Mary1063 Posted September 2, 2013 Report Share Posted September 2, 2013 I have been awake for almost three days now... Zero sleep. I'm agonizing in fear for Shannon. I had a bad feeling when she became so sick again and drs said they were repeating scans. This is the worst possible news we could have received. Two things are happening. One, GVHD is gripping her immune system. And second, there are cancer cells active in her blood still. She has a mass in her chest compressing her lung. But she also has pneumonia and fluid around her heart, due to the GVHD... Her brothers healthy stem cells are attacking her system. She is back in isolation. There is cancer still active. She cannot receive chemo... Her system is too fragile from the transplant and the rejection. She is receiving booster red blood cells, white blood cells, and platelets. And more anti rejection medication and antibiotics. All in the hopes by some miracle her body accepts this process of her brothers stem cells and to make her stronger so maybe she can get more chemo. She is once again heavily sedated so there is a better chance all the meds will do their job. But this is it. THIS IS IT... She can not go through another transplant. MAYBE she will get well enough for more chemo and radiation treatment. MAYBE. I told the dr to not sugar coat things. So he didn't. He also said that losing Leo and her grief... Acknowledge or not... Is most likely playing a big part subconsciously in her wanting to get better. I'm kind of dumbfounded and broken and terrified right now. It's 4am and here I am awake just praying. Link to comment Share on other sites More sharing options...
enna Posted September 2, 2013 Report Share Posted September 2, 2013 I cannot imagine how agonizing this is for you, dear Mary. Please know that I hold you in my heart and pray for Shannon. We are all hoping that Shannon will have the strength to pull through this. Her mind and body have gone through so much. I learned when my Jim was so ill to turn my prayer to my God and ask Him, "Not my will, but Yours." We here on this forum want only the best for your dear Shannon. Sometimes this healing is not in our hands or the doctors. The hardest thing in my whole world was for me to let my Jim know that it was okay for him to go and that I would be all right. I felt that was a part of my love for the man I spent forty years of my life with and today I carry Jim in my heart and I am okay. My prayers continue for Shannon, dear Mary, and here is a virtual hug from me to you. Now sleep. Anne Link to comment Share on other sites More sharing options...
Mary1063 Posted September 2, 2013 Author Report Share Posted September 2, 2013 Anne, hi Hun. I am praying non stop for Shan. She is only 40. I don't want her to give up. I'm afraid losing Leo has got to be a huge factor in all of this for her. I have held her hand and I have told her it is not ok to give up. I have told her that Leo would absolutely 100% not want her to give up. I'd give anything and everything for by brother to still be here, because I know he could make Shannon fight. I feel completely helpless. It's 6:40am here and I dozed a few minutes is all. It is not storming bad here. Link to comment Share on other sites More sharing options...
enna Posted September 2, 2013 Report Share Posted September 2, 2013 And that is just what you should continue to do - all will work out as it will. You are so brave. All of our situations are unique. I believe that Shannon is fighting with all her might and I believe that all the prayers being sent her way will continue to give her what she needs. I am sorry that you are feeling helpless - it is so understandable, dear Mary. We want to fix things that we do not have any control of and that is so hard for us. You need to rest. I'll check back later. It is good for you to write your thoughts down. There is a healing in journaling. Anne Link to comment Share on other sites More sharing options...
MartyT Posted September 2, 2013 Report Share Posted September 2, 2013 Mary, dear, I can only add my voice to what our dear Anne has said to you already. We are holding both you and Shannon in our hearts and in our prayers . . . ♥ Link to comment Share on other sites More sharing options...
feralfae Posted September 2, 2013 Report Share Posted September 2, 2013 Dear Mary, I am so sorry Shannon is not doing better, and that you are going through this time with her. I know it is terribly hard on you, on your heart. Please keep sharing here. We are all holding you in prayer and in our hearts. When Doug was so ill, and could not have more chemo and no more surgeries would help, he was very stubborn and kept holding on. One day, though , after he had met with all the doctors, he held me close and told me that he would be leaving in a few weeks, and until then, he just wanted to be at home with me. I had to let him know right then that no matter what, he could go when he needed, and that I would be all right, no matter what. Anne, your message just reminded me of that time, which I had pretty much blocked after he left. Shannon has been through so much. I am sure that Leo leaving has given her one less reason to stay, to fight. She may have plans to join him, and she did say she had been talking to Leo and he wanted her to join him. I wish we had more understanding about this part of life so these times were not so hurtful for us. I wish we knew more about how Shannon is feeling, and what she wants. She has been through so very much. Today, I will pray for the best for everyone, that G*d's will be done, and that even if we do not understand right now, we will come to understand whatever happens later, knowing that it is all going to work out for the best. I will pray to keep our hearts open to the Grace that is all around us, even if we sometimes feel so very abandoned. Dear Mary, I hope you can find time to care for yourself, sleep, eat, and share love with Shannon. All that really matters is the love. *<twinkles>* fae Link to comment Share on other sites More sharing options...
kayc Posted September 2, 2013 Report Share Posted September 2, 2013 I know Shannon has the strength to fight this...look what she has already been through in her life! What we don't know and can't control is her desire to fight it. That lays with her alone. I know I couldn't blame her if she wanted to just rest and go home to be with Leo, but of course I know that isn't what you want for her! My prayers are that she will know inside herself what is best for her and that you will be granted peace to go through whatever lies ahead. You don't want to lose yet another family member, and so young at that, truly, I understand. I see a msg. coming from fae, and she says she'll pray for the best for everyone, that G*d's will be done, and that even if we do not understand right now, we will come to understand whatever happens later, knowing that it is all going to work out for the best. That seems the safest way to pray as sometimes we just don't know how to pray. My arms want to surround you at this time and I hope you can get some sleep today. Please convey our love and care to Shannon when you see her. And to you too. Kay Link to comment Share on other sites More sharing options...
