Anchor To Windward

From an early age, I knew about the impact of pediatric cancer from my cousin's battle with nephroblastoma. I knew about the heartache and heartbreak it caused. I knew that it was underfunded and under prioritized. And I vowed to join the fight until every child was guaranteed a cure.

Jackson Panzarello has been my "anchor to windward" for pediatric cancer fundraising since he came into my life in the spring of 2011. He wrapped his arms around my heart and has never let go. No matter how rocky things seemed or how disinterested people were to my fundraising messages on a particular day, I could take refuge knowing that a 10-year-old kid in Southern California was fighting on.

Jackson was diagnosed with glioblastoma -- an aggressive brain cancer -- in February 2011. His parents sat in a Los Angeles medical office and listened to a neurosurgeon describe a tumor the size of a baseball on the left side of Jackson's brain. Surgeons could only remove 80 percent of the cancerous tumor. At a follow-up meeting, the doctor discussed the prognosis for glioblastoma and uttered two words that spawn a parent's worst nightmare: "It's terminal."

Nearly seven weeks of radiation soon followed. Jackson's mom, Lisa, kept friends and family updated online through the Fight On Jackson Facebook page. Within a few days, word spread far beyond their friends and family. Thousands of people from all walks of life began following her family's battle. Through all of the ups and downs, Lisa's amazing strength and grace filtered into every one of her Facebook status updates about Jackson.

"I hope his wisdom will help you, whenever you're in a time of
need. This boy is incredible. Thank God he delivered him to us." -- April 9, 2011

Homecoming

After spearheading several fundraising drives for The Jeff Gordon Children's Foundation, Katie Harty, associate director of the JGCF, asked me last year to lead a team in the CureSearch Walk for pediatric cancer research. We zeroed in on the Long Island CureSearch Walk, which was on the same weekend as my mom's birthday in June.

The phone call from my mom in New York came late at night after I left a message on an April afternoon. I told my mom that I'd be visiting for her birthday weekend. Then I asked if she could create a banner for the CureSearch Walk. Let's just say that her excitement for my visit began dimming when I detailed the complexity of the banner. Over the next few minutes, I explained the purpose of the banner and how I wanted it to look with three distinct panels. "But the leading panel has to be 'Fight On Jackson,'" I said. "And it has to be maroon and gold for the University of Southern California." We went over the dimensions, colors, and text sizes. Then she asked, "Who is Jackson?"

I told her about a boy who loved USC football, basketball, and racing. Then I paused and said, "He has brain cancer." It was the first time my eyes welled up with tears while talking about Jackson. It wouldn't be the last.

Like any concerned mother, she warned me about becoming too emotionally invested in Jackson's story. We knew the survival percentages for glioblastoma were lower than other forms of cancer having dealt with the disease years earlier when my cousin was diagnosed. Despite her warning, I felt like I needed to pour my heart and soul into it. Honestly, I don't know any other way.

I knew that I had to give as much of myself as I could for it to be successful. I had to go to the CureSearch Walk, meet the children, and speak to the families. Their stories of courage continuously amaze and inspire me.

When I look at the pediatric cancer fundraising totals over the past few years, I'm reminded about the value of teamwork. There are so many people who never made a donation to a pediatric cancer charity until I opened the door. That speaks volumes about the power of the Internet as a fundraising and communication tool. It brought Jackson to all of us. And I'm forever grateful for having followed his story.

Fight On

"Our Jax is in remission!!! We heard from the radiologist today and are beyond
thoughts as you can imagine! Thanks to you ALL for your thoughts, prayers, kind
words and blessings. You have made an amazing difference in our son's life (and ours)
that I am unable to put into words." -- July 19, 2011

An ordinary Tuesday in July became a cause for spontaneous celebration when Jackson's radiologist informed his family that the cancer was in remission. The following Saturday, I relied on Jackson's words a little more than usual. Against the advice of most rational people, I signed up for the Hemingway Days 5K sunset run in Key West. The heat index at 6 p.m. on that July afternoon was a balmy 110 degrees. I was using the run as a JGCF fundraiser where people would donate my run time. I couldn't back out when pediatric cancer funding was at stake.

After mistakenly bypassing the water station at the halfway point, I realized that finishing the run would be a major challenge in the intense summer heat. I started thinking about Jackson and whispered "Fight On" under my breath and kept going to the finish line. Within days, I bought a USC hat. I wear the hat for Jackson. It represents the "Fight On" message, the Spirit of Troy, and the courage to take on any challenge.

As summer turned to fall, Jackson returned to school. USC football and NASCAR were the focus of his weekends. Between doctor visits and follow-up exams, a sense of normalcy returned. His childhood returned. It seemed like that biggest problem at the time was Jackson's younger brother Willis who was dealing with a bully at school.

