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Alex's Lemonade Stand Foundation Blog

Today, January 18, 2018, would have been my daughter Alex’s 22nd birthday; most of you know her as the founder of Alex’s Lemonade Stand Foundation.  Every year as Alex’s birthday rolls around, I wonder what is left to say about Alex. I have shared so much about her amazing life, her heartbreaking struggles and her extraordinary ability to persist.  She was a special girl that is certain. I am proud to be her mom.

by Liz Scott, Alex’s Mom

Today, January 18, 2018, would have been my daughter Alex’s 22nd birthday; most of you know her as the founder of Alex’s Lemonade Stand Foundation. Every year as Alex’s birthday rolls around, I wonder what is left to say about Alex. I have shared so much about her amazing life, her heartbreaking struggles and her extraordinary ability to persist. She was a special girl that is certain. I am proud to be her mom.

As I think of a new story to share about her life, I can’t help but think of another little girl named Greta whose story was similar to Alex’s in many ways.

Like Alex, Greta was diagnosed with cancer when she was just an infant. Alex had neuroblastoma and Greta had leukemia but both faced many months of aggressive treatment before they could even take their first steps.  

Also like Alex, treatments failed Greta. When her cancer returned just months after her treatment, Greta was facing dismal odds. I know too well the fear that must have been in her parents’ hearts as they faced the reality of her prognosis.  

Miraculously, they learned that Greta qualified for a new immunotherapy trial funded by Alex’s Lemonade Stand Foundation. The trial had just opened, but it was far from Greta's home in another state, presenting another barrier to treatment. Luckily the Foundation’s Travel For Care Program was available to help this family with lodging while Greta received the immunotherapy treatment. Within two weeks, Greta was in remission and has remained there for over three years!    

I share this today, on Alex’s birthday, because I think Greta’s story is a story that Alex would be most proud of – the story of a little girl who gets to grow up and live her dreams.  

Alex wanted to grow up too; she had a lot of dreams for herself. She also had hopes and dreams for other kids – and I think she saw her lemonade stand as a way to help other kids live their dreams. When she first started her stand, I thought she would raise 5 or 10 dollars and I told her so. But thankfully, she was not deterred by my doubts. Alex set out, with the help of her older brother Patrick, and of course little Eddie, in our front yard with her pitcher of lemonade and a sign that said she was donating the money to her hospital. That day was incredible, people came to show their support, some with smiles, some with tears, but all with the idea that they could do something to help. At the end of the day, she had raised more than $2,000. When I asked her what she thought about that day, she said: “It was the best thing that ever happened to me.”

I knew then that this meant something to her, it was not cute or small, but something she took to heart. Perhaps that day her vision started to develop, a vision of what could be done if she continued to sell lemonade and inspired people to give and to work together to help other kids. 

One little girl, my little girl, started a movement that would give other little girls (and boys) cures. Alex gave other families more stories to tell—stories of more birthdays and school days and graduations and weddings. 

Greta’s mom says it best: “We find ourselves thankful literally every day for the hopes and dreams we are seeing Greta realize!”  

(And Greta’s story is just one; you can read about Edie and Zach and Taylor and so many more stories of how your donations are saving lives.) 

So, as I reflect on another birthday for Alex, I am sad, of course, for all she missed, but full of joy for all she made possible. Her story continues every day through her legacy of lemonade stands and working together to bring us closer to the conclusion that Alex wanted: a cure for childhood cancer.

It is an honor to help continue to write the story she started. And it is an honor to do so alongside so many other Hero families, generous supporters, volunteers, researchers and everyone who continues to believe that if we all work together, anything is possible, even cures for childhood cancer. 

Happy Birthday, Alex. 

Categories: 
Alex Scott
Alex’s Lemonade Stand Foundation started because Alex believed so strongly in the power of kids helping kids. Whether it’s hitting a hole-in-one, challenging classes to a change war or cheering up SuperSibs, kids are thinking of creative ways to help the fight against childhood cancer. Here are five ways children across the country are making a difference:

by Adam Paris, ALSF

Alex’s Lemonade Stand Foundation started because Alex believed so strongly in the power of kids helping kids. Whether it’s hitting a hole-in-one, challenging classes to a change war or cheering up SuperSibs, kids are thinking of creative ways to help the fight against childhood cancer. Here are five ways children across the country are making a difference:

1. Turning Sports Stats Into Research Dollars

Bella, an 8-year-old golfer in Illinois, is as driven to fight childhood cancer as she is to get pars on the golf course. After asking her parents about trying to help sick kids, they discovered the Champion for Kids with Cancer program, where any athlete can turn their sports accomplishments into research dollars. Now, Bella is using her budding golf career to support ALSF by accepting donations and pledges for every birdie and par she makes at tournaments. She even made custom ball markers to help raise awareness. Sign up to become a Champion for Kids with Cancer here.

2. Teach Kids About Kindness

Kids at Brook Park Early Learning Center in Lawrence, Indiana spent the school year learning all about the importance of kindness. Their teacher wanted to bring the lessons into reality, so they raised money for Alex’s Lemonade Stand Foundation. They exceeded their lofty goal of $300 by raising $340 and hosting a Kindness Ball to celebrate their accomplishment. To top it off, a local police sergeant brought in $350 to add to their total and demonstrate how kindness can be repaid by others.

