7-year-old Chapel Hill boy named St. Baldrick's ambassador
CHAPEL HILL (WTVD) -- Tina Sandi and her husband were living in Florida with their two girls when what seemed to be a routine trip to the doctor for their youngest daughter turned their life upside down. 16-month-old Althea had been suffering from a lot of colds and was tired. But it was a rash on her stomach that tipped doctors off to something much more serious.
"They looked and saw she had a rash on her torso which turned out to be petechiae, which is small blood vessels bursting on the surface of the skin when you have really low platelets. And that's one of the things that happens when you have leukemia," recalled Sandi.
And sure enough, test results confirmed it was indeed acute myeloid leukemia, or AML.
"It is a very difficult disease to treat and she had treatment for about 10 months, and then we lost her in December 2006," said Sandi.
Sandi describes the period after that loss as being very dark. But slowly, life got back to normal, and then there was room for celebration when she and her husband had a son, Phineas. Then, the unthinkable happened. Lightning seemed to strike twice when Phineas was taken to the doctor for what they at first thought was simply a cold or an ear infection.
"(The doctor) ordered a blood test and sure enough, back to the emergency room, and a diagnosis of leukemia, but a different kind this time," his mother stated matter-of-factly.
Phineas, as it turned out, had Acute Lymphoblastic Leukemia. He underwent chemotherapy, but it was unsuccessful. Running out of options, doctors enrolled him in a clinical trial for immunotherapy at the National Institute of Health in Bethesda, Maryland.
"It was successful! It got him into remission, we came back here to UNC to have a bone marrow transplant," Tina shared.
That was two years ago and Phineas, now seven, has been cancer free ever since.
As it turns out, the immunotherapy treatment that saved his life was partially funded by St. Baldrick's. And, the doctor in Maryland who treated him was a fellow of the foundation. So, when St. Baldrick's approached them to make Phineas an ambassador, the Sandis immediately agreed to join the fight, sharing their story with others.
"(After Althea's death) we wanted nothing to do with pediatric cancer, we were just completely devastated, didn't want any part of it. But then, we got the diagnosis of our son's cancer, it was a real wake-up call that we couldn't ignore pediatric cancer anymore. Once we learned about St. Baldrick's and what they do and what a pivotal part they played in our son's recovery from this disease it was a no-brainer that we needed to get involved with pediatric cancer research and advocacy," she said.
Phineas' story is not only being shared nationally, he will be attending local events, such as the head-shaving fundraisers St. Baldrick's is perhaps best known for. The next such event is coming up April 9th at the Raleigh Beer Garden off Glenwood South. For more on that: https://www.stbaldricks.org/events/mypage/115/2016
And for more on immunotherapy and its uses in the fight against cancer:
