Sunday, October 19, 2014

This Is Either Good News or Not So Good News

We received some confusing medical results this week. Ezra's T cells shot up - not to normal, but well past the initial level that the doctors were waiting for him to reach where certain changes are made on his medical care. This is a surprising result given that he is still on steroids, a full dose of immune suppressant, and he has barely had any T cells for a long time. We would have been jumping for joy over this news, except it came with a confusing result - his IgG is down. With more T cells, his IgG should have increased. So, does this mean the new T cells aren't functioning properly? Is it because of the steroids and immune suppressant? Or are the T cells too new and not yet fully communicating with his B cells in order to make IgG?

Or, scariest of all, could the T cells possibly be his old, defective T cells and not healthy donor T cells? Our minds immediately went to that thought. We have not checked his chimerism for three months because of all the other issues going on and the effort to conserve blood. This is the longest we have gone without checking chimerism. We can't help but worry that this burst of T cells is made up of old, defective Ezra T cells. Ezra's doctor does not think that this is what is going on, but anytime we have been told that something about Ezra is medically "surprising," it has always been a bad thing. We are trying to be positive and focus on the most likely explanation is that the lack of IgG is from the immune suppressing drugs and that these are very new T cells that need more time to properly communicate with his B cells.

The plan is to send out a chimerism test and a slew of other tests later this week to try and get a better sense of the state of his immune system, assuming his hemoglobin can handle the blood work. We know that most likely, there will be no black and white answer - the situation will be filled with gray. The most likely outcome will be that we need more time for everything to sort out. That's just how this journey seems to go. It will be an anxiety-filled couple of weeks until we have his test results back - especially the chimerism test. 

Thankfully, we have next Sunday's Walk for Life to distract us from our worries! We are so grateful to everyone who has generously donated and to all who are joining us on Sunday. You can still help us celebrate life and help add donors to the registry by donating at

If you plan on attending the event, please register in advance - you will save on registration fees! It will be a fun and inspiring day!

We hope that by our next update we have at least some clarity as to the state of Ezra's immune system. It will be a miracle if the appearance of these T cells ends up being good news. Even if it ends up that things are still mostly covered in gray, at this point any step toward the light will feel like a leap to us.