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my son’s journey thus far…

Forums General Melanoma Community my son’s journey thus far…

  • Post
    kim2712
    Participant

    My son Erik was dx stage 3c in August of 2004 while in basic training at Fort Sill. He had a full neck dissection and did one year of interferon. He was going to University of Michigan. Loved the doc there and still do. On March 7th his right lung collapsed 100%. Full of fluid they put in a chest tube, after a week and several attempts to clamp the tube his lung failed to respond. On March 14th they did vats surgery and found hundreds of tumors in his lung, pleura, chest cavity and chest wall.

    My son Erik was dx stage 3c in August of 2004 while in basic training at Fort Sill. He had a full neck dissection and did one year of interferon. He was going to University of Michigan. Loved the doc there and still do. On March 7th his right lung collapsed 100%. Full of fluid they put in a chest tube, after a week and several attempts to clamp the tube his lung failed to respond. On March 14th they did vats surgery and found hundreds of tumors in his lung, pleura, chest cavity and chest wall. They got him stable enough to go home (March 21st) and seek the care of a Melanoma specialist. We saw someone at University hospital in Cleveland, The Cleveland Clinic and his old doc at U of M. My son decided to go with his doc at U of M, stated "he cured me once he will do it again". The day after that appt. on March 31st  Erik started coughing up blood and was very short of breath, I was with him and called 911 to take him to the local hospital here in Toledo. After they put a tube in his chest, did scans, etc..The cancer had already spread into the diaphragm, ribs, muscle along the spine and one spot on the spine L1. Once they got him stabilized they took him by ambulance to the Cleveland Clinic. He spent 18 days there, once stable enough they started a treatment. 3 days 6 mcg interferon followed by 2 days of cisplatin, venblastine and dicarbozine. While there, after the treatment the horrible swelling started, first his abdomen, then all the way to his feet within a day. His poor testicles are the size of a cantaloupe. They did numerous scans, cancer spread again into liver and surrounding areas. They found that the inferior vena cava was compressed and thought that might be the reason for the swelling. They decided to do a procedure to put a metal stint in the artery, the compression was at the very top, widest point of the artery, so this was going to be tricky due to the risk of the stint going into the heart. After doing the fluoroscopy, they found there was still some adequate blood flow from that artery, a large tumor is the cause of the compression, because there was still blood flowing they didn't risk the stint. They decided due to yet more scans that likely the swelling is lymphatic and therefore nothing they can do other than wait and see if the chemo will do it's job. They allowed him to come home on April 21st. He has been pouring in the protein shakes in hope of reducing the swelling, no luck yet. He is also back to coughing up bloody phlegm.

    I consulted with his onc at U of M because I trust him totally and can't get the answers I need from the cleveland docs. He said they are making a valiant attempt at saving him, and that's all that can really be done for him in his current condition. I asked him if he has ever seen anyone survive that is as advanced as Erik, and he said no. He thinks a couple months at most is what I have with my son. I know there are miracles out there and they happen every day. But I am so scared, how does a mother prepare for this?

    Ughhh, I HATE this insidious disease….

    Peace and blessings to all and thank you for listening.

    Kim

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  • Replies
      Laurie from maine
      Participant

      HI,

      I am so sorry.   no mother or father can prepare themselves for something like you are going thru.  My heart is breaking for you.  I am sure you being with him is a blessing for him as you can help him thru this.  Please know my heart and prayers are with you.

      laurie from maine

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      Laurie from maine
      Participant

      HI,

      I am so sorry.   no mother or father can prepare themselves for something like you are going thru.  My heart is breaking for you.  I am sure you being with him is a blessing for him as you can help him thru this.  Please know my heart and prayers are with you.

      laurie from maine

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        kim2712
        Participant

        Thank you so much!

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        kim2712
        Participant

        Thank you so much!

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      shellebrownies
      Participant

      My prayers will be with you as well. My husband was only recently diagnosed and we are still waiting official confirmation  of Stage IIIC or Stage IV, so we are only beginning this path you are on. 

