[katiebear]

Jack,

I’m very sorry for your loss. I will be thinking and praying for you during this difficult time.

Katie

[katiebear]

My dad passed away yesterday morning in his own bed surronded by my sister, myself, my aunt and his lady friend. He went very peacefully with dignity exactly where he wanted to be. As hard as this is, it is also a blessing. He spent over 170 days in the hospital this past year fighting for his life. Now he is at peace and he is with my mom. It is comforting to know that they are together. Thank you to all of you. You are wonderful people. Your prayers and support meant the world to me. You are angels that have helped me through this extremely hard time. I will never forget any of you.

[katiebear]

My dad is finally home. He got home yesterday afternoon. Both my sisters and I and my dad’s lady friend met with the social worker and the hospice nurse. They seem like wonderful people. I can’t tell you how good it made me feel that he is home. I just wanted to tell everybody how much I appreciate your prayers and kind words. They really are a lifeline at this point.

[katiebear]

I just want everybody to know that your posts mean the world to me. Everybody here is so wonderful. Finally after a long weekend of waiting, the doctor came in yesterday and said there is nothing more they can do. I couldn’t believe the difference in my dad’s appearance in only a few short days. Every bit of his hair fell out, which we should be used to by now I guess. The leukemia has now infiltrated his skin and he has angry red lumps in many places. They are actually growing bigger everyday. You can hear him wheezing across the room. The fluid problem has gotten worse. Lasix doesn’t really do it anymore. His abdomen is very enlarged. Something is also going on with his gall bladder and he had a sonogram yesterday, which as he put it is like beating a dead horse, because what would they do about it anyway? They are going to send him home to hospice as soon as it is all arranged. Hopefully very soon, as he is afraid he won’t make it home. He said yesterday that he doesn’t care if he’s only home for three hours and then passes, he just wants to be home. The lady that coordinates the hospice came in yesterday and talked to us. She answered my questions. They are sending him home with antibiotics and antifungals and the chemo pill hydrea that will hopefully lower his WBC which is thru the roof again, and perhaps alleviate some of his symptoms. The doctor said it won’t do anything for the blasts, but it might for the WBC. I didn’t think that hospice would administer the chemo pill, but they will. They won’t give blood though.

I guess that’s it for now. Thanks again for all the thoughts, prayers, and support. It is REALLY appreciated.

Katie

[katiebear]

All of you guys are so wonderful, I’m crying as I read your posts. You are so right Lynette, it seems as though you can physically feel your heart sinking. The ups and downs of this disease are just so hard to take. My dad called last night. He has become quite chummy with Liz, who is a physician’s assistant. She told him that the blasts are up to 80%. He told me he wants to come home. Hopefully we will make arrangements asap after we talk to the doctor this morning. It’s weird how sometimes he seems so confused and forgetful and other times he is perfectly clear on what he wants. I guess that’s it for now. I will update as I get news. I can’t thank you guys enough for your support and prayers.

Kate

[katiebear]

Hi Nicole,

I call my dad every morning and he gives me his blood counts and we usually discuss them and he keeps them on a chart so he can track them everyday. He has not done this in the last three days. He has no interest. The CT showed more progression of the pneumonia. According to the doctor, the effects of the DLI will not show up short term. No news on the cultures they took for his diarhea. He needed lasix for fluid around his lungs which makes me very nervous. He is having trouble breathing. He has used oxygen, but not continuosly. Some sort of bug is going around the hospital, so he can’t leave his room. I am worried about that also because he is not able to walk right now, and I know that helps the pneumonia. He is starting to forget things the last couple of days too, which is not like him. The physician’s assistant, who he really likes alot was very frank with him the other day. She told him if the DLI does not work, it will be a matter of weeks. He has been in the hospital since December 7th. He is afraid he won’t get to come home.

Thank you for your prayers, Nicole. You are an angel. I will keep you updated. I will be spending the whole weekend at the hospital.

Katie

[katiebear]

Hi Nicole,

Sorry I haven’t updated. My dad finished his chemo last Monday, and got the DLI on the following Thursday. I know that after the chemo there are still blasts in his marrow. I don’t know how many, he has not asked. He is still battling fungal pneumonia, and had a CT last night to see how that’s doing. His head is also congested. He has had some very bad diahrea, and I know cultures were done on that, but no results yet. He’s getting breathing treatments every 6 hours. He had a bleed in his eye on Saturday. His counts are still rock bottom. He is very worried because his insurance only covers 60 consecutive days in the hospital. I think he is feeling very discouraged at this point. He feels as though he is not going to come home.

