We got all of Kellsey's test results back on Wednesday. See what happens when I vent about it?! ;) Unfortunately, everything was pretty backwards from what I expected.
Neurology called first and said that Kellsey's 24 hour EEG came back normal. In all honesty, this is not what I wanted to hear. I was sure she was having seizures with these episodes she was having. I had sent videos to a couple friends who have children with seizures and some of them were convinced as well. SO, since that is not the case, I asked, "What now?" They basically said they didn't know, but it could be some type of psychotic episode. So, I need to figure out where to go from here. They did prescribe her Clonidine to help her sleep and I picked that up today. Hopefully it will help.
Next I got an email from Endo. They said her TSH levels were down from 8.9 to 8.1 and she left it up to me on whether we start Kellsey on synthroid or not. I know nothing about thyroid so I said we could wait and just monitor her blood every 6 months. Now that I've talked to a few parents that either have thyroid issues themselves or have kids with thyroid issues, I'm thinking this is the wrong answer. :o/ SO, I'll be emailing her back today.
Lastly, we got a call from oncology. He confirmed that Kellsey is indeed anemic and to keep her on the iron supplement. Then he said because of her blood trends, he believes that she is in a pre-leukemic state. Because she has no blasts in her blood and her platelets are ok for right now, he recommends checking her blood every three months for now and when/if the time comes, he will do a bone marrow biopsy and we'll go from there.
Honestly, back in 2008 when we first fell in love with Kellsey's picture, the ONE thing that kept me dragging my feet on committing to her is "What if she gets Leukemia?". Frank assured me that the chances of that are very LOW and even if she DID, we've been there, done that and we could do it again. I'm sure we can. But I'm praying really, really hard that we don't actually have to. Cancer sucks.
Anyway, please just be praying for all these doctors in Kellsey's care. There are a lot of unknowns still, and I'm not really sure what the future holds... but we don't know that for any of us, do we? Please pray for wisdom and discernment for everyone involved in her care, including me. I am thankful for doctors who take charge and tell me what we're going to do next instead of asking me. Sometimes I just need a decision to be made, by the professionals who are trained to make it.
I'll keep you posted as I know more.