Days +158 to +165: What Comes Next?

Let's get the not great news out of the way. Two of Ezra's liver levels have basically stayed at the same high level this week, while one level has continued to increase. The only way to know what is going on is to biopsy his liver, but no one is ready to do that yet. So the plan is to wait and watch the levels for now, and hope they decrease. 

The other issue of the week is that Ezra's hemoglobin dropped out. It's not surprising because with all the issues going on lately, they've been taking even more blood than before. We are starting with a different oral supplement. Because Ezra did not tolerate the first oral supplement, we have to add two other meds to help him deal with the iron. It is frustrating to be adding meds when we are at the point where we should be eliminating them. Such is life in post-transplant land - a vicious cycle. And so far, Ezra's stomach is not happy with the iron. 

On to better news. First, Ezra is now completely off steroids. Please, GVHD stay away. The steroids put his adrenal glands "to sleep," which means that he is not making cortisol. It is only a problem if he gets a fever or is seriously injured because his body will not be able to handle the stress. We have an "emergency" drug that we will give him in those instances. Yet another reason to fear infection. The expectation is that he will start making cortisol again within a few months. 

Second, Ezra's IgG level increased again without treatment and is now NORMAL. What can be better than the word normal? We are taking this as good sign that things are cooking in his new immune system. 

So, what has to happen next? The doctors are looking for Ezra's T cells to reach a certain initial level and for them to have basic function. At that milestone, some of the isolation restrictions will be lifted. Then the doctors will look to see if his T cells have CD40 Ligand and if it is functioning. The ultimate test - the one that will tell us if he is cured - is if he is able to make antibodies in response to vaccines. 

We don't know when Ezra's T cells will reach the first milestone, but they are checking numbers and function this week, and we will know more where things stand next week. Please send prayers that his T cells move in the right direction!

This past week, Ezra seems to have decided that he's fed up with this isolated life. For the first time, he had a meltdown over not being able to go somewhere. He has also started asking when he can stop taking his meds. It is heartbreaking, but we're glad that he's talking about it. He's a fighter and he should be angry, even though we have no good answers for him as to when things will change. 

We decided we needed some family fun and bet that between the Super Bowl and the colder weather, the Bronx Zoo would be empty on Sunday afternoon. Ezra had a great time giggling at the snuggling brown bears and riding the bug carousel (twice!). On to the next adventure.