[riley]

Neil, I’m so glad to hear that your surgery went well. I hope that you’re home, healing and resting now. Please keep us posted about how you’re doing, as you’re able to.

Nicole

[riley]

Neil, thanks for letting us know. You’ll be in my prayers today and throughout your recovery. I’ll look forward to another post from you, when you feel up to it.

Take care,
Nicole

[riley]

Katie,

I am very sorry for your loss. My heart is heavy for you, and no words seem adequate. What a blessing that your father was home with his family surrounding him when he passed. You and your family will remain in my prayers. I hope the happy memories you have of your father will bring you peace.

Love,
Nicole

[riley]

Hi Katie,

I’m so glad to know that your father is home and you’re together. That must be bringing him a lot of peace. You fulfilled his wishes, just like you have every step of the way. This is such a sacred time. I hope you and your dad will get to say anything to each other that you might still need to and that you share as many hugs as you can. I’m thinking of you and praying for all of you.

Love,
Nicole

[riley]

Katie,

My prayer is for peace for your dad, you, and all in your family. There are so many here who care. You are not alone, and you and your dad are surrounded in prayer.

Love,
Nicole

[riley]

Hi Katie,

I’m sorry for all that you and your dad are going through. It’s good that you’ll be able to spend the whole weekend with him. I’m sure he appreciates that so much. When my father’s doctors told us that there was nothing more that they could do for my father, he said he wanted to come home and he wanted all of us to be with him. The hopsital medical staff helped us to put everything together for a quick discharge with hospice, so we were able to bring my father home within a few hours. They had arranged for him to have oxygen and pain meds at home, so he was comfortable. Our whole family was around him, just as he wanted. His passing seemed painless and it was very peaceful. I have no doubt that your father knows how much you love him. You’ve been there and have been a constant source of support and an excellent advocate for him. No one could have done anything better, Katie. I’m sure that your dad is proud of you and quite thankful for all you’ve done for him. Your father has bounced back from tough situations before. I’m praying for another miraculous rebound for him. And I’m praying for peace and strength for you.

Nicole

[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

[riley]

The Leukemia & Lymphoma Society offers financial support. They have a national financial aid program and a state/local financial aid program, and you can take part in both. I was told by a L&LS medical social worker that this applies for MDS patients as well. I don’t think the dollar amount that they’ll cover is large, but every little bit helps.

Here’s a link that may be a starting point for you: http://www.leukemia-lymphoma.org/all_page?item_id=4599

I’d suggest looking up your state/local chapter and contacting them as well.

Also, if your husband has been seen in a hospital (or a large oncology practice), they should have medical social workers on staff who can help you find other sources of financial support.

Please keep us posted on what you look into and what answers you’re given so we can try to keep brainstorming with you.

Nicole

[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

[riley]

My father had repeated bouts of C. diff after his gallbladder surgery. In addition to taking his antibiotics, his GI recommended that he drink a probiotic called DanActive. He had been on lactobacillus, but she said DanActive had more active cultures than lactobacillus or yogurt. DanActive is made by Dannon and can be found in the grocery story next to the yogurts. She recommended that he drink one in the morning and one at night. She felt strongly enough about it that she went to the grocery store and bought it for him while he was in the hospital!

[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

[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

[riley]

Jim and Cathy — Good luck to both of you! I pray that your transplants will be perfectly successful and you will have smooth sailing ahead.

Jim — I just signed up to receive your email updates. Thanks to you and your wife for keeping the blog so we can all stay posted on how you’re doing.

Nicole

[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

[riley]

Hi Katie,

I’ve been thinking about you and your father. Did you get to see him yesterday? Is he on an anti-fungal for his pneumonia? I hope that his pneumonia is starting to show some improvement. I’m keeping both of you in my prayers.

Nicole

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