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!
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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.
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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.
I still can't imagine your journey this year. We sometimes stay way to sheltered in our tiny lives. Around us everyday are people in situations we just couldn't imagine. Your bravery and faith are so wonderful and inspiring. Praying for Lucy!
ReplyDeleteI have your button on my blog, if you will allow I will write a post and ask for more prayer warriors. Just let me know. Lori Happy moments, Praise God ~ Difficult moments, Seek God ~ Quiet moments, Worship God ~ Painful Moments, Trust God ~~~ Every Moment, Thank God
ReplyDeleteSo glad to hear that Lucy is doing well again today! Praise You LORD!
ReplyDeleteContinuing to pray for her and your sweet family.
I will also pray for this Egyptian lady and her child.
I think it is so amazing how God will show us someone who's need is more than our own. When I find myself having a pity party, God usually shows me someone worse off than me and instead of feeling guilty over my situation He releases me into prayer for them and thankfulness for what I have.
God is so very good.
Praying and praying,
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I'm pretty sure she didn't say "catholic", but rather "Coptic". Copts traditionally have tattoos on their wrists. I am an Orthodox Christian myself and have a deep love for the Copts - they go through so much persecution in Eqypt... so much that is very little reported on in the States. I am so glad you talked to her and can be a friend to her. I pray that both of your little ones, and all your families, are comforted by God's grace as you go through these trials.
ReplyDeleteSo much to see God's hand in and through you today. Amazing strength through Lucy today. Precious visit. Love your mom's new haircut. She and Ella were so cute in their matching polos! So wish we could have brought you some food....I brought just what you ordered for Monday! You remain in our thoughts and in our prayers. What a story about your new friend from Egypt. I will be including her in my prayers also.
ReplyDeleteYou amaze me with your strength and attitude. I love hearing the "truth" in your words. I can "hear" your frustrations, your joy and most of all the love you have for your children and God. I have been praying for Lucy and your family from Denver and will continue to lift all of you up to our Lord and Savior. Sounds like God placed Ms. Egypt in your life at just the right time and place. Praying that each of you can bring comfort and joy to each other during this very stressful time. Enjoy the new friendship!
ReplyDeleteKate, I have been following your blog and praying endlessly for your family. If you know of anything I can help you or the others you mentioned with please send a list of needs and I'll see what I can do. In Christ, Nina Smith
ReplyDeleteIt is so wonderful that you took the time to visit with that lady today. I have personally been to Egypt and met so many wonderful people. The Christian people there are so inspiring. She is indeed blessed to be here getting the best care for her child. The fact that she has the resources to get here is astounding. I am so glad Lucy is doing so well. God bless.
ReplyDeleteGlad it is going well so far! Still remembering you all in my prayers! If you think of it, see if Shane Cross is one of your pharmacists. He is a dear friend of ours, is a Christian, and knows of your story. Know that there are many there at St. Jude that are praying for you all!!
ReplyDeleteKate, I know the woman you speak of. I am relieved that you were able to talk to her. I never had the chance to really get to know her or her child (I will also refrain from using their names), but saw them often at the Ronald McDonald House. Very sweet momma and child. I am thankful you were able to reach out to her, and I will continue to lift them up in prayer as we have been, but know with this new knowledge, my prayers for them will include their safety as well!!!
ReplyDeleteI continue to check on you daily and pray for you while I'm reading your blog...today brought me to tears for all that little Lucy and other children have to go through. Something I do not understand but pray that God will hold each and everyone in the palm of his hand. God be with you each day to give you strength and peace.
ReplyDeletei came across your blog by accident today. it was recommended to me by my google reader. i am so glad that is was. your strength and faith are a true inspiration. my prayers are with lucy and your family as you continue on this journey.
ReplyDeleteI am close with a woman from Egypt and she has a group of Egyptian friends that support each other here in Memphis. She said she would be willing to talk with this woman to maybe give her some support that she can better relate to or help her with whatever she needs. She also has a friend that works at St. Jude whom she said could check on this lady if she would like. My friend's name is Noha Hady and her # is 334-444-6790. Noha said she wouldn't mind this lady giving her a call. I will be praying for the both of y'all.
ReplyDeleteKate, just found your blog from over at Lori's. I too am a Christian and only find peace and comfort through my Lord Jesus Christ. My heart is touched by reading your post. I've never walked in the steps you are now taking, I pray that HE will wrap his arms around you even at this very moment and you can sense HIS presence with you & Lucy. Your burden has touched my heart and I will continue to lift you, Lucy and your precious family to the Lord. Praying for healing! I would love to share this pray concern with my journal readers. IN HIM our only HOPE, Karen
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