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Not Lyme Disease, Brain Tumor - Page 2

post #31 of 40
Oh, Hannah, I am just reading this thread for the first time. That is terrible that they didn't do things right the first time. Hopefully, recovery will proceed better now after the second emergency surgery. You and your sister will be in my thoughts and prayers.
post #32 of 40
Wishing your sister well and lots of get better vibes. Praying she gets better.. We are all here for you
post #33 of 40
I'm so sorry hannah, but at the very least you know that you are smack between 2 of our nations best hospitals. I know it's not much comfort, but they'll take care of her best they can. remember though a large part of the success rate with cancer and with any serious surgery is the state of mind the patient and family have. keep a bright face on for your sister and help her keep one on too, her chances of success are greater that way. I'm in your area hon, if you need anything yahoo PM is gibbey_wibbits. fingers crossed.
post #34 of 40
Keeping you and your sister in my thoughts and prayers.
post #35 of 40
Thread Starter 
Hi, I thought I would update the thread, since I havent been around a computer in a while. Sarah is recovering well from the second surgery, but she is having some problems. It looks like her brain stem got squeezed down into her spinal column twice--before both surgeries, when she was experiencing massive swelling in the brain. When it got squeezed, it damaged her visual cortex and even though nothing is wrong with her eyes or optic nerve, there is brain damage on the cortex, and she has (probably) permanently lost her vision.

Now that she is starting to be conscious and lucid for larger amounts of time, she is realizing that something is horribly wrong. She keeps feeling her surgical scar (which now goes from ear to ear over her head) and is starting to feel scared and alone by her vision loss. The Neurosurgeon came in and talked to us, but in front of her, so she got some massive bombs dropped on her: that she had 2 brain surgeries, that her tumor is a glioblastoma, which is extremely malignant and aggressive, that she will undergo chemo and radiation, that she will not regain her sight. She did, as anyone would, and started bawling. Poor poor baby!

Oh, it just breaks my heart to see her so scared and alone in the hospital. Even though we are all there I can tell she feels really alone.
Does anyone have experience getting through something like this?
post #36 of 40
OH, Hannah, I have been thinking about you and your sister a lot. I am so sorry it is so painful to watch her go thru this. It all must have come as a tremendous shock all at once like that. Remember she is experiencing a loss right now, the loss of her vision, and in her mind the loss of her independence. Treat her as you would if she had lost a loved one: Be with her and let her grieve, cry and talk about it as she is able. If she's already feeling isolated, she will need a lot of support and company.

Has she spoken with social work yet about rehabilitation? I imagine that will be the first step toward her regaining a measure of independence. Keep praying for that miracle, and understand that the doctor is not trying to discourage you, just giving you the facts. Were I in her situation, I would want to know EVERYTHING, no matter how difficult it was to hear. Knowledge truly is power.

Keeping you and your family in my thoughts and prayers!
post #37 of 40
Thread Starter 
There is some good news --Sarah has moved down into a regular hospital room. She is sitting up now, and disconnected from her leads for heartbeat, oxygen etc. She just has one IV left. She sat the whole day today because she's been in bed for over a week now. She's talking, making jokes and laughing now. Hooray! Her voice is really raspy because she was also on a ventilator for a week, but she can at least talk now.

I think they will keep her at UNC and do some in-patient rehab before
they send her home. We feel pretty good that Dr Ewend, the Chief of Neurosurgery is the leader for her team. On the other hand, she is coming to and realizing something is really wrong. She thinks the tumor was removed and the major issue is her blindness--she doesnt realize she has a glioblastoma--a very nasty, angry and aggressive maglignant tumor. Her blindness is apparently permanent. Ewend said it was the first time he has ever seen someone loose vision because of a tumor causing massive internal pressure. Ah Sarah, she has always been an overachiever. Too bad her tumor is, too.

So, we are taking the good with the bad and giving thanks for what we
have today. Ewend says we will know more about her prognosis when she starts chemo and radiation and can tell if the tumor is resistant or
receptive to treatment.

Thanks and keep those good wishes coming,

ps: Billy and Blossom have been amazing! They follow me around when I get home--not necessarily chirpy or meowy, but they just sit near me. They play with each other a whole lot more. Kind of like they are saying "meowmy and paw are so sad. Lets play together now and cuddle with them later. We can cheer them up!" And they do--they play together so cute and funny it always does bring a smile to our faces. Cats are so dang smart--they know what's going on.
post #38 of 40
Your sister will continue to be in my thoughts. Thanks for the update.
post #39 of 40
Hannah, I am praying for you and your sister! You can never prepare for things like this as MA said. I know it's hard but take it a day at a time.

Sending good vibes

post #40 of 40
I'll be praying for your sister, you and the rest of the family.
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