We are slowly getting settled here and I have to tell you I am desperately homesick for the 7th floor at Le Bonheur. I cried off and on yesterday just thinking about the "family" that we left behind. I am totally out of my comfort zone here. Going from appointment to appointment today, I roamed the halls of this big campus feeling confused, alone, angry and frustrated. I wanted so badly to be here but now that I am I realize there is no turning back. No escape until the long journey is over. I'm still mad that Lucy has cancer. It does not make any sense and I can promise you that after 22 days its not any easier to say or accept. I should be at home running the last load of dishes right now, sitting down to watch a Tivo'd show and then slipping into bed for a restful night's sleep before I get the girls up for school. No one or no thing could have prepared me for where I am now.
Lucy has been riding a roller coaster of emotions as well. For many days I've been telling her that once we left Le Bonheur we would be going somewhere new. I never told her it was a hospital. Well, when it was time to transport yesterday Lucy was in the best mood. She even wanted to open birthday presents. Her room had been filled with gifts since her birthday and she refused to open even one!
Her mood totally reverted back to angry once she realized that the "new place" was just another hospital. She was so mad. It broke my heart into a million pieces. She screamed off and on all night, at one point even having a true psychosis meltdown. It scared both Erik and I really badly. The docs are weening her off of the Dex (steroids)---THANK GOODNESS!!!! It is horrible watching her turn into a monster that I don't even recognize. But she does still say I love you from time to time and that makes it all worth while.
We received our schedule for the next few days. It is jammed packed with appointments. Everything from social work to clergy to radiology to dentist. St. Jude does not leave a stone unturned and let me tell you that they are a well-oiled machine. Everyone is in constant communication and all the employees have bought into the notion that they are here for the sole purpose of making children's lives easier.
Today we had a CT scan and radiation simulation under anesthesia to prepare for radiation therapy hopefully starting next Tuesday. If all goes well, Lucy will begin her journey to healing early next week. While she was having her procedure Erik and I met with Dr. K who is the head of the radiology department. Once again we had to hear the pros, cons and potential side effects of radiation. The short of if is that Lucy does not have an option. If she wants to beat this thing she will have to endure 6 weeks of RT treatments. There are potential side effects of radiation and we ask that you pray specifically for mild effects and protection for her body. After her Sim, she had dental Xrays and a dental consult visit.
Erik's parents brought Ella and Jack to visit this afternoon and Lucy's spirits soared. I did not get pics of Ella today because I could not find my camera until after she left with my mom to head back for church. I did capture some sweet moments between Lucy and Jack though. She was devastated when he left. This was just one more reminder that we have got to get Lucy home so that she can heal with her family. It is more evident to me now than it ever was before.
Please pray that we will all begin to slowly move from mourning Lucy's diagnosis to kicking it's butt! With God all things are possible and we know He is on our side. St. Jude built its walls with a foundation of hope. My Jesus is my foundation of hope. On Christ the Solid Rock I stand all over ground is sinking sand. Everyday Lucy, Erik and I will be walking hand in hand with God on some mighty firm ground bathed in prayer by the thousands of people world wide who have heeded God's calling to pray for us. Thank you all for being obedient and answering the call.
A little girl's life will never be the same and neither will her parent's. Last night and tonight I sat opening 2 huge bags of mail from friends and strangers alike, all praying for Lucy. I mean, seriously! I sat with my mouth opened reading letter after letter and opening will wishes and gifts for Lucy--my sweet child that most of you have never met. I have a renewed confidence that there are a lot of great Christians out there. I don't know why you have, but I appreciate you letting my family into your life. What a great honor it is to be walking this road with so many.