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5035Re: [BrainSurgery@Yahoo] My son had brain surgery on March 23

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  • Aleksa
    Apr 21, 2011
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      Oh Nancy, this must be heartbreaking for you. As parents our hearts break at the thought that we might be the cause of pain for our children. But that's out of your hands as it is for every other parent in the world.
      I remember the sobs from my son when I told him about my partner's breast cancer diagnosis.  I remember the terror he experienced when he found out about my brain abscess.
      Despite an intellectual understanding of all this, I hate that I was the cause of that fear.
      I will pray for you and your family as you go through this. You will all be changed, and perhaps some years from now you will see there are gifts in this. But for now it's just hard.

      grace & peace

      --- On Thu, 4/21/11, Nancy Illing <mooky133@...> wrote:

      From: Nancy Illing <mooky133@...>
      Subject: Re: [BrainSurgery@Yahoo] My son had brain surgery on March 23
      To: BrainSurgery@yahoogroups.com
      Received: Thursday, April 21, 2011, 6:06 AM


      I don't have a brain tumor however I do have epilepsy and breast cancer. I had
      my first chemo treatment about 2 weeks ago. It was ok for the most part but I
      had a seizure in the car on the way home. I was supposed to have the treatment a
      week before but I had a seizure before I went and banged myself up pretty good.
      My oncologist made me see my neurologist and have a cat scan. Finally I started
      treatments. Since Ive gone back for my 2nd treatment and afterward I was waiting
      for my ride and I had another seizure on the front step of the hospital. It
      turned into a big deal. My husband and daughter had just pulled up and saw me
      slunched over. All of the sudden ambulance, cops, and people came running over.
      My husband said they wouldnt let him or my daughter near me. All I know is that
      I woke up in the emergency room with them suggesting I was pregnant right in
      front of my 8 yr old daughter. Now she has lived with my epilepsy her whole
      life, quite well I might add. I have hated everyday she has had to suffer but
      that day was one of the worst. She was scared to death. She won't leave my side
      for a second. It's her spring break and she has be subjected to this. I'm so
      upset. I hate my inadequacies. It's not her fault.

      From: Ronna Harlow <rharlow2@...>
      To: BrainSurgery@yahoogroups.com
      Sent: Wed, April 20, 2011 11:27:03 AM
      Subject: Re: [BrainSurgery@Yahoo] My son had brain surgery on March 23

      Yes, he seems to be at nearly 100% now, thankfully. He started chemo this
      week but so far seems to have minimal side effects from that - just some
      mild tiredness.

      You are so fortunate to have recovered so quickly! Johnny seems to be
      perfectly on track now with his speech although during the hospital and
      rehab stays he did come up with some off the wall answers, too. I'm glad he
      has his sense of humor because he was able to laugh through it all. When
      you reply "crabby patties" when the therapist points to a picture of a bed,
      there is not much else to do BUT laugh!

      On Mon, Apr 4, 2011 at 6:42 AM, Steffanie Flack <imliving4him@...>wrote:

      > Hi Ronna. I was in another group with a man who had a similar experience.
      > He struggled with speech, weakness and walking. He did go to a rehab
      > facility, and he's doing very well now. Of course every person is different,
      > but hopefully with the therapy, your son can recover. When I had surgery at
      > UCSF, it seemed that they expected you to go to a rehab facility afterwards.
      > By the grace of God, I had no deficits and was allowed to fly home--but I
      > think it's common to need rehabilitation afterwards. I would guess it's
      > pretty scary to be in that in between place, though. As a funny, just the
      > other day I wanted salt for my dinner, but I told my family I needed to get
      > the ketchup. I knew I wanted salt and not ketchup, but that's what came out.
      > My kids are young, and they think it's a hoot when I say weird things every
      > once in awhile. (It's not so much a hoot for me, though, but I'm glad they
      > can have a laugh at the situation.)
      > Steffanie
      > To: BrainSurgery@yahoogroups.com
      > From: rharlow2@...
      > Date: Sun, 3 Apr 2011 17:45:58 +0000
      > Subject: [BrainSurgery@Yahoo] My son had brain surgery on March 23
      > 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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