• Gracie Update

    Date: 2012.05.30 | Category: Grace | Tags:

    Today was her last dose of  i.v. chemo.  The doctors say she is in partial remission.  Her kidneys are doing much better, but her lupus is still not completely controlled.  Her complements are still not normal, although they are close, and she is anemic again.  They wanted her in remission before changing her to the oral chemo but decided that because her lupus was such a severe case that she will likely relapse and need cytoxan again.  You can only have so many doses in a lifetime so they want to save some for the next time.  She will most likely be on cellcept for 5 years after the date they declare her in remission. That seems daunting.  Sometimes it seems overwhelming.  I’m so very happy that there are treatments available for this.  If you read about this back in the 1950’s, the survival rate was 0.  I am so happy that there are treatments.  I am happy to have my little girl.   She is an unbelievably special girl in so many ways – her faith being one of the biggest ways.  I am blessed.

    I thought I’d share my Hats For Gracie post….. (For those of you who aren’t friends with me on Facebook.)

    This is a little embarrassing but I thought I’d share that life is all about perspective. Everything is how you look at it. You’d think I’d have it down pat by now, but I still need reminders every once and a while.  Yesterday we received another bill for Gracie’s care, another $1,982 bill to be exact and I complained. Mainly, I complained because you can’t tell what you’ve already paid or what it’s for. They just ask for the money and make it due in 3 weeks. I then realized Grace was in the room. Later I decided I should say something to her because I didn’t want her to feel bad about the bill. I told her that I wasn’t mad about the bill so she shouldn’t worry about anything. She told me “I think $2,000 is a small price to pay for my health and my life.” Truer words have never been spoken. Perspective. I think I’ll get me some. 🙂

    Previous Day’s Hats For Gracie post….

    Last night as I was tucking Gracie in she told me that she didn’t like having to wait until the sun went down to swim, that she was really kind of tired of medicine and she wasn’t happy that she would need another pulse of steroids on Wednesday with her chemo. She told me that she didn’t think lupus was very nice. She also said she understood that God is perfect and His plan is perfect so He must have some reason for all this so she would try her best to be happy. She said, “Sometimes happy takes work but it’s worth it.” Good advice from a 7 year old so I thought I’d share.