Three months since her 18-month-old daughter, Luna, was diagnosed with a brain tumor, Maria Bueno is sorting through her old thoughts, still working toward forgiving herself for having them.
“Maybe people thought, ‘Why do you want another baby so bad?’ We already had four,” she says, three boys and a 21-year-old daughter. “But I really wanted another girl. I asked God, ‘Please send me a little girl. Let me have a little girl.’ Then he gives it to me, and then he put me on this … I don’t know. Maybe I was thinking just what I wanted. There were so many things going on in my head. Maybe I did something wrong in life to deserve this. I got mad. Why God? Do I really have to have faith?”
In July, Luna had surgery to remove the tumor, an aggressive, uncommon cancer called atypical teratoid rhabdoid tumor, or ATRT, which had spread throughout her brain and into her spine. After receiving two cycles of chemotherapy at her local hospital, Luna was referred to CHLA for three rounds of higher-strength myeloablative chemotherapy and autologous stem cell rescue, wherein the patient’s stem cells are collected ahead of the chemo to spare them from damage, and afterward are infused back into the bloodstream to rebuild bone marrow. It’s a treatment that few pediatric hospitals have the expertise to administer. Luna had her second round in early November. By Christmas, she’ll be done with the third one.
“Then you watch her,” says her oncologist, CHLA’s Ashley Margol, MD.
An MRI taken after Luna’s second treatment of standard chemo was encouraging. The tumors in her spine and nearly all those in her brain were gone; the last bit of tumor remaining is in her internal auditory canal. The hope is that the final series of high-dose chemo will extinguish it.
“We’ll scan her with an MRI every three months and keep our fingers crossed,” says Margol, who continues to research ATRT, which strikes fewer than 200 U.S. kids a year, with the intent of finding new ways to defeat it.
“There are kids we’ve cured of this,” she says, acknowledging that Luna’s local hospital offered Maria and her husband the option of not treating Luna and simply managing her pain. “So I would never have told them not to treat her. There are physicians who do. Sometimes it’s because they haven’t seen as many good outcomes as we have.”
Fortunately, Luna has been free of the worst side effects of chemotherapy. Around the hospital, she surges with life. “She walks around and gives everyone high fives,” Margol says. “That’s her thing.”
“I want to keep thinking that everything is going to be fine,” Maria says. “I asked God for forgiveness that I lost my faith. Maybe the way I reacted was normal, but I should’ve stayed strong and said, ‘No, God is going to be there for me and her.’ But it’s hard to not think, to not be mad or sad. It’s your daughter.”
After Maria returned home with Luna following the first round of chemo, her family, populated with several musicians, threw a big party for them. “My uncle said, ‘We’re going to play for you guys.’ So they started playing. Luna was dancing the whole time. I started crying. My heart was beating so hard. It made me happy to see how strong she was.”
She only wishes she had thought to videotape it, “to show people how strong they can be.”
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