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Old 06-19-2009, 09:20 AM   #1
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son has brain tumor

my wife and family are settling into the reality of my 20 year old son's cancer. Two weeks ago he went to mass general for what he thought was an ear infection.--after a cat scan and an emergency surgery, a baseball size tumor was removed. He is recovering and preparing for proton burst radiation with chemo. Later he will have 6-9 months additional chemo with several parts of it inpatient.
We managed to get to MGH before he was out of surgery and he is doing as well as can be expected.

The complication comes in that my wife is incurably ill with SREAT, an autoimmune disease that is attacking her brain. Currently when she is with our son and i have to be back in Colorado, i have arranged an additional caregiver for her. Normally when she is home, I care for her.

My son is still wrestling with the whole--having everything taken away from him and becoming dependent again--thing.
I know that everyone responds differently to radiation and chemo, but i am wondering what to expect, and what level of care I need to plan to provide.
the dr just told us last night that they are upping the Radiation and chemo to the highest possible level and that some brain damage is inevitable.

Can anyone give information on their own personal experience with this level of treatment, and what care was needed?
Obviously I will do what needs to be done, but I have a lot of "ducks" to get in a row to provide care for 2 people, and still take care of the rest of my family etc.

thanks, any help is appreciated.

 
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Old 06-20-2009, 06:16 AM   #2
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Re: son has brain tumor

I'm sorry I can't help you with your question. I just wanted to say how sorry I am for you and your family having to deal with so much. I will keep your wife and son in my thoughts and prayers.

 
Old 07-08-2009, 06:47 PM   #3
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Re: son has brain tumor

Hello

I am so sorry for your troubles.

Some years ago, I was treated at Mass General and I want you to know that treatment there is totally cutting edge. Your son is in great hands there.

My treatment was not in the brain so I am not able to answer your question. However, I would suggest that you put in a call to the treating doctors and ask them exactly what you have asked here. They are phenomenal doctors there and will answer all your questions. Also, the Social Sevices Dept there was so very helpful during my own time. They helped locate housing and things like that for us.

Please take care of yourself during this trying time in life. Make some time out for you. I have been on both sides of the cancer fence as both a patient and a caretaker. The jobs are equally hard, Friend.

Blessings to your entire family
reach

 
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