Defining Support, The Cancer Mom Series: Kellie
Defining Support, The Cancer Warrior Mom Series is a collection of thoughts from many incredible Cancer Moms and how they define support.
Tag Archive for: neuroblastoma
Defining Support, The Cancer Mom Series: Dianna
Defining Support, The Cancer Warrior Mom Series is a collection of thoughts from many incredible Cancer Moms and how they define support.
Charlotte’s unsung heroes: They made Charlotte better in 2018 (Part 2)
Originally published by The Charlotte Observer Editorial Board
Erin Santos with her daughter, Isabella. Santos has responded to Isabella’s death by helping others in similar situations. ANGELO MERENDINO
Each year, the Observer editorial board searches for heroes among us who make our city and region better. This year, we’ve found people who’ve made the most of a second chance, helped dads connect with children, helped students explore and forever changed treatment of cancer in Charlotte. (We published our first two honorees yesterday.) To them, and to all who make our community better, we say thank you!
Reimagining pediatric cancer care in Charlotte
Charlotte’s Isabella Santos was 2 years old when she was diagnosed in 2007 with neuroblastoma, a rare cancer that mostly afflicts very young children.
Her parents couldn’t get the treatment they needed for her in Charlotte. So they took Isabella to Sloan Kettering in New York and to Children’s Hospital of Philadelphia to try to save her life.
Even as they cared for their daughter, they quickly created the Isabella Santos Foundation to raise money to fund research at Sloan Kettering for a cure. At first it wasn’t much – they raised $7,000 at their first 5K race in Ballantyne.
But Isabella’s mother, Erin Santos, quit her job at Lending Tree to work on the foundation full time, and she changed the focus. She had had the resources to take Isabella around the country, but she knew other families didn’t, with deadly results. They needed world-class treatment in Charlotte.
So Erin stopped sending money elsewhere and instead worked with Levine Children’s Hospital to treat neuroblastoma here. The foundation raised $1 million last year and $1.4 million this year. It used part of that money to partner with Levine to build an MIBG treatment room, one of fewer than 20 in the country and arguably the best.
Erin Santos and the Isabella Santos Foundation have forever changed treatment of neuroblastoma in Charlotte. But they’re not content to stop there. They have pledged to raise $5 million over five years to have Levine build a rare and solid tumor program that would treat about 15 different rare cancers. It would be the only one of its kind in the country.
Isabella Santos died in 2012 at the age of 7. But her life, through the work of her mother Erin, will benefit others for generations.
Max – The Mighty Cancer Warrior
Max the mighty cancer warrior
Max is a neuroblastoma warrior. The energetic and active three-year-old has been fighting high-risk Stage IV Neuroblastoma since August.
His diagnosis came as a complete surprise to his parents, Dianna and Roger, who say that Max was the healthiest and wildest kid you’d ever meet.
Max sometimes complained about knee pain and then his eye started getting puffy. Then one day, his eye looked black and blue and got worse. Then the other eye turned yellow and started to bruise. Knowing something was off, Max’s parents took him to the doctor for blood work.
The results showed cancer, so his pediatrician called Dr. Oesterheld at Levine Children’s Hospital, where Max was admitted immediately. It was there that Max and his parents became part of the LCH family under the great care of Dr. Oesterheld and an amazing team of nurses and other medical professionals to begin a long and rigorous treatment process.
Max’s Treatment
The primary tumor is on Max’s liver, on two lymph nodes on his abdomen, and his eye. He recently had 30 percent of his liver removed, a resection surgery to remove his tumors, and received his sixth round of chemotherapy. He has also had 11-12 blood transfusions and four platelet transfusions since August.
Max the mighty cancer warrior
Max still has bone cancer on the entire top of his skull, right upper arm, pelvis, spine, and legs. His treatment is being pushed back three to four months, because his cancer isn’t quite ready to move forward with the original treatment plan, which would include a high dose of chemotherapy and stem cells. He may end up needing MIBG Therapy.
“I would never want anyone else to have to go through this,” said Max’s mom, Dianna. “It’s very scary, but we are very grateful to the amazing team at Levine Children’s Hospital who are like a second family.”
