Big Accomplishments for this Little Cancer Warrior

Over the past year, Madison was in the deep throes of battling osteosarcoma, a rare pediatric bone cancer.  In that same year, Madison, now age 6, learned to walk again, completed kindergarten, stole the heart of Duff Goldman from Kids Baking Championship and most importantly, beat cancer. 

That’s a big list of accomplishments for one little girl.

In 2018, over the course of 3 short days, Madison’s life swiftly changed. It all started with pain in her right leg and completely lost the ability to walk a few days later.  After immediately heading in for X-rays after what thought was a possible broken bone, a soft spot was found on her right femur. Immediately taken to Levine Children’s Hospital, Madison was later diagnosed with osteosarcoma in April of 2018 at five years old.  This type of cancer is extremely rare and almost unheard of in kids her age The solid tumor discovered took up to about three-fourths of Madison’s adolescent bone.

After several rounds of chemotherapy to shrink the tumor on her femur, she had surgery to remove her right femur and replace it with one from a cadaver. Fortunately, the medical team was able to remove most of the tumor and save both of Madison’s growth plates.

In February 2019, she finished treatment at Levine Children’s and has since had very positive scans showing no cancer! At about the same time of finishing treatment, Madison learned her Wish trip would be granted by Make-A-Wish Central & Western North Carolina Chapter.

Madison and her family just got back from her Make-A-Wish trip to Los Angeles.  She didn’t ask to meet Taylor Swift or go to Disney World. She wished to meet Duff Goldman, a silly and bald baker. And what happened? They became best friends of course! 

“Duff Goldman by far is the most genuine person alive. Duff and Madison hit it off immediately and she didn’t ever want to leave. One of the sweetest moments was when they got in a mini food fight. Duff covered her chef jacket with chocolate and jam, said you can’t trust a chef with a clean jacket. Madison never wants to wash it!” 

Madison and her family enjoyed baking time with Duff, exploring Universal Studios, riding in limos and exploring some of California’s yummy eats. “To think where we were a year ago. The whole trip was surreal. We made some pretty awesome memories that we will never forget, none of us will ever be the same.”

And that’s what Make-A-Wish does, they create life-changing wishes for children with critical illnesses. The positive impact wishes give to kids and their families are invaluable.

For the second year, the Isabella Santos Foundation ran an online March fundraiser in honor of what would have been Isabella’s birthday month, that fundraiser directly impacted Madison’s wish trip.  Make-A-Wish granted Isabella her wish and gave her the best days of her life as well as giving her family the best memories of theirs. Honoring Isabella’s birthday by providing the same for another cancer fighter is exactly what she would love!  

Thank you for supporting the Isabella Santos Foundation, we can’t express enough how much your support inspires us to do more for these cancer warriors and their families. You helped make a little girl’s dream come true and it will be something that will stay with her forever. 

Photos of Madison’s Wish Trip:

Surprise, it’s Christmas in July!

Ho ho ho! Surprise… it’s Christmas in July! Our ISF elves have been busy picking out the best toys for some extra special boys and girls. Today was the big day! Santa ditched his summer surfboard and broke out his sleigh to travel all the way to Levine Children’s Hospital with a special stop at the oncology floor and clinic. Thank you to all of Santa’s ISF elves and supporters who make magical days like today possible.

Huge thanks to Toys and Co. for helping our elves with the toys!

A Baking Wish Trip of a Lifetime

Madison is headed to L.A. to bake with Duff Goldman of Kids Baking Championship and you helped make that happen!  Remember Isabella’s Birthday Wish Fundraiser in March? Well, we love when things come around full circle.  The timing was just right when we gifted $6,000 to the Make-A-Wish Foundation to go towards a child’s wish… Madison’s wish!  

Isabella and Madison have so many similarities and baking is one of them!  To be able to use Isabella’s birthday fundraiser to help send Madison off on this baking wish trip is crazy!  It gives us goosebumps!  6 1/2 years ago Isabella was given the opportunity to bake cupcakes at Magnolia Bakery while in New York City for scans.  On this day her parents learned that Isabella’s cancer had spread to her brain.  Although her story did not have a happy ending, we work passionately every day to help other kids fighting cancer live out the happy endings they deserve.  And we appreciate you helping us do that in Isabella’s name.  

This morning we were able to attend Madison’s Wish Party at CPCC’s Culinary Arts Center.  Talk about kicking the week off right! We had the best time watching Madison and her sister, Riley, create pastries and pinwheels.  We visited with her family, the Make-A-Wish team and enjoyed watching her Wish Grantors, Peanut Butter & Shelly, smile among them.  Madison and her family head off to L.A. in 2 weeks and we can’t wait to share details and photos from their trip!  It’s beyond cool to be able to share the stories and show you the impact of your donations!

