MANATEE -- It seems incredible that a toddler who will be 3 years old on July 26 could ever have, within her small body, a disease with a name like pre B infantile acute lymphoblastic leukemia with MLL gene rearrangement.
But Bradenton's Gianna "Gia" Lesselroth and her parents, Mike and Marissa Lesselroth, are dealing with this cancer, commonly known as ALL, every day.
Gia and her mom are currently living in a hospital room at Dana-Farber/Boston Children's Cancer and Blood Disorders Center, where Gia has gone to get a promising new treatment.
Gia has been accepted into this clinical trial because she relapsed in May after being cancer free, her mom and dad said.
During the trial, Gia's own cells will be genetically modified to be more active than usual and better at targeting tumors.
Mike and Marissa Lesselroth, perhaps unlike some parents, are open to sharing details of their daughter's struggle because they want to bring awareness to the state of pediatric cancer funding, which they believe is far too low.
"We want to get the message out there that child cancer affects everyone, white, black, Hispanic, Asian, rich, poor," Mike Lesselroth said a few days ago. "We need to come together and fight for a cure."
Before December 2012, when his daughter was diagnosed with leukemia, Mike Lesselroth had no knowledge of pediatric cancer federal funding. It was a world away. But now it is on his mind constantly, he said.
"Less than 4 percent of all cancer funding goes into pediatric funding," Lesselroth said. "That 4 percent equals $198 million, which is really nothing. As a comparison, the L.A. Dodger baseball team roster has 25 ballplayers and its total payroll is $277 million. It makes me mad. What the government is saying is that one baseball team is worth more than our children."
Although Mike Lesselroth has become an advocate for all children with cancer, a group of determined Bradenton and Palmetto residents, captivated by Gia's story, has become advocates for her specifically.
"Gia is a very vibrant, beautiful young girl who was diagnosed with leukemia when she was just 4 and a half months old," said Tammy Pearson who has helped organize a special fund-raising event for Gia.
Pearson and others know that Gia started getting pale at 4 months old, was constantly crying and in pain.
Gia's Bradenton pediatrician did not order a blood test, convinced the infant had colic, Mike Lesselroth said.
"A simple blood test was something we asked for and was never done," Gia's dad said.
Frustrated, Mike Lesselroth picked up his daughter on Dec. 17, 2012 and drove her to All-Children's Hospital in St. Petersburg where they immediately ordered a blood test.
"A normal white blood count is five to 10 thousand and anything over 50 thousand is usually the presence of cancer," Mike Lesselroth said. "Gia's was a half million."
A doctor came out after taking the test and told Lesselroth, "You need to call your wife and have her get here immediately," Lesselroth recalls.
"They didn't think Gia would make it through the night," Lesselroth said.
But Gia, who is called Gigi by her dad, did hang on. She has now hung on two more years.
"No one knows why she lived," Gia's dad said. "The doctors call her a miracle baby."
Pearson's event, called, "Get Fit For Gia," is scheduled 9:30-4 p.m. Saturday, June 27 at CrossFit MudFish, 909 10th St. W., Palmetto.
The event, which is enthusiastically supported by the gym's owners, Randall and Carrie Fowler, will feature a Burpee-A-Thon and Silent Auction, Pearson said.
"You bring the dollars and we will do the burpees," Pearson said, speaking of her fellow CrossFit devotees.
Pearson's goal is to raise $5,000 by having members of the CrossFit gym do one burpee for one dollar donated.
A burpee is a wicked hard eight- or nine-phase exercise that involves a squat, a plank, a push up, back to squat then jump up to standing position, Pearson said.
"No one likes burpees," Pearson said. "It's a full body workout. The 5,000 figure is daunting. It will take dedication. It uses every muscle. We think we will have members do 10 or 15 at a time, then take a break."
There is a Facebook page for Gia at www.facebook.com/PrayersFor Gianna.
There will also be a fund raiser held at Evies Tavern and Grill, 4735 Bee Ridge Road, Sarasota, on July 11, Marissa Lesselroth said.
Gia's own cells put to work
The cancer Gia has -- B-cell acute lymphoblastic leukemia -- is the most common childhood cancer, Dr. Lewis Silverman, clinical director of the hematologic malignancy center at Dana-Farber/Boston Children's Cancer and Blood Disorders Center, stated in an article posted on the Boston Children's Hospital website.
