GRAND RAPIDS, Mich. (WOOD) — Lilly Vanden Bosch, 10, from Dorr will receive an IV drip of donor stem cells the day after Thanksgiving.
Lilly and her family invited 24 Hour News 8 to see her in the hospital before the intense round of conditioning treatment.
Lilly’s room has been decorated by the staff at Spectrum Health Helen DeVos Children’s Hospital since she will be in the room for weeks following her bone marrow transplant.
Unlike most 10-year-olds, Lilly is well versed in medical terms, tests and treatments.
“I hope when I get my chemo it’s not too rough,” Lilly said. “I’m going to lose all of my hair, that’s what the doctor said. I might not feel the best, I might feel tired. I might not have a huge appetite.”
The transplant itself is an IV drip.
The stem cells will be rushed to Grand Rapids from Europe in a 48-hour window.
Once the treatment is complete there’s still months of isolation ahead for Lilly and her family.
Lilly can’t return to school until next fall and she can’t be around anyone at home with the exception of her parents.
“You’re kind of a prisoner in your own home for a year,” said Tom Vanden Bosch, Lilly’s father. “You order a pizza? It’s no cut. You don’t want anybody touching it after its been prepared and she can’t eat at a restaurant because if someone’s sick and the food is being prepared and she ingest that.”
Lilly and her mother have lots of crafts and activities planned for their time together, anything to keep her busy and healthy.
Aplastic Anemia is rare. Lilly’s doctors at Spectrum Health Helen DeVos Children’s Hospital said they only see a few kids every year with the same diagnosis as Lilly.
“I’m just really excited at the thought this bone marrow transplant could be curative for her and that a year from now she can have a normal life,” said Dr. Beth Kurt, a hematologist and oncologist with Spectrum Health Helen DeVos Children’s Hospital.
Lilly and her parents are grateful to the stranger overseas who’s Lilly’s donor and hope others will sign up for the registry.
“I feel like people just don’t know until something comes up,” said Meg Vanden Bosch.
It’s free to sign up to be on the bone marrow registry through Be The Match, but you are encouraged to make a donation online.
It takes less than 15 minutes to sign up online, then Be The Match will send you a kit to your home, you swab the inside of your cheek and send it back through the mail.
Dr. Ulrich Duffner, one of Lilly’s doctors at the children’s hospital said the registries have grown to 23 million people worldwide.
He said while that number may sound large, it’s still important for people to donate.
Dr. Duffner said finding a match comes down to people with a similar race or ethnicity.
He said Caucasian patients have an 80 percent chance of finding a good match, African American patients face smaller numbers, only 30 to 50 percent chances.
Dr. Duffner said for Pacific Islanders that number shrinks to nearly 10 percent.
“I think at the moment we are trying to get more diversity in the donor registry so we have more options for future patients,” Dr. Duffner said.
Lilly hopes her story will encourage others to become a donor.
“Keep donating blood because it keeps people alive and swab yourself to see if you could be a match for someone,” Lilly said.
Parents can also decide to donate their baby’s umbilical cord blood at birth for free.
Every year Michigan Blood’s Cord Blood Bank freezes several hundred units of stem cells obtained from donated cord blood.
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