In the past six months, the women’s basketball community has lost two longtime members after long fights with breast cancer – Nikki McCray-Penson and Tasha Butts. These women were entrenched in the women’s basketball community, playing at Tennessee before moving to professional basketball and coaching careers. Their fights inspired many, and the community rallied around them.
“We’ve been hit hard this summer,” said Tennessee women’s basketball head coach Kellie Harper. “So, it’s really fitting that we are able to be the ones to tell the story. We’re the ones to step on the court and play in this big game, and to understand that sometimes, it’s bigger than a game.”
When Connecticut men’s basketball star Donovan Clingan thinks of basketball and his mom, one particular story comes to mind.
He was in eighth grade playing travel basketball and his mom, Stacey Porrini Clingan, in the midst of cancer treatment, was in the stands. Donovan, a big man on the court even then and now 7-foot-3, was getting fouled continually throughout the game.
Stacey was an excellent player in her own time, enjoying stellar high school and collegiate careers at Bristol Central High School (Conn.) and the University of Maine, respectively, and recently inducted into the university’s Sports Hall of Fame. At 6-foot-4, she was a great athlete. She held the rebounding record at Bristol Central for years, until Donovan came along.
But, at that game in Donovan’s eighth grade year, Stacey was sure to let the referees know they were missing calls. She was standing up for her son.
“The refs weren’t making any calls and she actually ended up getting ejected out of the game from the stands,” Donovan said while smiling. “And that just showed you how much she cared about me.”
Basketball was their thing. And now, in her absence, it’s a way for him to stay connected to her.
Stacey was diagnosed with breast cancer in 2010 when Donovan was around six years old. She fought for a few years before the cancer went into remission. Donovan was young and didn’t fully see what was going on, but he knew his mom beat cancer, had started teaching again and was back to normal.
Then, about five years later, the cancer came back and spread. This time, being a young teenager, Donovan witnessed what his mom was going through. It was a long battle of doctor’s appointments, hospital visits, treatments and more.
Before every Longhorns game, Abbie Boutilier looks to the stands for her parents and her twin sister, Paige. December 3 will be no different.
Abbie, a freshman on the University of Texas women’s basketball team, will join her teammates in taking on UConn in the annual Women’s Jimmy V Classic. To Abbie, this game means more than just the score.
“I think to me and my entire family, it means a lot. We’ve always been into research and giving back since it’s been 10 years since she’s been cancer free. I think at this point, it’s how can we give back as a family who have been through so much and share our experiences and help people get through it.”
The Boutilier family was impacted by cancer in ways they couldn’t have imagined. Just days after Abbie and Paige’s fourth birthday, Paige was diagnosed with leukemia. She underwent treatment, but being so young, there was a lot of confusion and anxiety about the unknown.
Three years later, in 2011, the cancer came back. This time, Abbie was old enough to comprehend what was going on.
It was the day before his 64th birthday. Bill Snead was walking around a youth chess tournament in Dallas, away from his home in Amarillo, Texas. Working at chess tournaments is one of his favorite retirement hobbies.
As he was walking around the second and third grade section of the tournament, Bill felt a lump above his right nipple. He thought it was odd, but knew he wanted to get through the weekend tournament and his birthday the next day. He would think about it when he got home.
Fast forward a week, Bill and his wife drove to the hospital to get the lump checked out. He met with the doctor and upon one feel of the lump the doctor was confident it was cancer.
“The doctor felt it and knew immediately,” Bill said. “The lump had an indention in it right below my nipple, which led her to believe it was cancerous. All the medical students around were shocked and took turns feeling the lump.”
A biopsy confirmed the findings and Bill found out the next steps — right side mastectomy; six sessions of aggressive chemotherapy – Taxotere, Carboplatin and Herceptin. Then, 13 additional sessions of Herceptin. These were followed by nine years and two months of a nightly pill, Tamoxifen.
Throughout the process, Bill kept a log of how many times his port was accessed. He used the same sheet of paper every day. His port was accessed 34 times. During one treatment, at the top of the piece of paper, he wrote his personal mantra he maintained during treatment: Unstoppable.
“In the U.S., one man out of 830 is diagnosed with breast cancer. In my household, it was one out of one. Keep fighting this disease.”
