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six lessons in fatherhood from a journey with childhood cancer.

by Larry Vincent

When I was a very young man, I made up my mind never to have children. I didn’t think I would be a very good father and my own father was absent for most of my life, so the notion of being a dad was informed by angst and ignorance.

Cut to me at age 27, gleefully welcoming my first child Lucas into the world. Two years later, my daughter Jordan joined us. Today, I am grateful for the blessing of my children. They are both young adults now, and I couldn’t be more proud of them, especially given my daughter’s long journey with brain cancer. Jordan has been fighting for more than 13 years. That forged an uncertain childhood for both my kids and for my family. In retrospect, I learned a lot about being a dad through the unique lens of our experience. The following are some of the lessons I value the most.

1. Laugh
As odd as it may sound, I believe laughter kept our family strong. It’s very hard to find humor when your child is sick, but the axiom of laughter being the best medicine is very true. 

While I was thinking about this article, I went back and looked through the 13 years of entries I have written on our blog, many of them relay moments in time that were truly funny. I was smiling re-reading them.

While I can’t say that my dad was my role model, there were others dads I admired growing up. The ones that shaped my perception on how to behave were the ones who didn’t take life too seriously—the ones who liked a good prank and knew how to have fun in ample proportion to their need to exact discipline. I think many parents who share this philosophy lose sight of it when their child gets sick.

2. Advocate
I suspect this is less about being a dad, and more about being the parent of a child fighting cancer. You have to be your child’s advocate. It’s rough because that sometimes means asking tough questions of doctors and nurses in an overworked healthcare system. This is a job that is often shared between parents. And there are plenty of moms out there who take on this role alone. 

I’m from the midwest, so it’s in my blood to be nice. But there were times when being a dad to a child with cancer meant being a pest and sometimes being demanding. I had to make decisions I wish I never had to make, but it was my job because it was best for my daughter. Fortunately, we were blessed with wonderful healthcare partners who encouraged me to keep on advocating.

3. Find an Outlet
You can’t do it alone, and you can’t do it constantly. What is “it?” It is being in the battle for your child’s life and journey to wellness. Sadly, most of us share a perception that dads have to be strong and stoic and tireless. The truth is that this journey will make you feel weak and emotional and exhausted. You have to hit pause now and then. You must find a channel to release all the anger and anxiety and fear. For me, it was writing. For others, it is exercise, video games, time with friends, travel, etc. To be the best dad to your child on this journey, you have to discover your own outlet.

4. Coach
Sometimes, I think I have served my family best by being the family coach. That means being a cheerleader when the rest of the gang is feeling down. It means reminding your cancer fighter of their strengths and accomplishments so that they stay in the game with all the energy they can muster. Sometimes, it’s getting people prepared for a tough road ahead. And sometimes, it means focusing on a family member who is not the one fighting cancer fighter.

My wife missed her calling. She should have been a doctor or a nurse. She has an amazing bedside manner and Wonder Woman strength. As dad-coach, my job is often to celebrate everything she does. To use a baseball analogy, if Jordan is our star slugger, then my wife, Jeanette, is certainly our pitching ace. She can go for innings and innings, but she often needs a coach who can visit the mound and help her shake off a jam. 

5. Grieve
Your child has lost their health, at least for now. That’s a terrible, awful feeling. We dads handle it in different ways, but too often we suppress that overwhelming feeling of loss. You have to grieve.

Shortly after Jordan was diagnosed, I started writing our blog. It was originally intended to keep family updated on her progress because it was too much to call and email everyone with updates. After a while, the blog became my place to grieve. I let the dark feelings pour out and then published them to whoever wanted to read. And people did start reading. People I’d never met. I will never forget a comment that was sent to me privately after one particularly sad post. It was a comment from another cancer-fighting dad. He advised me to cry. His follow-up comment was haunting and insightful. “That’s what showers were made for.” Whether you cry in the shower or sob in your living room, don’t be afraid to deal with your grief. There’s no shame in it.

