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After two stem cell transplants and several rounds of chemo, ‘now he’s just like a normal 2-year-old’

When Shannon DeAndrea saw a knot on her 18-month-old son’s head last July, she thought he had just fallen.

But more popped up and wouldn’t go away. He also began feeling sick.

“I finally decided he needed to see a pediatrician,” said DeAndrea, who lives in Blairs.

She was told he had ear infections and her son, Nathan, was put on rounds of antibiotics. The knots were normal, she was told.

Another medical provider said he looked anemic. Blood work revealed his hemoglobin was dangerously low.

“We ended up in the ER,” DeAndrea said. “They couldn’t figure out why he was anemic.”

Shannon and Nathan were sent to Roanoke, where he was diagnosed with a stage 4 neuroblastoma on Aug. 23. He had a tumor in his abdomen that spread to his bone marrow. He had spots on his skull, ribs and spine.

Neuroblastomas are cancers that begin in early nerve cells of the sympathetic nervous system, according to the American Cancer Society.

Since his diagnosis, her son — now 2 — has had several rounds of chemotherapy and two stem cell transplants and is doing well.

“Now he’s just like a normal 2-year-old,” DeAndrea said. “He’s running around with his sister. He’s eating well.”

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Dr. William Clark is associate professor of medicine and attending physician at Virginia Commonwealth University Massey Cancer Center Stem Cell Transplantation Program. Clark said the procedure is used for conditions including multiple myeloma, lymphoma, sickle cell anemia and leukemia.

Stem cell transplants are used to replace bone marrow that has been destroyed by cancer or destroyed by the chemo and/or radiation used to treat the cancer, according to the American Cancer Society.

High doses of chemo (sometimes along with radiation), work better than standard doses to kill cancer cells.  However, high doses can also kill the stem cells and cause the bone marrow to stop making blood cells, which are needed for life. The transplanted stem cells replace the body’s stem cells after the bone marrow and its stem cells have been destroyed by treatment, according to the American Cancer Society.

Two types of stem cell transplants include autologous, which uses stem cells from the patient’s own body, and allogeneic — using stem cells from another person, Clark said.

For leukemia patients, “most of the time, we give them stem cells from someone else,” Clark said. Chemotherapy helps lower the leukemia disease burden, but the new immune system provided by the new stem cells can fight against the cancer cells and get rid of them, he said.

Virginia Commonwealth University’s cancer center performs an average of about 160-195 stem cell transplants per year, Clark said. Slightly more than half are autologous procedures, and the rest are allogeneic, he said.

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Whitt Clement, former delegate who represented the Danville area in the General Assembly, underwent a stem cell transplant for acute myeloid leukemia in September 2015.

The most important aspect for patients is being self-aware and their own best advocates, Clement said.

“My experience was that the patient has to ask a lot of questions throughout the process,” he said.

He suspected something was wrong when he noticed his platelet count declining over seven years. He went to a hematologist and had a bone marrow biopsy that revealed his condition.

“If I had not taken the initiative myself and gone to see a hematologist, matters would have progressed to the point where I would have been symptomatic,” Clement said.

Finding the perfect match in a donor is also important, Clement said. Fortunately, he had a sibling who met all the criteria and donated stem cells.

A person can get great matches from unrelated donors, but it’s preferable for a donor to be a sibling, said Clement, partner at Hunton & Williams law firm in Richmond.

“Your body has an easier time tolerating the new stem cells,” he said.

Clement served in the Virginia House of Delegates from 1988-2002, and as Virginia’s secretary of transportation from 2002-2005 under Gov. Mark Warner.

For someone with multiple myeloma, the transplant does not cure the disease but delays the time it returns — by up to seven and a half years, Clark said.

Lymphoma, leukemia and sickle cell anemia can be cured with the procedure, Clark said. Lymphoma can be cured in about 50 to 80 percent of cases, depending on the lymphoma, Clark said.

 The first 30 days after the transplant are the most critical, Clement said. During that time, different organs can have varying reactions to the new cells. It can affect the kidneys, liver, gastrointestinal tract, skin, and cause other side effects.

“The idea is that the closer the match, the less likely you’ll have those adverse reactions,” he said.

The process includes being put on an immunosuppressant to prevent the immune system from attacking the new cells, Clement said.

He credits the quality of his recovery to asking lots of questions and being his own advocate — tape recording conversations with medical providers, coming in with written questions.

“I’ve been able to recover better because of that,” he said.

“It’s a long journey and so a person confronted with the transplant situation has got to prepare himself for a long journey that requires a lot of questions along the way,” Clement said.

There are about 20 million potential stem cell/bone marrow donors in the BeTheMatch Registry in the United States, Clark said.

Stem cell transplants began in the late 50s/early 60s with the first successful procedure done in an identical twin, Clark said. However, stem cell transplants were limited until medicines that prevent rejections became available.

The number of procedures increased in the 1980s, Clark said.

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Danville resident Susan Mathena, cancer patient navigator at Danville Regional Medical Center, became a donor about 20 years ago because she wanted to help people. Mathena has also been an organ donor since she got her driver’s license.

“I see patients all the time that need stem cell transplants,” Mathena said. “We always need a source of bone marrow donation.”

Though she will age out of the stem cell donor list soon, she could still be contacted if she is the only match for someone in need, she said.

Clark will speak next month on stem cell/bone marrow transplants at Ballou Recreation Center at an event held by the Cancer Research and Resource Center of Southern Virginia in Danville.

“Thousands of patients with blood cancers like leukemia or other diseases like sickle cell anemia need a bone marrow/stem cell transplant to survive, including some of our own community members,” said Kate Stokely Powell, coordinator at the center.

Clark’s presentation offers an opportunity in Southside for people battling illness, medical students and professionals and the public to learn from an expert in the field of stem cell transplants, Powell said.

Doctors, hospitals and families affected by a blood cancer disease have done a great job of building a massive database of blood types for potential donor matches, Clement said.

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For DeAndrea and her son, Nathan, the first transplant included four or five days of chemo. The new stem cells — following the chemo that killed off his old stem cells — from the transplant were like a rescue, she said.

“It’s wiping you out and then giving you your cells back to restart your immune system,” DeAndrea said.

A second round of heavy chemo was to try to kill what was left of the cancer and replenish cells, she said.

“It was rough, it was a nightmare,” DeAndrea said. “It was by far the worst phase of his treatment, but I believe, in the long run, it’s worth it.”

She said the procedures should increase Nathan’s chances for survival and prevent a relapse.

Nathan just finished radiation Tuesday and will go in for a biopsy of his bone marrow this week, DeAndrea said.