Once one becomes a parent, he/she immediately acquires a new greatest fear: The loss of a child.
I’m hardly exaggerating. Before my daughter was born, my scared-out-of-my-mind list was probably headed by plane crash; house fire; parents passing; losing my job. Then, just like that, everything changed. My daughter became my life, and the idea of losing her terrified me. When she was an infant, I’d tiptoe into her room at night to make sure she was breathing. Heck, I just did this about 20 minutes ago to my son—who’s 5.
Back in 1997, Liz Scott was confronted by the worst of nightmares. Her 1-year-old daughter, Alexandra, was diagnosed with neuroblastoma, a rare childhood cancer that develops in nerve cells. Through the years, there were treatment highs and treatment lows, great horrors and great triumphs. Alex, as the Scotts called her, was a loving and courageous girl. At age 4 she opened up a lemonade stand to help her doctors discover a cure for cancer. In one day, she banked $2,000.
Over the ensuing four years, Alex’s lemonade stands raised millions of dollars for pediatric cancer research and clinics across the country. Then, in 2008, 8-year-old Alex Scott lost her battle and passed on. Her life was completed.
And yet … in the most beautiful of ways, she didn’t pass on. Thanks to a young girl’s hard work, and her family’s dogged determination to bring meaning to tragedy, Alex’s Lemonade Stand Foundation for Family Cancer Research has generated more than $25 million to fight the disease. It is, without question or hesitation, my family’s favorite charity, and one we try and donate to regularly.
Here, Liz Scott, Alex’s mom and the co-executive director of Alex’s Lemonade Stand, talks loss and love and what it means to soldier on when life seems hopeless. You can visit the charity’s website here, and follow its Twitter feeds here. I assure you, it’s a blessed cause.
Liz Scott, welcome to the Quaz …
JEFF PEARLMAN: Liz, first I want to say, I’ve never been more honored to have someone do a Quaz. So thank you. I’d like to start with a basic question. Your charity, Alex’s Lemonade Stand, is committed to fighting childhood cancer. It is named after your late daughter, Alex, who died at age 8 in 2004. I want to know about Alex. Like, really, really know about Alex. Who was she? What was she like? What did she enjoy doing? Hobbies? Passions?
LIZ SCOTT: Sure—this is a wonderful question and one I am honored to be able to share. As you know, Alex was my daughter, and she was amazing. We often would say that she was wise beyond her years, as is evidenced through her knowledge that her lemonade stand would succeed. However, she was also always giving advice to her brothers and even Jay and I about things she thought we should or should not be doing. We sometimes would call her “mother” because of the protective instincts that she showed at a very young age. Other than that, the easiest way to describe her is simply that she was my daughter. She loved many of the things that young girls love, she loved going to school, she loved fashion, in fact it was a dream of hers to go to Paris one day and study fashion. She was a wonderful child, so intelligent, sweet, and happy. It would have been easy for her to feel sorry for herself, but she didn’t. She lived her life the only way she knew how and she had a wonderful spirit. I miss that about her.
J.P.: For all parents I know, there’s no greater nightmare than losing a child. And, in a sense, I could see where—to the public—that base reality can get lost in Alex’s Lemonade Stand. What I mean is, it’s incredibly wonderful and positive and amazing, and someone could easily forget that it exists because of great tragedy and heartbreak. This is blunt, but I want to ask it: What is it like losing a child? How does one cope? Move on? Move forward? Is it even possible? And are there still moments, eight years later, where you still go through disbelief?
L.S.: It’s hard to describe what losing a child is like until you have gone through it. Nothing can prepare you for it, and no one can explain how it will feel. I think in some ways it’s similar to losing anyone you are close to – you miss them terribly, you can’t believe they are gone, you still catch yourself sometimes talking about them like they are in the present or that they may walk through the door. But, I think the difference when you lose a child is the intensity of that feeling—I never understood the expression a “broken heart” before but I remember at times literally feeling so sad and scared that I thought my heart might stop, truly like it was “broken.” I also worry sometimes that I could have been a better mom to Alex—with so much to do for Alex and three other young children, I wonder if she felt how much I loved her every second she was alive.
Of course I still miss Alex, and still have some pretty intense moments of grief but I have learned that I can be happy again. One of the things Alex taught me in her life was how to be happy despite hardship—she even said once at a particularly difficult time in her life that she was happy for what she had, not unhappy for what she did not have. For me, this was one of the greatest lessons she gave me—I feel so fortunate every day to have my three healthy boys, a happy marriage, and of course her legacy lives on through this Foundation, through volunteers, and through all kids who still battle childhood cancer every day. I am truly lucky.