DOCTORS TURNED HEROES
Just before his right mastectomy, Bill was given a shot as part of a test to see if cancer had made its way to his lymph nodes. He would find out the results following the surgery. Bill was put under anesthesia for the surgery, and it was successful.
Bill remembers waking up in the recovery room. As he came to, he looked around and saw the face of his surgeon, Rakhashanda Rahman, M.D., who was standing beside his bed. He immediately asked about the test result and was given the good news that it had not spread.
A patient’s relationship with their doctors can be strained through the stressful time of cancer treatment. No person would ever want to be in the position, so it can be trying and difficult.
Bill feels blessed to have been treated by his oncologist, Srini Reddy, M.D. One thought changed his outlook completely.
“My great realization in all of this was that the oncologist is not your enemy, cancer is your enemy.”
Bill doesn’t hesitate to call his doctors his heroes. To him, their knowledge and experience made his treatment smooth and successful.
RINGING THE BELL
A few months ago, Bill was told he no longer needed to be treated by an oncologist – he was officially released. It was a long 10 years of treatment, but now at 74 he is cancer-free and enjoys simpler things in life – his family and friends with the addition of chess problems, a little online poker and all kinds of puzzles.
When he was released from treatment, Bill was able to ring a bell to signify the end of his treatment. Prior to ringing the bell, he read a poem about his journey. That was a special moment, and one he and his family will never forget. The poem read:
“Ring this bell Three times well It’s toll to clearly say
My treatment’s done This course is run And I am on my way.”
Bill considers himself fortunate for the resources he had throughout treatment. Specifically, the support system of his family and the terrific medical personnel were a shining light through a dark time.
Now, Bill is eager to share his story to inform men about the risk they have for breast cancer and to encourage research around male breast cancer. With less than one percent of breast cancers being in men, the unsuspected fraternity Bill found himself in is scarce. He wants other men to know they are not alone. Doing a self-examination alerted Bill to something he needed to address.
While going through treatment, Bill saw the need for more research into men’s breast cancer, along with other types of cancer. His treatment was the same treatment as a woman with breast cancer might have, although some of the decisions and repercussions would not have impacted him. For example, Bill was taken off one medication because a study showed a connection between that medication and developing uterine cancer.
BILL SNEAD: SURVIVOR
Surviving cancer means a lot of things to Bill.
Surviving cancer means having a relationship with his older daughter, Kerri and her two sons. Linus was just a few months old when he was diagnosed, and Bede wouldn’t be born for three more years. It means his grandsons could blow out the candles on his 74th birthday.
Surviving cancer means being able to go to a Chicago Cubs game at Wrigley Field with his younger daughter, Tricia. It means you can ride on a bus and read “Cyrano de Bergerac” on the way home from the game eight years after surgery.
Surviving cancer means you can have your whole family sitting around the table working on a jigsaw puzzle during Christmas time. It means new memories to be made of your family together.
Surviving cancer means he and Margaret could celebrate their 50th wedding anniversary in February 2021. It means 11 more years with her and counting.
Surviving cancer means research is working.
More than 285,000 people will be diagnosed with breast cancer in 2022, approximately 15 percent of all cancer cases. The V Foundation for Cancer Research is proud to sponsor all-star scientists working to achieve Victory Over Cancer®. To read more stories of inspiration, learn about our researchers, check out our partners and give to the Clea Shearer Breast Cancer Research Fund, visit www.v.org/breast-cancer-awareness-month/.
Bill shared his story with the V Foundation. You can share your story HERE.
Although doctors and scientists have made significant strides in treating childhood cancer, there are still too many children experiencing tumors that don’t respond to therapy, spread to other parts of the body or come back later.
V Scholar Adam Shlien, PhD, from the Genetics & Genome Biology Program at SickKids and the Department of Laboratory Medicine and Pathobiology at the University of Toronto has devoted his career to finding better ways to fight these aggressive pediatric cancers so that more kids can go on to live long and healthy lives. His current work focuses on cancer “fingerprints”—the thousands of genetic mutations that are unique to an individual tumor. Studying these mutational fingerprints can reveal how a tumor arose or why it came back, information that is already leading to new treatment strategies.
