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5028Re: [BrainSurgery@Yahoo] Re: My son had brain surgery on March 23

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  • Ronna Harlow
    Apr 19, 2011
      Well, I've had practice for nearly 3 years of being a long-distance mom. So
      long as I know he is pretty much back to normal, I don't think it will be
      too hard. He and I are simply not used to being together and I know he is
      ready to send me home! He did quite well yesterday with his first dose of
      chemo. He's a very independent young man and he knows he can contact me at
      anytime for anything.

      Thank you!

      On Tue, Apr 19, 2011 at 9:00 AM, Aleksa <hattie886@...> wrote:

      > Will it be hard for you to be a long-distance mom again after being so
      > involved in your son's day-to-day life, and especially after the hard news
      > you've received.
      > Blessings to you and your family.
      > grace & peace
      > Aleksa
      > --- On Mon, 4/18/11, sally.1234sally <rharlow2@...> wrote:
      > From: sally.1234sally <rharlow2@...>
      > Subject: [BrainSurgery@Yahoo] Re: My son had brain surgery on March 23
      > To: BrainSurgery@yahoogroups.com
      > Received: Monday, April 18, 2011, 4:05 PM
      > My son was discharged home from the rehab facility on April 8. Since then
      > he has made an awesome recovery and is fully functional and quite
      > independent now! He no longer has the expressive aphasia and his right-sided
      > weakness is nearly gone. However, on April 13, 3 weeks following surgery, at
      > a followup with his neurosurgeon, we were told it was a grade 3 oligo, a
      > malignant neoplasm. That was the first time we heard the actual diagnosis. A
      > nurse at the rehab place told us the diagnosis was "benign neoplasm" so this
      > bit of news hit us rather hard! Well, he started Temodar today, along with
      > Bactrim and Zofran. He will be on this for twelve months. Today is Monday,
      > April 18 and he told me yesterday I should go home this weekend. I am
      > waiting to hear from his insurance regarding the coverage for Temodar. He
      > may qualify for some assistance as he is only a student with no income but
      > we are waiting to hear back on that.
      > He choose to take his Temodar in the morning with his other meds rather
      > than at bedtime, as bedtime for a college student is kind of up in the air
      > and he always gets up at 8:30 to take his other meds anyway.
      > Anyway, his progress since being home has just been amazing, he is ready to
      > fly on his own now and I'll get to go back to being a long-distance mom once
      > again.
      > --- In BrainSurgery@yahoogroups.com, "sally.1234sally" <rharlow2@...>
      > wrote:
      > >
      > > The surgery went great. The doc says he got most of my son's
      > oligodendroglioma out and I am so thankful for that. What we were NEVER
      > alerted to were some of the side effects of a left frontal craniotomy,
      > namely expressive aphasia and right-sided weakness, so when these symptoms
      > didn't get better in the few days after surgery, that hit us like a ton of
      > bricks. My parents and I drove 1800 miles to CA to be with my 20-year-old
      > son (a junior studying electrical engineering). The day after surgery, even
      > though I had never been told of the side effects, I accepted them as
      > "temporary" but as the days went by and he was not getting much better, it
      > was decided by the doc to admit him to an acute rehab facility and then it
      > was a waiting game in the hospital - waiting for a bed in the rehab facility
      > to become available. He could have been discharged home Saturday following
      > surgery but insurance would not cover rehab if he went home. A bed did not
      > become available
      > until Wednesday March 30. In the meantime, I started working with my son
      > with numbers, letters, spelling, colors, shapes, etc. I know this is a
      > horribly frustrating experience for him because he KNOWS the answers but the
      > wrong words come out of his mouth. My hair is brown but he replied "yellow"
      > then "red" when asked, then laughed because he heard himself give the
      > "wrong" answer. But he can spit out the numbers for pi to like 10 digits!
      > lol. funny thing, the brain. Thank God my son has a sense of humor. I just
      > told him that this situation absolutely SUCKS but here we are and we need to
      > move forward and work hard together. He gets it. On Tuesday March 29 he
      > could not open his hand, extend his fingers or make a fist. He was up and
      > walking, though, and his balance seems to be just fine - just a small
      > deficit on the right side and awareness of it. But the next day, Wednesday,
      > March 30, he could open and shut his hand and just yesterday he is now able
      > to
      > pinch weakly - I bought him a white board and have him practicing his
      > writing. I had only planned to stay in CA for 2 weeks and flew home
      > yesterday - but I have to go back to be his caregiver until he is able to
      > function independently. My job, thankfully, is portable, and his apartment
      > manager is graciously allowing me to move into his place and even providing
      > me some furniture - the only thing I lacked was transportation - so I bought
      > a car back home - I will pick it up tomorrow and drive 1800 miles back to
      > take care of my son.
      > >
      > > Has anyone in this group this experience? How long did it take you (or
      > your loved one) to "recover" from these side effects? Any words of wisdom?
      > >
      > > Thanks so much for this group to allow me to 'vent' ..
      > >
      > > Ronna :o)
      > >
      > [Non-text portions of this message have been removed]

      [Non-text portions of this message have been removed]
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