Still the Same

Many people have been asking how Sophie is doing since my last post. We are answering with "About the same," because in some ways she seems better, but then new things are coming up.

Her personality is the same. Still generally happy, but tires easily. Grandpa says it is because they play so hard during the days. Friday, Saturday and Sunday night she complained that her neck hurt. That was concerning. She pointed to the area at the top of her spine; even more concerning. If we question her, she will say it doesn't hurt. I think she can sense our anxiety.

She also has been sleeping fitfully again. Last night she wanted to get up for the day at 2:00am because "it hurts to sleep." She didn't remember saying that this morning.

Her new favorite thing is for me to "stretch her." This is a good thing because she needs that range of motion in her right arm and leg. I am really having to pull to flex her right foot and straighten her right fingers and thumb.

On the up side, Papa came last night and this afternoon brought Sophie a few flowers to plant outside...that has been her latest obsession..."when can we plant flowers?" He also played outside with her for a long time. I think he was more tired than Sophie! She can be pretty demanding! Grandpa also arrived and took the girls to the park with Marc while I went to the dentist; again. Sophie has been playing pretty well with Sarah. It is so cute to see. She does get protective about her stuff...in true big sister manner, but the other day they sat and played with Sophie's kitchen stuff for a while with no adults "helping." Sophie did a lot of walking at the park, and bending down while planting, so at least she is still moving.

She is wearing the glove at night for as long as we can get her to keep it on; it doesn't fit her perfectly, so we will ask at St. Jude about getting a new one that stays in place.

I want to thank all of you who are making comments to the blog. I always forget to mention that we find tremendous support in knowing people are praying for Sophie everyday.

We, of course, continue to be anxious about Thursday. We are trying to be realistic about what the MRI might show. One, the symptoms could be a result of all the radiation and prayers causing swelling because the tumor is dying off so fast. Two, the tumor is getting bigger and the radiation didn't work. Or three, there is a secondary tumor somewhere else. We are hoping, praying, and begging that option number one is behind all this.

When Sophie was first diagnosed we asked ourselves "Why?" over and over, but then accepted the burden we were asked to carry. Now we find ourselves again asking "Why?" "Why isn't she back to normal?" This time, we are trying to remain hopeful that the "back to normal - at least for the summer" that we were promised will still happen. It is hard to look around and realize that for most DIPG kids, radiation does give them back some good time. The guilt of putting Sophie through all of the radiation drama and the trip to St. Jude for possibly nothing is really wearing on me.

Again, we ask for your prayers and thank you for your support.