Jen,

My dad is on the 12th floor. I love that floor. I haven’t met an Ashleigh yet, but I am keeping my eye out for her. I have to say I have yet to meet a nurse on that floor that I do not like. I am holding up okay, just tired. The hospital is far from home, and the trip is tiring. Thinking about this and waiting for something to happen is also tiring as I’m sure you understand. It’s very hard to focus on anything else. You are very kind to ask about me.

I guess that’s it for now. I will update as soon as I know something. Thank you everybody for your kindness.

Katie

[katiebear]

Hi Nicole,

Thanks for the prayers, they are needed. I don’t know why the doctor paired those drugs together. I know my dad already had both when he had MEC. The doctor also discussed Mylotarg with us and decided against that as it’s very toxic to the liver. As of yesterday though his WBC went down to 15, so we finally got some good news. I just pray that he will be able to get the DLI and it will give him a chance. Thank you for your prayers and kindness.

Katie

[katiebear]

Hi Nicole,

I hope this new year finds you well. It’s been a rough week. My dad started the Ara-C on Monday night. Today they are going to add in Etoposide. Hopefully that will do the trick. The pneumonia is at least stable at this point. So far my dad’s counts still continue to go up. Yesterday his neutrophils were .07 which is good for the pneumonia. His WBC is up to 33 which is obviously a problem. Hopefully we will see some kind of drop in his counts at some point. The doctor did tell us flat out that this is a long shot. We remain hopeful anyway. With the exception of my sister and I, our whole support system is sick so we have been taking turns every day to make sure he’s not alone. It’s hard as we are 70 miles away. Thank you for your kindness.

Katie

[katiebear]

The chemo didn’t work, and it turns out that there are so many blasts in his blood that they didn’t need to do a BMB. The plan now is ARA-C for 7 days and then a BMB and the DLI on the 10th of January. I hope this works, I think he is running out of options. Thanks for listening.

[katiebear]

Hi again,

Just a quick update on my dad. He had a CT on Monday to check on his fungal pneumonia. It didn’t get any worse, and it didn’t get any better. They changed his antifungal to Micafungin. Hopefully that will do something. He is getting a BMB today to see how the chemo worked. His counts all continue to rise except the neutrophils. Yesterday they were at .03. His counts never went down with the chemo, so I can’t imagine what the rising of them means. I’m going to think positive.

[katiebear]

Hi Jack,

How is your wife doing? I follow all of your posts also. You and your wife remain in my prayers. Thank you for the correction. I don’t know what I was thinking. It’s not that his counts are having a hard time coming back, they haven’t even gone down. I can’t imagine what that means. It’s hard to wait and not speculate as I’m sure you know. Happy Holidays to you and your wife.

Take care,
Katie

[katiebear]

Hi Nicole,

I went to see my dad on Wed. He looks pretty good. He is coughing, but has no fever. They have him on Voriconazole. He is seeing yellow most of the time, as that is a side effect of the antibiotic. They are doing another CT on Monday to see how he is coming along. He is also getting a BMB on Wed to see how the chemo is working. His counts have not responded at all to the chemo. I know until they look at his marrow they really can’t tell if it worked or not, it’s just odd to me that his counts haven’t budged. Makes me nervous. If this chemo didn’t work the doctor said yesterday that she is looking for another drug because they need his blasts down in order to give him the DLI. That’s all I know for now. I am going to spend Christmas with him in the hospital as one of my sisters is cooking, and the other has little kids. At least none of us will be alone. Thank you for asking, and I will keep you updated as I get news. Happy Holidays to you and your family.

Katie

[katiebear]

No Jen, you didn’t scare me. I appreciate your advice. My dad though does not want a second opinion, and is very happy where he is. He is very much still making his own decisions, and I do not want to step on his toes. I don’t think a second opinion would hurt, I feel stuck. I just got off the phone with him now, and the plan was to do another round of chemo after the new year, and then give him the DLI treatment. I’m not sure what is going to happen now, as he has developed fungal pneumonia in both lungs. Please continue to pray for him, and thanks again for your advice. I am going to see him tomorrow and will keep you posted.

[katiebear]

I’m so sorry, Linda. My thoughts and prayers are with you and your family.

Katie

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