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More than 100 Missed Bedtimes


2020 has been a really tough year. Period. Full stop.

Having spent much of it confined to the hospital away from her husband and three young boys, 28-year-old Brandi knows this better than most. And yet, despite the isolation, the daily pain and utter exhaustion, the seven rounds of chemo and regular platelet transfusions—Brandi remains extraordinarily strong, and determined, and optimistic for her future.

Onset

In early February, Brandi began to feel tired. Far more tired than usual. Simple, everyday tasks like brushing her teeth or putting away groceries would leave her feeling drained and shaky. A trip across the room would cause her heart to race and her arms and legs to tingle. This was particularly jarring because she’s normally a fairly active person, who loves to spend time outside, fishing and playing with her kids. When they go to their local jump park, full of gymnastics mats and trampolines, Brandi is right there with her boys, summersaulting around. But within the blur of a couple weeks, that version of her had abruptly disappeared.

At first, it was easy to ignore or explain away. Brandi had been living with anemia for about 11 years. She suspected the fatigue and the questionable bruising she was also experiencing might be related to depleted iron levels in her body, as these are typical symptoms. “Or maybe I’m just out-of-shape,” she thought. Throw on top the daily duties of a mom of three and it’s easy to see how the warning signs could get overlooked. The exhaustion, however, only seemed to worsen. When she suddenly passed out on the walk from her garage to the kitchen, Brandi realized that something more serious might be going on. The following morning, after dropping her kids off at school, she drove over to the ER.

Blood was drawn, doctors consulted, and tests conducted. Within hours, it was determined her blood levels were very dangerously off, and a bone marrow biopsy was immediately ordered. Just a few days later, Brandi was officially diagnosed with mixed phenotype acute leukemia (MPAL), an incredibly rare and aggressive form of blood cancer. The only known cure for this disease is a blood stem cell transplant.

Lockdown

With the diagnosis came a dramatically new and scary stage in Brandi’s life. By mid-February, she was admitted to the hospital and a treatment regime began—including two different types of chemotherapy, administered through both a central (PICC) line and her spine. At the same time, Brandi was doing all she could to regain her strength. Physical therapy became a regular activity, and on her off days she would make laps around the hospital floor, greeting doctors and nurses along the way.

All of this was of course coinciding with the rapidly mounting, uncertain threat of COVID-19. Outside the hospital walls, schools and businesses were closing, workers were staying home, and everyone was on edge. Would this last a week? Two? Surely things would be under control soon. For Brandi, this meant that, as a precaution, her family wasn’t allowed to visit. In fact, she hadn’t seen them in-person since leaving for the hospital weeks before. These were, Brandi has admitted, the hardest days of her life. Although she had a tremendous support network behind her—friends, family members, neighbors and fellow-parents from school—the inability to talk to, laugh with, and hug her family was incredibly challenging. Nevertheless, when Brandi posted an update online, she’d still have a warm smile on her face and a buoyancy to her words. I’ve got this, she seemed to say.

Resurgence

The arrival of April brought wonderful news: Brandi’s doctors decided that she could return home and continue treatment as an out-patient! She was overwhelmed with emotion—it had been 52 days since Brandi had seen her family face-to-face—52 bedtimes that she had missed with her boys and 52 evening meals around the dinner table with the people she loves most.

Since then, the last four to five months have had their ups and downs. Though she has been able to spend much of this time at home, Brandi is still dragged back to the hospital regularly for additional rounds of chemotherapy and blood platelet transfusions, which she critically relies on.

For patients like Brandi, the ultimate cure comes not through treatment, but from a blood stem cell transplant. Because of this, there is a strong need for donors to join the Be The Match Registry®. Patients rely on blood stem cells from individuals with near identical HLA markers (a sort of highly-specific genetic coding), and for this reason, they’re far more likely to match with someone of a similar ethnic background. Currently, Hispanic/Latino patients like Brandi have only a 46% chance of finding their match—but greater representation on the registry will increase these numbers. Learn how you could be someone’s match by joining today.

Join the Registry