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Hi Carrie,

My prayers are continuing for all of you. I hope that it’s been a peaceful day. What a blessing that you were all able to be together today.

Love,
Nicole

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Hi everyone,

Thank you all so much for your prayers and your kind messages. My father’s funeral was yesterday, so I haven’t been online in the past week or so. I’m very touched to see all of your messages. Thank you for being there for me. I still feel like I’m walking around in a daze, but I’m sure reality will hit once our friends and family leave town this week.

All of you will remain in my prayers. Fight the good fight!

Love,
Nicole

[riley]

Hi Carrie,

I’m so glad to hear that things are looking up! I’ll continue to keep your father and your family in my prayers.

Hi Mom!!

Love,
Nicole

[riley]

Hi friends,

Thanks for all your prayers and support. I’m so new to this forum, and it’s helping me so much to feel your concern and support. I only wish I had found you all sooner!

My father’s health has been up and down since Thursday…it seems to change every hour. The latest is that his bleeding stopped a few days ago and his infection is resolving. His WBC is down to around 12 today, so that’s good news.

However, it doesn’t appear that he’s making PLTs. They gave him a transfusion yesterday and got him up to 50k. This morning’s labs showed 6k. They said infection can cause them to decrease, so they could rise again once he’s fully past the pneumonia, but I have a feeling this has more to do with his MDS progressing.

He’s on a lot of pain med to keep him comfortable, so he’s really spacy and not himself. It’s hard to see, but it’s much better than his being in pain.

I have a couple of stupid questions that I hope some of you can help me with. I know you can’t receive PLT transfusions indefinitely, but does anyone know how long you can usually go? And if Dad just stops making PLTs and can’t be transfused, what will happen? I’m sorry if that’s an awful question to ask, but I’m very worried about how this is going to end.

I was so happy to meet Kathryn earlier this week, although I wish the circumstances had been different. She is such a sweet and loving person, as I’m sure you all can tell. Her whole family was so kind to me. I’m sure her dad was very proud of his loving family. Please continue to keep Kathryn and her family in your prayers.

Thanks again for being there,
Nicole

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Has anyone heard of glyconutrients by a company called Mannatech? I have two friends who are giving me the sales pitch to try it for my father because it’s worked for other MDS/leukemia patients. I ran it by dad’s doctor, and he said it’s not worth trying. Are any of you familiar with it?

Thanks,
Nicole

[riley]

Hi Carrie,

Thanks for your good wishes for my dad. I’m sorry to hear your father is struggling with his breathing. Our fathers are both so young to be having to fight so hard to live. My heart goes out to you. You and your dad are in my prayers.

Nicole

[riley]

Thank you all so much for your prayers. They seem to be working!

Yesterday and this morning, all of my father’s doctors were telling us that there was no way he could pull through this time. His H&H were dropping rapidly — they were checking every six hours, and each time, it was quite a bit lower than the counts before.

He had a CT scan today, which showed a large amount of blood throughout his abdomen. They couldn’t tell where it was coming from, but they let us know that transfusions were not going to be able to keep up with the loss.

And then he seemed to be blessed with a miracle. This afternoon, after a couple of units of red blood, one unit of plasma, and one unit of platelets, all of his counts started coming up quickly. And his white count dropped from 37k to 27k within hours. They’re not sure that it’s an infection — they seem to think that his platelets were low and his PT and PTT were high, which together allowed a small bleed to become a massive bleed. They tell us that the bleed seems to be resolving on its own! They’re just going to keep a close eye on things for the time being.

He’s off all BP meds now and he’s holding his BP stable on his own. He may still need to have a surgery in the next couple of days if his counts drop again — to try to determine where the bleeding is coming from. They’ve cautioned us that they’re trying to avoid surgery as long as possible because they don’t think he’ll survive it. We’re praying that it won’t become necessary.

Later this afternoon, we got some great news. Dad had a BMB on Friday, and preliminary results showed his blasts at 54%. He’s never had anything close to that, and we were devestated to hear that his MDS had transformed to AML so quickly. Today we got the final results — less than 20% blasts and not AML!

Thank you all so much for your prayers and good wishes. My family and I all appreciate it so much.

Nicole

p.s. Kathryn, I haven’t had a chance to get online since my last message, so I just got your messages. I’ll try to reach you tomorrow. My prayers are with you and your dad.

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Hi Kathryn,

How are things going today? I’m thinking of you and your dad and praying that everything is progressing well.

Nicole

[riley]

Wonderful news, Carrie! My prayers for all of you will continue.

Nicole

[riley]

Hi Carrie,

I’m very sorry to hear that your father is struggling so much. It’s good news that he doesn’t need the respirator.

Have they ruled out that the mouth sores could be thrush? My father has had thrush a couple of times after being on some heavy-hitter antibiotics. A few days of Nystatin clears it up.

Is his temp still high? If they suspect an infection that they haven’t found yet, have they tried a PET scan? My father had an infection that couldn’t be found despite cultures and CTs, and on the PET scan, it lit right up for them. The doctor said it’s an easy way to look over the whole body and see what’s unusual. They can also see how mottled the bone marrow is and get an idea of whether the MDS looks to be progressing.

I wish I had some other ideas for you. Please keep us posted. You and your parents are all in my prayers.

Hugs,
Nicole

p.s. I work in human resource management. If you run into any questions regarding FMLA that I may be able to help you with, I’m here. In many companies, you can combine FMLA with vacation or personal days — if you have any paid time off left, you may be able to take it while you’re on FMLA — so you’d have the job protection of the FMLA and still be paid.

[riley]

What great news about your father’s progress! He’s a fighter!

I hope everything will go perfectly tomorrow — don’t you love it when the doctors are amazed?

My prayers for you and your father will continue. Please keep us posted as you’re able to.

More hugs,
Nicole

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Kathryn,

I’m very sorry to hear this. Your father, you and all your family are in my prayers.

Hugs,
Nicole

[riley]

Hi Carrie. I’m glad to hear that your father is doing a little better. The tone of your message sounds like you’re feeling better about things too. I hope you’ll really be able to enjoy your vacation.

I wonder if the docs are going to do a punch biopsy on your father’s bruises? My father had some swollen areas on his arms and legs, and that’s what they did for him. It was just a small sample from several of the bumps to see what kind of cells were in the skin in that area. In his case, they were trying to be sure they wouldn’t find leukemic cells. He said it wasn’t painful.

I hope the biopsy goes smoothly, and I’ll be interested to hear about it when you know more.

[riley]

Kathy, you and your father have my prayers during this time that I’m sure is scary and stressful. Please keep us posted on how both of you are doing.

My father was diagnosed at Mayo-Jacksonville last year. He was actually in St. Luke’s Hospital (because he developed an infection as soon as we arrived in Jacksonville and had to go to the ER), but he was under the care of Dr. Moreno from Mayo. If you’re father is seeing him, he’s in great hands! I can’t say enough wonderful things about Dr. Moreno.

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Frank, I hope you’ll be feeling better soon. You and your family will remain in my prayers.

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