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READ MOREPublished on September 8, 2023 in Fundraising, Stories
When Jesse C. and his older sister LaTosha C. decided to host a charity powerlifting meet in memory of her daughter, who passed away nearly 20 years prior from a brain tumor, Jesse knew he wanted to hit his 700-lb. deadlift goal at that meet.
On the day of the meet, the energy in the Raw Iron Pittsburg room was palpable as fellow participants yelled with encouragement when Jesse stepped up to the barbells for the final lift of the Lifting for Lavi charity meet. Jesse grabbed the 700-lb. barbell from the ground and slowly stood up. The room erupted when his shoulders moved back and his legs locked. He had hit his goal.
“It was about so much more than the weight,” LaTosha said. “He did it for his niece, Lavi, and he just broke down because she was his baby, too. He helped me raise all my kids as a single mom. I don’t think there was a dry eye in the place. It was an epic moment.”
The Lifting for Lavi powerlifting event commemorated the 20th anniversary of Lavi’s passing in 2003, with proceeds benefiting the National Brain Tumor Society.
Alavia, whom everyone called Lavi, was born on April 3, 2000, and began walking at just nine months old.
“She was just the joy of my life,” her mother LaTosha shared. “She loved people. When we went to the grocery store, she would reach for people and just smile.”
A month later, LaTosha took Lavi to the emergency room because she stopped drinking her bottles and couldn’t keep anything down. The health care team diagnosed Lavi with an ear infection and prescribed antibiotics. Unfortunately, Lavi continued to fuss and still struggled to keep her bottle down.
“I would try to turn her head, and she would scream bloody murder,” LaTosha explained. “They did all kinds of tests, and they couldn’t figure it out. They finally just put her in the hospital because she was so dehydrated. She went from 23 pounds to 19 pounds in a couple of days.”
Out of the blue, LaTosha’s grandmother called her with the premonition that something was wrong inside Lavi’s head. Her grandmother had accurately predicted things before, so LaTosha asked the team to check her head. Given that nothing had turned up yet, the on-call doctor agreed to schedule an X-ray.
“I knew that something was terribly wrong when they did the X-ray and she didn’t move, because babies move,” LaTosha said. “While waiting for results, I could feel her body go stiff on top of me in the dark. She was having seizures and convulsing, so I pushed the button, and the nurses and doctors rushed in. When they finally got her under control, the doctor turned around and showed me an X-ray of a tumor almost the size of a baseball in my 10-month-old baby’s head.”
Lavi was airlifted to the children’s hospital in Dallas to release the pressure on her brain. The first surgery was eight hours long because the tumor was so large. After they learned the tumor was ependymoma, Lavi began chemo and radiation. During the six weeks of radiation, LaTosha and Lavi lived in the Ronald McDonald House affiliated with the hospital.
“I didn’t even see the light of day for months at a time,” LaTosha said. “I was just on autopilot. It’s really hard to be in a hospital full of sick kids all the time. And in the Ronald McDonald House, you’re always with sick kids. You’re not just dealing with your child being sick, you’re seeing other children being sick, and you’re hearing in the middle of the night a mother down the hall crying out because her child didn’t make it. It’s very mentally taxing.”
LaTosha served as the primary caregiver for her daughter as well as for her mother, who had stage 3 colon cancer.
“Lavi’s tumor was benign, not malignant, which ironically made the tumor harder to treat because the chemo treatments are made to kill cancer cells,” LaTosha said. “Every time they took it out, it would grow back in a different spot in her brain. She had four different brain surgeries. The last tumor grew in her brainstem, and I decided to let her go naturally — quality of life versus quantity — because she would have been in a vegetative state.”
Lavi passed away on March 21, 2003, just 13 days before what would have been her third birthday.
A fluke encounter at the YMCA in 2013 ultimately led LaTosha to powerlifting, which consists of three types of lifts — squat, bench, and deadlift. Ten years later, at 43 years old, LaTosha goes by the “Deadlift Diva” and can now deadlift over 500 pounds. Today, she holds six world records, nine national records, and over 15 state records.
A friend in the powerlifting community encouraged LaTosha to hold a charity meet in Lavi’s name, so LaTosha got to work with the help of her brother Jesse. The pair were overjoyed when they had to close registration because the demand was so high. The duo set a goal to raise $3,000 for NBTS, and they ultimately raised $4,700 through the generosity of sponsors and attendees.
“It was beautiful to see the community come together — we had standing room only there were so many people there,” LaTosha said. “I was just not expecting that. I poured my heart and soul into that community, and they reciprocated it for my baby and something I love. I asked them how they would feel about making it an annual event, and I got a standing ovation. It meant the world to me because I’ve never been really able to honor her the way I wanted to because I have just been growing myself up by my bootstraps and trying to be a mom. It’s been a wonderful experience to be a part of the National Brain Tumor Society.”
NBTS recognized LaTosha’s hard work by presenting her with the Trailblazer Award during National Volunteer Week. This award is given to a community event organizer who has demonstrated a strong commitment to the NBTS mission through their newer yet fierce event support. The recipient of this award has displayed a positive can-do attitude and an eagerness to continue to build on the foundation of the positive impact they’ve created.
“I wanted to bring awareness not just to my daughter but to the disease in general because a lot of people don’t know about it because it’s pretty rare,” LaTosha explained. “One child lost to this disease is too many. It’s unnatural for a parent to have to bury their child.”
Commemorate Childhood Cancer Awareness Month this September by taking an activity you love, as LaTosha did with powerlifting, and creating a fundraiser to raise funds that will drive new treatments and build the power of the pediatric brain tumor community. Together, we will conquer and cure brain tumors — once and for all.
TAGGED WITH: brain tumor, Ependymoma, community fundraising