Ten things that are “normal” for a family with cancer that are far from average

image002In August of 2013, my family was on vacation when our middle child Rebecca, recently turned five years old, became ill. She tested positive for strep throat, but her symptoms kept worsening. Three days later, she was on a life flight helicopter to the Children’s Hospital of Philadelphia. She didn’t have strep throat. She had aggressive brain cancer.

The tumor was removed and she underwent treatment. Within a few weeks, she was back to her mischievous, affectionate, merry, irrepressible self. We kept up the treatments back home in Cleveland, but in March of 2014, a second tumor was discovered. We tried experimental treatments, but they didn’t work either. Her last MRI in early June showed the tumor hadn’t stopped growing, and several more were emerging. On June 7th, 2014, her sixth birthday, she died at home, surrounded by family and friends.

I can’t describe what that process was like to anyone who hasn’t lived it. But I can share a few things my wife Kat and I noticed that were unusual—things I feel are common to families like ours, yet far from what we often think of as “normal.”

1. You’re far more aware of the weight of your decisions.

It’s one thing to say that you know all your parental decisions influence your child’s life, and could theoretically be life or death. It’s another to know that the decisions you make are literally, and immediately, life or death. Radiation treatment, or no? Chemotherapy, or no? How much chemotherapy? What kind? Treat with alternative medicine? Which kinds? The weight of all these questions, and a thousand more, are incredible. You know that however confident you are in your decision, you could be wrong. You might choose a path that leads to death, when another leads to life. And even worse, you know that all the paths could lead to death, and so you’re only blindly choosing which route you’ll take to get there. There’s a palpable sense of being directly responsible for your child’s life—both its length and its quality—that is a mixture of terrifying and horrifying. The dilemmas can literally make you feel nauseous.

2. You regret parenting decisions you made before the diagnosis, and struggle with the ones you still have to make.

You make all these decisions about how to raise your kids so they’ll be great adults. And then you find out one of them won’t ever be an adult. Now, all those things you did to encourage their independence and self-awareness, from moving them into their own bedroom to disciplining them for acting out, come back to haunt you. You second-guess everything you did with the best of long-term intentions. Of course you couldn’t have known, and yet, you regret so much. You wrestle mightily with the parenting you still have to do as they die, because you know they’ll never grow up—and yet, you know their siblings will. And so you have to decide what lesson you’re going to teach the children who will (you hope) live on, and how that affects your handling of your dying child. Do they get to do anything they want with no limits? Can they hit others, destroy prized possessions, lash out their anger? Do you let them go wild in their final days? if not, what are you denying a dying child? If so, what does that teach your living children? I’m not saying there’s a right answer to any of this; we made our choices, and have to live with that for good or ill.

3. Sibling rivalry takes on a whole new dimension.

Rivalry between siblings is natural. But when a child has a life-threatening condition, and when they’re dying, they become the center of attention for everyone. Their siblings become marginalized, which upsets them, and which makes them mad at their dying sibling. Which makes them guilty and remorseful and self-critical, if they’re old enough for that, which in turn drives more resentment. We tried to keep them from being marginalized, we tried hard, but it could never have been enough. Not because they’re too greedy, but because there weren’t enough hours in any day to do what Rebecca needed and also make our other kids feel like they were the center of attention. It just wasn’t possible. People came to visit us to see Rebecca first, not them. People did us favors and gave us support because of Rebecca, not them. Make-A-Wish granted Rebecca’s wish; nobody even asked them their wish. And of course their greatest wish was also the greatest impossibility: a cure for Rebecca’s cancer.

4. You discover a vast asymmetry in support resources.

There are charities and foundations and support groups and services galore for families who have an ill or dying child. There are almost none for families whose child has died, and fewer still for the children who survived. Make-A-Wish doesn’t come back to grant a wish for the children who had to watch their sibling be buried. (This is why my wife and a friend established Rebecca’s Gift, a non-profit dedicated to providing healing family trips after the death of a child.) Hospice services almost never offer post-death grief counseling, even assuming they have pediatric hospice services in the first place; we’re incredibly fortunate that our service, Hospice of the Western Reserve, has both. For most people, they’re lucky to have access to one.

5. The blindness of medicine.

You suddenly realize just how much of medicine is guesswork, the result of trial and error. Conventional or alternative, doesn’t matter. You get a lot more data with conventional medicine, but a lot of it just tells you how little we really know. A cancer type has this mortality rate, and these types of treatments were tried and had slightly different mortality rates among those who tried them, but nobody knows why. It was for this reason that we worked with St. Baldrick’s to create a research fund in Rebecca’s name. With alternative medicine, you get no data, but a lot of very confident assertions—and you realize how little those making the assertions really know. It’s all guesswork. And there you are, thrown into the role of guesser, trying to guess right in a blizzard of facts and assertions and trying to catch the one snowflake that holds the magic, always afraid none of them have any magic at all.

