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Arnav is battling osteosarcoma, the most common form of childhood bone cancer.


by Adam Paris, ALSF  

Editor’s note: Previously, we shared Part 1 of Arnav’s story. If you missed that installment, read it here.

“Dad, so you’re telling me I beat half the nation’s best on a half-broken leg.” 

Arnav was riding home from the doctor after being diagnosed with osteosarcoma, the most common type of childhood bone cancer. The cancer was in his left leg. 

Arnav, as always, had what his father, Nitin, calls “relentless positivity.” 

His parents, however, struggled with their new normal. 

“Having to learn that he had cancer and that his leg would need surgery, just shattered my wife and me,” said Nitin. “We couldn’t put ourselves together.” 

Even with an unknown future looming, Arnav kept his relentless positivity. His parents began searching for an osteosarcoma specialist in the area, boiling down their treatment options to three hospitals. They chose Children's Hospital of Philadelphia (CHOP) and began preparations for Arnav's treatment, which began with pre-surgery chemotherapy.

Much to Arnav’s relief, the consulting surgeons told him that his leg wouldn’t need to be amputated. They told his family that removing the part of his leg affected by the cancer would suffice, but the particulars of the surgery would depend on Arnav’s future goals.

The surgeons devised two plans, one where he would receive an artificial knee that would recover quickly but restrict his athletic endeavors or he could embark on a year-and-a-half recovery time with a surgery that entailed reconstructing his knee. The second one meant that Arnav would be able to bike again, so his response was obvious.

“His aspirations were definitely to get back on the bike,” Nitin said. “We know he wants to get back on the cycle, we know he wants to compete and we’re fully supportive of whatever he wants to do.”

Arnav's surgery in November 2016 entailed reconstructing the leg with a donor bone, attaching fibula from the right leg, strengthening the entire leg by embedding steel rods, reconstructing the knee and then all stitched together through microvascular surgery, a type of surgery used to reattach the smallest blood vessels, as the final step of a 16-hour process.

Arnav’s pursuit of cycling again continues to pedal him forward and he uses that finish line as an inspirational endpoint for his journey.

“It’s my passion and it’s gotten me through this,” Arnav said. “Just knowing that I can race again after this.”

Arnav completed his final chemotherapy session in late April, which means the reconstructed bone will finally begin to heal. Throughout this entire process, there’s been an outpouring of support from his community, family and friends to help keep him going. 

“There were so many people we don’t know who have come and said, ‘Whatever you need, we want to help,’ and they have helped. It is amazing,” said Nitin. “Having a whole village around you is very important because you can’t do it by yourself.”

Even stronger than the rallying community is the bond between Arnav and his twin brother, Dhruv.  Already connected by their cycling commitment, this entire experience has brought the two even closer.

“Dhruv has not even once said, ‘I have this party to go to,’ or ‘I have this fun event with my friends,’ he has canceled all of those in a heartbeat and said I want to be with my brother,” said Nitin. 

“I think our bond really got stronger because he was really the only person I could play with,” said Arnav. “I think that just made our bond thousands of times better and it just grew tremendously.” 

The family’s resolve remains powered by Arnav’s courage and relentless positivity. That’s been the biggest takeaway for Nitin, who urges other families to maintain a positive outlook to help them through difficult times no matter what. Arnav knows that sharing his story of hope through Alex’s Lemonade Stand Foundation will help plenty others facing the same challenges as him.

“I think that getting the story out there so more people will know that there’s still hope and there’s a light at the end, that’s awesome,” said Arnav.

Going forward, Arnav’s dream is getting back on that bike, something he hopes to do by December. Beyond that point, he remains unsure, even if his parents may be pushing him towards becoming an osteosarcoma surgeon. 

“Who would be more empathetic to their patient than he could be?” Nitin said.

Missed the beginning of Arnav’s story? Read Part 1 here.

This September, Arnav and his family will join Alex's Million Mile, and help us go 1 million miles and raise $1 million for childhood cancer research! You can join, too! Get the details here.

 

 

 

 

 

 

Categories: 
Alex's Million Mile
Osteosarcoma claimed the leg of this young cyclist. Read about his story.

 

 

by Adam Paris, ALSF

“No, I want to compete,” Arnav said as he picked his bike up off the ground.

Despite having just fallen off his cycle and shattered his helmet, Arnav was insistent on finishing the cycling competition. Race officials cautioned him against continuing, but there was no stopping the persistent teen. Off he went, finishing 9th in the race despite his early tumble. 

That same will to barrel forward, no matter the obstacle, would drive Arnav during a far more grueling fight of his life against childhood cancer. 

At the age of 14, Arnav was diagnosed with osteosarcoma, the disease that would cost him the ability to ride. It’s the most common form of childhood bone cancer, although there are only 400 known cases of osteosarcoma in the United States.  The disease develops from the cells that help create growing bones and happens more frequently in teenage boys in the midst of a growth spurt. For Arnav, a National Honor Society member and winner of the Pennsylvania Academy of Junior Science competition, the diagnosis took away one of his passions in life. 

You can’t ride a bike if you don't have a working leg. 

The Wheels Start Turning
Biking was an integral part of Arnav’s life since he was 8. Ever since his father picked up the sport to support a friend with multiple sclerosis, Arnav and his twin brother Dhruv were enamored with the sport. Later, their science teacher and family friend noticed the duo cycling and suggested that Arnav and Dhruv train at the local outdoor professional cycling track. The obsession was instantaneous and their passion and brotherly bond only grew.

“It made us both more competitive and want to get better than the other; so we worked harder and harder,” Arnav said. “I think it’s good to have some friendly competition around.”

Arnav and his brother competed at the local, regional and even national levels. Arnav’s favorite competition is endurance based sprint races. He won a state competition and beat out cyclists in age groups older than him. Even after riding in a Northeast regional race that encompasses 13 states, Arnav and Dhruv weren't satisfied with accolades on a regional level. Both of the brothers eyed a place in the national competition and signed up for the USA Cycling Elite & Junior Track National Championships. 

A week or so before the Championships in late July 2016, Arnav started mentioning his leg bothered him. The sore calf and lower leg led to a noticeable limp at points, but that seemed typical for an athlete whose training regimen required four to six hours of intense training per day, six days a week. The typical rest, ice, compress and elevate (R.I.C.E.) tactic proved ineffective at curbing the pain. Despite the injuries, Arnav persisted and went to Nationals brimming with optimism. On the day of the competition, more than 50 athletes participated in his age group starting with the initial heats. From there, Arnav emerged to finish a respectable 18th place and his brother wound up 10th overall. Despite the joy at his accomplishment, Arnav’s pain didn’t disappear.

First, a masseuse massaged the aching limb and suggested they see a doctor. A week later, Arnav saw his general physician, who quickly referred them to a sports medicine specialist. Upon looking at his leg, the doctor said X-rays and an MRI would be necessary. Within days, they discovered the osteosarcoma in Arnav’s left leg. The disease would require extensive surgery on his leg. 

Arnav was forced to pump the brakes on his cycling career and face his cancer diagnosis with the same relentless spirit he gave to cycling.

Want to read more of Arnav's story? Read part 2 here.

This September, Arnav and his family will join Alex's Million Mile, and help us go 1 million miles and raise $1 million for childhood cancer research! You can join, too! Get the details here.

 

 

 

 

 

Categories: 
Alex's Million Mile
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

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