My Dad

[covergirl]

Katie,
What great news. Blessings to your Dad and family.

May he continue to be blessed with good health.
–cheryl

[katiebear]

My dad went for a checkup yesterday. He needed another shot of neupogen yesterday. His doc says that his whites are low because of the antibiotics he is on for CMV. He lost a little more weight also. The doc was not happy about that. So far though, things are good. Thank you everybody again for your prayers. They are working.

Katie

[katiebear]

My dad is going for his 100 day BMB post SCT tomorrow. Please pray. Everything seems to be alright except his counts being a little slow coming back. This is just a little unnerving, especially after having a slight reprieve.

[katiebear]

Well, my dad has relapsed. I don’t have many details other than there are blasts in his blood already. His doctor mentioned doing a DLI. I don’t have much info at this point because I couldn’t find the words to ask my dad. Thank you for listening.

Katie

[sdrake]

Katie,

I am so sorry to hear that your dad has relapsed. My prayers are with you all. Keep us posted on how things are going.

Take care,
Shari

What is a DLI?

[Mary4Mike]

Shari,

I wondered too, so I Googled it…Donor Lymphocyte Infusion.

[riley]

Katie, I haven’t been checking in here as often lately, and I was so sorry to log on today and see your latest message. I’ll be praying for all of you. Have you been able to gather any new information since your last post? If you see this and have a few moments, please write again and let us know how your father, you, and your family are doing.

Love and prayers,
Nicole

[katiebear]

Nicole,

I don’t have too much more info. I do know that his blasts are over 60%. He was admitted into the hospital on Thursday. He is very frustrated as his doc told him he would only be in 3 or 4 days for chemo. He was told yesterday that it will be more like 4 to 6 weeks. They have him on dacogen for 5 days. Not sure of the dosage. I know that he is more tired than he’s ever been, and he is seriously thinking about leaving the hospital and quitting. He is sick of this. There was talk of donor lymphocyte infusion initially, and I don’t know what happened to doing that. I know they have to go back to his donor in Europe to do that and I think time might be a factor. Thank you for asking about us. We are holding up. I hope you are well.

Katie

[riley]

Katie,

I’m sorry to hear this. I can understand why your dad is feeling frustrated about being in the hospital so much longer than he was expecting, but it’s a good sign that there are things the doctors can try to treat this relapse. I’m not at all familiar with Dacogen, but I wonder if they could be thinking that after that he might be able to have the DLI.

Your father, you and your family will be in my prayers. I’m here, if you want to talk. Feel free to email or call me.

Nicole

[poppyshope]

Katie Call Dr. Felman or Dr. Roboz at Columbia Presbyterian right down the road. My dad was in sloan doing inductiond chemo that second round is too much that infection will take over if they don’t get that under control first…see what they say first and I know that at sloan they work with them at columbia. My dad was with dr. boruchov and comenso and dr polaris was from the transplant team he was on the 12th floor doing induction. Anyway, he too did not go into remission and that chemo weakened him so much that he could not fight he was out of the hospital 12 days when he died on the way to columbia- i wish we went sooner. Right now you are scared and grasping step back and take the time to call these doctors. Their protocol is different then sloan, also can you get to MD anderson they are doing a lot now? Even if you can’t call they were the ones who told me to call columbia- my dad was too weak to go. Katie Sloan told me to enjoy my dad and do transplants that we had 3-6 months after that 2nd round of chemo he got 12 days and died 2 months ago…you have a day to make calls i would do it. I will keep you in my prayers and feel free to e-mail me I will even make the calls for you I know how hard it is to make the time when you are caring and worried for someone. Stay strong- Jen

[katiebear]

Nicole,

From all I can read, I think you’re right. Reaction to DLI is best when in remission. My dad said yesterday that Legionaire’s Disease is floating around the hospital and nobody can shower or drink the tap water. Hopefully that won’t become an issue for him.

Jen, I’m going to bring up Columbia and those doctors to my dad and see what he says. I know he trusts his doctors at Sloan. I hope he will take the advice. I know the window for opportunity is very small with this disease, and if he doesn’t respond in some way to this chemo, I can’t imagine what will happen. Thank you very much.

Katie

[gemloyear]

Katie, I’m sorry to hear that your Dad has relapsed. I will pray that he will improve on the dacogen.Be sure that he takes every precaution to guard against the Legionaires. My husband had it, and it was a tough battle. Wishing your Dad the best.
Take care, Ellie

[poppyshope]

Katie- I hope i did not scare you but this is a scary disease and unfortunately they have the potential to get very sick very quick! Can you call now and start the process with columbia? I just think Sloan’s protocols are strict and they are not too into out of the box thinking- don’t get me wrong my dad would have died sooner without their help they are great, but when they are done the window, for lack of a better word, is sooo small -days- my dad was the same he trusted his docs and so did I – it wasn’t until they said Hospice that he said to call Columbia. Right now i think i should have pushed for it as his Proxy- but i did not want to take away too much from him-does that make sense? I guess i have the luxury of hind sight whiich you do not, so I would push and even start the process- Also, there is a Dr. Estey at MD anderson Sloane knows him well my dad’s doctor told me to call him knowing Sloan would not go further, and i did they sent the records and Dr estey said goto columbia too. You can even fax the records and see what they say, a phone consult- then you have more info for dad. Sorry to go on and again anything i can do let me know- Prayers to you and dad- Jen
Also- i know Dr. estey was going to fred hutchinson after Md anderson so you can try him there he will call you and give you his cell to call him back a lot of compassion!

[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.

[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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