Tag Archive for: neuroblastoma

Ethen’s Fight

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May 23, 2018 Update:
NO TRACE OF CANCER. Ethen had scans last week… and they were clear.
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April 29th Update:
“Tonight we put sprinkles in the pancakes and lit some candles to celebrate this little guy finishing his protocol for Stage 4 High Risk Neuroblastoma (and please forgive the cheesy singing). In many ways it feels anti-climactic – no ringing of a bell, no bubble parade from nurses – just the five of us who have walked through this storm together. In fact, he will actually get his last dose of accutane as he sleeps tonight and has no idea what any of this means. But he loves candles and pancakes and singing and his people. Tomorrow morning we meet with a research team to discuss his next two years of treatment on a clinical trial that will hopefully start in a month. It doesn’t ever really end and we have learned in this new “world” that nothing is ever certain. So we will celebrate every victory, kiss his head a thousand times a day, and accept every snuggle we can. And we rejoice that this strong kid has survived this past year and is thriving right now. (See the video at the end to see what he finally decided to do last Sunday to melt our hearts – the kid is confident to walk almost anywhere now!)  “Ethen’s Mom
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April 6th Update:

“A year ago today we sat in “the 8 room” of floor 11 at Levine Children’s Hospital and heard the final diagnosis of Stage 4 High Risk Neuroblastoma. The team had prepared us so well to hear it and even so that lengthy discussion filled the room with an immense weight and tension. I remember exactly where Dr O sat and that he spoke with just the right combination of frankness and compassion, but the rest of it is a blur in my memory. I heard words and categories that took me months to understand, but what I did understand was that all of what he said meant this was the bad kind, the aggressive kind, the kind that had already moved to other areas of my child’s body. By that point Ethen was already becoming unrecognizable in look and behavior due to fluids, pain medication and effects of multiple lengthy anesthesias over the week prior. Three days later he would be in the PICU. We knew our child was sick. So when Dr O said we should start chemo that afternoon, we were fully on board.

Today Ethen is here and playing, and as you will see in the post below, he is doing much more. The song my husband posted on the blog is perfect. We are so grateful for today and are seeking to trust in the days ahead no matter what comes.”  -Ethen’s Mom

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March 2nd Update:
This sweet and silly cancer fighter turns 2 today! Please help us wish Ethen Happy Birthday. Ethen’s mom says that Ethen is “full of silly and fully aware of how to get someone’s attention and be ridiculous.” Ethen is still doing well and getting strong each day. He is currently continuing his Accutane treatment, which can make him act a little funky at times. But he is making it through!
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February 9th Update:

Positive news on this peanut to kick off Friday. Ethen went back home earlier this week and is doing very well after taking a big turn in the right direction. Ethen’s mom mentioned to me that the support they have felt is remarkable. Keep praying and lifting their family up. We appreciate our supporters and what they can do for our community and beyond!

Although Ethen will not be doing any more antibody treatment, he will continue on Accutane treatment followed by scans to check for relapse prior to scheduling surgery to remove his Hickman line and G-tube. Then Their hope is to be able to enroll him in a DFMO test trial. If you remember, DFMO was part of a trial in which you helped us fund starting out of Michigan. Results and ease of of the drug on patients have been incredible.

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February 5th Update:
Happy to update that Ethen is starting to return to his silly self. With slight improvements since we last posted, the medical team extubated Ethen last Monday. By Wednesday, the PICU team had weaned Ethen’s oxygen and pain medication enough that they felt comfortable releasing him from PICU to the oncology floor. The medical team continues to monitor his oxygen as well as Ethen’s weight. Ethen’s parents have decided to not undergo any further antibody treatment due to the life-threatening effects it had on the little guy.
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January 23rd:
We want to introduce you to Ethen, a pediatric cancer fighter from North Charlotte, who is in need of lots of thoughts and prayers. Ethen was diagnosed with stage 4 neuroblastoma in April of last year at 18 months old. In the past 10 months, he has endured many rounds of chemo, a major tumor resection surgery, 1 bone marrow transplant, radiation, and 2 rounds of antibody treatment. That’s a lot on a little body.
 
Last week, Ethen started his 3rd round of antibody treatment. Ethen developed capillary leak syndrome, which affects his breathing. Due to respiratory distress, Ethen had to be intubated and rely on a ventilator. He has also developed cytokine-release syndrome, which is another side effect of antibody therapy.
 
Ethen’s lungs have been considerably damaged so it will take time to repair. The fluid and inflammation have reduced his lung volume and functionality. Throughout the last several days, Ethen has taken steps forward and then some steps back. After removing his breathing tube, the medical team had to intubate him again and put him on a oscillator.
 
For those looking outside in and have not personally experienced a child’s fight with cancer… one would think you receive chemo and it makes you sick. When the reality is the impact of adult-like treatments are extremely difficult on little bodies like Ethens’. A child’s body has to fight really hard to deal with various cancer treatments; therefore, not only do they have side effects during the treatment, but forced to face continuous life complications due to the harshness of the treatments on top of that.
 
Please help us lift Ethen and his family up. Being so dialed into Isabella’s care and near her family… I can attest that it makes a difference. The family can feel it. We will continue to share Ethen’s progress. You can also stay updated through his Ethen’s Fight  Facebook page where his parents post updates via their blog.

