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On November 4, 2003
we found out that our three year old daughter, Sarah, who had recently relapsed
with ALL, a form of leukemia, had a fungal infection. She had just finished a
hard round of chemo and she had absolutely no immune system. The next twenty-two
days were spent in Primary Children’s medical center hoping with each passing
day that our daughter would live through the night. The black mold growing
rampantly through her body was in her tissues, but the place that worried
doctors the most was the growth in the nasal cavity. The fungal infection was
rapidly eating away the flesh in her nose and with each day it was getting
closer to the barrier that separates the nasal cavity and the brain. Surgery
after surgery was performed to scrape away the decay in the nasal cavity to
keep it from crossing the brain barrier. Each day the news grew grimmer and my
heart sunk further into despair.
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| Sarah's birthday party Nov. 2003 |
Day after tedious
day I watched my daughter slowly dying. If her immune system did not kick in
soon there would be no hope. One day I picked up an old Ensign and read an
article that gave me hope. It was A
Christmas with No Presents, by Pres. James E. Faust (https://www.lds.org/ensign/2001/12/a-christmas-with-no-presents?lang=eng ) He shares about
the happiest Christmas from his childhood. They were very poor, his father was
in law school and his grandparents knew that if the little family did not come
home for Christmas they would not have a Christmas. He shares about the
memories of a happy Christmas filled with family and love.
He says, “As
I look back on that special Christmas over a lifetime, the most memorable part
was that we did not think about presents. There may have been some handmade
mittens or a scarf given, but I do not recall any presents. Presents are
wonderful, but I found that they are not essential to our happiness. I could
not have been happier. There were no presents that could be held and fondled
and played with, but there were many wonderful gifts that could not be seen but
could be felt.
There was the gift of boundless love. We knew God
loved us. We all loved each other. We did not miss the presents because we had
all these glorious gifts. It made me feel so wonderful and secure to belong and
to be part of all that went on. We wanted nothing else. We did not miss the
presents at all. I never remember a happier Christmas in my childhood.”
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| Sarah wanted ponytails like her sisters. This was the best we could come up with, fuzzy ponytail covers |
I knew this was
what I wanted to create for my family. I began focusing my energy on making a
memorable Christmas. Working with my hands day in and day out kept my mind
occupied, and kept me from going absolutely crazy in that little four-walled hospital
room. I began
pleading with all my heart for a miracle for just one more Christmas with our
family together. I knew all I wanted was one more memory filled with love. I
prayed and pleaded, I studied and prayed some more. After many close calls
Sarah was released to come home! It was two days before Thanksgiving and our
miracle began.
Thanksgiving
was wonderfully pleasant. It was just the five of us, a chicken, boxed stuffing
and mashed potatoes. Yet, the memories of the warmth and comfort of the day are
vividly imprinted on my heart.
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| Favorite outfit, pink cowboy boots and her cowboy hat |
The glorious month
of December was a gift sent straight from heaven. The twinkle in Sarah’s eyes
had returned and her sweet disposition was back. Her strength was increasing
and soon she was dancing with Alan, Emily and Ruth again. She and I still went
to scores of clinic visits. But magically we came home each night to play and
dance as a family.
We dared not pull
out the dusty box of ornaments or the stored artificial tree, for fear that the
dust may cause harm to Sarah. Instead, I let the girls choose a table top tree
and one new ornament for it. Emily and Ruth were mesmerized by the
grandma-looking fiber-optic tree in the store and its brightly changing colors.
They knew that was the one Sarah would love the most! Home we went to put it up
with its three silver ornaments hanging from the branches: a heart, an angel
and a beautiful ball. It was a magnificent sight. Three happy faces glimmered
as the tree changed from a dazzling red to a twinkling yellow.
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| Santa Baby |
One Sunday
afternoon Emily and Ruth busily made a paper chain to drape on our large
picture window in the living room. All the colors of the rainbow, with no
apparent pattern, were glued together; it was beautiful! The handmade stockings
I had tediously worked on in the hospital now hung from the fireplace. Emily’s
was decorated with snowmen, Ruth’s a candy cane and Sarah’s very appropriately
shined with an angel. It was a sight only a mother could call beautiful.
