Breaking news...

Tonight I got a call from one of the two doctors working on Sophie's case. He was in Hawaii at a conference, and though I was starting to wonder whether the doctors really understood just how urgent this all was to US, he called... from Hawaii... just to talk about her case. He, and the other doctor working on her case, both believe that the biopsy of her skin rash on Monday could be important. He said that if the rash is positive, it will mean chemo because that will prove, beyond a shadow of a doubt, that the disease has gone multi systemic. He also warned us not to let our guard down because though the disease has a high remission rate, it isn't something that usually goes away without some form of treatment. Sophie had the excision of the place on her skull but it is still there, though there weren't any other areas of concern on the radiology reports, tonight the doctor did tell me that he and his associate had not met to discuss her case in detail because he has been out of the continental US and the other physician has been over at the hospital now seeing the much sicker patients. Though I am frustrated, I do understand. He also told me that we should try to find someone to do the biopsy Monday because if it is multi systemic, then chemo will need to begin soon. I thanked him for his call and told him that I would talk to him soon. He said to email or call again if there were further developments on Monday, and that if something major developed over the weekend, of course, go to the ER.

Well, as I reflect on this conversation, though this was not something I wanted to hear, but tonight, Sophie's rash is on both legs and all over her back. There are also some spots on her back that look like bruising, which is typical of the disorder when I was looking through the literature on LCH tonight. I will put the cream that the dermatologist gave us on the spots that are especially irritating and pray to God for the best tonight. I am hopeful that this is nothing more than her body working through this, and that the rash is something totally unrelated. And, that her headache and fatigue are just the anxiety that she has about the whole thing.

I am trying to lift her spirits as well as I know how. Tonight I made her a healthy dinner of a little lean grilled steak, some steamed veggies, a salad and a small baked potato. For dessert she had a homemade fruit and yogurt parfait. I think she had seven servings of fruits and veggies tonight and 1 of protein. I'm making a real effort to feed her the right foods so she can have the strength and vitamins in her system to get through whatever life has to throw at her. I also have been making sure we get some exercise, though she doesn't always feel like it. It sure paid off for me too when my mom bought her some new clothes today as an early birthday present.

Pretty girl in pink flowers.

She looks so grown up here!

 Well tonight as we ate our supper, we spread a blanket out (Aiden was tucked in already) and we had a picnic on the living room floor. We turned on one of our favorite movies, The Princess Bride. We laughed and laughed as the old preacher said, "Mawwege... Tha dweem wiffin a dweem..." Hilarious. Sophie said that in order to watch this movie you have to be old enough to understand that some of the words are bad words so you won't repeat them. She's a hoot... and a good girl.

I hate that I've become oddly obsessed with every bump and bruise and scrape on my daughter's skin. I am afraid of what the future holds. And, though I know that God is going to be right there with us the entire time, he can't take ALL the pain away. I have tried to give it all to Him, but even though it's not as bad as it would be without Him, I do still hurt. I'm doing better now that I finally got a good nights sleep. And, I pray that I will get another good nights sleep tonight. Although I am saddened by the expanding rash and what it could mean, I am glad Sophie decided to go ahead and come home. Three services and waking up at 5am when you don't feel good because you have to follow your dad around his job isn't easy. And, since she's not feeling quite up to par, I totally understand her wanting to go ahead and come home. I know she will miss seeing her friends in Sugar Land, but I am sure she needs her rest. This could be an interesting week ahead...

Goodnight friends! J