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STILL FIGHTING
Eldridge tot awaits bone marrow transplant
By: Scott Campbell
This family photo of Mollie, Deven and Paul Strief was snapped last Thanksgiving, three months before Deven was diagnosed with his illness.
ELDRIDGE - 03/30/2005 - Things appear to be looking up for Deven Strief, at least for the time being. The 2-year-old Eldridge resident, the son of Paul and Mollie Strief, continues his daily battle with Very Severe Aplastic Anemia from his hospital room in Milwaukee.
While ATG drug therapy, along with 11 transfusions, appears to be taking hold, doctors continue to search for a bone marrow transplant donor that will most likely be necessary in the future.
"It's hard to say how soon a transplant will be needed," said Mollie, in a phone interview from Milwaukee where Deven is a patient at The Childrens Hospital of Wisconsin. "Right now he's pretty stabilized, and doctors put a lot of emphasis on how he acts.
"They really watch his fevers and infections. If he would get an infection, and not be able to kick it, that would be an indication that a transplant would be sooner rather than later."
Ideally, Mollie said doctors are hoping that they can put off a transplant until at least July 30, which is when the couple's second child is due. There's a one-in-four possibility that the newborn's marrow would be a match with Deven's.
However, that's no guarantee, so Deven's friends and family members are being proactive in terms of helping find a donor.
A bone marrow drive, in Deven's name, is being held Thursday, April 7, from 3-7 p.m. at the Mississippi Valley Regional Blood Center in Davenport. Potential donors will need to fill out a consent form and donate a test tube of blood.
Their tissue type will then be entered into the national bone marrow registry, and may ultimately help save Deven or someone else's life.
"A lot of people have been curious how they could help, and a lot wondered about being tested for Deven," said Mollie. "This drive is a way that people can not only possibly help Deven, but someone else as well. The more people on the registry, the better.
"We are really encouraging people to do the testing, and in reality, only 2 percent who are registered ever get contacted. But, the more that are tested, the better chance there is for a perfect match."
It's been a whirlwind month-and-a-half for the Strief family, who have spent just three nights in their own beds since jumping on this emotional roller coaster on Feb. 14.
It wasn't exactly a fun Valentine's Day for the young family.
"In the week prior to the diagnosis we noticed that Deven's legs were bruised," said Mollie. "We had gone swimming at the Davenport Holiday Inn the weekend before, and just thought the bruises were from him bumping his legs on the stairs.
"Then he started getting these little red dots on his body, and we thought it was a rash caused by a reaction from the chlorine in the pool."
Mollie and Paul kept a close eye on the bruises for about a week, and they felt they were increasing in number.
"One night we were giving him a bath, and we both noticed that he had four more bruises that he didn't have earlier that morning," said Mollie. "We called the doctor the next morning. At first, they said they could schedule him for an afternoon appointment, but when Paul mentioned that we thought it might be leukemia, they got us right in."
Upon arrival the doctors did a blood test and discovered that Deven's platelet count was at 6,000. Normal is between 150,000 and 300,000. He also had low white blood cell and hemoglobin counts. He was immediately referred to University of Iowa Hospitals in Iowa City.
"We had an appointment within two hours and headed to Iowa City immediately," said Mollie. "As soon as we got there doctors did a bone marrow biopsy. They came back and said they didn't think it was leukemia, but that they didn't know what it was.
"Later that night they came back again and said it looked like Severe Aplastic Anemia, but that they wished it had been leukemia because there were more treatments for that. We had a pretty restless night, and the next day we started learning as much as we could about the disease."
Over the next couple of days Deven had several platelet transfusions as doctors watched his numbers plummet.
"If Deven would have had a sibling, they would've immediately gone to a bone marrow transplant," said Mollie. "But since there was no sibling, they decided that drug therapy was the best option at that time. "The idea was to use drugs to suppress whatever was causing the bone marrow not to function, and hope that the marrow would later kick in."
Deven was on an IV for four days, but the results of the treatment wouldn't be known for four to six months.
