Son's Rare Cancer Leads Family On Quest For Cure : Shots - Health News When a child falls ill with cancer, many of the drugs that might help are either experimental or unapproved for use in kids.

Son's Rare Cancer Leads Family On Quest For Cure

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From NPR News, this is ALL THINGS CONSIDERED. I'm Robert Siegel. And we begin today with the race against time that so often comes with a cancer diagnosis. It's part of a new series, Living Cancer, from NPR and member station WNYC.

Many adults with the disease have access to experimental drugs through clinical trials. Children usually don't. They typically have to wait until drugs are no longer experimental.

In this story, we're going to meet a mother who wouldn't accept that for her son after she learned about a promising treatment. It's part of a new class of drugs that aim to boost the immune system to control cancer. WNYC's Amanda Aronczyk followed her fight.

AMANDA ARONCZYK, BYLINE: Last spring, Kathy Liu was pleading with several pharmaceutical companies to get access to a new immunotherapy drug for her son, essentially saying, we don't care, we know you're not finished testing this drug, we'll risk it.

KATHY LIU: I told them I understand the policy, I understand the regulation and I understand all the risks, but my child just has no time to wait.

ARONCZYK: By the fall, her 10-year-old son, Joey, was still going to school.

JOEY: This is definitely not my fast time.


ARONCZYK: On this day, he was trying to finish a puzzle before the end of class. There was a piece hiding in the box.

JOEY: Oh, I didn't realize that.

UNIDENTIFIED TEACHER: All right, let's stop and start over.

ARONCZYK: But he could only stay for a few hours before getting tired.

JOEY: OK, I did it, finally.

UNIDENTIFIED TEACHER: Thank you guys for getting cleaned up. You ready? Oh, you did it?

JOEY: Yeah.


ARONCZYK: Joey had been living with an aggressive kidney cancer for over a year and a half. His time was divided between school and Shands Children’s Hospital, the local cancer center in Gainesville, Fla.

UNIDENTIFIED NURSE: All right, Joey. Are you ready?

ARONCZYK: He'd had multiple surgeries, chemo and radiation, and a depressing pattern had set in. His tumors would respond to new drugs for a month or two and then stop.

UNIDENTIFIED NURSE: Forty-four point three pounds.

ARONCZYK: Forty-four pounds is not much for a 10-year-old boy. Joey's small to begin with, and he looked very thin. His outlook was rarely clouded by illness. But I noticed that when he was anxious he would speak with his mother in her native Mandarin.

JOEY: (Speaking Mandarin).

LIU: (Speaking Mandarin).

ARONCZYK: She tried to reassure him.

LIU: It's OK.

He's just worried about his weight loss.

It's OK, honey.

ARONCZYK: After his check-in with the nurse, I asked his oncologist, Dr. Joanne Lagmay, how she thought Joey was doing.

Do you think he has much time left?


ARONCZYK: You think it's a month, five months?

LAGMAY: He's enrolled in hospice right now, so what that means is his life expectancy is less than six months. And he is not the child that I used to know before. He's a tennis player. He plays soccer. He would come to clinic and play the violin for me. Now he just basically sleeps in a chair and just wants to go home.

LIU: I say, no, no, we can't just go home.

ARONCZYK: Her doctor said go home, enjoy what's left of his time. But that could only mean one thing for Kathy Liu.

LIU: For us, that means giving up. If that happened to me maybe I would make the decision we just, you know, go home. But it's my child. I can't just, like, do nothing and go home. I have to try everything.

ARONCZYK: Trying everything included one of several immunotherapy drugs that were still waiting for approval. She'd even gotten 17,000 signatures petitioning drug companies to get access. In the past, information about drugs was mainly available to doctors. Now patients can find out about potential cures online, sometimes even years before they're readily available. There are videos, like this one.


UNIDENTIFIED MAN #1: Miracles happen all the time. You just got to keep high hopes.

ARONCZYK: This young man battled leukemia three times. That video was produced by the Cancer Research Institute. They're a nonprofit dedicated to immunotherapy.


UNIDENTIFIED WOMAN #1: He was my life. I mean, there was nothing else that I could focus on until he was better.

ARONCZYK: Nothing was working. Then the latest in immunotherapy treatment put his cancer in remission. The hope is that he's now cured.


UNIDENTIFIED WOMAN #1: Every day I'm just grateful - every single day.

UNIDENTIFIED MAN #1: I would say I couldn't have done it without her.

ARONCZYK: You see this narrative in a lot of cancer survivor videos - the incredibly resourceful mom, who, with enough pluck and tenacity, helps save her dying child. Sometimes it's even the mom who finds the right treatment just in time. Kathy Liu was an incredibly resourceful mom, and she'd found a really promising drug.

LAGMAY: This drug has never been tested in kids.

ARONCZYK: But Dr. Lagmay was reluctant to give it to a child, even if they could get.

LAGMAY: So it's one of those really challenging things for me as a physician to - you know, I took an oath not to do harm. And I worry, I worry about that at the back of my head because it's a new drug. And we don't even know what dose to start him with.

