Blind Choices
Published 10 years, 6 months pastIt’s the nature of cancer and its treatment that there are often incredibly difficult decisions to make on very little information with no real idea of the eventual outcome.
Once conventional treatments for cancer (or any other life-threatening illness) fail, you enter a realm with no landmarks, full of apparently identical paths, and you must choose one. Or else refuse to choose any, and so wait for death to catch up. Because past chemotherapy and radiation, there are experimental studies, alternative remedies, and so on. One of them might be the path to long life and health, but there’s nothing to distinguish it from all the others. And it’s entirely possible that none of the paths lead anywhere but a quick death, some more painful than others. And there’s still nothing to distinguish one from another.
So many paths, all looking exactly alike. Choose one.
We’re facing a particularly difficult decision soon. Rebecca qualified for a Phase I clinical study of a novel treatment. It isn’t chemotherapy, but a whole different class of drug. To quote (with a minor edit) the Sloan-Kettering Cancer Center:
Many cancer cells have a protein called p53 that does not work properly. This protein normally puts the [brakes] on rampant cell growth, and when it does not function well, cells can continue to grow uncontrollably (as cancer cells do). The p28 drug is designed to find and kill cancer cells with dysfunctional p53.
The major advantage is that p28 isn’t anything like chemotherapy; thus, it doesn’t have the toxic side effects of chemotherapy drugs, though apparently some patients do get nauseous from the infusions. It’s basically a genetic therapy, in the sense that the treatment is designed to address a particular genetic situation. It doesn’t interfere with other systems, like the immune system or bone marrow. Not so far as anyone knows, anyway. It’s always possible the study could show otherwise.
We’re in this study because the genetic analysis of her tumor last fall indicated a “p53 deletion”. Thus, drugs meant to address p53-related problems are a first choice. In theory, p28 could completely halt the growth of her tumors.
In theory. In practice, miracle drugs are never totally miraculous — every type of cancer is its own distinct thing, and every patient responds differently. The upshot is that there’s no way to know if her tumors are being affected by the p28 drug without doing an MRI. The doctors leading the study arm in Pittsburgh want to do an early MRI, six weeks into the study instead of 12, to see what’s going on.
If we do the MRI and the tumor is essentially unchanged from the start of the study, then it means the drug is working. In that case, we continue the treatments while we try to figure out ways to cause the tumors to shrink, either through careful surgery or other experimental treatments. Kat’s been researching options along those lines, since she’s the one with three advanced-practice medical degrees and a Doctorate of Nursing.
At the other end of the spectrum, if we do the MRI and it shows the tumor is growing just as fast as before, meaning the p28 isn’t working at all, we would withdraw from the study, because the time we spend going there and back for treatment is wasted time.
But if we do the MRI and it shows too much continued growth, even if it’s a reduced rate of growth, then she will no longer qualify for the study. Some growth is acceptable under the study protocols, but too much — even if it’s less than would have been the case without the drug — is not.
We don’t know what the odds are for these outcomes. Rebecca is part of the first p28 study ever done in children. And there haven’t been that many p28 studies in adults. There is nowhere near enough data to tell us what the odds of success are in general, let alone for her specific type of tumor, let alone for tumors of that type in patients with her age and gender and ethnic background.
If we scan sooner, at six weeks, two out of three outcomes will mean she exits the study and the tumor continues growing at its pre-study rate. One of those two would mean exiting the study even though there was some benefit, simply because there wasn’t enough benefit. The third outcome is the best case, the one where she stays in the study because it’s working.
If we wait to scan at twelve weeks, and the tumor is growing unchecked, it could very easily kill her before we get to the scan. We would spend all those hours in the car for nothing. Or she could have too much growth and be disqualified. Or the growth could have stopped.
These are the blind gambles you take, the excruciatingly difficult dilemmas you face, as the parent of a dying child. Do you find out what’s happening sooner, even though it could mean you hasten her death, when not finding out might have meant she’d live longer? Do you wait to find out what’s happening, even though that could mean you waste six more weeks, and you could have used those six weeks to try to find another treatment, one that might actually help?
And even if you look sooner, and as a result you find out that another treatment is needed, you don’t know what other treatment will actually help. Maybe none of them will. The choice is real enough, but the implied promise — that the right choice, if you can somehow manage to find or luck into it, will lead to a cure — may be, almost certainly is, an illusion.
I don’t know what choice we’ll make. I still haven’t worked out how to come to a place where I can live with whichever choice we end up making, should the worst outcome of that choice come to pass. I can’t even take refuge in not choosing, since that is the same as choosing to scan later instead of sooner.
Events will not wait for me, of course. Soon enough, the choice will have to be made, one way or the other, whether or not I’m ready, whether or not I’m prepared to live with the consequences.
