He wasn’t there in the beginning or the end…

Written by Erin Santos, Isabella’s Mommy

It’s been a long 5 years but relationships are growing and changing at Levine Children’s Hospital.  I’ve gone from admiration and love, to fear and anxiety and then back again with these doctors.  The walls and people that once crippled me upon entering after Isabella’s death have become a second home to me.  I know I can joke a lot about how a large donation commitment can buy you a hospital friendship, but it’s become much more than that.  I feel like I have become so much stronger around them.  Just a few years ago, I could barely stand without my knees buckling when I knew Dr. Kaplan was going to be at an ISF event.  Then, this past July – I find myself in the oncology clinic helping give gifts to the kids for our Christmas in July event.  I feel  him coming down the hall before I even see him, just like it used to be –  and my heart still stops for a minute.  We exchange pleasantries and hugs – like you do with an old boyfriend who you run into at a Starbucks years later.  It’s uncomfortable because there was history… but it’s becoming more comfortable because there IS history.  Not sure if I can ever feel totally comfortable around him – but I’m trying really hard.

Luckily, my new contact at Levine isn’t my old boyfriend Dr. Kaplan  🙂  As I sat in the “Green Room” of the NBC Charlotte news studio this week for over an hour with Dr. Javier Osterheld (one of Isabella’s past oncologists), I found myself comfortable and enjoying the company. We were together to talk on air about the MIBG treatment room ISF is funding at Levine’s.  We talked about all things cancer, the hospital, family, beer and other things that might be tad inappropriate.  I found myself laughing and enjoying the company of a man who I wasn’t the biggest fan of several years ago.  Cancer can make you love and hate people all in the same week.  He is easier for me because we don’t have the 5 year history that I had with Kaplan.  He wasn’t there in the beginning or the end.

We talked about his training with Isabella’s Dream Team and I asked him how many half-marathons he had done in the past.  His answer… “This is my first.  And I’m doing it for you and Isabella.”  Maybe he was bullied into doing it at first, but maybe he’s just really an amazing guy and we lose that vision of these doctors when they give us horrible news about our children.  It brought me back to my ‘Why I loved Him’ blog post  about how you go through these feelings of total admiration for these people because your child’s life is in their hands.  You put this God-like complex on them and they don’t ask for that.  In the end, they really are just normal people who like you have jobs they love and are just trying to save the life of kids.  But they are also people who drink beer, and make fun of themselves and laugh and cuss… just like you.
I find that through Isabella’s death, new things come to life, like friendships with people you once hated that were really only trying to save her.  I can see them all more clearly now – and they are all amazing people.




Celebrating 10 years: She should have been a runner

Isabella Santos is a name that many people recognize in the Charlotte, North Carolina area. She has become synonymous with Neuroblastoma and other orphan cancers. Her parents started the Isabella Santos Foundation as a way of keeping her memory alive and help reach her wish of  ‘No More Cancer’.  As we celebrate 10 years of the foundation we thought it fitting to share with you the impact Isabella and ISF has made on the people who are a part of and support our growing organization. 

Children who are diagnosed with cancer are the smallest fighters, but they do not fight alone. Fighting alongside these tiny victims are the parents, siblings, relatives, neighbors, extended family, and friends. They are silent gladiators and resilient people who walk alongside these children and their immediate families. When a child is lost from cancer those supporters become the unseen victims and lose something, as well…. they lose what should have been.  It is these supporters we celebrate for helping us grow.

She should have been a runner.

“Volunteers don’t necessarily have the time; they just have the heart.” Elizabeth Andrew

Colleen on the left with Isabella

Today we introduce you to Colleen Hinsberg. She has known Isabella’s parents since their days at Lending Tree as co-workers. She has been part of the race since its conception and the Race Director for the past 4 years. It is her dedication, time, and passion that have allowed the race to grow and flourish like it has.  Colleen is working hard with her team to knock our 10th Anniversary Race out of the park.

So many amazing people are associated with The Isabella Santos Foundation. Some of these people have been there from the very beginning and others have been called to action once they met or learned about Isabella.

