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Isabella Santos Foundation Announces 2019 Board of Directors

CHARLOTTE, N.C. – May 13, 2019 – The Isabella Santos Foundation (ISF) announced today its slate of 2019 Board Members. 

  • Neil Aldridge, Global Channel Partnerships, Gold Group Enterprises
  • Meredith Dean, Seacrest Studios Program Coordinator at Levine Children’s Hospital & Founder at the Dean’s List
  • Matt DuBois, Owner, Centurion Entertainment
  • Suzie Ford, Owner, NoDa Brewing Company
  • Charlotte Guice, Owner, Charlotte Guice Designs, LLC
  • Jay Levell, Partner, White Point Partners
  • Jacob Lewison, Marketing Manager, QCarolina Restaurants, LLC
  • Jonathan McFadden, Content Strategist/CopyWriter, Lending Tree
  • Tim Miner, Co-Founder, Charlotte is Creative, Co-Host Creative Mornings
  • Barbara Morgan, Owner, Brixx Pizza
  • Jennifer Pope, Pediatric Hematology and Oncology MD, Atrium Health
  • Blair Primis, Senior Vice President, Marketing & Talent Management, OrthoCarolina
  • Sandra Szoke, Partner, Impact Marketing Partners
  • Jacob Virgil, Senior Associate & SEO Lead, Red Ventures
  • Matt Yarmey, Owner, Pure Intentions Coffee

“We are very grateful for our incredible board of directors who bring amazing talent and experience in serving our organization and in impacting our local pediatric cancer community,” said Erin Santos executive director and president of the Isabella Santos Foundation. “Their dedication personally and through their respective companies is one of the reasons why Charlotte is the best city with the most giving community. We are proud to have them behind us.”  

About Isabella Santos Foundation

The Isabella Santos Foundation (ISF) is a 501(c)3 childhood cancer foundation dedicated to raising funds for research for rare pediatric cancers, and charities that directly impact the lives of children with cancer. ISF was founded in honor of Isabella Santos from Charlotte, N.C. who lost her battle against neuroblastoma. ISF is committed to improving rare pediatric cancer treatment options in an effort to increase the survival rate of kids with cancer so they can live their dreams. ISF has donated over $3 million to date to expand the scope of pediatric cancer research and treatment, and to fill various needs surrounding childhood cancers. 

For more information, visit https://isabellasantosfoundation.org/ or follow ISF on Facebook (www.facebook.com/IsabellaSantosFoundation), Instagram (www.instagram.com/theisfoundation), Twitter (www.twitter.com/TheISFoundation) and LinkedIn (https://www.linkedin.com/company/isabella-santos-foundation/)

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CONTACT:

Jenni Walker – Walker PR Group – 980-339-8041-office/704-649-6571-cell

jenni@walkerprgroup.com

Defining Support, The Cancer Mom Series: Melanie

In one split second, their world changed forever.   A scary and isolating job that no woman could ever prepare for.  Regardless of the type of cancer, the experience is long and difficult. Regardless of remissions, cures or unimaginable loss, cancer is part of their lives forever.  Their moments in life are now marked by haunting memories and inconceivable feelings.  Their family’s timeline is now marked by ‘before’ or ‘after cancer’. We are working during the month of May in honor of Cancer Moms everywhere, fighting for their kids. We will share stories of many incredible Cancer Moms this month and how they define support.  We want to be their voices, reminding you all that the ONLY way we can make things better for kids fighting cancer is to do something about it. We hope we all find ways to lighten the load for our friends, neighbors and family members struggling quietly, valiantly, every single day, to keep their children alive. Donate today in honor of a mom. Donate in honor of a child. Your donation to ISF helps fund pediatric cancer research in our local community.

By Melanie Miller

Melanie is Mom to Emily, who was diagnosed with stage 4 neuroblastoma just after her 4th birthday.  Emily is currently 10 years old and no evidence of disease.

