What Makes a Great Disease Story?
Brooke: So Jensen says the messaging, filtered through the media, often fails us. That’s because those messages are bound up in scientific and political complexities. But some news stories are deceptively, beguilingly, simple: A child with cancer needs money. You can save him.We’ll hear two of those stories, one this week, one next. This week’s comes from WNYC’s Amanda Aronczyk.
ARONCZYK: All cancer stories start at diagnosis. For 8-year old David Grover, it came in 2003. His jaw hurt. His father, Bryn Grover, assumed it’d be a short visit to the hospital in Fairfax.
BRYN: Yeah, I mean we went in to get him hydrated and didn’t come out for a year and a half, and we were still in and out of the hospital for the better part of two and half years roughly.
ARONCZYK: Once admitted, Bryn shuttled between the hospital, his job at a computer company and raising his three older boys. His wife, Tiffini, essentially moved into David’s room. Her company reduced her pay, reduced her hours, let her go.
BRYN: She only missed one night, I think. Was it two? Two nights they kicked her out of the hospital because she was really sick and I came in and she said, ‘now call me and wake me up in 4 hours’ and I refused to do it and she slept for about 19.
ARONCZYK: And then she was pissed he didn’t wake her. Their son had a grapefruit-sized tumor filling the cavities of his skull, pressing on his throat and obstructing his breathing. Tiffini said the standard treatments, like chemo, were disastrous.
TIFFINI: Where most people, nausea, vomiting. For David, nausea, vomiting and would shut down an organ. His were the normal side effects plus something totally unexpected and that was one of the reasons they didn’t… his prognosis was so bleak.
ARONCZYK: The family was advised to procure a “do not resuscitate” order. Doctors said:
BRYN: Find yourself a gravesite. (PAUSE)
TIFFINI: Sometimes the doctors were assholes.
ARONCZYK: It’s hard to fathom a worse nightmare. But Bryn and Tiffini believe in God, family and a good laugh, probably in that order. They refused to wallow. And David is their kid. When he decided that the hospital’s toys were lame, he didn’t feel sorry for himself. He used his wish from Make-A-Wish to buy games for the other in-patient kids.
TIFFINI: At this time you have this little boy who had given away his Make-A-Wish. Which first of all, to me, that’s outstanding. I mean, a kid can have whatever they want for their Make-A-Wish. And he didn’t want it.
ARONCZYK: The local paper picked up that story. Then one quirky heartwarming story begat another. The Washington Post found out the family was raising money for an experimental treatment in Los Angeles by selling shoes, purses, old jeans on eBay - anything they could affix a price to. Then Tiffini auctioned a bumper sticker…
TIFFINI: Bryn had made bumper stickers. Made five of them. That said Frank Must Die.
ARONCZYK: David named his tumor Frankenstein, Frank for short, hence “Frank Must Die.” eBay wasn’t new, but these were what you might call the ‘experimental years.’ People were selling all sorts of weird things – their souls, their towns, their virginity… And famously, a half-eaten decade-old grilled cheese sandwich with the image of the Virgin Mary burnt into the toast which sold for a ridiculous sum of money.
TIFFINI: $20,000, maybe more. Crazy money. And I’m like, you know what? If somebody’s going to buy a grilled cheese, maybe they’ll buy a bumper sticker, and we’ll get a couple hundred dollars.
ARONCZYK: $28,000 to be exact. Tiffini posted her “Frank Must Die” bumper sticker for 99 cents. She labeled the auction “Help Kill My Son’s Cancer.” But that was not what she was selling, so eBay took down the auction. Outrage ensued. Outrage equaled: more media.
TODAY SHOW THEME MUSIC music stays under next TRAX
ARONCZYK: At this point David Grover had endured two years of chemo and radiation. He could take no more of either, and they did not know if the leftover tumor was cancerous or not. The family faced a choice: get a craniotomy to peel back David’s face to remove the now peach pit-sized tumor, or take their son home, and, quote, enjoy the rest of his time. Tiffini found a doctor in LA who thought he could remove the tumor, through his nose. At this point, David Grover was a leading news item. A Today Show producer told the doctor about David and eBay. He offered to do the surgery for free. They flew to LA and were greeted by a swarm of reporters….
TIFFINI: I mean we’re in LA at Cedars-Sinai Hospital, and everybody who’s an actor goes here I’m sure it’s somebody like Tom Hanks is here. No. It was all for David which was crazy.
TODAY SHOW THEME
ARONCZYK: Post-surgery, the NBC’s Today Show even got exclusive rights to this declaration…
TODAY SHOW: Good morning to everybody, it’s great to have you here. Doctor, walks us through what the prognosis was – you have some good news to share with is.
DOCTOR: We can tell today, that Frank has left the building.
ARONCZYK: David Grover was cancer free! And his family, flown back to LA for more media appearances, were bicoastal cancer celebrities.
ELLEN DEGENERES theme
ARONCZYK: Sitting on a couch beside Ellen DeGeneres, David looked small. His glasses sit on ears that stick out a bit, and he has a crooked smile. In his striped jersey, he looked adorable.
ELLEN DEGENERES: During this time you decided to name the tumor…
DAVID GROVER: I named it Frank ‘cause I was afraid of Frankenstein when I was littler and it helped me conquer my fears. (applause)
ELLEN: So it’s your tenth birthday, and we have a few surprises for you. First of all, who’s your favorite band?
