Remission

Jeff's biopsy showed that there is no residual leukemia in his bone marrow. We can all rest better tonight and Jeff can continue on his way to complete recovery. Everybody should have a drink to celebrate!

Feeling a Little Better

Jeff is feeling much better now than he was last week at this time. His rash is pretty much gone and he's now down to 100mg of prednisone per day. At this dose, we won't have to worry nearly as much about his blood sugar, and the other side effects should also lessen considerably. The steroids do make him very hungry, and even though he can't taste much yet, he's been eating like a horse. The labs that were drawn on Wednesday looked pretty good. His platelet count is still very low, but he's making enough to avoid an extra trip to Hershey for a transfusion. There were no immature cells in his blood stream, so we have hope that the biopsy (to be taken Monday) will show that Jeff has recovered in remission.

Home

Jeff is making enough of his own blood for us to come home. He'll have a biopsy next week at his doctor's appointment, and we'll go from there.

Day 36

Well, I was thinking that we've been here forever, but I guess it's only been 5 weeks. Although, I must say that I wouldn't even want to be away from home for 5 weeks if I was on a vacation, and this is nothing like a vacation.

Jeff's white count is back in the normal range. His H&H is improving very slightly every day, but his platelets are still dropping, albeit very slightly. He hasn't needed any transfusions since Tuesday, and hopefully, we'll see an increase in platelets soon, so that we can come home.

A Better Day

Jeff was feeling much better today...less itchy and dry, and only spent about one hour in the hospital. He did not need any blood products today and his white blood count is up to 2.5. The rash is slowly dissipating. The only raised areas of his skin are on his legs and arms now. His face and trunk are looking much better, and some areas are very close to normal now. I'm hoping at his doctor's appointment next week that they decide to start weaning him off the prednisone. This diabetes stuff is a pain in the butt, and the steroids also make him quite anxious.

Discharged Again

Jeff was once again discharged from the hospital today. The skin biopsy that was performed on a chunk of Jeff's rash showed that it's consistent with GVH, so we got the official diagnosis today - Grade 3 Acute Graph vs. Host Disease. As I've mentioned before, this is good news. For now, the GVH is being treated with lots of prednisone and tacrolimus. Because of the dose of steroids he is receiving, his blood sugars are all out of whack, so now we're dealing with steroid-induced diabetes. This means checking blood sugars four times a day and giving insulin as needed. This should be a temporary problem that goes away as he is weaned off of the prednisone.

The next step will be Day Hospital for infusion support. Jeff's white count is up to 1.1, which means that he is no longer neutropenic, but still not fully recovered. After his white count stabilizes, his red blood and platelets should also rebound.

We both got a little frustrated today. Once again, it took forever to get discharged from the hospital. Yes, six hours feels like forever when you're waiting to leave that god-forsaken place. I try to stay upbeat as much as possible, but today, I ended up making an already cranky Jeff a little crankier. I just got so mad when we were still at the hospital at 3 pm.

Although the rash is starting to ease up, Jeff is still itchy and uncomfortable. The steroids are causing his face to look and feel puffy, and when you combine all of this with the incredibly dry skin caused by the chemo, you get a not-so-happy Jeffy. The GVH is also causing his eyes to feel very dry.

The science involved in the treatment of leukemia (and cancer in general) is still very imperfect. The fact is, a Donor Lymphocyte Infusion, the best treatment for relapse after transplant, only has about a 50% chance of working. I've mentioned that Dr. Claxton thinks that Jeff will recover in remission, but there is still the very real possibility that he will eventually relapse. The hardest part of all of this is knowing that no matter how much hell we go through now, we might have to do it all over again, and that with each relapse, the odds of success drastically decrease.

I'm not being pessimistic right now. The fact that Jeff got some GVH is a very good thing, but sometimes, I give my blog readers the facts, without really being thorough. I guess I'm just elaborating a bit more tonight.

Rash

Jeff looks a bit like a lobster and is still a little itchy. The steroids started on Saturday seemed to have stopped the progression of the rash. They have also been helping his kidneys, as his creatinine level is now back in the normal range. If nothing else crops up, he'll be discharged tomorrow. We'll continue daily visits to the day hospital, as he still needs to receive blood products.

The skin biopsy of his rash should be back some time today. If the results are non-specific, the doctors will officially declare the GVH.

Another Fever

Jeff has another fever, and so he was re-admitted to the hospital again this morning. His rash has progressed quickly, and now covers his face, head, and most of his trunk. He looks like he's very sunburned. Dr. Claxton started him on some steroids to treat for acute GVHD. Although we are pleased that he seems to have developed some GVH, we have to hope now that the drugs will be able to control it, as severe GVHD can fatal.

Update

Jeff is developing a rash on his face that is presenting like GVHD. This is good news, but they'll continue to watch it over the weekend before making a definite determination. He may still get another batch of stem cells, but if the GVHD progresses far enough in the next few days, he probably won't need them. His white count is up to 0.3 (normal is 4-6), which is a good sign that his bone marrow is recovering from the chemo.

Discharged

Right now, Jeff is pushing JD around our little apartment in a box. JD has a big smile on his face and so does his Daddy.

There wasn't much change in Jeff's kidney function, and the docs expect that it will improve over the next couple of days. He's been taken off the penicillin-type drug that they assume caused the problem.

We'll be going to day hospital for infusion support and monitoring everyday for at least the next week.

Kidneys

The indicator that gets checked everyday to make sure that Jeff's kidneys are functioning properly was elevated today, so Jeff was not discharged from the hospital. This was probably caused by one of the many drugs he is taking. Hopefully, things will look a little better tomorrow, and he'll be allowed to come home.

Knock on Wood

Jeff's been fever free since yesterday morning. If all goes well tonight, he'll be discharged tomorrow. Still no white count, but we should see something within the next 4 or 5 days. He is very much looking forward to being back at the apartment with JD.