The only thing I think I do know is that I wouldn’t be able to live with myself if I refused to make a choice. Right or wrong, good or bad, this is part of what I volunteered for when I became a parent. Taking that role meant taking responsibility for the lives and welfare of my children. Now Kat and I must take direct responsibility for the life and death of our child, and if we must choose blindly, we will keep her firmly in our sight as we choose.
Comments (17)
I had Kidney cancer, my mom had stage 3 colon cancer so everything I read here hits close to home and I think that everyone will agree that you should try anything to give her at least one more day. I read and follow you because of web development but cry with you as a parent and cancer survivor. Stay strong and I wish the best.
What is the rationale for dismissal from the study if the MRI shows reduced growth rate but still growth in excess of some rate defined in the study protocol? If the MRI at 6 weeks is sort of “doing the researchers a favor,” it seems like they ought not eliminate anyone from the study who shows ANY benefit.
The worst case is likely always in your mind. Perhaps you can let yourself think there might be multiple paths to a place that puts the worst case farther in the future.
Your last paragraph is maybe the most enfeebling one I’ve seen you write about this yet; how can you be “wrong”, when your one goal is to act solely in the best interests of your daughter? There is no fault to be assigned when the only purpose is to give a little girl a shot at life.
The motto of the British SAS is “Who Dares Wins”. Whatever your choice ends up being, I wish you and your family the very best. I almost feel ashamed that this is all I can offer – feeble encouragement. From where I sit, the universe owes you a big favor, and may this chance be that favor.
Hick: welcome to the world of Phase 1 studies. Treatments have to be obviously efficacious, because otherwise it’s impossible to tell if the slowed rate of growth has anything to do with the drug or not; cancers do not always grow in linear fashion. And if the drug isn’t obviously effective, it’s better to let the patient look for something that works better than keep them on a drug that might be no better for them than saline solution.
kilahcup: A wrong choice would be one that we later realize shortened her life, or made the quality of it worse, or both, as compared to other choices we could have made.
It’s easy to proclaim that there are no wrong choices if they are made with love, but believe me, when you know that some of your choices could bring your child’s death about faster than other choices, it’s very difficult not to see them as wrong. “Fault” has nothing to do with it. And while some who dare do indeed win, many others dared and died, or worse.
Thanks, Eric, for that clarification.
Are you at or very near six weeks now? Would knowledge gained from the MRI help you or rob you of hope? That probably depends on what the scan shows. I can’t imagine being in your situation. I think I’d choose the early MRI and knowledge because knowing does not change the facts. Knowing the facts can change your choices, though.
I think about Rebecca every day.
You may never know ultimately which is the “right” or “wrong” choice. To be able to make a choice at all is a chance not everyone gets – whatever choice you make will be the “right one” because you made it. Choosing keeps you an active participant in Rebecca’s care, and it means not giving up. There are things you may never know, and 20/20 hindsight can be scary. You can only choose based on what you and her doctors know now. Don’t let fear paralyze you (easier said than done, I know.)
She will never have to leave the study because of the choice you make but the lack of evidence at that point in time, a fact that the drug is not working. Sadly children die of cancer and there is nothing parents can do to stop it. If a child dies of cancer she doesn’t die because a parent has failed to make the right choice, it’s because cells are mutating, nature is failing the body. Your family has already made so many right choices by communicating to your children, raising awerness and considering her needs. Putting your childrens’ needs first and accepting that she might be dying is no sign of weakness or defeat. People who die of cancer are no loosers, but yet we use those words; battle, fighting, bravery. Cancer sucks, it’s misery and helplessness to relatives and sufferes. Incredible motivational speech by a young man who passed away this Wednesday: http://youtu.be/epaU63RGhUs
Eric, you and Kat have earned my respect as two of the best human beings and parents on this planet. I follow your updates but any life experience I have bears little resemblance to what you’re going through; I can hardly imagine being in your shoes. That said, I know that the careful thought you have invested in making every decision and in sharing every piece of information. We, your extended Internet family, will always stand by your sides and, should you need it, remind you of your valiant efforts to save Rebecca’s life.
Thinking of your family, always.
Eric, you wrote:
“when you know that some of your choices could bring your child’s death about faster than other choices, it’s very difficult not to see them as wrong.”
But your choices are not going to “bring about” her death because nothing you chose ever caused the cancer in the first place. It’s not as if you’ve chosen not to use a car seat while driving drunk, for example, but rather that you’re making (as you say) limited choices in a bad situation where the outcome might not be to prolong her life — but you’re not hastening her death. Because the cancer itself was never one of your choices to begin with.
I know that’s a semantics thing, but as a bereaved parent myself, I wanted to ask you to turn that around. Nothing you did could have caused this, and therefore nothing you choose at this point is making it worse. It’s still a very important choice, but you’ve fully taken responsibility for guiding her through this time and making the best decisions for her that you can.
Jane, the key to that passage is the word “faster”. Not “bring about”, but “bring about faster”. Maybe some can see having chosen in a way that hastens her death as not-wrong, but I’m not among them.
