Colonoscopy in the morning

We visited at the hospital today, but she got tired, and I got tired, and so I took the kids home a bit early. As it turns out, they are going to give Beth that colonoscopy in the morning. Yes, she’s been drinking the stuff. They do want to rule out that her gastrointestinal problems are from GVH. We’re hoping she’ll get to come home afterward.

UGI, Colonoscopy on Monday

I visited Beth at the hospital on Saturday. She seems to be doing well. She’s probably going to be there through Monday or Tuesday. I think the plan is that she’ll have both an upper GI endoscopy (UGI and a colonoscopy on Monday. As unpleasant as that sounds, it’ll let the doctors know if she does or doesn’t have the GI version of GVH. The doctor told her that she has pretty much run the gamut now of things that can go wrong. Basically, outside of getting pneumonia, everything that could have gone wrong, did go wrong. And now she’s made it through all that. (And this is a factor now that bodes well for the future).

Beth may get to come home Tuesday

Little by little, she’s getting through the multitude of complications she’s been dealing with. The BK virus, which was manifesting as a urinary tract infection, has pretty much cleared up. Her CMV virus numbers (the more serious of the two viral infections) came back negative on the last test. It had been off the upper end of the scale, in the millions. They’ll take another test on that tomorrow, and have the results Tuesday. If that’s negative, she should get to come home.

She’s still pretty beat up. The blood clot is still there, making her right arm to look like Popeye’s arm. She still has those signs of malnutrition, too – her taste buds seem to be fried, and she still gets a bit of nausea when she eats. In addition to the fluids they were forcing into her (for the urinary tract thing), the lack of protein in her diet made her swell up, basically, from the waist down, like the bellies on the kids in the World Vision commercials.

Now comes the healing process, we hope. Exercise should clear up the swelling. We’re planning to take her for walks. She’s asking me about food again. (Food that I cook is considerably better tasting than what she gets in the hospital. That’s the sort of thing that could get her eating properly again!)

All in all, if GVH doesn’t flare up, we should continue to be able to say she’s beat the leukemia. True, there are more Chimerism tests coming. But beating a disease like leukemia is very much a kind of miracle in our day. Now that this is behind us, she should gradually be able to heal from all of this.

GVH skin ailments

We are down at the medical short stay unit today, and I believe Beth is going to have another bone marrow biopsy today, and a Chimerism test. But the nurse is not sure. (It would be the second time they didn’t know what was going on here.)

Last week Beth had some pretty bad rashes. Some of these seem to be healing. The photos here show some of this. She is still plenty itchy, but seems to be getting better.

GVH skin ailments

Last week Beth had some pretty bad rashes. Some of these seem to be healing. The photos here show some of this. She is still plenty itchy, but seems to be getting better.

For better, for worse

Beth’s numbers are good — last I saw, her hemoglobin was in the 11’s, (post transfusion, but she has never been this high since we started this), her white cell count is mid-6’s (right smack in the normal range), and platelets are near 100, (almost normal), but she is continually maddened by GVH skin rashes. These are painful and itchy and they are everywhere.

This morning her ears were bright red and she had a red stripe on the top of her head.

Next week will be another bone marrow biopsy, and the “Chimerism” test that will tell us, we hope, that her old marrow has been completely destroyed by this procedure and all of these maddening, though intended, side effects.

Skin biopsy today, to test for GVH

They took a skin biopsy today, to verify that all of the funky markings on Beth’s skin is graft vs host disease. The PA who took the biopsy didn’t want me to photograph it. But after administering a local anesthetic, she used a small, hollowed out device that looked like the eraser-holder of a mechanical pencil. She rotated it on the skin on the back of Beth’s shoulder, pushing it deeper and making a small, circular cut on the skin. When she pulled it out, the skin came out with it, just a bit, but it was still connected on the inside. So she got a small pair of forceps, yanked on the loose skin a bit, and sliced off the small, circular piece that just been carved. It was about the size and shape of the eraser from a small mechanical pencil.

The purpose of this, now, will be to examine it under a microscope, to verify that the T-cells (lymphocytes, or white blood cells that handle immunity) are indeed attacking her skin.

While it would indeed be good news if that were the case — if they’re attacking her skin, they’re also attacking any of the remaining old chemo-and-radiation-infested bone marrow that may be left. Unfortunately, the process is not a very comfortable one, and it causes her pain and itching that just doesn’t go away. Reminds me of the time Nate got poison ivy real bad …

We should have the results of this by Thursday.

Here come the GVH skin outbreaks

She’s got this stuff pretty much all over her body. It’s both painful and itchy.

MSS unit news

Really we are back on T7, because the MSS is closed for the weekend, but we are in the MSS phase of treatment, so I thought, just go with it.

Beth’s numbers appear to be good: hemoglobin over 10 (she was never there before the transplant), white cells over 4.5, and even platelets up a bit to 52. Her blood pressure (treated) was 122/80, though she was still complaining of pain and itchy skin, both likely from GVH. She is getting the IV antibiotic Daptomycin, along with some magnesium. Barring any complications, this should be the routine for a while.

“Technically, the first day of engraftment”

The doctor was in, and even though Beth has been feeling pretty bad, he said, “the worst is over”.

The doctor just told us that technically, today is Beth’s first day of engraftment. Her white cell count was 2.0, so she’s no longer neutropenic — can eat anything she wants, there is no need for us to maintain a sterile environment at home, etc. She can fight the fevers on her own.

She’s feeling quite a bit of bone pain, still some minor fevers and headaches, but as the doctor said, “the worst is over”. The nurse here, too, said that one thing they don’t say enough about is that this second week past the transplant is the worst. But she has no signs of GVH at the moment — liver, GI tract, and skin are at an acute risk at the moment, but no signs of it. I guess there are still opportunities for complications, but the worst is past.

The most annoying thing is the mucositis — the mouth ulcers. They’re affecting her ability to eat, giving her pretty decent heartburn. She’s definitely been through the wringer.