Nora’s Story: The Classic Story of the Benefit of Research

 



For many, Thanksgiving is all about what I call The three F’s-the three food, family, and football. But for children like Nora who are living with cancer, it can be a time to give thanks for breakthrough discoveries and lifesaving treatments. I got to know Nora and her family through her brother Jeff who was my student in 2016. 

The story of Nora, a neuroblastoma survivor, is a story that showcases research is necessary not just in saving lives but in transforming lives.

Nora was a year and eleven months old when she has diagnosed with stage 4 neuroblastoma when she visited her doctor for a check-up because was running up fever for weeks. Neuroblastoma develops from immature nerve cells found in several body areas (arises in and around the adrenal glands, atop the kidney) and primarily affects children age five and younger. Nora’s parents (Kate and Roy) were devastated at the news of their daughter having cancer. Each new detail opened up a new world of scary possibilities; cancer had spread to four different parts of her body, and the type of genetic mutation that has occurred makes Nora’s cancer hard to treat. Nevertheless, doctors told them there was a fifty-fifty chance of Nora surviving. On her doctor's advice, she was enrolled in a new clinical trial since her chance of surviving was slim. Nora benefits from targeted therapies that target the tumor’s particular genetic mutation giving doctors the opportunity for a better treatment plan.

It was the beginning of a long fight for Nora spending one hundred and forty nights in the hospital. She endured chemotherapy, radiation, and bone marrow transplant rounds, coupled with countless shots, infections, and medicines. In July 2015, Nora finally finished treatment and was declared No Evidence of Disease (NED) in 2016. She is now cancer-free.

Today, Nora is doing very well, thanks to the clinical trial. she not only recovered, but the therapy also prevents cancer from coming back, something that wasn’t available years ago. Nora and her family are grateful and have now realized just how much research can have real-world benefits for kids.

Comments

  1. Myrna ShakirJuly 24, 2021 at 7:34 AM

    Thank you for sharing this amazing blessing of a story. Nora’s journey definitely reinforces how beneficial research is for children. It is because of Nora’s parenting have the courage and providing an informed consent allowed researchers to study if the trial would develop the expected outcome that they were aiming for. If so, this would allow this treatment to help more children who is batting cancer. Reading Nora’s story makes me believe that the medical team was completely honest with the parents about Nora’s health as well as the benefits and risks of the trial.
    Trochim, W. M., Donnelly, J. P., & Arora, K. (2016). Research methods: The essential knowledge base (2nd ed.). Boston, MA: Cengage Learning. Chapter 2.

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    Replies
    1. LucyJuly 24, 2021 at 10:30 AM

      Thank you Myrna for the comment. Stories like this make you appreciate research the more.

      Delete
  2. Kathleen MontoyaJuly 25, 2021 at 8:08 AM

    What a beautiful story Lucy. I'm sure that is extremely scary for parents. And then to put your child through a clinical trial when you're not sure what the outcome will be, must be hard. Me being 30 weeks pregnant, this hits me hard. It took five years and tons of procedures being shots to get me pregnant. Then to find out my child has cancer. I wouldn't want to lose my child at 11 months because of cancer, but I'm not sure my husband would want to do a trial like that. That's a hard decision. And look at this wonderful outcome. 55% chance that she will make it through, and she did. :)

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