Lilly’s encouraging story told by Spectrum Health publication

Lilly Vanden Bosch's fight with aplastic anemia has included radiation, chemotherapy, a successful bone marrow transplant and clinical trial treatment for a CMV virus. (Chris Clark | Spectrum Health Beat)
Lilly Vanden Bosch’s fight with aplastic anemia has included radiation, chemotherapy, a successful bone marrow transplant and clinical trial treatment for a CMV virus. (Chris Clark | Spectrum Health Beat)

The latest Spectrum Health Beat publication includes a feature story about Lilly Vanden Bosch, the 10-year-old Dorr girl who has been battling aplastic anemia and a virus.

Lilly, daughter of Meg and Tom Vanden Bosch, underwent a bone marrow transplant just after Thanksgiving last year and then developed a CMV virus that complicated matters and made the situation worse.

The Spectrum feature story reported, “A clinical trial in New York City that Lilly recently participated in appears to have slain the monster, leaving it gasping and gurgling for breath. Instead of Lilly dying, it is… Lilly is getting close. So close to being a regular kid again, to being able to play with friends, eat in restaurants and return to school.”

The virus threatened the function of Lilly’s new bone marrow because of the antiviral medications needed to keep the virus in check. The medicines prevent her bone marrow from developing as it should, which suppresses her immune system.

Lilly couldn’t risk being in crowds, couldn’t shop swim, eat fresh fruit, drink well water, dine out or go to school.

The Spectrum story said that at the encouragement of Dr. Ulrich Duffner, director of clinical services for the Pediatric Blood and Bone Marrow Transplant Program at Spectrum Health Helen DeVos Children’s Hospital, Lilly and her family traveled from their home in Dorr to participate in a promising clinical trial at Memorial Sloan Kettering Children’s Hospital in New York City.

The story reported, “…the clinical trial treatment appears to have whacked the stubborn CMV virus out of Lilly’s body. Doctors there infused her with T-cells (a type of white blood cell) from a third-party donor. The clinical trial manipulated those T-cells in the laboratory and trained them to attack the CMV virus.

“Sound sci-fi? Perhaps. But it appears to have worked.”

Dr. Duffner now weaning Lilly off her antiviral medications, which should allow her internal immune system to function properly.

Meg Vanden Bosch, Lilly’s mom, “We’re very happy with how Lilly looks.”

Dr. Duffner said. “We’re confident this is going in the right direction and we can stop more and more of her medications.”

Her counts are coming back to normal, said Aly Abdel-Mageed, MD, section chief for the pediatric blood and bone marrow transplant program at Helen DeVos Children’s Hospital.

Lilly’s three visits to the children’s hospital each week are now down to two, and soon even fewer visits will be necessary.

She wants to go back to St. Stanislaus School in the fall.

 

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