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5-year-old New Orleans boy with leukemia gets show of support at rock 'n' roll blood drive and fundraiser
The New Orleans Advocate - 12/19/2017
Not even inclement weather could keep people away from a blood drive and fundraiser Sunday at Gasa Gasa for 5-year-old New Orleanian Amos Trumble, diagnosed with leukemia less than three months ago.
With food, drinks and finger-painting for the kids in attendance, and bands that donated their time - including father Nick Trumble's band Trash Night - the only one conspicuously absent was the boy whom the event was all about.
That's because Amos is undergoing chemotherapy, which weakens his immune system and makes him vulnerable to all sorts of communicable diseases, meaning he needs to avoid large crowds.
"Amos has what's known as pre-B acute lymphocytic leukemia, which has a 90 percent survival rate when caught early and treated," said Dr. Dana LeBlanc, a pediatric hematologist and oncologist with the LSU Health Sciences Center at Children's Hospital.
"The standard treatment is about six months of very intensive chemotherapy and three years of subsequent maintenance therapy, done on an outpatient basis," LeBlanc said. "But during the first six months of therapy, Amos cannot be in school, or around a lot of people, as his suppressed immune system makes the risk of infection too high."
As a result, his kindergarten teacher from Edward Hynes Charter School in Lakeview comes to him.
"There's a national program called the 504 plan," Nick Trumble said. (That's Section 504 of the federal Rehabilitation Act; it has nothing to do with the New Orleans area code.)
"It mandates that if a child is disabled and cannot attend school, then home services must be provided. Amos' teacher comes to our house for two-hour sessions, twice a week."
If all goes well, Amos will be back among his classmates for first grade next fall, but in the meantime, the good-natured child has to alter his activities to stay healthy.
"He's technically homebound," said Heather Trumble, Amos' mother.
"He can go to the playground, as long as it's not crowded. The bigger challenge is that Amos has twin 4-year old brothers, and on the weekends we want them to have a fun childhood, even though Amos has to stay home. So, we often have one of his little friends come over, or Daddy will do a special art project with him while Mommy is gone with the twins."
The enormous expenses of medical bills and childcare have taken their toll, even though both parents have full-time jobs - Nick as a graphic designer at Manning Architects and Heather in the communications department at Freeport-McMoRan. In spite of insurance through their workplaces, there's much that isn't covered.
"We were just catching up," said Nick. "Although Amos was born healthy, the twins were premature and that came with lots of medical problems. I had been laid off when all three kids were young, so for a while I stayed home with all of them and avoided childcare costs. But, with Amos' diagnosis, now that Heather and I are both working, childcare costs are considerable, especially since Amos can no longer attend public school."
"And, strangely, insurance only completely covers disabilities, and cancer is not considered to be a disability, because Amos doesn't require a home health nurse or a feeding tube," Heather said. "After we pay our deductible and out-of-pocket medical expenses, Amos' home care is still the overwhelming expense."
Friends and colleagues, however, have come to the rescue for the family, who felt uncomfortable asking for help. A GoFundMe page has been put together for Amos (www.gofundme.com/help-amos-fight-leukemia), and between Mick's Irish Pub on Bienville Street and Robert's Bar on Calhoun Street, the donations have been coming in. Also, the Blood Center gives the family $10 for each person who donates blood in Amos' name.
The twins have felt some confusion about their brother's disease.
"Cyrus said to me that when he turns 5 and gets cancer, he'll get medicine, too," Heather said. "I had to explain that getting cancer is not a foregone conclusion when you become 5 years old."
And for Amos, the nuts and bolts of getting healthy are rudimentary.
"I have a port in my chest, and when I go to the clinic they stick a needle into the hole and pump in medicine," he explained.
"Amos is responding really well to treatment," LeBlanc said, "and considering that just a few decades ago, there was no cure for this disease, medical advances are keeping patients like Amos alive, and with hope for a future."