In January, the idea of the St. Louis Blues playing for the Stanley Cup seemed far-fetched considering the team was in last place. At the same time, the possibility of 11-year-old Laila Anderson being healthy enough to watch one of the games in person seemed highly unlikely. Yet as the Blues gained steam this spring, so did Laila.
Laila’s journey began two years ago when she started having episodes of headaches and vomiting. One day, she collapsed after getting out of the car to go to school.
After a trip to a St. Louis area emergency room with no resolution, Laila came to St. Louis Children’s Hospital where she had numerous tests. MRIs over the span of a few months showed her brain condition was deteriorating. Medications weren’t working and a brain biopsy still did not give a definitive answer to her symptoms. Doctors struggled to diagnose Laila’s condition.
Going Above and Beyond to Find Answers
Yet Soe Mar, MD, a Washington University neurologist at St. Louis Children’s, and Julia Warren, MD, a Washington University hematologist/oncologist at St. Louis Children’s, wouldn’t give up. “Dr. Warren said she couldn’t get Laila out of her head so she kept digging,” says Laila’s mom, Heather. “She went above and beyond—without her, we wouldn’t have figured it out.”
In September 2018, they finally found an answer through genetic testing: Laila had HLH (hemophagocytic lymphohistiocytosis), a rare, life-threatening autoimmune disease in which the immune cells grow out of control and attack the body, causing organ damage. In Laila’s case, the immune system was attacking her brain.
HLH can be difficult to diagnose because it often looks like other conditions. According to Jeff Bednarski, MD, PhD, a Washington University hematologist/oncologist at St. Louis Children’s Hospital, Laila is just one of 15 children in the world who have had a solely neurologic manifestation of the disease, which made it even more challenging to pinpoint a diagnosis.
Over the past two years, her illness has caused Laila to miss most of fourth and fifth grades. Laila’s weight has nearly doubled because of the steroids to counter her overactive immune system while she often feels nauseous. “The road hasn’t been easy,” Heather says. “And Laila isn’t always willing to admit how sick she really feels.”
Through all the health challenges Laila has faced, Heather is grateful for the St. Louis Children’s Hospital team. “No matter what, they are always there for us. They put kids first but also care for the parents. No kid wants to go to the hospital but they have been so good to her. And they don’t dismiss my questions and concerns.”
Healing Becomes a Team Sport
In October, Laila started 10 weeks of chemotherapy to suppress her overactive immune system and to prepare for a bone marrow transplant (BMT) on the quest for a cure. While she lost her long blonde hair, she found a bright spot. As an avid Blues fan, Laila met player Colton Parayko at a Halloween event at St. Louis Children’s Hospital. The two became fast friends and have stayed in close contact throughout Laila’s journey.
Laila also developed friendships with other Blues players and even had hot cocoa with Alex Steen and his family over the holidays. As another holiday celebration, her extended family, including her mom, grandparents, aunts, uncles and cousins, all attended a Blues game together with Laila where she got to ride on the Zamboni.
These special moments helped lessen Laila’s apprehension as she prepared for a BMT. Dr. Bednarski was a key player in this preparation as an expert in bone marrow transplant and in immunological disorders. While he was new to Laila’s care team, Heather trusted Dr. Warren’s opinion about him. “She told me Dr. Bednarski was the best and, on top of that, a really good person. That was enough for me.”
Dr. Bednarski is a member of the Primary Immune Deficiency Treatment Consortium, which is a network of 33 centers in North America that study the treatment of rare and severe primary immunodeficiency diseases. That includes HLH. St. Louis Children’s Hospital also is recognized as a Jeffrey Modell Diagnostic and Research Center for Primary Immunodeficiencies. This network of centers includes access to experts around the world.
Laila had a BMT on Jan. 24—“her new birthday.” “We’re extraordinarily lucky to have St. Louis Children’s Hospital so close to us. It’s a sense of relief to know it’s always there when we need it.”
SuperFan becomes a SuperHero
After her bone marrow transplant Laila spent one month in the hospital in isolation to prevent infection while her immune system rebounded.
“It’s hard to entertain a child for that long,” Heather says.
One welcome distraction was from the hospital’s music therapist, Christy Merrell. Music therapy is funded by donors to St. Louis Children’s Hospital. “Christy has a way about her and can read kids,” Heather says. “By the time Christy left, she and Laila were best friends and planning a karaoke party.”
Heather says the care team took time to truly get to know Laila to make her stay easier. “They figured out that she likes Legos so she had multiple sets to play with. She lined them up all over her room.”
Heather was also allowed to put Blues stickers on Laila’s hospital room windows. She cleaned them every day to keep the room sterile. The joy they brought her daughter made it worth it.
“When Laila is excited, I’m excited,” Heather says. “Laila has been a Blues fan since she was a little girl. It has been an unreal parallel between the team and Laila. As she started to get better, the team started to get better. The team is what gets her up every day and now those boys are sharing the moment with her. They genuinely care about her.”
The Heart of a Champion
After her month of isolation in the hospital, Laila spent another three months at home with continued restrictions. In May, as the Blues were chasing the Stanley Cup, Heather’s neighbor asked if Laila could go to a Blues game. Heather received special permission from Laila’s doctor to go with certain precautions. It would be Laila’s first excursion since her BMT. When Heather surprised Laila with the news, Laila burst into tears as she realized she would get to see her beloved Blues again.
And it didn’t stop there. A dream trip to Game 7 in Boston meant that Laila got to see “her boys” win the Stanley Cup in person—and she was on the ice celebrating with the team that had brought her so much strength and joy during the most difficult time of her life.
As the St. Louis Blues celebrate the culmination of a 52-year journey to become Stanley Cup Champions, Laila has more goals ahead, despite an unknown future. “We live one day at a time,” Heather says. “She has always been an old soul and so strong. There’s no way I could get through all she has. Laila is my hero.”