I know I speak for a lot of other “Cancer Moms,” when I say it has been the greatest challenge of my life to be a caregiver for a child with cancer, and the first thing that you sacrifice is your own self-care.  It gets thrown out the window almost immediately.  Every ounce of energy was put into taking care of Emily when she was going through treatment.  I barely had anything left for my younger daughter, let alone my husband and least of all myself.  When I think of the word support, I think of someone who is there to hold me up when I am falling, giving me breath when I am drowning. My parents and sister were my rocks.  They spent countless hours in the hospital with Emily, so I could take a break, run home for a shower, to play with Sadie, to take a nap, a walk, anything.  They were my shoulders to cry on, to scream in anger and frustration, to laugh with, and to lean on when I was physically and mentally exhausted.  They would sit with me in silence because they instinctively knew that was all I needed. They would force me out of the house to go see a movie, take a swim in the pool or wander aimlessly around the mall.  Without them I would have suffered enormously.

Support also comes from friends and neighbors.  For me the most important role they played was in for caring for my younger daughter, Sadie.  Support came from friends who would pickup and drop-off my younger daughter to/from preschool, who would take her after school to their homes for hours and feed her dinner. Friends who helped so much that they became friends with my parents as well.  Jackie, Heidi, Karen, Tara, Teeny, and other moms who took Sadie in like she was one of their own, a surrogate parent when I couldn’t be there.

The best thing a friend could do was just being there without asking, someone pushing in when you retreat into yourself, someone showing up out of the blue and someone forcing you to take care of yourself as a caregiver. I am terrible for asking for help from anyone apart from my immediate family, and I tended to isolate myself when Emily was sick.  If friends offered to visit I would usually turn them down or delay the visits.  The best thing someone could do was almost not give me an option, such as “I am swinging by the hospital to sit with you today and bring lunch, what time works for you?”  If they didn’t really give me an option to say no, then I usually accepted and was always thankful for the visit.  When your child is sick and you are stuck in the hospital for what seems like an endless amount of time, you don’t want to have to make any decisions for yourself, so when friends would just show up with coffee, treats, a meal or just a balloon for Emily, it was always appreciated.  

“Let me know if you need anything,” can be the least helpful thing, however well intentioned, that someone can offer. We know they mean well, but very few people will react to that with “YES, I need XY&Z.”  Instead, if someone wants to help they should just ACT.  Show up at the home and mow the family’s lawn, drop off a meal (or setup a meal train), pick up groceries, set a date to pickup the siblings for a playdate or activity on the weekend, pick a day to come sit with the sick child in the hospital so the parents can go out and have a meal together, even if just in the cafeteria, things like that. My advice to friends and family of a family who is going through treatment, simple, just show up!

Some of the most memorable offers of support were often the simplest, a friend offering to sit with Emily in the hospital so I could go take a walk outside or better yet go home and take a shower.  My #1 memory, with a bullet, is one of someone who offered help and wouldn’t take no for an answer. It was in December 2012, when Emily’s special needs teacher from the year before, Ericka, insisted that she come sit with Emily for 6 hours on Christmas morning so we could be home with Sadie to open presents.  Ericka had 2 young children at the time, and what she offered was a huge sacrifice that we did not want to accept.  Emily was in isolation for her stem cell transplant, and we had been there for over 3 weeks by the time Christmas rolled around.  Ericka put her foot down and said, “I am showing up at 10 am on Christmas morning, so you better go.”  It was such a gift, I will never be able to adequately thank her.

Donate in honor of these incredible women, your donation to the Isabella Santos Foundation helps fund research so desperately needed for rare pediatric cancer patients.

