It's early in the morning and 20-year-old Aaron Reid looks like he's sleepwalking.
His head nods forward and he shuffles a bit as he heads toward the pediatric clinic at the National Institutes of Health Clinical Center.
Reid, who has been fighting leukemia since he was 9-years old, is experiencing intense pain.
He can't say much at the moment, so his mother, Tracie Glascox, speaks for him. "He's been complaining of pain in his ankles, his knees and his arms," she tells the nurse.
The pain could be a bad sign. It could mean that an experimental treatment Reid is betting on hasn't worked to control his cancer. Instead of curbing the leukemia, the cancer may be continuing to proliferate.
By that point, he'd tried pretty much everything from radiation and chemotherapy to a bone marrow transplant to make the cancer go away — and stay away. Nothing worked for long, however.
The clinical trial Reid signed up for was designed to test the safety of a CAR-T therapy in which a patients own immune system cells are genetically engineered to go after cancer. Some people refer to it as a "living drug" because the treatment is made from a patient's own cells.
The Food and Drug Administration has already approved other living drugs to treat some children and young adults with leukemia and certain adults with lymphoma.
In Reid's case, 17 million of his own immune cells were engineered to recognize two targets on the leukemia cells instead of one. Doctors hoped this modification would increase the chances the cells would successfully find and attack the cancer.
Reid is back at the NIH hospital to find out if the treatment is working. To do so, he needs two tests.
Unfortunately, he's in too much pain to withstand the first test, a PET scan.
Instead, nurses give him pain medication and hope he'll be able to get the scan the next day.
"They said they're going to be admitting him for pain management," Reid's mother says. "It's real important to know what's going on with Reid and why he's having all this pain."
The following day Reid looks like a completely different person. He's energetic and smiling. Most of the pain, except for a little in his arm, is gone.
"It's a lot better than yesterday," Reid says. He easily gets through the hour and a half it takes to complete the PET scan.
The next day he had a bone marrow biopsy. Finally, it's Friday, and the moment he and his mother have been waiting for: When they'll find out if the treatment has worked.
The researcher in charge of the study, Dr. Nirali Shah, a pediatric oncologist at the National Cancer Institute, walks into Reid's hospital room.
Reid is wearing tan jeans and his sunglasses are propped on top of his head. He perches on the side of his hospital bed while his mother sits quietly nearby.
"All right," Shah begins, "There absolutely is evidence that some of the areas of disease involvement that you had are gone."
The cancer has disappeared from parts of Reid's body, including his bone marrow. Also, the genetically modified immune cells are still evident in his body, she says, so they could continue to "attack the leukemia."
That's the good news.
But the pain Reid was struggling with earlier in the week turns out to have been an indication that in other areas his disease has worsened.
The leukemia has continued to progress, which shows the living drug only worked a little.
"Based on your PET scan results, we know that it's not enough," Shah says. "Our hope would have been that we would have seen no signs of progression. And progression is really the pain that you were having. So it is a mixed response."
Shah is quick to add that this is not the "end of the road" for Reid. There are other therapies he can try.
In the meantime, he's cleared to do the one thing he wants to do most of all: return home.
"At least some of the cancer is gone," Reid says. "That's awesome. Less cancer is always better than more."
Shah says for a Phase 1 trial, the early-stage study that aims mainly to assess a drug's safety, Reid's results were helpful. The dose doctors used didn't appear to cause harm. That's encouraging for the researchers who want to continue to test the treatment and to tweak it, they hope, so it will work better on patients with Reid's type of disease.
STEVE INSKEEP, HOST:
Let's follow along now as a man with leukemia finds out if an experimental treatment is working. Aaron Reid was on this program a few weeks ago. And now we check back again as he finds out results of a new therapy called a living drug at the National Institutes of Health. Here's NPR's Rebecca Davis.
