After his daughter lost her battle with a rare form of cancer in January 2019, Mark Pearson is using social media to raise awareness of her story and honor her legacy.

Brooke Pearson, who was 14, was diagnosed with leptomeningeal disease (LMD) in September 2018. LMD is a rare and insidious complication of cancer in which the disease infiltrates the fluid around the brain and spinal cord. It is usually terminal, with most patients living only a few months after diagnosis, according to the University of Texas MD Anderson Cancer Center.

“She was the healthy one of the family. She hadn’t missed a day of school in five years,” said Pearson. 

Brooke’s symptoms began in March 2018 with numbness in her left hand. When discomfort moved to the upper right side of her body, doctors suspected a pinched nerve and prescribed physical therapy. But excruciating pain traveled to her left leg, suggesting something more serious.

After seeing a neurologist, Brooke underwent 16 hours of MRI imaging and a lumbar puncture, which revealed multiple lesions on her spine.  

“The surgery was done the day after Mother’s Day,” Mark Pearson said. “She came out of the surgery, and the neurosurgeon pulls us aside and says it’s malignant and very aggressive. Our lives changed at that point.”

After getting additional opinions at other hospitals, the Pearsons decided to move forward with treatment. But the cancer didn’t respond, and over the course of her treatment, Brooke became immobile, blind and epileptic as the cancer continued to spread and impeded the flow of spinal fluid to her brain.  

Looking back, Pearson said he wishes they had received spinal cord and brain MRIs immediately, and advised others who suspect LMD to do the same: “Don’t even wait.”

As he did during Brooke’s cancer battle, Pearson is using his Facebook page Team Brooki to connect with caregivers of patients with LMD and exchange information.

Pearson hopes to write a book about Brooke and LMD, and to create an audio version that features patient stories. Its goal: to raise awareness of LMD.

“There are a lot of people who have it but there aren’t a lot of survivors,” Pearson said, “and in order for their stories to continue, it’s up to their caregivers, so I’m hoping I can keep talking to people.”