Tag Archive for: neuroblastoma

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

Cancer Stole My Sister

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

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

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

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

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

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

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

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

Thank you.

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.

 

11 things raising a terminally-ill child taught me about parenting

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Written by Erin Santos, Originally published on village (2013)

When someone tells you that your child will not survive a terminal disease, you quickly begin to look at raising her in a whole new way. I lost my 7-year-old daughter Isabella to the rare pediatric cancer neuroblastoma in 2012. Here’s what I learned from raising my terminally-ill child—and how it’s helping me parent Isabella’s two younger siblings.

1. Be in the picture.When you know have a limited amount of time with your child, capturing moments is critical and you make sure that you’re not the only one snapping photos. The years go by quickly for healthy kids, too—don’t spend them hiding behind the camera.

2. Just let it go.So she wants to wear her best party dress to school or even dye her hair red. When your child is sick, these types of battles often don’t phase you. Yes, you need rules and expectation for your child, but some of these less important things can roll off your back if you’ll let them.

3. Doctors don’t know everything. We put a lot of faith in the medical community to have all the answers. And doctors are forever cautioning parents to avoid doing their own research on the internet—but you can and you should. You are smart enough to sift through what’s reliable and what’s not to get more information and possibly even find a new treatment or trial that might help. Trust that you are the best advocate for your child.

4.You can’t do it without help. Raising a terminally ill child is a full-time job, and the only way you get through it is allowing people to help you—whether it’s picking up groceries, mowing your lawn or ferrying your other kids from school. But all parents need a hand—don’t wait until you’re in a crisis to accept it.

5. Death is real and final. When you know your child is going to die, you really think you know what that means. But even as you’re going through the last stages of death, it’s hard to really grasp what’s going on. Losing your child forces you to face the issue. Everyone has to deal with death at some point—it’s important to find ways for your family to talk about it.

6. You can have more good times than bad. At times it can be hard to carry on when you know how the story ends. But with some effort, you can create amazing memories so that you laugh more than you cry. Take your kids to Disney World, have cake for lunch, play hooky from school to get a manicure. It doesn’t have to be all bad all the time—you can tip the scale in the right direction.

7. You’re stronger than you know. When your child is sick, you’ll do whatever it takes to help—changing wound dressings or organizing fundraisers to raise awareness for your cause. You tap unknown resources of strength and courage. Whatever obstacles you or your child face, don’t let anyone push you around.

8. Everyone has an opinion. If you chose to share your story with the community, your life will be under a microscope. People will question every step you take, every trial you enroll in and have no problem telling you what they think. “Have you looked into this hospital or this drug?” Everyone will always have an opinion on the choices you make and you quickly learn to ignore anything that’s just not helpful.

9. Take advantage of quality time. When you spend hours upon hours of hospital time in treatment rooms, overnight stays, emergency rooms and waiting rooms, you eventually learn to put down your phone or computer to try to be in the moment as much as you can. Time together with your kids can be meaningful and beautiful if you give it the attention it deserves.

10. You’ll be jealous of others. There are days when it’s impossible to watch families with healthy kids. Listening to a friend complain about their child’s ear infection will drive you mad. But jealously affects everyone and it’s important to try to move past it—or at least learn to live with it.

11. You WILL have regrets. No matter how hard you work, what drugs you try or where you take your child for treatment, things will eventually catch up to you. You will beat yourself up on which fork in the road you took that caused the ending, but in fact their time just ran out. Whatever difficult situation your child faces, try to limit your regrets and be confident in the decisions you make. You’ve done the best for your child that you can.

Erin Santos is a freelance writer, blogger and president of the Isabella Santos Foundation (ISF), a nonprofit organization dedicated to raising funds for neuroblastoma and other pediatric cancers. Erin and her husband founded ISF when their two-year-old daughter, Isabella, was diagnosed with neuroblastoma. Though Isabella passed away in 2012, the foundation continues its mission in hopes of saving other children. Follow ISF on Twitter and Facebook.

A version of this story originally appeared on iVillage.