Allison's Story

Allison Dale Griggs was born on August 8, 1999. She was a
healthy, full-term baby and a joy to her parents, Dave and
Jennifer, and her 5-year-old big brother, Matthew Clark.
Aftera medically unremarkable first year, the family was
optimistic about their future. At her 15-month check-up,
her pediatrician, Dr. Maria Collado, noted as manyas 8 light
brown spots, known as cafe-au-lait spots, on her body and
legs. Also, there was significant freckling in her groin and
armpit regions. Concerned, but not wanting to alarm,
Dr. Collado referredAllison to a local neurologist.
Upon, his initial examination, he gave Allison a preliminary
diagnosis of Neurofibromatosis Type 1, or NF1.

How It All Started

Our neurologist scheduled Allison for her first MRI scan to check for
any hidden fibrous tumors in her body or brain. This scan in February
2001 showed a small tumor on her left optic nerve, called an optic
glioma. Gilomas occur in less than 20% of all NF1 cases. Since, at the
time, her vision did not seem to be affected, a follow-up exam was
not scheduled until July. Life continued on as normally as possible
for the Griggs family through the spring and into the summer, all the
while watching Allison for any and all changes. The MRI date
approached in late July and all seemed to go well. The very next
day the family received the devastating news from the neurologist.
In the relatively short four-month period, the glioma on her left optic
nerve had doubled in size and there was now a new glioma
growing on the right optic nerve. The doctor had never dealt with
a case where gliomas had grown so much so rapidly. Due to
the seriousness of her condition, the doctor had made the
necessary arrangement for Allison to be evaluated and begin
treatment at Children's Hospital of Philadelphia. by the middle of
August, Allison began a regimen of outpatient chemotherapy
treatments once a week that would be administered over the
course of 4 to 5 hours with follow-up MRI's scheduled every three
months. In addition, an Iv port about the size of a watch battery
was surgically implanted into her chest to allow for the numerous
injections of medications and sedatives she would receive. Allison
had just turned two years old.

The Bad With The Good

Over the course of chemotherapy, there were several difficulties
that came as a result of her treatments, including hair thinning,
nausea, loss of appetite, weakness, fatigue and suppressed
immunity to communicable diseases. In addition, because of
the risk of bacterial infections in the IV port, any fever above 101.0 F
had to be evaluated at CHOP for a period of 24 hours. At one
point her chemotherapy was stopped due to an acquired
intolerance to the medicine, carboplatin, one of her main
chemotherapy medications. Allison had an acute bronchial
reaction and severe facial swelling. Later, the treatments would
continue with the addition of a 90-minute pre-treatment
plan to desensitize her to the carboplatin to prevent further
reactions. For all the heartache and difficulties allison and
her family endured, it can not be ignored that the phenomenal
staff of doctors, nurses, medical assistants and non-medical
personnel at the Children's Hospital of Philadelphia became like
a second family to them. Their dedication to Allison's well-being
was paralleled only by their kindness and compassion to the
family's situation. This was true not only for them but for all
the other oncology families that visit CHOP on a regular basis.
For this, the staff at Children's Hospital should be admired and
respected. After nearly three long years, Allison was released
from treatment. The medications she received never decreased
the size of the tumors, only stopped them from growing, a chance
they were advised of at the onset treatment. The Griggs family
continues to have Allison evaluated at CHOP for MRI scans
and vision screenings by pediatric ophthalmologist, Dr. Grant Liu.
Recently, her neurooncologist, Dr. Jean Belasco, has reported
small changes in her optic gliomas but has not yet suggested
a new course of treatment.

Rays of Sunshine

During her treatment, a social worker with Children's Hospital, Brett
Kramer, asked if Allison would be interested in receiving a "wish" from
Make-A-Wish Foundation. This foundation is responsible for
granting "wishes" like gifts, trips and special guest visitors
(sometimes celebrities) for seriously- and terminally-ill children.
Everyone agreed that she definitely deserved a wish! Her wish was
to visit the Princesses in Disney World in Orlando, Florida. When she
finished her treatments, the trip was scheduled for November 2004.
Allison and her family were blessed with round-trip transportation
courtesy of Amtrak (Mom won't fly) and a 7-day 6-night stay
in the Wilderness Lodge, complete with park hopper passes for
all the Disney theme parks as well as paid admission to Universal
Studios and Sea World. It was truly a wonderful gift. During and
following her chemotherapy treatment, Allison had developed
peripheral neuropathy, a temporary condition where the outer
extremities (arms/hands, legs/feet) grow weaker and can
lose their reflexes. This was brought on by another medicine in her
regimen, vincristine. To aid in her recovery, she was scheduled for
weekly outpatient physical and occupational therapy at
Children's Specialized Hospital in Toms River, New Jersey. Here she
grew and flourished and was ultimately released from all therapies
there by January 2006, thanks to all their wonderful and
talented therapists.

Allison Today

Today, Allison is an active and happy girl who enjoys school, dance
classes, coloring and playing with her friends. Although neither her
parents nor her doctors can predict what direction her condition will
take her, the Griggs family are determined to do everything in their
power to show their gratitude and, if possible, give back more so
that others may benefit.