MISSION: POSSIBLE?

Hmmm, dare I say it? We are right now cautiously optimistic. These are the two words I am feeling right now. It's been two weeks since Bailey's last blood transfusion, so I took her yesterday to get blood work done to see what her CBC (Complete Blood Count) and Reticulocyte (new red blood cells) Count is, so we could see how well she is maintaining her hemaglobin levels, and anticipate whether we need to move her next transfusion up or back or keep it where it is, presently scheduled for next Thursday morning.

Anyways, the results were sent to her pediatrician since she wrote the script for the blood work, so when I talked to her today, she said her hemaglobin level was at 8.9 (which is below normal--11 to 15--but still okay for her since she is used to being anemic), probably around where they expected it to be, not sure. But then she said Bailey's reticulocyte count was 2.4....wait, I said to her...that is high, right? I nearly cried from the possibility, okay, so I did cry from the possibility...that her body could be starting to make its own red blood cells. She seemed to be a little hopeful too and said she'd fax the results over to Dr. Strouse. So I got off the phone with him a little while ago. It's not as cut and dry as her levels going from 0.5 to 2.4, because it depends on how much blood is in her body. When she is really anemic, the retoculocyte # can be higher since overall, there is less blood, and the #s may be lower when there is more blood since the transfusions give her packed red blood cells and not many of them are "new" (reticulocytes). But the fact that her # was 2.4 and she is not very anemic (relatively speaking, ha ha, in comparison to her lowest point), is a very good thing. Dr. Strouse says he typically doesn't get excited or tell his patients/parents to get excited based on the results of one lab test, so I said I would just be cautiously optimistic. He said he would too. The fact that the #s are higher meant that...drum roll please...her body may be starting to make its own red blood cells. This is the exact thing we have been praying for and I am so hopeful, but trying to just be careful not to get my hopes up too much, trying to find the balance. We have been grasping the idea of her new diagnosis and accepting it and don't want false hope to make coping with it all any harder. I don't know what it would mean if her body did start making its own red blood cells now...would it mean that she doesn't have DBA and that it might just be TEC (Transient Erythroblastopenia of Childhood), a temporary form of anemia that is like DBA but goes away? Or would it mean that she does have DBA and this is some sort of remission??? I don't know. Or, it all could just mean that her body is producing some but not enough red blood cells and we continue on this DBA journey??? Hmmm, can you tell the wheels in my brain are turning?

So keep praying....pray that her body IS making its own red blood cells! She'll go next Wednesday afternoon for blood work in preparation for her next transfusion which would be the following day (the 6th). If the #s are good, Dr. Strouse said might be able to wait longer to be transfused, so we'll see. I was not expecting this, but I welcome with open arms the possibility of what could be.

So now in addition to MISSION: POSSIBLE-Making red blood cells...I just pray that God would allow me to understand the purpose in all of it. I have just been thinking so much and trying to process what it means faith-wise. I know God CAN heal her & keep/allow her to be healthy, but I struggle with WILL he? And of course I want to pray that he can heal her and believe whole-heartedly that he will, but then I feel like I am not submitting to his will, but expecting the result that I want. So then I pray for his will, but what I really want is Bailey to be healthy. I go round and round on this faith merry-go-round. I was talking to a friend this week saying that I know the Lord's word is "lamp unto my feet and a light unto my path" (Psalm 119:105)...but sometimes I wish for a floodlight, or at least a flashlight to see what's up ahead. Guess it is all about walking by faith, not by sight.

Thank you all again for your thoughts and prayers. We feel so loved and supported and we look forward for when Bailey is old enough to see the fellowship she has around her. In the meantime, we have a crawling little sweet thing who just got another tooth. Life is good.