5th Annual Isabella Santos Award

Each year we recognize someone in the community who lives a life with the same dreams and aspirations as Isabella and who is trying to make a difference in the world.  This year we were excited to recognize three, as we found it difficult to pick just one.  Each of these three individuals have given back to their Charlotte community in different ways and we are super grateful to have them support ISF and other local non-profits.

Jackson Lowry

Jackson Lowry

  • Jackson was Diagnosed with type 2 diabetes at 11.  His mom, Tammy, backed out of running the Charlotte Half Marathon due to his medical condition.  The following year (when he was 12), Jackson knew that she had backed out the year before so he asked if he could run it with her. 
  • On Saturday mornings for 4 months-while all other teenagers were sleeping, Jackson was up super early running with the Dream Team on long group runs in honor of Isabella.  He finished his first half marathon in two hours and nine minutes in November 2016.  
  • Jackson has since volunteered at many ISF events to give back and has become re-committed to Isabella’s Dream Team for the 2017 season.


Lisa Weaver

Lisa Weaver

  • Lisa has stepped up to take a Leadership role with ISF for our Annual 5K/10K for Kids Cancer Event
  • Lisa continues to do selfless acts. In 2016 she won a trip at a charity event and DONATED it back to ISF to make a bigger impact
  • Lisa sponsors local businesses that are important to her family on ISF’ s behalf to help further their community impact and help ISF at the same time



Stephanie Grigg & Erin Santos

Stephanie Grigg

  • Stephanie supported ISF before ISF was a foundation.  From the beginning she would bring the Santos family meals when Isabella was sick, she attends events, raises money, donates money, and continues to volunteer her time and network to help us expand our reach
  • Stephanie is not only active within ISF but also supports the Duke Mansion Preservation Society, the Bechtler Museum of Modern Art, our local Mint Museum, Baby Bundles, Friendship Trays and is a member of Good Friends.


13.1 miles? With diabetes?

Written by Tammy and Jackson Lowry

I learned about the Isabella Santos Foundation about 3 years ago. Because I work in the media marketing industry, somehow the video we just watched landed in my lap. I hit play . . . and then I was ugly crying in my office at work, blowing through a box of Kleenex, and was very moved by the video and organization.

Next thing I knew, one of my very dear friends – Jaymie Nielsen – posted on FaceBook that even though she was not a runner, she was going to join Isabella’s Dream Team and train with a group of people to run a half marathon.

Upon inquiring about the Dream Team, I found out that an amazing person, Coach Tom, started the Dream Team and coaches everyone through the training. We all have a training schedule that we do on our own throughout the week. Then, we come together on Saturday mornings, run as a group and raise money along the way. So, I joined the summer of 2015.

The training starts in July, and we are all training for a half marathon that falls in November.  There are a few different regional races to choose from.  We were about 3 weeks away from the Charlotte Half Marathon, and life threw me a curve ball. My son, Jackson, was admitted to the hospital and was diagnosed with Type 1 Diabetes. I thought – it’s just diabetes, right? Don’t you just take a pill and manage what you eat? It is going to be fine. But I clearly didn’t understand the diagnosis. I had to get up with him at midnight and 3am every night for the first few months in order to make sure his blood sugar didn’t go too high or too low. Otherwise, he would go in to a coma.

I was exhausted. I had to swallow my pride and email Coach Tom, Erin Santos and Jaymie Nielsen to tell them I just couldn’t run the race that year. I had no energy and Jackson needed me. Of course they understood.

Erin said she’d run for me – even though she’d already completed her own half marathon for the season. I thought YES – she is going to make me look GREAT. She is a great runner. She will get a much better time than I will. But in all honesty, I was just relieved someone could use the race bib.

The morning of the race, I saw a picture on FaceBook. Erin wrote on one arm “Isabella” and she wrote on the other arm “Jackson”. I started to cry. This race was not about Jackson. It was all about Isabella and helping find a cure for pediatric cancer.

This generous gesture was very touching to me. That was it. I am all in. I will do all that I can to help the Isabella Santos Foundation.

I wasn’t the only one who was all in . . . . Jackson was very moved and inspired. He asked me if he was old enough to run on the Dream Team. Even though he is diabetic, he still knew he could manage it and run for Isabella.

So our team welcomed Jackson at the age of 12 with open arms and we trained the summer of 2016. And after the first group run, he was hooked. He got it. And while I encouraged him at every run, the mom in me still had a nagging concern in the back of my mind – will he be able to run 13.1 miles? With diabetes?

The night before the race, Jackson and I were preparing for the race. We decided to agree upon some ground rules . . . .


-Stay together. If one of us needs to slow down, then tell the other and slow down.

-Run the entire time. Don’t stop.

