by Michael Vuolo
NARRATION: As if the day wasn't bad enough ... it got worse for Rick Gioia.
TAPE: RICK: I said to somebody on 9/11/01 in reaction to what was going on in the world, I said gee, life will never be the same after today. I didn't know how much I would really mean that because when I got home from work, that's when all this happened with Nicole...
TAPE: NICOLE: I couldn't lift my shoulder past a certain point and there was a lump there. I said to my teacher I am having pain, I can't raise my arm and it really hurts and I asked if I could go to the nurse and she said don't worry about it, go back to your seat. She thought it was a mosquito bite.
TAPE: RICK: At this point we weren't panicking. We were just like it's a lump ... lumps aren't good but she is a kid.
TAPE: NICOLE: ... my dad felt the lump, which I was in a lot of pain and he couldn't really touch it without me screaming...
NARRATION: The Gioia's took Nicole, who was 10 at the time, to an emergency room radiologist ... a second x-ray the next day showed a 4½ inch tumor in her chest.
TAPE: RICK: We're scared ... we don't know what's going on ... we saw the x-ray ... but still not fully registering ... then when they said we are going to send down an oncologist to speak to you that was the realization that we are in trouble here.
TAPE: NICOLE: I had never ever heard the word lymphoma. I used to watch Lifetime a lot and they had cancer stories and all that. I had no idea that this was what I was dealing with.
NARRATION: What Nicole was dealing with was cancer of the lymphatic system ... a system that includes bone marrow and lymph nodes. Because these nodes are scattered throughout the body ... a cancer can start ... and spread ... just about anywhere ... and there is no known cause. Doctors determined that Nicole has a form of lymphoma known as Hodgkin's ... which is typically treatable ... or in medical lingo ... chemosensitive. For Nicole, chemo started immediately.
TAPE: RICK: Everything is going a million miles an hour and ... you want to be able to stop time. You want to say wait a minute, wait a minute, everything please stop, this is my baby and ... you just want to be able to say no, no, this is not happening.
NARRATION: Chemotherapy kills off rapidly dividing cells ... including cancer cells, hair cells and ... unfortunately ... important white blood cells that help fight infection. It's a calculated risk and ... at first ... it worked. Within months Nicole was in remission.
TAPE: NICOLE: Life was normal ... my hair was growing back ... I was with my friends ... I was having fun ... I was back to my activities, back to tae kwon do, back to being able to do everything that I wanted to do ... and then a couple of months later I relapsed.
NARRATION: The cancer came back, only now it had spread to Nicole's lungs. Doctors gave her what they called industrial strength chemotherapy. One doctor described it to the Gioia's as wiping the hard drive of a computer.
TAPE: RICK: She went through a month of pure hell. She was spitting up and coughing up parts of herself. She had at one point 15 different IVs running through her ... no complaints. When she got up to go to the bathroom, she didn't even want help.
TAPE: NICOLE: I don't like to ask for help that often. I want to do it on my own. If I want help I'll ask for it ... but I didn't want anyone to say "Oh, here, let me do this for you" or "Oh, here, let me do ..." I could do it myself.
NARRATION: Again, the remission lasted only a short while ... in late 2002 Nicole relapsed a second time ... in order to get her back in remission and hopefully keep her there, doctors put her on a two year regimen of chemo here at the Memorial Sloan-Kettering Cancer Center in Manhattan ... where today 25 or 30 children ... from toddlers to teenagers ... mill about the pediatric unit. Nicole is wearing pink sweatpants, a pink T-shirt and a red bandana ... she starts a new chemo cycle early in the morning ... a nurse rubs and then taps her arm, searching for a good vein ... she prepares to insert the IV ... cartoons play on a video screen nearby ... for six hours the toxic chemo drugs drip from an IV bag into Nicole's arm. Over the next few days she battles nausea and pain. She loses her ability to ward off infections and she loses what little hair has begun to grow back since the last cycle. One medication relieves the symptoms of another...
TAPE: NICOLE: If I'm nauseous I take Adavan or Viterol or Kytrol or Zofran. My morning pills are folic acid and a cyclovir three times a day which I kind of only do two, and bactrum, which is Monday, Tuesday and Wednesday twice a day. Zirtex for allergies. And then if I am in pain I take Tylenol with Codeine and if it's really, really bad, I take Percaset and if it's not that bad, I just take regular Tylenol.
TAPE: SONNENBLICK: The cure rate on Hodgkin's is very, very high ... unfortunately Nicole fell into that small percentile that doesn't do well...
NARRATION: Betsy Sonnenblick is the Nurse Practitioner who took care of Nicole when Nicole was first diagnosed.
TAPE: SONNENBLICK: ... and then they usually ... the first thing to do if someone relapses is to give them their own stem cells ... which she already had ... so now they're going the next step.
NARRATION: Doctors would like to wipe Nicole's hard drive again with more industrial strength chemo and ... this time ... transplant stem cells from the bone marrow of someone else ... sort of like installing a new operating system ... [begin AMBIANCE of blood drive underneath] Stem cells are like seeds ... without them Nicole would not be able to regrow her immune system after such a high dose of chemo ... in which case the cancer would be the least of her immediate problems. This transplant may be Nicole's best shot at beating the lymphoma ... so she's now searching for a bone marrow donor ... which is not easy to find. A restaurant in New York recently hosted a blood drive for Nicole and two others, including her friend Jesse. Diners are eating lunch downstairs while Nicole greets potential donors on the second floor. [Post sound of Nicole: "Fill out this form ... there are pens on the table ... and then you go to one of the people over there."] Marrow, like blood, has a type only it's much harder to find a match. Only 30 percent find one in their own family. Nicole is in that other 70 percent ... she's looking for one person ... who may or may not be listed in the national bone marrow database or registry. More likely that person doesn't even know about the database ... the efforts to collect blood and to register marrow type are completely separate and not at all coordinated ... for many parents of children with cancer ... like Jesse's mother ... this doesn't make any sense.
TAPE: JESSE'S MOM: I thought when I donated blood I automatically went on a registry ... you know it's a shame because there needs to be education ... how many parents sitting there all day long while their kids are getting treatment wouldn't run downstairs and go on the registry if they knew
that that's what they could do.
NARRATION: There is simply no system set up by which people who donate blood are given the option to register their marrow type. Less than two percent of the U.S. population is in the database. Of those five million ... none are a match for Nicole. Eventually Nicole's chemo options will run out ... and so finding a match is a race against time.
NARRATION: It's 4:45 a.m. at the Gioia home. Nicole's mother, Denise, is emptying the dishwasher. A calendar on the refrigerator shows a capital C below Nicole's name on the days when she receives chemotherapy. And one day every several months ... like today, April 21st ... there is an S below her name. Today she'll get two scans, a PET scan and a CAT scan ... to determine if she's still in remission or if once again ... the cancer has come back.
TAPE: RICK: Getting the tests is one thing ... then waiting for the results ... the moment you leave that hospital ... it's the apprehension of waiting for the results ... and when the phone rings it's like a panic...
TAPE: RICK: [phone call]
NARRATION: The Gioia's have learned not to get too ecstatic over the results ... they've been down that road ... twice before. Michael Vuolo, Columbia Radio News.
HOST (back announce): To find out if you're a match for Nicole or others in need of a bone marrow transplant, please visit hlaregistry.org.
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