovering.
Even his blood pressure was down, always a huge relief. So we carry on, three more months with no hospital visits, three more months of health and growth and recovery. Working kidney, cancer-free … what more could we ask for?
Springtime would be nice!
We could tell Austin’s life story through his hair.
At birth, he, like his brother before him, had a head full of dark bushy hair. (And yes, for what it’s worth, I did have heartburn.)
At about six months he, like his brother before him, exhibited classic signs of male pattern baldness:
It slowly grew back and by the time he was diagnosed, he had these two spectacular sprouts of hair caused by a double cowlick. We called them his horns:
Then of course, he was rendered completely bald during his first rounds of chemo. Innocent bystanders used to comment about how their children had also been bald as babies and I could just never let it go and instead had to say something like, “Oh, he wasn’t bald as a baby. This is because of chemo.” I always said it in a cheerful voice so as not to make them feel too bad, but they rarely knew how to respond after that.
And then, by the spring of 2008, my cancer-free toddler grew new hair. And, whaddya know, that trademark Gallagher black grew in blond!
As time went by, it darkened but the first growth was still lighter than the rest prompting an amazing number of people to ask if I “did his tips.” Really? He wasn’t even two. Who would even think to color a two-year-old’s hair?
By last summer, it was mousy brown and extremely long. Here he is getting his shaggy rock star locks trimmed by Grandma Gallagher:
Then winter arrived and with it that brutal rogue that is cancer. On the verge of losing all his hair again, Austin helped out with shaving Braedan’s and Daddy’s:
Shortly after starting chemo, I was coming away with clumps every time I ran my fingers through his hair. Look closely at the sheets behind him in this pic taken while he was sedated for radiation:
Lintbrushing the sheets just wasn’t enough any more, so a shearing was in order:
Then a very strange thing happened. His hair began to fall out. No, that’s not the strange part, we were expecting that. The strange part is that it began falling out in bits and pieces with these bizarre patches left behind.
Each day, the patch changed slightly as a few more random hairs fell out. It reminded me of a computer generated image of the polar ice caps shrinking over time due to global warming. Day by day getting smaller and smaller until there was simply nothing left.
And then, within a few short weeks, it was gone, with only the eyelashes and eyebrows remaining. Another six weeks of chemo and those too had vanished.
Until one morning last week, when he woke up, felt his head and announced, “I think I have more hair today. I need to look in the mirror.” Which brings us to today (yes, he’s wearing a cape — and why shouldn’t he?):
And somehow, through it all, what remains is that smile.
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.
People keep telling me to go with my gut but all day long my gut’s been telling me to stop and then tonight, it switched over and said continue. Aaaahhhhh.
Here’s some more info, in response to some of your questions and comments (thank you for those) and to help me further flesh this thing out:
If we stop, we would certainly continue to monitor Austin. As his oncologist said today, “We wouldn’t just wish you luck and send you on your way.” He’d still have frequent, probably weekly, labwork to watch the kidney function, plus abdominal ultrasounds and chest CTs to check for relapse. He would not be able to do either MRIs or abdominal CT scans due to his diminished kidney function. That gives us pause because abdominal CTs seem more accurate than ultrasounds but if we have the right person doing them (since ultrasounds are more user-sensitive than CTs), they’re still enormously useful. In fact, we followed his “shadow” in the fall on ultrasound for many months (and some people argue that this is a better approach anyway because it reduces the radiation risk). So we’d still be watching, at least every three months until we felt that things were holding steady enough to move to six.
Austin is scheduled to have an ultrasound on Monday which could help us finalize this decision since if there’s something suspicious or different from the last time, we’d obviously opt to move forward. But his full scans, including an abdominal MRI, were clear in the end of March so we expect and hope that hasn’t changed.
If the cancer were to return again, we would remove the kidney then and there without another thought. But it might be too late. This cancer is tough enough to “cure” the second time around; the third time is almost definitely fatal. So, you see, this decision is a heavy one. Here’s what the study shows us (and remember, there are no kids like Austin in this damn study — every child with bilateral Wilms was removed at the onset and none of the kids had Austin’s rhabdomyomatous variation) but it shows that out of 60 children with relapsed Wilms who went through this protocol (having anywhere from less than one to the full six maintenance cycles), 33 of them had a second relapse and, of those, 27 died.
This lovely bit of information (which is shockingly new to you but sadly familiar to us) could actually push us in either direction. It could make us say, “Holy shit, this is serious stuff. We need to do everything possible to not let it come back, no matter how miserable it may be.” But then there’s another side of me that says, “Wait a minute, here I am being told that my child has at best a fifty percent chance of living, at best. Shouldn’t I do everything in my power to make sure his life, however short, is good? Or great, even? That he doesn’t spend half of his piddly little life in a hospital, hooked to machines, on the wrong side of the window?”
It’s a crazy way to think. It’s unnatural for me to write these words or think these thoughts and yet, this is our reality. This is how we have to think. We have to know that if we choose to stop, he might die. But, fuck, he might die anyway. We might remove his kidney and keep pumping him full of chemo for week after week and cycle after cycle and he might die anyway!
