Tag Archive for: pediatric cancer

True Definition of a Mother

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She was amazing. We received the worst news of our life and she didn’t flinch. She took a leave of absence from work and moved her life into our home. She did all the unglamorous tasks. She changed diapers, she did dishes, she gave baths, she made dinner, she did laundry, and she stepped in when I had to step out. She also lived with Stuart and I during the most stressful time of our life. That task in itself was worthy of a medal.

She put her life on hold. She didn’t get paid. She CANCELED her own wedding, due to a relapse of Isabella’s.

She traveled with me to New York. She kept my mind busy while I had to wait for scan results. She raised Grant. She raised Sophia. She raised me.

She disciplined Isabella, which was a hard thing to do. She kept her in line and knew when to be her Grandma and when to be her Mom. She kept me in line and knew when to be my Mom and when to be my friend. No matter what Stuart and I were going through, she had my back. She would yell at him when I couldn’t and try to fix us when we were unfixable.

When Isabella would relapse, she would be my first call. She would talk me off a ledge and help me make arrangements. I would go to bed that night and wake up to a doorbell ring. There she would be standing on my front porch. She would drive through the night 12 hours to be there. I would break down when I saw her because she always knew what to do without asking.

She was as close as you could be without being right there. Which is a hard thing to explain. She wasn’t making the decisions but she was implementing them. She was giving medicine and catching vomit in buckets. She was rubbing backs and changing bandages, but she was never in the spotlight. She never wanted to be. She would just tell me over and over how we were making the right decisions and that we were strong and how proud she was of me but honestly she was right there along side us.

She took the lead on dangerous radiation treatments when Isabella relapsed in the brain. I was pregnant with Sophia and it was too dangerous for me to be around that amount of toxic radiation. So she stepped in and slept behind a lead wall, allowing her own body to be radiated so that mine wasn’t affected.

She was Isabella’s second Mom and Isabella knew that Grandma would take care of her. Isabella adored her and often times would want to be with her over me because they just had this connection. It wasn’t just Isabella either. She raised Grant. And if you see them together today, it’s a bond that is unlike anything you have ever seen. The love he has for her is close to that of a Mother and it should be. She was his Mom.

She was all I had when I felt like I had nothing. I could tell her anything – no matter how bad it was. Some days I was ready for Isabella to die and she is the only one I could say that to. She would hold me up when I was ready to fall and held my hand through everything. She is the only person that I allow to give me honest feedback in my life because she is the only person in my life that knows the true me. You also never realize how much you want your Mom to crawl in bed with you when you are sobbing until she does it. She never said anything. She just got in bed and let me cry on her.

And in the last week of Isabella’s life, it was painful for me to watch Isabella shut her out. No one was allowed to be with her except Stuart and I in the end. My mom had been there from the first day to that moment and Isabella put up a wall with her. My mom was forced to lay with her only when she was asleep. But she took every single minute she could. She once again took on the most unglamorous tasks like cooking corn casserole when Isabella craved it, only to watch her not eat it. “It’s okay,” she would say to me. “I’ll do anything she wants.” We even made her drive to get Grant the morning Isabella died. We should be shot for what we put her through.

I regret all the horrible things we made her do during those years. But if you ask her, it was the best gift we could have given her. It’s hard to put into words what people like her do for your life. Sometimes you are just given someone in your life that is a true blessing and you can’t imagine your life without them. I seem to shut out everyone in my life these days. But my Mom is the one person that will never see my wall. She is the person I strive to be in my life and what I get from her is the definition of a Mother’s love. I will never fully understand how she was able to give so much to us, or why she did it. But as I grow as a Mom, I start to see that I would do the exact same thing she did because the love you feel for your kids makes you do things you never thought were possible.

My Mom is the best person I have in my life. I love her for what she did for me, for Isabella and my family. She is the true definition of a Mother. I can only hope to be half the woman she is one day.

ISF Funds The SADA Drug Delivery Platform with Memorial Sloan Kettering Cancer Center

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Erin and Sophia Santos, Dr. Cheung & the MSKCC Neuroblastoma team

Memorial Sloan Kettering Cancer Center in NYC is one of the top Neuroblastoma research facilities in the country.   Dr. Cheung, head of the neuroblastoma program, and his team are doing remarkable things. In December of 2016, Isabella Santos Foundation gave $202,000 to Dr. Cheung’s team to help push a research program, The SADA drug delivery platform, forward.  We thank you for allowing us to choose these programs that will help move the needle forward on something we feel is really important and a step in the right direction for research and treatment.

One of the difficulties with previous cancer therapeutics has been the inability to control off-target effects.  Children may have the possibility to beat neuroblastoma, but then die from unintended long term side-effects caused from the traditional chemotherapies that affect all parts of the body.  The SADA drug delivery platform was created to control drug delivery with such precision that toxicity only occurs where the drug is picked up by tumor cells, and not to normal bone marrow, the immune system, kidney or other vital organs.  This  novel technology has the potential to completely change the way we deliver strong medicines needed for children, where off-target effects could be devastating with long term consequences.

Isabella Santos Foundation is funding the construction of the proteins that target the tumor cells, and the testing of these proteins in the fight against neuroblastoma.  If successful, this will not only make treatments safer and more effective for neuroblastoma, but can be transferred to use in all cancers.  

Isabella was treated at Memorial Sloan Kettering and we have seen the remarkable programs Dr. Cheung and his team have worked on.  Isabella ran out of treatment options.  She died because her cancer has very little funding.  We continue to work to change that.

Dr. Cheung

ISF Funds Frontline MIBG Therapy with the Children’s Oncology Group

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In this picture is Isabella in MIBG therapy at CHOPT in Philadelphia. Isabella not only received this as a end of life treatment instead of a frontline therapy… she had to travel away from her home and family to receive it. This will be a game changer for kids fighting.

In 2016, funded a Frontline MIBG Therapy project with the Children’s Oncology Group (COG). The purpose of this project was to determine the effectiveness of pulling MIBG therapy, which was traditionally used as an end of life treatment, to the frontline of therapy for children with high-risk Neuroblastoma. We are excited to announce, thanks to your donations – this trial is ready for children across the country. Starting in August of 2018, the COG will start the process of enrolling over 800 children with high-risk Neuroblastoma and will enroll children over the next 3 years. Tomorrow night, Dr. Peter Adamson, Chair of the Children’s Oncology Group, will be with us here is Charlotte to speak at a private event about the advancement of the program. Can’t wait to share more updates.

This is great news for Charlotte because as you know, ISF has agreed to fund the creation of a MIBG at Levine Children’s Hospital! We are inching towards our goal of $1 MILLION DOLLARS and anticipate breaking ground in 2018. What this means is that in just one year, our local children will benefit from a trial that YOU supported in a room that YOU built. This trial hopes to reduce the number of children who relapse and reduce the burden of late effects of therapy. Amazing.

This is due to your support. So thank you. Children of Charlotte thank you.

We were so proud to have been able to donate a total of $175,000 to the COG through three of their children’s cancer trials and programs.  Learn more about the programs YOU helped us fund through the COG.

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.