“Rather than studying cancer in a dish or in the lab, we learn from the tumors themselves by using patient samples to study the critical pathways that drive cancer development,” said Shlien. “The patterns of mutational signatures can tell us what caused the cancer, when the mutations occurred and, sometimes, which treatments might work for an individual patient.”
Building the right team
Mutational signatures are a relatively new area of cancer research that came about thanks to advances in DNA sequencing technology and new computational techniques for analyzing the huge amounts of data produced by sequencing.
V Foundation support helped Shlien build the type of multidisciplinary team necessary to conduct this type of work. The team includes people with backgrounds in machine learning, statistics, computation and computer science, who he then trained in cancer biology. “It can be tough to recruit these types of experts because we’re in competition with tech companies, but, once brought into the team, they can have a massive impact in our understanding of pediatric cancer,” said Shlien.
Bringing their biology and technology expertise together, the researchers developed a computational pipeline to genetically analyze tumor tissue from hundreds of children who are patients at SickKids. Their algorithms crunch vast amounts of data to analyze a variety of tumor types at different time points to see how mutational signatures change over time.
“We aren’t just looking at a small number of genes—we are sequencing the DNA of the entire tumor genome and transcriptome,” said Shlien. “The Precision Child Health initiative at SickKids has given us the ability to broadly look for patterns by enrolling a large number of patients. Every patient teaches us something new.”
Through the V Foundation project, the researchers created a catalog of mutational signatures in childhood cancer and identified which signatures are most clinically important. They are now using their analytical processes and research findings to help patients who are currently being treated for cancer at SickKids.
For example, their work has revealed important similarities between some childhood cancers and breast and ovarian cancers caused by mutations in the BRCA1 or BRCA2 genes. “We knew that mutations in this pathway were present but weren’t sure that they were truly driving the childhood cancers,” said Shlien. “However, when we looked at the mutational signatures, we could see that the pathway affected by the BRCA mutation was dysfunctional. We’ve already seen some positive responses from giving childhood cancer patients similar PARP inhibitors that have been used to treat BRCA-related cancers in adults.”
The researchers are also studying associations between certain chemotherapy drugs and mutational signatures. These signatures might offer a way to figure out, early in the treatment process, which patients might be resistant to a specific therapy.
Fighting cancer is a team effort, and Shlien says sharing data with other doctors and researchers is an important part of his team’s ethos. In addition to sharing raw data such as DNA sequencing results, the team has developed tools that help translate their findings into information that can be used to directly help patients.
“It is our responsibility to learn as much as we can from every child who develops cancer and enrolls in one of these programs,” Shlien said. “Sharing data is the only way to make sure that any insight we derive from their tumor can help subsequent patients.”
[expandable topic=”Using technology to improve health”]Shlien was interested in the intersection between technology and health from an early age. “I was one of those kids who learned how to program and would take apart all the electronics in the house,” he recalls. “My mom tells me that she has a note I wrote in grade eight that said I wanted to be a cancer researcher.”
A high school science project further cemented his interest in cancer. For the project, Shlien micro-dissected a sample of a lung tumor he acquired with help from his mother, who worked at a hospital. “When the whole genomics revolution exploded [a few years later], it made me excited to find out how bioinformatics and computational expertise could be used to find even more insights into cancer,” he said. [/expandable]
Thaddeus Bullard, aka WWE Superstar and WWE Global Ambassador Titus O’Neil, has been dubbed one of the most philanthropic WWE Superstars ever. As part of the WWE Hall of Fame Induction ceremony, Bullard was recently named the 2020 Warrior Award winner for his philanthropic work. He is President of the Bullard Family Foundation and strives to make a difference in the Tampa Bay community.
To kick off pediatric cancer awareness month this September, Bullard, along with the Bullard Family Foundation and Heritage Insurance, gave a $100,000 donation to the V Foundation for Cancer Research through WWE’s Connor’s Cure.
Thaddeus spoke with the V Foundation regarding his upbringing, his involvement with WWE, the Bullard Family Foundation, his involvement with cancer and the generous donation.
The V Foundation:Your story is a powerful one, constantly overcoming obstacles that were in front of you from the day you were born. Two meaningful phrases from your childhood were “I love you and I believe in you” and “there’s no such thing as a bad kid.” How have you let those statements shape you to this day?
