Jennifer's
Story
Jennifer
exhibited signs of Hemihypertrophy on her right side not long after birth.
Both her right leg and arm appeared larger in size then her left. At the
time we were told that it was nothing to worry about as it would likely
balance out as she grew older. We were never told what it was at the time
and to this day we are not sure if her pediatrician or family doctor actually
knew what she has.
During
1998 & 1999, Jennifer began to experience a chronic bloated stomach.
Her stomach would stay bloated for whole day and then would recede. The
cycle would repeat every couple of days. Again we were told it was nothing
to worry about. An ultrasound was performed for an unrelated condition
that showed her kidneys to be fine.
In
the Summer of 1999 ,Jennifer began to associate some pain on her left
side when she was bloated. We took her to see her family doctor who thought
it was nothing but ordered an ultrasound to be sure (thank God). The next
day she had an ultrasound that appeared to go fine. At the time I thought
it was unusual that the ultrasound technician focused on the right side
of her stomach when the pain was on the left. The day after we heard what
most parents would never expect to hear, Jennifer had an abdominal mass
located around her right kidney.
At
this point we were more in shock than scared. Arrangements were made to
go to a urologist early the following week for more tests. That very night
however, Jennifer began to have terrible pains on her left side. We rushed
Jennifer to the local hospital where a stomach x ray confirmed the existence
of a tumor.
We
immediately took Jennifer down to Toronto Sick Kids hospital. The first
doctor to see her identified Hemihypertrophy almost immediately. The association
between hemihypertrophy and a kidney tumor made the diagnosis of Wilms
seem likely. The doctor also identified a slight heart murmur but
felt that this was not a serious issue.
Within
a 7 day period since the first visit to the family doctor, Jennifer was
operated on and had what was left of her right kidney removed along with
a tumor the size of her head! The tumor was pushing her internal organs
to the left side and that was causing her pain on the left side in the
first place.
The
tumor turned out to have favorable histology, which was our first concern.
Initially she was classified as stage 2 but further tests showed that
the tumor had spread to the lymph nodes. This discovery changed the treatment
to include radiation and 27-week cycle of chemotherapy. She was
reclassified as stage 3.
During
an Echocardiogram to test her heart due to one of the chemotherapy drugs
she was diagnosed with Patent Ductus Arteriosis (PDA). A duct that
normally closes at birth is allowing reverse blood flow into the lungs.
We are not sure if this is related to Hemihypertrophy but it seems suspicious
since we know another child with Wilm's that also has PDA but no symptoms
of Hemi. We now we have cardiology involved.
We
are about to meet with the genetics department at Sick Kids to try and
get more answers. She is also involved in a study were a sample
of skin was removed during her initial kidney surgery. We are awaiting
results from this test.
Jennifer
has done remarkably well during the whole ordeal. Someone said the treatment
is worse than the disease as it relates to chemotherapy. When you
are talking about your five year old daughter getting so sick that she
has to be admitted back to hospital, loosing her signature long red hair
and the endless trips to hospital, I would definitely agree. Jennifer
has been amazing through this whole ordeal.
Having
the knowledge that less than six percent of Hemihypertrophy patients result
in Wilms is likely little comfort because even if it were 0.1 % you are
probably still very nervous during your quarterly ultrasounds. Catching
Wilms early makes all the difference in treatment of this condition. We
had only wished that Jennifer were properly diagnosed earlier so that
she would have been screened and the tumor found before it got as large
as it did.
Rick
& Ann Godin
Oshawa
Ontario
Canada
