ShanN

Crying. Just crying...

Awwwww, ((((((hugs)))))) Harry. I do hope and pray whenever you get away that you find some peace and alone time to reflect on wherever your heart takes you. Anniversaries are difficult. I hope your dear Jane will be right there with you atop of that mountain. Stay safe.

Hi "Bill's Mary", Thank you for thinking of me while waiting for your appointment. I pray things are ok. I can't believe I posted all those photos of my Leo. It's like I have to keep him alive. I have to share him. I have to keep looking at his precious face to try to accept what is. But I'm not accepting. I know he's gone. But it's so hard to grasp. I look at photos and how can it be that that smile is gone, that goofiness is gone, that love is gone, his hug, his kiss, his "I love you this big" gone... Never to be here with me for the next 40 yrs of my life... Should I live another 40. My last words three months ago, even though he was gone already essentially, were "I love you this big, always always". I'm very overwhelmed today. I'm overtired. I'm in a great deal of pain from Pleuritis.

Thank you Anne And thank you Karen. Karen, yes... NEGU... Never ever give up. I have that sign hanging in my room. Hugs to you.

Some of my favorite pics of my love... Sorry for so many. I just can't believe he's gone. I can't believe I won't ever see his face again, cuddle him, kiss him, go to the water with him... Our favorite pastime. I miss my Boo...

Tonight will be three months since my Leo bear slipped away. I'm remembering things more clearly the last couple days. I didn't want that decision to be made. I didn't believe he was totally gone. What if we held on longer? Maybe his brain just needed time to heal. Maybe, just maybe. I know I know... I will kill myself with endless maybes and what ifs. I wasn't with him all the time I should have been because I was sick. Maybe he felt I gave up on him. Maybe. No maybes... It is what it is... And it hurts. I feel so numb. But I feel so hurt. This song means the world to me. Because Leo always said "I love you this big". Guess what my Boo... I love you this big forever and ever...

Hi Fae I have missed your *twinkles* I'm going down for a nap hopefully without getting interrupted by needle pokes, temp taking, bp checking.

I love you Mary. To the moon stars and beyond. I wish I had the courage nd strength that you have. I just love you.

I love you my Sis, Mary. Thank u for all u have done for me. Thank u for all you did for my Boo... Your brother. I'm sorry you lost him. I'm glad you are here. Anne, I love that video... So much.

Thank you my friends. I'm two days away from getting to go home. The staff is setting up a visiting nurse for me three times daily. Mary will be staying with me. I m very worried. Worried isn't the word. I'm having hard time finding the right words for much. And hard time typing. Very slow. Going to be having OT and PT at home. But my Leo wont be home. I don't even know how I feel. But my heart is in my throat an I feel like I'm in someone else dream. I ant seem to make much sense the last couple days about anything. Getting very flustered.

Hi I am doing better. I remember so little of the past weeks. And that is bugging me I'm in a different room, less isolation. I'm feeling stronger. Eating little. Drinking a lot. No more IV. It's still in but no fluids. Taking meds orally now. Going poop on my own! I never thought I would be so thrilled to just go poop! Lol! I'm getting fuzzy hair back. I'm still in pain. But it's normal right now My Leo is gone. Three months this week. It is still not really registering g with me. I am remembering more of his death. Mary and I keep talking about it. I keep asking her things. Did I mention how much I love u all? I know how much u have prayed for me. How can I ever repay that? Going to post this now. I need to get a nap. I changed my profil picture to one from last summer when Leo was in a rehabilitation after seizure activity that left him not able to stand or walk for a while. I never liked him without his goatee and he never liked him with it because it showed white and he felt older. I loved it he looked sexy and sophisticated. I miss my boo

Dear Anne, Yes, I did say that what Mary quoted above. I love u. I'm so sorry your struggling.

