GVHD rears its ugly head

This is Casey, reporting (once again), from the hospital. Last week we got off with a slap on the wrist, but the situation really did not improve. The nausea and headache were kept between "barely tolerable" and "tolerably horrible" and, well, after another four days or so, Sally began having some issues with vomiting. The first instance was just twice in a night (Tuesday night), but the following afternoon became intense and we brought her to the hospital to receive medication through her central line (Wednesday night). Hoping she was stabilized we brought her home, but when I went in to wake her this morning she said the vomiting had returned. So we were guests at the clinic all day, but we realized and agreed - nurse, doctor, myself, and Sally - that she was not improving and that she needed to be hospitalized.

So, we've been here for a few hours and she seems to be resting semi-comfortably. What we are hoping is that the GVHD (which is the principal cause of the nausea and vomiting) can be quickly treated using Prednizone (sp.?), an oral steroid which Sally had originally resisted taking due to side effects, but is now resigned to as her best hope to feel as better as possible, as soon as possible. However, we first need to get her nausea and intense head pain under control, and that, for the moment, can only be done through her central line - hence, the hospital. The doctor says he believes she will need 2 to 3 nights in order to feel well enough to go home and continue treatment orally.

I will try to update you in a few days or so. For the moment (as has been the case for the past several days), she is sleeping/dozing A LOT and is unlikely to be able to take phone calls. Thank you to those of you who have sent postcards, cards, letters, and gifts - your kind thoughts and words are very much appreciated.

briefest of updates

Hi, I'm Casey, Craig's sister, and for the moment, Sally's caregiver. I got here April 12th - so I owe everyone a big apology for not posting anything sooner, and for only posting a bit today. In our effort to wait until one issue was resolved, another came along, and before we knew it, ten days had passed. I hope to give a very, VERY brief summary of what has happened, at least medically speaking.

Sally was in the hospital last week, as Craig mentioned, for what turned out to be GVHD. She was released after three days with a "light" medication. She had two great days followed by three crummy days (crummy = nausea, headache, fatigue, no appetite). To top it off, today (also another crummy day for the above reasons) she woke up with what appears to be a cold. We took chest x-rays and it looks like she has a possible infection in the lungs. I am blogging from the hospital right now, as she had some increased chest pain and they wanted to get another look at her lungs. We are hoping to be let off with the antibiotics and be able to return home, at least until tomorrow, when they will do more extensive testing.

As you can imagine, due to the extreme fatigue, Sally has been sleeping a lot. We have literally not been able to respond to all phone calls, cards, and packages YET, but are hoping that once the GVHD is under control and this cold is treated, that we will be able to give each of you a personal response. In the meantime, Sally is enormously grateful for your kind words and support.

I hope to be able to update you again soon, or else Craig will. At least when I post, you know there WON'T be spelling errors! ;)

Fri the 17th.

Hello again,
Latest news is Sally is being discharged from hospital later this afternoon. She did get a scope done which showed some inflammation and are going to put her on meds to calm it down. She is feeling alot better today and in good spirits.

Latest update

Hello,

Sorry again for falling back a few days to update the blog. Thank you to everyone who has helped me back in spokane. Trying to catch up, maintain and get ahead with everything has been overwhelming.
Talked with my sister Casey, who is in Seattle playing caregiver till mid May this am. Sally is back in the hospital with alot of nausea and sickness. She is otherwise good, but when you cant take your meds, they put you back in to give them i.v. Sally will be getting a scope later today to evaluate for GVHD. Graft vs host disease. it is common and place her on steroids if that is what is causing the problems. GVHD is common for the first 3-4 months after translplant.
Sally does have a long history of nausea with meds. She is taking alot of them including pain meds etc which only makes it worst.

I expect to be getting a phone call later today and will post a quick upate later tonight.

And for those of you who have picked on me for my mispelled words, REVENGE is best when served cold.
Craig

nothing new

Hello,
Sorry for the delay in keeping up with the blog. Just got off the phone with her care taker and she is doing great. sleeping has been the key last few days. The headache is better and she saw the doctor a few days ago and thinks everything is going great.
Sally goes for bone marrow biopsy to look at the new cells in the marrow and make sure they are taking up residence and kicking the remaining old cells out. Good thing the schedule those on fridays so she can rest over the weekend. Those mothers hurt.

I'm back in Spokane for a few weeks, so the relay of information has somewhat of a delay.
The boys and I are doing great. We just got done cleaning up the house and getting settled again. Has taken us five days to accomplish catching up. Sally is good at that part, not I.

Headache

Hello
Sorry for the delay on the post. It has been crazy with the boys here. Sally was admitted back to the hospital on Fri morning for a headache. Of course they did a CT and all the tests and everything is negative. They said its common with a transplant. They have her drugged up and waiting for it to stop. Of course being on 50 meds always bring into question if it could be a side effect. Her nausea is minimal and eating. Otherwise everything is going great except the headache.
The boys had a blast. Toured Safeco field, home of the Seattle Mariners. Went on ferry ride and multiple other things. I will post some more when i get home here in a few days.