Active Middle-Schooler's Life Sidelined by Severe Aplastic Anemia - Phoenix's Story

Cheer, music, sports, plays, community.  These dominated Phoenix’s life in the autumn of last year.

Winter break brought a different message. Petechiae and bruising led to a visit to the pediatrician. The message when they took her blood was, “You’ll hear from us in about 5 days.”
The phone rang the next morning with the message, “She’s in critical condition, take her to the Emergency.”  

So began Phoenix’s journey with Severe Aplastic Anemia. With her mom by her side, family and community helping, she discovered her way through rigorous treatment.

Laura was a passionate mom. She managed her career and involvement in her girls’ activities. The rural community of northern California was a small but tight-knit home for their family.  Phoenix was a creative, intelligent girl: writing music, skateboarding, and surfing, like many active 12-year-olds.  When the fatigue, massive bruising, and petechiae began, both mother and daughter were puzzled by these symptoms. 

Phoenix was admitted to the hospital. She had four bags of platelets and 4 bags of whole blood in those five days. The diagnostic team was looking at leukemia as a possibility, but they did not come to a diagnosis during this admission. When she was discharged, she had to return every 48 hours for platelets and every four days for blood. 

The testing and diagnosis took months to sort out.  Finally, the diagnosis was Severe Aplastic Anemia. Phoenix’s second bone marrow biopsy showed under 10%! The specialists gave her options for treatment.   ATG, Bone Marrow/Stem Cell Transplant, Immunosuppressive Therapy, or a Clinical Trial were all offered to her. By this time, they knew that her younger sister would not be a match.  She decided she wanted to have a more permanent solution, so she wanted to have a transplant, and Laura agreed.

Laura decided that having a second opinion was the best way to ensure the best treatment for Phoenix.  They drove farther away, to a program known for its transplant expertise, with an introduction from a mutual friend.  Deciding to have treatment far from home would be a challenge, but they carried out the details by having so many good people in their community helping them. Three families let them stay in their “city” homes, and Phoenix’s aunt and uncle took in Nova, her sister, for the duration of treatment.  The community rallied around the family to do all they could to ease the challenges of long-distance treatment.

While in the hospital, Phoenix decided to ramp up a bracelet-making business.  She posted the options on the glass door of her hospital room, then received orders. She made them while in the hospital bed, fighting the boredom that goes with isolation.  The goal was to earn at least $400 for an e-bike, but she earned enough to purchase the e-bike outright.  Making these bracelets gave her a goal and a focus during isolation, and meeting her goal gave her an accomplishment during this time.

Nova, Phoenix’s younger sister, felt left behind and left out.  Her mother and sister were far away, and she wasn’t staying in her hometown, but enrolled in the same school as her cousin.  It was a difficult time for her, as well, missing her family and her home community.

Laura describes the love and care from the community that they received. Neighbors came to visit them, making the long drive just to see them. When in isolation at home, they brought home-cooked meals. They even held a fundraiser for them before the transplant, helping the family through this time when Laura was staying with Phoenix and not earning income. She says, “They carried us through” with all the love and support they gave.

When asked what advice Laura would have for other parents of pediatric patients who have treatment for Severe Aplastic Anemia, she recommends learning how to accept help.  “Rely on your community,” she says. It was hard at first for her to accept the help, but she learned that the stress of carrying everything was not necessary.  “Let yourself receive the love.”

Phoenix has her own advice for other patients like herself.  “It’s really scary, but you will get through it, no matter what!”