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Things brighter for fire medic's son
The son of a Venice fire medic is battling a rare blood disease and is ahead of the curve, according to his father.
VENICE - 03/18/05 - In a few words, Venice fire medic Steve Worobel speaks volumes about his teenage son. "He is stabilized," Worobel, 33, said, "doing better than he was."
The boy was diagnosed with aplastic anemia, a rare blood disease, last November. There is a chance he will need a bone marrow transplant.
"The medication has taken some effect," Worobel said. "We are waiting to see they can give him two rounds of the drug therapy he's on."
Worobel said his son is on the drug ATG, which in fighting the disease, suppresses the immune system. He said Stephen got his first round in December, but only two rounds of ATG can be given. He said doctors do not know yet when, or if, Stephen will need a second round.
Meanwhile, Stephen is home now. His father's training as a fire medic has come in handy.
"I have to give him his shots, change dressings, things like that," Worobel said, "so yes, the training is useful but then it's so different than giving shots to strangers. This is my son."
Stephen has had a Broviac tube surgically implanted in his chest so that different medications can be given without having to prick him with a needle.
Worobel said the boy's white blood count has risen.
"His bone marrow is slowly growing again, which is a great sign; there are children who do not show any progress with the drug," Worobel said. "Doctors say he has shown a 30-percent growth in bone marrow since December."
Worobel said he must take Stephen up to St. Petersburg three times a week for treatment.
He said the lad's spirits are good.
"He has his moments, you know, a 14-year old wants to be jumping around, he wants to be back in school," Worobel said. "But, because of the risk of infection, he can't go back, so Sarasota County has provided a home teacher for him."
Worobel said Stephen is the 14th child in the nation to be part of a study on the effectiveness of the drug ATG.
Worobel also said the medical bills are piling up and that he has good insurance.
"I have no idea what it's costing," he said. "But I can tell you that for four days in the intensive care unit, it was $48,000."
The Venice Fire Department Benevolent Fund is sponsoring a "Steven Worobel Jr., Bar-B-Que Benefit" 11 a.m.-6 p.m. Sunday at the Moose Lodge, 111 N. Auburn Road, Venice.
There will be a raffle and music from 2 p.m. to 5 p.m.
The cost is $7 for a meal to eat there or take home.
The benefit is to collect money to help the Worobel family defray medical costs.
Donations can be made to the Venice Fire Department Benevolent Fund through any of Community National Bank's four Venice-area locations.
* 201 Center Road, 497-6660
* 270 S. Tamiami Trail, 486-6660
* 4150 S. Tamiami Trail, 497-0088
* 1077 N. Tamiami Trail, 484-3201.
For more information, contact Lt. Bob Rizzso at 400-3030.
Aplastic anemia is not a single disease, but a group of closely related disorders characterized by the failure of the bone marrow to produce all three types of blood cells: red blood cells, white blood cells and platelets.
Aplastic anemia is rare, affecting fewer than 1,000 people each year in the United States. The exact cause of aplastic anemia is unknown.
It is also believed that some cases of aplastic anemia are inherited and that some cases are due to a viral infection.
In aplastic anemia, the quantity of each of the three blood cell types is much lower than normal.
These symptoms are unexplained infections due to fewer white blood cells, unexpected bleeding due to fewer platelets and fatigue due to fewer red blood cells.
Aplastic anemia is strongly suspected when two or three of the cell counts are extremely low. A definitive diagnosis is made if a marrow sample (a biopsy) shows a great reduction in the number of cells in the marrow itself.
Source: Aplastic Anemia & MDS International Foundation Inc.
You can e-mail Tommy McIntyre at tmcintyre@venicegondolier.com.
Marine Needs Your Help
By Commander, Navy Region Southwest
SAN DIEGO - May 20, 2005 - Marine Lance Cpl. Chris LeBleu’s body isn’t making enough red blood cells, a condition known as aplastic anemia. Having recently undergone a liver transplant September 2004, after his own liver failed, LeBleu became afflicted by the anemia, which occurs after liver transplants only 0.7 percent of the time.
“This is just a bump in the road. It’s a big bump, but it’s something that we’re going to overcome together,” said his wife, Melany LeBleu. “He’s a fighter and he’s fighting even harder today.” Because his body is not producing enough red blood cells, doctors say he may need a bone marrow transplant.
Bone Marrow Donor Drive Coordinator Lt. Cindy Campbell said, “Hundreds of military personnel and family members need life-saving bone marrow matches, LeBleu is one of many who need your help. “What if this were you, your son, your brother, your husband, would you sign up - absolutely, so come out and register.” Campbell said there are many misconceptions about being a donor. All one has to do is give a tablespoon of blood on the day of the drive and fill out some paperwork.
“If you’re ever called to be a donor, it’s a simple procedure that takes less than 60 minutes,” said Campbell. “Only a very small amount of your bone marrow is needed to save a life.”
