The decision of when to transplant seems to be making itself for us. Based off of how Emma's counts are doing, that she's in transfusion ranges, and that things keep going downhill, Emma needs a transplant, and she needs it soon.
We'll be moving forward with things when we get it all lined up with the donor (because there will be one, right?!), as well as insurance, and getting everyone organized who will help with the other kids.
We'll update more once we get more information and some idea as to when we can start doing this.
Since telling Emma about the reality of her disease, death has become a somewhat common discussion in our house. It's done pretty low-key, kept pretty casual, with her being the one to bring it up. She doesn't seem terribly concerned by it.
Yesterday I got a little bit of a surprise. I got a "if I die" request from Emma. Want to know what she wants? hehe. I'll just share the conversation:
"Mom, if I die, will you make a sad video of me and put it on youtube?"
I paused what a was doing for a second and thought for a quick bit to figure out how I felt about that exactly. Part of me was feeling that emotional crushing feeling of hearing my baby girl tell me her "if I die" request, while the other part of me was finding her request to be absolutely hilarious.
I think I restrained myself from letting out a giggle (can't remember for sure)...and from crying...and I said, "You want a sad video made?"
"Yes, with music. Really sad music."
"And you want it on youtube?"
"Yes. I want it to be sad" (as though it would be possible to make it NOT sad!)
"Okay, sure I'll do that. I'll make it as sad as I possibly can."
"Thanks." She smiled big. Then she added, "But I don't think I'm going to die. I think I'll be just fine."
I agreed, as usual.
haha! It still makes me giggle.
(Emma has always been interested in youtube videos like that. She emotionally connects deeply with the families and their loss. So, her request came from that and was a very innocent, childlike request, in case it sounded differently in written word vs hearing it in person.)
So, guys, you better hope she pulls through her bone marrow transplant or else be prepared for the saddest video EVER. I might need some music recommendations. Maybe "Baby Mine" from "Dumbo". That's the saddest song in existence and why I will never watch Dumbo again.
I'm not really planning this in advance...just teasing and wanted to share! The things I never thought about having a conversation over.
I heard Emma saying her personal prayers before bed, and she said, "And please bless me to surviiiiiiiive my transplant." She said it in a sing song type of voice that didn't at all match the seriousness of what she was asking for. It's hard to explain without being able to have you hear me imitate it. But it made me giggle.
The things I never thought to experience with all of this!
Emma has a penpal in England (that I'm a total loser at helping her write to her). She's such a sweet little girl, named Grace. Grace emailed and asked Emma how she was feeling about her transplant. Emma said:
"I am feeling happy about the transplant. I think I will get better from the transplant and can't wait to do it. I am not scared. I feel like I should do a bone marrow transplant. It's what I think Jesus said to me. It's how I feel inside. I know I might die from a bone marrow transplant, but I'm not scared because of how I feel about Jesus."
I want to have faith like her.