Max is part of DFMO drug study at LCH to help prevent relapse of neuroblastoma. As part of the study, he takes a chemotherapy pill at home. Fortunately, it doesn’t add any additional side effects or toxicity.
Max bounces back between treatments and enjoys his time at home in Montgomery County where he and his family have a hobby farm. Max’s best friend is his chicken named Pumpkin who is like a dog in the way he plays with him and follows him around.
Pediatric Cancer Funding
Max receiving treatment at Levine Children’s Hospital
It wasn’t until this summer’s shocking news that Dianna realized how much funding is needed in the pediatric cancer field. Since Max’s diagnosis, his parents have become passionate about raising awareness and funding for pediatric cancer and supporting local hospitals like Levine Children’s because they don’t turn people away.
Adds Dianna, “These hospitals are like angels doing everything they can do to give all these kids a fighting chance. My new mission is educating people about rare childhood cancer. No baby, three-year-old or teenager deserves to die because there is not enough money to save their lives. I will do whatever I can to make a difference.”
If you are interested in helping support Max during his treatment to assist with medical expenses and gas cards for their two-hour trip from Montgomery County to Levine Children’s Hospital, please email Dianna at dianna.lariviere@gmail.com to her PayPal.
Max and his pet chicken Pumpkin
Max, Cancer Messed With the Wrong Kid
Max and Santa
Fundraising for a Cure
Isabella’s Dream Team, Danni Volman
The ISF Dream Team consists of all types of runners . . . some who have never run before, some who run a race here or there, some who want to strive to obtain a dream they have never achieved, and some who are passionate runners every day. The uniqueness of Isabella’s Dream Team is what makes it a “DREAM TEAM.” We celebrate everyone’s achievements . . . including a pretty special person, Danielle “Danni” Volman.
Danni was 4 years old when her mom found out she had breast cancer and leukemia. Two years later, her mom passed away. No one can fathom losing their mom, but especially at such a young age. Danni grew up convinced she wanted to do anything and everything to help find a cure for cancer.
Through her elementary, middle and high school years, Danni used her love for math and sports to fundraise to help find a cure. During this time, a teacher at her high school had a daughter who was diagnosed with neuroblastoma. Danni coordinated a 5k for the school, embracing the power of many to give support and love to this precious little girl. Not only is the little girl still alive today, but she continues to impact Danni’s life to never stop fundraising for cancer.
When Danni learned about the Isabella Santos Foundation, she knew she was going to be involved – – somehow, someway. She already had neuroblastoma affect her life, and she knew she could help make an impact.
Danni joined the ISF Dream Team in 2014, still using her love for math and sports to help fundraise for crushing cancer. She accomplished many races over the last several years. In 2017, Danni qualified and finished the Boston Marathon for the very first time. Even though the weather for the 2017 Boston Marathon was the worst weather in its history (30mph winds, 37 degrees, and pouring rain!), Danni completed a dream of hers. The ISF Dream Team is so proud of you Danni!
Danni has collectively raised over $85,000 for cancer research, and she is on track for hitting a personal goal this year for the Isabella Santos Foundation – $20,000. She only needs $2500 to hit this goal. Let’s cheer her on and make a donation in honor of her mom.
Click on Danni’s First Giving page to make a donation: https://www.firstgiving.com/fundraiser/danni/2018-Isabella-s-Dream-Team
Read Dream Team Member Features
ISF Dream Team
The ISF Dream Team, created in 2014, is a running group that assists you in training to run the race of your dreams. You can train for a 5k, 10k, half marathon, half marathon relay, full marathon relay, or a full marathon. You are provided a training schedule, invited to group runs, and inspired by a phenomenal team of people. Not only will you meet a dynamic group of people, but you will also be inspired through your friends and family as they support you through the training. The ISF Dream Team has raised over $400,000 to date, with the funds contributing to our local Charlotte community. If you want to join the ISF Dream Team, we would love to hear from you. Please email us at info@isabellasantosfoundation.org.