-Get a drink of water at every water stop.

-Every 3 miles, eat some energy beans.

“My mom and I were doing great. I could tell she was struggling a little bit, but we followed all of our rules. When we hit the 10 mile mark of the race, I started to slowly pull away from her. I was excited and having a great time. I ended up sprinting the last 3 miles of the race, and I finished 13.1 miles in 2 hours and 9 minutes. It was the most amazing feeling to cross that finish line.”

I, on the other hand, had one of the worst races ever. I had a terrible cramp in my feet and toes. But I was determined to not stop and to follow our rules.

Even though I was in a lot of pain at the end of the race, we did it. It is one of the most amazing experiences I have ever had . . . and I got to do it with my son!

If you are a runner . . . . or want to be a runner . . . or want to be inspired . . . or simply volunteer or make a donation, I encourage you to do so with the Isabella Santos Foundation. You will not regret it. I promise.

When you are a parent and you watch your child be diagnosed with any illness or disease – – you do all that you can to fight and find a cure. The Isabella Santos Foundation does just that for all children with neuroblastoma and other rare pediatric cancers.

Living a Life in 10 Week Increments

Written by Melanie Miller, mommy of Emily Erin Fights like a Girl

Emily Miller

Emily is our first born, a very sweet and quiet 8 1/2 year old.  We also have a 6 year old girl named Sadie and Reid our 19 month old ball of energy.  Emily has Autism and is mostly nonverbal, which presents with multiple challenges of it’s own.  On June 17th 2012 Emily started having high fevers and fatigue that lasted about a week.  After a visit to her pediatrician and a few tests she was diagnosed with Mononucleosis. On a Thursday afternoon just about 2-3 weeks later, Emily’s fevers returned and she had what appeared to be a bruise on her right eyelid, so we setup an appointment for the following day.  Later that same day we called our pediatrician because she woke up from a nap and had difficulty bearing any weight on her left leg and was whining a lot.  His advice was to go straight to the ER.

After a long night of tests, the doctors were unable to determine what was really going on so they admitted her.  She was followed by several doctors and several more tests were done. On Monday morning she had a bone marrow biopsy of the left hip, and it was discovered that there were malignant cells in the bone marrow. At first it appeared to be Leukemia, which we were told had a survival rate of 98% and the treatment was done on an outpatient basis, she could even still attend school.  Just 3 hours later the doctor returned to tell us that something wasn’t quite right about how the bone marrow looked and it led him to believe it could be something a lot more serious.  We had just wiped away the tears at the thought of Leukemia, and now he was saying it could be a lot worse.  Again after a few more tests that included a full body scan we were given the diagnosis of Stage IV Neuroblastoma, a treatment plan that spanned well over a year and a half and a survival rate of only 40%.  Our stomachs dropped and we just stared at each other in stunned silence.  How could our daughter be filled with a life threatening cancer and show no signs or symptoms until a couple of weeks ago? We were told that Emily had a large tumor on the adrenal gland that sits atop her kidney and metastases to the bone marrow from her skull all the way down to her legs. She also had a tumor emerging from the orbital bone of the right eye. The image of the MIBG scan is still burned into my brain, it was lit up like a Christmas tree, I remember running out of the room.

Melanie and Emily Miller

The initial diagnosis and subsequent treatment plan was pretty rough; 6 rounds of chemotherapy that required one full week inpatient stay each time, major abdominal surgery to resect the tumor, a stem cell transplant that put us in isolation for almost 4 weeks, a full month of daily radiation, 5 week long rounds of painful antibody therapy and numerous other hospital visits to deal with the multiple side effects from the toxic treatments.  And that was just the first year and change, the relapse was a whole different and painful journey.  I won’t go into a lot of detail, but I will say that when she relapsed, just 16 months after being declared cancer free, it was terribly aggressive and our options were extremely limited.  I spent days researching treatment options, talking to everyone I knew in the pediatric cancer world, and the results were very thin.  Almost immediately we contacted CHOP in Philadelphia, Sloan Kettering in NYC, and CHOA in Atlanta.  With limited options we started radiation right away here at Levine Cancer Institute, to stop the tumor from putting pressure on her right eye, combined with chemo while we waited for answers.  Unfortunately there were almost no clinical trials that she qualified for and no standard of care, so we came back to Charlotte to start chemotherapy.  The side effects from the treatment were incredibly toxic and Emily went quickly from being healthy and robust to thin, grey, and too weak to leave her room for days at a time.  The transformation was shocking and terrifying.  Realizing the treatment was too intense and not seeing the tumors shrink as much as we were hoping, we shifted gears and went to Sloan Kettering in NY.  There we tried a couple of different options and after about 16 months of treatment got her back to remission status.  Fearing another relapse we enrolled in 1 of only 2 options available to help prevent relapse, a clinical trial which has required over a dozen trips to NY within the last year, which is no small feat when you have 2 kids under 5 at home.  But I can now breathe a small sigh of relief to say we have been in remission for almost 10 months, with the last treatment scheduled for May.

