|
It’s hard to accept that your
three-and-a-half-year-old daughter may never get married, let alone
graduate from high school, or even start kindergarten. We wallowed
in our sorrow for a few days until we realized that we had to do
something. We had to continue on, as we had her entire life, making
sure she had the most love and best environment possible. We were
committed to doing everything possible to prove the medical experts
wrong. We explored every possible standard and alternative treatment
option, and most importantly, we prayed and placed our faith in God.
Sophie began her treatments at St. Jude
Children’s Research Hospital. Although we weren’t 100% convinced we
wanted to put Sophie through radiation and chemotherapy, we heard
such great things about St. Jude that we decided to begin the 6-week
journey as soon as possible. We packed up our things and left for
Memphis five days after Sophie was diagnosed. While at St. Jude,
Sophie had many appointments, from routine check-ups and blood
draws, to physical therapy and occupational therapy, and of course
six weeks of radiation. During this time she was also taking the
chemotherapy drug, Zarnestra, as part of one of St. Jude’s clinical
trials. For 31 days of radiation, Sophie was sedated and strapped to
a table with a mask placed over her face. Throughout her time at St.
Jude and after, she continued to remain on steroids, in an attempt
to control swelling which would hopefully minimize her symptoms. She
gained about 15 pounds from the steroids, which was just over 1/3 of
the weight she was before diagnosis.
We were told that upon completing radiation we would probably have
“up to six good months” with Sophie before the tumor progressed, and
that during this “good time” she might “be back to the normal,
pre-diagnosis Sophie.” Unfortunately at the end of the six weeks at
St. Jude, we really never made it to that point. Although some
symptoms had improved, it was really not the dramatic improvement
for which we had hoped. Sophie never regained the use of her right
side, never got her smile back, and never walked without a limp. At
that time, there was really nothing else St. Jude had to offer, so
we returned home to Avon Lake, hoping to make the best of the summer
and have as much fun and create as many memories with Sophie as we
could.
After Sophie’s first follow-up MRI (2 weeks after completing
radiation), we discontinued the clinical trial upon returning home
because we did not see any benefit from it. Knowing that
conventional medicine could not provide us with any options for a
cure or any other treatments that might help Sophie, we spent
endless hours reading books and scouring the internet for anything
we could try. Anything that sounded reasonable and had any anecdotal
evidence of success, we tried. We tried herbal supplements and
tinctures, from Probiotics, iodine drops, wheat grass, oxygen drops,
alkaline drops, krill oil to paw paw. We also contacted a doctor
from India who had seen some success using Ruta-6 for brain tumors.
We completed a phone consultation with one of the doctor’s
colleagues in the US, and ordered the recommended remedies. We gave
this a shot; again, seeing no improvement. We met with a naturopath
and used lasers and went through various phases of limiting certain
foods in Sophie’s diet. We cannot be certain of their effects, as
some we continued until the end.
Sophie did have a couple of good months in May
and June. She was able to get around by crawling. We continued her
OT and PT here at our house, and although she didn’t love it, she
cooperated as best she could. We tried many times to reduce her
steroid in an effort to get her off it completely. We longed to
“see” the Sophie that we knew, as well as spend time with the Sophie
we knew who wasn’t as angry and irritable as the Sophie we knew on
steroids. Throughout the course of Sophie’s treatment and the use of
steroids, she was always hungry and had a terrible time sleeping
soundly. We tried to choose foods for Sophie that fit into the
“cancer diet,” but when your child is “starving” all the time, the
guilt of not being able to feed her what she wants is excruciating.
<< Previous Page 1 |
Page 2 | Page 3 |
Page 4 |
Page 5
Next >>
|