Because here is what the study does not tell us, anywhere, ever: what difference additional cycles make. It never ever mentions how the 12 kids who did one cycle fared compared to the 14 who did two compared to the 2 who did five. They never tell us! So how are we supposed to know if two is actually better than one? Or if two is even enough — what if we have to do three or four or six to make a true statistical difference? (And then how many of those kids end up dying from treatment related complications or from leukemia ten years later??) Our oncologist has requested that information and never received it but I’m asking on my own, sending random emails to the study authors to see if we can glean a little insight into what seems to be the most important factor.
And then there’s the issue of how long the kidney will last if we do stop. It could, of course, fail next month. And then we’d be on dialysis anyway. Or it could bounce back, free from its recent stress, regain some function and keep on keepin’ on. Remember, it only needs to make it two years before he can be transplanted, as long as he remains cancer-free. So even if it chugs along for just another six months or year, it would still get us that much closer to transplant.
Our oncologist has said he’ll support whatever decision we make. He recommends continuing but he also understands and respects the other side. He told me today that if he believed we were putting our child at risk or were making a mistake, he would tell us. But he doesn’t think that. He sees the value of either choice. Which says a lot because, an an oncologist, his job is solely to rid my child’s body of its cancer.
Our job is so much more.
So we go back and forth, back and forth, completely certain that one choice is right until a half hour later when suddenly the polar opposite seems the wisest option.
After twenty-four hours of research and discussions and lots of mulling, plus a quick meeting with our oncologist, we’ve narrowed down our decision to two options: All or Nothing. Either we remove the kidney and finish the next twelve weeks or we stop.
First of all, temporary dialysis is not an option. As Mark and I figured out on our own last night and then had confirmed by the docs today, there would be no way for the body to save its waste fluids for a dialysis catheter if a working kidney existed. We also learned that we can indeed do this next scheduled chemo with a GFR of 27, plus the one scheduled three weeks after that, but not the two that follow. And in the cancer world, there is no point in doing half a protocol — the strength is in the combination of drugs. Again, it’s all or nothing. So if we decide to move ahead with the chemo he was supposed to start tomorrow, we would essentially be committing to removing the kidney within six weeks’ time. “Essentially” nothing, we would be committing to removing the kidney within the next six weeks.
Or we stop. Right now, today, done with treatment. We assume we’ve done enough, that if chemo’s gonna work, it’s already worked. That our decision back in December to do the most aggressive radiation would have taken care of any potential spilled cells. That oncologists are so prone to over-treating, especially with children, that they never risk treating just the right amount. It’s the old hammer versus chisel analogy: We could probably treat this cancer with a chisel but we just don’t know so we use a hammer instead . . . and cause all sorts of collateral damage. We could figure we’ve done enough — we surgically removed the tumor, we blasted the entire area with radiation, we further blasted it with chemo, and that’s that. We could hold onto that kidney and hold our breath.
It is the choice between a bad thing definitely happening and a terrible thing maybe happening.
Some of you may be reading along and thinking, “Wow, how could they ever risk another relapse? Why not avoid it at all costs?” Well, I’ve thought that too in the past day but, like I said, I’m vacillating and after learning a little more about dialysis and transplant, I’m thinking that too should be avoided at all costs. It’s one thing to hear from the doctors who say things like, “Kids do well on dialysis” and another thing entirely to hear from the parents who say it’s worse than cancer treatment. I’ve reached out to some parents I “know” (in the virtual sense) and asked about their experiences with dialysis and transplant and what I’ve heard isn’t encouraging.
Worse than cancer treatment. (And this is from people who truly know, who’ve done both.) Worse than chemo and radiation. Harder on the child, harder on the parent, harder on the family.
I’ve heard about people feeling tired and letharigic all the time, even people (like Austin) who didn’t feel that way with chemo. I’ve heard about severe fluid restrictions and rigid diets, much much harder than the seriously modified renal diet we’re currently following. About kids taking forty-plus oral meds a day, when we’re forced to cajole and trick and bribe and threaten to get Austin to take a mere four or five right now. About kids with stunted growth because dialysis leeches the protein out of their system, starving their muscles of all their fuel.
I look at him today and he’s fine. Fine. A totally normal little boy, who is still growing and still playing and still eating and still peeing, and I wonder how I could subject him to something so horrible. How could I willingly take away something that is still working, maybe not perfectly, but still working to give him something I don’t know he needs? Something that, in addition to possible good, can also give him secondary leukemia or leave him deaf.
It is not a good place to be, not a decision any parent should have to make. We are both going back and forth, back and forth, every few minutes taking a gut check: “Which way are you leaning now, honey?” We’re good at communicating, me and Mark, we trust and respect each other completely. And I think we’ll come to a decision together so we can move forward together. We’ve postponed tomorrow’s chemo until at least Monday so we’ll have a little more time (so if you’re scheduled for a playdate or a dinner, you’re off the hook for the time being). Of course, neither of us is sure what will eventually make one decision stick over the other. I welcome your input, even if it’s based on nothing more than intuition. I won’t feel pressured to follow any one person’s advice and I’m certainly not asking anyone to make this decision for us, but I find it helpful to hear all sides and to consider all perspectives.