6. Related: you get a lot of unsolicited miracle cures.

If I went back through all my email and Twitter messages and Facebook messages, and pulled out every one that told me about some miracle cancer cure, I’d have a list longer than both my legs put together. Every kind of idea, a notable fraction of them related to cannabis (but almost every one a different form or administration), and every one bolstered by “my friend’s aunt used this and her cancer went away” or “my boss’s stepbrother did this and stopped the cancer cold” or what have you. All data sets with an n of one. I understand that people were trying to help. I can even, on some level, appreciate that. It was hard not to see the selection bias, though. Nobody ever mailed us to say that their sister’s ex-boyfriend’s cousin had tried such-and-so, and it hadn’t worked and he died. I kept thinking of a relative of mine who decided to treat cancer with a high-dose vitamin C regimen, and was dead in less than six months. At one point, a friend sent us a CD with “anti-cancer music” that used subliminal directed focus messages or some such to stop the tumor growth. It was harmless enough, and Rebecca liked the music, so we played it at bedtime and while she slept. The tumor grew anyway.

7. You get hyperaware about vaccination status.

As the parent of a child with cancer, the treatments for which are often damaging to the immune system, you become even more aware of the necessity of herd immunity. Rebecca was, for all practical purposes, like someone who has a vaccine allergy and can’t be vaccinated. There was the possibility that an unvaccinated friend or classmate could infect Rebecca and kill her before the cancer had a chance to—although, of course, at the time we were worried about that, we thought the cancer might not come back. We had to tell everyone who wanted to visit, or to have us to come visit them, that they had to be vaccinated against the flu, and have their TDaP up to date (for the P, mostly), before we could see them. It wasn’t something we wanted to do, but the alternative—to cut Rebecca and ourselves off from all human contact—seemed to great a price, especially for Rebecca. If her days were limited, we wanted them filled with as much love as possible. So we took the chance, but we still worried.

8. You realize how invisible so many struggles are.

Four days before Rebecca died, we took her to an ice cream shop to meet with some friends. She walked between me and Kat, holding our hands, in what was by then a rare burst of energy. She sat in a chair by the wall, alternating between smiles and nose-tweaks and staring blankly off into space. She had some ice cream for the last time. But if you had just walked in to get your ice cream and glanced over at us, or even spotted us as we walked in, there would have been no way to know she was days from death. Nothing about the situation marked us as a family going through the worst moments of our lives.

9. You realize how deeply denial runs.

Repeatedly, we asked Rebecca’s school administration to inform the entire school staff—including any volunteers—about Rebecca’s situation and how it affected things like playground scrapes or sudden exhaustion. They never did. We asked people to come see us for holidays, or out to dinner, and sometimes even said directly: this could be the last time. This might be the last Christmas you can share with her. This might be her last birthday party. This might be the last time she can play in the yard with you. This might be the last dinner she ever eats. So many said no. And Kat and I would wonder, Do they not understand? On the flip side, so many people would say things like, “She’s so bright and full of energy and so very loved, there’s no way she won’t beat this.” Or, “This treatment has to work, so it will.” And Kat and I would wonder, Do they not understand? Maybe they did, and were just trying to make us feel better. But I think a lot of people just can’t accept the horrifying truth, and assert without basis that things have to work out okay, because reasons. Because they don’t want to think about a world where there’s no way to save a five-year-old’s life.

10. You learn to live with utter helplessness.

You’re always aware that your efforts, however right they seem, however much promise they have, could all be for nothing. The runaway biology lies so far outside your ability to affect that it can be a titanic struggle just to feel any hope at all. It feels like one of those dreams where a tsunami approaches in slow motion and you stand rooted on the shore, unable to run or even look away. We planned out courses of treatment and every moment knew that it could all be for nothing. In one sense, it was. In another sense, it wasn’t for nothing, because she always knew we were doing everything we could to save her. We were grateful to be able to show her that, and yet, it did nothing to alleviate the grinding sense that there was nothing we could do except hope.

That was probably all a big downer, but unfortunately, that’s how it goes. This is not to say there weren’t moments of joy and grace: there were. They just weren’t outside the norm. The moments of laughter with our children, the trips and experiences we shared, the support of family and friends—these are all pretty normal. They were just heightened in their contrast with the circumstances. And maybe that’s the last thing that was far from normal: you learn to appreciate and savor those moments in a way you might not have, if you hadn’t seen them silhouetted so painfully sharply against such a difficult backdrop.

[About the author: Cancer stole Eric Meyer’s daughter, Rebecca, away from this world at age 6, which shaped his devotion to advocating for pediatric cancer research funding through the St. Baldrick’s Foundation. From the day of Rebecca’s diagnosis, Eric was told there was no cure, which led him to creating a research fund focusing on glioblastoma research in Rebecca’s name through the St. Baldrick’s Foundation, a volunteer-powered and donor-centered charity dedicated to raising money for children’s cancer research through signature head-shaving events.]

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