Thaddeus Bullard: “When I heard the statement ‘I love you and I believe in you’ it was at a time in my life where other people had told me that they loved me but then turned around and abused me, beat me and cursed me. Nobody had ever told me that they believed I could do anything. It was always the complete opposite. They always told me as a kid that I would never graduate from high school, I would never go to college, the list goes on and on. Being told that someone believed in me at the right time in my life gave me the confidence and understanding to start believing in myself. That switch is also what helps me talk to, inspire and motivate other people. At 12 years old I had this conversation, and my life was changed. So, my focus has been on kids, to get others to believe in them. You never know what can happen when you make the right investment into the right kid.
There are no such things as bad kids. You might have kids who are in bad situations, make bad decisions or have bad influences and have some bad outcomes. You take those same exact kids and put them in a good environment around good people they will have a better chance to succeed and a greater output. That’s how my life was. I was a kid in a bad situation and in a bad environment that got placed in a great environment around great people and I had a greater chance to succeed. Therefore, I became the first person in my family to graduate high school. I was the first person in my family to graduate college. I went to the University of Florida and played football there. I won numerous awards academically and athletically. I was the vice president of the student government there.
The phrases ‘There is no such thing as a bad kid’ and ‘I love you and I believe in you’ all go together in one direction. Folks ask me all the time why is it that I spend so much time and resources helping people, my response is ‘how could I not?’ I am here and I wasn’t supposed to be here.”
TVF: Growing up, you played football and then became a scholar athlete at the University of Florida. Did you have dreams of being involved with the WWE as a kid? What made you get involved with the WWE?
TB: “I was a huge fan growing up. I got into a lot of arguments with my mom about staying up to watch Monday Night RAW. Luckily for me, my grandmother was a huge wrestling fan. She would always go to bat for me, saying he will be alright and that she would make sure I would get up in the morning. That was our thing. Saturday mornings we would watch Captain Caveman, the Smurfs and then ‘wrastlin’, as grandma used to call it.
Growing up, many people on tv didn’t look like me. Junkyard Dog was probably my favorite at the time because he looked like me. Then Ron Simmons came along, and he was the first African American champion in wrestling. That gave me hope that me or someone that looked like me could do something like this and be very successful at it. Dave Bautista, one of my best friends, encouraged me to give it a try and pursue it. After my tryout, on my way home, WWE called and said that I would be given a shot. At the time I was supposed to go and coach football. I had to make a decision pretty quickly. Two weeks later I walked in that back door and I haven’t looked back. I am still here and in the Hall of Fame.”
TVF: The Bullard Family Foundation does a lot of work in your hometown of Tampa, Fla. One project in particular is the Thaddeus M Bullard Academy at Sligh Middle School. Can you tell us about that program?
TB: “It’s a public school that has the sixth-highest percentage of children living in poverty in the state of Florida. I started going to the school in 2016 and I was so excited to be able to do birthday parties for kids that couldn’t afford birthday parties because I had never had a birthday party as a kid. That morphed into not only doing birthday parties but also celebrating perfect attendance as well as academic increases. We didn’t limit it to honor roll students because not everyone iscapable of being honor roll students for various reasons. Everyone is capable of being an honor roll human being, which is why we titled the program Champions of Character.
“I was fortunate enough to have the opportunity to speak with someone with the school district and that is how we emerged with plans of what I thought would be a pretty cool vision of the school. We felt it could change the area and community and hopefully have a domino effect so that other celebrities, athletes and business leaders decide to invest in public schools and inspire transformations. We are doing really cool things. We take these kids to football games, hockey games…Universal Studios. We do a lot. It helps the entire Bay area.”
“We have two full-time staff members that work with students in career services. They work with students on getting jobs, writing their resumes together. Interviewing skills. Getting professional training. We have a culinary program there as part of the Feeding America network. We have students that are 18+ that are making a livable wage and going to culinary class four days and working out of a warehouse one day. They can get their certifications to be able to do more when they finish. We have two community gardens on campus, and one of the community gardens is provided by WWE.”
All the people around me have the same goal in mind and that is to make a transformational change in the kids. We have a very high standard of excellence; we expect excellence and greatness out of each and every person we come in contact with. We possess the knowledge that we are not perfect people but when we align ourselves with great people, great things can happen.”