In the meantime, Deven's diagnosis was downgraded to "Very" Severe Aplastic Anemia because his neutrophil count was at zero. Anything under 200 is severe. A healthy person's count is in the 1500 to 1800 range. Neutrophils fight infections in the body.
While Mollie and Paul kept a close watch on Deven, family members and friends, most notably Mollie's sister-in-law, Jessica Strief, began compiling research on the disease. They located families who had had children with the disease, and found out that many of them had been treated at The Childrens Hospital of Wisconsin in Milwaukee.
How rare is the disease? Approximately 1000 people are diagnosed annually, but very few are children. Paul also did some research on the Internet. He found that the survival rates for bone marrow transplants after one year at University Hospitals was 22.6 percent, while Childrens Hospital had a 67.2 percent survival rate.
In that time period (1996-2000), Wisconsin had treated eight severe aplastic anemia patients with a bone marrow transplant, and five were alive after one year. For the same time period at Iowa City, doctors there had treated two patients with marrow transplants and both had died.
"Everybody that we talked to spoke very highly of the hospital in Milwaukee, and especially Dr. David Margolis," said Mollie. "I called him right away, and this is kind of his specialty."
Deven was released from Iowa City on March 1, and the next day the Striefs were in Milwaukee. Originally, since Deven didn't have a fever while he was in Milwaukee, Dr. Margolis was willing to have Deven monitored at home, and visit Milwaukee just once a week. However, the day after the family returned to Eldridge, Deven was admitted to Genesis Medical Center with a fever, and then flown to Milwaukee. He's been there ever since.
Mollie, a dental hygienist in Moline, stays with her son 24 hours a day. Paul, who works for Hiland Toyota, makes the trip to Milwaukee twice a week.
Once back in Wisconsin, Deven bounced back and forth between the hospital and the Ronald McDonald House, and finally, on March 23, the family got some good news when Deven had a neutrophil count of 87. He's been in the hospital since March 23, but is in good spirits.
"As long as he feels good, he acts just like a typical 2-year-old," said Mollie. "He really tolerates the IV well, which he has whenever he's in the hospital. He really misses his friends, and is always asking when he gets to go home and back to Penny's (Beem, his daycare provider) house."
Still, the Striefs worry about the future.
"There is always the worry about him dying," said Mollie, "but what gives us the most confidence is the way he does act and how he pulls through each infection or fever. And now that we're seeing some neutrophils, that has definitely given us a ray of hope.
"It's hard to say what the future holds. The statistics say that drug therapy works 33 percent of the time. Thirty-three percent of the time it works temporarily, and 33 percent of the time it doesn't work."
As of now, the bone marrow transplant is still the best option for a total cure. Doctors started seriously talking about it three weeks ago and immediately began searching the marrow donor registry. It can take up to two months to find a perfect match.
"We are still holding out some hope that the drug therapy will work," said Mollie, "but we've learned to take things day by day. Just because his neutrophil count has gone up a little, that doesn't guarantee anything. Deven could develop a serious infection at any time and that would mean he'd have to have an emergency bone marrow transplant."
The transplant effectiveness numbers are encouraging. If the marrow is taken from a matched sibling, transplants are between 80 and 90 percent effective. With a matched unrelated donor, there is a 70 percent survival rate after one year.
"Right now, Deven's outlook is good and we're definitely staying positive," said Mollie, "but the one thing that we feel very fortunate about is living in Eldridge at a time like this. Our neighbors have been like another family, and we are so blessed to have the family and friends that we do. The outpouring of support and prayers has been a major eye opener for all of us." While Paul and Mollie are thankful to have "excellent" medical insurance, friends are still finding ways to help with expenses.
A fund has been established at DuTrac Community Credit Union in Eldridge, and checks may be mailed there in Deven's name. In addition, a Scrapbooking Benefit is being planned for May 14 at North Scott High School, and anyone wanting information on that may contact Penny Beem at 285-2356.
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