5-year-old awaits stem cell transplant

Searching worldwide, doctors could not find a match for the little girl who inspired 600 people to attend Rowan County’s largest ever bone marrow drive.

But Samantha Washko still has a chance to beat a rare form of leukemia that afflicts only a handful of people across the country.

Now 5 years old, Sam will undergo a stem cell transplant in October using blood from an umbilical cord.

“This is a very good option,” said Nancy Washko, Sam’s mother. “I really do believe it’s all going to be OK. I have a very strong feeling about all the prayers we’ve gotten and all the love.”

Nancy and her husband, Ken Washko, said they are overwhelmed not only by the record turnout at the August bone marrow drive, but also by the outpouring of love and support since Sam was diagnosed in July.

“It’s phenomenal the way this community gets behind people,” Nancy said, “the way the people of Rowan County and Salisbury have supported our family and treated us like family of their own.

“We get strength daily from the prayers and efforts of other people. We can feel it.”

The Washkos said they would love to thank each person individually, but there are simply too many.

Although Rowan County couldn’t provide a bone marrow match for Sam, it may for someone else.

“There are a lot of other children just like Sam who are going to be helped out now,” Nancy said.

The closest match came from Sam’s father, a Spencer dentist. But even Ken’s blood matched only four out of six characteristics of Sam’s blood, too risky for a transplant.

So doctors turned to the National Cord Blood Registry.

At certain hospitals across the country, parents of newborns may donate their baby’s umbilical cord. The cord blood is collected and stored in special banks.

They found two near-matches, one in New York and one in Los Angeles, Nancy said.

“They will use the one in L.A. because there is more secondary typing that was exact, and the concentration of stem cells was better,” Nancy said. “Up until the day she goes in, they will keep looking for an exact match.”

The Los Angeles cord blood also matches only four out of six criteria. But since stem cells are so pure, doctors will attempt a transplant.

“They are very willing to go forward with a four-out-of-six match,” Nancy said. “Rejection is less likely with stem cells from cord blood.”

Umbilical cord blood has not been exposed to antigens or built up antibodies like adult blood, she said.

One cord contains only a few ounces of blood. But volume is not as important as the concentration of stem cells, Nancy said.

While the procedure is the same, it will take two to four weeks longer for these stem cells to grow in Sam’s body than in a traditional bone marrow transplant.

“They are starting from scratch,” Nancy said.

The transplant itself is painless, much like getting a blood transfusion. The preparation, however, is grueling. That’s what Nancy fears, knowing what her daughter is about to endure.

During a week of heavy chemotherapy and radiation, doctors will attempt to destroy anything in Sam’s body that could reject her new stem cells.

Waiting and praying

That means stopping just short of organ failure, Nancy said.

When her body is in the “lowest possible state,” Sam will receive her new stem cells, Nancy said.

“Then, we wait. And we pray,” she said. “And pray and wait, and wait and pray.”

Pray that no infection sets in. Pray that Sam’s body does not reject the foreign cells. Pray that the cells do their job to create new bone marrow, the only hope to save this little girl’s life.

They won’t know for 25 days if the stem cells are growing, Nancy said.

When Sam enters the Duke University hospital in mid-October, she will live in almost complete isolation. Only doctors, nurses and one parent at a time may enter her room.

“She just about has to live in a bubble because there is such a high risk of infection,” Nancy said.

A nurse will screen Nancy and Ken for illness each time they enter Sam’s room. They must scrub thoroughly and may have to wear surgical masks.

Most transplant patients live in the hospital for 50 days.

“Then, we get her well again,” Nancy said. “We will have to start from ground zero with all that growing in her, we’ll have to get her body back again and get her through a lot of side effects.

“When we take her home, she’ll still be on an IV. No visitors for months, since we will have to keep her away from any chance of infection.

“Every kid reacts differently, but we’ll be concerned about infections for at least a year.”

Sam’s been home in Salisbury with her parents and brother Matt, 3, for three weeks. She’s lost her hair, suffered severe side affects and at one point, dropped to 29 pounds.

But now she’s in remission and gaining weight.

