Tag Archive for: charlotte neuroblastoma foundation

Ports, bald head and scars…

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“This picture that was taken of Isabella always makes me smile. We had just moved back to Charlotte from New York City in the fall after a brain relapse that sent us into a tailspin. The mass on her brain forced emergency surgery, followed by a chemo and radiation regiment that meant moving our whole family for 4 months to the city. If you look closely, you will see the port that was placed just under her skin on top of her head. This port was connected to veins in her central nervous system so a drug called 8H9 could bathe her entire brain and spinal cord with a life saving treatment. (This 8H9 drug developed by Dr. Kim Kramer at Memorial Sloan Kettering Cancer Center has since received national recognition as one of leading new drugs for relapsed neuroblastoma.) In this picture Isabella has yet to receive her first dose of 8H9, but the relapse that once frightened us to our core had 4 months of treatment under its belt and was doing amazingly well. This port would be used in just a couple of months while Isabella was in remission to kill any microscopic cells that may still remain. I was there for a test treatment and was blown away as she calmly sat in her hospital bed while Dr. Kramer inserted a needle into the port and sent fluid through her CNS to ensure the port was working correctly. She looked at me with wide eyes as I sat next to her holding her hand. After 15 minutes of treatment, the needle was removed and she went about playing per usual as if nothing had happened. She would receive 3 of these treatments in the next couple of months but we decided as a family to remove me from the treatment due to possible radiation exposure. My Mom of course stepped in exposed herself, selfless as always. We wanted to have another baby and felt like it was safer for me to be away. I got pregnant that January.
 
That little port never bothered her as you can tell from this smile. As a parent your eye always caught it, but you knew it was imperative to her survival. The port stayed with her the rest of her life. I always wished they had taken it out, but like her bald head and scars… it just became part of who she was. We took her lead and just became happy to have every day with her – who cared about that port? She sure didn’t.” -Isabella’s Mommy
 
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He wasn’t there in the beginning or the end…

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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.

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Celebrating 10 years: She should have been a runner

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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.

Package pickup for the race

Please describe the changes in the 5K run over the past 10 years.

10 Years ago the race consisted of 175 people, most of us pushing strollers. We were there to show support in any way that we could.  Since then it has become more of a full morning event. We have the amazing silent auction and raffle – it’s a huge part of the day now with over 200 items to bid on.  The kids zone gets bigger and better each year- we have had to get creative on this one as so many of the kids that still support the foundation today are getting older so now you will see gravity turners and rock walls in addition to face painting and craft activities.   The race itself is now one of Charlotte’s best. We offer a 10K, 5K and a Kid’s 1- mile fun run.  We have cool finisher medals (wait until you see this years!!) and great food and music after the event.  We expect over 3500 people to be with us this year celebrating 10 years!

Looking back at where ISF began and where it is 10 years later, with its numerous arms that have developed since its conception, what are you most surprised about and proud of?

I am most surprised and proud of the way that Erin and Stuart have been able to share their personal story in the name of fighting cancer.  I would have never dreamed 6-7 years ago that Erin would be the CEO and voice of a major cancer fighting foundation.  Stuart was the talker.  Erin had written so beautifully and shared herself and Isabella so honestly of course people followed her.  When she started doing little speaking engagements I watched the crowd’s reaction and knew she had “it”. Not a lot of people can be both writers and speakers but Erin rocked it.  

Stuart, Erin and Grant each tell their story differently but effectively.  They could have buried their heads and simply just dealt with their pain and grief, instead they, as a family, embraced the fight and told their story so all of us would follow.  I remember as the events and speaking engagements got bigger thinking- wow they are really doing this, we as a foundation are really doing this! The pride I feel year after year seeing the impact are making is beyond measure.

Sending off purple balloons for Isabella

How has your outlook on life changed and what life lessons have you taken away from having lost such a special little girl?

I take time to dance in the rain. I cherish my friends and family knowing that life can be shorter than we want it to be. I am dedicated to a cause and I support people who have causes of their own.   I take action and push myself outside of my comfort zone. I am thankful that I have been a part of this journey.  It has changed my family and me more than I could ever say here on paper. 

For those of you who are not familiar with Neuroblastoma: Memorial Sloan-Kettering Cancer Center(MSKCC) defines Neuroblastoma as a rare cancer of the sympathetic nervous system – a nerve network that carries messages from the brain throughout the body.  It is usually found in young children and is the most common cancer among infants.  These solid tumors – which take the form of a lump or mass – may begin in nerve tissues in the neck, chest, abdomen, pelvis, or most commonly, in the adrenal gland. They may also spread to other areas of the body, including bone and bone marrow.  The cause of Neuroblastoma is unknown.   Learn more about Neuroblastoma.

Running To Zero

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Isabella’s Dream Team week one is complete.  With our first group run behind us, one number gave us the inspiration needed behind every step, every bead of sweat and every sore muscle.  1843.  The number of missed kisses.  The number of missed goodnights.  The number of days since Isabella passed.    This season our team will run with an updated number on their arms every Saturday.  To remind us why we are running.  We run until that number is zero for parents of children fighting cancer.  It’s not to late to join.

