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. 

Sunday, October 12, 2014

Iron Boy!

After two rounds of IV iron, Ezra's hemoglobin is back in the normal range. His iron stores were severely depleted - almost gone. We will continue to monitor his iron storage levels to determine how often he needs the IV iron. Unfortunately, regularly taking significant amounts of blood from Ezra to monitor him for infection and all the other issues we have been dealing with is a necessary evil. Going forward, it will be a balancing act between getting these tests done and making sure he doesn't become anemic.

After seeing his counts this week, Ezra's doctor feels confident that the drop in hemoglobin was not from a flare-up of the auto-antibodies, and it was the lack of iron. This is a relief. She allowed us to get back to the slow wean of the steroids, which is great because our number one goal right now is to get Ezra off the steroids. 

We are waiting another two weeks before checking to see if Ezra has been able to make antibodies to the vaccine, assuming his hemoglobin is high enough to handle the blood work. Another T cell check is currently at the lab. It would be a huge relief to finally see some T cell growth this month. Until he gets an adequate amount of T cells, Ezra remains at risk of life-threatening infections, and the longer it takes, the scarier it is. A critical amount of functioning T cells is his ticket out of isolation and into the world. Please T cells, grow, grow, grow!

The IV iron has helped improve Ezra's energy, although he continues to struggle with strength and endurance issues following these 2 and a half years of brutal transplant-related treatments. Last night at bedtime, Ezra proclaimed "I am VERY healthy!" We're hoping that he has the inside scoop and maybe he knows that his T cells are growing. At the least, we are happy that he feels "very healthy." Our hope is that he should only know what it feels like to be healthy from this point forward. That would truly be a dream come true.