      Remember that no matter what, no one has an expiration date on their forehead; people outlive expectations every day. Your son sounds like quite a fighter; I hope and pray he will be that exception!

      Michelle, wife of Don (stage IIIC for the time being)

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      shellebrownies
      Participant

      My prayers will be with you as well. My husband was only recently diagnosed and we are still waiting official confirmation  of Stage IIIC or Stage IV, so we are only beginning this path you are on. 

      Remember that no matter what, no one has an expiration date on their forehead; people outlive expectations every day. Your son sounds like quite a fighter; I hope and pray he will be that exception!

      Michelle, wife of Don (stage IIIC for the time being)

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        kim2712
        Participant

        My son will fight until the end, I have no doubt about that. Good luck to you and your husband!

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        kim2712
        Participant

        My son will fight until the end, I have no doubt about that. Good luck to you and your husband!

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      Carol Taylor
      Participant

      Oh Kim,

      I'm so sorry for what you and your son are going through. Our friend who posted earlier was right, there's no way to prepare for this. As you know, we aren't given manuals with our children when they're born. Yes, there are miracles and there is always hope, but sometimes they just don't take the form we wish they would.

      Right now, you may want to remember that we really don't have expiration dates on us and doctors really don't know how long someone has. Kim, I've been a Hospice chaplain and while you don't mention that your son is on Hospice right now, may I advise that you look up your local chapter and make an appointment with the chaplain?  If you don't want to do that, I'm available online to help walk you through this. You can reach me either through the Melanoma Prayer Center (link below) or [email protected]

      As a Methodist pastor, this is a time I'm familiar with. While nobody really knows what the future holds for your son, doctors have seen enough to have a fairly decent idea of what's happening and unless there is that miracle, their time frame is sometimes fairly accurate…but, I've seen people given two weeks and that turned into ten years and even then they didn't die of the condition but of something else.

      BE scared, that's perfectly OK and if you weren't scared, something would be horribly wrong.  That said, look to be the miracle instead of looking for a miracle. Frankly, your son is probably experiencing a very different fear, again, where a Hospice chaplain might come in handy…for your son to talk to.

      Oh Lord, Your mercy is here with Kim and her son, walk with them both through this time. There are miracles, please provide. There is hope, please provide. Just provide…whatever is needed, when it is needed and whoever is needed. Bring peace with Your healing wings. You understand what Kim is going through and You alone knows what she needs. Please provide. Amen.

      Holding you and your son in prayer, Kim. Bless you both.

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      Carol Taylor
      Participant

      Oh Kim,

      I'm so sorry for what you and your son are going through. Our friend who posted earlier was right, there's no way to prepare for this. As you know, we aren't given manuals with our children when they're born. Yes, there are miracles and there is always hope, but sometimes they just don't take the form we wish they would.

      Right now, you may want to remember that we really don't have expiration dates on us and doctors really don't know how long someone has. Kim, I've been a Hospice chaplain and while you don't mention that your son is on Hospice right now, may I advise that you look up your local chapter and make an appointment with the chaplain?  If you don't want to do that, I'm available online to help walk you through this. You can reach me either through the Melanoma Prayer Center (link below) or [email protected]

      As a Methodist pastor, this is a time I'm familiar with. While nobody really knows what the future holds for your son, doctors have seen enough to have a fairly decent idea of what's happening and unless there is that miracle, their time frame is sometimes fairly accurate…but, I've seen people given two weeks and that turned into ten years and even then they didn't die of the condition but of something else.

      BE scared, that's perfectly OK and if you weren't scared, something would be horribly wrong.  That said, look to be the miracle instead of looking for a miracle. Frankly, your son is probably experiencing a very different fear, again, where a Hospice chaplain might come in handy…for your son to talk to.

      Oh Lord, Your mercy is here with Kim and her son, walk with them both through this time. There are miracles, please provide. There is hope, please provide. Just provide…whatever is needed, when it is needed and whoever is needed. Bring peace with Your healing wings. You understand what Kim is going through and You alone knows what she needs. Please provide. Amen.

      Holding you and your son in prayer, Kim. Bless you both.