While 95 percent or more of newly-diagnosed children with Gia's cancer get into remission with standard therapy, between 10 and 15 percent of those children, like Gia, ultimately relapse within five years of being diagnosed, Silverman said.
But Silverman and his colleagues have come up with an idea for attacking the cancer in these relapsed children.
The treatment they are studying in clinical trials is called "Chimeric Antigen Receptor T-cell Therapy,"
"This is Gia's best option for any survival," Mike Lesselroth said last week.
"We're educating and energizing T-cells to go after leukemia cells," said Dr. David Williams, a gene therapy specialist and chief of hematology/oncology and director of clinical and translational research at Boston Children's Hospital and associate chair of pediatric oncology at Dana-Farber Cancer Institute.
"It's a very focused approach," he stated in the same website article as Silverman.
Once the T-cells grow and start producing chimeric antigen receptors on their surface, they're infused back into the patient, Silverman said.
Gia first has to undergo 32 days of chemotherapy in Boston to get her body ready to start the year-long T-cell clinical trial, her father said.
During this time, Gia and her mom will be living in a room at Dana-Farber/Boston Children's Hospital.
Gia and mom are making the best of it
Living in a hospital room is not glamorous, Marissa Lesselroth said last week.
"Hearing other kids cry all night long, hearing the beeping from the IV pole, not having any privacy, constant people in and out of the room, having no space, a constant worry of infection, not having our family all sleeping under one roof. The list could go on and on," Gia's mom said. "We try to stay positive especially for Gia. I keep the window shades open as much as possible."
The family was lucky to have a local Boston foundation called Luck 2 Tuck come in and 'deck Gia's room out,'" Marissa Lesselroth said.
"They brought in all kinds of 'Frozen' décor to brighten up her room," Marissa Lesselroth said. "We have cards from Team Gia supporters from all over and we have tried to make the best of it. The hospital even let us paint the windows to say Team Gia and 'Never Give Up.' Its pretty awesome, I have to admit,"
Mother and daughter miss dad and Gia's brother Logan, 5. "Gianna likes all the typical toddler girl stuff, Frozen, Hello Kitty, Bubble guppies, Princess stuff, Dora and one of her all time favorites is Diego," her mom said.
"Gianna's favorite person in the world is her big brother, Logan, and anything that he likes she is sure to want and like. She is known to swipe his toys.
"In fact, when Logan started school, Gianna had three hours of playing with everything he tried to hide from her. She thought it was great.
"One of their favorite things to do together is ride in his Power Wheels police car to the park. She loves being outside and loves to swing on the swings. When she is feeling good she is always on the go. Before this relapse it was hard to keep up with her most days."
In one of their favorite games, Gianna makes Logan her baby and pushes him around the house in a stroller, feeds him a bottle and puts him to bed, Marissa Lesselroth said.
"She is such a good mommy," Lesselroth said.
Marissa calls Gianna, "My spicy child."
"She is a girl that knows what she wants," Lesselroth said. "She is not afraid to tell anyone how she is feeling. She is extremely smart and nothing gets past her. When she wants something she is determined to get it. She really is the boss of the house."
Gia's mom remembers special moments as they pass the time together. "There are so many all-time mother/daughter favorite moments," Lesselroth said. "The first years of life are huge for any child and so every time she hit a milestone it felt much more important to me because I knew how hard it was for her to make it there.
"I remember she was not sitting up on her own and we were working with physical therapy to help her sit up. One morning I walked in her room and there she was in her crib sitting up like a big girl and she looked so proud, I was so proud. It was definitely a special morning.
"Another special moment was the day I could fit a clip in her hair after it grew back from the first time it fell out."
Gia has already taught those around her life lessons, her mother said.
"Gianna has taught us giving up is not an option," Marissa Lesselroth said. "She has been a fighter her whole life. It's part of her spicy personality. She is very strong-minded. She has fought her whole way through this battle. All of her nurses and doctors adore her because she does not make anything easy on them. They know she is in charge and they ask her if they can look in her mouth or take her blood pressure.
"I don't think she really understands she is sick. Unfortunately, this is all she has ever known so I think she thinks this is how life is. It's sad really. She only had a few months of life to feel good and now she is back in the hospital feeling cruddy again."
Richard Dymond, Herald reporter, can be reached at 941-745-7072 or contact him via Twitter@RichardDymond.