Father has GBM

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Father has GBM

by Fightingson on Tue Feb 19, 2013 08:33 PM

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This is my 1st time posting here as we just recently found out my father has GBM. I am 29 and have a 5 yr old daughter and a 9 month old son. My father is 59. So on to my fathers situation. My father had a seizure and wound up in the hospital. After MRI found a brain tumor. 5 days later he had a full resection and came out pretty good. Having some difficulties now but he's on the mend. Hopefully out of hospital soon. My mother is a few weeks removed from a major surgery herself and is trying to heal up and also be there for my father. I am 1 of 3 children but the only 1 within reasonable time to help my parents. I have to drive 45mins/ 1hr to get to their house/the hospital. Doctor told us 12 to 18 months even with treatment, which was very depressing. Just looking for some advice for a few different things. I am self employed and was wondering if there are any grants or anything out there to help me finically if I take time off to take care of my father. My mother has used all her PTO cause of her surgery and has to be back to work in a week and my father isn't even home yet. And also any info on helpful things to do to make things better for my dad.

RE: Father has GBM

by NatmomwithGBM on Wed Feb 20, 2013 12:45 AM

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Hi;

My mom was diagnosed at 58 with GBM 4 Nov. 2011. I live in Canada. Not sure where you live but the grants/programs we have are likely different. I'm really sorry your father and family have been affected by this disease. It's an emotional roller coaster ride. It sounds like your dad is actually in the best position in terms of longevity and functionality. Total resection is good. What are the next steps? If he can be treated at a facility with an actual brain tumour program or at brain tumour center that would be best. Where was his tumour?

RE: Father has GBM

by Randy1958 on Wed Feb 20, 2013 12:52 AM

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On Feb 19, 2013 8:33 PM Fightingson wrote:

This is my 1st time posting here as we just recently found out my father has GBM. I am 29 and have a 5 yr old daughter and a 9 month old son. My father is 59. So on to my fathers situation. My father had a seizure and wound up in the hospital. After MRI found a brain tumor. 5 days later he had a full resection and came out pretty good. Having some difficulties now but he's on the mend. Hopefully out of hospital soon. My mother is a few weeks removed from a major surgery herself and is trying to heal up and also be there for my father. I am 1 of 3 children but the only 1 within reasonable time to help my parents. I have to drive 45mins/ 1hr to get to their house/the hospital. Doctor told us 12 to 18 months even with treatment, which was very depressing. Just looking for some advice for a few different things. I am self employed and was wondering if there are any grants or anything out there to help me finically if I take time off to take care of my father. My mother has used all her PTO cause of her surgery and has to be back to work in a week and my father isn't even home yet. And also any info on helpful things to do to make things better for my dad.

HI Fightingson,

Sorry to hear about your dad; I'm approximately one year into my battle with GBM (left frontal parietal lobe).

No disrespect intended to the doctors, but they quoted you the average survival time following dx.  (They quoted me the same time).  However, not everyone is the same; I've had four MRIs since beginning treatment last April, and they've come back "clean", that is, no sign of recurrence.  I had one MRI in late June; the docs viewed the films in mid-July and said while there was no evidence of recurrence, it was an eventuality.  Then I had another MRI end of September, again no sign of recurrence; the docs changed their tune from "when it comes back" to "if it comes back".  Welcome news!  My other MRIs have been clear also.  Don't know of any grants, but tell your dad not to give up.  We're close in age (I'm 54) and there are survivors out there with even more time.  Good luck and keep us posted!

RE: Father has GBM

by Fightingson on Thu Feb 21, 2013 04:11 AM

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Hey NatMom we are in Ohio and his tumor was in the right temporal lobe but it was pretty deep. I haven't found any grants yet, but as I said when my father gets home my mother will have to go back to work. The thought of him coming out of the hospital to being home the majority of the day by himself after going through all this is not a good one. I just feel like if I were to able to stop by every or every other morning and visit or help take him to his appointments would be huge. Fact of the matter is though without financial help its going to be very hard on me. Being self employed every minute I'm not working is a minute I can't make money and with no PTO or disability time it's difficult. It's already hard on my family as I leave my wife and children after I work to go and help my mother. A friend of mine said just continue to pray. He said if your there for your family and keep praying things will work themselves out. Your bills won't be a problem cause things will work. So I asked my boss if I could come in late tomorrow and I'm going to see my dad in the hospital and take him his favorite lunch. Him nor my mother know I'm coming so hopefully the surprise will make him happy for a lil while.