MAY CANCER MOM SERIES:


Defining Support, The Cancer Mom Series: Dianna

In one split second their world changed forever.   A scary and isolating job that no woman could ever prepare for.  Regardless of the type of cancer, the experience is long and difficult. Regardless of remissions, cures or unimaginable loss, cancer is part of their lives forever.  Their moments in life are now marked by haunting memories and inconceivable feelings.  Their family’s timeline is now marked by ‘before’ or ‘after cancer’. We are working during the month of May in honor of Cancer Moms everywhere, fighting for their kids. We will share stories of many incredible Cancer Moms this month and how they define support.  We want to be their voices, reminding you all that the ONLY way we can make things better for kids fighting cancer is to do something about it. We hope we all find ways to lighten the load for our friends, neighbors and family members struggling quietly, valiantly, every single day, to keep their children alive. Donate today in honor of a mom. Donate in honor of a child. Your donation to ISF helps fund pediatric cancer research in our local community.

By Dianna Lariviere

Dianna is mom to Max, who currently is in treatment for Stage IV High Risk Neuroblastoma.

Dianna & Max

When Max was diagnosed on August 5, 2018 our lives were forever changed, and it’s been extremely difficult in so many ways we didn’t even imagine possible.  We live in a very rural community and it felt like everyone, even without knowing us personally, immediately dropped to their knees in prayer.  The outpouring of love for our son was and still is indescribable.  We moved south 8 years ago and to have so many people come together for our son still brings me to tears.  The impact Max has made in a weird way helps me.  His disease has put so many parts of life into perspective for not only us but everyone that knows him or follows his journey.  

It took a very long time for me to feel like I was ready to truly speak about being a cancer mom.  I have developed very bad anxiety and to be honest, I am angry.  Sure I do the updates and post about how pediatric cancer deserves more federal funding but to really talk in depth about the situation didn’t happen until more recently, and we are 9 months into an estimated 3-year treatment plan that’s 5 months behind the original schedule due to various factors.  Our social worker reached out to another cancer mom who’s son had a similar diagnosis and is doing well.  My anxiety and worry was really getting the best of me and I needed to hear from someone who lived it that there was light at the end of this pitch black tunnel.  She checks in all the time and has really been a blessing to me.  I don’t know that I’ll ever be able to show her how much she has helped me but someday I’ll try!  I’ve met other cancer moms that have treated at our hospital, Levine Children’s, and having someone who has lived the nightmare that you can openly talk to, that completely gets what you are saying without judgment, is a huge stress reliever.   You will never meet a group of more badass women (am I allowed to say that?!) than those who have had to watch their child, many times helplessly, endure treatment for cancer.

I am extremely thankful that we are treating at a hospital that provides such close care to the patient and family.  It really is a family.  These children bond so closely with the nurses and oncologists, social workers and child life specialists.  I was going to count how many days we have spent in the hospital but I don’t think that’s a good idea because it’s way more time than we have spent home. 

The parental support is so important.  I have friends and family that check on me multiple days a week.  I don’t always respond and they don’t care.  They just want me to know that they are there, from a distance, ready whenever I am for whatever I need – a cry, a scream, a hug, to vent or an adult beverage and not talking about the c-word at all.  I’m told quite often that I need to take care of myself to be able to take care of Max.  I’m still working on that part.  I love to do arts and crafts and garden but it’s hard when you aren’t home often or your child isn’t strong enough to allow for you to get that release.  Trying to fit in family time is difficult as well.  It’s not often the 3 of us are all together. 

I will forever be a cancer mom.  I’ll never be that person I was before I was told my child has cancer.  While everyone is wishing for their child to make the sports team or be top of their class or to not catch the stomach bug being passed around, I’m wishing for survival.  So to all those who have reached out, prayed and sent positive vibes, fed us and provided us with gas money, sent Max gifts to put a smile on his face and provided an ear to talk with – THANK YOU!  Your support matters more than I could ever put into words.

Donate in honor of these incredible women, your donation to the Isabella Santos Foundation helps fund research so desperately needed for rare pediatric cancer patients.

MAY CANCER MOM SERIES:

The ISF Skinny – April 2019 Edition