Alex’s Lemonade Stand Foundation – Childhood Cancer Research and Success Stories [transcript] [audio]

Guest: Jay Scott

Presenter: Neal Howard

Guest Bio: Jay Scott is Alex’s dad, Co-Executive Director of Alex’s Lemonade Stand Foundation and also a proud father to three sons, Patrick, Eddie and Joey. Alex was diagnosed with neuroblastoma, a childhood cancer, when she was just a year old. In 2000, at 4-years-old, Alex announced she wanted to hold a lemonade stand to raise money to help find a cure for other children with cancer. In her lifetime, Alex would go on to raise over $1 million before she passed away in 2004 at the age of 8. Jay works alongside his wife Liz and the amazing ALSF staff, board of directors, sponsors and supporters to continue the fight against childhood cancer, one cup at a time. Jay loves basketball, distance running, dogs, making wooden bowls and hanging out with his family.  

Segment Overview: Jay Scott, leader of Alex’s Lemonade Stand Foundation (ALSF) Childhood Cancer Nonprofit discusses the story of Alex and the Foundation, the impact of childhood cancer research, and some of the ALSF success stories.  

Neal Howard: Welcome to the program. I’m your host Neal Howard here on Health Professional Radio. Thank you so much for joining us here today. We’re going to have a conversation with Jay Scott. He’s Co-Executive Director of Alex’s Lemonade Stand Foundation. He’s also the proud father of three sons, Patrick, Eddie and Joey. He’s joining us on the program today to talk about Alex’s Lemonade Stand. It’s a not-for-profit foundation for childhood cancer. I’ll let Mr. Jay Scott tell us all about it. Welcome to the program Jay. How are you?

Jay Scott: I’m great. Thanks for having me on.

N: Alex’s Lemonade Stand, let’s jump right into that after you give us just a little bit a family history.

J: I am lucky to be the father of 4 kids, 3 boys and a girl, like you said. Alex was our only daughter and she was diagnosed with cancer when she was one. It was a very difficult time for us but if your goal in life is to make an impact, you’ll certainly pack a lot of living and a lot of impact in two and a half years.

N: We’re talking childhood cancer. What exactly was it that Alex was diagnosed with?

J: She was diagnosed with the cancer called neuroblastoma. It started on her adrenal gland and spread from there.

N: Is this a rare type of childhood cancer?

J: Childhood cancer is luckily rare. Although they take the lives of more kids in the US than any other disease. They still are rare. Neuroblastoma is rare as a rare but aggressive type of childhood cancer. That’s probably around somewhere between 6 in 700 kids in the United States every year. She was one of the unlucky ones.

N: Being so young, keeping such a close eye on your baby, what was some of the symptoms that raised some of the biggest flag for you and your wife?

J: Around nine months, she started being a really unhappy kid. She just wanted to be held all the time. She was eating a lot. She started losing weight. She loved to eat meat. It was really unusual as a nine month old. She was just craving meat and nam but she was losing weight. Then she started sweating a lot, and just wanted to be held even when she was sleeping. My wife, we kept bringing her back to the doctor. The doctor was telling us that she was okay. My wife had this mother’s intuition that something was wrong and going on in her belly. After a lot of doctor visits, we eventually brought her to the emergency room. And if it shows as awful, so we don’t want to leave until we can figure out what’s wrong with her. We thought she had like a stomach ailment or something. Once you saw a neurologist, the neurologist said, “I think she has a tumor on her spine or in her brain.”. She was right, because by that time the tumor had wrapped around her spine and she didn’t have great reflex within her knees.

N: This had been going on with misdiagnosed as being a major culprit. Once things were pinpointed, what was the course of action?

J: She went into surgery almost immediately, within a day. She went to surgery the day before her first birthday. When she came out of the first surgery, it lasted a long time. It lasted like I think around 14 hours when she came out. She was in critical care unit. They realized that she had actually been paralyzed during the first surgery and they rushed her back in for a second surgery to try to figure out what was going on. When she came out at second surgery, they told us that she was paralyzed from the chest down because the blood supply to her spine got compromised during the surgery and she would never be able to walk or anything.

N: In spite of all of that dire news, a lot of good came out of Alex’s situation. In the form of Alex’s Lemonade Stand, she didn’t passed away until she was like 8 years old. Is that correct?

J: Yes, that’s correct. She fought her cancer for seven and a half years. Miraculously, she regained movement in her legs. She never regained sensation. So she would never able to feel her legs, but she regained movement and she learned how to walk without feeling her legs.

N: Wow.

