SANTA ANA, Calif. (KABC) -- At just 9 years old, Matthew Morales knows a lot about needles, hospitals and taking medication.
"The most thing I hate about medicine is the liquid one... it tastes like vomit," said Matthew, seated on a table in a conference room at the Leukemia & Lymphoma Society's Santa Ana office.
Matthew was 4 years old when he was diagnosed with acute lymphoblastic leukemia, the most common form of childhood cancer. Despite a high cure rate in children, that's not the case for Matthew. He has a rare form of ALL due to a gene mutation known as the Philadelphia chromosome.
"That gene will continuously kick out cells that are basically deformed, and that creates the leukemia. So his type is only 2% of all leukemias for children," said Brandy Morales, Matthew's mom.
Matthew was treated for three years before he reached remission, but it was short-lived. He relapsed three months later and needed a bone marrow transplant, which he received thanks to his brother who was his match. Today, Matthew is in controlled remission with the help of a gene inhibitor developed through research funded by the Leukemia & Lymphoma Society.
"He takes the gene inhibitor twice a day, morning and night, and what that does is control the gene from kicking out the bad cells," said Morales
Matthew is sharing his story as "Boy of the Year" for Leukemia & Lymphoma Society (LLS). He was chosen by the nonprofit as part of its annual "Man or Woman of the Year" competition. Candidates and their teams representing the Orange County/Inland Empire chapter are raising money for LLS to help fund patient services and critical blood cancer research.
This year, the Leukemia & Lymphoma Society launched a $50 million childhood cancer initiative aimed at research into safer life-saving therapies.
"We are going to increase our research funding, we are going to enhance our patient access, we are going to support the government STAR Act and advocate in Washington, and finally we have a clinical trial planned for pediatrics as well," said Dr. Lee Greenberger, chief scientific officer for the Leukemia & Lymphoma Society.
Blood cancer in children makes up 40% of all pediatric cancers, but in the past 30 years, only four oncology drugs have been approved for first-use in children.
"The new drugs being discovered tend to be for adults. They go into adults first. Getting those into children and integrated into the therapy for children is a major undertaking," Greenberger said.
Matthew's cancer is considered incurable. Up until a few short years ago, it would not have been deemed survivable without the gene inhibitor he is currently taking.
"What the (LLS) have done for blood cancers, particularly with Matthew's type with the Ph+, has been amazing," said Morales. "If he had relapsed quickly and not given that three years difference, he would not have had a second gene inhibitor to opt to."
But the treatment is not long term. His growth has been stunted by the therapy and he will need to stop taking it so he can grow a bit more, but that comes with the risk of his cancer coming back.
When asked about his cancer, Matthew said it scared him. Even at 9 years old, he know his disease could mean death, but he remains hopeful that research will one day make inroads into his particular gene mutation. Right now, the cancer research is geared towards precision medicine aimed at the individual and immunotherapies in which the patient's own immune system is engineered to attack cancer cells.
"The progress to date tells in the years ahead. In 10 years you are going to see a different type of therapy for these kids," said Greenberger.
If you'd like to donate to the "Man/Woman of the Year" OC/IE campaign, you can find a candidate running by clicking on this link.
The title "Man or Woman of the Year" is awarded to the candidate whose team raises the most funds during the competition. The competition ends May 18 at noon PT.
Leukemia & Lymphoma Society take on childhood cancer with $50 million initiative