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Leaving no stone unturned in search for marrow donor

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Leaving no stone unturned in search for marrow donor

Picture of Danielle Gaines
Leaving no stone unturned in search for marrow donor
Merced Sun-Star
Monday, August 10, 2009

By DANIELLE GAINES
dgaines@mercedsun-star.com

The hot, dry days of August have always proven happy ones for the Vitelli family: husband Chris' birthday is today, 11-month-old Conner was born on the 12th, Summer and Chris were wed on the 18th, just under three years ago.

This year they hope to add another event to the joy list: finding a bone marrow donor to cure Summer of severe aplastic anemia, a debilitating blood disease that at times has left her covered in bruises, beyond exhausted and unable to leave the house.

But time is of the essence.

A doctor at the Stanford clinic where Summer has been treated since discovering she was ill last February has given the family four weeks to find a suitable bone marrow donor before Summer must undergo her second round of chemotherapy treatments in just six months.

"If no match is found for me, then I have to go back through the same treatment I've already been through," Summer said, her voice cracking. "And that didn't work."

Since the beginning of the month, the family has hosted several events encouraging people to register for the national bone marrow registry drive.

Ninety-three people registered at an Aug. 1 event in Merced, 20 more in Sonora, and 52 in La Grange.

Chris is originally from Florida and his family is holding an event there. Summer's stepfather, Rob White, has organized most of the drives and helped his aunt plan one in Atlanta.

At the Stanislaus County Fair on Friday night, the family hoped to register 400 people.

"It's such a good feeling (to hold the drives) because this really rocked our world," Chris Vitelli said. "Finally there is something good coming out of this event that has just been so horrible."

Yet there is no match for Summer.

"But my spirits are good. I don't have any doubt that we will beat this," she said. "I know it sounds bold, but we are going to find someone."

Trina Brajkovich, an organizer for Be The Match, has helped the Vitellis set up their registry drives, some with higher turnouts than Bay Area events.

"This is the most phenomenal family I have come across -- and I've done a lot of drives," Brajkovich said. "I've never seen a family like this. The whole family is a hero."

Brajkovich stressed the need for registrants in the National Marrow Donor Program Registry.

Because donors have to match patients on 10 DNA traits, matches for some people can be hard to come by. A white patient has a 73 percent chance of finding a match in the registry now, while African-Americans are least likely to be matched, with just an 8 percent chance, Brajkovich said.

The database keeps track of donors from around the world -- including a Vitelli family friend living in Kuwait who registered earlier this summer.

"Really, you never know where that match for Summer will come from," Brajkovich said. "It could be Europe, it could be Merced."

The family doesn't doubt someone, somewhere will come through.

Summer's chance for a cure now is down to a "numbers game," White said. More willing donors in the registry mean a greater chance for a match, prompting the registration push.

After a registry drive, cotton swabs with DNA taken from inside the cheeks of potential donors are sent to a lab where some people are determined ineligible to donate, mostly for health reasons.

It takes about a week-and-a-half to process the DNA samples. If a match for Summer is found, it will be back to Stanford for a full bone marrow transplant.

The donor cells will be harvested in one of two ways. Some 80 percent of the time, the donor will undergo an apheresis procedure: one needle will be injected into each arm and blood will be drawn from the left. The blood will go through a machine to retrieve T-cells, immature blood-forming cells. The rest of the blood is returned to the right arm.

The other 20 percent of the time, a hollow needle is used to withdraw liquid marrow from a patient's hip bone.

Anyone who registers for the drive should be willing to donate through either procedure to any ailing patient.

"I wouldn't want someone to only do it for me, then match someone else and back out," Summer said.

Aplastic Anemia is a disease in which the bone marrow stops making enough red blood cells, white blood cells and platelets for the body, according to Be The Match.

Red blood cells carry oxygen through the body, platelets help control bleeding and white blood cells fight infections.

It's been a long road for the Vitelli family since Summer's February diagnosis.

Summer's white blood cell count was so low in the beginning -- with blood tests once measuring none at all for six weeks straight -- that a simple cold could have killed her.

She had to immediately quit her job as an instructor in Merced College's English Language Institute. The family retreated into a forced isolation.

Conner can't attend daycare -- too many germs he might carry home -- and the family can't attend large public gatherings. Family and friends with a case of the sniffles have to stay out of their home.

The house had to be cleaned constantly, but Summer's severe exhaustion relegated her to bed or the couch. Her mother, Rob's wife Candy, took a leave of absence from her teaching job in Lake Don Pedro to help out.

Summer wears long sleeves and long pants -- even on a recent 90-degree day -- to cover the bruises that form so easily under her pallid skin.

Playtime with Conner has grown harder to do, but also much more special, Summer said.

"My best days are days when I really feel good and I can do things with the baby," she said. "He brings a lot of joy to our house. If it weren't for him, I would probably lie on the couch all day long, doing nothing."

When a bone marrow donor match is found, the Vitellis will move to Palo Alto for three months. Summer will undergo a bone marrow transplant procedure, which starts with intense chemotherapy.

While the surgery itself is high-risk, the results are thought to be a permanent cure, Brajkovich.

"We're not trying to act like we understood this before, because we didn't really," Chris said. "But we want other people to understand it like we do now."

This weekend Summer and Chris will host a small birthday party for young Conner, just family and a few friends, at their Merced home.

"Summer wanted it to be a very happy occasion," Chris said. "No one is going to even mention severe aplastic anemia."

After a while Brajkovich will add up all the potential donors sent to the registry by the Vitellis and share the number with the family.

"She may get her match from Kansas City, but I want to be able to tell her family, 'This is the number of lives you have saved,'" she said.

Reporter Danielle Gaines can be reached at (209) 385-2407 or dgaines@mercedsun-star.com.

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TO REGISTER:
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* Order a swab kit through the mail by registering at http://join.marrow.org with SummerHope as the promo code.

* Register at Blood Source in Merced or any other blood bank. To set up a registry drive:

* E-mail Be The Match at outreach@nmdp.org, or call (800) MARROW-2 (1-800-627-7692).