Even the bad days are Good!

First, let me say that I could not have mad it through the last few months without my friends and family. It's been a long journey, but I thank God every night for friends like you and for His faith in me. Faith, that I will never live up to or be able to comprehend. I know He believes in my strength to get through this even more than I could possibly believe in Him.... It blows my mind if you want to know the truth. Thanks again for your friendship and encouragement!

Today, Sophie had a fever, headache and her rash is spreading and Aiden was teething. It was a super fun day! wooo hooo! There's some sarcasm in there somewhere, but seriously, though it was a long day, I wouldn't trade even these days where both kids are cranky and the house work doesn't get done until the hours after the kids go to sleep for anything in the entire world! When my son was born, he and I almost didn't survive and the fact that he and I are both here and we get to share in what the future holds for all of us is a gift. An amazing gift, that still brings tears to my eyes!

People often ask me how I have the faith to go on even when my little family has such high mountains to climb and this is what I say... God saw me through the darkest time of my life. And, if He can see me through that He will see us through this no matter what the outcome. Do I have the strongest faith? no. I get weak and doubt Him just like most people do. I don't know why I'm rambling on, maybe it's because I want to make sure I remember that He's there, because I'm scared. But I think this fear is a natural part of this whole process.

So, today, I read a few stories about people I have recently met on the histiocytosis facebook page. These people are amazing survivors! I read a friend of mine's blog today whose daughter has gone through chemo in the last three years for LCH and she said that her daughter's symptoms were strikingly similar to Sophie's. In fact, they even look alike. I have started praying for this little girl, in addition to my own. I pray that God will see them both through whatever the future holds, that they will both be surrounded with His love and the love of their families and friends, and that one day they will meet and be able to talk about their experience.

Another patient shared about her experience talking about the fear and how she wish this disease hadn't taken her time away from her husband and three children. I was deeply touched by her story because she dug deep to tell about the fear and trepidation she had experienced as she entered into treatment and how she still lives with multiple tumors in her body still to this day. I saw some insight into what my daughter might experience if she ever goes through chemo in the future.

The parents who have lost children are so amazing as well. They talk about the hope and lessons that their children gave them. They talk about the support of their friends and family and doctors along the way. Most of them have lost very young children, though many of them have angels who have gone to heaven at a later age, all much... too soon! It's also so incredible how when a child passes away, they put little symbols by their name like. "^^name^^" It's like little angels wings that have sprung out from either side of their name. It just brings tears to my eyes because when you see those little symbols, you just know...

As we go down this road of Langerhans Cell Histiocytosis (LCH), I still keep thinking of the kids at the cancer center with their little masks and hats and pray... Oh God, I pray tonight that my Sophie doesn't have to go through it too. If she does, we will obviously get through it, with God's help... but fear is creeping in... It just is... Well, the doctor and my friends  have warned me that I should be prepared for a roller coaster with LCH... that this disease can go into a "spontaneous remission" but that nothing is 100% and that they definitely want to have the rash biopsied on tomorrow. I pray that it goes well.

As far as the bright side, I am absolutely overwhelmed by the support of our friends and family. Sophie wanted to put all the cards in her mini blinds of her window of her room. It made me cry tears of joy when we had them all up.

Handmade cards from her classmates and cards sent from family members and churches across the state. We are so very blessed to have such amazing friends and family.

Aiden decided to try on Sophie's Easter "Hat" as he called it. I just thought this was too precious not to share!

Gee Mom, you really want to take a picture of me when I have a fever?

Sophie looked and felt pretty miserable today. She even took a nap this afternoon after lunch, which she hasn't done since she was about two! She complained of a headache and itchiness all day...

I just know that this is going to be okay. Some days are a little darker than others. Tomorrow IS another day!!! And, God's love is new every morning.

Lamentations 3:22
Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The Lord is my portion; therefore I will wait for him."

Goodnight friends, J