“The Life-saving Treatment That’s Being Thrown in the Trash”

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The Story

“The Life-saving Treatment That’s Being Thrown in the Trash”
by Bryn Nelson
Mosaic, March 28, 2017

The Pitch

[Nelson notes: I already had a relationship with Mosaic at this point so I didn’t really include the grafs on why I should be the one to write it, etc.]

Life with Amelia (Life after Leukemia)

On December 31, 2015, Chris Lihosit celebrated his “zero birthday,” the day when his own immune system, obliterated by sky-high radiation and chemotherapy, was replaced by roughly four tablespoons of a life-granting elixir from two baby girls. “I use more vanilla flavoring creamer in my coffee than the volume of cells that are rebuilding my entire blood and immune system,” he later wrote to friends.

Lihosit, a Seattle-based telecommunications expert who had been diagnosed with acute myeloid leukemia earlier that year, had just received a double umbilical cord blood stem cell transplant, an experimental variation of a transplant first performed in children in 1988. The blood from a baby’s umbilical cord, once considered medical waste, garnered even more attention when doctors began transplanting its immune system-building cells into adults a decade ago as a last-ditch option for leukemia patients who couldn’t find a suitable bone marrow donor.

A mismatched but immature immune system fashioned with cord blood cells, doctors hypothesized, would be less likely to attack its new host. That strategy proved critical for Lihosit, who had an immune-specific genetic marker so rare that only one other person in the world matched him – and unfortunately, that person couldn’t donate his bone marrow. The cord blood alternative could also prove invaluable for minorities, who are seven-fold less likely than their white counterparts to find a bone marrow match in public registries.

Cord blood transplant therapy is now reaching maturity: heralded for its ability to treat or cure 75 diseases and conditions, it is benefitting from a raft of new techniques aimed at boosting its potency and studies pointing to its long-term benefits.

Life for an adult leukemia survivor with a cord blood transplant, however, is like hitting the reset button and waking up with the immune system of a baby. That means extreme dietary restrictions (no honey, mushrooms or soft cheeses) and no dogs, zoos, farms, gardening, or fishing until the new cells mature. A complete round of childhood vaccinations is required. All old allergies may be wiped out – only to be replaced with an entirely new slate.

Although Lihosit received blood from two babies born in 2015 (“I’m as nervous as an expectant father,” he wrote shortly before the cells arrived), only one would make it to maturity and become his “internal lifesaver-on-loan.” In April, after his new immune system took hold in his body, doctors declared him cancer-free. His partial rebirth is now tracking the same immune system maturation taking place in a young girl living somewhere in the United States; Lihosit will share her allergies and her gradually strengthening defenses. In July, he and his family celebrated the birthday of the baby responsible for his rebirth – a girl they’ve named Amelia.

So what does life after leukemia look like? And what are the implications of carrying around a bit of someone else – a savior, yes, but also an unpredictable passenger – in your body? Lihosit has been remarkably open and detailed about his experience. For this story, I’d like to chronicle some of the changes and perceptions at play in him and other cancer survivors, and document some of the new science that could bring similar experiences to more patients. With a finite supply of cord blood, what are the tensions between public and private banks? Could doctors hit the reset button in other ways? And what else might survivors encounter while living life anew with a baby like Amelia?

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