Tag Archive for: childhood cancer

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.

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.

Running to Zero

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Screen Shot 2016-07-31 at 5.28.01 PM#Runningtozero

I 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.

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

#runningtozero

Donate. http://www.firstgiving.com/fundraiser/isabellasantos/2016-isabellas-dream-team

– Isabella’s Mommy