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Post by babylon5 on Nov 13, 2015 13:02:08 GMT -5
Some of you may know that my oldest son has been battling a rare form of cancer. It is called Rosai-Dorfman. He has a lesion in a part of his brain that can not be removed via surgery. The lesion has caused my son to lose most of his sight, the use of his left arm and he can no longer walk without someone else's support.
My son is 30 years old and he lives in Baltimore with his girl-friend. He is, or was an artist, he had a small, but popular heavy metal band which played regularly in Baltimore. He was active in his community. Now he is literally a shell of his former self.
He has been seen by specialist at John Hopkins and Sloan Kettering. He has been through steriod and radiation treatments and, for a while, he was a little better. But he has since regressed and the specialist told him tghis week that chemo probably won't work.
We are down to clinic trails with an experimental drug. But if that doesn't work...
My son has already stated that if the drug trails do not work, then he doesn't want to continue suffering. He is in constant pain and he is almost completely bed-ridden.
I don't think I have ever been in a more desperate and a more painful situation in my life.
I just needed to vent.
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Post by jbnewyork162 on Dec 4, 2015 13:16:29 GMT -5
Some of you may know that my oldest son has been battling a rare form of cancer. It is called Rosai-Dorfman. He has a lesion in a part of his brain that can not be removed via surgery. The lesion has caused my son to lose most of his sight, the use of his left arm and he can no longer walk without someone else's support. My son is 30 years old and he lives in Baltimore with his girl-friend. He is, or was an artist, he had a small, but popular heavy metal band which played regularly in Baltimore. He was active in his community. Now he is literally a shell of his former self. He has been seen by specialist at John Hopkins and Sloan Kettering. He has been through steriod and radiation treatments and, for a while, he was a little better. But he has since regressed and the specialist told him tghis week that chemo probably won't work. We are down to clinic trails with an experimental drug. But if that doesn't work... My son has already stated that if the drug trails do not work, then he doesn't want to continue suffering. He is in constant pain and he is almost completely bed-ridden. I don't think I have ever been in a more desperate and a more painful situation in my life. I just needed to vent. I'm sorry I'm getting to this late but you have my utmost prayers and thoughts. I can't imagine going though this time in your life watching your child suffer like this. I'm praying for a miracle. and parting for strength for the both of you during this time. I haven't checked the general board in ages so I did t see this at first. God bless you and you family Nic. |
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Post by garyd on Dec 4, 2015 17:58:42 GMT -5
Wow, I'm not sure what to say. I'm sorry to have missed your original post.
I will certainly keep your son and you in my prayers and as others said you are like kin, so your pain is ours. Anything you want to express and talk about we will do that.
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Post by ReneNYG1 on Dec 4, 2015 23:22:39 GMT -5
I just foundout Babs,I'm so sorry to hear what is going on.Let's hope these new drugs work hang in there my brother,estoy aki para ti mi hermano.
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Post by Deleted on Dec 5, 2015 0:17:19 GMT -5
Just found out Babs. I'm just sorry and saddened. You are right that this is as awful as it gets. But hang in there. the new drugs may be a miracle.
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Post by daglazer on Dec 5, 2015 8:40:17 GMT -5
Some of you may know that my oldest son has been battling a rare form of cancer. It is called Rosai-Dorfman. He has a lesion in a part of his brain that can not be removed via surgery. The lesion has caused my son to lose most of his sight, the use of his left arm and he can no longer walk without someone else's support. My son is 30 years old and he lives in Baltimore with his girl-friend. He is, or was an artist, he had a small, but popular heavy metal band which played regularly in Baltimore. He was active in his community. Now he is literally a shell of his former self. He has been seen by specialist at John Hopkins and Sloan Kettering. He has been through steriod and radiation treatments and, for a while, he was a little better. But he has since regressed and the specialist told him tghis week that chemo probably won't work. We are down to clinic trails with an experimental drug. But if that doesn't work... My son has already stated that if the drug trails do not work, then he doesn't want to continue suffering. He is in constant pain and he is almost completely bed-ridden. I don't think I have ever been in a more desperate and a more painful situation in my life. I just needed to vent. Nic, I just saw this. I am so sorry. I can only imagine what you must be feeling. Having a sick child is about the worst feeling in the world. Be strong my friend. |
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Post by pearl on Dec 5, 2015 10:09:48 GMT -5
Babs,
I only read of your son's situation last evening. I am praying for your son and your family. So sorry your family is going through this difficulty. We will all hope for the best for your son. Hang in there Babs.