Tell us about your connection to The Isabella Santos Foundation and tell us how long you’ve known the Santos family?

Gosh it’s hard to believe that I have known them for over 13 years!  Stuart, Erin and I all worked together at Lending Tree. I knew them before they got married. I was one of the excited ones to learn that they were having a baby and then later that she was a girl. I worked with Stuart at 2 other jobs so I have been actively involved in the many events since Isabella was diagnosed.

Families faced with a seriously sick child meet the challenge in so many different ways. Erin and Stuart chose to not only fight for Isabella, but to create a foundation in her name that would bring awareness to Neuroblastoma and work to find a cure for all children.

Meghan and crew at the lemonade stand

When you first heard about Erin and Stuart’s idea for a Foundation what were your thoughts? 

I was thrilled. Before that point we had done a lot of things to raise money for Isabella’s treatment, a lot of which Stuart and Erin were giving to foundations that were supporting Neuroblastoma research. When they decided to fight the disease head on and form a foundation I knew they would do great things.  I had seen what they were accomplishing just within their network and how people were so willing to help. I knew that an official foundation would be huge.

Are you a part of the Isabella Santos Foundation today? If so, in what way are you involved?

I am on the Board of Directors for the Foundation as Race Director. This year (the 10th anniversary race) is going to be my 4th year in this role.  For all 10 years I have been actively involved with the race, helping coordinate all of the details that go into an event this large.

Volunteering is something that is done by people who clearly understand how important giving back is. Isabella seemed to understand that at such a young age. She inspired so many people to take action. Isabella made a lasting impression on so many people. Not only the people who knew her personally, but on countless strangers and readers of Erin’s Caring Bridge posts.

Colleen with Isabella, Stuart, and other volunteers at City Search

Can you share your fondest memories of her? 

My fondest memories of Isabella all wrap around how open and kind she was to my daughters. Through the years they would see her as we dropped food at the house, attended events, meetings and of course on race day. Isabella always was cute and polite and most importantly kind to these girls who were not part of her inner circle. Isabella somehow still seemed to know that Julia and Meghan were involved and 100% onboard with her mission to Beat Grow Live.   At the 2011 race, when it was pouring down rain and Isabella wanted to stop and dance in the rain, she grabbed my girls to be there with her.  That’s such a testament of who she was- Open, Kind and willing to stop and dance in the rain with whoever would join her.

How has Isabella impacted your life?

She hasn’t just impacted me; the support of the foundation is really a Hinsberg family effort.  Because of Isabella my family now has a cause. We now work hard to support something outside of our day-to-day lives. We take action- we run, we volunteer, we hold lemonade stands.  We speak in public- to classmates, to running groups and to local supporters. We see the satisfaction in paying things forward. We love purple and we look for dragonflies. We appreciate life and realize how precious it is. We learned to grieve, and we decided then to join the Santos Family in putting in lots of personal effort to find a cure for Childhood Cancer so no one else we know has to go through that kind of loss. 

Julia getting ready to raise money

How do you feel ISF’s call to action has made a difference over the last 10 years?

10 years ago the call to action was mostly a show of support.  A sense of “We are with you as you go through this horrible thing”. Even in the early years, Stuart and Erin decided that the shift need to be made to “this is bigger than us, we need to do more”.   We can all see what a difference that has made.  ISF is now one of the most well-known and respected charities in Charlotte.  The number of people who are supporting and even more importantly, passionate about the foundation is just amazing to see- not just here but across the county.  I am in awe of the amount of money we have been able to donate to Neuroblastoma research and other organizations that help children with pediatric cancer.  And year after year, when we ask our supporters are here to help. They know we are giving our all to make a difference and are happy to be a part of it.

Originally, the 5k for Kids Cancer run was a way of raising money to offset the financial burden that Isabella’s parents were faced with due to the overwhelming costs associated with saving Isabella’s life. It has turned into a major Charlotte event, adding a 10K and is raising hundreds of thousands of dollars.