Neuroblastoma Warrior Seeks Hope from Precision Medicine

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Neuroblastoma Warrior Seeks Hope from Precision Medicine

Written by Rachel Wood, Marketing Director 

Eli was diagnosed with stage 4 high-risk Neuroblastoma in 2016 at just 4-years-old. After successfully completing 17 months of traditional treatments and enrolling in a clinical trial to help him stay free of disease, Eli’s cancer relapsed in August 2018. In the last 6 years since diagnosis, Eli has gone just 5 months without active treatment or some sort of maintenance.

Now 10 years old, Eli travels from his home state of Wisconsin to be treated by Dr. Giselle Sholler under the Isabella Santos Foundation Rare & Solid Tumor Program at Atrium Health Levine Children’s. With his treatment options few and far between, Eli recently had genomic sequencing performed on his tumor, generating data that will provide insights on what his cancer may or may not respond to. This is called precision medicine, not covered under insurance, and creates personalized treatment plans for a child. 

The Isabella Santos Foundation has committed to funding every single child being treated under the Isabella Santos Foundation Rare & Solid Tumor Program to have their tumor sequenced for precision medicine. These kids deserve more hope and better outcomes.

“After nearly six years of continued relapses and progressions, and traveling to multiple hospitals across the country in hopes of finding the right trial to cure our son’s cancer, it is now painfully obvious that Eli’s cancer does not respond to the conventional treatments, trials, and protocols currently available to neuroblastoma. We are incredibly thankful that Dr. Sholler and her team are providing hope and options to patients and families through precision medicine. Studying patient-specific cancer allows doctors to better understand what an individual’s disease may and may not respond to, while minimizing guesswork and eliminating treatments that would not be beneficial.”

The ultimate goal of precision medicine is to attack the cancer, not the whole body… creating a patient-centered therapy giving every child, everywhere hope. By sequencing a child’s tumor, doctors and researchers will have the ability to:

UNDERSTAND:  Sequence and analyze a child’s tumor. Understand what mutations are driving that unique tumor to be cancer. The more that is understood about cancer, the cleaner, and more effective treatments become.

TARGETED TREATMENT: Doctors use the information they know about each tumor’s genetic makeup to add targeted drugs onto the standard of care, with the goal of increasing the efficacy of treatment. As they continue to gain a better understanding and have more data of what is beating cancer for kids, they hope to leave “kitchen sink chemo” behind and eventually move to treatment regimens that attack cancer alone – not the rest of the body.

DISCOVER: Understanding tumors and which mutations are causing cancers to continue growing helps discover targets to treat. Researchers can work from already-FDA-approved drugs which target those markers to discover new treatments. For instance, maybe a drug that was developed for osteoporosis, or Alzheimer’s, could actually shrink a child’s tumor.

“Precision medicine provides a lot of hope to families like ours who have experienced so many years of disappointment and defeat. It is important to us to give our son the best shot at beating this ugly disease and we are beyond grateful to have this chance.” -Jamie, Eli’s Mom

Every $1,500 raised pays for genomic sequencing to provide Precision Medicine for ONE cancer patient. Every donation amount counts, both big or small. By donating to the precision medicine program, you are providing kids with more options and more hope. Donate today or make an ongoing impact and join our monthly or quarterly donor program.


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