J.P.: How does one begin a charitable foundation? I mean, it seems like an idea thousands of people surely have, but only a sliver actually act upon. Did you envision this becoming the huge operation that it is? Did you ever envision helping this many people?
L.S.: Well, I can tell you that it wasn’t in our life plans to have a Foundation, but what Alex’s started has been catching. When Alex died, we thought the lemonade stand would just fade away, but we were surprised and honored that Alex’s supporters continued to hold lemonade stands. I would say for us, we were lucky because we had Alex as a leader and she inspired so many people that it would have been nearly impossible not to continue. Alex’s story still inspires people today and it is one that will be timeless as long as children are still battling cancer. I don’t think I ever imagined it would become and I am grateful that we are able to accomplish so much to move this cause forward.
J.P.: Along those lines, sort of, Susan G. Komen recently went through a nightmarish run, where politics and charity crisscrossed into one ugly mess from hell. I was wondering what you thought of that situation. If you felt for Komen, were repulsed by Komen, etc …
L.S.: This is a tough question to answer because we weren’t behind the scenes and perhaps don’t know exactly what happened. I think with any nonprofit, or any for profit for that matter, you will face difficult times. For our Foundation, we try to be as honest as possible, and I think that’s really all you can do—be up front with your donors and supporters and tell them what you plan to do and why. The job of a nonprofit really is to be as transparent as possible, so that is what we try to be. I think in their situation there can be arguments for both sides, and no matter what the outcome is in years to come, they have made a huge impact on the world of breast cancer, in the lives of women, and for nonprofits as a whole. Their Foundation has been a trailblazer.
J.P.: Who are you, Liz? What I mean is, I know you’re Alex’s mother, that you have a son going to Harvard and you live in Pennsylvania. But who are you? What was your life path to this point? How did you get here?
L.S.: I am a pretty typical 42-year old mom. I love being a mother and enjoy spending time with my family—we play games, talk, and just hang out. I grew up in central Connecticut in a large family with eight siblings—I loved growing up in a big family and I also think it shaped my life a lot. The feeling that there was always someone there for you—literally and figuratively, made me value being there for my kids and also helped us to feel supported when Alex was sick. My husband and I were high school sweethearts, both attended the University of Connecticut and soon after we graduated, we got married. When I was pregnant with my oldest son Patrick we opened the first “gourmet” coffee/espresso shop on the University of Connecticut campus. It was a great little business and we really enjoyed running it for about three years—we ended up selling it after Alex was diagnosed because of the demands and stress of it all. Jay took a job and I stayed home with the kids, although I waitressed for a few years in the evenings for extra income. We were happy living in Connecticut, and if it weren’t for Alex’s battle with cancer, it is very possible that Jay and I would have lived our entire lives in that state. When Alex was going through her treatments we made a decision to move to the Philadelphia area to be closer to The Children’s Hospital of Philadelphia and fell in love with this area. Although we miss being closer to family, we have so many good friends here and the community was so good to Alex and her stand that I feel we belong here. I know my kids consider it home and enjoy their friends and schools here!
After Alex died, and we started the foundation, I decided that I would leave my favorite job in the world (staying home with my kids), and start working to help grow the foundation. Today, a lot of my life revolves around the Foundation but like any parent, I try to balance my time and effort between work and home—I think my kids know how important they are to me because I really do my best to make sure they feel like I am here for them. I like to go to their sporting events, their school events, be there when they get home from school and want to talk, or sometimes we just watch our favorite shows together.
J.P.: The phrase “fighting cancer” is used quite often—by you guys, by others. But is there really such a thing? And do you, in your heart, believe we’re close to curing cancer? Or is the best we can hope for improved medicine and diagnoses?
L.S.: I think fighting cancer is an accurate term for sure. Cancer is an invader in your body, and something that your body will certainly need to fight to get rid of. It’s a battle in many facets, not only physically, but mentally as well, and it’s a battle for families to get through, like any war at the end you know more about yourself, more about those who you love, and those who truly love you. In my heart, and in my mind, I’d like to think that we are on the right track to curing cancer, but the term cancer is very expansive. For instance in childhood cancer there are certainly types that are highly curable, but there are others like Diffuse Intrinsic Pontine Glioma (DIPG) that will almost certainly lead to death in children. I think research is so important and it needs to continue for any progress to be made. There is also a great need for less toxic and damaging treatments—that is another area where we will see progress being made soon through targeted therapies and more personal medicine. We’re on the right track, but with anything, it takes time and resources and without the funds we won’t move as quickly as we’d like.