Hi Anne, Thank you for your prayers. I just registered here so I can post on my own. I guess I have to wait for confirmation though. I am doing as well as can be expected. Losing Leo has been very difficult for me. We lost his twin back in June '04 to the same health issues. It certainly runs in our family. I've got my own concerns as well. And our baby sister in MD does as well. Thank you for asking. Having lost "Ziggy" (Samuel) and now Leo, is heartbreaking, however I've got to remain strong for Shan now. It is honoring my brother. It is what he wants because he can not be here with her and for her. I am going to read and get some rest. Blessings to you. Mary

Hello everyone... An Update On Shan, Unfortunately she has developed a pneumonia infection. It came on suddenly. Drs caught it early though. She's on more iv antibiotics. Fluids. She is sleeping about 90% of the day and night. Not a good sign, but hopefully it will be healing for her. She is not eating. She is obviously very weak. The drs say this is all "in normal range" for the 30 to 60 days post-transplant. Her numbers really have not changed much. So she still needs a lot of prayers that she does not develop GVHD (graft verses host) where her body simply rejects her brother's stem cells and the healthy cells attack her system. She is already ahead of the game though because she received stem cells from her sibling and not a stranger. Please keep her in prayers and thoughts for the infection she has and for her body accepting the process. She received blood today... a third time since the transplant. I am hoping she sleeps through tomorrow, not only for her healing, but also that she does not have to remember it is two months since losing Leo. She is so out of it that I do not think she will even remember if she wakes. I am still staying at her apartment so someone is here and paying bills etc... And my husband stays here with me about half the week. It is comforting for me just to be here because it is where my dear big brother lived with Shan. I am going to create my own account here if I can figure out how Have a blessed evening. And I will keep you updated. Mary (SIL)

HI EVERYONE. SHAN TYPED THIS MESSAGE FOR ALL OF YOU A COUPLE HRS AGO BUT WITH LOUSY INTERNET WAS UNABLE TO SEND IT, SO I AM SENDING FOR HER. -Mary (SIL) Hi. I've missed you all! Dr allowed me my iPad (de-germed of course!) in isolation to write to you all. Though I'm not getting enough Internet signal here in this part of the hospital so Mary will send this later. I had my brother's bone marrow cells infused to me last Thursday. God bless him. I've not seen him only once because he has my two nephews with him and they are both sick so no carrying germs to me. I had a few days with severe mouth sores but they are starting to let up. I've had two blood transfusions since the 18th. I'm on yucky antibiotics... But in IV form so they aren't making me too sick. Having a good amount of nausea but getting Zofran regularly. And a lot of bad pain but the morphine drip is helping some and helping me sleep four hours or so at a time. I'm praying and praying the healthy stem cells start taking up a healthy home in my system and growing from there to recovery. But I'm told it will be several weeks more before we know. I am out of it a lot. I guess a blessing. But I hate this hospital and isolation and pain etc... And I have dreams of my Leo bear vividly being here but then wake and he is not. I miss him more than I think even I know right now because I'm so medicated. Sometimes I just wish I would not make this battle so I could be with him. But that's not my decision to make. I'm sad. And I'm really kind of numb still. It will be two months next week. Still can't wrap myself around it. Thank you my dears for all of your thoughts prayers and well wishes. Mary has read most everything to me. I just wanted to write something while I had a little energy. I'm wiped out and need to go back to sleep. Love and hugs. XO Shannon

Update on Shan: We are coming into the fourth day post bone marrow transplant. Shan is not doing well. However, these things are to be expected right now. Pain, tiredness, mouth sores, nausea and lowered platelet count. She received blood today to up her counts. And she is receiving antibiotic treatment as well because she is so susceptible to infection. She is on pain medication and therefore sleeping a lot. Hopefully in the next few weeks there will be evidence the positive engraftment has taken place. This is our prayer. Mary (SIL)

Bless you all for your kindness. Shannon will be getting her brother's bone marrow tomorrow morning. I visited with her this evening all suited up in yellow suit and mask. We actually laughed our butts off at how ridiculous I looked. Will keep you all informed on progress. Goodnight. Mary

Hi all, Shannon is done with chemo. She's had some very serious effects but she has a few days to recover. They will be doing the stem cell transplant in a few days. Then we wait. And pray. Hubby and I are off to bed as it is passed 1am here. God Bless.

