Andrew’s cancer, however, a subtype of acute
megakaryoblastic leukemia (AMKL), affects only about 45 children a year
nationwide and is much more difficult to treat. The odds of surviving this type
of AMKL are roughly even — unless the child is one of a handful who happen to
have a particular genotype, in which case these odds plummet to a mere one in
10. Genetic analysis revealed that Andrew was in this tiny group.
There was more bad news. Two weeks after the diagnosis,
Andrew’s doctor, Norman Lacayo, an oncologist at Lucile Packard Children’s
Hospital at Stanford University, received an urgent call from Michael Loken,
the president of Hematologics Inc., a Seattle lab that was analyzing Andrew’s
cells. Loken had recently discovered that a small percentage of children with
AMKL had a specific phenotype — a pattern of proteins on the surface of the
leukemia cell he called R.A.M. (a former patient’s initials) — that
independently predicted a terrible outcome, with a survival rate of about one
in six. Andrew had this phenotype too.
“Has anyone ever survived this kind of cancer?” Dan asked
Lacayo. “All I wanted to know is that it was not impossible,” Dan recalls.
Lacayo said yes, but Dan felt his answer was “foggy.” The truth was that the
team couldn’t find a single equivalent case in the literature…
Once Andrew’s illness was diagnosed, he needed a bone-marrow
transplant as swiftly as possible…
Andrew underwent two rounds of chemotherapy, but there were
still traces of cancer when the transplant was performed in February 2015,
putting the outcome at high risk of failure…
A bone-marrow test that April showed no traces of cancer,
and Andrew was considered to be in remission…
But on June 19, the medical team told Esther and Dan that
there was bad news again: Andrew’s cancer had returned. The number of cells was
small but would inevitably grow, the doctors explained. The team presented a
new plan: They would begin chemotherapy again in preparation for a second
bone-marrow transplant, perhaps using cord blood this time…
“The emotional scars of the experience,” he said, “would be
irreparable if we ripped them open and split our family apart again.” They [the
parents]decided to stop treatment. They would move to their new house, where
Andrew would spend whatever time he had splashing in their swimming pool and
playing in the grass with Wills and Lea.
The doctors were stunned. “We love you, and we love Andrew
and we’re not ready to give up,” Jennifer Willert, the pediatric oncologist in
charge of the transplant, blurted out. Lacayo and Willert argued for at least
trying some palliative chemotherapy to prolong Andrew’s life. Esther and Dan
hesitated but ultimately declined…
“I truly believe that I have a new way of looking at
parenting — it is not about the length of life that matters, but the quality of
life,” Esther wrote. “We are going to focus on quality.”…
On July 1, they moved into their new house, and Andrew
became sick. By the holiday weekend, he was moaning or screaming in pain
whenever he was awake. Dan took a leave of absence from work. Esther held
Andrew at all times, his body draped over hers on the couch or the bed. Dan
took food to her because she couldn’t hold him and sit up at the dinner table.
Her hair began to fall out because of the stress. “It was unbearable for him
and for us,” she says…
During the second week of July, the hospice team told them
to prepare for Andrew’s imminent death. They called a rabbi, and thinking about
how Andrew loved airplanes, they picked a Jewish cemetery near the airport. Not
wanting him to be buried alone, they purchased grave sites for themselves as
well…
Sometimes he stopped breathing momentarily, and his body
would become rigid, and his face turn blue. “It’s O.K. for you to go,” Esther
told him. All she wanted now was for this to end quickly…
The vigil stretched on through the summer, and what they
called “mirages” began to appear. In late July, Esther was sitting outside with
Barbara Sourkes, holding Andrew and watching Wills shoot baskets. Suddenly
Andrew sat up and reached for a ball and managed to throw it through his own
little basketball hoop. Esther and Barbara were speechless…
But soon these episodes began to lengthen. For Esther, the
mirages did not feel like miracles but “evil tricks.” She went through intense
surges of anger. “I felt like, How many trials are we going to have to endure?”
she says. “Are we being spared nothing?”…
Esther started sending the medical team videos. “Andrew is
eating pizza, Andrew is sitting up, Andrew is laughing,” Lacayo, their
oncologist, recounts. “And we are like, What?”...
Esther recalls how friends urged them to enjoy every moment,
and how she would tell them: “No, this is hell, and it sucks. He is still going
to die, so there is nothing joyous about this time.”…
Michael Loken, who had analyzed Andrew’s blood work, had not
been surprised that Andrew’s cancer returned. He had been working on a paper
about R.A.M., the genetic marker that Andrew had. He had tracked 19 other cases
of children with the phenotype; three years after the diagnosis, only two were
still alive and healthy. When he examined Andrew’s marrow this time, using a
sample of 200,000 cells, he got goose bumps. He repeated the test with 500,000
cells. Then he called Lacayo with the news. The cancer had disappeared.
How could cancer spontaneously disappear? “It does feel a
bit like a miracle,” says Jennifer Willert, the transplant doctor, echoing the
sentiments of others. Noting the rare evocation of a concept that stands
outside science, Loken says: “It certainly defied our expectations with no
discernible basis of happening. I guess this may be the definition of a
miracle.”
The doctors theorized that the response was partly a product
of timing: The cancer had returned just as Andrew’s new immune system grew
strong enough to destroy the cancer cells. A critical part of why transplants
work is that some of the white blood cells, the T cells, that grow from the
transplanted bone marrow will attack any lingering cancer cells, an effect
known as graft versus leukemia…
Willert had made a key decision to depart from Stanford’s
protocol to increase Andrew’s chances of getting a robust graft versus leukemia
effect…
Willert, who is now at the University of California, San
Francisco, Benioff Children’s Hospital, had advocated a rapid early taper of
Andrew’s immune-suppressing drugs on Day 60, as is the practice at U.C.S.F. and
other places, because she felt that the benefits outweighed the risk of graft
versus host…
The final, critical decision was made against medical
advice: Esther and Dan’s resolution to stop treatment and let Andrew die. Had
they permitted more chemotherapy, the treatment would have killed Wills’s
cells, which were what ultimately enabled Andrew to live…
But it is hard for her to feel safe. The two years after a
transplant are the riskiest time for a relapse; after two years that likelihood
plummets, and after five years, a patient is considered cured. The two-year
mark is still nine months away…
Only in the past few weeks, Esther says, has she been able
to feel that she isn’t testing fate by scheduling a dentist appointment for
Andrew six months out or by feeling moments of joy watching him without being
shadowed by fear of the future. “Day by day,” she says, “we are allowing
ourselves to celebrate a little more.”
Courtesy of my daughter.
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