THREE FAMILIES in Ellicott City are struggling to care for their seriously ill children. A generation ago, no one could have imagined the problems they face -- not just with medical treatment, but with structuring their lives to meet their children's needs.
Anna Marie DeWitt, 2, had brain surgery for cancer as her older sister, Kelsey, 5, started kindergarten at Resurrection St. Paul School in Ellicott City.
Their parents, Trish and Brian DeWitt, live in Ellicott City and seldom discussed their family's situation with others.
"We wanted to shield our 5-year-old from questions about her sister's health," said Trish.
Trish's parents, Angie and Carl Gunshore of New Jersey, came to the school for Grandparents Day in October and "really opened up to us and to other grandparents," said Karen Oltmanns, Kelsey's kindergarten teacher.
"In the beginning of the year, we weren't community yet," she said, but once the Gunshores shared the family's story, the school community reached out to the DeWitts.
"People cooked meals and provided maid service. A lot of moms have picked up Kelsey from school when we were at the hospital," said Trish.
Anna Marie was scheduled to go to Johns Hopkins Hospital for a stem cell transplant and intensive chemotherapy last week. The family had expected her to be in the hospital for five weeks. Students wanted to make the hospital room cheerful, perhaps with a quilt.
They learned that Anna Marie could have one personal item. She chose her blanket.
Everything else would have to be plastic so that it could be sterilized. Oltmanns helped the kindergartners decorate paper squares printed with the alphabet and the numbers 1 to 10 in bright colors.
The eighth-grade class, which also did research on stem cell surgery, made drawings on other paper squares.
The squares were laminated and made into paper quilts that could be hung on the wall of Anna Marie's hospital room.
"We pray daily" for Anna Marie as part of the school's opening prayers, Oltmanns said.
The Gunshores came to Ellicott City last week to care for Kelsey while Anna Marie went to the hospital for the surgery, so that Trish does not miss too much time from work.
The doctors found more evidence of cancer, so the transplant had to be postponed.
Now they are planning for six weeks of radiation treatment.
Wednesday afternoon, doctors asked Trish to bring Anna Marie to the hospital early Thursday for an MRI. By Wednesday night, they had changed the appointment to 1: 30 p.m. Thursday.
The family changes schedules constantly to accommodate Anna Marie's treatments.
"It's almost easier for me because I am doing something," said Trish.
Hoping someone will help
On Wednesday, Robert Gray, 41, took his younger son, Phillip, 15, to Johns Hopkins Hospital to replace his full-body cast with a lighter upper-body cast.
He expects his son to be a patient at Mount Washington Pediatric Hospital until June.
Phillip had a spinal fusion Aug. 25 to treat curvature of the spine. After the operation, Gray recounted, the surgeon came out and with an anguished look on his face said, "Phillip's not moving his toes."
Phillip has not walked since.
He lived at home for several months and then returned to the hospital for a second surgery, a bone fusion Jan. 19. The Grays, Robert and his wife, Maria, live in a townhouse in Ellicott Meadows.
Robert's insurance pays for the hospitalization and will pay for a therapist to visit Phillip in their home, says Robert, but it will not pay to install a ramp.
Robert, who is facing a layoff from Giant Food when it closes its bakery in June, is worried about his financial future.
Phillip's bedroom had been upstairs, but Robert is considering fixing up the family room in the basement and installing a bathroom on that floor so the family can care for Phillip.
The family does not have the money to make these changes.
Call 410-750-7922 to help.
Melissa Arnold has faced hurdles as well. Arnold moved here from Iowa in 1996 with her two sons, Daniel and Adam, now 17 and 10, so Adam could receive treatment to correct his short thigh bone, a rare birth defect.
Adam has had nine surgeries in the past 3 1/2 years. The treatment has been paid by Medicaid.
Arnold says she and her family can make no more than $25,000 to remain eligible for Medicaid. She started as a part-time clerk and is director of marketing for the Howard County Tourism Council.
She recently turned down a 20 percent raise so she could keep Medicaid coverage.
She was invited to Washington on March 22 by Sen. Charles E. Grassley, an Iowa Republican, to speak in the U.S. Senate to support the Family Opportunity Act.
The Family Opportunity Act seeks to increase the income limits for families to get help with medical needs.
"I was so nervous, I couldn't think," she said.