Lilly Vanden Bosch’s hair is growing back in a shimmering halo of golden-brown.
Her journey to health is full of similar milestones lately. After going home following a life-saving bone marrow transplant and 50-day hospital stay, she recently crossed the “100-day” post-transplant mark.
These past few months, the 10-year-old has basked in the simple home pleasures a hospital room can’t provide—playing with her fox terrier Julio at her Dorr, Michigan, home, relaxing in front of the fireplace in her gray-and-white-sheep-print pajamas, sleeping in her own bed.
One of the biggest accomplishments in her mind? Her doctor’s OK to down a Wendy’s burger and fries.
Life is moving forward for this spirited girl who has surpassed every obstacle thrown in her path. But now she faces one last, stubborn hurdle.
A uncommon battle
Diagnosed with severe aplastic anemia at age 7, Lilly is fighting a rare battle. Only 2 out of every million people are diagnosed each year with this condition.
Lilly underwent chemotherapy and radiation prior to her November bone marrow transplant to wipe out her own immune system so it would not battle the cells being introduced from her European donor.
Her bone marrow cells continue to be 100 percent donor, which is important for the long-term success of the bone marrow transplant, said Lilly’s doctor, Ulrich Duffner, MD, director of clinical services for the Pediatric Blood and Bone Marrow Transplant Program at Spectrum Health Helen DeVos Children’s Hospital.
But a virus called CMV has settled into her body, threatening the function of her bone marrow because of the antiviral medications needed to keep the virus under control.
Instead of taking continued steps forward, the CMV virus forced her to trek back to Helen DeVos Children’s Hospital three times a week.
Sitting in a colorful recliner on the 10th floor of the children’s hospital earlier this week, Lilly waited patiently as a peach-colored bag of platelets dripped from a bag on her IV pole, through a long clear tube and into her tiny body. Two days later she would return for red blood cells.
The virus is one of several Lilly has battled since her transplant.
“A lot of transplant and cancer patients struggle with CMV,” Lilly’s mom, Meg, explained, sitting next to her daughter in front of the room’s floor-to-ceiling windows.
In recent weeks, Lilly has taken four pills and two IV anti-viral treatments every day. But it’s a catch-22. The anti-viral medicines prevent her bone marrow from developing like it should, which suppresses her immune system.
She must be careful, on-guard, like the cells themselves, for any potential immune system threats. She can’t go to school, attend church or hang out with friends.
“We don’t have a lot of people in because her immune system is still suppressed,” Meg said. “We don’t need any additional issues popping up. We have enough already.”
As Meg spoke, a nurse entered Lilly’s room to check IV levels. Lilly asked for a blanket.
The youngster wrapped herself in white warmth.
Like the warm spring sunshine that will soon coax flowers into blossom, Lilly is opening herself to a new ray of hope in this virus battle.
Last week, Dr. 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.
“You go there one day a week for treatment, kind of just like this,” Meg said, motioning to the bag hanging from Lilly’s IV pole. “You have to wait a week to get the next one. There are three rounds. We’ll have to go in every couple of days to get platelets.”
A hopeful doctor
As if on cue, Dr. Duffner entered the room and chatted with the family.
He explained that after he learned of the trial, he immediately thought of Lilly. He made some phone calls to check out the details and alerted the family last week.
“I think it’s good that we have that possibility,” Dr. Duffner said. “Like I explained to mom, the risks are pretty low. A lot of patients have seen really big improvement getting these cells. If we have that, then I think the bone marrow has a much better environment to do what it’s supposed to do.”
Although Dr. Duffner can’t predict the outcome, he is confident the new T-cells could help.
“Nothing in medicine is one plus one equals two,” he said. “It should help, but we’ll see. It really should help to stabilize her bone marrow making blood cells and get a hold on the CMV virus.”
This news was especially welcomed because the pesky virus has become resistant to the anti-viral medication Lilly’s been on to keep the CMV in check. Lilly and her mom briefly moved back into Helen DeVos Children’s Hospital while awaiting transportation to New York.
“This clinical trial came out of the blue,” Meg said. “We didn’t know the doctors here were searching for something like that. We’re just very thankful and excited that there’s something out there that could work.”