Read the #Runningtozero blog below… written by Isabella’s Mommy around this time last year.  And why she started counting days.

 

#Runningtozero

Screen Shot 2016-07-31 at 5.28.01 PMI tossed and turned in bed. I knew my mind was racing. I had this feeling a lot back in the day and I know how to fix it. I had to write. I knew that if I did my mind would settle and I could sleep. But the “new” Erin convinced myself that my anxiety was due to the Dream Team 6 mile run at 6:30 am the next day. It was just nerves that I would oversleep or worse, not be able to do the run.

My mind and body tossed from 10:30 pm – 1:30 am.

I woke at 4:30 am and I knew it wasn’t running nerves. The day before while shopping I received a call from a new friend. Her Granddaughter just received results from recent scans and the neuroblastoma was aggressive, although I not sure aggressive accurately describes it. The neuroblastoma had become deadly. Palliative care options were given due to the rapid progression of the disease.

I tried to remain calm with the news because at this point in my life, I know that Doctors are really just guessing. You learn this when you too, have been given this option several times – yet your own daughter proves them wrong and makes a comeback. These Doctors are not God and you learn this the hard way. I gave the best advice I could give.

Tell the parents to read their daughter. If she wants to fight – then fight. If she is done, they will know and then the fight will be over.

We read Isabella each time we got devastating news. Doctors said she was done but her light showed “Green” so we fought. Sometimes it seemed “Yellow”, so we would cautiously continue. But when it turned “Red” for the first and only time – we stopped. She died quickly.

But I found myself Friday night at Nordstroms, crying. Sad and Angry.

It feels like we just made our decision. It was just yesterday right? I found myself at 4:30 am counting days.

1494Screen Shot 2016-07-31 at 5.40.54 PM

There is no way.

I began to freak out that another mother might soon be counting.

1 is the hardest number. But oddly 1494 still feels hard. When you see that number it may seem like a lifetime ago. But for me, it feels so recent. It’s 1494 missed kisses, missed goodnights, and missed smiles. I’m sure that number can be a hard motivator for some to take action. But to me, that number is as motivating as ever. Especially during these hot summer months when every number we see kills our motivation.

99 degrees, 100% humidity, 13.1 miles, 6:30 am, $500 fundraising goals. You may begin to wonder why you are doing this to yourself?

1494. That number motivates me because it’s an awful number. And next Saturday that number will be 1501. My number will continue to grow this season and I know that everything I’m doing, every time I ask for a donation, and every mile I run in this heat is so that someone like me will not have to write that number on their arm.

I will run and continue to ask until that number is zero.

#runningtozero

Isabella’s Mommy

Celebrating 10 years: She should have been a best friend

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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 best friend.

“It’s hard to forget someone who gave you so much to remember.” Unknown

Today we introduce you to Stephanie Foreman or Miss Stephanie, as Isabella called her. Her daughter Solei was Isabella’s best friend.

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.

Isabella and Soleil

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

My connection with the Isabella Santos Foundation is very connected as our daughters met their first year at preschool in the “two’s” and became best friends right from the jump. We are talking roughly a decade ago.

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.

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

My first thought was it was a must. Having your child diagnosed with such a vicious cancer, the only way to go was to raise awareness and immediately bring attention and funding to this horrible nightmare they were facing.

Are you a part of the Isabella Santos Foundation today? If so, in what way are you involved? If not, what took you away from it?

As a single parent of two my schedule is pretty complex, but each year at the ISF 5K Soleil, Ciel and myself volunteer and try to help out where we can. I give blood when possible and definitely spread the word to others who know us, Isabella and her story.

I will say I am beyond proud of Erin, Stuart and the whole ISF team and I have watched this foundation grow from zero to the now magnitude of this foundation. Its truly incredible what they have accomplished. Wow.

Moments we have with our best friends stay with us forever.  We can recall the sleepovers and nighttime whispers in the dark, as not to wake up mom and dad. These first friends inexplicably shape who we become. They never leave your memory no matter how far away you wind up living or how out of touch you become as the years fly by. 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.

Isabella and Soleil

Can you share your fondest memories of her? 

That question is a little hard to answer as I have many. Isabella’s laugh was infectious. Memories of the sleepovers and hearing IB and Soleil giggling upstairs in their princess dresses. The CD player always on in the playroom and they would have little dance parties and act out their favorite disney movies at the time. Sitting around my kitchen table and IB always making it very clear on her likes and dislikes of vegetables, as I would try and convince her otherwise…never worked lol. Our trips to Oak Island and just swinging on the porch swing with her and watching IB and Soleil in the ocean on the boogie boards. Out of all the memories what sticks with me the most was our “secret handshake”. We had made this up very early on and whenever we would see each other, IB would always grab my hand for our “secret handshake” and we’d wink at one another. Isabella made sure to let me know not to disclose this handshake to anyone. It was a secret, it was ours, and always will be.