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        Becky
        Participant

        Oh Kim my heart is breaking for you as well. My 22 year old son is stage 3A , dx in 2009. I hate this disease so much.

        Keep fighting

        Becky

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        Becky
        Participant

        Oh Kim my heart is breaking for you as well. My 22 year old son is stage 3A , dx in 2009. I hate this disease so much.

        Keep fighting

        Becky

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        kim2712
        Participant

        Thank you Carol. I have a fantastic therapist that I have been seeing for years now, she really helps me, for now. I know that hospice isn't far off and when the time is right, I will turn to them for both my son and my family. My son, at this point would be devistated to speak to hospice, he isn't fully aware, or at least is denying how advanced and aggressive his cancer is.

        Thank you so much for the prayer and thoughts,

        Peace and blessings,

        Kim

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        kim2712
        Participant

        Thank you Carol. I have a fantastic therapist that I have been seeing for years now, she really helps me, for now. I know that hospice isn't far off and when the time is right, I will turn to them for both my son and my family. My son, at this point would be devistated to speak to hospice, he isn't fully aware, or at least is denying how advanced and aggressive his cancer is.

        Thank you so much for the prayer and thoughts,

        Peace and blessings,

        Kim

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      boot2aboot
      Participant

      my heart just breaks reading this…i pray that your son and you get through this with grace, serenity and peace…

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      boot2aboot
      Participant

      my heart just breaks reading this…i pray that your son and you get through this with grace, serenity and peace…

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      DebbieH
      Participant

      My heart is breaking as I read this terrible news Kim.  I remember meeting you and Erik at U of M.  Erik's neck dissection was still healing and I remember he was so handsome and so healthy looking in spite of what he just went through.  I hate what this disease does and I wish I could say something, anything, to help.   I don't pray much but I will pray that Erik gets the miracle he needs, 

      DebbieH

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        kim2712
        Participant

        Hi Debbie,

        I wondered if you were still on this board. How are you doing? Still stage 3 I hope.

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        kim2712
        Participant

        Hi Debbie,

        I wondered if you were still on this board. How are you doing? Still stage 3 I hope.

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      DebbieH
      Participant

      My heart is breaking as I read this terrible news Kim.  I remember meeting you and Erik at U of M.  Erik's neck dissection was still healing and I remember he was so handsome and so healthy looking in spite of what he just went through.  I hate what this disease does and I wish I could say something, anything, to help.   I don't pray much but I will pray that Erik gets the miracle he needs, 

      DebbieH

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      James from Sydney
      Participant

      I pray that the chemo combo buys you some time, i know how you feel our son went through the same thing a couple of years ago, its so so painful to watch your child go through this. You are tired and your head is spinning with all sorts of things, take a deep breath get some nourishment into you and rest so you can be of maximum benefit to your son.

      Hopefully they can stabilize him and get some improvement with the Chemo, if that is possible see if they will try one of the Inhibitors they seem to work very quickly in those who obtain a response. Ask about BRAF, MEK and E7080 and see if one of them is possible. I will be thinking of you and praying for a turnaround.

       

      best wishes

      James

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        kim2712
        Participant

        James,

        I am deeply sorry that you had to go through this with your son. And I see you know all to well the loss of appetite and sleep as we watch our child go through this. I am forcing little bits of food down a few times a day, and the sleeping is getting better with the help of melatonin.

        They sent his blood out to check to see if he is positive for any of those. He continues to get worse this week, I imagine we will be back in the hospital before the week is out.

        Peace and blessings to you,

        Kim

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        kim2712
        Participant

        James,

        I am deeply sorry that you had to go through this with your son. And I see you know all to well the loss of appetite and sleep as we watch our child go through this. I am forcing little bits of food down a few times a day, and the sleeping is getting better with the help of melatonin.

        They sent his blood out to check to see if he is positive for any of those. He continues to get worse this week, I imagine we will be back in the hospital before the week is out.

        Peace and blessings to you,

        Kim

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      James from Sydney
      Participant

      I pray that the chemo combo buys you some time, i know how you feel our son went through the same thing a couple of years ago, its so so painful to watch your child go through this. You are tired and your head is spinning with all sorts of things, take a deep breath get some nourishment into you and rest so you can be of maximum benefit to your son.

