PHILMONT – Thirteen-year-old Brianna Chase and her mother, Danielle Howard, sat on their front porch watching Brianna’s siblings Gavin, Amiya and Amora play in the yard. It was a lovely fall Saturday afternoon but Brianna, who was well enough to attend school only two weeks last year, said she was tired and went back into the house.
Her family is teetering on the edge of economic disaster. Brianna’s leukemia, which requires frequent trips to Albany for medical treatment, has limited her stepfather’s ability to get to work consistently.
Danielle’s husband, Clarence “Joe” Howard, used to work for a boys group home in Kingston and later changed jobs to work a full-time job in a similar situation. Last year, he had to take a considerable number of days off from work to mind the children so that his wife could accompany Brianna on trips to Albany for chemotherapy, and in January, Joe’s employer moved him from full time to part time, reducing his $48,000 per year salary to about half that amount. To get back on a full-time schedule will require a much improved attendance record and luck with Brianna’s health.
Joe’s employer still funds his family’s health insurance, and for that they are extremely grateful.
Danielle said the family is falling further behind. Their debt grows by around $1,100 each month. The couple’s first priority is rent and food, but they are three car payments behind. The children’s grandparents send checks when they can, and that has helped, she said. The family economizes by shopping for clothes at the Salvation Army, but there’s a limit to what belt-tightening can accomplish.
“Bill collectors don’t understand. We’ve never lived lavishly; we’ve always lived paycheck to paycheck,” said Danielle.
Paycheck to paycheck worked fine until Brianna got sick around the end of 2008.
When she complained of fatigue and got swollen lymph nodes and joint pain, her pediatrician suspected a virus and predicted recovery. She was tested for mono but didn’t have it. After eight months of uncertainty, a lymph node biopsy revealed the cause of the problem, acute lymphoblastic leukemia.
Chemotherapy, even as it saves her life, has taken its toll on Brianna. Encephalopathy and neuropathy, common side effects of drug therapy, have given her balance problems that, combined with increasingly brittle bones, forced her to give up sports. Last year she broke her ankle and elbow. And chemotherapy impairs the immune system.
“A simple cold can lead to pneumonia.” said her mother. This year they have something new to worry about: seizures. Her doctor attributes them to stress rather than epilepsy, but she once had 13 in one day. They’re a serious problem that further impinges on her independence.
Last year Brianna, who attends eighth grade at Taconic Hills and is a good student, could hardly go to school. She only attended about two weeks during the entire year and lost touch with all her friends. This year things are looking up. She has hardly missed a day and is making friends with girls she meets on the bus.
She now gets chemo injections and IV chemotherapy only once a month, but must take medications by pill four times a week. It’s a long haul. She won’t be finished with the four-year protocol until April 2012.
“We have to seek help. If we don’t we’re going to lose everything,” said Danielle last Saturday, sitting on the porch. “It makes me nervous. We didn’t want to tell people, but maybe it will help others who are in a similar situation.”
The family receives food stamps, which bring in about $200 a month. Brianna and her brother Gavin get child support from Danielle’s first husband, but that combined with Joe’s salary give the family an income that makes them ineligible for other state or federal aid.
The stress of their predicament has affected the whole family. Her mother says Brianna understands the connection between her health and her family’s economic situation and has even mentioned suicide. Desperate, Danielle, sent an email asking Hudson Mayor Rick Scalera for help.
The mayor was quick to respond.
“I said to Danielle, tell me all the troubles you are going through so we can get you some help. It’s never easy when you have a sick child, having to watch a child go through that kind of pain.”
He also wrote a letter to the media: “The Howard Family needs help and until now have not publicly requested any. It’s important that this story gets out and hopefully Brianna and the Howard family are provided with the full support of a community with a long history of caring,” he wrote.
The mayor said he is also looking for a part-time position for Joe at the Hudson Youth Center. If something comes through there, the family might be able to make ends meet once more.
For more information or to make a donation log on to www.caringbridge.org/visit/briannachase.