Alex's Lemonade Stand Foundation Blog

This is Sullivan. 

by Jen Butler, Hero Mom 

My son Sullivan is a smart, kind, and strong 5th grader. 

Until November 2016, Sullivan's health was fine. Then, he was diagnosed with brain and spine cancer. As a parent, it was one of my biggest fears come true.

Sullivan bravely underwent multiple surgeries to partially remove the main tumor and release the pressure on his brain. Sullivan's tumor removal surgery resulted in Posterior Fossa Syndrome which affected his vision, speech and ability to walk. After months of excruciating radiation and high dose chemotherapy treatments, Sullivan's doctors could see no evidence of disease (NED). At the end of each phase of treatment, my husband Dan and I just hoped and prayed it worked. I remember the very odd feeling of relief that it was over, but at the same time, the anguish over wondering was it enough?

Today, Sullivan continues the long process of rehabilitation and adaptation to his new life as a cancer survivor. He has physical therapy three times per week to help regain his strength and balance. He has made miraculous strides in physical therapy, but the effects of the treatments are extremely damaging.

Sullivan has worked back up to being in school full time and has caught up, but due to the devastating effects of radiation and chemo, some accommodations have to be made to help him deal with challenges that he never struggled with before. Sullivan's short-term memory and mental focus are not what they were before cancer, but we had no choice, to save Sullivan’s life those treatments with all those side effects were necessary.

Sullivan is our son. We will always fight for his life.

In March, our family is joining ALSF for the inaugural Lemon Climb Houston and climbing the stairs to the top of Chase Tower, the tallest building in Texas. We will climb and we will fight so that our son and children just like him get the cures they need to survive and thrive.

There is no history of childhood cancer in our family. The causes for most pediatric cancers are not understood. It happened to Sullivan. It can happen to anyone.

Kids' cancers are different from adult cancers and childhood cancer research is extremely underfunded. Over 90% of pediatric cancer survivors live with lifelong health effects caused by treatments. Together, we can do something about it by raising money for cures that are more effective and less harmful.

Will you make a donation? Every dollar makes a difference for the thousands of infants, children, teens and young adults fighting childhood cancers.

When asked why pediatric cancer research is important, Sullivan said, “Cancer can take lives and can be very harmful to people. Research can find better cures for cancer that don’t involve so many meds that make you feel bad.”

Jen and Dan Butler are the parents to Sullivan, Cashel and Finn. The Butlers first discovered ALSF through resources given to them by Texas Children’s Hospital.  The Butlers benefited from support provided by the ALSF Travel for Care program and are excited to help more families going through similar experiences.  They will join family and friends for the inaugural ALSF Lemon Climb on March 24. You can join them, too! Registration and climb details are here.

Childhood cancer survivors like Tony, pictured above, have to be monitored for possible cardiac health side effects due to treatment.

Childhood cancer survivors are 7 times more likely to experience cardiac dysfunction at some point in their lives than other children. Harsh treatments from some types of high-dose chemotherapy and radiation therapy increase their risk of having an irregular heartbeat, weakening the heart muscle and even hardening of the arteries. 

This is one of the many reasons why childhood cancer research is so important—cures should not come at the cost of heart health. 

The good news: researchers are working every day to finder safer treatments that not only cure cancer but also leave children without devastating side effects. As science works towards this goal, here are 10 things you need to know about heart health and childhood cancer:

