It seems that always when we reach a period of calm and we start to see a glimpse of light, it disappears before we can even breathe a sigh of relief. Over the past two weeks, Ezra's hemoglobin has been dropping. We spent the last several days in a panic because the cause of the decrease was not clear. We were very fearful that it was the auto-antibodies ramping up again. Ezra's doctor was already talking about increasing the steroids again, and we were in a state of despair. We just received word tonight from his doctor that it appears that Ezra is once again iron deficient. He has had a lot of blood drawn over the past month for various reasons, and it may be the case that the increase in blood draws put him over the edge.
We never thought we would be relieved that Ezra is iron deficient, but compared to the other options, we are relieved. We don't have a complete picture of what is going on because Ezra's doctor wanted to try reducing the amount of blood taken this past week and did not want to add any additional tests. We are praying the culprit is "just" the iron deficiency and not the auto-antibodies. He will start IV iron again this week. It will likely take some time to rebuild the stores as it did last time, but hopefully his counts will improve quickly.
Ezra's doctor wants to wait a month after the vaccine to test for antibodies to give him more time to respond, although now with this latest issue, we don't know when we will test. We also got back results on testing performed on a certain aspect of T cell function. The results show that the small number of T cells that Ezra has are functioning fairly well. Not normal function, but improving. This is great, assuming he can avoid any increase in steroids from here on out.
Once again, we head into a new year hoping that it will finally be the year of the cure. Last year on Rosh Hashanah, we found out that Ezra engrafted and was 100% donor. We had many high hopes for this past year. We remain grateful for what we have and hopeful that this coming year will bring health for our sweet boy. Wishing all a happy and healthy new year.
P.S. If you are ordering a Team Ezra shirt and want it before Oct. 26, please order this week! http://www.goodthreads.com/SharedDesign/TeamEzra3.design
We never thought we would be relieved that Ezra is iron deficient, but compared to the other options, we are relieved. We don't have a complete picture of what is going on because Ezra's doctor wanted to try reducing the amount of blood taken this past week and did not want to add any additional tests. We are praying the culprit is "just" the iron deficiency and not the auto-antibodies. He will start IV iron again this week. It will likely take some time to rebuild the stores as it did last time, but hopefully his counts will improve quickly.
Ezra's doctor wants to wait a month after the vaccine to test for antibodies to give him more time to respond, although now with this latest issue, we don't know when we will test. We also got back results on testing performed on a certain aspect of T cell function. The results show that the small number of T cells that Ezra has are functioning fairly well. Not normal function, but improving. This is great, assuming he can avoid any increase in steroids from here on out.
Once again, we head into a new year hoping that it will finally be the year of the cure. Last year on Rosh Hashanah, we found out that Ezra engrafted and was 100% donor. We had many high hopes for this past year. We remain grateful for what we have and hopeful that this coming year will bring health for our sweet boy. Wishing all a happy and healthy new year.
P.S. If you are ordering a Team Ezra shirt and want it before Oct. 26, please order this week! http://www.goodthreads.com/SharedDesign/TeamEzra3.design