6. Let Go
Finally, as the dad of a cancer fighter, you need to learn how to let go. As fathers, we often want to have a plan. We’re Clark W. Griswold with a master strategy for getting the family to Wally World. But cancer is not so easily navigated and things will happen you can never predict. Your mind wants to skip ahead to risks and probabilities, but they are not what your family needs. Your family needs you now, in the present, making the most of this very day because the days ahead are not promised.

As a writer and a business strategist, this lesson was hard for me to learn. I wanted to control so much. That, I thought, was what it meant to be a dad—to lead the family through command and control. Boy, was I wrong. I hope I have been a good father to my children and a good partner for my wife. If I have, it is because I learned long ago that I could be my best for them by enabling the moment—by loving unconditionally and embracing the love we enjoy every day we have together.

Larry Vincent is a writer and marketing executive who lives in Los Angeles. His daughter Jordan has been a “cancer slayer” since 2004. She is also a proud ALSF Hero Ambassador. Follow Jordan's story here. 

 

 

 

 

 

Every donation to Alex's Lemonade Stand Foundation for childhood cancer helps researchers get closer to a cure for cancer.

 

by Trish Adkins, ALSF

Every time you make a donation for a cup of Alex’s Lemonade, you are moving researchers closer to breakthroughs. Since our beginnings, Alex’s Lemonade Stand Foundation has been dedicated to funding innovative, cutting-edge childhood cancer research. With your support, we’ve funded over 690 research grants since 2005!

Here are five researchers that you are helping to make breakthroughs, one cup at a time:

1. Dr. Michelle Monje—Leading the way in DIPG research
The five-year survival rate is zero for children battling diffuse intrinsic pontine glioma (DIPG), a tumor in the brainstem. This is because DIPG cells intermingle with healthy brain cells in the brainstem making surgical removal impossible. As the cancer cells multiply, the healthy cells are unable to do their critical jobs of controlling breathing, heart rate and blood pressure.

Now, for the first time in many years, a researcher has made an incredible breakthrough that could mean hope for these children and their families. ALSF-funded researcher Dr. Michelle Monje, from Stanford University, discovered that an existing drug called panobinostat slowed the growth of DIPG cells in the lab. Dr. Monje hopes through highly controlled clinical trials and in combination with other drugs, panobinostat could provide true hope to children with DIPG. 

2. Dr. Rebecca Gardner—Innovating CAR T cell immunotherapy for relapsed leukemia
ALSF-funded Young Investigator Dr. Rebecca Gardner has used CAR T cell immunotherapy to help patients with relapsed Pre-B acute lymphoblastic leukemia (ALL) reach remission. The clinical trial used the patient's own T cells and genetically modified them to allow the T cells to recognize leukemia and eliminate the disease.

In the Phase I portion of this trial, 93% of patients reached remission. Phase II of the trial is now underway. Read more about Dr. Gardner’s research and CAR T cell immunotherapy in our 2017 Spring newsletter.

3. Dr. Anthony Faber—Targeting high-risk neuroblastoma
Dr. Anthony Faber, from Virginia Commonwealth University, is studying how an existing FDA-approved drug could be a breakthrough for children battling high-risk neuroblastoma.

The research, done by Dr. Faber and co-awardee Dr. Yael Mosse of The Children’s Hospital of Philadelphia, has led to the understanding that MYCN-amplified neuroblastomas (historically making up a group of neuroblastomas with the poorest survival rate) are remarkably sensitive to the FDA-approved drug, venetoclax. Venetoclax works by targeting a protein that is particularly important in MYCN-amplified neuroblastoma.

Together, these researchers demonstrated that this drug is even more effective in combination with other drugs, including Aurora A inhibitors which are being tested in patients currently. This work has set the stage for more upcoming venetoclax-based clinical trials.

4. Rita Secola, PhD, RN—Ending central line infections
Most children battling cancer have a surgically placed central venous catheter (CVC) or “central line” for the delivery of frequent treatments. The CVC is an alternative to an IV line and can minimize the number of needle pokes for children in therapy. Hospitals use the CVC to deliver medication and also for blood tests. While the CVC remains in place and can be used multiple times (compared to a traditional IV which is removed after one treatment), it also presents a risk of dangerous bloodstream infections in children who already have weakened immune systems. 

