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Patient & Caregiver Stories

“It’s important to elevate awareness of narcolepsy so that other people experiencing symptoms don’t spend years feeling embarrassed, misunderstood, and alone and can start on a path to better understand their symptoms.”
Did you know it is estimated that more than half of people living with narcolepsy don’t even know they have it?

Major Symptoms of Narcolepsy
  • Excessive Daytime Sleepiness
  • Cataplexy
  • Disrupted Sleep
  • Sleep Paralysis
  • Hypnagogic Hallucinations

Willow’s Story

Willow was an active, busy 5-year-old who loved drawing, swinging outside, riding her scooter and playing with her family’s dogs and cats. She was also a very healthy child from birth, so when she started losing her appetite, her mother, Valerie, a licensed practical nurse, thought it was simply that she was playing a lot and didn’t want to stop and eat. While planning for a family camping trip, Valerie also noticed bruises on Willow’s legs. Figuring that her daughter was just playing a little rough at the playground and perhaps her iron levels were a little low, Valerie scheduled a visit with the pediatrician for when they returned from their trip.

Willow seemed a little tired during the camping trip, and when they got back a few days later, she started feeling sick and developed a high fever, and Valerie noticed that the bruises had spread from her legs to across her chest and neck. Valerie called Willow’s pediatrician, who suggested they take her to urgent care for testing and bloodwork. The next day, the urgent care physician called Valerie at work and told her that Willow’s platelet count (platelets help with clotting) was critically low and that some of her other bloodwork was also concerning. The doctor confirmed it was an emergency situation and that the family needed to get Willow to the emergency room (ER) as quickly as possible. At the ER, the medical team did additional bloodwork and, very quickly, told them she needed to be flown to Children’s National Hospital in Washington, DC, about a two-hour drive from their home.

“While no one said the ‘C’ word, I think I knew at that time,” recalls Valerie. “As a nurse, I had that panic in the back of my mind, but I didn’t really allow myself to think that that’s what it could be, because Willow is my daughter, and that’s not what I wanted it to be.”

They flew Willow to Children’s National that night and completed another round of bloodwork. At around midnight, the medical team pulled the parents into a room and delivered the devastating news – Willow had acute lymphoblastic leukemia (ALL), the most common type of childhood cancer.1

ALL is a cancer of the blood and bone marrow that can progress quickly if not treated.2,3 In the U.S., approximately 75% of people under age 20 diagnosed with leukemia are diagnosed with ALL. Most cases of ALL occur between ages 2 and 5, although it can be diagnosed at any age.1 The five-year survival rate for children aged 0 to 14 with ALL is 92%,1 although survival rates vary based on several factors, including the ability to maintain a full course of foundational treatment.4

Willow’s family met the oncology team the next morning to discuss a treatment plan. As part of the first phase of treatment, Willow was immediately started on multiagent therapy and blood transfusions. Although she spent the next month at the hospital, followed by regular visits to Children’s National to receive subsequent rounds of chemotherapy, Valerie felt Willow’s treatment was going pretty smoothly – that is until the second phase. This phase, known as “delayed intensification,” involves more intense chemotherapy when the amount of leukemia cells is very low in order to destroy the small, undetectable number of cells.5 During this phase of treatment, Willow had significant pain in her legs, arms and other areas of her body, and she also experienced an allergic reaction to one of the medications that was considered a foundational ALL treatment.

Hoping to keep Willow’s treatment on track, her medical team discussed an alternative treatment with the family that had recently been approved by the FDA.

“I was aware that there was another option for Willow and was very grateful knowing that there was an alternative to the medication she was allergic to,” shares Valerie. “It’s really hard to watch my daughter go through the chemotherapy, but I know that, ultimately, it’s saving her life. You don’t have a choice when your child has cancer.”

Fortunately, Willow was able to receive her full dosing regimen of the new treatment without any further issues. The treatment protocol for ALL typically lasts a total of two years, and it is unusual for ALL to return if there are no signs of the disease within five years after treatment.6

Willow is now 7, and her ALL is in remission. She has a very good prognosis, but after this experience, the entire family knows there are still many hurdles to clear. They remain incredibly positive and want people to know there is a story behind every person going through a cancer journey. They are grateful there was an alternative treatment option available to help their daughter because, without it, they don’t know what her chances would have been.


  1. American Society of Clinical Oncology. Cancer.Net. Leukemia – Acute Lymphoblastic – ALL – Childhood: Statistics. 2023. Available at Last accessed August 2023.
  2. National Cancer Institute. Adult acute lymphoblastic leukemia treatment (PDQ®)–Patient Version. 2021. Available at: Last accessed August 2023.
  3. National Cancer Institute. Childhood acute lymphoblastic leukemia treatment (PDQ®)–Patient Version. 2022. Available at: Last accessed August 2023.
  4. Phuong JM, Penm J, Chaar B, Oldfield LD, Moles R. The impacts of medication shortages on patient outcomes: A scoping review. PLoS One. 2019 May 3;14(5):e0215837.
  5. American Cancer Society. Treatment of Children with Acute Lymphocytic Leukemia (ALL). 2019. Available at: Last accessed September 2023.
  6. American Cancer Society. Living as an Acute Lymphocytic Leukemia (ALL) Survivor. 2018. Available at: Last accessed August 2023.