Madison was diagnosed with osteosarcoma in April of 2018 at five years old. She finished treatment at Levine Children’s in February 2019 and has since had very positive scans showing no cancer!  This brave girl has come such a long way in a very short period of time and is currently working hard to be off her walker and use her leg.  She has so much to look forward to! Read Madison’s Full Story

2019 Isabella Santos Foundation Scholarship Recipient

We are beyond thrilled to announce our this year’s Isabella Santos Scholarship Recipient, John Ford. John  was one of many who submitted an application for a $1,000 community service scholarship. John is graduating from Marvin Ridge High School next Monday and will be attending University of Georgia in the fall. John is on the youth board for Kids v. Cancer and has participated in lobby days, Curefest and Light the Night on behalf of Kids v. Cancer.  Please help us in congratulating John on this outstanding award and his entry to UGA.

By John Ford

My life is rich with volunteer experiences and I am not talking about my service to others, I am talking about those who have volunteered to serve me. As a young child, I was diagnosed with cancer. That diagnosis changed my life. My treatment began when I was 4 years old and continued until I was 9 years old. During that time, many people helped my mother and me as we navigated the harrowing road of pediatric cancer. Just a few of the volunteers that I had the privilege of knowing were the child life specialists who would spend their time playing games and doing crafts with me to ease the pain of my treatment, the therapy dogs and their owners who would visit to help me during those difficult days, the men and women of HomeTown Heroes who raised money to help us with medical bills and who took the children to a local Walmart on Christmas Eve to pick out whatever toys we wanted, and the volunteers at Make-A-Wish who granted my wish for a playset with a clubhouse, pirate flag and spyglass. All of these people touched my life in such profound ways that it instilled in me the desire to do the same for others.

As I grew older and discovered my passions, I realized that I wanted to devote my time to helping other children with cancer. I became a Youth Board member at Kids v. Cancer and have had the privilege of working with Kids v. Cancer to lobby the U.S. Congress for the passage of the Race for Children Act as well as thank them for the passage of the Star Act. I have also represented Kids v. Cancer at Curefest and a Night of Golden Lights at the White House. That was a very moving and humbling experience. I saw childhood cancer survivors, parents who had lost a child to cancer, and children that were battling cancer at the time. I realized how lucky I was to be standing among them and vowed to always strive to use my time and my talents to serve others.

Leading the lobbying team on behalf of Kids v. Cancer was the most meaningful service activity I have done so far in my life. Never before have I felt like I had more of an impact on the world than when I was able to cross my own cancer story with my passion for public policy to help lobby for legislation that has a direct effect on children suffering from cancer. At September’s lobby day, I discussed with the founder of Kids v Cancer, Nancy Goodman, an idea I had researched to add an option on tax returns to donate a portion of state tax refunds to pediatric cancer research. I suggested that we spearhead the initiative in North Carolina. She thought the idea was worth pursuing, not through Kids v Cancer, which should remain focused on passing legislation at the federal level, but put me in contact with people who can help me make it come to life. My next step will be to form the first state-level legislative initiative to pass pediatric cancer research legislation. Ms. Goodman’s words of “No one is doing this – you have to!” has been a driving force in my mind. I have big dreams to help the pediatric cancer community but I know that I need to start small and I am hoping that this first step will launch the change that I hope to see.

I believe that the key to involving local teens in the fight against pediatric cancer is awareness and knowledge. Most teens have no idea what pediatric cancer is all about. They have all seen the smiling faces of the children on the St. Jude’s commercials but they do not comprehend the pain, suffering and horror that envelop those children as they battle for their lives. Compound that with the fact that most teens think that they, and those who are younger than they are, are invincible. They don’t think that their younger sibling or neighbor could ever get cancer. Because of this, I think it is so important to make teens aware of the truth behind pediatric cancer and also the lack of funding available to fight the battle against this disease. If teens in our community understood the truth, I believe that they would rally behind this cause and I know from my own experience with Kids v. Cancer, that once you are involved, it does become a lifelong passion. So how do we educate teens? I believe the best way to educate them is through personal contact and social media. A campaign to spread the word about the Isabella Santos Foundation’s mission in our schools and through social media would have a huge impact. If current high schools students were to be given the tools and opportunities at school to become involved, I believe that a large number would do so. Today’s teens are compassionate and want to help but they need to know about the needs and be made aware of the issues.

Pediatric cancer has residual effects. Because of my treatment I was unable to experience many of the staples of childhood that others tell me about. I could never ride a bike or play sports. It was difficult to see the other kids doing the things that I so longed to do and the experience of watching was truly a hardship in my life. Although, at the time I thought that this lack of experiences was nothing but a detriment to me and my life, I later found out that it was simply a factor of my life that made me who I am today. The constant watching from the sidelines as others played made me more observant and more detail oriented. The exclusion from sports and other activities made me more independent and carefree. The time spent in the hospital and at home, a period in which I spent a great deal of time with adults, made me more mature and gave me an almost inner spirit that has helped me better understand myself and balance my emotions. Most importantly, those experiences taught me that hardships are just that – hard – but that you can always overcome them and often times you are a better, more sophisticated, and prepared person. Because of my early experiences, I have spent a lot of time contemplating my future and whom I want to help. As an undergraduate, my goal is to double major in political science and international studies. I hope to finish my bachelors early in order to complete a master of public administration with a concentration in international policy. I then want to continue my education at law school. My reasons for pursuing these degrees is so that I can participate in advanced levels of research and gain the experience that, particularly in our current political climate, far too many politicians lack. Inexperience often impedes Congress’ ability to draft strong policy, reach across the aisle, and make good decisions as it relates to our country. The result is vague legislation that allows the executive and judicial branches to do the real legislative work. I hope that doing this research will give me the experience necessary to pursue a political career. Although I know that students often change their majors in college, my passion to serve other people will never change and I hope that one day I will be privileged enough to be in a position to help solve our country’s issues, especially the issue of the lack of funding for pediatric cancer research and treatment, through strong public policy

