Updated 6/3/2001
Jennifer at age 9
This is about my daughter Jennifer who is 14..
We found Jennifer 's brain tumor when she was 10 months old. They told me it
was in the brain stem and cerebellum. Her first surgery they said they got
60% of the tumor but 40% remain. Then at 18 months she had her first shunt
surgery. Then at age 2 she has a double hernia operation. Then at 3 she had
another brain surgery due to tumor regrowth. Again they had to leave 40% and
she started radiation right after that. Every day for 6 weeks.
Then at 4 she
had another regrowth and the doctors here (PA) felt it was inoperable so we
went to see Dr. Fred Epstein in NY and she had her 3rd brain surgery. She has
many shunt problems while there and had to have 4 shunt surgeries. After she
came home she went on to have 2 more shunt surgeries. Finally got one to
work.
Then about a year later she starts to have problems with her hands and
needs to have a shunt placed in her spinal cord due to a Syrinx. Then at 8
she had tumor regrowth again and she had to go into chemo. She was IV chemo
for 16 months. She ended having 2 brovacts and finally ended getting a port
placed.
Then after her chemo (the tumor did not shrink it was maintained) she
had the port removed. Shortly after that she started having syrinx problems
again and ends going to Pittsburgh to have her spinal cord shunted again and
the doctor ended leaving the top of her spine open with about 4 stitches.
Jennifer at age 11
Then at age 10 she shows has growth hormone deficiency and is placed on
growth hormone. She get a needle every day. Then at about age 11 her shunt
started to malfunction and she ended having 14 shunt surgeries with the last
one being at the age of 12 and the shunt is a Coleman Programmable Shunt.
Then after being on growth hormone about 9 months they stop due to tumor
regrowth. We take her to Dr Albright and she has the "Gamma Knife" procedure
done. She does well. They at 11 months after the procedure there is tumor
regrowth and the doctors at Children's Hospital in Phila place her on
Temodar. She is currently still on there and is tolerating it well! She
started it July, 2000 and in Sept 2000 they felt she had some tumor
shrinkage. Jennifer surgeries are up to 29 !
Jennifer is otherwise a very healthy active child. She is in 7th grade and is
in special classes for reading and math. She is your typical teenager. She is
frustrated that she is short (She is 4'7") She just started to feel
frustrated with having the tumor and just wants it to go away !!
Jennifer at age 14
