September is Pediatric Cancer Awareness Month — What You Can Do

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Emily on September 1, 2009, the day she was admitted to CHOC.

Exactly five years ago, on Tuesday, September 1, 2009, my daughter, Emily was admitted to the oncology floor of Children’s Hospital of Orange County (CHOC) for what looked to be a cancerous tumor. Turned out that, indeed, it was cancer, neuroblastoma, to be exact. After one surgery, and a wide array of scans and tests, we were sent home 15 days later, thinking our life would be back to normal. Unfortunately, that wouldn’t be the case. Emily was to be admitted to the hospital again, had another (unsuccessful) surgery, and we were told that she now had Stage 4 cancer. At this time, we were referred to Children’s Hospital of Los Angeles (CHLA), where we saw Dr. Judith Villablanca, who helps lead the research on neuroblastoma by working as an investigator and serving as one of the leaders of the New Approaches to Neuroblastoma Therapy (NANT). NANT joins laboratory investigators with physicians treating patients at 13 pediatric cancer centers across North America to develop and test new therapies to improve survival for children with neuroblastoma.

On December 31, 2009, Dr. Villablanca shared with us the most wonderful news. Emily did not have Stage 4 cancer, she did not need intensive chemotherapy treatment, and that we only needed to remove a bit of residual cancer, which was not taken out during her first two surgeries. Once again, but this time at CHLA, Emily underwent surgery, and it was a success. This past May 2014, Emily graduated to the “Life Survivorship Program” at CHLA. We’ve traveled a hell of a long road, but compared to others with neuroblastoma, our journey was a cake walk.

Emily, today.

Emily, today.

You see, neuroblastoma can often spread throughout the body. Surgery, chemotherapy, radiation, stem cell transplants . . . these are all some of the things that neuroblastoma kids (it’s rare for a child older than 10 to be diagnosed with the disease) have to go through, which is why it’s so important for neuroblastoma research to be conducted. Unfortunately, pediatric cancer research doesn’t get much money–of the approximate 70 FDA-approved drugs that are less toxic, and targeted to specific cancer treatments, only two are for pediatric cancers: leukemia and brain cancer.

Susan Giusto, a mother of two girls from Laguna Beach, is helping to change that. Her younger daughter, Cathryn, was diagnosed at age 5, with Stage IV neuroblastoma in November 2008. Upon diagnosis, Susan was told that Cathryn had a 50% chance of survival, and would have to go through the whole rigmarole of neuroblastoma cancer treatments. Through the 290 days spent in the hospital, Susan and her husband, Steve, had a constant parade of friends coming by to help her family out—meals, love, play dates, car pools . . . Susan named the group “FRoCs,” which stood, and still stands for “Friends of Cathryn”.

Today, Cathryn is a healthy and fun loving 11-year-old and FRoCs has turned into the FRoC Fund which helps raise monies for less toxic treatments that minimize side effects and increase survival for those kids with cancer. This September (which happens to be Pediatric Cancer Awareness month), the FRoC Fund and NANT (yes, the amazing Dr. Villablanca was Cathryn’s oncologist as well) has been picked as one of the featured charities by The Carousel of Possible Dreams Foundation.

COPD-FROC One Page Final

 

The Carousel of Possible Dreams Foundation is part of the Festival of Children Foundation, which improves the lives of children by strengthening the charities that serve them. The Carousel of Possible Dreams is one of their biggest fundraisers—each September, charities are picked to benefit from monies raised from riding the carousel at South Coast Plaza. This year, the FRoC Fund and NANT have both been chosen to be recipients of the funds raised. For the entire month of September, donations can be made at festivalofchildren.org/froc, and on the final night of Tuesday, September 30, from 5:00 – 8:00 PM, a celebration will take place at the carousel at South Coast Plaza. Donors will ride the beautiful horses in honor of a loved one who has experienced, is going through, or is now an angel, to raise $500,000 to make a difference to those children who have been diagnosed with neuroblastoma this year. Recognizing the need to improve and expedite research for neuroblastoma, a prestigious cancer research foundation has pledged a $250,000 matching grant to the FRoC Fund/NANT for this fundraiser. So, every dollar raised will be matched up to the initial $250,000!

How you can help:

Susan’s daughter will be riding one of those horses. Help make her survivorship a reality for those who are enduring neuroblastoma treatment today. Go to www.festivalofchildren.org/froc, and donate on the FRoC page. Or, join FRoC and form your own team to raise funds throughout the month! Just designate a child as a Carousel Rider on the FRoC page, load and send emails asking friends to donate $5 to $500 . . . every donation counts and will be doubled by the matching grant!

Come out to South Coast Plaza from 5 – 8pm on Sept. 30th. Ride the Carousel enjoy our celebration with food and drink provided by The Capital Grille.

For those of you who know someone who was/is afflicted by neuroblastoma, FRoCs wants photos of that warrior to print on t-shirts which people will wear when they ride to honor a fundraiser who can’t be present . . . people from all over will be joining us as ‘virtual riders’. Invite your friends to be virtual riders to honor the kiddos whose lives have been taken by this horrible disease.

For questions, more information, or to RSVP or send photos for the September 30th event, please contact Susan Giusto, spgiusto@gmail.com. Also, make sure to check out Friends of Cathryn on Facebook.

As a mother to a neuroblastoma survivor, I can’t thank you enough.

 

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Comments

  1. It doesn’t seem possible that 5 years ago we were all so scared for Emily’s health. She’s entering Kindergarten tomorrow an amazing active imaginative out-of-the-box thinking girl.

    What Alex doesn’t say in her article is that non-stop research, networking, and constant questioning led her and Bowen to LA Children’s and Dr. Villablanca. The lesson is never, never stop being your child’s advocate.
    Grandma and Papa are so grateful for Emily’s good health and have always felt that Em’s parents had no small hand in the positive outcome of her bout with cancer.

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