STILL A COMPANY TOWN
THE MYSTERY CONTINUES TO KILL
Vegas Review-Journal Fallon Cancer Cluster Archive
personal note from an editor and father
Daily Sparks Tribune Editorial 11-21-2001
Usually, this space is reserved for the semi-anonymous views of the Tribune's editorial board. Today, I am taking advantage of my position as editor to write a personal note.
Heaven claimed one of its angels this week. Ashley Rose Kisman
the five-year-old Spanish Springs girl whose battle with leukemia was
detailed here died this week.
Wilson, Managing Editor
EMPLOYEES RALLY TO AID TINY LEUKEMIA VICTIM
Workers cash in sick
days to help pay four year-old's hospital bills
SPARKS (July 10, 2001) When United Parcel Service employee Debbie Bryan found out that co-worker Shane Kisman's four year-old daughter had been diagnosed with leukemia, she told him she wanted to help in any way she could. Kisman told her they were going to need a lot of money to pay for his daughter Ashley's therapy, lengthy hospital stay and eventual bone marrow transplant.
The Kismans also have to pay travel expenses from their home in Sparks to Oakland, California, where Ashley is staying at a children's hospital. Bryan found out about a UPS program through which employees may cash in their sick days and donate the money to the Kismans for Ashley's medical care.
The donations are funneled through the Angel Kiss Foundation, a nonprofit organization.
"We're giving UPS drivers a place to send their money and have it be tax deductible," said Iris Imperial of Angel Kiss. "We also work in conjunction with some other businesses in putting together something for Ashley, " she noted.
Imperial said there is currently no other fundraising going on, but she is looking for any independent business to help with fundraising. Bryan estimated that 40 people have signed up so far to donate their sick days, each one worth about $150.
Despite the help from UPS employees and Ashley's daycare provider in Spanish Springs, medical bills are still mounting. Kisman said hospital charges, excluding the costs of doctors and anesthesiologists, was up to $300,000 at the end of June. That number is going to increase rapidly after July 24 when Ashley is scheduled to receive a bone marrow transplant. Although she is not an exact match, Ashley's mother will be the bone marrow donor. Kisman said that because of money constraints, his daughter is not receiving the best care available.
Hospitals in California and Oregon asked for hundreds of thousands of dollars up front before Ashley's transplant could be performed there, but the Kismans didn't have that kind of money.
"My daughter's life has come to nothing more than dollars and cents for these people," Kisman said. "We're fighting to get things reconciled so we can get the treatment she needs," he added.
Bryan said one of the most compelling reasons for her to raise money for Ashley's treatment was that hospitals were refusing to treat her.
"I think it's ridiculous that you can deny care to a four-year-old because of a lack of money," Bryan said. "They're not even going to look for a matched donor because UPS insurance doesn't cover any of that. That's horrible." she stated.
Bryan is organizing a golf tournament to be scheduled in late August or early September and will continue to take sick day donations until July 20.
Kisman said Ashley's transplant was originally planned at a hospital at Stanford University, but the facility asked for $600,000 in cash before the procedure could take place. UPS insurance will pay only $150,000 toward bone marrow transplants, Bryan said, which leaves a lot for the family to cover.
"I don't know a whole bunch of people who have $450,000 stuck between the cushions of their couch," Bryan stated.
Kisman said the family scrambled to find another place. "Oakland Children's Hospital agreed to help us out," Kisman said.
"Her best chance of survival will be to use bone marrow from a five out of six match from her mother, which may cause other complications. It's all due basically to money," he noted. Kisman said Ashley's conditioning for the surgery begins on July 16. She will get two doses of radiation daily for five days, then two days of high-dose chemotherapy. She gets one day off, then she will receive the transplant.
Kisman said he operates on between two and four hours of sleep. He works nights, then spends his days on the phone, calling people to bring attention to his family's problems with medical costs. "My time is spent on the phone and filling out insurance applications instead of with my daughter," Kisman said.
