Hello, Found this site today and just joined.

My wife and I both are ER nurses. We have five children, our middle child, Ben, is 17 and has a brain tumor, blind, has had a stroke, and othe metabolic medical issues. We have been caring for him since the age of 6 months old when he was diagnosed and had surgery. Since then he has had t rounds of different chemo agents and 9 years ago had conformal radiation in St. Judes Children Hospital. He had been stable until July 2008 showed tumor growth at which time he had Gamma Knife treatment. He developed problems in the spring of 2009 after orthopeidic surguey for his contractions to reduce them some. Hethen wasadmitted for metabolic issues and found that his brain had sever edema and a large necrotic area that was probably triggered by surgery. His fatique became more pronounced and has not been able to put a full day of shool in for the past 1 1/2 years. Severl MRI's and another trip to St.Judes for testing in August and a plan of care. He has triet high does streiods but not too helpful. Currently he is getting Hperbaric Chamber Treatments daily 12-5. We should finish thee up Dec 8th then another MRI and replann the next move. Chemo may be the next step as surgery was said to be used as a last resort because of the risk. His first surgery was at the age of 6 months and this left him blind and a stroke. They could only get 70% because the main carotids runs through the center.
I am sorry to make this long but this is a short capture of our life. Ben is insured by my primary insurance and medical assistance which does cove codt up to now but the help we so desperately need is the cost of getting to where he nedds to go and extra thing not coveerd by insursnce. He currently gets picked up at scholl dailly and gets a meal and driven 50 miles to get his treatment for several hours then return home. Some days when on of us take off it is with out pay and hurts financially more. Wen have been usuing up all the saved money we have, cashed in our bonds long ago, used all lour savings and mutual funds up and the last trip to St. Judes in August 2009 I had to borrow against our life insurance to get a ticket to go with him. Re have refinanced our house and maxed out our credit cards over the years of treatment and have nothing left but he still need streatments. He will get SSID when he gets 18 and unfortunately because we work we do not fit into other programs. Frustrating! Things are very hard right now, the Holidays are coming up and we just need a break. We have been doing this for 17 years because it is our cross to carry and we covered expenses as best we could even at the cost of our other children with out taking vacations for years. I have begun a search just for assistance because there has to be something or someone that can help in our circumstance. Ben is in a regular school and a straight A student. He has gone through more in his life thatn what many will go through. If you can please help or know some who can tell them. My email is >Personal Info Removed<. I need someone who has delt with a loved one who has had a stroke, blind, brain tumor and knows the daily challenges delt with and who may be a little better financially off and would like to give or tell me of someplace to go. >Personal Info Removed< Can I count on somebody to get through these tough times ans assist with financial assistance/grants? Thank you.
Gary

I'm sorry for all you have to go through Gary. I live a short 45 minutes from St. Jude and volunteer some time there myself. I was also unaware that St. Jude's made you pay for your trip to the hospital. I am sure you stayed at the Ronald McDonald house, correct? Have you contacted Gilda's Club (http://www.gildasclubwesternpa.org/)?
Our innovative program is an essential complement to medical care, providing networking and support groups, workshops, education and social activities.This may be a great place to start for the assistance you are looking for.

While I am a nurse myself, I can appreciate what you have been going through. Unfortunately, however, times as you know are tough for everyone. We here at AMHD volunteer our time here to help others.

As a nurse yourself, I am sure you are aware of the Make A Wish Foundation, for one example. Unfortunately, you will not find financial assistance here. The great majority of us are dealing with our own debts as well, although they may not be as great as yours.

I'm sorry for all you have to go through Gary. I live a short 45 minutes from St. Jude and volunteer some time there myself. I was also unaware that St. Jude's made you pay for your trip to the hospital. I am sure you stayed at the Ronald McDonald house, correct? Have you contacted Gilda's Club (http://www.gildasclubwesternpa.org/)? This may be a great place to start for the assistance you are looking for.

While I am a nurse myself, I can appreciate what you have been going through. Unfortunately, however, times as you know are tough for everyone. We here at AMHD volunteer our time here to help others.

As a nurse yourself, I am sure you are aware of the Make A Wish Foundation, for one example. Unfortunately, you will not find financial assistance here. The great majority of us are dealing with our own debts as well, although they may not be as great as yours.

Thanks for the reply. What St. Judes does pay for is a child and a parent. The cost is when life altering events are going on with my son and I make the trip with them. This is the expense. We also are provided room and board and food for him so that is not the expense but when we drive 75 miles to the air port and need to stay overnight at a hotel that will keep our car( the cheapest way) the we have the expense of the drive, the hotel and usually a meal then my ticket then the drive back. All of this is not covered and this is the added expense incurred sometimes seveal times a year and also several trips to Pittsburgh, 75 miles one wy, several times a year. It adds up month after month and year after year.
Thank you for alll you do to volunteer and other things you may have done to help others. I will search whatever is brought up by anybody to try. We just seem to fall into areas of the "crack" where we make money and then we don't falll into any areas of help but when you pay several thousand out of pocket yearly it runs out.
Open for other replies.
Thank you.