Dear Terri,
Without question your daughter is way too young to be going through all this. We know from your posts a little of how you are. What state of mind is your little girl in? I'm not trying to be insensitive, but is she doing what she wants as far as treatments etc? Or doing what she feels she must to appease those around her?
To go through all she has. What a brave lady. I hope she can still find moments to smile or enjoy.
Vicki
Forums
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Palliative & hospice care
TerriJ
Make the most of every moment you have remaining with your daughter a joyful, happy one for her and you family. It will create positive memories, not just sadness. It will be precious time worth spent. We all need to have a good end, whatever our age.
Edna
Make the most of every moment you have remaining with your daughter a joyful, happy one for her and you family. It will create positive memories, not just sadness. It will be precious time worth spent. We all need to have a good end, whatever our age.
Edna
Re: Palliative & hospice care
Well said Edna. That is what I was trying to say too.
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Palliative & hospice care
Terrij - I admire your strength and bravery in sharing your family story with us. Let me give back to you by embedding your stories in my heart as I pray for your continued strength and bravery. I know that your daughter is ever so grateful to have the support at each step of this journey. I am reminded again at the insidious nature of this disease which we have been afflicted with, and the choices we are confronted with.
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computerteacher - Name: Computer Teacher
- Who do you know with myeloma?: self
- When were you/they diagnosed?: November/December 2014
- Age at diagnosis: 58
Re: Palliative & hospice care
Vicstir, in this whole journey of myeloma, her father and I have tried to not influence her decisions over treatments . The doctors have explained realistically what the prognosis is, and she has chosen to fight for a little more time by taking the 2 drugs.
When she relapsed last year, we knew this journey would be more difficult. Some things worked and some only for a short time. Plans for an allo transplant or T cell therapy fell through because treatments and disease ravaged her body. Since July they have found plasmacytomas on her trachea, ribs, lungs, and spine. The effects of this have made it difficult to lead a normal life.
I have come to a level of acceptance because I don't want to see her suffer. She has always been a strong young woman. Of course it is hard to wrap your head around death, but she just wants to come home. We hope to accomplish this in the next couple weeks.
I thank everyone for their thoughts and prayers.
When she relapsed last year, we knew this journey would be more difficult. Some things worked and some only for a short time. Plans for an allo transplant or T cell therapy fell through because treatments and disease ravaged her body. Since July they have found plasmacytomas on her trachea, ribs, lungs, and spine. The effects of this have made it difficult to lead a normal life.
I have come to a level of acceptance because I don't want to see her suffer. She has always been a strong young woman. Of course it is hard to wrap your head around death, but she just wants to come home. We hope to accomplish this in the next couple weeks.
I thank everyone for their thoughts and prayers.
Re: Palliative & hospice care
It is truly heartbreaking to read this, Terrij. You and your family are in my thoughts and I very much hope that your daughter finds the kind of peace in your home that would elude her in a hospital and that this, in turn, brings you and your family some measure of comfort in a difficult time.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Palliative & hospice care
Hi Terryj,
I'm so sorry about your daughter's condition. As a parent, I can only imagine how hard it must be for you to see your daughter deal with the evils multiple myeloma is throwing at her. This is supposed to be an "old person's" disease. It's truly unfair that your daughter was struck with such an aggressive form of it at such a young age.
Thank you for sharing your daughter's and your journey with us. It's not easy for us to read the details of what your daughter is going through. But I'm sure it's even harder for you to write those details.
I hope that the Beacon community is able to comfort you, and perhaps your daughter. We're thinking of both of you and the rest of your family.
Mike
I'm so sorry about your daughter's condition. As a parent, I can only imagine how hard it must be for you to see your daughter deal with the evils multiple myeloma is throwing at her. This is supposed to be an "old person's" disease. It's truly unfair that your daughter was struck with such an aggressive form of it at such a young age.
Thank you for sharing your daughter's and your journey with us. It's not easy for us to read the details of what your daughter is going through. But I'm sure it's even harder for you to write those details.
I hope that the Beacon community is able to comfort you, and perhaps your daughter. We're thinking of both of you and the rest of your family.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Palliative & hospice care
Sorry Terrij. 36 and in palliative care ... that's screwed
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Palliative & hospice care
Thank you for your responses.
A little bit of info that I never realized could happen. In July when they found the plasmacytoma on her trachea, they tested its genetics and it shrunk after the 2 treatments of DCEP. Apparently the chemo did not effect the myeloma in her lung and the plasmacytoma was growing on her spine at the same time. We have been told that apparently these plasmacytomas have different gene mutations than the trachea plasmacytoma.
I understood the myeloma could turn into a different mutation and outsmart treatments, but I didn't realize you could have different mutations going on in your body at the same time. I guess that is what aggressive disease is.
A little bit of info that I never realized could happen. In July when they found the plasmacytoma on her trachea, they tested its genetics and it shrunk after the 2 treatments of DCEP. Apparently the chemo did not effect the myeloma in her lung and the plasmacytoma was growing on her spine at the same time. We have been told that apparently these plasmacytomas have different gene mutations than the trachea plasmacytoma.
I understood the myeloma could turn into a different mutation and outsmart treatments, but I didn't realize you could have different mutations going on in your body at the same time. I guess that is what aggressive disease is.
Re: Palliative & hospice care
Dear Terrij
I am so sorry your family has to endure this pain. I lost my husband early this year and reading your story has brought all the memories flooding back. I pray for you that your family can find peace. I will keep hoping that the treatment your daughter is having will work. Because we all need hope. Wishing your family all the best. Sometimes life is not fair.
I am so sorry your family has to endure this pain. I lost my husband early this year and reading your story has brought all the memories flooding back. I pray for you that your family can find peace. I will keep hoping that the treatment your daughter is having will work. Because we all need hope. Wishing your family all the best. Sometimes life is not fair.
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Wayne - Name: Wayne
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Nov,2013
- Age at diagnosis: 59
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