"It's a huge battle because the state of Nevada has no facility to treat children with leukemia. So we all have to go out of state. And because I work and have insurance, there's no program to benefit families like mine. We're left out on our own."
Kisman also has a son, Zach, 7, and two stepchildren, Koree, 10 and Breanne, 11. He said his family has helped to keep things going while he makes sure Ashley is receiving treatment.
"I'm working as many days as I can," Kisman said. "My mom and sister drive in from LA to take take different shifts at the hospital because she's only four years old. There's no nurse 24 hours a day, so someone has to be there especially when she's getting chemo and other things. Even going to the bathroom is a major ordeal," he added.
Through it all, Kisman said Ashley has been very strong and upbeat.
"She turned her hospital bed into a trampoline, her trampoline away from home," Kisman said. "We want to make our daughter survive."
Copyright © 2001 Daily Sparks Tribune. Used by permission.
EDITOR'S NOTE: Shane Kisman is a member of Teamsters Local 533, which is also helping raise money for his daughter. Union members may contact business representative Mark Tracy at (775) 348-6060.
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Mail donations to
cluster overshadows local dramas
SPARKS (June 6, 2001) -- While
media attention has focused on 14 cases included in the Fallon cancer
cluster, at least 55 local children have also been dealing with cancer.
The families of those children are also dealing with the fallout from the coverage.
"Every family has said something to me," said Diane Malek, a social worker at Oakland Children's Hospital, which treats most childhood cancer cases from northern Nevada.
families feel ignored. Their situation is exactly the same."
"They had us fly her down
immediately," Shane Kisman recalls. "They wanted her
there within four hours, so our only option was to fly."
After several weeks of chemotherapy
treatments, Ashley's leukemia went into temporary remission. She was home
for two weeks before a relapse forced her return to the hospital. Kisman
said she will likely not be home for six more months.
During her short visit, Ashley
saw a news story on television about the children from Fallon and their
recent trip to Disneyland. She asked her father when she would get to
Kisman said he has tried to
get some attention for his daughter's situation and the plight of other
families in similar circumstances. He said he was told by several media
that unless his daughter is included in the Fallon cluster, he does not
have a story.
"I do have a story because
I have a little girl who's dying," Kisman said. "We're in the
same hospital as some of the kids from Fallon. The difference is they
come in here for a couple of weeks and go home. We're stuck there for
Wiping away tears, Kisman said
he has no ill feelings toward any of the families. Instead, he said he
is frustrated by the lack of sensitivity shown to local families.
"Nobody wants to know
about it," Kisman said.
Ashley is currently undergoing
regular chemotherapy treatments which have caused all of her blonde locks
to fall out. Doctors are searching for a match for a bone marrow transplant
her last chance for survival.
Acute myeloid leukemia is very
aggressive and very hard to treat. Right now, doctors give her a 30 percent
chance of living, but even if a bone marrow donor is found, many obstacles
to her recovery remain.
Ashley stays in the hospital
for weeks hooked up to an intravenous (IV) line receiving chemotherapy,
daily blood tests, weekly spinal taps and blood platelet transfusions.
She is unable to leave her room
Ashley can't go the restroom
without assistance because of the IV. Kisman said even eating is an ordeal
because the chemotherapy kills her appetite. A family member is constantly
with Ashley, her mother, father, aunt or uncle.
"We try to do shifts because
when you're there, it's overwhelming," Kisman said. "It's just
draining. It takes a couple of days to get back into your routine when
you get home."
The financial impact also has
been tremendous. Each week Ashley spends in the hospital costs more than
$42,000 which covers only the room and nursing, not treatments, tests
or physician fees.
A fund has been set up to help. Donations can be made at any U.S. Bank to the Ashley Rose Kisman Fund. Angel Kiss, a local charity, also helps families dealing with childhood cancer. They can be reached at (775) 853-8335.
Copyright © 2001 Daily Sparks Tribune. Used by permission.
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