All Lacey Horwitch wants for her birthday is to go home.
The 8-year-old from Northbrook, who turns 9 on Jan. 19, has spent the last several months in a hospital bed, undergoing rounds of chemotherapy, surgery, and ultimately, a bone marrow transplant.
“She is a little fighter, she does not cry, she does not complain,” says Amy Cassman, a close relative. “This kid is amazing.”
Lacey has been hospitalized at Comer Children’s Hospital at the University of Chicago since August, when she was diagnosed with hemophagocytic lymphohistocytis (HLH). The rare disease causes her immune system to attack her own organs and the cells that produce blood in her bone marrow.
On Dec. 29, Lacey received a bone marrow transplant from her father, David. It will be three weeks before doctors can tell whether the transplant has worked—but for now, her parents are praying that this will help Lacey get better.
“There still is a chance that Lacey will need another bone marrow transplant,” says David. “We’re hoping that’s not the case.”
Lacey Is A Gracious Kid Who Loves To Dance
Before she got sick, Lacey loved dancing and made the dance team at Northbrook’s studio. She enjoys being outdoors, likes craft projects and has a fascination with superheroes—particularly with the concept of superpowers. Her favorite superhero is the DC Comics warrior princess Wonder Woman, says David.
Along with her sisters, Maya, 11, and Jenna, 6, Lacey attended District 30 schools. Because Lacey was having issues with a learning disability, her parents decided to enroll her in last year, where she would have started third grade this fall.
But in August, Lacey suddenly fell ill. She told her parents that her stomach hurt, and “kept randomly throwing up,” says her mom, Laura. At first, Laura and David believed it was a virus, but when Lacey didn’t get better after a week, they took her to their pediatrician at Advocate Lutheran General Hospital. He told the Horwitches that Lacey was in liver failure, and she was transported to Children’s Hospital by ambulance that same day. She was in and out of the hospital for eight weeks before doctors could diagnose her rare condition, according to Laura.
“Just a few months ago, she was a normal kid at camp, and wasn’t afraid to get dirty, and loved Chuck E. Cheese, and was going to start third grade,” comments Laura’s cousin, Amy.
Since August, Lacey has spent more than 100 days in the hospital as her illness has grown progressively worse. While HLH is not a type of cancer, the symptoms and treatments are similar. Doctors first tried to treat her with chemotherapy, but the drugs made her white blood cell counts drop to dangerously low levels, and she developed an infection on her arm that was so serious doctors had to do surgery.
Finally, at the end of November, doctors decided to pursue a bone marrow transplant in hopes of reversing the course of Lacey’s disease. David, Laura, Jenna and Maya all got tested. None were an exact match, although David’s bone marrow was a 50 percent match—meaning there was a risk that Lacey’s body would reject it. For weeks, local congregations and schools held bone marrow drives as the Horwitches prayed that someone would turn out to be a close match.
“We had drive after drive,” says Amy. “I had no idea it was so incredibly hard to find a match.”
The drives did lead to bone marrow matches for two other people, one of whom is an infant. Frustratingly, the national bone marrow registry also indicated that there was a match for Lacey—but the donor’s information was not up to date. And by December, Lacey had gotten so weak and her white blood cell counts had gotten so low that her doctors decided it was worth trying her father’s bone marrow.
“The process of donating was easy,” says David. While a transplant used to require a more invasive, surgical procedure, doctors simply hooked David up to an IV, as with a blood donation. They removed blood from his arm, sent it through a machine similar to a dialysis machine to remove stem cells, and then sent it back into his body through an IV in his other arm.
“It wasn’t a big deal,” he says. “I was in and out in a few hours.”
Getting tested for the national bone marrow registry is even easier, David notes—all it requires is swabbing the inside of your cheek. In fact, anyone can sign up to have cheek swab kit sent via mail on the registry website.
Lacey has wanted to get out of the hospital for months—she feels stir crazy inside and misses her sisters. When she was feeling better, she watched TV during the day and made bracelets and other art projects. But as she has grown sicker, she has spent more and more time sedated. Recently, she woke up from being on a ventilator for three weeks before and after the transplant, unable to hear. Doctors say the hearing loss is likely caused by neurological damage from her disease.
“She’s pretty upset, traumatized a bit, and not understanding what’s going on, because she can’t hear anything we can say,” says Laura.
Throughout it all, however, Lacey has retained her good manners and gracious attitude.
“Everything starts with ‘please’ and ‘thank you,’ and when she forgets her manners, she apologizes,” says Amy.
Illness Has Tested the Family; Community Has Responded
Lacey’s illness has been a stress not just on her but on her family as well.
“Our girls, Maya and Jenna, haven’t seen Lacey in almost three months,” says Laura. “We’re back and forth at the hospital every day. They’re at a house they’ve lived in their whole lives and their sister’s not there, and they’re struggling to understand what’s going on.”
Although Lacey’s illness has taken an unimaginable toll on the family, Laura says it’s the support of the community that has helped make it bearable.
“It’s just unbelievable to me how kind and generous the community has been and what they’ve been willing to do for our family. And I’m not minimizing how horrible this has been for us as a family, and especially for Lacey,” says Laura. “If you were in a place where you didn’t have these kind of people and everyone reaching out to support you, I don’t know how you would handle this.”
Community members and local congregations have organized countless bone marrow drives, including one at on Sunday, the synagogue Laura has been attending since she was a little girl. And DancEd, the school where Lacey took dance lessons, is hosting a fundraiser to help support research into her condition on Sunday, Jan. 22.
“The community support has been truly amazing,” says David, who grew up in Deerfield. “So many of [my classmates] came to the prior drives to see if they were a match.”
For Now, Horwitches Pray That This Transplant Grafts
Although Lacey’s doctors are cautiously optimistic about the bone marrow transplant, there are still a lot of uncertainties in her future. Before the transplant, Lacey had no white blood cells at all, meaning she was unable to fight infection. Now, they are gradually coming back. But she’s still very susceptible to viruses. As David explains it, Lacey is almost like a baby with his bone marrow—she must develop all her immunities all over again.
Because her white blood cell count was so low for so long, Lacey now has two serious infections on her arm and her back. Eventually, doctors say she will need surgery on the wounds, but they’re waiting to see how she recovers from the transplant.
Complicating it all is the recent hearing loss. Doctors hope they’ll eventually be able to address that issue, but for now, it’s one step at a time—and the first step is getting Lacey’s white blood cells back to normal.
The Horwitches are continuing to hold drives because the cause of finding bone marrow donors, even if they’re not a match for Lacey, is so important to them. After all, the right donor could save a life.
“To save one life saves the world, and that’s how her family feels,” says Laura’s cousin, Amy.
For now, the Horwitches hope that David’s bone marrow proves to be just the superpower Lacey needs. After all, Lacey is the greatest superhero they know.
“No one could believe what a fighter she is,” says Laura.