Thursday, October 29, 2009

Not So Good News

On Tuesday I noticed a bump on Amani's head. It was above his right ear. The little guy is ALWAYS bumping his head. We joke that he should wear a helmet! But something about the location and something in my gut was telling me it needed to be checked. I called UCSF and they wanted to see him right away. I quickly switched gears from what I had planned for the day, got Bret on board to watch the kids and set of for the city. When we got there they sent us right up to x-ray. I have spent enough time there that I feel like I can read the technicians pretty well. I have been right most of the time, knowing whether it is good or bad based on their manners, facial expressions, etc. I was feeling like it wasn't good news. I didn't want to get worked up though. It was very likely an injury. Right? We went back downstairs and had to sit in the waiting room before seeing the doctor. I felt like I was going to throw-up. When we were called in to see the oncologist, again I could tell. It wasn't good. She said she had bad news. It was hard to catch a breath. It is another lesion on his skull. It was able to grow during treatment. We are back to square one. We have to attack it again. They raised the dose a bit and we are back to the clinic for chemo every week and steroids three times a day. It is disheartening. We went back today to get started. He also had to have full body x-rays, again. His tiny body is really being out through the ringer. What will all this radiation exposure mean for him down the line? I had to hold him down. He cried and screamed. He is a great sport about everything, but doesn't like the scans or x-rays. He may also be getting tired of the whole scene. The nurses adore him and shower him with love and compliments. They think he is gorgeous. In a few days he'll be puffy and uncomfortable again. His treatments will keep going with no clear end in sight. I need to get back into a good spot about this. I feel so tired and discouraged. I'm sure it will all look a bit better tomorrow.

Saturday, October 24, 2009

When Odd Becomes Normal

I was thinking yesterday how quickly we adjust our lives when new things happen. For us, going to chemo, dealing with a grumpy steroid baby, administering medicine daily, etc. has all become our new normal. I can't even remember an adjustment phase. We just moved right into our new existence, and now it is our normal.

We have just been moving right along with what we have been told to do. Because LCH is so rare, I feel like I am blindly following the doctors at UCSF. There just isn't much information or choices in treatment. I've been feeling like we are in a bubble all alone with out a lot of outside input. Maybe that makes it easier.

The other night I was contacted out of the blue on FaceBook by a dad of an LCH child. I was connected with a network for families in our position. It was exciting and all of a sudden my world felt bigger. I spent a few hours exploring late into the night on blogs and websites, but that is a double edged sword. It allows you to connect with others in your position, hear hopeful stories, get encouragement and ask questions. It also clues you into the sad stories of toddlers passing away, hopelessness and despair.

I am torn between my bubble of ignorance and the bigger world.