TVF: Cancer impacts everyone, whether through yourself, friends or family. How has it impacted you?
TB: “I lost my grandmother to breast cancer in 1995. Before I met Connor Michalek, I met a kid named Logan from Tampa, Fla. Logan was five at the time. I randomly met him when I received a Facebook request saying that he wanted to meet a WWE Superstar and I actually had a meeting with him two days later. I got the message in my inbox and got up early and put a bunch of stuff together. I was assuming I would meet the kid, talk to him, meet his family and then leave. I ended up driving an hour and 15 minutes from my house. I went out there and mom and dad came out and mom had tears in her eyes. She was so thankful that I came saying that Logan was going to love this. I walked into the house and Logan sat up and smiled and then his mom started bawling. His dad said that was the first time they had seen their son smile in three months. They didn’t have a gaming system to play a WWE video game I had brought, so I got in my car and rode down the road and bought them a PlayStation. Then I took it back and got it hooked up and played with them. What I thought was going to be a 20-minute meet and greet ended up being four hours. We played games and everyone was happy.”
Not long later, while I was at a soccer practice for my sons, I got a phone call from Jim, Logan’s dad. He was crying and said Logan was gone. I talked to Jim and offered if there was anything I could do and see if his other sons could come to my house while they made arrangements. They came to my house, played with my kids, went to the movies and hung out. That was my first time going to a funeral for a kid. Maybe three weeks after I met Connor Michalek and, not too long after that, Connor lost his battle. Unfortunately, there are a lot of kids.”
TVF: A few weeks ago, you announced that the Bullard Family Foundation and Heritage Insurance was donating $100,000 to Connor’s Cure through the V Foundation and that your contribution would support the Dick Vitale $1 million Match Challenge during pediatric cancer awareness month. Why is cancer research important?
“Dick Vitale kicked off this month with a $1 million challenge to raise money for kids. I’m very proud that the Bullard Family Foundation along with Heritage Insurance could kick off the campaign with a $100,000 donation in honor of Connor Michalek, his family and Connor’s Cure. This was not the first time we have donated to the V Foundation. We just wanted to do it before the month started and this story was just the perfect way to kick off the campaign the right way.
Some people ask about my affinity with the V Foundation and helping kids with cancer. A very small percentage of government funds are going toward helping these families and these children. We need to make up for it. There are too many talented doctors, talented researchers, that don’t have the funding to go and accelerate finding a cure. If we could get that funding, not only can we help accelerate finding a cure, but we could help spread that message a little bit.”
TVF: At the V Foundation, our mantra is simple – Victory Over Cancer®. What does Victory Over Cancer mean to you?
TB: “Victory over cancer means we came out on the winning side. No more kids are affected. No more families are affected by this disease. It will be fully eradicated. Anyone who has played a team sport knows that it takes everybody to have a culture of winning and tradition. Part of being a great team and a great coach, you have great doctors and you have great facilities. The V Foundation has a great amount of support and a lot of great sources. People should believe in the V Foundation and what it stands for. If all of us work in the same direction, we will achieve Victory Over Cancer.”
When a loved one is diagnosed with cancer, time becomes one of the most valuable gifts in the world. Manny Almario, a devoted husband and father, Bristol Myers Squibb oncology team member, and cancer research advocate, knows this feeling all too well.
In 2013, Manny’s wife, Theresa, was diagnosed with endometrial cancer at just 40 years old – nearly 20 years younger than the average age for this type of cancer.
“She is not the typical profile, but cancer doesn’t discriminate,” said Manny. “You can be hit when you’re young or old, whether you’re a woman or man. You don’t expect it, but it could happen to you.”
After an intensive treatment plan, Theresa was declared cancer-free and remained in remission for five years. During that time, Manny recalls resuming a busy and fulfilling life together with their teenage son, work schedules, and range of activities in their home city of Seattle, Washington.
However, in November 2019, Theresa experienced severe back pain, and biopsies showed that the cancer had returned. Throughout the next three years, she underwent a variety of treatments and participated in research trials.
“She fought really hard for three years,” said Manny. “Unfortunately, even with all the medicine out there and research that is currently available to us, there are not many targeted options for endometrial cancer. [These patients] are mostly being treated with a standard protocol.”
