Comments on: Please pray for my brother http://joshrobinson.cc/2008/05/27/please-pray-for-my-brother/ Ministry, Life, and Leadership Thu, 02 Feb 2012 23:52:00 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: naturallyopinionated http://joshrobinson.cc/2008/05/27/please-pray-for-my-brother/comment-page-1/#comment-91 naturallyopinionated Sat, 14 Jun 2008 03:29:15 +0000 http://joshrobinson.wordpress.com/?p=111#comment-91 I just said a prayer for your brother, and your entire family. I was touched by your deep love for him, and the Lord. God bless you. ~Lori I just said a prayer for your brother, and your entire family. I was touched by your deep love for him, and the Lord. God bless you.

~Lori

]]> By: henry zittrower http://joshrobinson.cc/2008/05/27/please-pray-for-my-brother/comment-page-1/#comment-90 henry zittrower Wed, 28 May 2008 00:02:34 +0000 http://joshrobinson.wordpress.com/?p=111#comment-90 praying for you and your brother. Thank you for sharing...henry and frances praying for you and your brother. Thank you for sharing…henry and frances

]]> By: Mary http://joshrobinson.cc/2008/05/27/please-pray-for-my-brother/comment-page-1/#comment-89 Mary Tue, 27 May 2008 17:50:49 +0000 http://joshrobinson.wordpress.com/?p=111#comment-89 Hi Josh, I just said a prayer for Jordan. I get google alerts for "sarcoma," which led me to your post. I'm sorry to hear that your brother's tumor is growing. I lead a support group for adult bone sarcoma patients and survivors. We have a gal who had Ewing's sarcoma at her ankle, and she was told that an expert may be able to save her leg, but that it would be really hard to use afterwards. That ankle is a tricky small joint that does a big job! Anyway, she had a below-the-knee amputation and is doing really well! She's able to keep up with her toddler and everything. People with BTK amputations seem to have excellent function with minimal long-term pain. I read about them running marathons and such. It sounds like your brother would be one of those people if he needs an amputation. I had limb salvage at my shoulder, and I am very thankful for my arm. These things aren't easy decisions, as I am left with limited function and a good deal of pain, but I have great hand function! It really is a cost/benefit decision, and each person might see it differently. Hopefully the doctors will have a clear recommendation for the best long-term results. I don't know where your brother is being treated, and I know they say they are consulting with other doctors, but sometimes it's good to get a second opinion when sarcoma is not responding to treatment. The Sarcoma Alliance will refund up to $1,000 of expenses related to travel and cost of a second opinion with a sarcoma specialist. Some of the major sarcoma centers are known for their excellent work with adult sarcoma patients. More information about the expense reimbursement program and sarcoma centers is here: http://www.sarcomaalliance.org/assistance.html Much hope, Mary Sorens Hi Josh, I just said a prayer for Jordan.

I get google alerts for “sarcoma,” which led me to your post. I’m sorry to hear that your brother’s tumor is growing. I lead a support group for adult bone sarcoma patients and survivors. We have a gal who had Ewing’s sarcoma at her ankle, and she was told that an expert may be able to save her leg, but that it would be really hard to use afterwards. That ankle is a tricky small joint that does a big job! Anyway, she had a below-the-knee amputation and is doing really well! She’s able to keep up with her toddler and everything.

People with BTK amputations seem to have excellent function with minimal long-term pain. I read about them running marathons and such. It sounds like your brother would be one of those people if he needs an amputation.

I had limb salvage at my shoulder, and I am very thankful for my arm. These things aren’t easy decisions, as I am left with limited function and a good deal of pain, but I have great hand function! It really is a cost/benefit decision, and each person might see it differently. Hopefully the doctors will have a clear recommendation for the best long-term results.

I don’t know where your brother is being treated, and I know they say they are consulting with other doctors, but sometimes it’s good to get a second opinion when sarcoma is not responding to treatment. The Sarcoma Alliance will refund up to $1,000 of expenses related to travel and cost of a second opinion with a sarcoma specialist. Some of the major sarcoma centers are known for their excellent work with adult sarcoma patients. More information about the expense reimbursement program and sarcoma centers is here: http://www.sarcomaalliance.org/assistance.html

Much hope,
Mary Sorens

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