ARONCZYK: Adults had gotten this drug before it was approved. There had been dozens of research trials, but none for kids.

LIU: I know some adult patients, they are in this trial, like, for three years. Three years, that's wonderful, three years. Like every day I wake up and I'm thinking, oh, I have one day less with him.

ARONCZYK: Childhood cancer is relatively rare. And last fall, drug companies were in a race to get approval for this drug. The last thing they wanted was to be slowed down by expensive and complicated research with children. Then, finally, on September 4, the FDA approves the drug.


UNIDENTIFIED WOMAN #2: The federal government has approved a new kind of cancer drug that is said to have big advantages over chemotherapy...

ARONCZYK: Kathy Liu calls up doctors across the country. Dr. Jim Geller, an oncologist at Cincinnati Children's Hospital, agrees to administer it. He knows Joey, and he thinks it might give the boy more time.

JIM GELLER: I do. I do. If I didn't think that there was a chance that this drug could help him, I wouldn't be delivering it.


ARONCZYK: The family leaves Florida behind. And by October, Joey is an inpatient at Cincinnati Children's.

UNIDENTIFIED NURSE #2: Can I help you?

LIU: It's beeping.

UNIDENTIFIED NURSE #2: All right, I'll send your nurse down.

LIU: Uh-huh, thank you.

ARONCZYK: Every morning a dozen doctors and nurses wheel up medical carts and strategize the day with the family.

UNIDENTIFIED WOMAN #3: OK, so for him today, he's day nine, after his first dose of the PD-1 inhibitor.

ARONCZYK: There's a massage in the morning, followed by math tutoring, a dietitian in the afternoon. A musical therapist comes by to record Joey's heartbeat and turns it into a song.


ARONCZYK: Joey is in a private room decorated with a yellow banner from his classmates. We try out his new Nerf ThunderBow and read "Minecraft" books. I ask him how he's doing.

What do you know about the new treatment?

JOEY: That I'm the first kid probably getting it, maybe? My mom said that to me.

ARONCZYK: Is that exciting?

JOEY: Yeah, and also, if you're the first one, it's sort of like a test.

ARONCZYK: It does make you a little nervous?

JOEY: Sort of, but it's supposed to help me, too, so that's good.

ARONCZYK: His mother is so pleased with his care. It's waiting to see if the drug is working that's the hard part. Sometimes things get worse before they get better.

LIU: So they want to give him more pain medication because he's dying anyway. But I still, I still have hope.

ARONCZYK: Joey's health is getting worse. His stomach is distended, and he's sleeping more. Kathy Liu finds another drug that she thinks might help.

LIU: ...Plus another immunotherapy. It's two together.

ARONCZYK: Dr. Geller says no. He's willing to try new treatments but only if he thinks it will help, not harm. By November, Joey's cancer is so extensive, the doctor worries the boy might die in Cincinnati, far from his friends. He suggests the family go home, but Kathy Liu decides to stay.

GELLER: It would have been completely appropriate, an act of love on her part, to choose to focus on his comfort and his time and being close to home and to family. Those decisions are equally an act of love as it is to choose to try and treat something that, for all intents and purposes, is incurable.

ARONCZYK: That word - incurable. Kathy Liu never uses that word. Her doctors tell her that her son is dying. But the new drug is so promising, giving up has not been an option.

GELLER: I have discussed with Kathy and with families facing similar situations, that it's not wrong to stop treating cancer. It doesn't mean you're giving up on the child. It just means you're putting your faith in a different place. And medicine has its limitations.

LIU: Ready?


LIU: OK, let's go. One, two, three, go.

ARONCZYK: Joey passed away the day before Thanksgiving. Hundreds of people come to the funeral. And after the service, his friends gather outside the church to release balloons. Attached to each string are origami cranes with messages for Joey folded inside. It's really beautiful.

UNIDENTIFIED CHILD #2: Ours is at the top.

ARONCZYK: I sat down with Joey's mother after the funeral, and I asked if she would've done anything differently. At first, she says no, but then she changes her mind.

LIU: Just one thing I regret is I should push more. If Joey can get this drug last year, even just couple months earlier, maybe it would be a different story.

GELLER: Over the 15 or so years that I have been doing this, I don't know many parents that have pushed harder than Kathy did. And I mean that in a positive way.

ARONCZYK: Dr. Geller says the family found themselves in a grey area, between the treatments that were available and the ones just ahead on the horizon. Now, as if this story wasn't sad enough already, here's the worst part - that drug that Kathy Liu desperately wanted, it was working, a little.

GELLER: I think we can say that the rate of tumor growth seemed to decrease on the therapy. It's hard to know what would have happened thereafter.

ARONCZYK: Do you think if he had gotten it earlier, it would have worked?

GELLER: I have no idea. It's too hard to say.

ARONCZYK: By the time Joey got the new drug, his disease was too advanced. It wasn't working enough to save his life, but enough to make his mother wonder: what if?

For NPR News, I'm Amanda Aronczyk.

SIEGEL: Our series Living Cancer is produced with member station WNYC and with WETA, whose documentary, "Cancer: The Emperor of All Maladies," will air on PBS next month.

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