Mary1063

Oh Anne, That video is beautiful. It's brought me to tears. It made me want to reach up to Heaven and hug both of my brothers and never let go. Yet it is calming at the same time. The last several days though, the simplest things seem to get the tears flowing. Thank you for sharing. xo

Leo and Ziggy were almost three years older than me. This is Leo in 2010 and myself that same summer. He looked so well then. People say we looked so much alike. These are the pics I have found that look most similar. I miss my big brother. We really didn't have many pics taken together sadly. I regret that very much.

Awe, thank you Marty. For your support.

Hi everyone, Shan was hoping to be coming home tomorrow if all was going in the right direction. However, things right now are still somewhat unpredictable. This morning she began running a temp of 101+ and had some loose stools, difficulty breathing, and complaining of pain in her back between her shoulder blades, more to the right side. She had a chest X-ray and there is no pneumonia, thank God. Her Dr says she has pleurisy; inflammation in the lining of her right lung from a viral infection. So she's back on the IV for now and getting breathing treatments four times daily. So coming home is postponed. The Dr knew there would be a possibility of a kink in the discharge plan but its just a slow process. Her blood counts are still improving. Yay for that.

Oh sis, I LOVE YOU more baby girl!!

Thursday will be three months since my big brother passed away. And last night I found myself crying... Really crying... For the first time. Maybe because I can breathe a little easier now that Shan is more out of the woods. I've always been a caretaker. I've always put everyone I love before myself. I did that for both of my big brothers when they were alive. And I'm doing it for Shan. I couldn't save my big brothers, just as I couldn't save our father. And all from the same long fought inherited chain of illnesses. Most of which I too possess, as well as our "baby" sister. I cried for a good couple of hours last night. My husband tried to console me, but either I just wouldn't allow it, or he was doing it wrong. I don't know really. All I know is that Leo was my big brother and I'm having much more of a hard time with his loss than when Ziggy, his twin bro, died nine yrs ago with the same issues. They were both my big brothers and meant the world to me. However, Leo's passing is hitting me harder.

Hi Anne, What can I say? Maybe I don't belong in this thread, because I have not lost a spouse. However, first I need to say BLESS YOUR HEART. Secondly, I don't believe for a second that you're self centered. Look at how you support others here. Look at how you have supported Shannon and myself and my brother when he was still here. I cannot pretend to know your loss of your husband. However, having a failing heart, and going to drs and learning other organs are not well either... Is exactly what both my dear brothers lived. You need to take care of you sweetheart. Just as Shannon has to take care of her even though Leo is gone. I'm sorry you lost your beloved Jim fifteen months ago today. ((((((Hugs)))))) I think he is with you wanting only the best for you. And the best is to take care of his beautiful Anne! Please go easy on yourself okay? I'm with Shannon and she has just told me to tell you she sends you love. She is in a normal room, semi isolated. But wants to post here to everyone. When she gets more up to it. But she says this "Anne, please keep fighting for YOU... And I will keep fighting for me. Because that is what Your Jim and My Leo would want." ((((((((Hugs)))))))) and love and peace as you remember Jim.

LOL... Anne, Yes I looked smashing indeed!

Thanks, Yes I was able to go in and sit with her. She has to wear a mask. And I wore a pretty yellow gown... LOL... And mask. She has been awake a lot today. And still no temp and she even ate real food! Well, soup anyway. Kay, I'm sorry, that must be so difficult for you to care for your Mom and have to tell her things that she doesn't recall. Shannon remembered Leo passed and some of the circumstances. Now she won't much talk about him. I'm sure that will all come in time. I suppose yes, her mind is trying to protect itself and her body right now. I've got to keep this foot up now. I did tell her that all of you are thinking of her and praying for her... I took your names with me and she knew you! So thank you so much from she and I.

Thank you all! And Marty, thank so much for sharing the link with me. I will definitely take a look. I have very good news! Shan has been fever free almost 24 hrs... Without Tylenol! She was very awake last night, though she thought it was April and she asked how and where Leo was. She thought he was in the hospital still. I had to be honest with her. I'm still confused about how badly her memory has been effected. The dr and her therapist are not surprised though. Her therapist said she will begin to recall the events of Leo's death. Her body AND mind both have been through so much and still has a huge fight to fight. Later this morning she is having some more tests. But if she improves more and more in the next few weeks and does not have infections and gains strength and there is significant growth of the healthy bone marrow... Then we can discuss her coming home. My heart is so happy for her. However, my heart breaks because she just doesn't recall Leo's last days.

Yes Kay I saw the dr Friday and he did an X-ray and it is only a sprain. Hurts like much though. And yes we will take any encouraging news about Shannon

Thanks everyone. Shan is still fighting high fevers, but not from infection. Her body is just reacting to her bone marrow trying to accept her brothers stem cells... Which is actually a good sign. It is slowly happening. She is also still in a lot of pain. But her blood counts have improved. It's still very much a wait and see game... In isolation... But things are very hopeful. Small feats right? I'm hobbling with this sprained foot. I've got my walker though. I'm very stubborn and don't like to use it, but it's an order.

Thanks for thinking of me. Kay, walking is out for me... I fell today and sprained my ankle badly. Little Man tripped me. He goes between my feet! So I'm in a lot of pain tonight. But of course Little Man is glued to me as he has been since we got him. I miss Leo because as my older brother, he would tease me about everything. He had such a wacky cheery sense of humor. I just miss my bro.

