It is with sadness and a heavy heart that we were told that my niece would die shortly from this lupus flare.
Her body has swollen so much that she covers the whole bed. It is so hard to look at her swollen body and not see the beautiful person that I know. It rips my heart to pieces to hear her children beg her to please wake up.........but she doesnt hear them.
She has encephalitis. Her brain is swollen and MRI shows no brain activity.
She has been having seizures, blood clots, problems with bowels and kidneys.
Her long beautiful hair is now falling out in clumps from the chemo.
So many meds have been given to her in a last ditch effort to save her.
Her doctor said that he would remove the ventilator soon. We don't want to let go but it is so hard to look at her.
We were told that she has the rarest form of Lupus and that no one has ever lived long with it after being in a major flare. She has known that she had Lupus for around 2 years but her doctor now says that she wasn't under good care for those 2 years.
My heart is sad. She was always a happy person.
I'm so sorry to hear of your niece's condition. It saddens me greatly that her doctors didn't have this young lady on meds to control her symptoms/disease.
Dear Season:
So sorry to hear of your niece's suffering. A very painful passing for everyone involved. My thoughts and prayers are with you all.
Take care,
Genko
I'm really sorry Season! :(
Dear Season
I am so very sorry to hear of your niece's condition, My thought are with you and your family during this very difficult time.
Cheryl
I'm so sorry for you and your family. This is the hardest time of all!
I am so sorry. I'm in tears for her poor children :'( Many prayers for your family during this difficult time.
Oh Season, my heart breaks hearing this. I am so very sorry.....
You will be in my thoughts ...
(I really HATE these diseases! >:( )
Season, my heart is broken for you and your family. Thank you for sharing with us, and for giving us the opportunity to pray with and for you.
Holding you in the light.
A66ey
My prayers are with you and your family.
I am so sorry. My heart goes out to you and your family!
I'm sorry, Season.. I'll be praying for you and your family..
My thoughts and prayers are with you, Season. Your niece would want you to take care of yourself through this. Don't forget to eat, rest, etc.
Cheryl
My thoughts and prayers are with you!
I am so very sorry for you, your niece and her family. It must be doubly hard to hear she did not have the care she should have gotten. My first cousin died from lupus at the age of 23. We were the same age, only a month apart. It is so very tragic.
Sending you a big hug.
Anna
I am so sorry to hear that she is dying in such a stressful state.
I have been told that Lupus is no longer a 5 year diagnosis to death sentence. Those that live the longest are those that take sovereignty over their health and life. I know gals that have died in the five years under doctor care, and those that have lived longer with alternative care.
My thoughts are with you, your niece and your family. xxxxxxx
Season,
I am so very sorry. It is heartbreaking to hear what you, your family and her dear children are facing..
My thoughts and prayers for you and your family..
I am so very sorry. :( :( Please hug her kids for me :( :(
Season,
Oh how I was so very sorry to learn the news that lupus is going to take your dear neice's precious life from herself, her children and her loved ones.
I have sat where you are, except in my case it was my 1st cousin who had the lupus flare.
I cannot bring you comfort but in an effort to help, will say that at that time, as my cousin slipped into permanent unconsciousness, I tried to stay connected with her by physically touching her. Touch and hearing are the two senses a person retains longest. Even when they cannot speak, they can be spoken to with a sound or a caress. If it is permissible, I would encourage the children to do that.
I'm certain a caring person such as yourself already knows that one of the most thoughtful ways to reach out to a dying person is by not saying or doing anything. By just being there you communicate "I will not desert you." By sitting or reading a story with the children quietly in the same room with them, you communicate love and dedication. By staying beside them when they need you but can no longer respond, your message is clear: "I am right here beside you and I will always care."
With much compassion,
Daisy
Dear season,
I'm so sorry to hear of your dear neice's fight with Lupus has come to this. Dear Daisy has some wonderful advice and words that I can never express so well.
Please know that we are all with you in thought and spirit; my prayers are with you and your family.
Melinda
Please know that I am thinking of you, your niece, and her family.
I'm so sorry.
(((Season))) - I am so sorry to hear this news about your precious niece.
I know your heart is breaking right now as you see how your nieces appearance has changed because of this lupus flare, and how her body is reacting. I was so hoping her new doctor could have found something that would work for your niece to turn this all around.
It makes me sad that your niece didn't get the medical treatment she has needed these past two years.
I too think that the hearing is one of the last senses that leaves a person when they are dying. When my mother was unresponsive and I sat next to her bed, I told her the doctors had done everything they knew how to help her and that she was a hospice patient - her eyebrows went up as if to say "what?!". I knew she heard me.
Keep talking to your niece - tell her you love her and she's not alone.
It's hard for any children - young or old - to lose their mother. I'm so sorry.
Keeping you, your niece, her family and all your family in my prayers.
Hugs,
Bucky
This breaks my heart. I'm praying!
Dear Season, my eyes filled with tears as I read your post. I am so very sorry for the heartache you all are going through and will remember your family in my prayers.
Dear Season
I am so sorry for what you and her children are going through. >:(
Tell her you will always watch over her children, I know that would be the greatest gift anyone could give me at that time, but I imagine you already have.
Keeping all of you in my prayers.
I am so very sorry for your entire family, Season. Prayers for you all, especially the children in the difficult days (and years) ahead, may they find comfort and peace.
You and your family have my deepest sympathy.
Thanks so much everyone for your kindness. I feel the love and concern you all have from your caring words. This is so hard to face.
I wanted to connect with her in some way today, so I chatted about all the things that she loved and I sang to her. I remember the little girl that she was several years ago. I don't think I ever saw her sad-----she greeted everyone with a bright happy face. As she got older, she was full of compassion for everyone.
Now, her parents are asking all the "why's". But there is no answer.
So terribly sad.
Dear Season,
I am so sorry to hear about this very sad situation. Disease & Death are such intruders into our lives. It is difficult to understand. And even more difficult to handle the pain of it all. My thoughts and prayers are with you all during this heart-wrenching time.
This is such sad news. I am so sorry to hear this. Everyone is in my prayers.
susanep
Prayers for you and your family!!
How old is your beloved niece?
Season, you and your whole family have my sympathy for your niece's bad sickness. Not fair at all. Lucy
season, You, your niece and family are all dealing with so very much right now. I am so sorry that this illness has turned so lethal and is causing so much grief.
I'm praying for y'all, and I hope that a blanket of comfort will help everyone through this difficult time.