GBM left side paralysis (tumor recurrence)/ caregiver with children

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GBM left side paralysis (tumor recurrence)/ caregiver with children

by coxforever on Mon Jul 01, 2013 12:18 AM

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Hello, I am new to this site.  My Mom was diagnosed with glioblastoma multiforme on 10/31/11.  Temodar and Radiation helped to shrink her tumor on her right frontal lobe so she was able to enjoy a good quality of life until about March of 2013 when she started to really lose the use of her left arm and balance.  On May 17, 2013 she had what we beleive was a seizure, long story short, she is now paralyzed on her left side.  My sister and I have moved across the country to become her caregivers and spend precious time with her.  

I have 2 questions, first, does anyone have experience as a caregiver with young children at home?  My sister and I both have 3 small children so at times my Mom's house can be very full of life.  

Also, wondering if anyone has experience with paralysis and how long a GBM patient has to deal with this before it is the end?  Quality of life is not the best.  She began Avastin infusions on 5/24/13 for tumor recurrence and does them every 2 weekss.  

RE: GBM left side paralysis (tumor recurrence)/ caregiver with children

by dadGBM on Mon Jul 01, 2013 08:36 PM

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Hi, we lost my Dad to GBM in April very quickly (6 months).  I have two youg children, five and three. My Dad seemed to go from crying when he saw them, to getting confused if everybody spoke too much. I remember he didn't understand why we had the kids Dvds on, I don't think he could understand that the kids wanted to play and seemed quite irritable at times. He seemed to like order to things towards the end.  I put it down to the steroids as my Dad loved his grandkids and Mum more than anything, and was always happy go lucky . I never stopped seeing Dad with the kids. They at least had time to say goodbye. Having a left temporal lobe tumour, the hardest part for us was seeing my Dad's language disappear, though he was never in any pain.

RE: GBM left side paralysis (tumor recurrence)/ caregiver with children

by stbaz on Mon Jul 01, 2013 10:29 PM

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No experience with young kids, but in my sister's case, it was approximately 1 year from the time she starting having the symptoms you described, left side paralysis and seizures.  She got into a cyberknife trial and had that procedure on two occasions, which may have prolonged her life but it was essentially a lobotomy from my observations with all sorts of side effects from scar tissue in her brain and she always asked us if she was the same person or not.  We told her she was the same person not to upset her, but she clearly was not the same person and wished she hadn't done it.

RE: GBM left side paralysis (tumor recurrence)/ caregiver with children

by SarahGrey on Tue Jul 02, 2013 12:47 AM

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Hey there...

When my husband was initially diagnosed, he developed left side paralysis.  Treatments and physical therapy helped him get back use of his left side.

As things progressed...  from complete paralysis to him passing, it took maybe 3 months... 

Wishing you all the best through this,

Sarah

RE: GBM left side paralysis (tumor recurrence)/ caregiver with children

by loveiseternal on Tue Jul 02, 2013 04:56 PM

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Dear Cox,

My sons were 11 and 9 when my husband was diagnosed with GBM, so not super young, but young.

As much as my husband loved the boys, he could not tolerate any acting up from them whatsoever.  It's almost like they couldn't really be kids anymore.  They would start to bicker sometimes or even wrestle, as brothers who are close in age often do, and he would say to me "You HAVE to make them stop".

It was challenging.  As my boys were a little older, they adapted as best as they could.  Sometimes I would tell them, "if you are going to do this, you have to go where daddy can't hear you". 

Our whole household was held hostage to the GBM, but we got through.  And at times, the boys were a tremendous source of joy to my husband.

It's tough.  Hang in there!  Sally

Glitzy1294 Glitzy1294
(Inactive)

RE: GBM left side paralysis (tumor recurrence)/ caregiver with children

by Glitzy1294 on Tue Jul 02, 2013 06:56 PM

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I'm a caregiver with a 1 year old son at home.  My husband has GBM.  We just called in hospice and stopped treatment in the beginning of June.  His tumor is left frontal lobe.  His right side has quicky become paralyzed within about 2-3 weeks after stopping treatment.  I'm not sure how close we are to the end.  Someone else may have suggested checking out brainhospice.com i think it has symptoms to look for. We were doing Avastin, but it wasn't working. Feel free to PM me if you have any other questions!!

RE: GBM left side paralysis (tumor recurrence)/ caregiver with children

by SarahGrey on Wed Jul 03, 2013 01:12 AM

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PS - as loveiseternal got at, my husband (and I read others as well) became very sensitive to sounds.  Kids running around and making a lot of noises as well as, well, "being kids" is something that he couldn't be around - especially towards the end...  :(

RE: GBM left side paralysis (tumor recurrence)/ caregiver with children

by eternalife on Wed Jul 03, 2013 01:45 AM

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How are you doing, Sarah, you posted you were having some chest pains.. have you sought medical attention as so many have recommended.

this does sound like a possible MI.

Please let us know .

Thanks

RE: GBM left side paralysis (tumor recurrence)/ caregiver with children

by coxforever on Fri Jul 05, 2013 06:37 AM

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Wow, thank you so much for sharing your experiences with me and all of this helpful info. It is a relief to know that my mom's stress about the kids is normal, bless her heart. We met with the NO yesterday and he stated that the paralysis that she has on her left side is not due to the swelling and is more likely caused from brain damage from the tumor. We will continue with the avastin infusions for now. Thanks again for relating your experiences, in some strange way, I feel less alone as we find our way through this disease.

RE: GBM left side paralysis (tumor recurrence)/ caregiver with children

by Bulley1 on Sat Jul 06, 2013 04:32 PM

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How do you tell kids they can't be kids? My husband with left frontal lobe tumor adores our young grandkids but can only handle them in small doses..........I can't imagine how challenging it must be for you taking care of your mother with 3 small children in the house. So sorry you are going thru this and yet grateful for time with your mother in the same breath. Pam
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