A major challenge n
ow is confronting 10-year-old Lilly Vanden Bosch of Dorr, who under went a bone marrow transplant earlier this year at Helen DeVos Children’s Hospital in Grand Rapids.
Lilly’s mother, Meg, posted on Facebook. “Things have gone from bad to worse as the CMV virus has officially taken hold and is now present in Lilly’s lungs. She is back inpatient on floor 9 and is receiving twice-a-day Foscarnet. She is also getting a CMV-specific iVIG treatment in an attempt to combat it.
Last week, Dr. Ulrich Duffner told Lilly’s family about a clinical trial in New York City. It’s a chance for Lilly to zap the virus for good.
Soon Lilly and her family will travel to the Big Apple to take part in the phase 2 clinical trial at Memorial Sloan Kettering Children’s Hospital, where she’ll be infused with T-cells (a type of white blood cell) from a third-party donor.
The clinical trial, which Dr. Duffner said so far shows great promise with minimal side effects, manipulates the T-cells in a laboratory and trains them to attack the CMV virus. If all goes as hoped, the T-cells would destroy Lilly’s CMV and negate the need for twice-daily anti-viral infusions and other treatments.
“It would allow her bone marrow to take off,” Meg said. “Certain viruses live in your body and they don’t ever really go away. The body just suppresses them. If the virus level gets too high it can cause really nasty problems. We have to get rid of that virus. If this clinical trial can break through that cycle, it could really speed things along.”
The family is expected to be in New York for three weeks of outpatient trial treatment.
Lilly was diagnosed more than two years ago with aplastic anemia, a rare blood disease that can be life threatening. She had a recurrence, which prompted the transplant.
The daughter of Tom and Meg Vanden Bosch, she has been in the hospital and faced a long period of isolation in her battle against a disease in which doctors say her immune system is attacking her bone marrow cells.
“On Easter we were able to enjoy some time with family and be outside in the sun, which gave us a much needed break from all things medical,” her mother posted. “Unfortunately, those escapes have only amounted to brief glimpses of ‘normal’ on Lilly’s transplant timeline.
“Now she is weak, not eating well, and her blood counts are all down as a result of all this fighting, which of course makes her situation that much more precarious.”
According to the Mayo Clinic web site, “Cytomegalovirus (CMV) is a common virus that can infect almost anyone. Most people don’t know they have CMV because it rarely causes symptoms. However, if you’re pregnant or have a weakened immune system, CMV is cause for concern.
“Once infected with CMV, your body retains the virus for life. However, CMV usually remains dormant if you’re healthy.
“CMV spreads from person to person through body fluids, such as blood, saliva, urine, semen and breast milk. CMV spread through breast milk usually doesn’t make the baby sick. However, if you are pregnant and develop an active infection, you can pass the virus to your baby.
“There’s no cure for CMV, but drugs can help treat newborns and people with weak immune systems.”
PHOTO: Lilly Vanden Bosch and her mom and dad.
