Tag Archive for: charlotte pediatric cancer foundation

1st Annual Isabella Santos Scholarship Winner

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We are thrilled to announce our 1st Annual Isabella Santos Scholarship Winner, Leah Shelton.  Leah was one of many who submitted an application for a $1,000 community service scholarship.  Leah is graduating from Marvin Ridge High School and will be attending Vanderbilt University in the fall.  It’s pretty amazing to think that Leah was in 8th grade when Isabella passed away… and look how Isabella’s legacy has carried on.

Isabella Santos Scholarship Application, Leah Shelton

Karen Murphy (ISF Event & Volunteer Director) and Leah Shelton

Hand in hand, Destinee and I step out of the shiny black limousine. The repeated click of a camera signifies that her mother follows close behind, eager to capture Destinee’s rare display of affection. All eyes are on us as we walk the red carpet, and although Destinee looks stunning in her floral dress that I helped her choose several weeks prior, she keeps her head down. I speak some words of encouragement, not expecting a reply from my nonverbal honoree. But then, something so unexpected happens that I pause for a minute: she squeezes my hand. Small moments like these remind me why I engage in community service. It is so easy to forget the real reason for volunteering when so many are caught up in graduation requirements, college applications, and resume-building. I volunteer because I have abundant joy that cannot be contained to me alone. I want others to share in this joy, and I struggle knowing that there are so many people in the world that do not have enough reasons to be happy. Being a Youth Mentor for the Sandbox, an organization that locks arms with families of children with cancer or another life-altering illness, provided me the perfect opportunity to share my positive energy. AlthoughDestinee’s illness is incurable, helping her to forget about her troubles, even if just for one night during the Evening of Believing Prom, was one small way that I could help bring a little more light into the world. To most people in the “Marvin Bubble,” issues like cancer seem so far removed from reality that they are often treated as irrelevant. I am an optimist, downright Pollyanna at times, and I often fall victim to the superficial sense of security and insistently sanguine perspective that exists in our little bubble. However, volunteerism helps to keep me grounded, humble, and connected to issues like cancer that are of such global significance. My purpose in aiding an organization that works to combat cancer is not to minimize my positive attitude, but rather to help others in a way that spreads this positivity.

  • Varsity Dance Team (grades 9-12)
  • Student Council (grades 9-12): Sophomore Class Vice President, Junior Class President
  • Spanish National Honor Society (grades 10-12): Vice President
  • National Honor Society (grades 11-12)
  • Junior Art League of Waxhaw (grades 9-12): Create community art pieces, volunteer at community art events, and learn about new artistic media and techniques from local artists.
  • Youth Mentor for the Sandbox (grades 11-12): Support families of children with cancer or another life-altering illness. Work to meet a fundraising goal of $500, represent the Sandbox in community events, and serve as an advocate for honoree as they prepare and participate in An Evening of Believing Prom.
  • Domestic Violence Advocacy (grades 11-12): Initiated a campaign to spread awareness for teen dating violence at Marvin Ridge. Coordinated with Turning Point to put on a presentation for ninth grade health classes. Volunteer at Second Chance Boutique. Working to continue campaign this May.
  • Assistant Coach for Middle School Dance Team (grade 12)
  • Assistant Dance Teacher at the Dance District of NC (grade 12)
  • Isabella Santos 5K Run for Kid’s Cancer (grades 7-12)
  • Progressive Movement Arts Centre Senior Company Team (grades 9-10)
  • The Dance District of NC (grades 11-12)
  • Queen City Audio, Video and Appliances Community Heroes Award (grade 12)
  • Varsity Dance Team Heart of a Maverick Award (grade 12)
  • Universal Dance Association All-American Dancer (grades 11-12)
  • 2017 National Merit Commendation
  • Outstanding Achievement Award for IB Spanish (grade 11)
  • Varsity Dance Team Most Improved Award (grade 9)
  • Academic Excellence Award (grades 9-12)

I plan to attend Vanderbilt University in the fall, and I expect to major in either chemistry or biochemistry. While I am still unsure where my academic journey will lead me in life, I know that I want to use the knowledge I gain to make the world a better place. Whether that is by discovering a cure for cancer or merely making a patient smile, I hope to find ways to spread as much joy as possible.  I have been extensively involved with a variety of community service organizations throughout middle and high school, and I plan to continue this involvement as I transition to college and adulthood. Teen dating violence is one cause that is particularly important to me, and I have spent the last several years spreading awareness and volunteering for a domestic abuse advocacy organization. As I begin a new chapter of my life next year, I hope to continue to empower young people to have healthier relationships. There is no way to “solve” domestic violence; however, by educating people about the warning signs, the prevalence and severity of this issue can be drastically reduced. In college, where many sexual assault cases go completely unnoticed, I hope to be the voice of those who are too afraid to speak, advocating for everyone’s fundamental right to love and respect. The best way to encourage others to have a positive impact on their community is to lead by example. Positivity is contagious, and if I continue to show those around me that service is a fun and rewarding experience that fosters inclusion, expands one’s global view, and provides an opportunity to apply academic learning to genuine human needs, I believe that they will be inspired to do the same.

