Actually, they call this Day Minus 3. I still don't understand why they count backwards, but the day she receives her stem cells is considered day 0. Anyway, here we are and she is doing great. Far better than I could have ever imagined. She vomited 3 times this morning but has not been sick since. She is still having some diahreah, but that is fairly under control right now.
Today she received Cyclophosphamide (a chemo drug) and Mesna. Mesna is the rescue drug that offsets the harmful effects of the Cyclo on her kidneys. She has to pee every 2 hours for the next 24 hours. Then, she receives this same combo of drugs again tomorrow. So, that's another 24 hours of peeing a lot. Gonna make for two long nights!
We are trying to keep Lucy out of the bed as much as possible. We don't want to regress too far in all the progress she has made with her walking and balance. We did a little PT...
Then we played Jenga....
We even painted on the windows!
When Ella came to visit we spent all our time in the playroom. Only two people are allowed in Lucy's room at a time, so luckily Lucy was up to visiting the awesome playroom. We stayed there for almost 2 hours! She sat up the whole time and was fully engaged in the activities. We painted, listened to the Jukebox and played Candyland (her favorite game!)
After my mom and Ella visited, Erik's parents came with Jack. This is how Lucy and Jack got to visit...
It broke my heart to see Lucy so sad that she could not hug and kiss her baby brother. He's just too young and we just can't risk exposing her unknowingly to any germs. When I finally got my hands on him I cried and my heart felt broken. Then after playing for about 1.5 hours my heart began to feel full again. I got to love on both of my children today and I am ever so grateful!
Did I mention that Jack is walking? Well, behind a push toy he is. He has fully decided that crawling is for the birds. Before I found a walker up here, he was pushing a chair around the lobby walking behind it. It was hilarious. Ella and Lucy both walked by 10 months, so it won't surprise me if he is too.
I started this post at 10:00 this morning. I'm just now finishing it at 7pm. That is how a typical day goes in the hospital. I also just realized that I have had nothing more than coffee, water and a diet coke today. Probably not the best decision, but again....time gets away from you. Day turns into night and night turns into day. I am still amazed at how well Lucy has done with this first round of chemo. God is so so good. He is answering the prayers of so many on Lucy's behalf.
Before I go for the night, I wanted to share a real quick story. I have seen a lady around the hospital since we started radiation. She is here alone with her young child. I am guessing 3 or 4 years old. Apparently her child is undergoing some form of transplant, as we are on the BMT (bone marrow transplant) floor together. We happened to be alone in the kitchen today and struck up a conversation. She is from Egypt and speaks very broken English. I am pretty sure what she knows is what she has learned since being in the States. It was a fast and tumultuous set of events that brought her here and she has no family with her. But as we began to talk so much was revealed about this woman and her life. We only spent ten minutes together, but I think those few minutes probably meant more to me that I can explain.
You see, she and her family are Christians in Egypt where they are heavily persecuted. When she told me she was a Christian she raised her hand to show me the inside of her wrist. There was a tiny tattoo of a cross. Apparently that is the mark that many Christians have. She said that you are either an Orthodox Catholic or Baptist. I thought that was interesting being that we are from the Bible belt and yes, I am Baptist.
She seemed so releaved to have met someone who would talk with her. I think she is very lonely and misses her family desperately. She has left another child back home with her husband. When I asked if there was other family to help, she said no. Either they don't have the time/resources or they are scared to leave their homes because of Christian persecution. The quality of medical care in her home town was laughable if not criminal. I was in shock at her story. It's a miracle in itself that her child is even alive right now.
Please keep my new friend in your prayers. I am not at liberty to mention her name or her child's, but I know God will know who you are praying for. I think I needed to be reminded how "good" I have it. I got to love on my babies for an hour today. She would give anything to hold her's for even a minute.