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The day of Madelyn’s
6 week checkup, she woke up with a
swollen left eye. We talked to our
pediatrician about it and she claimed
that it might just be irritated from an
eyelash or something, so she cleaned it
w/sanitary water and prescribed an
antibiotic ointment. We used this over
a week along with warm compresses 3-4
times a day, but there weren’t any
changes. We asked the pediatrician to
see an ophthalmologist, which she then
referred us. After examining her, he
claimed she had a clogged duct in her
eyelid. He too prescribed an antibiotic
ointment and asked us to use it combined
w/warm compresses 3-4 times a day for 10
days. We used the ointment and applied
the warm compresses, but still no
changes. We then went back to the
ophthalmologist for a check up and he
said it looked better (not to my husband
and I) and that it would just clear up
on its own, to give it some time.
This just didn’t sit
right with us and our gut told us that
we should see someone else. After
talking to our pediatrician, we decided
to try to use antibiotic eyedrops
instead of the ointment, because maybe
the ointment wasn’t getting in the eye
enough. After 7 days, there were still
no changes in the eye. We then asked
our pediatrician to be referred to an
eye specialist. She then referred us to
the man who in my opinion saved our
daughters life with the correct
diagnosis.
Madelyn was 8 days
shy of turning 3 months old, when we
first saw the eye specialist. After 20
minutes of seeing
Madelyn, he diagnosed
her w/Horner’s Syndrome which he
described as a symptom of nerve damage
leading from the brain to that side of
her face. Typically, he explained, it
is caused by damage during birth, but to
rule out anything else, he scheduled us
for an MRI on Friday, December 15,
2006. This is the day that will be
engrained in our brains forever. This
is the day that changed our lives
forever. The eye specialist doctor who
we were referred to had the toughest job
I believe a doctor can possibly have.
He had to come into the room where my
husband and I were holding our sleeping
3 month old baby girl and tell us that
there was a primary tumor in her top
left chest and tumors in her liver. She
had cancer, Neuroblastoma to be exact.
We were given this devastating news at
about 5:30 on Friday. Let me tell you
when I say, it was the longest weekend
of my life. We could not meet with any
other doctors to answer our 5 million
questions until Monday morning. We met
with the Oncology team on Monday and
were scheduled for a liver biopsy on
Thursday. Once all of the diagnostics
were done, Madelyn was diagnosed with
Stage IV Neuroblastoma. The doctors
decided that because of her age, we
would wait and see if it would go away
on its own. The doctors stated that
because she was so young this was a
possibility. Average age that this
disease is diagnosed is between 18 and
24 months old.
On February 17, 2007,
we noticed that Madelyn’s right lymph
nodes were protruding from her neck, we
called the Oncologists and we
immediately went in for more scans.
Madelyn’s disease had progressed and had
spread from her primary tumor in her
chest, to her liver, right lymph nodes,
left lymph nodes and bone marrow.
Madelyn had surgery to have her port-a-cath
inserted in her chest and we started
chemotherapy. Madelyn received 4
different types of chemo drugs and
received 2 courses of 4 rounds of
chemotherapy for a total of 8 rounds.
We are happy to say that Madelyn was
declared NED (No Evidence of Disease) in
August 2007, weeks before her 1st
birthday. We had a huge birthday party
for her, celebrating her life and the
long life that she will have thanks to
the knowledge and abilities of all of
her wonderful doctors.
Ironically enough,
when my husband and I picked out
Madelyn’s name, we had no idea how
appropriate it would be. Madelyn is an
Irish name and means, strong woman and
of course Grace means to us, that she is
a Grace from God.
Having a child with
cancer is truly the hardest thing a
parent can face in my opinion. It is
thanks to wonderful organizations like
Children’s Chance that give us a place
to go for financial help, education and
direction on how to cope with this. We
have to be strong for our children, but
it organizations like this that can be
strong for us as parents. Although a
child is diagnosed, the entire family
must deal and cope with its effects.
Thank you so much
Children’s Chance for everything that
you do for our families!
Madelyn
has most likely been through more in her
life than most of us will ever
experience. And for that, Madelyn is truly a
Children’s Chance Champion!
- story submitted by
Sheila Bell, Madelyn's mother |
Madelyn
during round 8 of chemo
Madelyn
likes her cute hat!
Madelyn
with her Mommy during a round of chemo
Madelyn
Grace Bell
Madelyn
enjoys the slide!
M is for
Madelyn
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