3. Start a Change War at School

Three elementary schools in New Jersey are reading The Lemonade War to build a community of young, enthusiastic readers. Meanwhile, everyone will be competing in a spare change war to support Alex’s Lemonade Stand Foundation while reading the inspirational book, Alex and the Amazing Lemonade Stand. Both books are ideal ways to integrate kids helping kids into the classroom and make a real impact for children fighting cancer. Here are several more ways to integrate ALSF into the classroom.

“Our 'One School One Book' initiative, here in Haddonfield, is all about building relationships within a community of readers. When we thought about ways we could build outside relationships that would coordinate with our book, The Lemonade War (a book about sibling relationships), we wanted to find an organization that would help our students to see how their actions could make a difference in the lives of others. Alex’s Lemonade Stand Foundation was the perfect relationship for us, connecting both with the subject of our book choice and our goals for students,”  Katy Roussous, Language Arts Specialist at Elizabeth Haddon School.

4. Honor Alex Scott’s Memory

Madalynn, who lost her mom to cancer, wanted to teach other kids about how they can make a difference. Every year, her school puts on a wax museum of legendary leaders with reports, posters and even students dressing up as their subjects. When Madalynn learned about Alex Scott’s story, she decided to focus on ALSF’s founder for her project. She told the whole class about Alex’s vision for a world without childhood cancer and inspired her friends to sell lemonade and raise over $1,000 to continue Alex’s legacy of leadership! Read more about Alex’s story.

5. Cheer Up Amazing SuperSibs

When a child is diagnosed with cancer, it can be a difficult time for the whole family, especially siblings. Making sure they feel cared for is important and a Girl Scout troop from Exton, PA recently did just that. They created beautiful cards with animals drawings and quotes to inspire SuperSibs and remind them how loved they are! One card can go a long way towards making a sibling feel extra special! Find out how kids can sign up to become SuperSibs.

 

Categories: 
Schools
Sophia

When Sophia (above) was just 4 years old, she had to have an 8-hour surgery to remove a tumor on her kidney, followed by 18 months of chemotherapy and radiation. Sophia had Wilms’ tumor, the most common kidney cancer in children.

The first signs of Wilms’ tumor—a painless swelling in the abdomen, blood in the urine, belly pain, high blood pressure or fevers—often seem to be symptoms of something much less scary. A pediatrician will recommend an abdominal ultrasound and then a diagnosis will be made. Treatment, which typically includes surgery, radiation and chemotherapy, begins. Most children, even those with higher stages of the disease can finish treatment knowing that they will most likely never battle Wilms’ tumor again.

However, being cured of Wilms’ tumor can come with a bevy of long-term side effects—loss of kidney function, bone and skeletal deformities, lung issues and more cancer.

With each year of remission, the risk of a secondary cancer increase, particularly for those who require radiation.

Dr. Julie Glade-Bender

Dr. Julie Glade-Bender

“No matter what you do, you are exposing a fair amount of a child’s body to radiation and every little bit of radiation counts, particularly in children who have already declared themselves as a ‘tumor-former’,” said Dr. Julia Glade-Bender, a member of the ALSF Scientific Advisory Board and an oncologist at New York-Presbyterian Hospital/Morgan Stanley Children’s Hospital.

Now, oncologists are studying the biological drivers of Wilms’ tumor to understand how to reach a 100% cure rate, while minimizing long-term side effects.

The cures and the side effects. 
For years, the mainstay of treatment was surgery, chemotherapy and aggressive radiation. Clinical trials have shown that chemotherapy can be shortened and radiation can be eliminated for many children with Wilms’ tumor. For those who still require it, doses of radiation have been reduced, but not enough to completely avoid potential significant long-term health risks.

Radiation can leave a child susceptible to skeletal deformities—the radiated side of the spine can grow slower than the non-radiated side. Radiation can also cause restrictive lung disease later in life and hamper an individual’s ability to breathe. It also exposes a child to the risk of more cancer.

Every cancer is different.
Under the microscope, Wilms’ tumor cells look similar to other childhood cancer cells—round blue embryonic cells.

However, the microscope does not tell the whole story.

“Every cancer is different, because every child is different,” said Dr. Glade-Bender. “The critical question is: which cure goes with which patient?”

The biology of Wilms’ tumor coupled with the biology of individual patients affected by disease are two areas of specific interest to researchers. They are working to understand the origins of the disease and also to understand why some cases of Wilms’ tumor are treatment resistant.

Researchers are performing retrospective studies and reviewing past cases of children who relapsed following frontline treatment. They are also working to study patterns of chromosomal changes that happen in children diagnosed with Wilms’ tumor.

Dr. Glade-Bender and other ALSF-funded researchers see promise in the study of developmental therapeutics, which tests and examines new treatment agents in children after standard therapy has failed. These studies have the potential to identify new drugs that can help children who relapse and provide meaningful insights into offering safer treatments from the very beginning to future children affected by cancer.

“We won’t stop searching for cures, until we are at 100%,” said Dr. Glade-Bender.

Learn more about Wilms’ tumor research and ALSF-funded projects, here.

Categories: 
Research

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