ELLEN: Really? Look!
KISS MUSIC: I WANT TO ROCK AND ROLL ALL NIGHT
ARONCZYK: The band apparently flew in on their own dime. Tiffini says that Gene Simmons gently helped David try on his boots backstage. He brought out the loving “dad” in Gene Simmons.
ARONCZYK: For the most part, the family welcomed the attention. It had been very helpful. But the media had expectations. And demands.
TIFFINI: And we had just gotten back and one of the local news segments wanted to do a follow-up, which was fine. David was – was it this couch? No, the older couch, yeah. Just resting. And the gentleman doing the interview was like, can’t he get up and do something?
ARONCZYK: The family had really opened the doors to the media – the public held it’s breathe in the hospital waiting room; applauded when David was cancer-free… and felt free to dole out “helpful” advice.
TIFFINI: We should give him coffee enemas. Or we should put crystals around him. I mean a lot of quackery came from the media attention. People felt (sigh)… they just wanted to find something to fix what was going on, to cure him.
ARONCZYK: It got… darker.
TIFFINI: We were getting a lot of e-mails saying well you should just take him to Switzerland and let him die. You need to put him down like a dog. You’re exploiting your child so you can take all this money… You gave him cancer.
ARONCZYK: Eventually, they shut down the message board and unlisted their phone number. But on his 12th birthday he could still be seen on the small screen….
DAVID: They said that I’m pretty good, I’m NED.
ELLN: Uh huh. You’re NED. I’m Ellen, how are you? What’s NED?
DAVID: NED means… no evidence of diseases.
ELLN: Oh good! That’s what you’re looking for! (applause)
ARONCZYK: …they were on The Ellen Show repeatedly; she gave him his own name-plated seat. David wanted to be an Egyptologist…
ELLEN: An Egyptologist?
ELLEN: So that you’d have to go to Egypt to do that?
DAVID: Well yeah.
ELLEN: You want to go there?
DAVID: In five years.
ELLEN: What if we helped you go there?
ARONCZYK: A week in Egypt! And wait, there’s more…
ELLEN: $25,000 You Promise college fun, interest bearing account that starts growing right now, and so we’re starting you off with this $25,000 for college… ((A FEW SECONDS OF APPLAUSE THEN FADES TO BLACK, NEXT AX WITH NO AMBI))
ARONCZYK: David is cancer free and has been for years. But he’s having a lot of memory issues. He reads at a fifth grade level. Ellen’s big check, hanging on the wall of the Grover’s suburban home, will stay there.
TIFFINI: I can’t do anything with it. Because it’s in a 529. And a 529 has to be used for education. So it would be great if we could actually use it for David’s jaw replacement, but you can’t take it out unless you want to be taxed and double taxed so it’s just going to sit there and maybe someday we’ll use it for the grandkids if that’s what David wants to do with it, we don’t know. (sigh)
ARONCZYK: The media attention tapered off around 2008...
ARONCZYK: You said that when I called you initially that nobody had been in touch in years?
TIFFINI: No. Nobody.
ARONCZYK: Why do you think nobody had been in touch?
TIFFINI: Because the feel-good story was over. He lived. And people get tired of hearing about cancer or… They just want the good part. Although I have my boy back… the boy that was admitted to the hospital when he was a little boy is not... the same boy that came out.
ARONCZYK: The Grovers say that they were not warned about all the effects – the side effects, the late effects, the many, many effects from treatment. Yes, you’re always consented when you go into radiation, but…
TIFFINI: It’s kind of like when you sign your agreement for your iPhone.
ARONCZYK: It’s hard to process the fine print. But the radiation he received was very aggressive… and he was such a little kid.
BRYN: The radiation has caused him to have cataracts. His jaw is being reabsorbed and will eventually have to be totally removed and replaced with porcelain or a cadaver bone, or titanium, something. You can look at his feet there, and see that he has foot drop and they’re shaped weird, almost like clubbed foot in some ways. So he’s got lots of physical issues.
ARONCZYK: David, sitting on my right, is quietly listening. He still looks a lot like he did when he was on TV, but he’s taller and heavier. His parents do not shield him from these medical details – it’s his life.
ARONCZYK: Has it been rough?
DAVID: It has. I mean, basically it took part of my life away, it took part of my school life away…
ARONCZYK: It took your school life away, because you couldn’t go to school?
ARONCZYK: David is hard to read. In a way, he seems frozen in time, much younger than his 20 years. And his doctor says the radiation he endured more than a decade ago continues to seep into his body and mind, and might make things worse.
ARONCZYK: Did you mind all the attention? Did you get to a point where you were like, eh, I don’t want to do this anymore?
DAVID: A little bit sometimes… I just got tired of it sometimes.
ARONCZYK: Does this feel kind of exhausting by the way to have met with me twice and be telling..?
ARONCZYK: Why not?
DAVID: Because I haven’t done it in a while.
ARONCZYK: Ten years ago, it really seemed like anything was possible for David Grover. He survived against so many odds. With the love of many, he didn’t even know. But the world can’t fix everything. And anyway, it always moves on. It hardly ever looks back.
For On The Media, I’m Amanda Aronczyk.