  1. Several types of treatment can put survivors at risk for cardiac dysfunction including a type of chemotherapy called anthracycline, radiation to the spine, torso or chest and high doses of a drug given in preparation for stem cell transplants. These therapies are used to treat a variety of cancers including leukemia, lymphoma, sarcomas, solid cell tumors and brain tumors. 
  2. Since the danger of long-term side effects increases with every dose and each treatment—oncologists will sometimes use another drug in conjunction with chemotherapy and radiation to protect the heart. 
  3. The younger the child is when treated, the more at risk for cardiac side effects. Children younger than 2 years old are at the highest risk.
  4. The damage caused by treatment can directly affect the heart muscle, leading to a condition called cardiomyopathy. Cardiomyopathy means the heart muscles cannot pump as well and if left untreated could lead to heart failure. 
  5. Radiation can cause a specific type of cardiomyopathy called restrictive cardiomyopathy—which means the heart muscle is not just weak, it is stiff and cannot adequately fill with blood. Radiation can also cause similar problems with the heart valves.
  6. Treatment for childhood cancer can put children at a higher risk of developing coronary artery disease, which leads to the hardening of the arteries that supply the heart.
  7. Children with cancer could be at risk of developing irregular heartbeats, called arrhythmia. 
  8. While the long-term cardiac side effects of some cancer therapies are well understood, the short-term side effects are not. Short-term side effects can affect children during treatment—causing delays and jeopardizing the effectiveness of therapy. 
  9. Even if childhood cancer survivors have no symptoms of cardiac damage, they need to be monitored annually to identify any potential changes that might indicate the onset of heart issues and affect normal life activities. 
  10. As more children are cured of cancer, researchers are continuing to study ways to give the right dose of therapies—enough to be effective at killing cancer; but not so much to cause short and long-term side effects.

Want to learn more about heart health and childhood cancer? Read our interview with Dr. Richard Alpenc, ALSF grantee and a member of our Scientific Advisory Board. Dr. Alpenc is studying the short-term side effects of cardiac dysfunction to understand what factors increase risks for children battling AML. Learn more here.

by Trish Adkins, ALSF

In Minnesota, there is a Vikings fan who really loves his team. A week before the division championship game, he won two Super Bowl tickets in a charity raffle, sponsored by Spare Key, a St. Paul, Minnesota charity that provides assistance to families with critically ill children.  He was sure his team would make it to the Super Bowl. If they did not, well, he’d give away his Super Bowl tickets to a fan who would love to see their team play. 

As everyone knows by now, the Vikings did not make it to the Super Bowl. 

Meanwhile, in New Jersey, childhood cancer hero Cole Fitzgerald has had the same wish every year for as long as anyone can remember: for the Eagles to win the Super Bowl.

He shares this wish every year at the ALSF Lemon Ball. Here it is nestled among other Hero and SuperSibs wishes around the Fountain of Wishes. 

This year Cole got his wish when the Eagles won the Super Bowl. What is amazing is how Cole got to see his wish come true. 

That fan in Minnesota stopped watching the NFC division championship game after the first half, unable to watch the carnage and feeling resigned to a certain loss. He began searching online for an Eagles fan who might appreciate the Super Bowl ticket. Somehow, he landed on and found Cole—this kid—who 11 years ago fought high-risk neuroblastoma and survived. Cole survived with football dreams—not just for his beloved team to win the big game--but for someday to be a part of professional football. Childhood cancer treatment and other health issues made it impossible for Cole to be a football player. So, Cole was already pursuing his dream to be part of the staff that makes football happen. The Eagles invited Cole to work with the support staff during one regular season game—it was that accomplishment that made the Minnesota fan’s choice easy. 

That fan in Minnesota, who so loved his team and had his own Super Bowl dreams, passed the dream on to Cole. And Cole took his father, Bill, along for the ride. 

And well, the rest is history. Cole not only got his wish; but he got to see it happen, all thanks to the random act of kindness by a man he never met. 

Unfortunately, his sisters, Maggie and Maeve, did not get their wish. 

It doesn't seem like Cole will stop talking about the Eagles' win anytime soon. 

Cole and his family are no strangers to random acts of kindness, but he is usually on the giving side. The Fitzgerald family is constantly bestowing their random acts of kindness upon ALSF—from fundraising and hosting lemonade stands to securing donations for our annual Hero Holiday party—this fabulous family of five some knows how to pay it forward.

February 17 is Random Acts of Kindness Day. Looking for some ways to celebrate with your family? Check out our ideas, inspired by all the RAKs we’ve seen and by our founder Alex Scott.