Korbyn Martinez has the soul of an adventurer.
At a little less than 2 years old, he lugs a small, but important, backpack around and explores as much of the world as he can.
He can make the sound of dozens of animals. He loves to pretend his arm is an elephant trunk as he makes a loud trumpeting sound. Considered “rough and tumble” by his parents, he loves being active and playing ball.
“You’d never know he has what he has,” said Hillary Martinez, Korbyn’s mother and a 2006 UCF alumna. The family currently lives in Oviedo.
Korbyn has a cancer of the blood and bone marrow, known acute lymphocytic leukemia or ALL. His small red backpack is filled with chemotherapy drugs, which he receives in a constant, 24-hour stream. Everything he’s learned about animals has been through a screen; he’s never been able to go to a zoo.
This is the most common type of cancer for those younger than 15, said Dr. Dennis Borrero Ramos, a pediatric oncologist trained in pediatric hematology and bone marrow transplants at Florida Hospital. According to the American Cancer Society, ALL starts from early forms of lymphocytes in the bone marrow. Lymphocytes cells protect the body from infection and are a major part of the immune system.
“Any of the blood-forming cells from the bone marrow can turn into a leukemia cell,” according to the American Cancer Society. “Once this change takes place, the leukemia cells no longer mature in a normal way. Leukemia cells might reproduce quickly, and not die when they should. These cells build up in the bone marrow, crowding out normal cells … where they can keep other cells in the body from doing their jobs.”
It started out small. When Korbyn was 3 months old, his mother and father, Hillary and Bryce Martinez, who are in their 30s, had enrolled him in daycare so they could both get back to work. Korbyn started getting ear infections like most of the kids, but something was different.
By July 2015, Korbyn had suffered more than three ear infections and was on antibiotics for another. Within a week of treatment, he was back in bed with a fever. Shuffling a feverish Korbyn between his bed and their pediatrician’s office became just another part of life for the Martinez family; he would have a fever, then get medicine, then the fever would spike, so they’d get another medicine, and so on and so forth. The family brought in another pediatrician who theorized that Korbyn had some kind of serious infection based on the swelling of his spleen and liver.
“He thought [Korbyn] had a virus like mononucleosis because [Korbyn] kept getting ear infections and the antibiotics weren’t working,” Hillary Martinez said. “So at that time, he had taken blood from Korbyn to run some more tests, and he wanted us to come to Florida Hospital to get ultrasounds done on his abdomen to check the size and see if they really were enlarged.”
The Martinez family checked into the hospital on Friday, July 17, 2015. After doctors saw the test results, Korbyn was admitted to the hospital that same day. The results showed that in addition to Korbyn’s enlarged spleen and liver, he also had a very high lymphocyte and white blood cell count.
That Sunday Korbyn was diagnosed with ALL. On Monday he had a port installed, and by Tuesday he had started chemotherapy.
“There was like no time to grieve … we had to act. We had to be proactive and just do what they were telling us, pretty much,” Hillary Martinez said.
The family stayed in the hospital for 40 days and 41 nights, Hillary Martinez said. She and her husband used all their vacation time during this period to the point where other employees began donating their time off to the family.
Korbyn received chemotherapy for nine months, three months for each step of chemotherapy including induction, consolidation and maintenance. According to the National Cancer Institute, induction is the first phase of treatment that kills leukemia cells in the blood and bone marrow. Consolidation is the second phase of treatment, started after remission, meant to kill any remaining leukemia cells in the body that could cause a relapse. Maintenance is the last phase of treatment, and it also aims to kill any remaining leukemia cells, only at a lower dosage than the previous phases.
Borrero Ramos said that significant improvements have been made in the survival rates of children and adolescents with cancer.
“For example, between 1975 and 2010, childhood cancer mortality decreased by more than 50 percent,” he said. “For acute lymphoblastic leukemia, the five-year survival rate has increased over the same time from 60 percent to approximately 90 percent for children younger than 15 years.”
Korbyn had been cancer-free since day 29 of his chemotherapy, Hillary Martinez said.
“We never anticipated he would relapse,” Hillary Martinez said. “All the doctors talked about how well he was doing, that his prognosis was really good, that his response to the chemotherapy was great — it was working. To hear that he had positive cells, it was the first time my husband and I were able to grieve.”
Martinez said doctors were unsure about continuing chemotherapy due to Korbyn’s age and the fact that only five leukemic cells had been found in his spinal fluid.
“Once you relapse, you pretty much have to start at day one with chemotherapy,” Hillary Martinez said. “Do induction again, do consolidation again, do maintenance again.”
Chemotherapy doesn’t know which cells are bad, it just kills everything including your own immune system. The family can’t wear shoes in the house, they can’t spend time with other children who have had vaccines, they can’t come home from work and immediately hug him without putting him in danger.
“We all technically have leukemia,” Hillary Martinez said. “Our immune system fights it off every day, cell by cell. It’s almost like his immune system doesn’t know how to fight off the leukemia so they keep killing it off and that’s why the chemotherapy works … it’s like a bomb that kills everything at once.”
Doctors found a chemical study a month after Korbyn relapsed that showed a treatment plan of three blocks of chemotherapy and then a bone marrow transplant to replace the immune system. Borrero Ramos said the new regimen is a constant, 24-hour infusion for “many days” which requires Korbyn to carry a pump with him at all times.
Once Korbyn’s grandmother, Cindy Ridgeway, 57, heard about Korbyn needing a bone marrow transplant, she began organizing Be The Match events. Be The Match is an organization operated by the National Marrow Donor Program that works to create an international bone marrow donor registry.
Bone marrow donation doesn’t have anything to do with blood type, Hillary Martinez explained, it has to do with DNA.
“There are 14 potential [DNA] matches,” she said. “They are looking for at least 10 out of the 14 in order for Korbyn to be able to use that person’s bone marrow.”
Hillary and Bryce Martinez are both five out of 10 matches, as they are his biological parents, but the low DNA match increases the risk of transplant rejection.
Borrero Ramos said that once a match is found, he does not expect there to be any major complications.
“I think this new treatment is going to cure him and he will be a good and important member of our society,” he said. “I know that God has a purpose with him.”
Korbyn’s family plans to take him to the Brevard Zoo as soon as they can.
“He’s just such a special boy,” Bryce Martinez said. “It’s been tough not to show him off to anybody, just how special his is because he’s a bubble boy.”
It’s been a long road, Bryce Martinez said, we just hope this is the right path for him.
Help Baby Korbyn
There is a Be The Match event on July 20 from 11 a.m. to 4 p.m. outside the Student Union on UCF’s main campus. For those who want to donate but cannot physically attend the events, Be The Match will allow you to register as a donor from the comfort of your home.
This story was originally published on July 6, 2016.
Alissa Smith is the News Editor for the Central Florida Future. Follow her on Twitter at @thealissasmith or email her at AlissaS@centralfloridafuture.com.