(SOUNDBITE OF RUMBLING)
REBECCA DAVIS, BYLINE: It's early in the morning. And 20-year-old Aaron looks like he's sleepwalking. His head is nodding toward his chest. His feet shuffle as he heads towards the pediatric clinic at NIH. His mom, Tracie Glascox, says Aaron woke up that morning in a lot of pain.
TRACIE GLASCOX: He's been complaining of pain in his ankles, knees and his arms.
DAVIS: Aaron's supposed to be getting a PET scan today, one of the tests he'll need this week so doctors can tell if the experimental treatment he's on is working.
GLASCOX: The PET scan requires him to sit still for a long time. And he doesn't feel like he can sit still unless he gets something to treat the pain.
DAVIS: Aaron goes into an exam room and lies down. His face is pale against the green blanket. It's a worrying moment. All that pain could mean Aaron's cancer is not responding to the treatment.
(SOUNDBITE OF PLASTIC CRACKLING)
DAVIS: A nurse comes in to give Aaron an injection of pain medication.
UNIDENTIFIED NURSE: Let me see your line real fast.
DAVIS: When Aaron came to NIH, cancer was pretty much all over his body, this after 11 years of doing everything he could to control his disease. With few remaining options, he and his mom were really pinning their hopes on this experimental treatment. It's called a living drug because doctors use a patient's own living immune system cells that have been genetically modified to attack the cancer. It's worked really well in people with certain types of leukemia and lymphoma, but the cancer often comes back.
So Aaron's doctors tried something new - a different living drug they hoped would work better. That was about a month ago. And if the therapy is working, if those genetically-modified cells are doing what they're supposed to, doctors say Aaron's cancer should be coming under control by now. But because he's in so much pain, they're not going to be able to do the PET scan today to find out.
GLASCOX: They said they're going to be admitting him for pain management. It's real important to know what's going on with Aaron and why he's having all this pain.
AARON REID: OK.
DAVIS: The next day, Aaron is like a different person.
REID: It's a lot better than yesterday.
DAVIS: He does still have some pain.
REID: Actually, today, the only thing that bothered me is my arm.
DAVIS: But he handles the PET scan with no problem. Next, he gets a bone marrow biopsy. And finally, on Friday, the moment he and his mother have been waiting for - when they find out if the living drug is working or not.
NIRALI SHAH: All right.
DAVIS: Aaron's doctor, Nirali Shah, walks into his hospital room. Aaron perches on the edge of the hospital bed. He's wearing tan jeans, and sunglasses are propped on his head.
SHAH: So it's been a few days since I've seen you. We got a little bit of...
DAVIS: He and his mom listened intently to Dr. Shah.
SHAH: ...Correct. There absolutely is evidence that some of the areas of disease involvement that you had are gone.
DAVIS: That's good news. The cancer has disappeared from many parts of his body. And she tells him the genetically-modified cells they put into his body are still there and could keep attacking his leukemia. But - there is a but.
SHAH: Based on your PET scan results, we know that it's not enough because our hope would have been that we would see no signs of progression. And progression, I think, is really the pain that you were having, so it is a mixed response.
DAVIS: Bottom line - the living drug worked a little but not enough. Aaron still has leukemia. And while that's hard to hear, Dr. Shah is encouraging. There are other therapies he can pursue.
SHAH: This absolutely is not the end of the road.
DAVIS: She asks him, do you understand?
REID: I understand that, you know, the cancer is not gone but is reduced, which is awesome to me. I mean, having less cancer is always good. I understand that, you know, we will need more treatment 'cause there's never, you know, end of the road.
DAVIS: While Aaron's results aren't what he hoped for, they do tell Dr. Shah something important - that the dose they used is safe, which means she can continue to test this living drug, tweaking it, so hopefully, next time, it will work better for patients with Aaron's type of disease. Rebecca Davis, NPR News, Washington.
(SOUNDBITE OF SLEEPDEALER AND GUDO REWINDS' "LIKE SILK") Transcript provided by NPR, Copyright NPR.