Rare Community Profiles: Battling Renal Cell Carcinoma and Oligodendroglioma Led Tony to Found a Nonprofit for Families Fighting Cancer

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Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.

Battling Renal Cell Carcinoma and Oligodendroglioma Led Tony to Found a Nonprofit for Families Fighting Cancer

Ten years ago, the then 29-year-old Tony Laudadio was on top of the world. He had a thriving sales career and was starting the next chapter of his life with his family.

So, it was shocking when—despite feeling healthy—Tony learned that he had renal cell carcinoma (RCC), a rare kidney cancer.

Even more shocking, two years later, he was diagnosed with grade 3 oligodendroglioma, a rare brain tumor unrelated to his initial diagnosis. Suddenly, Tony and his family found themselves grappling not just with the emotional weight of a diagnosis, but the physical and financial burdens of treatment.

Despite facing many challenges along his path, Tony’s resilience motivated him to help others by launching the Tony Foundation. This 501(c)(3) nonprofit organization has donated more than $680,000 to support cancer fighters and their families.

Recently, Tony spoke with Patient Worthy about his rare cancer diagnoses, enduring the treatment experience, the Tony Foundation, and why he is so passionate about supporting families impacted by all types of cancer with necessary financial aid.

Tony began the Tony Foundation after his fight with oligodendroglioma and renal cell carcinoma
Photo courtesy of Tony L.

JL: Hi Tony! Thanks for speaking with me today. Just to begin, tell me a little about yourself.

TL: My name is Tony. I’m an outgoing person who loves to golf, play pool, travel, and be on the beach. Since the age of 29, I have also been a cancer fighter, a dad to three daughters, and a motivated nonprofit director on a mission to change lives for cancer fighters.

Before I became sick, my background was in sales. My main objective was to be the best that I could be and to separate myself from my competitors. I always worked endlessly to help my customers get what they paid for. Nowadays, I try to get cancer fighters what they deserve: crucial assistance that people who are ill shouldn’t have to fight for.

JL: What made you initially pursue a diagnosis for renal cell carcinoma?

TL: I had blood in my urine over a few months. But I didn’t realize that was what was happening. I thought it was something that I was eating or drinking, and since I felt healthy, I just didn’t think that there was anything wrong. It took me nearly six months to get checked out, and doctors first ordered urinalysis. When that came back clean, my doctors ordered a CAT scan.

It was then that they found a mass in my abdomen. The tumor on my kidney was massive, measuring 16cm in diameter. I was told that I had renal cell carcinoma. From what I’ve gathered, it’s rare to keep a kidney when you develop RCC. Usually, it’s safer to remove the affected kidney to prevent further issues or metastasis. So that was what I did: underwent surgery. I thought I was on the road to recovery, but life had other plans.

JL: Two years after being diagnosed with RCC, you learned that you had brain cancer. What happened that made you pursue a diagnosis?

TL: In 2015, I had two episodes within a week of each other where I lost feeling in the entire right side of my body. The first time it happened, I was concerned because I dropped my phone and had zero bodily control. The second time, a week later, I dropped a cup of coffee at a coffee shop. I just had this nagging feeling that something was wrong, which was concerning given that I had already dealt with cancer. I never thought I had a brain tumor, though. But I wanted to get looked at by my friend Andy Willis, who is an ER doctor.

On September 24, I was diagnosed with grade 3 oligodendroglioma. Andy was very thorough and gave me an explanation of what I had and what might lie ahead. Soon after, I began speaking with oncologists about how to deal with the brain tumor. I’m very lucky to have quickly gotten an appointment with one of the best brain surgeons in the world at MD Anderson in Houston. I look back and am so thankful for the support I had: amazing doctors and surgeons, caring nurses and social workers, and family and friends to support me. I always tried to keep in mind that my doctors had it tough too and tried to bring a smile to my nurses’ faces or joke around with my doctors who are often dealing with life-and-death situations.

Even though I was facing a brain tumor, my mental health was strong since I had so much support and had already fought cancer. Of course, there were still challenges. It affected my family. My kids were scared. They asked questions that were hard to answer sometimes, but I tried to be honest with them because it showed them how to fight through adversity, to be positive and do it with a smile on their face.

JL: You underwent an awake craniotomy for your brain cancer. What was that experience like?

TL: The awake craniotomy is so rare and unbelievable. I meditated the night before to prepare for what was going to be one of the wildest experiences of my life. When I woke up in the operating room, I had a crowd of people talking to me. Even though I had a drape covering half of my face, I could see, feel, and hear as the surgeon worked to remove as much of the tumor as possible. I was doing math and joking with people in the room about football. I felt like my preparation couldn’t have been better. My mindset was I could do it. What was the alternative?

The skullcap isn’t very thick, so when he was cutting into the brain, it just felt like pressure. I began asking the surgeon if he used a particular blade. At the time, I sold medical equipment. But he was trying to stay hyper-focused on the task ahead.

The craziest part of the awake craniotomy was that my entire right side started to vibrate at one point. I asked if that was normal and the entire operating room grew quiet. It wasn’t until days later that my surgeon said there was a strong chance I would’ve become paralyzed if he had gone any further. That was jaw-dropping. It shows how close everything is to taking a turn for the worst. That feedback meant ending the surgery, but they had already removed a majority of the tumor.

It took everything I had to get back to some normalcy after the surgery even though I knew life would never be the same. I would always have brain cancer, and I developed neuropathy on my right side, which has never gone away. But most people don’t even know that I have it because of my willpower and physical therapy.

JL: How are you doing today?

