Pretty Normal, Really

I think the one thing that even I am surprised about is really how normal most days are for us. I mean, I guess I should say according to our new normal. We definitely stay home more now as we're trying to keep Rylee free of any bugs, infections, fevers or anything else compromising to her immune system and aside from all the new medication and precautions we have to be careful about, most of our days at home are fairly normal.

I do laundry, cook, clean, the kids play, etc. Rylee certainly has her good days and bad days- at times she doesn't feel well at all. We mostly have to carry her around or hold her at moments like that. But I continue to be amazed at how she's able to bounce back a few days after treatment. It's a great blessing to still see her being her- happy, curious and cute! She's really started saying more words in these past few weeks & I love to hear her talk.

On Monday, Rylee started gaining enough strength to walk around again. Again, what a blessing! It really helps her when she's able to be independent. She's been walking since before 10 months, so she was pretty frustrated when she couldn't get around on her own.

Yesterday was a really good, normal day for her. I got her on video for any of you who have never met her in person, but I can't figure out how to post a video on here. Let me know if you know. I just wanted to show the here and now. I've noticed that when family or neighbors stop by or see her for the first time since she was diagnosed, everyone seems a little shocked at how "normal" she looks. We'll get comments like, "She still has her hair" or "She looks pretty much exactly the same" or "She looks really good- does she feel good?" Again, sometimes we're shocked about this too because we really didn't and don't know what to expect (we're only 2 weeks in)-it really is a day to day thing. Some days are certainly better than others in terms of how she feels. Today she was much less active than yesterday.

We have noticed side effects of the chemo kicking in little by little. Her hair has started to thin, she's gaining weight and eating way more than usual due to the steroids she's on and the steroids also make her a little temperamental and hard to please at times. After treatments, especially after the bone marrow and spinal punctures, she's in a lot more pain and it will take a few days for her to feel up to doing stuff again. I'm not sure what to expect as we get further into treatment. I don't know if it stays the same or gets harder or easier on their bodies. I guess we'll just follow Rhianna's, I mean Jordan Sparks advice and take it one step at a time. (I just heard it announced on the radio today.)

Well, tomorrow's our big day- heading to Salt Lake for another treatment. We got the bone marrow results back & unfortunately, she has to get another bone marrow test tomorrow. She is at an 11.4% blast level and she needed to be 5% or lower to not get it. We're just praying that she'll get to 5% or below by Day 28 (Oct. 30)- if not, she'll move into a higher risk category and have to start more intense treatments. Just pray that her current treatments will be effective. I don't think we could possibly handle any more "intense."