Miller Family

We were introduced to the Isabella Santos Foundation in December 2012 when Erin and friends were delivering toys to the hospital right before Christmas. I remember not wanting to leave Emily, as she was in isolation post stem cell transplant, but our nurse told me a little bit about ISF and how Erin had just lost her daughter in June of that year, just 3 weeks before Emily was initially diagnosed. I remember telling Tim, my husband, how she must have remarkable strength to be able to come into the hospital and be here to support all these families just 6 short months after losing her daughter. The following September when Emily had just entered remission we attended the race for the first time and every year since we have tried to be as involved as possible. Anytime I have a question about treatment, advice or just need a shoulder, Erin and the wonderful women of the foundation are always there for me and my family.  Knowing that every dollar we raise could lead to a clinical trial that Emily or our local friends could benefit from, fuels our drive to raise as much as possible.

Do I think that they expect to cure cancer this week? This month?  I don’t think so, but if a trial they fund saves just one child, or gives another child an additional couple of years, then it’s all worth it.  My daughter may only have a measly 5% chance of long term survival, but those statistics change every day, and the next clinical trial that ISF helps fund could be the one that saves my child or one of my friend’s children that I have met along our journey.

Emily Miller

Now I don’t want you to think I don’t deeply understand the reality of my situation, trust me I do.  I have been skeptical and negative since the day she was diagnosed.  I was the one in my family who didn’t have much hope we could beat the odds, especially after her relapse.  I am the one who has been so jaded that when a stranger asks me about her diagnosis and what her chances are, I often simply shake my head and utter the word terminal.  I look away because I hate to see the look of shock and sadness on their faces, but at the same time I am tired of lying.  Tired of slapping a smile on my face, telling them how hopeful we are, telling them that Emily is a fighter and she will beat the odds, tired of having to show any enthusiasm at all when all I want to do it curl up into a ball and take a nap.

Emily has scans every 10 weeks, so I live my life in 10 week increments.  Never wanting to plan anything that can’t be cancelled for a full refund, never wanting even to look that far ahead.  This goes against my very nature.  I am a planner.  I like things organized, I like to pretty much plan out the year ahead.  Get those vacation plans sorted out, summer camps, trips to visit family, and everything in between.  I have to live daily with the constant knowledge that I can wake up the next day and have to drop everything to take Emily to the hospital for a week-long stay.  I say this from experience, as it has happened dozens of times.  The most dramatic was when she relapsed.  It blindsided us, and now I refuse to ever let that happen again.  So I live my life with a constant dark grey cloud hanging over my head, never knowing when that lightning bolt will strike.  Everyone always preaches to live in the moment, live life to the fullest, and I do try.  I do.  I sometimes am able to find moments playing on the floor with my son, pushing the kids on the swing outside, or just cuddling up with them to watch a movie.  But these moments are few because my mind is always turning.  When is the cancer going to come back? Next month? 3 months? 6 months?  Should I try and squeeze in a beach trip next month, just in case?  How about a trip to Disney?  My father constantly teases me that I always talk about vacations, and I admit it, I do.  I have spent countless hours planning trips that never come to fruition, as if I am living in the fantasy of these great trips but never get to take them.  

But now I am starting to feel hopeful again, now I am starting to make plans.  Over the last 5 years since Emily was diagnosed I have seen a lot of progress in the world of Neuroblastoma, and a lot of that success is due to the relentless work of organizations like the Isabella Santos Foundation, and I know every year children like my daughter will have more options because of them. This is why ISF is partnering again with Levine to bring a groundbreaking treatment to Charlotte.  This new MIBG treatment room will be a real game changer for children with Neuroblastoma.  I really hope that after listening to our story that you are motivated to really take action to help raise funds for neuroblastoma research. I really hope you share what you’ve learned here, tell your friends, your neighbors, your co-workers, and your family. I hope that by telling my story it gives you a new face to fight for in your community, a local child that is fighting this awful disease for which there is no cure, for which there is so little funding, for which there is so little hope.

