19attacking his body as if it were a foreign
invader. The patient had a version of
this weeks after his stem-cell transplant,
when he developed a lumpy red rash:
G.V.H.D. of the skin. His doctors upped
the immune-suppressing medicines and
started something called photopheresis,
in which blood is routed out of the body,
through a type of light that kills off the
misdirected white cells, then back into
circulation. The rash slowly faded.
G.V.H.D. was common, he was told
back then. More than half of those who
have the kind of stem-cell transplant he
had will get it in some form. Once the
rash disappeared, his doctors stopped the
photopheresis and started lowering the
dose of his immune-suppressing medica-
tions. This had to be done slowly so that
the new cells and the old body had more
time to get used to each other. And he’d
done well, until that Christmas Day.
↓
Losing Weight
The form of G.V.H.D. he now had, locat-
ed in his lower gastrointestinal tract,
was far more serious than the type he
had before, the oncologist told him.
The doctor immediately increased the
immune-suppressing medications.
Usually that step provides relief within
days. When it didn’t, additional medi-
cations were added. When that didn’t
help, another medicine was added and
titrated up.
Are you sure I have G.V.H.D.? he asked
the oncologist. Over the fi rst couple of
weeks, he lost more than 10 pounds. The
doctor ordered a biopsy of the lower
GI tract, which was suggestive of mild
G.V.H.D. but not defi nitive. That wasn’t
uncommon with this disease. G.V.H.D.
can elude testing; a diagnosis is usually
made based on the patient’s story. He
already had G.V.H.D. once, and the diar-
rhea started as he was being weaned from
the immune-suppressing drugs. That clin-
ical picture, even without the biopsy con-
fi rmation, made the G.V.H.D. diagnosis
overwhelmingly likely.
↓
The Right Treatment?
And yet, why wasn’t the treatment work-
ing? The oncologist had no answer. After
a few more weeks, the patient despaired.
Am I dying? he asked the doctor, hoping
to be reassured. But the doctor hesitantly
acknowledged that he might be. The
patient lost all confi dence in him and told
him so. Jagasia, the head of the cancer cen-
ter, stepped in to oversee his care.
Jagasia was concerned that although
G.V.H.D. was the most likely diagnosis, it
might not be the right one. The patient
had already been tested for the usual
infections seen in immune-suppressed
patients. So he looked for other possi-
ble causes of the patient’s diarrhea. He
didn’t fi nd any. The patient lost another
15 pounds. When he looked in the mir-
ror, he hardly recognized himself. Jagasia
arranged for the patient to start getting
intravenous nutrition and began tapering
one immune-suppressing medication in
order to start another.↓
His Son Weighs In
The patient’s son was in medical school
in another part of the state and called
home frequently. When his father fi nal-
ly told him how sick he was, his son got
scared. His father was a minimizer. If he
was saying this, things must be bad.
When he got off the phone, the young
man immediately turned to the internet.
He typed in ‘‘gastroenteritis after... stem-
cell transplant.’’ The fi rst results that came
up referred to a paper in a medical jour-
nal, Clinical Infectious Diseases, published
nearly a decade earlier that identifi ed an
unexpected culprit: norovirus.Norovirus is one of the most common
causes of gastroenteritis in the world. In
the United States, it’s linked to an estimat-
ed 21 million cases of nausea and vomiting
every year. Diarrhea can be present but is
not typically as severe as other symptoms.
In a normal host, the infection resolves on
its own after 48 to 72 hours, thanks to the
hard work of the immune system. Even
so, norovirus was not a common cause
of diarrhea in those who are immunosup-
pressed. But in the medical-journal paper,
the fi rst of its kind, 12 patients who had
a stem-cell transplant and developed a
persistent diarrheal illness were found
to have norovirus. And of those 12, 11
were initially thought to have G.V.H.D. In
most of those cases, it was only after the
immune-suppressing medications were
reduced that the patient’s own defenses
could come to the rescue and vanquish
the virus.
The son immediately sent the paper to
his father. Had he been tested for noro-
virus? he asked. The patient wasn’t sure.
He forwarded the journal article to Jagasia
and asked if he’d had this test. He hadn’t.
Jagasia was 99 percent certain that this
was a wild-goose chase. He’d never seen
norovirus in patients with compromised
immune systems. Still, testing was easy.↓
Surprise Results
When the test came back positive, Jagasia
was stunned. He repeated the test. Pos-
itive again. He immediately started to
taper the immune-suppressing medi-
cations. As the doses came down, the
diarrhea slowed, and after a few weeks,
it stopped completely. With the help of
the IV nutrition, and a slowly improving
appetite, the patient began to gain back
the weight he lost. From the patient’s
point of view, his son saved his life.
The patient had a good spring and sum-
mer. But in the fall of 2018, tests showed
that his leukemia had returned. Despite
aggressive treatment and intermittent
improvement, the disease progressed.
When I spoke with him in late February,
he was in hospice. He had two goals. He
wanted to make it to his daughter’s wed-
ding in late March, and he wanted me to
tell the story of how his son saved his life
and gave him almost two more years with
his family. He was so proud of his children.
Sadly, he didn’t make it to either goal.
The patient died earlier this month.Lisa Sanders, M.D.,
is a contributing writer
for the magazine. Her
latest book is ‘‘Diagnosis:
Solving the Most Baffl ing
Medical Mysteries.’’ If
you have a solved case to
share with Dr. Sanders,
write her at Lisa
[email protected].The New York Times Magazine