Alic Shook is a Pediatric Oncology/Hematology Nurse at UCSF Benioff Children's Hospital, Oakland, California
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| Beads of Courage member Victor, age 5 |
Just a few days before Christmas, one of my favorite
patients, Victor, and his mother arrived from home. They were originally scheduled for admission
earlier in the afternoon, but didn't arrive to the unit until 11 pm. They’d spent the entire day in their car. The mountains near their home in Nevada were
covered with heavy snowfall and the usual four-hour drive turned into a nine-hour
trek.
While I was glad to hear I'd be his
nurse that night, I found myself wondering, "Really? We're admitting a kid for chemo the night
before Christmas Eve? Does the body – deep down on a cellular
level – does the body know the difference between December 23rd and December
26th? Probably. Could this have waited until after the
holiday? Probably not.” But I couldn’t think of anything more healing
for both him and his mother than to be at home on Christmas with the rest of
their family. I couldn’t think of
anything more disruptive than beeping pumps, blinking lights, and chemotherapy.
Despite nine hours in the car and being admitted just two
days before Christmas, he sat in his bed happily watching cartoons on an iPad
while his mother moved the car. When she
returned to the room I asked her how she was doing. We talked as she unpacked their things and
made a temporary home out of a lifeless hospital room. I remember she reached up to hang multiple
strands of beads on his IV pole, but I didn't think much about them then. She was always smiling, always calm, always
kind. In her eyes I could see she was
exhausted. I have been moved witnessing her
patience and tender love for her son.
A few weeks earlier I'd run into Victor’s mom, Amber, in one
of the hallways. I was at the hospital
working on a research project for our palliative care program. She looked struck by something and asked me, "Did
you hear about Abri?"
Abri was
another oncology patient on our unit, a 19-month-old girl. She was diagnosed with leukemia just after
her first birthday and spent the next eight months in the hospital with few
breaks at home. The leukemia hadn’t
responded to the final round of chemotherapy, so the medical team tried another
round of chemo. When that didn’t work,
they tried a “salvage” round of chemo. I’ve always thought that sounds so desperate – salvage. I suppose it is. Her course was complicated by typhlitis, an
inflammation of the bowel particularly associated with infection in neutropenic
patients. Now that was mostly under
control. But her white cell count was
climbing and the leukemic cells were crowding out healthy cells. Her organs were overwhelmed. She was dying.
I’d been her nurse often in the days leading up to this
moment and I sensed that she was not going to recover this time. It's as if there's a moment when you can no
longer push the possibility of death to the back of your mind because the
possibility of death has become the reality of life. There was an acknowledgement in the air
between Amber and I that this reality is something the children and families on
the pediatric oncology unit had been living with for a long time. Certainly Victor's mother was living with
it.
She leaned up against the wall in the hallway. "I can't
imagine," she said, talking about Abri's parents. "Their whole lives have been changed,
just like that." She looked off in the
distance at nothing tangible, nothing visible to the eyes. I had a feeling that perhaps she was
reflecting on how her life had been changed, how her life could still be
changed. "I keep thinking about
Journie. Victor was playing with her
right before it happened."
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| Beads of Courage member Journie, age 2 |
She was
talking about another little girl, Journie, 2 years old, who died less than two
weeks prior. Journie was originally
diagnosed with hepatoblastoma. A few
months after completing treatment, she was diagnosed with a secondary, aggressive
form of leukemia and after multiple rounds of chemotherapy was awaiting a bone
marrow transplant. As an African
American, she had a 76% likelihood of finding a matching donor.
Her mother worked tirelessly to find her a
match, holding donor drives all over the Bay Area and beyond. She found a donor and, in the process, raised
a great deal of awareness and created a community. Because of her – because of all the precious
hours she had to spend away from Journie, because of the months of sleep
deprivation she endured, because of an unrelenting determination to find a
match for her daughter – hundreds signed up to be bone marrow donors. Less than a week before Journie’s planned
transplant day, she died suddenly.
In his hospital room on Christmas Eve, Victor and his mother
had fallen quickly into a deep sleep, no doubt exhausted after their long
drive. At some point in the night, I
went to hang an IV medication on his pole and for the first time really noticed
the strands of beads hanging there. They
were "Beads of Courage." On
one of the long strands was spelled out J-O-U-R-N-I-E. Images of her came to my memory. It was as if she was there in the room. I reached up and touched them, thinking about
her. Thinking about him. And thinking about Abri. I thought to myself, "Abri's name should be up there too."
It was like coming into contact with something
mystical and spiritual, something that no diagnosis, no lab value, no
chemotherapy, and no medical jargon could define. This was the very stuff of life - stuff that, in moments such as this, transcends language. It's not just one bead that symbolizes what these children and families
go through: the seemingly endless nights away from home, the chemo, the
appointments, the hair loss, the diarrhea, the nausea, the vomiting, the fear,
the missed school days, the grief, the long hospitalizations, all the friends
made and all the friends lost. It's ALL
of the beads strung together. They
create something that, in the unendurable, endures.
Many years ago, just after the first child I cared for at
the end of his life died, I walked outside a hospital in rural Northern
Thailand and I remember being shocked that the cars were still moving, that the
world was still spinning, that nothing had changed. And yet something had changed. The Earth that we live on was without a
person. We were missing something. We were less than we had been just hours
before. I think that Beads of Courage
represent that change. They remind us of
the labor of healing these children and families undergo and the beads make it
tangible. They’re something you can look
at, something you can hold in your hands.
In that moment, staring up at the beads on an IV pole in the
dark of night with Journie's name on them – standing next to a sleeping mother
and child in the throes of cancer treatment – I felt the uniqueness of every
one of these lives and the uniqueness of my own life and I felt grateful –
humbled really – that our lives have been intertwined and that I have the honor
and privilege of being a witness to the magic, bravery, and the resilience that
these young people bring into the world.
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