RE: Father has GBM

by Bruce_Edward on Thu Feb 21, 2013 01:12 PM

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Hi,

Forget those dang statistics!!! My daughter is a 5 year GBM survivor and living life! She had surgery,raditation, and temodar. She's doing great! Soon to be a bride! Prayers for your family...Have FAITH!

Bruce

RE: Father has GBM

by MiasMom on Sat Feb 23, 2013 04:56 AM

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So sorry to hear of your father's diagnosis.  My husband was 59 when diagnosed too.

I am aware of no grants but recommend that you start the social security disability paperwork for your father.  GBM is a diagnosis that gets fast-tracked for approval from social security.   At least your parents would have that income coming in to help with expenses.

Also, the Family Medical Leave Act permits up to 12 weeks of leave (paid or unpaid) in a 12 month period for care of family members with a serious health condition.  If your mother has not used all of the 12 weeks for her own medical condition, she could request leave for care of your father.  It may not be paid leave, but she would be able to care for him.

Best wishes to you and your family

RE: Father has GBM

by flfrog on Sun Feb 24, 2013 09:13 PM

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I am so sorry you are having to go through this.  I had a one year old daughter when my dad was diagnosed and I know how exhausting it can be trying to be there for everyone.  Please take care of yourself and remember you have a family that needs you so you have to keep yourself strong for everyone!

I am not sure of any grants. I know that your dad is eligible for social security disability and it starts paying 6 months after diagnosis and it's a fast tracked claim or at lease it was in 2007 when we applied for my dad.

I believe there is something through medicaid where they pay you to take care of your dad instead of him having to go into a facility but I've only vaguely heard of that and don't know if it actually exists or what it requires.  I know there is also help through drug companies to pay for his medications and your local charities such as United Way might be able to help.  Maybe if he gets the help then your parents could help with your finances? 

Hang in there, the future is uncertain but when everything is over you'll have your memories and knowledge that you did all you could for your dad.

RE: Father has GBM

by alexyj23 on Fri Mar 01, 2013 04:49 AM

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Not sure of any grants.  My dad is 55 and was diagnosed April of 2012.  His is also in his temporal lobe, but was not able to get operated on due to the risks.  Just recently he found out another tumor appeared.  What I do know is your parents can file a homestead exemption for disablity and that will lower their property taxes a lot if they own a home.  I am 27 with a kid on the way so I understand what you are going through.  If you ever need to talk I am here!

Keep praying for the best and enjoy every day we are blessed with!

RE: Father has GBM

by Fightingson on Mon Mar 11, 2013 07:03 PM

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Sorry no updates lately, I have been very busy. My dad has been home for 2 weeks now and seems to be doing pretty good. Still hasn't started his chemo or radiation treatments yet(not 100% sure why, mom says paperwork issues). Visited yesterday and he asked if I had gotten my fishing license yet and that he was getting his this week. Deff a good feeling for me to know he's motivated to get out and do our annual spring fishing. My mother did find out that he does not qualify for Social Sec disability due to the fact of my dad being self employed/ unemployed for a good period of time before this all happened. Me I'm more confused now than ever. My mom has told me to slow down on the research and let this situation do what it's going to do, I think my dad told her to tell me that. My wife told me to go see a doctor due to what she says she thinks is anxiety. We were shopping the other day and I got kinda dazed/confused/frustrated, don't know why and she said your stress is going to cause a heart attack. So it now time for me to find a way to relax my mind from all this and understand my 2 hands can't fix this problem, which as my wife always tells me, is my biggest flaw.

RE: Father has GBM

by alexyj23 on Mon Mar 11, 2013 10:06 PM

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That is so great that he is wanting to still do his fishing trip.  For my dad that is still a struggle to go on about his daily routines.  We are trying to get him to go on a little vacation to Florida with us after his grandson is born, but he is on the fence.  Make sure to bring a little camera/camcorder on the fishing trip and let us know how it goes!  

May God Bless everyone affected by GBM

~Ashley H.

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