Mary1063 Posted September 3, 2013 Author Report Share Posted September 3, 2013 O my heart. I am the "tough strong" one in this family. And I am literally falling apart unraveling so quickly. Honestly I'm just utterly terrified. Terrified of Shannon's grief over losing my brother and quite frankly terrified of MY OWN grief over losing him. I cannot fall apart now. I've got to keep it together. I know my dear SIL so very well, that I know in my heart if Leo did not pass in May then she would be so so so much better in this fight against this cancer. Can I say something? I HATE CANCER!!!!!!! I HATE DIABETES and all that it did to BOTH of my brothers which stole them from me and us WAY TOO SOON!!!!! Age 43 and 52. I am ANGRY!!!!!! I guess it is easier for me to be angry than sad. However, right now I am both. Thank you all for your constant unending circle of support for Shannon and our family. Link to comment Share on other sites More sharing options...
enna Posted September 3, 2013 Report Share Posted September 3, 2013 Yes, Mary, you can say that you "HATE CANCER!!!!!" And that you "HATE DIABETES!!!" You can even be very ANGRY!!! I am so sorry that this is such a painful time for you. Your brothers were too young. Shannon is too young to be going through all she is going through. You have a right to be both angry and sad. You have gone through so much. I hope that you have gotten some sleep. I wish I could take all this pain away from you. We are here for you, your family, and our Shannon. Prayers are continuing for all. Anne Link to comment Share on other sites More sharing options...
Mary1063 Posted September 3, 2013 Author Report Share Posted September 3, 2013 Thanks Anne, I slept about an hour and a half. I am calling my Dr in the morning to see about something more for my nerves. I'm on klonopin, lexapro, and abilify regularly but I honestly need something more right now... At least at night. Link to comment Share on other sites More sharing options...
kayc Posted September 4, 2013 Report Share Posted September 4, 2013 Mary, It's okay to be angry, esp. at the illnesses your loved ones have had to deal with. I feel angry to at the Diabetes and other medical challenges I've had to deal with and also at the way our health care industry is going...they seem to fault us for having poor health, not understanding that some of us do the best we can while others do not but luck out anyway. It's not fair! And it's not fair that these infirmities should rob us of quality of life and even more importantly, of those that we love. Keep us posted how you're doing, I hope you were able to get in touch with your doctor yesterday and were able to get something to help you rest. Link to comment Share on other sites More sharing options...
Mary1063 Posted September 5, 2013 Author Report Share Posted September 5, 2013 Shannon's counts are getting worse still. The pneumonia is not getting better. She HAS to get better and her blood counts MUST improve greatly if there is any hope of more treatment. And she is just getting more sick and more frail and she is rarely awake now. I was going to say a whole lot more but I just can't. I can't believe this is happening. I refuse to believe that she could lose this battle! On the other hand, the drs are doing everything they possibly can do yet she is losing. And I can't help but believe somewhere inside her, the most important part of her, she is giving up the fight and wanting to go be with Leo and her dear Mother and others. I've caught a cold from my grandsons. So I can't be at the hospital. But she is not awake anyway. Having a real hard time. Link to comment Share on other sites More sharing options...
enna Posted September 5, 2013 Report Share Posted September 5, 2013 I am so sorry to hear this latest news, Mary. I am with you and my prayers continue for Shannon and you and your family during this hard time. I hope you are feeling better with that cold of yours. No time is a good time for colds. Please know that we are all here holding you in our hearts as you go through this difficult time. I wish we could be there to give you the support you need right now. We are with you here at our fire. Anne Link to comment Share on other sites More sharing options...
Mary1063 Posted September 5, 2013 Author Report Share Posted September 5, 2013 Thank you Anne. Hugs I'm trying to read thing here. It's so difficult right now. It feels like my world is spinning with the loss of my brother in May and I am not really coming to terms with his loss yet, and maybe I should, and the thought of Shan losing this battle with cancer. It's overwhelming and mind numbing and gut wrenching all at once. Link to comment Share on other sites More sharing options...
kayc Posted September 5, 2013 Report Share Posted September 5, 2013 Mary, It has to feel overwhelming, how could it not, with so much going on and all that you've gone through already. BTW, how is your sprain/break doing? Link to comment Share on other sites More sharing options...
Mary1063 Posted September 5, 2013 Author Report Share Posted September 5, 2013 Hi Kay, hugs to you. My sprain is still painful but the healing process is slower due to my diabetes. It is getting there though. And Little Man is very in tune to what's going on with me. Social workers are looking into hospice for Shannon, per Drs orders, for down the road. They want us to "be prepared" even though we are still praying for a miracle. That's hard to swallow. Her big brother... Her only brother... Is sitting with her a lot right now. He is having a hard time because her body is rejecting his doner cells. So tired. Hoping to get a nap in soon. Link to comment Share on other sites More sharing options...
kayc Posted September 5, 2013 Report Share Posted September 5, 2013 This is incredibly hard. It's hard to accept "hospice" when you're still hoping she'll make it. I guess you have to hope until/unless the doctor tells you there isn't any. I'm glad you have Little Man and pray he is of great solace to you. Praying for all of you. Link to comment Share on other sites More sharing options...
MartyT Posted September 5, 2013 Report Share Posted September 5, 2013 Mary, dear, I hope and pray that, if the time comes, you will feel better about accepting hospice for Shannon. Hospice is there to support the family as well as the patient, and you are certainly deserving of such support. Our hopes and prayers are with you all ♥ Link to comment Share on other sites More sharing options...
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