To help save Lebleu, and others in need like him, a Bone Marrow Donor Drive is being held May 25 from 9 a.m. to 4 p.m. at the Navy Exchange (dry side) at Naval Base San Diego and May 26 from 9 a.m. to 4 p.m. at the Navy Exchange at Naval Air Station North Island.
No appointments are necessary, and for more information contact Lt. Cindy Campbell at (619) 532-4734 or (619) 532-4921.
She lost a daughter, but not hope
Canadians opened their hearts, wallets as thousands of donors had blood tested
The four-month campaign to save 6-year-old Elizabeth Lue from a fatal blood disorder raised more than $1 million in 1990. In 1990, Phillipa Lue pleaded for bone marrow. Now she's spreading the word about stem cells
Michele Henry
Staff Reporter
Jul 23, 2007 - When thousands of people donated blood and money in 1990 in a frantic effort to save the life of 6-year-old Elizabeth Lue, no one had ever heard of stem cells.
Today, they represent a hope for curing what killed her.
The little girl captured the heart of Canadians with her fight to stay alive. She suffered from aplastic anemia, a rare blood disorder, and died Aug. 7, 1990, after a four-month campaign to find her a bone marrow match.
Nearly two decades later, her mother, Phillipa Lue, and Dr. Joseph Wong, a community leader who spearheaded the effort to keep her alive, want to revive Elizabeth's legacy. They plan to put $250,000 gathered in her name into helping Canadian Blood Services make stem cells, extracted from umbilical cords, accessible to the general public.
The money, left over from the Elizabeth Lue Bone Marrow Foundation, sits in several Bank of Montreal accounts.
"When Elizabeth passed away we wanted to make sure her death was not in vain," Lue says. "Time has shown us there are many others like her and no family should have to go through what we went through. The foundation and the work are in her memory."
Elizabeth was diagnosed with the fatal illness in January 1990, and doctors predicted it would take 5,000 people to find her a bone marrow match. Only a transplant could save her from a disorder that stopped her bone marrow from making sufficient blood cells.
More than 10,000 people gave blood but to no avail.
After Elizabeth died, some of the fund money was used to help others find bone marrow. Wong also gave some money to the Hospital for Sick Children to finance bone marrow research. But the bulk of the funds remained untouched.
Wong and Lue debated what to do with the $250,000, until they learned about stem cells. The non-specific cells came into public consciousness at the turn of this century. Stem cells, which can develop into various types of tissue, such as blood, make finding a match less important than it is with bone marrow or blood.
For that reason, more and more transplants today are done with stem cells extracted from discarded umbilical cords, rather than cells taken from bone marrow.
When Wong and Lue heard that Canadian Blood Services recommended last month establishing a national cord blood registry, their minds were made up.
"The future is in cord blood and stem cells," Wong says. "Science is at a stage of exciting developments."
Wong and Lue are determined to use the fund money to educate the public about cord blood, stem cells and draw awareness to donating such tissue to the registry.
In 1990, there was considerable worry that stigma in the Chinese population about giving away bodily tissue would prevent possible matches from coming forward. And finding an exact match for Elizabeth was like searching for a needle in a haystack, Wong says.
Wong and Lue plan to use the money raised in Elizabeth's name to teach the public, especially those in minority populations, why it's important to donate cord blood after a birth to the registry once it's set up.
Dr. Armand Keating, stem cell expert and professor of medicine at U of T, says a registry could help people from communities that are underrepresented in blood and marrow banks. "Most samples are from western European extraction," he says. "Quite a few patients don't have access to tissue."
Canadian Blood Services is pushing to establish a national database of cord blood, and Nanaimo federal James Lunney tabled a private member's bill six weeks ago to allocate money for such a project.
That gives Lue hope. "A public registry could be used to help, to benefit everybody."
Girl's donor list saved this 34-year-old from New Jersey
She'd never heard of Elizabeth Lue.
Cammy Lee had no idea that the bone marrow donor who came forward to save her life had first tried to rescue the 6-year-old girl. Lee found out about Elizabeth, who died in August 1990, more than two years later, long after her own bone marrow transplant.
Elizabeth's parents approached Lee to tell her their daughter's story.
Lee, now 34, was diagnosed with leukemia in 1986. After six years of chemotherapy, her cancer returned in 1992. She needed a bone marrow donor.
A registry co-ordinator at a hospital in New Jersey, where Lee lived with her parents, began scouring the globe for a match.
After an exhaustive search, Lee found luck in Toronto.
The Canadian Red Cross, now called Canadian Blood Services, had more than 10,000 samples from Chinese donors on record from a campaign in 1990 to save Elizabeth.
Virginia Lau had come forward to help save Lue.
Lau, who is believed to be living in Beijing, didn't end up being a match for Lue, but two years later, she was found to have the same marrow type as Lee.
Today, Lee works for the Cammy Lee Leukemia Foundation, set up in 1992 by her family to find a local match.
She recruits potential marrow and stem cell donors.
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