Theresa passed away in February 2022, and while Manny was devastated by the loss of his beloved wife just a few months shy of their 28th wedding anniversary, he has been more motivated than ever to advocate for cancer research and lifesaving treatments.
Manny is taking on an incredible feat to honor Theresa and his father, as well as many other cancer patients who are facing this battle every day. He will ride approximately 225 miles over three days from Bend, Oregon to Boise, Idaho as part of the Coast 2 Coast 4 Cancer ride. This ride is a 27-day cycling event by Bristol Myers Squibb employees that raises funds for the V Foundation for Cancer Research.
“I can’t control cancer, but one thing I can control is to move forward, be optimistic and educate patients and caregivers that there is hope through science and innovation,” said Manny. “No matter what type of cancer or what type of patient, they should have access to the best research and treatment.”
While Manny is an experienced cyclist with more than 20 years of riding under his belt, this event will challenge him in new ways. To start, the continuous time in the saddle over three days will be the longest he’s ever ridden, but it is not just the physical component that will take him to his limit. Theresa was Manny’s greatest champion through his training and he hoped she would be at the finish line to greet him in Boise.
Although his journey looks different than he anticipated without Theresa by his side, he continues to use her enduring spirit as motivation every day. For example, when he got two flat tires at mile 85 of a 100-mile ride, he channeled her strength to push him through.
“It’s hard to stop the momentum on a ride like that and you feel like it’s the end of the world, but it’s not,” said Manny. “What I’m going through today is nothing compared to what cancer patients face and that motivates me.”
While he has overcome many unexpected turns throughout this journey, one of the most surprising parts of participating in the Coast 2 Coast 4 Cancer ride for Manny was the overwhelming generosity he received from his friends, family and community to support the cause.
“I thought the most challenging part would be fundraising, but I was wrong. Between my own story and other people’s stories, a lot of people have been touched by cancer,” he said. “It’s not about me. The reason we ride is for all cancer patients.”
Manny continues to spread a message of hope, and champion organizations like the V Foundation, which helps accelerate cancer research so more people can enjoy that precious gift of time. “If my riding can give one more year or five more years to someone, it’s worth it. Even just one more birthday is an accomplishment.”
He knows first-hand how difficult it can be to see someone you love face this disease, and he is determined to be a part of the solution. “When I was a caregiver and husband, I felt like I was helpless,” said Manny. “But this is what I do best – riding – so I’ll do that. I’ll share my story and raise awareness for all cancer types. I’m 100% on board to achieve victory over cancer.”
To learn more about the Coast 2 Coast 4 Cancer ride, visit the website here.
Neuroblastoma, a childhood cancer that develops from a type of nerve cell called neural crest cells, is the third most common cancer affecting children. While current treatments have improved outcomes, they can cause long-term side effects and they don’t work for everyone: About 50% of high-risk patients don’t respond to the initial therapy or experience a recurrence.
To bring renewed hope for patients with hard-to-treat neuroblastomas, Judith G. Villablanca, MD, from the Children’s Hospital Los Angeles co-founded the New Approaches to Neuroblastoma Therapy (NANT) consortium, where she works in the NANT Operations Center that provides the infrastructure for development and conduct of clinical trials.
Villablanca and her colleagues designed the consortium as a conduit to fast-track promising new therapies. Specifically, NANT focuses on filling a key gap in the pipeline from laboratory discoveries to approved therapies, conducting early-phase clinical trials that test the safety of new approaches and provide preliminary data on how well they might work. If these early studies are successful, NANT partners with the Children’s Oncology Group — a national group that performs children’s cancer trials — to move potential treatments forward in larger clinical trials.
“NANT is the only clinical trials consortium focused on early phase trials of novel therapies for high-risk neuroblastoma patients with tumors that either didn’t respond well to therapy or that came back,” said Villablanca. “All our trials are based on compelling data from preclinical studies in neuroblastoma. Our unique repository of tumor samples and blood from patients treated on our trials also provides a valuable resource to researchers working in the lab to develop new therapies.”
A network poised for action
Though the NANT consortium receives funding from the National Institutes of Health, it relies on V Foundation grants for several key functions. Most importantly, V Foundation support funds the clinical investigators and infrastructure needed to quickly turn lab findings into a clinical trial. This funding also supports the researchers, nurses and data managers involved in enrolling patients into early phase trials, which can cost as much as $30,000 for a single patient. It also enables the consortium to collaborate with a diverse group of clinical sites located throughout the United States, Canada, Europe and Australia, giving more children the opportunity to participate in clinical trials.