I won’t blame myself for the outcome, but I will have a great deal of additional regret, if the choice we make further shortens her life. Even I have limits to what I can let go of.
This has got to be expensive. How can I help? If I missed it, please forgive me, but is there a fund online?
Your openness with this community brings perspective, strength, knowledge … inclusion. I am a praying person and continue to remember your family every day.
No advice from me. The weight of these decisions sounds unbearable—except, as you know, there’s nothing you can do other than bear them. And sometimes modern medicine puts us in places that seem more difficult than our emotions and thought processes were built to handle. I was in the past, and am now, the “researcher” for close family members, and even digging into the research can be too much when it’s not abstract, but, rather, all too real. It’s more than painful; I wanted to vomit as I’d read the words in all those studies. But I had to read them because an answer, even a temporary one, might be there. To be in that role as a mother is unthinkable to me. My heart goes out to Kat and to your whole family.
If you have the wherewithal to reply, is this a monoclonal antibody they’d be administering?
I don’t know the answer to any of this, but here are my thoughts. It seems to me that knowledge is power. Knowing sooner rather than later that a treatment is not working, if indeed it is not working, gives you the power earlier on to change course. Neither you nor Kat strike me as wanting to waste time in Pittsburgh in blissful ignorance if the treatment isn’t working. Hopefully the treatment IS working, so this is all moot. But then there’s that intermediate possibility – the treatment is working, but not working “enough” to stay in the trial. Maybe they would let Becca continue to get the treatment “off protocol”, until you find another trial. It’s something to ask them about, as soon as possible. When I faced some of these questions with Abby when she went through her cancer treatment, questions with no real answers, questions that put parents in an unbearable place to be, my husband and I decided that whatever the outcome, we could never second guess what might have been – had we chosen a different option. Easier said than done, I know. Throughout her treatment, we lowered the dose of some of the chemotherapy agents and even declined giving her some of the chemotherapy, when we thought it was too toxic. She had a very hard time with the chemotherapy. And then there’s that balance – if we don’t give it to her, maybe she’ll die – but if we do give it to her – maybe she’ll die. Or maybe she’ll live. All you can do is keep pushing forward, which is exactly what you’re doing. Hope this is helpful.
Steady Eric – I’m going to say something that is real easy for someone over in the viewers box and not in the arena, and that is: be careful over-thinking the issue. You’ve eloquently and meticulously explained the issue and dilemma; but, I suspect that the biggest portion of the dilemma you feel is the fact that none of the options are “win.”
There are ways of making decisions with “insufficient data” (in fact whole algorithms) but to translate those into human terms is impossible. Decisions can be easier when there is a more clear delineation of valence – even if it something like an adverse effect of treatment. In this case, as you’ve said, there are little if any ill effects; which “grey’s” the data and is probably making your decision miserable.
I’m taking a chance that a couple of extra thoughts might aid a little: Go through your decision tree again not even thinking about items which you can judge are completely uncontrollable. That sort of changes to a “side-view” and sometimes helps. Do it again only looking at aspects that are truly in your control. Seeking medical care – yours; driving for care – yours; tumor growth – not yours; study design – not yours; etc.
Secondly, from the doctors side, they will NOT be motivated to cease participation earlier than there’s even a reasonable possibility for improvement. Cases are difficult to find on this issue and there is no advantage to them to cease participation without cause. Let THEM make that decision. It will not be easy for them. Tell them your fear and consideration and let them explain rational for the study design if you think the discussion would be helpful. The various “arms” or paths of the study — you can take that out of your considerations, not your decision.
Thirdly, it sometimes help to re-evaluate the valences of assumptions – for example, would you really beat yourself up over spending driving time? In the long run?
Fourth, are their any “opportunity costs?” You haven’t mentioned any treatment options you’re forgoing due to this treatment. Is there really anything that you’d rather or ought to be doing?
And, when decisions seem impossible, it sometimes helps to pull way back into your belief system, long term. For example, consider what a conversation with your daughter would be like as two mature adults. (You’ve always known in your heart that a parent only “borrows” a child for a short moment as a “caretaker” of sorts). It really even doesn’t matter about how you can “live with yourself.” As long as a parent has done all they could do, with the right intent and as caring as they can be — truly, who can expect more.
Hang in there son, from all that I can see you’re doing the right things, as complicated and as soul-wrenching as they are.
One more thought – I agree with dj. The doctors in the study are really not going to want to stop the treatment if there’s any improvement – I’ve run clinical trials myself. I don’t know what metric they’re using to measure improvement – I assume they’re going to look at the MRI scan and measure the tumor burden – there can be different ways of measuring tumor burden, and different people looking at the same scan can see slightly different things. And yes, many people have written many books on decision making. But in this situation, your gut instinct will tell you and Kat what to do.
Just saw your tweets announcing the news of the results. So, so unbelievably happy for you all. It is beyond incredible to hear the treatment is working.