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"A new normal."
 Early
on, Dr. Puccetti, Mo's oncologist, told us our lives would take
on a "new normal".
We
are about 3 weeks into our 7 week break, and new normal is a good
description of the shape our lives have taken. Mo continues
to improve each day, and he is busy working at it! He has
much more to do than we can fit into a day, so we try to balance
his activities to cover the progress he needs to make in various
areas. His new normal until Spring break goes something like
this:
 1-2
hrs of school in the morning.
A quick
lunch followed by 1.5 - 2 hrs. of individual instruction by a tutor
A snack
followed by a couple of hours of physical acitivity which includes
dog walking, drumming, PT, OT,
speech exercises, and karate
practice (though not all of them everyday!).
A bit more
homework and a short TV break before dinner.
A bit more
homework and a short TV break after dinner. Cartoon network
and CNN are his favorites.
There
are also rehab and medical appointments on some days, and once a
week we try to attend a meeting with other kids who are being treated
for cancer which is held at the University Hospital.
Now that the dust from radiation and chemo has
settled a bit, we are able to observe and assess the significant
challenges which have been left by the removal of the tumor. In
particular, Mo's right arm and leg need strengthening and retraining,
as do his vocal chords (he speaks quite softly). Drumming
and karate continue to play an important role in the rehab process.
This evening Mo restarted his karate class, which is fantastic.
He had graduated to purple belt just before the tumor was
removed, so this was the first class he attended as a purple belt
- and he did a great job! His daily practice of many rehab
activities and his return to karate just 3 months after surgery
and 3 weeks after chemo/radiation are a real testament to his strong
determination and spirit. Drumming provides a unique challenge as
it requires the use of both hands and both feet. Mo has great
rhythm, so his brain knows what his hands and feet should be doing,
but his right arm is not always cooperative. This is a source
of some frustration, but also a motivation and a measure of progress.
Rehab is a slow process, something we're not accustomed to
in our culture of instant everything...
As one might imagine, we are really looking forward
to a vacation on Tybee Island (near Savannah, Georgia) with Grandma
Shari and Grandpa Sy during Spring Break.
We are also preparing for next course of chemotherapy
(which begins 4/21). It will consist of 8 six-week courses
which I have outlined on the calendar in the treatment section of
this website. I am planning to add a bit more detail on that
page, but I would point out that the first treatment of each of
those courses occurs in the hospital and we are expecting some discomfort. Those
treatments consist of 3 medicines as opposed to the single medicine
which Mo received during his previous chemotherapy (he will also
recieve that single medicine on the 2nd and 3rd treatments of each
of the upcoming courses). These medicines are very powerful
and can produce a wide variety of side-effects, which vary greatly
from one patient to another. We are planning to implement
more complimentary (alternative) therapy, which we will write about.
As you all know, this illness has altered the course of our lives.
As a part of navigating and adjusting, we (especially Anne)
have read a lot of literature. For anyone who might want more
insight than is being provided on our website, there is a lot of
info on the web. As a recommendation, you might look at Understanding
and Coping with Your Child's Brain Tumor, which is published
by the National Brain Tumor Foundation. It requires the Acrobat
Reader, which probably already on your computer (it should open
automatically if you click the link). It is well written and
not-too-technical. In particular, there are sections on chemo
and radiation.
To end on a positive note, I'd like to share these pictures from
the last few weeks.
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