By Maureen Gilmer, IU Health senior writer, email@example.com
At just 3 years old, Leah Faith Soner has spent most of her life fighting a deadly disease.
She doesn’t know any different, really. Hospitals, blood transfusions, chemotherapy, nausea, hair loss. It’s all been part of her story since she was diagnosed with infantile acute lymphoblastic leukemia (ALL) at 7 months old.
That’s a rough diagnosis, as her mom, Tanya Valentin, found out. While ALL is the most common form of childhood cancer, infantile ALL is a different ballgame. It’s rare, can be much more acute and is harder to get into remission.
Leah has already relapsed twice.
“You would think that getting a cancer diagnosis in your child is your worst nightmare, and I thought that there was nothing as bad as getting that news. But I was wrong,” Valentin said. “The news that your child has relapsed is 10 to 20 times worse because you know that with each relapse, the prognosis worsens, and it’s heartbreaking.”
Yet, as Leah’s middle name implies, faith guides this family.
“NEVER LOST HER SMILE”
“She strengthens me,” said Valentin, a nurse herself. “I describe Leah as an 80-year-old woman trapped in a toddler’s body. She’s wise beyond her years. I have honestly seen the Lord’s hand over my child and give him honor and glory for it. Yes, she’s been seriously ill, but she has never lost her smile.”
Leah was diagnosed as a baby in Florida, where treatment began. Her mom, a native of Puerto Rico who had fled to Florida after Hurricane Maria, then moved with her daughter to Kentucky to be closer to family.
Her home hospital is Norton Children's in Louisville, but Leah was referred to Riley Hospital for Children in Indianapolis for specialized CAR T-cell therapy in a trial through CureWorks, a collaborative effort among a handful of top-tier pediatric hospitals, including Riley, to offer better outcomes for kids with the most resistant forms of cancer.
The idea is to wrestle her disease back into remission to prepare her for a stem cell transplant to eradicate the cancer.
Dr. Jodi Skiles, pediatric oncologist and director of stem cell transplant at Riley, has been overseeing Leah’s treatment here, which included CAR T-cell infusion just over a month ago.
“When Leah came to us, she had such significant disease burden that she was on really high doses of narcotics to control her bone pain,” Dr. Skiles said. “Just attempting to move her, she would just cry out in pain.”
But within days of getting her CAR T cells, her disease was coming back under control and Leah’s personality began to shine through.
BACK IN REMISSION
“It’s been really fun to watch her come out of her shell, to go from a kid that literally could not move to a kid that’s active and happy and playing in the park and running and chasing her dog,” Dr. Skiles said. “It’s been lovely to see her come alive.”
The John W. Anderson Foundation, an Indiana-based nonprofit whose work includes supporting scientific and medical research to alleviate suffering particularly in children, has been paying for T-cell collection, the physician explained. The cost is typically $25,000 per patient.
Leah is currently in remission once again, and the plan is for her to go to transplant as a definitive curative therapy, Dr. Skiles said.
Being able to give Leah a therapy that can safely and successfully bridge her to transplant is a big deal, she added. Having the CureWorks study available and being the only site in the Midwest offering it made it easier for Leah to get access to the therapy without having to be too far from home.
“Overall, she has done really well, is thriving and looks amazing now,” Dr. Skiles said.
But another relapse could be waiting, which is why transplant in the next two months is critical, she said.
“Leah looks so good now, but if she switches to the myeloid form of leukemia, we may never be able to get her back into remission, and CAR T-cells are not an option for that type of leukemia,” she said.
“This is our window to go when she looks well and her disease is in remission. If we don’t take that swing right now, we may never get the chance to swing again.”
BE THE MATCH
The family returned to Kentucky just before the July 4th holiday. For Valentin, it will be good to be closer to family while they determine when and where Leah will undergo the stem cell transplant.
While they wait, they hope and pray for a match in the Be the Match donor registry. Valentin is a half-match for her daughter, who is half Puerto Rican and half Dominican. The chances of finding a complete match are slim, but half-matches can be successful.
Another option is a cord blood transplant. Umbilical cord blood is taken from a healthy baby after the cord to the placenta is clamped. The blood that is in that portion of the cord has stem cells in it, Dr. Skiles explained. Often, mothers will donate cord blood to a public cord blood bank.
Meanwhile, Valentin, her sister and others have held Be the Match drives in Florida, Kentucky and Puerto Rico to boost Leah’s chances of finding a better match, but Valentin is ready to be the donor if that is the best option.
She describes her daughter as “full of life, very energetic, happy, smart and spontaneous.” She loves Dora, baby-signing DVDs, books and the Bible.
And Leah adores her little Labradoodle, Toby, a gift from a breeder in Puerto Rico. The two are inseparable, Valentin said.
She is grateful to everyone who has been a part of her daughter’s story, who has registered on her behalf, shared her story, prayed for her or helped in any way.
“Please remember if it’s not for Leah, it’s for someone else in need. I didn’t know about Be the Match until I needed it, but it’s a blessing how easy you can actually save a life.”
Find out more at https://bethematch.org.