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I know many of you have called about his appointment yesterday, and for those of you still waiting, I'm sorry I haven't posted before now. I accidentally hit something on my blogger sign in that turned everything to Arabic! I don't know how to get it off - so if anyone has any ideas, please help! It must be only on my computer because I am using Michael's to make this post and everything looks fine! Since I can't read Arabic (I know, some homeschooler, right?), I am unable to figure out how to get on to make a post!
Okay, enough fluff, let's get down to what's important. Basically, we have no real answers. The sideroblastic testing was technically negative, but actually inconclusive. Here's why: when a person has this particular disease, iron enters the developing red blood cells and accumulates in the mitochondria, giving it a ringed appearance (sideroblast). William has been so depleted in iron that his body is not storing it, so there wasn't enough red blood cell storage in the marrow to look at. What we have to do now is wait for the chromosome testing to come in. That will tell us if he is missing anything, in whole or in part, and hopefully give us some kind of direction. If that gives us no clear direction, we will wait until May to see two more specialists: pediatric neuro ophthalmologist and pediatric mitochondrial geneticist. With the new testing that will be done here, we will need to decide if we are going to run the gene test. This is up in the air because this only gives us limited information. The true test must come from the bone marrow, which means watching for his MCV (Mean Corpuscular Volume) to come up and trying another draw later.
Also, nothing showed up in the Leukemia testing and, as long as all of his chromosomes are there in whole, he's looking good on that end.
Right now the good news is - his iron level is finally within normal range! He has been on a quadrupled dose of iron since January (of course, we had his iron doubled since November). It's nice to see it finally taking effect. However, the bone marrow showed that even though he is absorbing enough for daily use (RBC), he is not able to replace it in the marrow for storage (MCV). Our hope is that, with continued iron supplement, this will be corrected - however, Dr. Kirkpatrick said that it takes a very long time to build up the storage, simply because he is using it as fast as he is taking it in.
So, that's where we are. I hope I answered all of the questions. Feel free to call, email, or comment if I didn't. Thank you all for praying for our dear little boy. We are so grateful for all of you. May God bless each of you!
Soli Deo Gloria!
How precious also are thy thoughts unto me, O God! How great is the sum of them! Psalm 139:17
