Ice Cube...

The steroids are as bad as what people have told us. She has gained four pounds since last week which is a lot for a three year old kid. She also is having significant mood swings. One moment she will be completely fine, the next she is totally out of control. She wakes at night at least every hour, sometimes having to go to the bathroom, sometimes wetting the bed, other times trembling and calling out. Until today, she has taken 4 mg per day, but will now begin taking 8 mg per day, which she will gradually be weaned off of during the course of the radiation. While the steroids have no effect on the actual tumor, they are supposed to reduce the swelling and minimize some of the symptoms. As for her symptoms, she is not using her right hand or arm much at all. It just kind of hangs there. Today I asked her to grab some ketchup packets, and she was hardly able to hold onto one. She walks with an obvious limp and the facial muscle and eye weakness are noticeable. And as far as the mood swings go, she is even clingier than ever. She is literally attached to me all day, and has even spent the last few mornings sitting on a towel on the bathroom floor while I shower. Lately she doesn’t want to ride in the wagon back and forth to the hospital, and insists I carry her...it’s only a 5 minute walk, but carrying a 40 pound load on my front is not easy. Pray that I may have the strength and patience to continue to give all this nonstop attention that she requires, without completely depleting all my own energy.

Dr Gajjar reviewed Sophie’s MRI with us on Thursday. The tumor appears to have grown very little since last week, so that is a bit of good news. We showed Sophie the pictures, and tried to explain it and why she is here. Ed said he used the analogy that the tumor is an ice cube and the doctors are going to try and melt the ice cube. It made perfect sense to me so we used the same analogy. We showed Sophie the scan of her head and pointed out the large oval shaped mass and said it was like an ice cube and that the ice cube was making her throw up and walk “wobbly.” We went on to say that the doctors at St. Jude are going to try and melt the ice cube. She didn’t say much...actually she didn’t say anything. But later that night while drifting off to sleep, she rolled over and said “We have to show Aunt Sarah those pictures, she is not going to believe that I have an ice cube in my head! The simple honesty of a child is what saddens me most about this situation. Poor Sophie can’t even begin to comprehend the severity of the cancer. Maybe that is a good thing...