Although Johnny’s liver functions are slowly getting better we are still pretty much in the same place we were this time last week. His liver is still very enlarged, and his bilirubin is very elevated. There were also some indications from the GI scope that blood is being routed around his liver indicating that there is some blockage inside the organ. As we have noted before; the liver is a very resilient organ, and given time almost all of these problems will probably correct themselves. The problem is that we are out of time. Over the weekend we noticed a small but steady increase in his WBC. It’s still very low, but definitely increasing. On today’s lab results we discovered that he again has cancer blasts in his peripheral blood indicating that the leukemia is once again active. They had scheduled a bone marrow aspiration for today, but with blasts in his blood the doctors decided to pass on putting him through another procedure. They now know that his bone marrow is active again even without the test.
We are now faced with two choices. The first choice is to start another round of the Clofarabine tomorrow. This is very risky since his liver is already is a state of distress. The concern is that another round of chemo may damage it to the point where he will not be eligible for a bone marrow transplant. If that happens then we are basically putting him through all this for nothing. The second choice is to start “comfort care.” That would entail taking him off all the anti-infection medicines and other stuff that may be making him feel bad, and starting him on some meds that will try to suppress his WBC for as long as possible. For some kids this might allow them to go home for a while, but Johnny is too weak for that. He also will need platelets daily, so he would have to remain in the hospital. Right now we don’t have a home to take him to, so getting him out of here is kind of a mute point. At this time Julie and I have opted to try the Clofarabine. He will probably start tomorrow, and go for a full five days. Dr Dryer is going to reduce the dose to help with the stress to the liver, but it will still be a risk. Both of us hate to put him through chemo again while he is so weak, but while there is still a chance we can’t just give up. The doctors will be monitoring his liver very closely, and if they think we have passed the point where the damage is too great we will stop.
I have requested a 30 day leave from work so that I can spend as much time with Johnny as possible as we manage through this next challenge. My employer has been tremendously supportive over the last four months (hell, over the last three years) while we have been dealing with Johnny’s illness, but with everything that is going on I think I have crossed the line where I can keep all the balls in the air. This is a difficult decision for me for many reasons, but I don’t think I can put this off any longer.
Onward,
Mike