How has Isabella impacted your life?

In more ways than I can even explain. The biggest impacts of all are strength, the courage to keep going , and faith. To this day I am still in awe at Isabella’s strength and will. What I witnessed, the horrible treatments, medicines, side effects, scans, changes to her body, losing all hair and so much more…and regardless…she kept going and going. Her courage was beyond what I knew courage to be. Different hospitals, cities, treatments, doctors, different environments and through all of that, she had to courage to keep going. I had faith before her passing but after that day of June, 28, 2012…it all changed. I definitely struggled with the “why God” “is there a God” “if there is than why would this happen”, all these questions. My faith now is actually stronger because of Isabella. There are too many signs and unusual events that happened to me after her passing. Some that can not be explained. All I know is what I personally experienced and now know that there is a “in between” and a “hereafter”. Isabella made these impacts more than a reality in my daily life.

Isabella, Soleil, Ceil and Grant

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

Let me just state it like this. I can’t even go into my car dealership or grocery store without seeing a poster of the Isabella Santos Foundation. Their call to action has brought an enormous amount of attention and funding to the research of kids cancer. Their whole team has done an incredible job of marketing, fundraising and all around awareness to this wicked, horrible and relentless disease. I have seen this foundation grow from day one and to see it now is a beautiful thing.

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.

Looking back at where ISF began and where it is 10 years later, with its numerous arms that have developed since its conception, what are you most surprised about and proud of?

The growth. Its incredible to be at the race every year and see the development and magnitude in growth and attention.

Isabella and Soleil

How has your outlook on life changed and what life lessons have you taken away from having lost such a special little girl?

Perspective on all aspects of my life. What I may be going through “at the moment” is NOTHING compared to what IB had to endure. I literally think of her every time I’m going through pain, hardship, stress…whatever it may be. Its puts EVERYTHING into PERSPECTIVE. If her little body and sweet spirit could endure all she went through….you better believe that I can put my soldier rag on and keep pushing forward!

Your relationship with Isabella was different than most. Why do you think you guys bonded so well?

We bonded so well mainly because I wasn’t Mom. I was Ms Stephanie. I was her besties mom that “may have” let her get away with a little more than Erin would have..lol. Staying up later at sleepovers, perhaps more sweets, being super silly and not caring who was looking, different aspects of things, there were many. We just clicked from the first playdate… she was my “Ibba” forever more.

Isabella and Miss Stephanie

When you came to see Isabella before she died Erin recalls that she couldn’t get you to look her in the eyes during that time. Why?

That day, to this very day was the worst day of my life. My grandmother passing and other family and friends in the past was beyond heart wrenching and extremely sad but to actually witness a seven old girl, my daughters best friend, a little girl who was like my own, and watch her take her very last breaths of life was something I couldn’t even believe was truly happening. Isabella had fought so long that I couldn’t even grasp that this was actually it. This was the day and moment she was leaving us. I held her hands, thanked her for being the best friend Soleil could ever have, asked her to watch over Soleil in her life to come, squeezed her hands and gave her our “secret handshake”. I could barely look at her as my heart was literally tearing into a million pieces. I had never until that day felt that kind heartache. I would wake up with panic attacks months after that. Knowing what Erin and Stuart had to go through witnessing their baby girl take her very last breath. It is unimaginable until you go through it or know someone who has. To this very day I have moments of going back to June 28th 2012 and get that feeling of despair all over again. My stomach sinks and I feel a void. What keeps me from staying in a sad place all the time is knowing that Isabella is beyond proud of her family and the accomplishments that have been made. Her passing is not in vain and because of it….lives are and will be saved.

How has Isabella’s passing affected Soleil?

Isabella’s passing has definitely affected Soleil. I guess to some you don’t realize the long term effects on a seven year old when her best friend passes away. Not only did Soleil endure the split of her parents a year and a half prior but then her best friend passing away. Separation anxiety and other issues has risen in the last few years and in journals and therapy sessions you really start to see how it has affected her. Thankfully to a few encounters and unique situations that have occurred in the last few years, her faith in knowing that Isabella is and always will be there to talk to and guide her is a beautiful thing. Soleil talks about her and lets all her friends know that Ibba was the “original” and “always will be” BFF.

For those of you who are not familiar with Neuroblastoma: Memorial Sloan-Kettering Cancer Center (MSKCC) defines Neuroblastoma as a rare cancer of the sympathetic nervous system – a nerve network that carries messages from the brain throughout the body.  It is usually found in young children and is the most common cancer among infants.  These solid tumors – which take the form of a lump or mass – may begin in nerve tissues in the neck, chest, abdomen, pelvis, or most commonly, in the adrenal gland. They may also spread to other areas of the body, including bone and bone marrow.  The cause of Neuroblastoma is unknown.   Learn more about Neuroblastoma.