Bucky Update: 12/30/12

Hello family,

I saw Bucky this afternoon.  He was doing well considering all he's been through.

I didn't write down his blood counts, so I hope I get this right...His neutrophil count is down to zero and his white blood cell count is .1

So he has absolutely no immune system.  So it is imperative that visitors wash their hands before entering his room.  We love you, but please don't come if you have a cold, the flu, or any other infection.  If you think you are getting sick, just don't come.  I know I sound rude, but I would really like my husband to be able to get out of the hospital as soon as possible.

After transplant, it takes 14-21 days for the cells to begin to grow and function.  (Bucky is on day 2.)  One of the risks of transplant is graft-versus-host disease (GVHD).  To prevent GVHD, they give Bucky an immunosuppressant, tacrolimus. 

In order for Bucky to get out of the hospital he has to have no sign of infection, no fever, no signs of uncontrolled GVHD, and he has to be eating and drinking enough.

Recovery for his transplant can take up to a year (or more).  His taste buds should return to normal in about 4 months, but his energy level could remain low for a long time.

We are hoping that the healthy stem cells will recognize the residual leukemia and destroy it and that his next bone marrow biopsy will show no leukemia.  "The Lord is able to do all things according to His will, for the children of men, if it so be that they exercise faith in him.  Wherefore, let us be faithful to him." (1 Nephi 7:12)

Thank you for your prayers.  We can feel them and are so grateful for them.

Love you all,

TJ

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Bucky Update: 12/23/12

Hello Family,

We had a quick visit with Bucky today. I have asked him how to describe how he's doing, he told me "better than [he] deserves." Well, I don't believe that, so we're going with better than expected.

He still gets up and walks to radiation and back-most patients don't/can't after this point. They're just too fatigued.

His blood counts were up today. The doctors can't explain that.

He still has his hair.

He no longer looks sunburned (a side effect of the kepivance he took a week ago).

His face is normal again. (It got really fat from water retention-doctors don't know why...I'm beginning to think that doctors don't really know as much as I once thought...)

 Food tastes funny, but he is still eating.

And he still laughs at how hilarious I am. (At least some things haven't changed!)

Thank you for your prayers and faith and all you do for us. We have been so blessed.

 Love you all,

TJ

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Bucky Update: 12/16/12

Hello Family,

We got the results from Bucky's last bone marrow biopsy--he is still in morphological remission, with 3% blasts.  For comparison, when he went in, in October he had 93% blasts.  What happens when it reaches 100?  I will tell you...I don't know.

Basically, had he been diagnosed 20 years ago they would say he is remission, but they have better ways of detecting leukemia now.  He still has some residual leukemia, so we are really counting on the transplant to take care of the rest.  That's called graft versus leukemia (GVL).

We want GVL because that means that the healthy new stem cells that Bucky gets from his brother will recognize the remaining leukemia and fight it off.

Bucky goes into the hospital early Wednesday morning to start radiation and some huge doses of cytoxan  (the chemo that is related to mustard gas).

After transplant, they will be looking for signs of infection and graft versus host disease.  (This would be his brother's T lymphocytes attacking Bucky's tissues.)  But, since they have 8 matching HLA types, we are hoping this will be minimal.

Thank you for your prayers and faith.  We know that Bucky is in the Lord's loving hands.

Love you all,

TJ

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