My plan didn't work! Emily's counts did NOT go up. :( Her ANC is at 800 and her WBC is at 1800. Not great but at least they aren't lower:)
We're not going to let it get us down. It is just another climb upward on the roller coaster right?
The good news is that she maintained her weight at 18.2 kilograms which means she is eating something.
Dr. Boyer said, "I am beginning to think her appetite struggles don't have anything to do with the transplant."
This struck Matt and I as very funny since we have been trying to tell them that all the SCID patients we are in contact with, have the same issue!
The plan is the same, we will just wait and see if her counts go up when she is off the Cyclosporin. If not, they will go in and take a look at her bone marrow to see what is going on.
I asked what would happen if they just stayed this way and the Dr. Boyer said it wouldn't be a successful transplant. He said that usually they can tell what's going on when they test the bone marrow. Oh yea, and that we may not really know for another YEAR!!!
I also asked about going back to church. His reply was, "It is too early for that now, maybe at the end of summer...well, no, August has a lot of virus's going around...maybe early fall...oh, but not in the winter!"????
Don't you love it? Don't worry, I didn't tell him about all the places I have been taking her, including church this last Sunday to hear Jacqueline give a talk! She walked in with her mask but took it off during the meeting...I know, I am bad! I guess we will keep to the Relief Society room where we sit listening through the intercom. It has been really good to get her used to going back to church...she actually didn't complain last Sunday when she had to get ready! (BIG IMPROVEMENT!)
So, there's your update, not much different but at least things aren't any worse!
As we left Primary's Emily through a penny in the wish pond saying that she was wishing for summer to come very soon! I have a feeling this wish will come true :)
7 comments:
I pray so hard for Emily, I just know her counts are going to go up I know it. She looks so good, that has to mean something. We all just have to pray hard and stay positive. Love you
She does look good! We pray for her ALWAYS!
How frustrating! You are much more patient than me. I would be freaking out at the fact that it takes so long to get answers. I think it is great you are letting her go places. She needs that. Your family is truly amazing. We will keep praying. We need to get Kylie and Jackie together this summer. Hang in there!
All moms can imagine and feel some of how frusterating the unknowns must be. Sweet sister, more then the summer wish will come true.
You are my hero.
We can't wait to spend time with you.
Sounds like a good thing to Fast for in June!
Grrrrrrrrr..... It will happen. She is just to spunky to not get better. We'll keep praying!
I'm sorry. We are thinking of you guys and praying for you. Don't you hate being patient? You'd think it would come easily by now but it's never easy! Good luck.
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