      Hopefully they can stabilize him and get some improvement with the Chemo, if that is possible see if they will try one of the Inhibitors they seem to work very quickly in those who obtain a response. Ask about BRAF, MEK and E7080 and see if one of them is possible. I will be thinking of you and praying for a turnaround.

       

      best wishes

      James

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      Janis B.
      Participant

      This is an unimaginable heartache.  My prayers for you both, for the strength and grace to support you in this fight.

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      Janis B.
      Participant

      This is an unimaginable heartache.  My prayers for you both, for the strength and grace to support you in this fight.

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      King
      Participant

      Kim,

      I am so sorry to read all this sad news.   I remember you and Erik from 2004.  That is the same year that I was diagnosed and Erik and I were doing Interferon some of the same months.

      I pray and hope for a miracle.  Meanwhile, would you consider consulting with Hospice to see what support and services they could provide?  Remember, it's not giving up.  However, they deal with people of all ages with widespread disease.  They might be able to answer some of your questions and concerns and keep Erik comfortable.

      I am so, so sorry.

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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        kim2712
        Participant

        King,

        I am happy to see that you are doing well. Hospice is probably only a short time away. and yes, we will be turning to them as soon as my son accepts this.

        Keep up the fight!

        Kim

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        kim2712
        Participant

        King,

        I am happy to see that you are doing well. Hospice is probably only a short time away. and yes, we will be turning to them as soon as my son accepts this.

        Keep up the fight!

        Kim

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      King
      Participant

      Kim,

      I am so sorry to read all this sad news.   I remember you and Erik from 2004.  That is the same year that I was diagnosed and Erik and I were doing Interferon some of the same months.

      I pray and hope for a miracle.  Meanwhile, would you consider consulting with Hospice to see what support and services they could provide?  Remember, it's not giving up.  However, they deal with people of all ages with widespread disease.  They might be able to answer some of your questions and concerns and keep Erik comfortable.

      I am so, so sorry.

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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      MaryD
      Participant

      Kim – I'm so sorry that you and your son have to go through all of this  – just so difficult.  As others have suggested, Hospice may be a great help to you right now in this journey.    I am going to pray for those miracles but in the meantime hope that Erik can be as comfortable as possible.

      Sending love and prayers . .

      Mary

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        kim2712
        Participant

        Thank you Mary!

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        kim2712
        Participant

        Thank you Mary!

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      MaryD
      Participant

      Kim – I'm so sorry that you and your son have to go through all of this  – just so difficult.  As others have suggested, Hospice may be a great help to you right now in this journey.    I am going to pray for those miracles but in the meantime hope that Erik can be as comfortable as possible.

      Sending love and prayers . .

      Mary

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      FormerCaregiver
      Participant

      I am deeply saddened to read of what Erik has had to endure. Melanoma challenges us
      emotionally, physically, and spiritually. It is a horrible disease can quickly devastate
      one's world, and the world of our loved ones.

      I know of a couple of other people who are in similar situations to what you son is in at the
      moment. You asked about preparing for the chance that the worst might happen. When my late
      wife was losing her battle, I found that persistent prayer always helped. I really believe
      that although God won't necessarily prevent tragedies happening, he will always help us to
      cope if we have sufficient faith.

      You and Erik are in my thoughts and prayers.

      Frank from Australia

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      FormerCaregiver
      Participant

      I am deeply saddened to read of what Erik has had to endure. Melanoma challenges us
      emotionally, physically, and spiritually. It is a horrible disease can quickly devastate
      one's world, and the world of our loved ones.

      I know of a couple of other people who are in similar situations to what you son is in at the
      moment. You asked about preparing for the chance that the worst might happen. When my late
      wife was losing her battle, I found that persistent prayer always helped. I really believe
      that although God won't necessarily prevent tragedies happening, he will always help us to
      cope if we have sufficient faith.

      You and Erik are in my thoughts and prayers.

      Frank from Australia

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