The most critical way by which ISF can inspire teens to make Isabella’s dream a lifelong passion is to encourage them to create personal connections with cancer patients. I remember cheering on Isabella while volunteering at the Isabella Santos 5K with the Marvin Ridge Dance Team. She had just dyed her hair red so she could look like Ariel, her favorite princess (and mine!) Isabella was not able to attend the subsequent races, but the stories I heard of the profound effect she had on those around her impassioned me to promote this worthy cause. One of the most eye-opening experiences of my teenage years was serving as a youth mentor for the Sandbox. Earning the opportunity to form such a strong relationship with a child battling a chronic illness increased my awareness about those who face adversity every day, and this motivated me to continue to make a difference. In this way, these children became more than just statistics or sob stories in a magazine. They became real people, inspiring characters, who astound me every day with their incredible strength. ISF should create opportunities for youth to hear personal stories and interact directly with kids and families that are impacted by cancer. The presence of the Santos family in the Marvin Ridge community has always kept this cause in the forefront of my mind, so I believe that others will feel the same way if they can have a similar experience. Teens are always looking for opportunities to volunteer that are accessible and fit into their busy lives, therefore ISF should look for ways to tie service and fundraising into things that teens are already doing like sports teams and clubs.

First Quarter Fundraising Update

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We are excited to announce that The Isabella Santos Foundation has raised $260,000 in the 1st quarter of 2017. We have set a goal of raising ONE MILLION DOLLARS in 2017 for our 10th anniversary.  Your support will help us get our message of hope to more people than ever before and generate much needed research and treatment options to eradicate childhood cancers.
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It’s amazing to look back on where we were 6 years ago before Isabella passed away…   “I’m proud of our team and what we have done. Not only do we have the uphill battle every day but we do it in our own style and manage to keep it together the best we can. Not to mention the fact that while running uphill we have managed to raise close to $150,000 for various charities, mainly Neuroblastoma research. My mom and I were talking recently and my mom was saying how hard it is for her to understand all the good that Isabella brings to other people’s lives but how she has to suffer in the process. I’ve always struggled with this as well as I watch other children get to do all the “normal” things of childhood while she is hooked up to toxic treatments. But after thinking about it, I think of all the people in history that have suffered. But through their suffering, it brought something good. Maybe she is just one of those people in our lives that takes the bullet to make us all better people. Or maybe her suffering will help raise awareness and funds that will one day CURE all children. Who knows.” – Isabella’s Mommy, 2011
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Thank you to everyone for their passion and support.  It’s pretty darn incredible how far we have come.  We can accomplish so much if we fight cancer together.
Click here to learn more about donating to the Isabella Santos Foundation.

Your Donations at Work Fighting Childhood Cancers, $175,000 Granted

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The Children’s Oncology Group is the first line of defense for a child diagnosed with cancer–including neuroblastoma.  In 2016, we were so proud to have been able to donate a total of $175,000 to three of their children’s cancer trials and programs for 2017.  Next month, we are excited to have Dr. Peter Adamson, Chair of the Children’s Oncology Group, with us in Charlotte to speak at a private event.  We look forward to hearing more about the advancements of the trials and programs you helped us fund.  Below you can read what each children’s cancer trial or program entails.

FRONTLINE MIBG THERAPY  |  $100,000

We are proud to have donated 100K for a Phase 3 trial to specifically evaluate the effectiveness of frontline MIBG therapy for children with newly diagnosed high-risk neuroblastoma that will open in the summer of 2017. Up to 800 patients will enroll on this trial. A trial of this scale will not only answer key clinical questions regarding targeted therapies, but will also provide an unprecedented opportunity to evaluate novel biomarkers that may guide treatment for future patients. We hypothesize that rational selection of therapy based on results of validated biomarker studies will improve the care of children with newly diagnosed high-risk neuroblastoma, thereby reducing the number of children who relapse and reducing the burden of late effects of therapy. ISF will be supporting this study as well as the cost of supplying blood and tumor samples that will help us understand which children are most likely to benefit from MIBG therapy.

CIRCULATING TUMOR DNA  |  $50,000

Could you imagine if we could prevent some of the frightening processes that children have to go through just to detect cancer?  The treatments are tough enough so we are eager to see another option for these kids who are facing so much already.  By supporting Project Every Child in 2017, ISF is helping an exciting technology that has been developed within test tubes that will allow cancer to be detected through a blood test.  Circulating tumor DNA may provide a method for monitoring disease status during treatment and may be a means with which to detect changes in neuroblastoma mutation status without the need for invasive biopsies.  Currently, children are put through painful procedures as well as exposure to repeated radiation to determine if cancer is present in their system, which may no longer be necessary with this new technology.

PROJECT EVERY CHILD  |  $25,000

Project EveryChild is a single research study run by The Children’s Oncology Group that aims to capture the biology and outcome of every child diagnosed with cancer in the United States.  Participation is offered to every child diagnosed with cancer, no matter how common or rare the cancer may be.  The ultimate goal is to collect biospecimens, including tumor tissue, host, and when feasible, parental DNA samples, which are stored at the COG’s state-of-the-art biorepository at Nationwide Children’s Hospital in Columbus, Ohio.  These samples may then be utilized by any scientist in their studies to find new and improved cure for pediatric cancer.

Living a Life in 10 Week Increments

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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

10 Years in 10 Minutes

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10 years in 10 minutes. A glimpse of Isabella’s sweet soul, the legacy her parents fight to build to save children like her, and what the Isabella Santos Foundation is doing today in her honor to help kids with cancer.