By Mary HK Choi
Leni Hsiao has just turned 6 months old. I know this because she’s on my Instagram feed wearing a pink sash that proudly states her age. Her parents, Jerry and Amanda, do this every month. They post tons of pictures of their kids. In one, Leni’s photoshopped upright on a skateboard and in another, Mae, Leni’s 2-year-old sister, is crying her indignant little face off as enormous Chanel quilted handbag — a hilarious Halloween costume her mom made by hand.
It’s all freakin’ adorable but then again I’m pro-babies when it comes to social networks. Babies and bulldogs are my jam.
Though I’ve been friends with Jerry and Amanda for damn near a decade, it was only through Instagram that I discovered that their newborn was sick. Just after Leni was photographed at 3 months — sash and all — she was diagnosed with acute myeloblastic leukemia, a rare blood cancer that’s caused by translocated chromosomes. It’s completely random, not hereditary and is sometimes found in kids with Down syndrome, but Leni doesn’t have it.
“Something hadn’t been sitting right with me,” says Amanda when I visited her home last week. “After her second month, Leni would look green or yellow. On the 12th of August, Leni had a fever,” says Amanda. “For weeks her pediatrician said it was gas, but she was projectile vomiting. Like, straight-up ‘Exorcist.’ It was weird.” By the time her doctor agreed that something was up, Leni and her family were advised to go straight to the emergency room.
“They took her temperature rectally and she pooped and there was blood in it. I was like, ‘This is bad.’ Then they put us in an isolation room and again, I was like, ‘This is bad.’ I knew it was really bad when every time I looked up, there were teams of doctors coming in. Teams. GI doctors, oncologists, more pediatricians, another 15 intensive care people. We were there for four hours when they admitted us. It took them nine days to diagnose her.”
The hashtag #loveforleni started populating my Instagram and Twitter feeds, and Leni’s 4th and 5th month photos were taken in pediatric intensive care units. In them, she has a tube in her nose and other tubes for food and medication. After her first round of chemo, Leni’s hair fell out, so Amanda and Jerry put a paper crown on her head. She looks teeny-tiny, green and awesome.
In order to get better, Leni needs chemo, possibly a liver transplant and a bone marrow transplant. “Bone marrow transplant is icing on the cake,” explains Amanda. “If chemo is dinner, then bone marrow therapy is dessert.” While not considered crucial, it helps odds in ensuring that your child remains cancer free, despite the risks. It’s why it’s sometimes not covered by insurance. The odds in finding a match are also invariably tricky.
“I remember when the doctor was telling me about bone marrow treatment,” says Amanda. “It’s crazy to be reliant on someone else — a stranger — for your daughter’s life. You pray to God whether you're religious or not, in that moment, that this thing that you want even exists.” This was before they discovered that big sis Mae was a match. If there wasn't an in-family match, Leni’s odds were not good. Only 4% of the millions of donors on the national registry are mixed-race, thus making it challenging for biracial babies like Leni to find a suitable donor.
With so few minority donors and fewer donors who remotely mirrored Leni’s heritage, they began researching and hearing more stories about how challenging it was to find a match as a person of color. In order to raise awareness and debunk myths, Jerry and Amanda organize #LoveForLeni swab events so that people can step up and become registered in the bone marrow database to become future donors. Especially their super-awesome, crazy-attractive, multi-racial friends in New York and California.
Amanda also wants to spread the word that bone marrow donation isn't as petrifying as most people think. “There’s two ways you can donate. You go to the hospital and they put a syringe in the back of your hip. But you’re not going through any nerve endings so there’s no danger of paralysis.”
If the idea of a hip injection makes you want to barf and pass out, there’s another option. “The non-invasive way goes on for five days. You take this medicine and it makes your bones let go of stem cells and they hook you up to a machine that pulls the stem cells out of the blood and puts the blood back in.”
Look, neither is a picnic. Doing either of these things ranks less pleasurable than, say, eating an ice cream sandwich or making out with someone you love. But it can help save lives. It’s a generous, awesome thing you can do for another human that yields incredible benefits. It’s also a drop in the bucket if you want to compare it to the suck of having cancer.
Leni’s still very sick. She went into septic shock during her first course of chemo and almost died. She had to wait until she was strong enough to undergo another course. “You should see the special gloves, suit and masks that people administering the chemo put on,” says Amanda. “They have these specially-marked bags of medicine that just looks toxic. And they’re putting it in my 10-pound baby. I used to worry so bad about hormone-free milk and formula so that the girls wouldn't get their period when they turned 8. Everything’s so different now.”
Another terrifying aspect to all of this is that both Amanda and Jerry are out of work. Jerry, a graphic and toy designer, was let go, and Amanda, who designs clothing for Baby Gap, is on an unpaid leave of absence. There hasn't been an income since the spring. While Amanda’s job is still maintaining her health insurance, the unforeseen medical expenses are intense, as are the out-of-pocket expenses. Leni needs chemo, possibly a liver transplant and a bone marrow transplant. “We get $30 a month for disability, though,” Amanda says brightly. “The paperwork took a month to wade through.”
While Leni’s liver was stabilized, she was allowed to go home for a week before she started her second round of chemo. It was the first time since August that Amanda and Jerry got to be at the same place at the same time with both girls. The plastic tubs of medication on the kitchen counter and the fridge are unbelievable. There’s a sheaf of paper that describes what they all do, and Jerry’s tasked with administering each. “I’m getting really good at this stuff,” he says. Despite all the meds and Leni’s feeding bags and tubes, the family’s in good spirits. “Look at her, she looks like a little retiree,” remarks Jerry, wheeling her portable IV pole into the kitchen.
The reality is still pretty insane. Vitamin E pills that were on Leni’s list of “stuff she needs” cost $180 because health care in this country is deeply weird (they inquired about liquid vitamin E, which only costs $30, then figured out that it’s basically the same stuff Amanda’s been rubbing on her cuticles that costs $8 from the health food store). Friends have rallied, cookies have been baked, their neighborhood pizza parlor Speedy Romeo’s made donations from every sale for the month of September, and there was a well-attended art auction held at downtown impresario Jeff Staple’s Reed Space that featured work from artists from Faile to Haze, but they are also taking donations from their site loveforleni.com. They need help.
“I’m so tired of asking people for money,” says Amanda. “But it’s been amazing. We’re getting donations from strangers, and I’ll Google them just to see. They’ll send five bucks and I love them for it. Think about it: If a homeless person asked you for money, you’d give them a quarter or maybe a buck. Five dollars is a lot of money.”
For more information on Leni and swabbing events happening in the U.S., take action below.