TL: I’m doing well! My diagnosis comes with physical challenges and also some mental hurdles. I try not to focus on the what-ifs or what could be’s, but instead focus on being in the present as much as possible. Somebody told me a few years ago that the only thing that’s predictable in life is unpredictability. I’ve learned to adapt. I see adversity as an opportunity to become a better person. I do my checkups, my scans, and my bloodwork and I don’t get annoyed. I just embrace it because if I want to survive, if I want to live a long life, this is just part of the routine. I feel like I know my body a lot better than I did ten years ago.

 JL: Tell me more about the Tony Foundation and how that came to be.

 TL: I admire anyone who embarks on starting a nonprofit because I know how hard it is and how much of a sacrifice it has been for me to not go back into my previous career but to focus on the mission that I was given and the calling that I had while lying in that hospital bed at MD Anderson.

My friend Scott and I created the Tony Foundation to provide financial assistance to help meet immediate and existing needs for families whose primary income earners have been diagnosed with cancer. The Tony Foundation is unique. I wanted it to make a direct impact on cancer fighters quickly and not have to wait for a long time after filling out an application. When I was sick, some companies would ask me to fill out 20-30 page applications, which I found ridiculous. Our application is one page. Give me your story and your information, and our team will identify the people who are battling cancer and are in real need of financial help.

The Tony Foundation offers a Resources section on our website with different partners who can offer assistance with disability, financial management, and nutritional changes. We also offer families $5,000 grants. Nobody had anything like this when I was sick. There is a mental, emotional, and physical side to cancer, but the financial aspect is often left out. We’re often told by medical professionals that we are a great tool in their toolbelt because so many cancer fighters are overwhelmed by the financial strain.

JL: Can you tell me more about the financial strain?

TL: I believe that much of the physical and mental hardship in cancer diagnoses is created by financial stress. Over 80% of people diagnosed with cancer face financial hardships. I’ve had social workers at oncology clinics tell me that finances are the number one stressor for cancer patients. And that’s really horrifying considering that most people have been touched by cancer in some way: whether it’s themselves, a family member, a friend.

Cancer research is tremendous. But what does it do right now for the single mom battling breast cancer at age 35? What are research dollars doing for the father with colon cancer who was forced out of his prosperous career, and his wife who quit her job to care for him? Where is their money coming from? We recently heard from a cancer fighter who was ready to give up. Finances were tight, he left his career, and then the family car broke down during treatment and would cost $3,000 to fix. He felt like he was becoming a burden. Once he received the grant, he could fix the car and begin treatment again. The social worker told us we may have saved his life. That is a game changer.

Most people are not prepared for the medical bills that pile up regardless of your insurance. And who could be? That is what drives us. At the Tony Foundation, we are also endlessly thankful for our monthly donors. It’s hard to accurately portray how $10, $20, $30 a month will help cancer fighters, but it all adds up and makes a difference. These cancer fighters need help paying for their home, utilities, groceries, insurance, childcare, experimental treatments, medical bills, transportation, and more. Our donors are the backbone of how we can help so many people, and we are so thankful for everybody who chooses to donate.

JL: I see that the Tony Foundation doesn’t have a restrictive process for how recipients can use the funds. Why did you decide to structure the process like this?

TL: We decided to make it no-strings-attached because I know what it is like to be a cancer fighter. Everyone is telling you what to do, and what you shouldn’t be doing, at all times: your partner, doctors, family and friends, nurses. The last thing I wanted to tell our recipients is what they can or cannot spend money on.

We feel like, if fighting cancer or facing the chance of not having long to live, why can’t they take a beautiful trip with their families to create lasting memories? Why can’t they catch up on their mortgage so they don’t have to worry about losing their home? If they need to pay for some medical bills, they still deserve a night out to feel like a normal person again.

I believe that people forget, or just can’t really understand, how much of an island you’re on when you have cancer. Nobody really knows what you’re going through and it can be so lonely, especially if you can’t do certain things that you’re used to doing when you’re healthy. I had friends that took me out even though I was getting ready to start chemo again. We took vacations in between treatments. Not everyone can do this financially. But these people still deserve a break. I truly believe in our mission and we don’t need people to put together a package of utility bills or mortgage statements just to prove that they need help.

That being said, we do collect a W-2 or paycheck stubs to ensure that people who are getting the help will benefit from a $5,000 grant. But we recognize that every situation is different.

I want to continue this and continue advocating for our recipients in whatever way possible. Outside of the financial assistance, I like to offer resources or just a helping hand. Oftentimes, we become friends and stay in touch. These recipients are truly the Tony Foundation family. That’s the most rewarding part for me: helping others, doing work for strangers who became friends just because we both became sick.

 JL: How has your life changed since your diagnoses and since starting the Tony Foundation?

TL: In all honesty, I believe that cancer improved my life. I treat my body differently. I don’t do anything in excess anymore. I recently became a vegetarian and have more energy. I now see what is really important in this world and how crucial it is to make a lasting impact. Life isn’t all about money, and I encourage people to spread wealth. Our healthcare system isn’t ideal, but I am doing all that I can to help others. The Tony Foundation reminds me that life is about improving the world for all people, and I hope to continue serving the families we can help.

JL: Do you have any advice for someone who is newly diagnosed?

So many of our 130+ cancer fighters have said that the Tony Foundation has brought them hope. I feel like we are on earth to help others, and this is why I will continue imparting my experience and assistance to others. If I can make someone else’s life better because of my struggles through cancer, I think that is beautiful. Talking people off the ledge is extremely rewarding, and I hope everyone knows that they can always reach out to me for help.

For the advice, I would say…

  • Don’t underestimate the power of positivity. This experience can positively alter your perspective. Some days are hard, but it will teach you how to take a situation and spin it into hope rather than hopelessness.
  • Reach out for support and help. You’re not alone in this, and there are people who are waiting to help.
  • Most of all, remember—this may be life-changing, but it is not a death sentence.
Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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