Lilly Vanden Bosch is a talkative 13-year-old, who feels comfortable discussing her six-year battle with a rare form of anemia, her treatments, her bone marrow transplants and her recovery.
She’s not shy in front of her doctors, her teachers or strangers.
But a person she encountered recently left her searching for words.
“What do you say to the person who saved your life?” said Lilly, a seventh grader at St. Stainislaus School in Dorr, Michigan.
The “person” is Lilly’s bone marrow donor from Germany. Her name is Sandy Dobbs.
I’m healthy, I have a lot of bone marrow left and gave it to a person who needed it very badly …I would donate it for my Lilly 1 million times. If she needs me again, I’m here. Sisters hold together.
Of all the gifts under Lilly’s Christmas tree, the gift from Dobbs several years ago means the most.
Diagnosed at age 7 with aplastic anemia, Lilly knew she’d need a bone marrow transplant in order to live a full life.
But the donor registry didn’t turn up a single person in the United States who would be a suitable donor. In fact, out of the 23 million-plus people on the registry, only one registered a 10-point match—Dobbs.
At that time, Lilly and her family didn’t know anything about Dobbs. All they knew was that her stem cells were being shipped overseas from a European donor.
“The cells arrived in a bag, similar to a bag of blood that she was used to receiving,” said Lilly’s mom, Meg Vanden Bosch. “It was really an easy process on Lilly’s end.”
After a successful transplant, another obstacle stumbled into Lilly’s life. A CMV virus threatened the function of Lilly’s new bone marrow because of the antiviral medications needed to keep the virus in check. The medicines prevented her bone marrow from developing like it should, which suppressed her immune system.
She couldn’t risk being in crowds. She couldn’t shop. Couldn’t play with friends. Couldn’t eat fresh fruit or drink well water. Couldn’t dine out. Couldn’t go to school.
Her immune system was so compromised, she spent Christmas 2015 on the ninth floor of Spectrum Health Helen DeVos Children’s Hospital.
At the encouragement of Ulrich Duffner, MD, director of clinical services for the Pediatric Blood and Bone Marrow Transplant Program at Helen DeVos Children’s Hospital, Lilly and her family participated in a promising clinical trial.
In the trial, Lilly received manipulated T-cells, which were trained in a lab to attack the CMV virus. The gamble paid off. The CMV virus disappeared.
But Lilly’s body needed a boost. She was tired, weak and sick. When asked, Dobbs readily agreed to donate a second round of cells that Lilly received in May 2016.
“The combination of third-party T-cells and Sandy’s second donation finally did the trick,” Meg said. “That’s when Lilly turned the corner. No more viruses, no more transfusions, her body was finally able to thrive.”
‘Lilly is my sister’
The Vanden Bosch family wanted to thank the donor who saved Lilly’s life. But donor registry rules require a two-year waiting period before disclosing donor information.
Last May, the Vanden Bosches learned the name and location of their donor. Lilly’s sister looked her up on Facebook. Dobbs is a 32-year-old nurse living in Southern Germany.
“We started messaging her on Facebook,” Lilly said. “Now, we message almost every day. I just had my birthday in November and she sent me a few gifts. She sang Happy Birthday to me in her best English.”
Meg and Lilly learned Dobbs worked for a doctor who encouraged all his employees to be on the donor registry.
“It’s really cool that you can message with the person who saved your life,” Lilly said. “She’s halfway across the world.”
Dobbs lovingly refers to Lilly as her “genetic sister.”
“I’m so thankful that I’m in touch with Lilly and Meg, sharing photos and writing at least two to three times a week,” Dobbs said. “When I saw the video where Lilly received my marrow, I cried like a baby. For me, Lilly is not anyone. Lilly is my sister.”
Dobbs said she is thankful she had the opportunity to help Lilly, and hopes to meet the family in Michigan someday soon.
“I’m healthy, I have a lot of bone marrow left and gave it to a person who needed it very badly and cannot get it in the supermarket,” Dobbs said. “I would donate it for my Lilly 1 million times. If she needs me again, I’m here. Sisters hold together.”
Back to living
Lilly said she’s “feeling great” these days. Her four to five times a week visits to Helen DeVos Children’s Hospital are down to once a month.
She’s playing sports—volleyball, basketball and swimming—and rejoicing in every moment.
“Everything is back to normal,” Lilly said. “I’m going to school every day. The only thing that’s a little different than a normal kid is my immune system is like a 3-year-old’s. I get sick with a lot of colds.”
Lilly said she’s thankful for life, and she now has her donor to share it with.
But in some ways, Lilly said adjusting is difficult.
“It feels great, but it’s a little bit weird because (hospital life) was my normal,” she said. “It was my everyday life, something my life revolved around. That’s why I like going down to the hospital every month—not for the poke, but to remember everything. Being sick isn’t fun, but they made it a better experience.”
Dr. Duffner is happy Lilly and her donor have made a meaningful connection.
“For the recipient and her family, it is possible to say ‘thank you’ to somebody who was willing to donate bone marrow to a patient in need,” Dr. Duffner said. “For the donor, it is great to see how the recipient can live now with the donor’s blood cells. Having the circle closed can be a great motivator for other people to become a potential bone marrow donor.”
Without the donor match, Lilly would have faced an uncertain future, full of many blood transfusions and restrictions. Currently, she visits Helen DeVos Children’s Hospital monthly to remove extra iron from her blood.
“She is doing great,” Dr. Duffner said. “She continues to visit our long-term follow-up clinic, but with all the time that has gone by since the transplant, the risk for a serious complication is now very, very low.”