"I will never take for granted the beauty of noise in a morning routine of
our family!! I feel so blessed the boys are happy and healthier than we
experienced in 7 months, pinch me!! -- October 14, 2011

Like a menace waiting in the shadows, a winter MRI revealed one of the cancerous points had grown. Brain surgery in February brought a sigh of relief when there was no infection found. A few weeks later, the world shifted for him. Jackson complained of spinal pain in March and underwent an MRI.

The cancer had returned with vengeance in his brain stem and spine. Radiation treatments followed, but the exhausting combination of radiation and MRI exams was taking its toll. He was unable to eat and dropped down to 55 lbs. In mid-May, Lisa and Mark made their greatest decision out of love.

"Together with our Hospice Team, we have decided to forgo any further chemo and
not subject his little body to a 4-hour MRI that always leaves him sick. It's obvious
the cancer has come back with a vengeance and we have chosen to keep him home where
he is surrounded by love, peace and calm (of course his dogs too!) -- May 16, 2012

For Jackson

I read Lisa's update about hospice care while sitting in the airport for a flight to North Carolina. A few weeks earlier, I was invited to attend The Jeff Gordon Children's Foundation's donor luncheon. Originally, the main purpose of my trip was the luncheon with leading pediatric cancer experts and the Foundation's famous namesake. Waiting for the plane that day, I realized the underlying mission of the trip had been altered. It was for Jackson.

Everybody has an inner circle of people they trust such as close friends and family members who you rely on for favors. But when you're meeting someone for the first time and immediately ask for a favor, it can often cause a breach of etiquette. I had been in e-mail contact with Katie at the JGCF for the past few years, but we hadn't met before the luncheon. I mentioned the dilemma to my friend Gail as we headed to downtown Charlotte. "When you can impact someone's last days, that's not a favor... you have to pursue it," she said.

After meeting Katie, I told her about Jackson's story and asked if Jeff Gordon could record a personal message to him. I felt a lump building in my throat and briefly paused when I started explaining that Jackson's family made the painful decision to forgo further treatment in favor of hospice care. She immediately knew that time was of the essence. A few days later, Katie sent me the audio file of Jeff Gordon's "Fight On" message for Jackson. I put it into a video and sent it to his mom.

Following the luncheon, I went to a local FedEx Office store to have a "Fight On Jackson" banner created. I picked it up the next day and drove over to the Hendrick Motorsports complex. After visiting the JGCF office to go over the logistics for the Kick-It program in the fall, I walked over to the #24 shop with Rachelle Harty, event manager for the JGCF. I knew Jackson wouldn't be able to visit the shop or meet Jeff Gordon, but we could take him there through pictures with his banner.

Since it was a race week in Charlotte, there were more guests than a typical weekday in the lobby area of the shop. A race fan walked over and asked about Jackson when he saw us with the banner. As I explained the meaning of the banner and the battle that Jackson was facing, I saw the anguished look on the man's face. He paused and said, "Well, tell him to Fight On." At that moment, I had to bite my bottom lip.

Place In This World

When you believe in God, your heart and soul tells you that Jackson is in a far better place right now. But when you're 10 years old, the places you belong are on the basketball court with friends, going to Clippers games with your dad, doing your homework, and procrastinating past your bedtime. You always have a spot at the dinner table, your little brother idolizes you, and your parents are still the two coolest people on Earth.

Cancer is the worst thief in the world because it's not content with stealing everything you hold dear. It brings you to your knees with unbearable pain. It stole a lifetime of memories from Jackson. It robbed his family of watching him grow into the person he would have become. Cancer leaves an unopened box of haunting questions in its wake.

"This morning we all woke up, started planning his memorial, and constantly reminded
myself 'one foot in front of the other,' each day will be easier." -- June 26, 2012

In the days after Jackson's passing, I focused on putting one foot in front of the other and moving forward with a greater sense of purpose. Like thousands of others, I shed tears for his lost potential. Jackson impacted so many people during his 16-month battle. Imagine how many more he would have impacted in a lifetime. Just imagine.

I've often thought about the late basketball coach Jim Valvano, who passed away nearly 20 years ago after battling bone cancer. The inscription on his tombstone reads: "Take time every day to laugh, to think, to cry." I can't think of a better way to honor Jackson than by doing those things every day, while continuing the fight to raise needed funds for pediatric cancer research and treatment.

From The Heart

I regret that I never had a chance to meet Jackson in this life. Seeing him through pictures, video, and his mom's words, I know he would have made a difference in the world. Then again, for many families, he already has. In response to Lisa's updates, parents vowed to hug their children tighter, go for the extra ice cream cone, and acquiesce just a little on bedtime.

I know Jackson's message to me would be two simple words: "Fight On." Fight On through the pain and make every day count. Fight On if people seem disinterested about fundraising for a cure. Fight On to ensure that no family has to hear the words, "It's terminal," that his parents heard in a cold medical office in Los Angeles.

From the bottom of my broken heart, thank you Jackson for providing an everlasting anchor to windward, for clarifying my place in this world, and for teaching us all about love and mercy. I'll meet you at the top of the hill, Jax. Promise.

-- Larry



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