Mothers' heartache spills onto
the Web
10:15 AM CDT on
Saturday, August 7, 2004
By
JACQUIELYNN FLOYD / The Dallas Morning News
Late in the evening, after the hospital quiets down and her
baby is asleep, Jenny Scott sits down to a laptop computer and
spills out her heart to thousands of strangers.
She writes after good days and bad ones and even after the
worst, when hope seems to be slipping away like a vapor.
I've been crying for the last three hours. The thought of
losing my baby is killing me. How do I live my life without her?
Down the hall, Dana Eisenberg is writing, too, about her family
and her feelings and her sick son, about her strange, intense,
camping-out existence on the 12th floor of the North Texas
Hospital for Children at Medical City Dallas.
Last night was terrible. I was up almost the entire night
giving Sam extra pain medicine from his pump ... my baby is in
bad shape.
Both mothers are enduring the worst pain a parent can face.
Jenny's 7-month-old daughter, Allie, and Dana's 3-year-old Sam
have leukemia. Both moms started Web pages to keep family and
friends updated – sites that have unexpectedly become real-life
compulsory reading for strangers around the world.
"People are religious about our Web site," Jenny said. "They
stay up late and wait for us to post."
She doesn't let them down. Jenny, 26, and her husband,
Andrew, estimate they have sometimes logged as many as 15,000
"hits" in a single day from readers eager for an update on their
daughter. Allie's acute myeloid leukemia was diagnosed when she
was 3 months old.
It was a devastating diagnosis for an infant. Babies rarely
have the strength and stamina to combat the deadly blood cancer,
and treatment options are grueling: radiation, chemotherapy and
as a final hope, a transplant of stem cells from the umbilical
cord of a healthy newborn.
It turned life upside down for Andrew and Jenny, high school
sweethearts who married six years ago, acquired a golden
retriever named Brandy, bought a house in Allen and anticipated
with joy the birth of their first child.
Allie, a plump, pink, laughing baby, started running a
stubborn fever in March. When doctors diagnosed leukemia, the
news could not have been much worse.
Dana's son Sam enjoys better odds: He recently underwent a
bone-marrow transplant supplied by his twin brother, Ethan.
Dana, 41, a doctor's wife, didn't know Jenny, a middle school
French teacher, before they met at the hospital. Now they are
inseparable, as much by choice as by circumstance.
They comfort one another after setbacks, and celebrate
victories. They're at the heart of a little band of 12th-floor
parents who are trying to help each other endure the unbearable.
We have added a new family to our circle, Dana writes
after hearing about a woman named Lisa whose son's leukemia was
recently diagnosed. I wrote Lisa a note and told her about
what we've been through, as I heard she was really having a hard
time with it.
"We take care of each other," Jenny told me one day last
week, when I went to visit at the hospital. But they also ask
candidly for the prayers and support of all the anonymous
viewers in cyberspace who might run across their story.
And they're astonished by the sheer volume of well-wishers.
The interwoven journals of the two mothers have spread like a
word-of-mouth wildfire.
Allie has fans who send baby clothes and toys. Some readers
arrange for meals to be delivered to the hospital for Jenny,
Andrew and the other families on their unit; others post their
wishes and prayers.
I asked Jenny whether she isn't unnerved by the loss of
privacy, but she said no, that she's strengthened by the love
and support.
"I made a conscious decision to do this," Jenny said. "It
might not be for everybody, but it gives me an outlet."
We laugh that surely with all those prayers, God is up
there saying, 'Enough, already, I heard you!' Keep 'em coming,
though. We need every thought and prayer possible.
She doesn't hold back. Even this week, after receiving the
devastating news that Allie is not responding to her stem-cell
transplant and has dwindling odds of survival, she wrote with a
fierce honesty that is wrenching to read:
The thought of going back to being just the two of us
scares me. I'm scared to live my life without her. I'm scared to
think of having any other children ... I remember someone
telling me when I was pregnant that you love your child so badly
that it hurts. Yes, it hurts. It hurts so damn bad that I can't
even breathe.
Jenny writes about Sam, too, and the other kids on the unit, and
Dana writes about Allie. Sometimes they baby-sit for each
another to provide a desperately needed dinner-out-with-husband;
sometimes they throw little "happy hours" in an adjoining
conference room.
It's as if their shared experience has blurred the
nuclear-family barricades that usually separate suburban
American households and brought them into a little commune of
necessity.
And they entirely understand each other's need for the
occasional meltdown:
I hate being in the hospital, Dana wrote shortly
before Sam started his radiation treatments. I hate what
we're about to put our kid through. My baby, my first-born by
one minute, is about to have his brain radiated. Can you think
of anything more grueling than this?
OK, that's enough of this pity party.
Reading back through their online journals, through the joy and
sorrow and fear, you're awed by these two women, by their
selflessness and their tensile strength.
Dana said she is buoyed by the messages from strangers who
have been moved by her story to recognize the best in their own
lives.
"They'll write, 'I don't know you, but because of you, I hug
my child more; I love my family more.' "
Maybe that's because Dana and Jenny are a living, daily
illustration that when you strip away everything else, the
little twin pilot lights of love and hope keep burning.
Jenny knows the news is not good. But late one evening this
week, she sat down at the computer and wrote to all the
invisible friends she has come to count on:
Please keep your prayers going for our baby. Allie is not
gone yet.
E-mail
jfloyd@dallasnews.com