But by donating to the Isabella Santos Foundation you are giving families like mine the hope that they desperately need to keep going, to keep fighting,  to keep hoping.  And just in case you still think your donation won’t make an impact, back in 2007 there was a group of families in NY that went to the lead researcher at Memorial Sloan Kettering and asked what they could do to help their children.  He told them the same thing, that there was a severe lack of funding for research and that while there were better treatments out there, they would not be explored due to the lack of funds.  These families got together, gathered other NB families and raised 2 million dollars to fully fund a clinical trial that began in August of 2011.  This treatment is currently being used to treat kids daily at MSKCC and has been very successful for relapsed Neuroblastoma. This one drug has made a HUGE impact in a very short amount of time. I have met dozens of families from so many different parts of the world that travel to Sloan Kettering for that very treatment.  That treatment wouldn’t exist if it hadn’t been for a small foundation formed by a group of parents who came together and got it done. That is what the Isabella Santos Foundation is doing for children here in our community and for children across the country. So when you feel like your donation is not going to make a difference, let me tell you, it will. The next clinical trial can be that ground breaking treatment that boosts the current 40% survival rate and dismal 5% relapse survival rate, to 80% to 90% to 99%. Please think about this when you make your donation today. Thank you.

Follow Emily’s journey on facebook:  Emily Erin Fights like a Girl

Cancer Stole My Sister

Speech given by Grant Santos (Isabella’s Brother) at the 2nd annual Coffee for a Cure Events.

Grant Santos & Greg Olsen, Coffee for a Cure Day 1. Photo courtesy of Stikeleather Photography

Hi, my name is Grant Santos and I am Isabella’s little brother.  Isabella was diagnosed with Neuroblastoma just 6 days after my 1st birthday so I never really knew her without cancer.  My Mom and Dad tell me stories all the time about my life with her.  We did everything together and I brought so much comfort to her when no one else could.  I would come and visit her in the hospital and crawl right up in bed with her as we would watch movies and laugh while we ate dinner together in her bed.  I would walk around the hospital with her as Mom wheeled her IV pole up and down the hallways.  She would show me around and introduce me to everyone.   She was so proud of me.  We took so many trips together.  We loved going to Disney World and running from ride to ride as we got to meet every Disney Character you could imagine.  We had special days at with the Panthers and got to meet people like Steve Smith, Tony Stewart and more.  Our whole family moved to New York City for a couple of months with Isabella got cancer in her brain.  We stayed in an apartment that overlooked the city.  I would play trains all day long while I waited on Isabella to finish treatment, then she would come home and Mom would take us to the park and play for hours.  People would always look at Isabella in a weird way because she had a big scar on her bald head but I never even noticed it on her.  To me she was always beautiful.  For the years during Isabella’s treatment, I became her best friend.  She would always ask me to hold her hand when she would get her line put in her chest.  It was hard for me to watch, but I knew that she needed me and I would help her be strong.  Near the end of her life, she didn’t want to be around very many people.  But, I was always allowed to be around her.   She would let me crawl in bed with her and watch movies and rub her back.  She would ask about my day and I would tell her all the things I did and she would tell me about her day at home or in the hospital.  We would wrestle with Daddy and laugh and sing at night together before we crawled in bed each night.

Grant Santos & Molly Grantham, Coffee for a Cure Day 2. Photo courtesy of Stikeleather Photography

These are all stories that my Mom and Dad tell me.  But I don’t really remember them.  I’m thankful for pictures and videos that tell me this story too, and I hope one day these memories become more real to me.  I remember her red hair, and how she said my name “Graaaant” when she would call for me.  I remember she like Taylor Swift and Ariel and American Girl dolls.  I remember the day she died.  I was at a summer camp and my Grandma came to pick me up.  I remember coming into Mom and Dad’s room and she was asleep in their bed and I told her goodbye and that I loved her.  I remember going to Calvary for her funeral and that my cousins were there and Miss Chrissy read a poem.  But I don’t remember much more than that.

It’s crazy to think that we were best friends, but I can’t remember it.  But that is what pediatric cancer does.  It steals people from you.  It steals sons and daughters, it steals brothers and sisters, it steals best friends.  It also steals the possibility of creating memories.  Cancer stole my sister, my best friend and a lifetime of memories that we were supposed to make together.  We were supposed to be in high school together and be at each other’s college graduations and weddings.  We were supposed to be aunts and uncles to each others kids and our kids were going to be cousins who would go to the beach together.  We were supposed to be able to call each other and complain about Mom and Dad and have secrets between us that we would never tell them.  But none of that will happen.

Now, the only way I can be the best brother I can be is to bring her flowers to her site and talk to her in my mind.  But the other thing I can do is help to find a cure for the disease that took her from me.  My gift to her to prevent someone else losing their best friend too.  She should still be here with me today, riding the bus to school, laughing, playing and fighting – the way that brothers and sisters were meant to be.  But she’s not.

I hope that you will give today in honor of my best friend and sister Isabella.  Together we can make a difference and stop this awful disease from taking one more kid from a family.  I know she is looking down on us and is hopefully proud of the brother that I’m still trying and will always be to be to her.  I miss her so much.

Thank you.