Pearl
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Post by rxmeister on Dec 6, 2015 9:25:18 GMT -5
There are great medical advances made every day in this field, and I'm hoping this clinical trial will result in one of them. So sorry to hear about your son, Nic, and I'm praying for you and him and hoping that this treatment is successful.
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Post by goknicks6 on Dec 6, 2015 9:27:57 GMT -5
Hi Babs,
My name is Mitch and I only joined the group about a week ago. Yesterday morning I read your heartbreaking story and it touched me deeply in part, I guess, because I'm a parent with two grown sons.
I would like to share the following with you. I don't know if it will lead to anything positive but I know for sure that if I were in your shoes this is what I would do.
First, in 2014, 60 Minutes did a segment on Dr. Patrick Soon-Shiong titled, "The Billionaire Shaking up the World of Cancer." The doctor is known as Dr. Pat and he is a considered a genius. He's also the richest man in Los Angeles and has spent a billion dollars of his own money to develop a state of the art cancer lab. I would suggest that you view the segment on the internet and then contact him to see if he can help your son. Dr. Pat has prolonged the lives of patients with pancreatic cancer which is one of the most fatal cancers and one of the hardest to treat. I believe the survival rate is five percent or less. If you read the 60 Minutes piece you will see how Dr. Pat combines chemotherapy and proteins to fight cancer. Perhaps he knows something that the experts at Sloan and Hopkins don't.
Second, some years ago, The New York Times did a series of articles on cancer and cancer treatment in the United States. The first article dealt with how uneven treatment is in our country. It started off by describing the situation of a young woman on the west coast who was married and had a very young child. So she had a lot to live for. The woman consulted with a bunch of leading doctors in her area about her cancer. She needed surgery but all the oncologists said it was impossible to operate and that they would not do it. The woman, who was smart and dogged, would not take no for an answer. And so she searched the country until she found a doctor at John Hopkins who said that he believed he could operate successfully. He did and saved her life.
Your son has been to two of the world's leading cancer centers. So there is no doubt that he has received expert opinion. And, perhaps, the doctors are right and it is impossible to operate.
But, maybe, just maybe, there is a surgeon who doesn't concur with the doctors who have advised your son.
I wish I could give you more than the little above but, unfortunately, I can't. Needless to say, if you think I can be of any assistance to you, please contact me. My cell is 718 415 9723.
Embraces,
Mitch
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Post by babylon5 on Dec 8, 2015 23:48:57 GMT -5
Thank you.
Thank you all.
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Post by Deleted on Dec 19, 2015 4:29:19 GMT -5
Yo Babs. just letting you know I'm thinking about you.
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Post by babylon5 on Dec 22, 2015 16:58:35 GMT -5
Yo Babs. just letting you know I'm thinking about you. Gates, Thank you. You're the best! |
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Post by ReneNYG1 on Jun 5, 2017 16:31:23 GMT -5
Hey Babs I ask my mom to include him in her prayers she does that alot and she asked me his name,can you tell me so I can have her address her prayers the way she does,thanks like Bill said I can't imagine what your going through hang tough my friend.
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Post by babylon5 on Jun 10, 2017 8:55:43 GMT -5
Hey Babs I ask my mom to include him in her prayers she does that alot and she asked me his name,can you tell me so I can have her address her prayers the way she does,thanks like Bill said I can't imagine what your going through hang tough my friend. Thank you very much, Rene. His name is Renaldo Megna Perez. |
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Post by ReneNYG1 on Jun 14, 2017 21:28:36 GMT -5
Thanks I'll tell her night.I just told my mom and she will say his name in her prayers.As I my friend.Mom always have candles going for help and prays for help for your son and my brother's wife she has been holding up it works Babs hang in there strong.
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