Tapping into her nearly 20 years of clinical experience with young patients and families, Rita SecolaPhD, PhD, RN, at The Children’s Hospital Los Angeles (CHLA), has been researching what protocols reduce bloodstream infections and what factors make infection more likely in children with a CVC. During her research, Secola and her team discovered that ongoing nurse education and compliance were most critical to reducing infection rates.

Her team worked to develop education modules, checklists and guidelines for the nursing staff. As a result, the CVC infection rates at her hospital remain below the national rate and in recent months have been reduced to zero.

5. Dr. Jean Mulcahy Levy—Using Nobel Prize award-winning science to attack brain tumors
In order to survive, all cells of the body are constantly recycling within themselves, taking proteins inside the cell, scooping them up, breaking the proteins down and releasing the energy back into the cell as new building blocks. All cells—even cancer cells— perform this process, called autophagy.

Jean Mulcahy Levy, MD, from the University of Colorado Denver, is studying how stopping this process can be an effective treatment for some types of brain tumors, bringing real hope to children battling cancer. Her research on autophagy is based on a discovery by the 2016 Nobel Prize winning scientist Yoshinori Ohsumi. Dr. Levy’s research discovered that in brain tumors with a BRAF mutation, inhibiting autophagy can stop the tumors from becoming treatment resistant, allowing chemotherapy to work and eliminate the disease.

This weekend, make it your goal to swing by a local lemonade stand to make a donation and help researchers get closer to breakthroughs! To make that goal easier—we have a handy lemonade stand finder right on our website! Simply type in your zip code and you will receive a list of local lemonade stands. If you don’t see one, maybe you could host one (It’s easy!)  or choose a stand and make an online donation!

 

Categories: 
Research
It's not too late--you can put together a lemonade stand quickly with these great Pop Up Lemonade Stand Tips!

by Elisa Heisman, ALSF Communications Manager

The end of the school year is so busy and brings our household a lot of happy chaos. It’s hard to keep everything straight. Luckily, I have a great to-do list. 

  •     Sign son’s permission slip for his 7th-grade field trip (Done!)
  •     Attend daughter’s dance recital (Check!)
  •     Write check for final summer camp payment (Paid!)
  •     Set up a lemonade stand for Alex’s Lemonade Stand Foundation 

OMG! That’s NOW! Good thing it is so easy to set up a lemonade stand! Hosting a stand is important to our family because it teaches our kids that even a small, neighborhood lemonade stand can make a difference and give back to those in need. Here’s how we make it happen:

    1.    We set up a long table in our front yard and tie some yellow balloons to the mailbox post. We also print out some of the great ALSF signage available on the website! 
    2.    The kids bake cookies and cupcakes the night before OR we grab some baked goods at the grocery store. 
    3.    The lemonade is made first thing in the morning and ready to serve.     
    4.    We tell our friends and neighbors and invite them over! 

I post my stand on my Facebook page and on our neighborhood Facebook group asking people to stop by and say hello. I send an email out to my friends and family a few days before our stand so that they know when to stop by. And voila: instant lemonade stand.

You can do it too! 

What are you waiting for? Register your lemonade stand today and don’t forget to check out the great printable signs, coloring pages and other materials available on our website! 

Elisa Heisman is the Communications Manager at Alex’s Lemonade Stand Foundation. Lemonade has always been her favorite drink on a hot summer day and to bring together one of her faves with a great cause – is always a good thing. 

Categories: 
Lemonade Days
The CBS Alex Scott Stand For Hope begins at 6 am on 6/8 on CBS 3 in Philadelphia.


by Perry Casciato, CBS3/CWPhilly Program Director and Executive Producer Alex Scott: A Stand For Hope Telethon 

Each year, CBS 3 in Philadelphia holds a 14-hour telethon to raise money to support the work of Alex’s Lemonade Stand Foundation. Perry Casciato, the CBS 3/CW Philly Program Director and Executive Producer for the Alex Scott: A Stand for Hope Telethon, shared with us why this is one of his favorite days of the year. Keep reading and of course, save the date, this year’s telethon begins June 8 at 6 am.

It wasn’t my idea to start a Telethon. I didn’t know how to run a Telethon. I was too busy with other projects to help produce a Telethon. There are lots of reasons not to have a Telethon. I found out quickly though that there are also a lot of reasons to in fact have one.  

