Maddie was diagnosed with a brain tumor
in December of 2011. Initially it was thought to just be a benign mass,
but the mass hemorrhaged and it was obvious she needed surgery to have
it removed. No one ever expected what was to come, it was a grade 4
malignant monster called Glioblastoma multiforme or GBM, one of the most
aggressive forms of brain cancer. Maddie underwent 33 radiation
treatments, where she was put under anesthesia every morning, and she
started an oral chemo routine. Our oncologist warned us at the beginning
of this journey that there where NO successful therapies or treatments
in pediatrics for this type of cancer. The one approved chemo that we
were desperately counting on showed no effect in children, but it was
all we had so we fed out daughter poison every day hoping praying that
she would be the exception.
Every day after radiation Maddie would
head off to school....seemingly a normal child. We have been SO SO
blessed that through this 19 month journey she has been able to enjoy
life outside of a hospital and enjoy being a kid....however I would
trade that in a blink of an eye to spend 5 years in the hospital if that
meant that I would see her loose a tooth or kiss a boy, or drive a car.
We carried on waiting every 3 months for a MRI to tell us if we would
be able to plan ahead to see if I had 3 more months with my baby. The
nightmare we have lived is beyond what a human should have to go
through.
Then on her MRI in November of 2012, a year to the day we
found the first tumor, we found a new one. Rinse and repeat....surgery,
33 more radiation treatments.
This time no chemo because well it
didn't work, no point giving something to make a child sick if its not
doing its job. And again every day she would go to school after her
treatments, my strong brave princess warrior. We carried on like before
but knew that our time to enjoy was very limited. Her radiation
completed in February, and then in June of this year a third tumor was
found.
We were given a few choices, another surgery, more radiation,
a trial. Every time we made a decision a door would close. We opted
for a trial, then the trial would close. We decided to go with the
surgery but the day before the surgery another mass was found....meaning
surgery was no longer an option. No point removing one tumor if
another was growing. We searched high and low for a trial, but
unfortunately not many if any are open to pediatrics. GBM is one of the
most common types or brain tumors is adults, so all treatments are
directed to adult patients and the FDA doesn't allow pediatric patients
to participate in adult trials. After exhausting all options we where
left with the choice of a chemo that has shown NO effect on GBM, would
make her very sick, her hair to fall out, and be in and out if the
hospital sick and in pain, or take her home and enjoy our time with her.
We chose what we thought was best for her and took her home. We started
hospice care on Monday, and she has declined rapidly. Friday she was at
school running and playing....Sunday we were at a water park with her cousin....Monday we were in bed and having psychotic episodes. Today we
will be adding a 5th medication to her regimen to control her pain. All
in all though we are just so lucky to have the days and time we do. We
have cherished every minute we have had with our baby since the moment I
knew she was growing in my belly. There has never been a more precious
special child. She has been the center of our world, my best friend and
our true angel and she is only going to be here for a short time more.
*update* Maddie passed away on September 22nd after a 22 month battle with cancer.
Maddie's Support Page - Fight for Maddie
Hope Session by https://www.facebook.com/
