We have officially made our decision to do a bone marrow transplant. It was an unanimous decision, Emma included. I've had an overwhelmingly strong answer to prayers about it. I feel very confident that our decision is the right one. I might share more about all that at a later time...but I have about 10 minutes before dinner is ready and can't do it right now!
We've had a lot of difficult, tender, memorable, life changing discussions with Emma that I wanted to share as well. I'm not sure there's much else that she doesn't know about her illness anymore. She has completely amazed us with her views and her strength and her faith. (copy/pasted from our FB pages)
Today our topic was on babies, and if she'd ever be able to have any. She asked me about it. Not a topic I was excited to have to tell her the reality about.
The truth is...
If she doesn't have a transplant, she won't live long enough to have a baby.
Even if she did live long enough to have a baby, w/out a transplant, many girls with FA enter menopause very, very young and can't have children. (Then the few who can, most have very high risk pregnancies.)
But Emma's not going to be one of those that will be able to make it to adulthood without a transplant. And, the awful truth with a bone marrow transplant is that it will sterilize her.
So, almost no matter how you look at it, the odds aren't in her favor that she'll ever be able to have a baby.
I explained that to her, in more simple, age appropriate terms (are there age appropriate terms for that?). Then I talked about how special adoption is...since it really is an amazing, beautiful thing.
Her response to me was, "Mom, look. I think my ears are wiggling."
Not the response I was expecting. Haha! So, for a while, she randomly practiced her new found skill of wiggling her ears via her mind powers. I can't do it, so I don't know how she does it. She can also jiggle her eyes back and forth really fast.
But I wondered if she understood what I'd said or not. I thought I explained it well. She had asked a few questions & watched me intently (maybe she was just concentrating on wiggling her ears, though). Due to her hearing impairment, her comprehension level is closer to about 7-8 yrs old in many ways, combined with the emotions of a ten year old.
Then tonight, right before bed, she said, "I wonder if I'll ever be able to have a baby." So, we talked about it again. Turns out she had listened earlier, but she understands things the best when she hears them several times. I imagine we'll be talking about it again.
It breaks my heart, though. So many hard things for her to learn lately. I don't want her to ask anything else! Not for a while. I don't want her to be sad. It's harder emotionally, than I realized it would be, to explain all these things to her (and I thought it would be hard). But, I do try to remain open and easy to talk to...even if I wish we never had to have some of these talks.
Tonight, she asked Tyler how babies are made. Haha. These other conversations, about FA, give a perspective that makes that near-future conversation a little easier than it might have been before.
WHY DO FA ADULTS DIE?
Today she randomly asked me why all the FA grown-ups die. I think she knew the answer, but she wanted to know if it was really true.
One of the things we decided from the beginning was to be honest with her as she asks questions...but I didn't realize how hard that would be...and I was really hoping she would take longer to ask this one question.
Anyway, so I asked her if she really wanted to know the answer, while I was thinking to myself whether or not I really should tell her. She said that she did want to know, and so I felt like I should honor that. I'm sure people will judge it for being right or wrong, but I feel like it's right.
So, I explained to her that they always end up developing cancer and dying at some point from that. Her eyes got really wide, and she gave her little smile that I'm starting to recognize as her I'm-smiling-but-not-really-smiling smile. Her eyes got all teary eyed. She didn't understand what cancer was, but she knew it was something people died from.
I felt like I needed to explain why a transplant was still important - that it could give her a lot more time here with us before that happens than it would if she didn't do it. I explained that there are doctors and scientists working to try to figure out how to stop the cancer, so there's some hope they'll figure something out by the time she's older. I told her that there are some that have lived to be as old as daddy and even older (and you know that is REALLY old...at least by her expression, you'd think so!).
I'm sure we'll talk about it again, but I have to say how amazed I am at our baby girl for handling news like this like she does. I only know what it's like as a mother to find out this about my baby. I don't know what it is like for her emotionally to find out the information about herself. Now I feel like crying all night. It's hard knowing that she knows that now, but I feel convinced it's the right thing to do - to be honest when she asks or else she'll learn she can't trust us. We can't keep it from her forever...and it was obvious she had put it together and needed to understand it better. But still, I hate that she ever has to know!
Anyway, so that was the highlight of our day.
Okay, dinner is finished, so I'm going to run. There's a bit more to update on, which I will do soon.
We are waiting to hear if Emma has a bone marrow match...and I think I'm going to die from anxiety.