“She’s up to 33 pounds,” Nancy said. “We are rejoicing in her chubby cheeks.”

They travel to Winston-Salem once a week for chemotherapy, and Sam has named her IV pole “Alice.”

“She dances up and down the hallway with it,” Nancy said. “She’s still a child, and despite what they’re going through, children find their way of bringing sunshine into their life.”

Doctors will not make any predictions about Sam’s future, Nancy said.

“With Sam, it will be very difficult to give any kind of percentage, when you’re dealing with something very rare,” she said.

Nancy was driving Sam to an art lesson in July when a feeling that “something just wasn’t right” came over her.

Sam hadn’t been eating well and had suffered several bouts of strep throat throughout the summer. Before going in, Nancy looked in Sam’s throat.

“I couldn’t believe it,” she said. “It was a mess in there.”

Test was negative

She took her to Salisbury Pediatric Associates, where the strep test came back negative.

“Her blood work was showing something like mono,” Nancy said.

Her throat was swelling dangerously, and doctors could have given her a steroid to control it, Nancy said.

Wisely, they did not.

“Prednisone would have masked (leukemia), and we wouldn’t have known for a month,” she said. “And that would have been too late.”

Dr. Kathy Russo, Dr. Wayne Koontz and Dr. Mark Lins patiently but quickly ruled out possibilities. Finally, they sent Sam to experts at Brenner Children’s Hospital in Winston-Salem.

“The doctors here did so well. They got us up there very early,” Nancy said. “This grew very fast.”

Hours after arriving at the children’s hospital, Sam received her first chemotherapy treatment.

She was diagnosed with acute lymphocytic leukemia, the most common form of the disease for children. Nearly 80 percent survive.

“We were thinking, ‘We can handle this leukemia thing and two years of chemotherapy,’” Nancy said. “Then we found out about that other factor.”

Doctors discovered that Sam’s blood has the Philadelphia Factor and other unique characteristics that make her leukemia extremely rare. Chemotherapy and radiation would not beat the disease, they told the Washkos.

Sam must undergo a bone marrow transplant to survive.

“Just when you think you’re OK, you can deal with this, you get knocked back down again,” Nancy said.

Doctors can’t say why Sam suffers from such a rare illness. They don’t know how long the cancer has been in her tiny body.

“But when it started to spread in the lymph system, that happened within a matter of days,” Nancy said.

She’s had two surgeries, one to insert a catheter and another to drain fluid from her lungs. When Sam lost her long, chestnut hair, she stuffed the clumps into two plastic baggies, which she keeps. Now she has a fine, soft fuzz covering her head.

“Angel hair, we call it,” Nancy said. “She thinks her hair is beautiful right now, and it is.”

Surprisingly, that was the easiest side affect to deal with, Nancy said.

“That’s hasn’t even bothered me,” she said.

Hair falling out doesn’t hurt. But many other side affects of leukemia, and the drugs used to treat it, do.

“No one wants to see their child in pain,” Nancy said. “The worst side affects she had were in the beginning when the leukemia was still in her body. That first month was the toughest.”

Nancy and Ken braced for the second round of chemo in August and more pain. But Sam’s body surprised everyone by reacting much differently.

“There was still nauseau and vomiting, but if chemo could be peaceful, that’s the word I would use,” Nancy said.

Sam started that round of chemo on Aug. 14, the day that more than 600 people showed up at Sacred Heart Catholic Church to have their bone marrow typed in her name.

The Washkos will celebrate Halloween early this year. Sam loves to dress up and chose Snow White as her costume, a character who visited her in the hospital recently, Nancy said.

She still dances around the house and can play outside for 15 or 20 minutes at a time, Nancy said.

And she gets to eat the creamiest, cheesiest, most fattening dishes her parents can concoct.

“I’ve read every child’s cancer book to her, and she still wants to know more,” Nancy said. “I said she should be a doctor.”

Maybe someday, she will.

To learn more about Sam and how you can help leukemia patients, visit www.hopeformarrow.org , a website set up by Nancy’s sister, Cathy LaMarre.

Contact Emily Ford 704-797-4249 or eford@salisburypost.com .