J: She didn’t walk like a normal kid walking, or she has the walker, would hold onto tables and walls to get around because sometimes she would lose her balance. But, the huge difference from that, from being paralyzed to that, her cancer kept coming back, again and again. Finally, we had gotten three opinions and all three opinions differed on how we should treat her. Eventually, when she was almost four, all three hospitals in big cities on the East Coast agreed on what we should treat her and that was to stop treating her, take her home, let her spend her remaining days out of the hospital, because she was going to die. One doctor, told us that we should go to a four city and that was in Philadelphia and they might have the treatment that can help her, because in child, the cancer, you don’t get the same treatment. It depends where you’re at. We went down to Philadelphia and they had this experiment of treatment. It was the first time she got an experimental treatment and it changed her life.

N: Wow.

J: She went in for this treatment. She was on morphin 24 hours a day. The cancer was as high as her neck and as low as the bones in her left foot. The treatment was scary. She was almost four. She had to be in isolation, in a LED room, sort of walls and the ceilings and floor were all made of LED. She had to stay in bed and be behind the LED shield. One person was allowed to be in with her at a time, so one parent. The parent had to wear a radiation meter and they injected her with this radiation that went through her bloodstream and attacked her neuroblast almost from the inside-out rather than radiate them from the outside. She had to stay in that room until she was no longer radioactive. She got out in about three days and when she got out, she said two things. She said that treatment worked and my wife said, “What do you mean the treatment worked?”. She said, “You can tell by the way I feel.”. And it was right after thanksgiving and then she said she wanted to go shopping for Christmas dress. We were taking home a kid completely different than the one we brought in, because she was completely off pain medicine. She was completely off the pain medicine. She was happy and she had life in her again.

N: That happiness, Alex’s Lemonade Stand has helped so many kids, so many people, able to raise over a million dollars through Alex’s Lemonade Stand?

J: She raised over a million while she was alive. If you fast forward today, we are approaching 200 million. But when we went back to home in Connecticut, she went to the hospital. They did a scan. They called us up and they said, “The treatment worked.”, and we said, “What do you mean?”. They said, “All the cancer has gone except for one small spot on her spine. It’s gone on her neck. It’s gone on her foot.”. The big bulky tumor is gone in her abdomen but there’s one spot left on her spine. So, they said, “Listen, we’re going to reschedule her transplant.”. She had been scheduled for a transplant. They called it off because she was too sick. They said, “We want to reschedule it.”. The day after her fourth birthday, she went in for a stem cell transplant. It’s more to a bone marrow transplant. And it was last, she was in the hospital for that month that she just said to us one day, “Hey when I get out of here I want to set up a lemonade stand.”. That was January. We told her, “Listen, it’s January. Nobody wants to buy lemonade in January. We live in Connecticut.”. She kept asking when she got out of the hospital, “I want to set-up a lemonade stand.”. We said, “What toy do you want to get? Because we’ll just buy it for you.”. She said, “No, I don’t want to keep the money. I want to give it to the doctors, so they’ll come up with treatments like the one I got in Philadelphia.”. It had such an impact on her that she thought she could make a difference as a four year old setting up a lemonade then.

N: Through Alex’s Lemonade Stand, there are other programs, some programs that have sprung forth travel care, Travel for Care Program, Super Sibs, and Childhood Cancer Treatment Journal as well.

J: Yes. The travel for carers probably, our largest non-research program, so most of the money we raised, we fund, research of the new treatment. What we realized when Alex was in treatment, was it sometimes you have to travel for care. Living in the Northeast and having a good job, it wasn’t an issue for us to travel up to 200 miles. But for some people, it’s a real issue if you to travel to get your kid the treatment they need. We don’t want people to have to decide, “Are they going to pay the rent? Are there enough food on the table or they’re going to get the kid the treatment they need? So, we’ll pay for the families that need to travel, they get to the hospital where they have the treatment.

N: Talk about the one cup at a time philosophy that basically underlies Alex’s Lemonade Stand.

J: We believed every donation is important. A lot of our money is raised from Lemonade Stand, still millions of dollars a year. We raised 25 million this year, still 3 or 4 million will come in from Lemonade Stand. So we believe every cup of lemonade that is sold is important because you don’t know which dollar is going to lead to that care because every dollar is important. Every dollar is doing something and finding a data point. We just want everyone to be able to be part of finding cares for kids with cancer.

N: Where can our listeners go online and learn some more about Alex’s Lemonade Stand and become involved?

J: If you go to alexslemonade.org or you just Google Alex’s Lemonade, you will get to our website. We have so many ways for people to get involved, small ways, big ways, and everything in between.

N: Well, I’m hoping that you get much more support and get the word out more in getting more of funding for extensive and extended research. It’s been a pleasure. Thank you so much for talking with us today.

J: Thanks for having me on. Appreciate it.

N: You’ve been listening to Health Professional Radio with your host Neal Howard. Thank you for joining us today in studio, with Jay Scott, Co-Executive Director of Alex’s Lemonade Stand. Transcripts and audio of the program are available at healthprofessionalradio.com.au and also at hpr.fm. You can subscribe to this podcast on iTunes, listen in and download at SoundCloud and visit our affiliates page at healthprofessionalradio.com.au.

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