Alex Scott and her legacy are reasons to have a Telethon. I didn’t know Alex, but I am inspired by her life. I think about the obstacles she overcame. I think about the simple message she communicated so effectively. As we are planning for the Telethon, I often watch an interview clip of Alex where she answers the question about why she started her lemonade stand with a simple and powerful statement “It’s helping people”. Each year, we are able to tell Alex’s story at the Telethon and remind people of her mission. Our Telethon is a way for people from all over to actively participate in Alex’s dream.

Liz and Jay Scott are reasons to have a Telethon. Each year, we ask Liz and Jay to explain the significance of the Telethon and how the money raised is used to make progress in the fight against childhood cancer. I am consistently amazed at how both of them are able to carry the memory of their daughter forward and ensure that her life’s work has a real impact for the many other families walking a similar path. As a parent myself, I am impressed by their tenacity and advocacy on behalf of their daughter. I hope that the Telethon gives them a chance to see how their daughter’s life rallies a community to come together. A highlight of the Telethon for me is a video clip of Jay saying that his goal is to find a cure so that Alex’s Lemonade Stand Foundation can be put out of business. What a special day that would be, to end the Telethon because our mission has been accomplished.

The Hero Families are reasons to have a Telethon. What an amazing group of people we have met over the years. We now know many families that are in their own personal fights against childhood cancer who are willing to come on TV and share their personal stories in the hope that their words will inspire others to call in with a donation.These families are true ambassadors. They raise money on their own through various lemonade stands and fundraisers, but they also come together to support one another. They share their stories, they share treatment options, they share doctor recommendations and they share themselves with all of us. A few years ago, we decided to designate the 7-8pm final hour of the Telethon as a special Hero Hour where we would have only Hero Families on the telethon phone lines. There are so many families that participate in that hour that the phone area is often overpacked with people – extra chairs, kids on laps, people standing in the aisles. To some, it may look a little like chaos. To me, it is a beautiful culmination of the day’s activities and a reflection of how many families are in this fight and need our support.

The Children’s Hospital of Philadelphia (CHOP) Nurses and the volunteers we see every year are reasons to have a Telethon. For 11 years now, a group of CHOP nurses has volunteered to answer the phones during our earliest Telethon shift from 6-7am. Many of them are at the TV station even before I walk in the door. They are enthusiastic and positive and they help us kick-off the day with a tremendous amount of energy. I see familiar faces coming back every year and each year they find new ways to engage. I think they were the first group to start holding up “Call Me” signs, to text their friends and family from their seats at the phone to encourage them to call in and to start handing out business cards to let people know when they would be at the Telethon. After their shift on the phone, many of them then leave us to go back to their regular work shifts. I am very thankful that the CHOP nurses have proven to be one of our most dedicated annual volunteer groups. 

I should also add that I am also very thankful to all the other volunteer groups that return year after year. They dedicate their time and their energy to make sure that we have a successful day and I appreciate all their efforts and passion for the cause.

My colleagues at CBS3 are reasons to have a Telethon. Our staff works hard 365 days a year. They are always striving to be the best at what they do. They take immense pride in their work and the reputation of the station. When there is a news emergency like a snowstorm or a hurricane, they come to the station to get to work, while other businesses are sending employees home. Each year, I am always thoroughly impressed by the compassion, care and enthusiasm our staff brings to the Telethon broadcast. Every station department works to make it the best day possible. They bring innovative ideas every year. They look to tell stories in a more compelling way every year. They interact with the Hero Families with compassion and care. They put the volunteers at ease. I am very proud of the place I work and the people I work with when I see them in action on Telethon day.

The first phone call is the reason to have a Telethon. On June 8th, we will host our 11th annual Alex Scott: A Stand For Hope Telethon. Many of us will be there before it officially starts and we will be there on clean up duty after it ends. We will be tired and exhausted, but we will also be amazed and inspired by the people we meet, and the money we help raise in the fight against childhood cancer. Some people get very focused on the total amount of money raised each year by the Telethon. It always ends up being a very significant number and there is always a competitive spirit that the new number exceed the previous year’s number. That part is important, but it is not the most important part of the day to me.  