J.P.: Alex would be 16 now, which—I’m guessing—sorta blows you away and, at times, must be quite heartbreaking. I’m wondering what you think she’d be doing. Can you imagine her in a certain career down the line? And how do you think she would feel about Alex’s Lemonade Stand?
L.S.: This is a tough question—as you know, Alex was only 8 when she passed away. As the years pass we are very close to Alex being gone longer than she was on this earth and that is something that is pretty hard to grasp. I do often think about what she would be like if she were still here; if she would be begging to get her driver’s license or if that would be of no concern to her. I wonder if she would be very girly or if she would be more of a tomboy growing up with three brothers. Alex was very much her own person and I know she would have grown up into her own person; it’s hard to imagine who that person would have been. I do know that she would certainly be very intelligent and probably a handful to parent, and that she would be very involved in school, clubs and more. Alex could be shy, but once you got her talking, it could be hard to stop. I wish I could tell you more about how I would envision her, but when I think about her in my mind, really the only thing that I see is her as a happy teenager.
J.P.: People often talk about the courage children show when facing diseases, and Alex was no different. I was wondering—how much of it, do you believe, is instinctive, vs. contemplative? What I mean is, do children have a coping mechanism adults might lack? And how would you explain Alex’s strength?
L.S.: You know, I do think it’s instinctive. I don’t know if children have a full sense of their own mortality, but I actually think that’s a good thing. Children seem to have an amazing spirit and one that we should all strive to capture—they live in the moment. If you have ever visited the oncology floor of a children’s hospital, sure you will see many children who are sick or in bed, but you will also see children riding their bikes through the hallways, or playing in their rooms with nurses and smiling. Children have this amazing ability to focus on how they feel right at that moment, so if they feel good, they want to ride around the hallways or play.
J.P.: What has been your greatest moment with Alex’s Lemonade Stand?
L.S.: I’m not sure I could pinpoint a greatest moment, there are so many to choose from. Whether it was seeing the support that Alex received at her very first lemonade stand, or reaching her million dollars, I couldn’t choose. The amazing part about my job is that we have great moments every day—we hear the stories of amazing children (our heroes!) who are battling cancer, or volunteers who are supporting the cause. We have the opportunity to work with researchers who really are moving us close to cures, and that is an honor. I know this is something we have said before, but I think the greatest moment will be when we can put Alex’s Lemonade out of business because we found those cures we are so desperately seeking.
J.P.: Some would look at all the amazing work you’ve done and say, “God works in mysterious ways.” Others would look at a family losing a child and say, “There is no God.” What do you say?
L.S.: I say “Who knows?” We all have our own views and our own beliefs and that’s OK. I think we have had some really amazing things happen to us through Alex’s Lemonade Stand, and of course some really large tragedies as well. Maybe it’s a balance, maybe it’s luck, or some higher power, or possibly a combination of all of these things, and of course hard work thrown in there too. I don’t know why things are the way they are, but what I do know is that life is difficult and unfair at times but also pretty special and amazing.
QUAZ EXPRESS WITH LIZ SCOTT
• How do you like your lemonade? And do you have a great lemonade recipe?: I would have to follow Alex’s lead on this and say that Country Time is the best lemonade. It’s no big secret, that’s what she used at her stands.
• Rank in order (favorite to least): Celine Dion, Ray Charles, bananas, Mookie Wilson, E.T., Alf, long walks on the beach, the smell of coconut extract, Fantasy Island, Randall Cunningham: Wow, I’ll keep the order you put them in … seems random enough.
• Hall or Oates? Why?: Hall. His name is first in the group’s name.
• Are people ultimately good, bad or somewhere in the middle?: Definitely good.
• Why didn’t the Limp Bizkit comeback tour catch on?: I have no idea; I don’t think I could even name one of their songs.
• Five best movies you’ve ever seen?: Hm, that would take me too long to think of. I don’t watch many movies.
• Would you rather attend 500-straight days of Mandy Moore concerts, or chop off an ear?: Mandy Moore. I like live music and I value my ears.
• Your son is going to Harvard. Does that mean he’s smarter than me?: I don’t know about you, but he’s smarter than me for sure.
• My daughter will be hosting an Alex’s Lemonade Stand in the coming weeks. Best advice for her?: Have fun and know that you are changing the lives of kids with cancer and smile at everyone! Also, remember the old adage—the number one reason people give to charity is because they are asked!