TODAY   |  December 02, 2010

Mother fights to live beyond grim diagnosis

In January 1996, Kathy Giusti, a wife and mother, received a fatal diagnosis of an aggressive type of blood cancer. She tells TODAY’s Ann Curry that her ultimate goal is to live to see a cure.

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This content comes from Closed Captioning that was broadcast along with this program.

>>> this wife, kathie juicy was diagnosed but has lived her life to the fulliest and is doing something about it. first, her moving story.

>> i was an incredibly happy 37-year-old. i had a beautiful daughter, wonderful job, a happy marriage. i had absolutely everything going for me. it came crumbling down that day.

>> instead of seeing her diagnosis as a death sentence, kathie focused on life and made a surprising decision.

>> you had a child, knowing that you may not live to see that child grow up.

>> i talked long and hard about it. i said, i would love to have another baby. i knew he would, too. maybe they weren't going to have their mom, but they would have so much love around them that it would be okay.

>> that's great.

>> with the time she had left, kathie decided to put her fate into her own hands. with her identical twin sister, karen, started the multiple myeloma research foundation . within the first year, the sisters helped accelerate scientific research for the disease but for katkathy and her family, still a difficult battle.

>> i hear it's only when you accept how to die you know how to live.

>> you hit the low of lows when somebody tells you you are going to die. everyday after that is a blessing. i distinctly remember when he told me, thinking to myself, my little girl is 1 year old, i kept thinking, three years, i won't get to see her go to kindergarten.

>> that was over a decade ago, not only has kathy seen her go to kindergarten but they're looking at colleges. as for the son born with the the -- while she had the diagnosis?

>> i just want to watch him.

>> is it true you have raised $150 million for what was once an unknown cancer?

>> it is. i think that is remarkable, when you think about the fact that myeloma is very uncommon. i've been willing to put a face to a disease that nobody was aware of before.

>> the last few years haven't all been easy. kathy went through chemotherapy, radiation and received a stem cell transplant from her sister. today, kathy is in remission. although she has already beaten the odds, she still strives for the ultimate goal, a cure.

>> if you do die before a cure is found, will it give you some peace not only to have prolonged your own life but to prolong the lives of so many others?

>> i think, looking back, i'll be able to say, i did everything i could, i helped a lot of people along the way. and i love the beautiful legacy. i don't think my kids will ever look at everything i accomplish accomplished and wonder how much i loved them.

>> good morning.

>> good morning.

>> i want to mention your husband, paul, who has been right by your side, standing right over there.

>> yes.

>> at the news desk. wonderful, loving. watching this tape, there were moments he was joyful and smiling and you were as well, noting especially your children -- you've been able to see so much of their lives.

>> i'm so grateful. i'm grateful for every moment i see and i'm grateful for the years we brought thousands of myeloma patients in for all the partners that helped get all this done, get us to new treatment.

>> i can't believe it's been 10 years since you and i first met. when i think over what you have done, not only raising $150 million and being strong and raising these children, but also accelerating the rate at which research can progress, because you -- when you started, you noticed researchers were not talking to each other. why weren't they talking to each other?

>> it's interesting. i think when i look back over those 10 years, i can see, you know, what we did that was right, which was, number one, i had a great science and business background to start a research and drug development foundation. that itself was unique. second, we air able to attract the academic centers and pharmaceutical centers to work side by side with us and together we created this innovative model towards drug development .

>> which is about drug communication and sharing data. beyond your focus is multiple myeloma . is this a problem in other kinds of cancers as well, researchers really need to step up, stop being competitive and share data so this can go faster?

>> yeah. you can look at foundations need to set up communities where they make it's easier for researchers and scientists and clinicians to work together. that's what we did. we said, you know, if you work with us, if you sign a membership agreement to work with us, we want you to bank tissue with us, do phase 1 and 2 clinical trials with us. we have a critical mass of tissue in a very uncommon disease, where you need to build that in a critical new trials that have been launched.

>> if you can do that for a rare cancer, should be able to do that for common cancer. what is the future for you? what is your goal now?

>> we've been so lucky, the results are there, had four drugs approved and five more in phase 3 clinical trials . the future is the fact myeloma is not just one disease, there are probably ten types of myeloma. we have to get the right drug for the right patient at the right time and have to build on clinical trials and find that to make sure we are successful in a cure.

>> kathy , founder of the multiple myeloma foundation . thank you so