“The V Foundation support helps NANT and its member sites to be constantly poised to rapidly translate new ideas from the bench to the bedside,” said Villablanca. “It means that when we find out something new in the lab, we can move ahead quickly without having to go through the process of securing all the funding for a particular drug study, finding clinical sites willing to participate, and then giving them time to get the staff and infrastructure necessary to conduct the clinical trial.”
V Foundation funding is also used to perform laboratory studies in parallel with every NANT clinical trial. These correlative studies help reveal the biological mechanisms behind new treatments being studied in early phase clinical trials, helping to inform the science to design future treatments and trials.
Improving clinical care
NANT’s clinical trials are already changing neuroblastoma therapy. For example, one trial showed that combining lorlatinib, an anaplastic lymphoma kinase (ALK) inhibitor, with chemotherapy is not only safe but has shown responses in patients with neuroblastoma. Based on these results, an ongoing Children’s Oncology Group phase 3 study of an earlier ALK inhibitor was changed to so that patients would receive lorlatinib instead. Researchers in Europe are also planning a new trial based on this data.
“We provided the extensive safety and response data needed to amend the phase 3 study,” said Villablanca. “This was only possible because of the detailed monitoring and correlative studies we’re able to perform and because our collaborating sites had all the necessary resources.”
NANT also helped to broaden the use of meta-iodobenzylguanidine (MIBG), a cutting-edge therapy that delivers targeted radiation to cancer cells in patients with neuroblastoma. I-131-MIBG is infused into the blood and enters neuroblastoma cells to deliver radiation to kill the cells. This intravenous medicine provides a way to deliver radiation more selectively to neuroblastoma cells with fewer side effects than an external radiation beam and can access small amounts of neuroblastoma cells at multiple sites in the body.
“When NANT started, only two cancer centers in the country offered MIBG therapy, and they manufactured it themselves,” said Villablanca. “Because of the multiple studies that NANT performed with MIBG, this treatment is now available across the country and is one of the most commonly used and effective single agents for neuroblastoma therapy.”
NANT researchers are now performing clinical studies that combine MIBG with other effective treatments to see which combinations work best. A recent NANT trial demonstrated that vorinostat, an HDAC inhibitor, improved responses to MIBG alone. NANT is now testing MIBG combined with immunotherapy. They are also studying a variety of immunotherapies and looking at how to incorporate these with other therapies to treat neuroblastoma patients at highest risk to further improve patient outcomes.
JJ Rothfuss is one of a kind. He’s one of 83 million children in the United States. He’s one of three million youth baseball players. And, he is one of 15,000 children who were diagnosed with cancer in 2021.
When asked to describe her oldest son, 8-year-old JJ, the first word that came to Amber Walker’s mind was ‘caring’.
“The number one thing is he is very caring,” Amber said. “He cares about people before himself. He’s wise beyond his years. He always was beyond his years, but I think this [his cancer battle] makes him more wise.”
Then, an anecdote about JJ’s pet bunny named Hoppus, but we’ll get to that part of the story later.
One Monday afternoon JJ wasn’t feeling well so his mom took him to the doctor’s office. She thought it might have been a cold, while the pediatrician suggested testing for mono. The results of the test were life-altering as JJ was diagnosed with leukemia – a common childhood cancer.
A whirlwind of activity followed the diagnosis. JJ was admitted to Golisano Children’s Hospital in his hometown of Rochester, N.Y., and started chemotherapy less than 48 hours later – an unfathomable change in such a short amount of time.
Once there, he underwent genetic testing and was diagnosed with the rarer children’s leukemia, acute myeloid leukemia. The treatment plan was four cycles of in-patient chemotherapy.
“It was five months pretty much straight in the hospital from April to September,” Amber said. “If his blood looked ok, he could come home very restricted from people. For the most part, it was 30 days in the hospital, a couple days at home and then go back for another 30 days.”
At Golisano, JJ fought through chemotherapy. He lost a lot of weight and muscle early in the process, but after adjusting to the treatments, he started eating more and building his strength.