New Year, New Look, New Life

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Written by Erin Santos, Isabella’s Mommy

January 1st, 2018 just seems unreal.  What seems more unreal is 10 years of ISF behind us.  We started out that first year when Isabella was diagnosed and raised $7,000.  Our 2017 books are closing and we hit the goal we had in place of 1 million dollars raised.  Unbelievable.  It makes me wonder where this little “project” of ours is going to go.  With an even bigger goal in 2018, as well as a new treatment room in construction, in her name, opening its doors later this year, I know there is so much more ahead of us to accomplish.

With growth, comes change… some good and some bad.  Isabella will always be the true Founder of this organization and her face will forever be tied to all we are doing.  However, as a growing foundation, we have realized that giving in her honor the last couple of years has propelled us to success we never would have imagined.  But now, we want to refocus our organization on the children we are trying to save today.  I have always said there is an Isabella in every city.  And as we expand into new cities and markets, it is becoming painfully obvious that there are children everywhere who are in the fight of their lives.  We want to start introducing you to these children, their families and their stories.  They need your help to fight this disease that still has a survivor rate that would break any parent’s heart.  We also want to start educating our supporters on other rare cancers that can benefit from the treatments we are funding.  Neuroblastoma is scary, but there are other cancers out there with ineffective treatments and without organizations like ours in their corner, kids have very little chance for a cure.  Every child’s life is worth saving and we want to spread our wings a little more with your help.

I’m excited about the upcoming changes in our focus because even I need to put my memories of Isabella in a safe place.  For years I told myself that we were different.  We could handle loss and turn this horrible tragedy into something that could potentially change the lives of others.  While we are doing this, unfortunately, it came at a price.  Death changes people and we are not exempt from this.

I always look back at the person I was before cancer, during cancer, and even during her death.  I’ve referred to it as a movie I watch because that person seems unrecognizable to me now.  Her death has made me independent and strong, focused and determined.  But it has also made me closed off and cold at times.  I can be a hard person to get to know because her death has built a fortress around me.  I find solace in being alone, my anxiety can take me over completely and I find at times that I want to run from everything.  While losing a child makes you realize how important every minute is with your other children, sometimes it comes at a price to others in your life.

I don’t know why we hurt the ones we love the most.  We just do.  And sometimes we can’t stop doing it.  Death changed me a lot, and it changed Stuart too.  The person you once went to battle with becomes the new battle.  You find yourself just trying to get through the day and the other person becomes the casualty of this.   One thing remained consistent through our grief, our love for her, our kids and all that ISF is accomplishing.  But, I think we have just hit a time in our life when we want to find happiness again, and sometimes that happiness isn’t together.

While I feel like this is a very personal subject, I have never shied away from my life being an open book.  I felt like it was important to let the supporters of ISF know that nothing is changing with ISF.  Even though Stuart and I are no longer together, we still stand together and will do everything we can to continue to grow the foundation and make a difference in her name.  I love when we are together at an event and people say to me, “You would never know about the changes behind the scenes in your family.  You guys seem stronger than ever.”   Maybe because the love that kept her alive for so long will always be there for each other because we know the other one has been to hell and back.  There is too much history to be any other way.  So that is all you will see.  We will always be together for her.

We hope these changes will not impact the support for all we are doing together.  My belief is this is just a new start to a big year ahead and we are so proud of what we have accomplished.  This is just the beginning… maybe just a new beginning.

I HOPE…

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There are so many things we HOPE for.  This poem (author unknown) sums up all our HOPES and the reasons we continue to fight pediatric cancer.  We posted this poem earlier in the year and not only did it become our most popular post of 2017, but of all time.  As we wrap up our 10th year of the foundation, we thank you for fighting with us, for supporting us, for crying with us, for believing in us…. and most of all for helping us continue to keep Isabella’s legacy alive as we fight childhood cancer.  It started with a girl… and she is changing the world!

We hope you and your family have a wonderful (and safe) New Years Eve and look forward to conquering our HOPES together in 2018.

Isabella after brain surgery

I HOPE…

I hope you never have to hear the words, ‘Your child has cancer.’

I hope you never have to hear, ‘The prognosis is not good.’

I hope you never have to prepare your child to undergo radiation or chem

otherapy, have a port surgically inserted into their chest, be connected to IV poles.

I hope you never have your child look at you with fear in their eyes and say, ‘Don’t worry Mommy, everything will be okay.’

I hope you never have to hold your child as they vomit green bile.

I hope you never have to feed them ice chips for lunch.

I hope you never have to watch the ‘cure’ you pray for slowly take away their identity, as they

lose their hair,

become skeletal,

swell up from steroids,

develop severe acne,

become barely or unable to walk or move,

and look at you with hope in their eyes and say,

‘It’s going to be okay, Mommy.’

I hope that you never have to stay in the hospital for weeks, months, or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.

I hope you never have to see a mother, alone, huddled, in a dark hospital corridor…crying quietly, after just being told, ‘There is nothing more we can do.’

I hope you never have to watch a family wander aimlessly, minutes after their child’s body has been removed.

I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.

I hope you never have to see a child’s head bolted to the table as they receive radiation.

I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale, bald, and scarred.

And they look at you with faith in their eyes and say, ‘It’s going to be okay Mommy.’

I hope you never have to face the few friends that have stuck beside you and hear them say, ‘Thank God that is over with,’…because you know it never will be.

Your life becomes a whirl of doctors, blood tests and MRI’s and you try to get your life back to ‘normal’.

While living in mind-numbing fear that any one of those tests could result in hearing the dreaded words…

‘The cancer has returned’ or ‘The tumor is growing.’

And your friends become even fewer.

I hope you never have to experience any of these things…Because…only then…

Will you understand…

(author unknown)

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.

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.