My Dad

[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

[jaxem]

katie
i’ve been following your plight with your dad & am sorry he’s going through this ordeal. after going through countless treatments, my wife has a rough time with her counts coming back up too. voriconizole or VFend isn’t an antibiotic but is an anti-fungal med. have a great holiday.

[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 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]

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.

[riley]

Hi Katie,

I’m sorry for the delay in getting back to you. I wasn’t able to log in over the holidays. Thanks for continuing to post updates. My father was on Voriconazole at one point, and he had that same side effect of seeing everything in yellow. I hope the Micafungin will work better for your dad. My father also had ARA-C (Cytarabine) in his first round of chemo. They paired it with Daunorubicin for him, and it was a very powerful combination. Please keep us posted on how your father does with it. I’ll keep the prayers coming.

Nicole

[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

[riley]

Hi Katie,

I’m sorry it’s been a rough week. I’m praying for all of you.

It’s interesting that they’ve decided to pair Etoposide with Ara-C. My father had both those chemos also, though not together. At the time, we were told they were among the strongest leukemia chemos that existed. I hope they will work well for your father.

Can the doctors tell whether the elevated WBC is due to MDS/leukemia or the infection?

Please continue to keep us posted on how you and your dad are doing, as you’re able to.

Nicole

[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

[riley]

Hi Katie,

That’s great news about your father’s white count coming down, whether it’s due to the infection starting to clear or the chemo kicking in. I can only imagine that you must be walking a tightrope of wanting to stay hopeful but trying not to get your hopes up too much. I hope you’re finding yourself able to live in the moment, so that today you and your dad can celebrate his good news. My prayers for both of you continue.

Nicole

[poppyshope]

Hi Katie,
I haven’t logged on in a while, but am praying for you and your dad. I actually went on to see just how YOU were doing- i have been thinking of you and how you are probably on the 12th floor- around the corner from the dunkin donuts i used to get my dad baskin robbin chocolate shakes from. I was wondering if you are there – there is a nurse named Ashleigh and she is wonderful she used to tell me everything and she was right – i found the nurses there were so on top of it! They used to say this is what is going to happen and what to expect so that I wouldn’t worry- they actually told me to take my dad home and enjoy him they were so right. Anyway, I am so glad you got some good news your poor dad deserves it and sometimes that is just what you need to get over the hump- it is hard to be in the hospital and not at home were you are comfortable. Take Care and Keep Praying – Jen

[riley]

Hi Katie,

Just checking in on you and your father. How is he doing? Are they planning to go ahead with the DLI? I’m thinking about you and hoping that you’re doing all right.

Nicole

[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

[riley]

Katie,

I’m sorry that your father is facing battles on so many fronts. Do you have any updates on his counts or any of the pending tests?

How long has he been in the hospital at this point? How long would he have to be out of the hospital before he could go back?

I’m praying, Katie. I’m here if you want to talk.

Nicole

[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

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