SUPPORT AND CARING
With COVID-19 regulations, JJ’s only visitors early on were his parents, Amber Walker and Jamie Rothfuss. After a couple of months, the regulations changed, and he was able to see a couple of his grandparents as well. This helped brighten JJ’s spirits while also assisting his parents, as they were able to spend time at home and with their youngest son, Henry.
Throughout treatment, JJ built strong relationships with the nurses and caregivers who took care of him. He remained full of spirit and positive.
“He always says that he wants to go back and see nurses,” Amber said, with a smile on her face. “It’s a testament to how amazing the people on our floor were. He loves them. He has no fear of any of it because they did such a good job taking care of him.”
AMERICA’S (AND JJ’S) PASTIME
Before his diagnosis, JJ and his teammates were counting down the days to the 2021 baseball season. After missing the entire 2020 season due to the COVID-19 pandemic, it was going to be an important ‘catch-up’ season for all. JJ was only able to attend one practice before his diagnosis and admission to the hospital — no baseball season was possible.
While in the hospital, things to do between treatments were limited. But JJ made the best of it with the help of his family and the nurses.
The hospital had one playroom on his floor, which could be reserved for one hour per day due to pandemic regulations. The positive side of the regulation was that it meant that he was the only patient in the room, and he and his dad had space to practice.
JJ was adamant about keeping up his skills through his treatment. He and his dad, Jamie, worked hard on his skills and worked to keep his strength, playing catch in the playroom.
JJ inherited his love for baseball from his dad. They are both big fans of the Yankees, and Giancarlo Stanton is JJ’s favorite player. When Jamie was in the hospital, they were likely doing one of three things – practicing baseball in the playroom, playing a spiderman video game or watching baseball.
“For all the Sunday Night Baseball games that the Yankees were on we would put the window shade down and use that as a projector screen,” Jamie said. “We would darken the room and put it on the shade. That was really cool – it was like our own movie theatre.”
Although apart from the Little League team in 2021, JJ kept up with them. His team wore ribbons on the sleeves of their jerseys to honor him.
JJ saw the field once in the 2021 season. His oncologist cleared him to join his team in a game one afternoon during a chemotherapy break.
Even better, last month, JJ wrapped up the 2022 baseball season. He had a great support system that encouraged him throughout the season. Even some of his nurses at Golisano came to his games.
All of his hard work and dedication throughout treatment paid off, as he was able to compete at a higher level without skipping a beat and made the local travel ball team, the Penfield Crimson Pride. He played all across the diamond, showing his versatility and honing different skills. “It’s been a lot of work,” Jamie said. “He’s put in a lot of side work this summer. He loves it and is one of the hardest working kids, and it shows off too.”
Next comes hockey season, then the countdown for the 2023 baseball season will begin.
HOME SWEET HOME
After five months of chemotherapy treatments, JJ returned home. His scans are clear and he has returned to school, sports and playing with his younger brother Henry. He and his family celebrated with a trip to Disney World.
In December, three months after returning home from the hospital, the Rothfuss family was watching their beloved Syracuse Orange play Villanova in the Jimmy V Classic on ESPN. That is when they heard about the V Foundation for the first time, leading them to donate and share their story.
“You never realize how serious it is for the families that [cancer] impacts until you live it,” Jamie said. “That was one of the biggest things for us last year and why we wanted to donate and promote it to our friends and family too.”
JJ and his family look forward to celebrating his one-year anniversary of being in remission over Labor Day weekend. Each year comes with a smaller chance of relapsing.
Now at home, with things seemingly back to normal, JJ remains the caring and thoughtful person he was in the hospital.
Now we’ll get to the bunny story.
JJ had been asking his parents for a pet bunny for a while prior to his diagnosis and hospital stay. While he was in the hospital and preparing to come home, his parents consented. His parents told him he was going to be the main caregiver for the pet, and he agreed to it.
So, they went to online to a rescue organization’s website where there seemed to be tons of options for pet bunnies looking for homes. Many were young, energetic, fun bunnies, which most children would immediately choose to take home.
Instead, JJ picked a special bunny – it was older and only had one eye.
After being in the hospital for nearly five months through chemotherapy treatments and being cared for by incredible nurses, he picked the bunny he could care for himself.