Nonetheless, it brought a wonderful spirit into our home.
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One family home
evening, Emily wrote each person’s name on a slip of paper and put it into one
of Sarah’s many stocking hats. One by one we drew a name from the hat to give
someone a present. We began making our homemade gifts, somewhat out of
necessity since I could not leave Sarah to go shopping and Alan was working
many hours.
Again, the clinic
had become our second home. Sarah and I spent more daytime hours there than at
home. December was no different; clinic visits rolled by three to five times a
week. But clinic visits, as long as they were, were still better than hospital
stays.
I had learned to be
assertive with the doctors and medical staff over the course of Sarah’s
illness. I became my child’s only advocate. No one knew Sarah better than me
and I understood the cancer course we were on.
It had been too
long since her last chemo treatment because of the fungal infection. The
doctors were getting antsy about her relapsing. She was scheduled for a week of
Cytoxan, a powerful chemo that is usually administered only while staying in
the hospital. We had been home for one week and she and I could not bear to
face another inpatient hospital stay. I spoke with our doctor at our clinic
visit and voiced my concerns. He kindly consented to administering the Cytoxan
in the clinic for five days straight instead of a hospital stay. It meant we
spent 8-9 hours a day in the clinic, but at least we returned home each night. He
seemed to understand that Sarah was fighting a useless battle, and he knew how
important it was for her to be home as often as possible.
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| Sarah and her Bitty Baby she loved |
Immunosuppression
comes with many limitations, often restricting not only the patient but the
entire family. If any member of the family contracted an illness they were put
in isolation and far away from Sarah. We tried our best to keep the entire
family well. For this reason our Christmas activities were limited mostly to
car rides. We loved driving through new neighborhoods, spotting all the lights
and nativity scenes set out in celebration of the Christmas season. Sarah’s
favorite car ride, however, was through the Layton City Christmas lights. All
of us peered through the car windows into the dark of night where the lights of
whales, penguins, dinosaurs and Santa and his reindeer lit up the black sky.
Each time we finished Sarah cheered, “Again Daddy, again!” Over and over again,
we drove through the twinkling lights.
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| "lights" at temple square from Alan's office |
Saturdays became
the traditional visit to Vosen’s German bakery. The yummy pastries, pretzels
and bread melted in our mouths as we savored each and every morsel. Sarah loved
the salty pretzel for its bold taste. Chemo had changed her taste buds
significantly, and if it wasn’t bold she didn’t want it.
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| Sarah at Alan's office desk |
Often our trip to
Vosen’s would be followed by a quick stop at Dad’s office. Saturdays at
Deloitte were pretty baron in December. Therefore, it became an actual
destination where Sarah could get out of the car and come into the building.
She loved setting her pretzel down on the large dark wood desk and picking up
the telephone with its scores of buttons. Emily and Ruth were always close by,
with the phone headset in place and the sticky notepads in hand. Dad’s big
comfy office chair was better entertainment than any amusement park. The girls
took turns whirling and twirling each other around and around in the big black
chair. By the time we left, Alan had so many sticky notes to remind him to come
home on time, that there was no way he would be coming home late any time soon.
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| Sarah as Mary holding baby Jesus |
Christmas morning
arrived. The girls giggled with excitement as they anticipated the hallway door
being opened into the enchanting world of Santa Clause. They stood, lined up,
youngest to oldest with their teeth brushed and hair combed in their new
Christmas pajamas. One by one they walked into the living room where the small
fiber optic tree glistened against the dark of the early morning and the
Christmas carols softly chimed in the background. Each quickly spotted their
stocking filled with gifts and goodies and began opening their new treasures.
It was a meager
Christmas by choice, but one that was filled with everything for which I had
wished, desired and prayed. The air was filled with a magical feeling of peace
and love. I have learned over the years that it isn’t the gifts or things that
are remembered, but the feelings of joy and love. Our last Christmas with Sarah
was a miracle for our family and a special gift from our Father in Heaven.
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| Emily in Perú |
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| Bott Selfie |
