[Terrij]

Palliative & hospice care

by Terrij on Tue Sep 29, 2015 6:51 pm

Many of you have followed my daughters story. We are now preparing to take her home to our house, the house she grew up in.

Much has happened since July 6 when things began to spiral out of control. July, an emergency tracheotomy for a plasmacytoma on her trachea, followed by a round of DCEP high-dose chemo. Beginning of August, another round of DCEP, which did not bring the numbers down much. It was discovered mid August that her left lung was filled with myeloma, causing fluid build up for which she now has a chest tube.

September 1 we were told she has a plasmacytoma on her spine which is causing her to not be able to stand or walk. Radiation was done, but after 3 weeks in a physical rehab place there is not much improvement.

The T cell trial is off the board now. Penn has given her the choice of less toxic drugs, which would give her 6 to 8 months, or if she does nothing, about 2 months. At 36, she has chosen to try the 2 drugs, so we are going home. She has lived in Philly since she was 18 and started college. I know she will miss it.

4 years ago when she was diagnosed, I had never heard of this disease and now I know more than I ever wanted to. We have experienced a lot of the bad things of the disease since she relapsed 18 months ago. The doctors and nurses at Jefferson and Penn have been wonderful through this whole thing. Not only taking care of us physically, but many times comforting me. I read with envy of those who have been in remission for so long, but I do know for many it is a battle every day.

[Rneb]

Re: Palliative & hospice care

by Rneb on Tue Sep 29, 2015 6:56 pm

Damn.
Discouraging news, to be sure.

Be strong, and enjoy your time together.

Best of Luck.

[Spirit]

Re: Palliative & hospice care

by Spirit on Tue Sep 29, 2015 6:57 pm

Terrij, I am so saddened to read your post. My prayers are with you, your daughter, and your entire family.

[Multibilly]

Re: Palliative & hospice care

by Multibilly on Tue Sep 29, 2015 7:13 pm

Terri,

This news just breaks my heart. I simply can't imagine the emotions I would experience if one of my children developed something like multiple myeloma ... but I'm glad that you will all be together at home.

[Nancy Shamanna]

Re: Palliative & hospice care

by Nancy Shamanna on Tue Sep 29, 2015 7:25 pm

I am so sorry to hear this news, Terri. I hope that your family spends some good time together now, and that the two drugs do help with your daughter's myeloma. My thoughts and prayers are with you all.

[Cheryl G]

Re: Palliative & hospice care

by Cheryl G on Tue Sep 29, 2015 7:36 pm

I'm so very sorry that events have taken this turn, Terri. I know from all you've written here in the past how difficult an ordeal this has been for your daughter and your entire family. I am glad you will all be together in the coming months, and I hope the 2-drug treatment your daughter will be receiving works out well for her.

Wishing you all the best,
Cheryl

[JPC]

Re: Palliative & hospice care

by JPC on Tue Sep 29, 2015 8:01 pm

Hello, TerriJ

Thank you very much for your update. You and your daughter are in our prayers. At this stage, we are praying for a miracle based on your news. We hope such a miracle happens. Sometimes it does. God bless your family.

[SlimMoe]

Re: Palliative & hospice care

by SlimMoe on Tue Sep 29, 2015 8:35 pm

My heart is heavy with the reading of your words. My prayers are with you and your family. I'm glad that she is willing to fight a little more. Good luck.

[Mark11]

Re: Palliative & hospice care

by Mark11 on Tue Sep 29, 2015 8:40 pm

TerriJ,

I am so sorry to read this news. I have mentioned to you before that both of my parents are still alive. I could not imagine them going through what you are going through now. Prayers to you and the family. Your daughter is extremely fortunate to have the parents she has.

Mark

[BeatMyeloma]

Re: Palliative & hospice care

by BeatMyeloma on Tue Sep 29, 2015 11:32 pm

I am so sorry, TerriJ. It seems like your daughter has not been able to catch a break. It is so, so unfair and WRONG. You and your daughter are in my prayers.