Back to Reality

Johnny has now had two pretty good days in a row. He is feeling a little better, and most of the news from the extensive team of doctors has been pretty good lately. We've definitely seen more smiles from the doctors. That's good, but Julie and I have to stay grounded and remind ourselves that Johnny is really, really sick. If anyone walked in to his room they would immediately recognize that Johnny is not well. Most of his hair is already gone, and he is very thin and pale. Not to mention he is hooked up to an IV pole. But after what he has been through the last two weeks he looks really good to us. I guess everything is relative. The one thing about this place is that if you start losing perspective there is always someone to bring you back to reality. Today that person was Dr. Su.

Joel had offered to stay with Johnny for a couple of hours this evening so that Julie and I could go eat dinner together and catch up a little. We really haven't spent 15 minutes alone together since this started several weeks ago. Right before we were to head out I passed Dr. Su in the hall, and he said he needed to talk to Julie and me in about half an hour. He said he needed to get the CT scan that Johnny had taken earlier today so that we could go over the results. Apparently there were "mulitple irregularities." I didn't like the sound of that. Earlier today the same doctor said that the CT was really only precautionary, and that because Johnny was feeling better he really didn't expect to find anything. I think he was even smiling when he said it. This evening the smile was definitely gone.

The CT scan showed two areas of concern. One is that he is still showing some pretty severe irritation in his intestine. At this point there are no tears or lessions, but until the surgical team takes a look at the CT to make a better assessment Johnny is on "colon rest" again. Basically nothing by mouth to reduce any possible further irritation of the intestines. That's the good news. The CT scan also showed lots of white, fuzzy looking, spots in his lungs. These spots could be several different things (none good), but the doctors are almost positive that this is a fungal infection. That is not good news. Apparently fungal infections are not easy to treat, and the drugs used to treat them are pretty nasty. Again, everything is relative, and they probably aren't that bad compaired to a lot of the chemo he gets, but they do come with a bunch of potential side effects. Unlike the chemo, he will have to get these drugs every day, twice a day, for at least the next two weeks. Unlike a bacterial infection a fungus infection cannot be cured by drugs alone, and Johnny's immune system will also need to rebound so that he can fight this. Johnny hasn't had much of immune system for the last few weeks. Although his ANC did come up to 10 yesterday he will need to be much stronger to fight this infection. To help him he started recieving a drug called GCSF that will help boost the production of white cells. There is some "theoretical" danger that this drug may also cause his bone marrow to produce more of the leukemia cells, but the doctors have no choice but to use it. He may also have his next round of chemo pushed back a little to give his system more time to strengthen. Neither of these stratagies make the cancer doctors happy, but much like the bacterial infection he had last week, if he doesn't beat this first the cancer won't matter much.

The plan right now is to start the new drugs tonight. He is getting his first dose now, so as I write this I am constantly watching him for signs of tremors (one of the side effects). The doctors will monitor his fever and then do another CT on his chest in about a week to see if there is any improvement. The Infectious Disease doctors would also like to do a biopsy of one of the spots so they can confirm that this is a fungus, and if so which kind, but they will wait a few days to determine if that will be neccessary. Because of everything he has already gone through he is pretty weak, and any type of surgury will be avoided if possible. Johnny does have a CT scheduled in the morning to take a look at his head. The doctors want to confirm that there is no infection in his sinuses. If so it will need to be cleaned out surgically since drugs have a difficult time getting to that area.

This is just another hurtle in Johnny's path to a bone marrow transplant. It's like he's a prize fighter who is trying to get a shot at the champ. He just has to kick a little more butt to get there.