Shannon had several seizures Monday. She had several scans and it shows a tumor in her brain. She is receiving high dose chemo in her port, but also into her cerebrospinal fluid to shrink the tumor in the brain. All the medication is taking a huge toll with nausea, fatigue, a lot of pain, and today a fever. No one is visiting her because of the very dangerous threat of any germ causing infection. That can be detrimental. Chemo will be over Monday. We'll all praying she gets through this and then receives Mark's stem cells shortly thereafter . It's a day to day process. Radiation will end next week as well. Thank you all for your continued messages. SIL Mary

No marrow yet. Still several chemo and radiation treatments. She is holding up ok. Being in the hospital she is getting better anti sick meds, and they do tests several times a day to keep up with her counts. I think she honestly does not want to be home even if she could be, because she seems to be going through some denial and shock over Leo's passing. Day by day.

Hi everyone. This is Mary again updating on Shan. She starts her high dose chemotherapy and radiation later this morning. So there is no turning back. She will receive her brother's healthy donation of stem cells. She is missing my brother very very much the last couple days. Blessings to you all. Mary

Hello, Mary (mfh), the oncologist is very hopeful in this process. Mark (shan's brother) is as close a match as you can possibly get. That is wonderful wonderful news. So it's up to her body to take what will be given. And yes. She has a special blanket that was Leo's. I think that is her comfort right now. Thank you all for the thoughts etc... I told her that you all have her in your prayers. She still is sleeping a lot. She did start some solid food for dinner. But her appetite is slim. Bless you all for caring! Hubby and I are staying at her place and going through some bills, legal stuff, and more. It's good to have someone here. Our son and two boys are at our house. So this alone time is welcome. Will keep you abreast when able.

Thank you all. Shan is recovering from the surgery. Healing is slower but that is to be expected because of her immune system. Dr is hoping to remove the drainage tube in a couple of days. She is getting nutrients and fluids still. But also began some fluid diet today. Jello, broth, ginger ale, boost(which she hates!). She will start high dose chemo and radiation probably by the end of the week at the earliest. Then she will receive her brother's healthy stem cells a few weeks later. He is donating this week. And by the grace of God or some higher power, her body will accept it rather than reject. She will receive medication to prevent rejection. She will be in isolation during this whole process. Obviously any infection is life threatening. She is sleeping a lot. I guess a blessing really. She does not talk much about Leo. I think it is just too much. She does not have the strength. God bless you all in your journeys. I will update when able. Mary (sorry had to edit so you'd know it is myself updating)

Shannon had surgery on Thursday to remove part of her liver that had a mass, her spleen entirely, as well as a mass in her chest. She is in a lot of pain. Getting nutrients and fluids in her central line. And has a tube that is draining fluids from her chest and abdomen which will speed up healing. This is stage 4 lymphoma. Her older brother arrived from CA. He will be donating bone marrow that will save her life if our prayers are answered. When Shan recovers from the surgery, she will begin radiation and very high dose chemo that will unfortunately kill good cells along with bad. But getting her brother's healthy matching marrow will be the greatest gift. It is past 3am here. Unfortunately, her brother, SIL, and nephews are on west coast time. And the baby is up teething. He just took off walking last week, so he is precious. Will update as things progress. Today is one month since Leo passed away. I know how much Shannon doesn't want to fight this battle. I lost another brother... But I didn't lose my husband. --Mary (SIL)

Anne has been in my prayers. Please pass my love on to her. I won't be on here but please know my heart is with hers. I posted in a new thread regarding why I won't be here.