Sometimes I feel as if I’m standing outside myself, watching my life like it’s some tear-jerking episode on a family drama, like it couldn’t actually be happening to me. Of course, such a dilemma would probably be resolved within a television hour. Ours is more like that frustrating season finale where you’re left hanging because it may be years before we know if we’ve made the right decision. If there even is a right decision.
Maybe the right decision is simply whichever one we make.
Well, now, that puts us between a rock and a hard place, doesn’t it?
Yesterday, I briefly mentioned today’s GFR and its “enormously consequential” results. Perhaps that got lost in my (self) motivational running analogy, but here’s the deal: Austin had another GFR today, the kidney function test we’ve been using to dose-adjust his chemo. As you may remember, his last results were a pretty dismal 34. If it dips below 15, he will begin thrice-weekly hemo-dialysis. This will necessitate another surgery, almost immediately, to place a dialysis catheter in his right sub-clavicle vein. It may also necessitate the removal of his remaining kidney.
Usually, when someone has chronic kidney disease and their kidney(s) fails, that non-working organ is just left inside them to shrink and wither away. In Austin’s case, because his kidney is the point of origin for all his cancer, we obviously don’t want to let it just sit in there if it’s not doing us any good. However, there is a possibility that he could regain some kidney function once the stress of chemo is removed. Sooooooo, you can see that we might find ourselves in another sticky dilemma: Do we keep a non-functioning potentially cancerous kidney inside his body in the hopes that it might work again in a few months or do we cut our losses and just remove the damn thing?
Ugh, not fun choices.
The other possible outcome from today’s test (results of which should come sometime tomorrow) is that he falls somewhere between 15 and 30, which means his kidney is still chugging along and would still work in the “outside world,” but that it’s not strong enough to filter out the chemo we’re about to pump through his bloodstream. Hmmmm, then what to do? Forgo chemo — and risk yet another relapse — or jump in and speed up something we hope never happens?
Again, not fun choices.
There may be a chance to do temporary dialysis just on the days he receives chemo, although that’s not standard protocol and not strongly recommended by the oncologists. They think we should stop trying to delay the inevitable and just get rid of it. We’re not ready to do that yet. I strongly believe that he and his body (and his family) need a break, more than two days away from the hospital at a time. And as long as that doesn’t cause obvious harm, we should do all we can to give him that. When does the risk outweigh the benefit? Can we ever really know? God, haven’t we been having this same conversation for the past six months?
Of the many possible results from today, there is only one that is any good: that his GFR has stayed the same, a nice steady number in the low 30s. Not great, but certainly good enough. It may not be the most realistic outcome, but at least we have something to wish for.
On July 31, 2007, our very first night on the pediatric oncology floor, our pediatrician came to visit with me and Mark to help prepare us for what lay ahead. He described the journey we were about to embark on as a marathon, one we had not trained for (except that we’d been training since the moment we became parents), one we didn’t sign up for, but one we had to run nonetheless.
I know a thing or two about running, having completed four full marathons and countless half marathons, including Cleveland’s half this morning. I know that no matter how well-trained you are, there is always something beyond your control, some seemingly small sore spot that can cripple your run. I know that no matter who you train with or start out with or chat with along the way, the race is yours alone and no one else can take a single step for you. I know that you have moments when you feel completely unprepared, cowed by the hill in front of you or the almost endless stretch of road still to come, when you wonder what you got yourself into and how you’ll ever get yourself out of it. And I know you have moments when you feel strong, on a slight downhill, wind at your back, like you can fly, like you can do anything.
Without question, this cancer journey has been our marathon. There’ve been twists and turns we never anticipated, there have been steady even stretches where we get into such a groove we almost forget what we’re up against. There’ve been steep uphills where continuing seemed impossible and bursts of speed to push us forward. And there’ve been fans.
Race fans may not know their impact (and judging by today’s strangely quiet crowds, they may not know how much they’re needed). But fans are a completely necessary component of a long race. Perfect strangers calling out your name and urging you onward, giving you strength and hope and courage, make a huge difference. As do the “fans” we’ve acquired along this journey. You may at times watch silently from the sidelines but we see you there and we know that when you’re really needed, you’ll speak up and cheer us on, reminding us of the strength we already have inside.
This race of ours is certainly not over. We’re due for five days of chemo starting this Thursday, pending the enormously consequential results of tomorrow’s GFR (kidney function test). And then three more rounds of chemo after that, with an estimated finish in early August. We’re more than halfway, which is a huge accomplishment, but just like in full marathons, that last half is always harder than you think.
We’re a little beat down, muscles sore and tired from overuse, chasing an ever-moving finish line. But we’ve been training for years now and we’ve learned an awful lot, and oh I do love to run, so we set our sights a little farther down the road and we dig a little deeper and we let the cheers of our fans lift us forward. And we know that we will finish strong.
Oh, and in case you’re wondering: 1h52m. Strong enough.