Zara Schwer likes to draw fairies. She loves horses but has not yet drawn one to her satisfaction.
The five-year-old is also the face of a new marketing campaign for St. Jude Hospital. She is a patient there, receiving chemotherapy and radiation for a tumor lodged so far into her brain that surgery could not extract it in its entirety.
As she busied herself with her markers on a recent February morning, her mother, Arpana, watched.
A parade of emotions crossed the woman's face: pride, love, fear, sadness. She absorbed as much as she could, knowing that the future holds no guarantees and that fate is cruel. Two five-year-old girls who the Schwers befriended while staying at the Ronald McDonald House during treatments have since died of the same type of tumor that is taxing Zara.
"I'm dried up because I cry so much I don't have anything left inside," Arpana said. "I feel like no one should have to go through this. No one — because I know what we've been through."
Zara, however, has been surpassing doctor's expectations since the beginning. The initial surgery, which extracted much of the 4-centimeter-long tumor, carried risks of total paralysis because of how interconnected it was with the area controlling Zara's motor function. But she raced through recovery — up and around in 12 hours instead of the 34 it takes most similar patients.
Biopsy of the tumor identified the malignancy as pleomorphic xantroastrocytoma, a high-grade, stage-four glioma brain tumor. It currently appears stable but still threatens to spread.
About 700 children are diagnosed with so-called astrocytomas each year — about 20 percent are high-grade, according to St. Jude's.
Zara began chemo and radiation last fall. Arpana, who worked helping refugees at Catholic Charities, took leave from her job to help Zara through treatments. The illness means Zara had to stop going to school. In addition, Arpana's parents (who do not drive) live with the family and she has another child — a toddler. Also, it's been a cold winter in an old house and promises of aid from a national home improvement chain have yet to materialize.
Zara's father, Jeremy, continues to work as a 3-D rendering artist for Ratio Architects. Their family budget made sense when both of them were working. His salary covered mortgage payments while hers was generally spent on food and other expenses. Her extended leave has left Arpana feeling helpless as a sea of medical bills — many now in collections — flood the mailbox.
The situation has led to the bitter irony that Arpana, who is used to helping people through Catholic Charities, is now the one seeking assistance for basic provisions such as diapers. Zara's aunt set up a website to collect donations.
Aside from spreading the word that her family really needs help, Arpana said: "We want to tell the community, 'You are lucky.' I feel they take for granted their kids, that they are healthy ... and they don't care. Now we are fighting for our baby's life. They should think how lucky they are. At least they don't have to go through what we are going through right now; this is the worst experience of life. ... Sometimes I just feel to see if she is breathing or not ... it is killing me."
More than $11,000 has come in to Zara's fund so far, but the unmet need cannot be overstated — daily expenses to maintain the family are ongoing and more than $70,000 in medical bills loom.
"Whatever Jeremy and I are making, it all goes to medical bills," Arpana said, noting that friends are shocked when they learn about the extent of their budgetary constraints. "Life is not easy for us. It's been really, really tough."
Zara, however, continues to shine, dreaming of a princess castle and drawing fairies with which she can decorate the walls. "Today my daddy is going to give me a lot of surprises," she told me when I came to visit. "Tomorrow is special."