My favorite part is actually the very first phone call of the day that comes into the Telethon. Many years that call has actually come from my mom or my dad. They know how important and how special this day is to all the people who work on it and all of the people who benefit from it. That very first call reminds me that there are viewers listening and responding to what we are trying to do.  

At the end of the day when the Telethon concludes, all of us involved will have the privilege of knowing that we were a part of something positive, something that brought people together, something that helped people. Those will all be reasons to have a Telethon. And then the next day, we will start thinking about next year’s Telethon.

The 11th annual Alex Scott: A Stand for Hope Telethon kicks off Thursday, June 8 at 6 am on CBS 3 and The CW Philly from the CBS Broadcast Center in Philadelphia. Tune in live online , call 1-844-977-CBS3 to donate or donate online.

 

 

 

 

Perry Casciato is CBS3/CWPhilly Program Director and Executive Producer Alex Scott: A Stand For Hope Telethon. He is one of the reasons why Lemonade Days is the best time of the year. (Although he would not take credit for that.) 

Categories: 
Lemonade Days
Learn the story behind the Alex's Lemonade Days and Alex's Original Stand for childhood cancer.

Back where it all began. ALSF Founder Alex Scott, above, at one of her lemonade stands. 

by Trish Adkins

It all started with one front yard lemonade stand. 

ALSF Founder Alex Scott had one big idea: to host lemonade stands to help other kids just like her feel better. When Alex was just 4-years-old, she hosted her first lemonade stand. That first stand kept growing each year and four years later, when Alex was 8-years-old, her lemonade stand raised $1 million for childhood cancer research.

The last stand that Alex would attend was held at her elementary school, Penn Wynne Elementary School in Wynnewood, Pennsylvania. Now 13 years later, Penn Wynne still hosts Alex’s “Original” Lemonade Stand on the second Saturday in June. 

We spoke with Alex’s parents about the early days of Alex’s Lemonade Stand Foundation and how Alex’s “Original” got its start. 

What are the origins of Alex’s big idea for a lemonade stand?

Jay:
Alex was 3-years-old and after many sit-downs with the doctors who offered us little hope, we heard of another doctor and an experimental treatment at Children’s Hospital of Philadelphia (CHOP). We made the trip and after Alex finished the treatment, she told us it had worked. She knew she felt better. Alex felt so good and I guess that gave her the idea that that was more to be done as far as research went.  

Liz:
We got home and Alex said just randomly, “Can I have a lemonade stand?” I didn’t think much of the request. It was the wintertime and it was cold outside, so I just told her we could when it got warmer.

Jay:
Alex kept asking. First, it was once a month, then once a week, then eventually once a day. Finally, Liz asked her “What is it you want to buy so badly?”

And when you asked her what she wanted, what did she say?

Liz:
She said she did not want anything. Alex said she wanted to help her doctors help kids like they had helped her. I was proud of her. But honestly, I thought it was adorable that she thought she could solve a big problem like cancer with a simple thing like a lemonade stand. 

Tell me about building her original stand. 

Jay:
Her first stand was just a little plastic kid-sized picnic table, one pitcher of lemonade and some handmade posters that Liz and the kids had made. It was nothing elaborate or that required a lot of time to build. We still tell people today that they can certainly build a stand if they want, but they do not have to – it can be as simple as a decorated table!

What was that first stand like?

Liz:
We had her first stand in Connecticut before we moved to Philadelphia. Friends and family showed up and remarkably, total strangers as well. We were blown away by the generosity of people and shocked that Alex was able to raise $2,000 with her stand that day. When I tucked her in at night, she told me that it was the best thing that ever happened to her. I knew then that it was really important to her – more than I had realized.  

Jay:
It was amazing, people came, some with smiles, some with tears, but they kept coming and coming! I had never seen anything like it before -- certainly not a lemonade stand like that before.  

What did Alex want you to do with the money?

Liz: 
For the first few years of her stand, we donated it for neuroblastoma research at her hospital, since she was battling neuroblastoma herself that made sense to me. One day Alex asked me what we were doing with the money and when I told her, she said “That is so selfish. All kids want their tumors to go away. We should be giving to all hospitals for all kinds of kids' cancers.” 