A Cancer Mom’s Strength Comes Full Circle

Sarah Fruendt Sadler has many titles.  She is a pediatric oncology nurse at Levine Children’s Hospital, a wife and just recently added the title, Mom, to her name.  You would never know that she also holds the title for two-time childhood cancer survivor.  Diagnosed with Leukemia at two years old and relapsed when she was eight, Sarah vividly remembers the pain, the treatments, and most importantly, the strength of her Mom.

This is a little different kind of Cancer Mom story… 

By Sarah Fruendt Sadler

When people learn that I am a pediatric oncology nurse, they always cringe and ask why I would choose to work in this speciality. What they don’t know is that I am a two-time childhood cancer survivor myself. When I was two years old, I was diagnosed with Leukemia and spent the next two years in and out of the hospital completing treatments. 

Then at age eight, approximately five years in remission and three years off of treatment, the unthinkable happened – after a routine check, we received the phone call from my oncologist that the cancer had returned. If you ask me what I remember about that night, I’ll tell you that I remember my parents acting very serious and my mom crying as my dad sat us all down on the couch and told us the news. I couldn’t truly comprehend what this meant as I was so young the first time and I simply told them, “Well, I beat this thing once, I will do it again.”

My mother, however, had a strong memory of the cancer life before and was devastated it was going start all over again. She kept journal entries written to us kids and from that night, the entry dated June 4th, 2001 at 2:30am she wrote: 

“Our lives will never be the same, at least not for a while after our phone call from the doctor tonight. You were so young last time, you don’t remember how chemotherapy made you feel. Oh how I wish this was happening to me or daddy, not you. You’ve gone through so much already and you were just getting used to a normal life. And now we have to go through it all again and more intensive this time. You don’t understand how your beautiful looks will change, how weak & sick you will feel, and especially how you will no longer be able to be around your friends. Goodbye normal life.” 

As a mother now, I can’t imagine having to think these thoughts about my own son, knowing the truth of the difficult days that lie ahead. Although we had a huge network of support from our friends & church, no one can take the place of a mother as she spends each day taking her child back and forth to the hospital, keeping up with all of the medications, and trying to hold on to the smallest bit of hope that normal life will return someday. Not only does she have to use her strength and energy to continuously fight for her child with cancer, but daily puts on a brave face and works tirelessly to care for her other children and family as a whole along the way. It’s a tough journey for each and every child facing a cancer diagnosis, but it is too often forgotten how much a parent must sacrifice, especially a mother, as they watch their child suffer and feel helpless to control it. 

During my treatment, there was one particular point in time that I had become very sick and the idea of a full recovery seemed very distant. It still is extremely difficult to go back and read her journal entry to me that day as it said:

“We know that if you were to ultimately die from the Leukemia, that you would go to be with the Lord in Heaven. Oh how I would miss you terribly and it would be so hard – but I know you would be in a better place, the best place, and that I would see you again in Heaven some day.”

Can you imagine thinking those thoughts for your own child, knowing there is nothing you can do to help and you are forced to accept whatever happens? I truly hope that no mother ever does. But childhood cancer surrounds each and every one of us in some way and so much support is needed to help those facing these realities. 

I am 16 years cancer free, as a normal, healthy young adult with a wonderful family and such a rewarding career because of the support of groups advocating for children with cancer like the Isabella Santos Foundation. 

Raising funds for new, upcoming cancer treatments and research for those yet to be discovered means that more success stories like my own are possible for children in the future. Despite having battled cancer twice as a child, I have been able to live my dreams to the fullest. I was given the chance at a normal life – going to school, attending college, studying nursing, marrying the best husband a woman could ever hope for, and even starting a family of my own with our beautiful son. Now I spend my time giving back in the best way I know how, caring for patients and their families at the same hospital where I experienced it all firsthand many years ago. 

Although I have been gifted this amazing opportunity of a normal life, I still rely on the love and support of my mom as it shaped me to be the person I am today.  I know it fills my mother’s heart with joy to see how I have become a mother myself and she’ll never fully know how much her strength and courage has significantly impacted my life. We must all join the fight for not only the children with cancer but the families and especially the moms. We must do what we can to give them hope that their own child will get through this and have a normal life someday – it’s all we can sincerely hope for.

Donate and help us fund upcoming cancer treatments and research so that more kids have success stories like Sarah’s… that they are able to become Mother’s themselves one day.  We are working to help them BEAT cancer, GROW hair and LIVE their dreams.  Your donation to the Isabella Santos Foundation helps fund research so desperately needed for rare pediatric cancer patients.