January 24th......Graft Verses Host Disease

We went to the clinic Friday for her routine check up. Generally Charmaine is doing good. All of her counts still are in the normal range except for the iron level. Normal iron count is around 20 but hers is 2000. It is normal for the iron count to spike after transplant but usually comes down. There is a new med that lowers your iron count that she will have to start taking but before she can start they have to do an MRI on her liver which we will have done Monday.

She also had to stop wearing her contacts because of dry burning eyes and some matting. We have an appoint with an eye Dr. at Emory on Thursday.

She started taking Sprycell again Saturday. That's the chemo pill to help prevent leukemia from coming back again. It is making her nauseated and weak. Hopefully these will go away as she gets used to taking this again. She will have to take this the rest of her life. This drug will lower her white cell count for a while so she is being bombed with antibiotics to prevent infections during this time.

She still has splotchy red spots on her skin on her back and arms. also, she still has some ulcer like burns in different areas from the radiation and chemo treatments. These are treated with oral meds and topical lotions.

She has had a nagging hacking cough for 2 or 3 weeks. No infection but quiet annoying for her.

All of the above problems fall under Graft Verses Host Disease the Dr. said. He said she has chronic GVHD. This is her body trying to fight off the new stem cells she got. It is normal to some degree and even favorable but can be deadly if left unchecked. Sometimes people 2 years after transplant have some problems surface due to this.

Will update you on the liver results. We were a bit concerned when he ordered the MRI on her liver.


Sam

January 15th

I haven't updated lately but Charmaine is doing good now. She is almost over the side effects of the chemo and radiation had on her body. She still has some fatigue but it is minor now because she is still taking steroids. She developed a very bad cough and head cold but the antibiotics have nearly stopped that.

Still having to live in a bubble for the most part for a while longer. Getting a little stir crazy having to stay home all the time.

Her hair is about 1/2 inch long now and is a beautiful salt/pepper color and feels like velvet. Her hair came back black instead of brown. They say a hair color change is not uncommon after transplant.

Her finger nails and toe nails are healing back slowly but ok. She lost all of them which is not uncommon.

Thank you all for your continued prayers and concern for her.

Sam

New Year Day 2010

She insisted on staying up last night to see the new year in. At times in '09 she wasn't sure she would get to see it.

The Dr put her back on steroids due to a mild rash and they are making her jittery and hard to sleep. The cough he said was just a virus she has picked up probably from the kids. Gave her some new meds to help that. Still coughing pretty bad but feels ok.

The results from the FISH test came back negative. This means they can see no live leukemia cells in her system.

Happy New Year to all.

Sam