I knew then that she was right; this was not about finding a cure for her. It was about truly making a difference for all kids with cancer.  

How did Alex’s Lemonade Days evolve?

Liz: 
Alex’s first stand was held in our front yard in Connecticut. Then, when we moved the Philadelphia area in 2001,  Alex had all of her stands in our neighborhood outside of Philadelphia. The Philadelphia Inquirer ran a story on her second Philly stand in 2002 and that is when things really started to take off. People started sending money to her from all over the country and they were holding their own lemonade stands as well.   

Jay: 
Alex kept holding stands in our front yard. Each year, she raised more money and her efforts were growing and growing. However, by 2004 the experimental treatments had stopped working. That is when Alex became even more determined to change things for other kids with cancer – she wanted to have one last stand and she set a goal of raising $1 million! When we asked her how she would raise a million dollars with a lemonade stand, she said, “If everyone has lemonade stands, I think we can do it.” That was the beginning of Lemonade Days—Alex really created that event.  

Liz:
It was incredible how people answered Alex’s call to action. Alex was on The Today Show and so many other news outlets. They were contacting us and telling us they were going to hold a lemonade stand. On the same day as her last stand, there were stands all across the country and donations flooded in. She was able to reach her goal by mid-July 2004 (with big help from Volvo*, who took her over her goal with a big donation). She passed away just 2 weeks later on August 1st — and I am so grateful that her final goal was met, that she was able to see the incredible support. I like to think that she knew it would continue without her, until the day when all children with cancer are cured.  

Each year, Alex's “Original” Stand is held at Penn Wynne Elementary School? Why is the school so important to the Foundation?

Liz:
When Alex was alive, Penn Wynne Elementary was her school. All 3 of her brothers have also attended, and we live just two blocks from it, so it is personally important to our family. The staff and families gave Alex and our family unconditional support. When Alex’s stand had outgrown our front yard, the principal of the school offered to move it to the school. This was the perfect place to hold her last stand—right in our neighborhood with all of our friends. After Alex passed away, the school continued to support our family in upholding her annual lemonade stand tradition.  

Jay: 
Even though our kids no longer attend Penn Wynne as they have moved on to middle school, high school, college and beyond,  we are amazed at the support the school community still shows for Alex’s cause. The kids love it and their families come out to support the stand even though they never knew Alex or our family. 

What is the energy like at Alex’s “Original” Lemonade Stand?

Liz:
It is a great day; so much fun for families with so many activities and things go do. But mixed into the fun are many reminders all day long of why we are doing it.  There are childhood cancer hero families who attend, we have a butterfly release to remember Alex and all children with cancer, and of course, photos of Alex and a beautiful wishing garden.  

Jay:  
We set up one of Alex’s lemonade stands. That small stand, amidst all the bigness of the event at Penn Wynne, reminds us how everyone can make a difference. That is the lesson that Alex taught us and curing childhood cancer is the job she left for us. 

Everyone wants their child to be successful in life. And Alex was successful. Her legacy and her dreams are coming true. We see it when we read the amazing scientific breakthroughs that our grants are making possible. We feel it when families tell us how ALSF helped them get to treatment. Alex’s “Original” is a celebration of where we came from and where we will go.

​Attend Alex’s “Original” Lemonade Stand! 
Appropriately named Alex’s “Original” Lemonade Stand, Alex’s friends and family continue to hold her stand which has evolved into a family fun event complete with food, games, crafts, face-painting, music, raffle baskets and (of course) lemonade, held at the school Alex attended, Penn Wynne Elementary School.

Amidst the fun is a beautiful butterfly release to commemorate and celebrate the lives of all children fighting cancer as well as those who have lost their life to the disease. In addition, Alex’s parents and brothers attend the event as well as several other childhood cancer heroes and their families. *Also, you can purchase a $25 raffle ticket to win a car from Volvo! Get the details here. 

You can purchase an Alex's All Access Pass that includes all donations for activities, food and a commemorative Alex's "Original" t-shirt. Purchase your pass here.

Categories: 
Alex Scott

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