Good news and bad news... Shan is breathing on her own, off the ventilator, and has been awake for some short periods of time since yesterday. However, she is still spiking high fevers. And is in a lot of pain. She's on so many meds right now to help fight infection and to help fight the rejection process. Drs are hopeful engraftment will take place. She is in isolation... None of us can see her right now. But she is sleeping most hours. Bad news... I was walking Little Man and he tripped me and I fell and severely sprained my left foot. Little Man is glued to me! LOL! Going to rest.

And yes he's a cuddle buddy. Sleeps right up against me.

Thank you Anne His name is now "Little Man".

Yes, Mark is back here from CA. He left his wife and kids, I know it's hard to be so far away. I'm struggling with my sleep, my depression, and the stress is making my neurological issues a bit worse. And even my diabetes is being effected. But I'm not alone. However, I feel very alone with Leo being gone. I miss him tremendously.

Shan has not woken. She's running a pretty high temp of over 103 that they are trying to get down the last 12 hours. With little success. Unfortunately this is a sign of graft verses host, the stem cells are attacking her body. Her dose of prednisone was raised to try to combat it. I'm not giving up, but I'm certainly a mess. Pierre is not responding to the name given to him at the shelter so we changed it to Little Man... Because I was calling him that and he actually responded to that. Thank you for your continued thoughts.

Hi friends. It is 2:00 in the morning and I got a call a bit ago that Shannon woke but was just utterly disoriented. In turn she was fighting the breathing tube and somehow yanked out one of her IV's. She was sedated because they need to keep that breathing tube in for now. Apparently she really wasn't that awake, rather sort of in between consciousness. I don't know, I obviously was not there. On another note, I'm feeling terrible missing Leo so much. I know Shannon took such good care of him, but I did too. I was very much a caregiver for both he and Ziggy. I feel like a lost little puppy without my big brothers. Speaking of puppy... Here are a couple pics of Pierre from yesterday. Our grandsons love him. As do I. But he is for Shannon... But she has to get better.

Shan is still fighting a gravely ill battle. On top of no immune system and failure to accept healthy stem cells yet, she has been fighting pneumonia, been on several antibiotics, on a ventilator, and yesterday she went into cardiac arrest and they quickly determined that the cause was a pulmonary embolism. She is more stable in that respect, with medication on board to dissolve the clot. This occurring while already being on heparin since her high dose chemo. She is indeed in a coma. Has not woken in several days. It's tearing my heart out to see the multiple iv's, the tubes, the wires, the ventilator. If she is giving up... Because she knows if she survived that Leo won't ever be here again... Then I can't take that. Maybe I'm being selfish here, but I knew Shannon before my brother knew her. I loved her before he did. She was my sister before she was legally my SIL. So this is killing me. Her vitals are stable tonight. I guess for now, that's all we can ask for. Going to attempt to get some sleep... My husband rescued a three year old dog today because they were going to put him down for no reason! He is a terrier chiwawa mix. His name his Pierre. He's very sweet, shy, and gentle. If Shan pulls through... He will be hers'. Going to cuddle with my husband and Pierre.

Oh God bless her and you and your family Kay. It amazes me the immense struggles and pain so many suffer, including grief, and become miracles in the process. With my reading here, it is very clear that EVERYONE here, while all unique journeys, are true miracles. I have got to try to lay down and rest. Things are catching up to me.

Thank you both. Kayc, That truly is miraculous that your sister pulled through. I have been trying to read many posts here. Shan lost the love her life. I, myself, do not know that pain. I cry for all of you who have had to suffer losing the loves of your lives. I have to have faith that Shannon will pull through this. Because I want to help her cope with Leo's death. I need that too. Blessing, Mary

Shan is fighting a very tough battle with pneumonia and now a kidney infection. This is resulting in the engraftment process "stalling" because of these infections as well as needing more blood because of dangerously low platelet counts. She is on so many medications for the infections, for pain, for blood clots, and now to hopefully prevent Graft Verses Host Disease. She is critically ill. She is rarely awake. All I am thinking is that she is not wanting to fight because Leo is now gone. I can't pretend to understand what she must be feeling, even though she is very critically ill. The heart feels what the mind cannot grasp. I sat with her in ICU in an isolation room this morning. All suited up. Gloved. And masked. She did not wake. However, I spoke to her and expressed everyone's prayers and love. I told her to please keep fighting because she has so much left to do in this life. And Leo will forever be with her. Just as her Mother is still with her. Whether she heard me or believes it, I can only pray. Her brother will be flying back from CA on Friday. We are all very scared. I never thought this battle would be so difficult. Please please keep praying for a miracle. Thank you from our entire family.

I do feel responsible for Shannon, not only because Leo is no longer here, but because I feel a sense of incredible guilt with having my husband here and healthy and with me for 30 yrs and Shan had so little with my brother compared to Butch and I. I guess I am just having a culmonation of feelings going on about both my brothers and about Shan. Thank you for "permission" to let tears flow. I'm scared to do so. And I tend to take on the role of caretaker. I see a therapist on an as need basis. I have a call into her. Mary

Thank you all so much. Anne, bless you. Those last moments with our siblings or any loved one are so difficult. "Anna Banana", your secret is safe with me! I'm honestly having a tough time. I have neglected to cope with Ziggy's death all these years. And now Leo is gone and it is all becoming much more real and "in my face". I want to get Shan through this health crisis. I don't feel I can do that with my full attention without doing my best to put aside my own grief for both my brothers. If we were to lose Shan, I would feel completely responsible. I promised Leo, even though he could not hear me, that I would take care of her. She means just as much to me as my own siblings.