Lucy with her Child Life Specialist, Ashley
Well, we all have survived day 2. Today was Cyclophosphomide and Mezna, which means we have started 48 hours of continuous peeing. It will make for a long night, but knowing we are so close to the end makes it more bearable. We had an interesting talk with the doc today. I asked him why the decision was made to go forward with the full dose of Chemo when there was an issue raised about Lucy's ANC being so low. Basically he said that it just came down to the fact that with her high risk cancer she needed all she could get. Wow! That hurt.
Not that we didn't know it and haven't lived it for months, but just hearing it again from a doctor was a painful reminder. After her recent good scans you find the ability to put the worst behind you and look forward to what is to come. The positive part of the conversation was Dr. S's reminder that the reason these MB (medulloblastoma) kids are blasted so hard with high dose chemo 4 cycles in a row is that it works. We are clinging to that tonight.
Lucy has been pretty sick today. Off and on, really. I can tell her body is tired and worn down from 4 cycles of this crap. Tomorrow when they take down her last bag of chemo I think I will cry. Maybe I'll do a happy dance. Maybe I'll do both. You might even hear me shouting "Praise God." Friday after she gets her cells the nurses and other staff on the floor throw her a "No Mo Chemo" party. I think that will be really neat for her.
On a side note, I may not be able to walk tomorrow. I started Day 1 of the Couch to 5k program today. The St. Jude campus served as my training facility. Let me just tell you, if you are going to start running after 7 months of being completely sedentary, a hospital is the best place to start. I really thought I might need oxygen when I was done. It was so bad that when I came back up to the floor and the nurse came to let me in she thought I was in distress. I reassured her I was only trying to fit back into my pre-baby, pre-cancer clothes and that the only way I was going to do it was to just go for it. No easing into anything. Just hit the pavement and start running.
I also got to love on Ella and Jack today. Oh how I miss them so!
Please pray that tomorrow will be a good day for Lucy. It's hard seeing her so sick. You'd think I'd have grown accustomed to it by now, but it never gets easier.
Those no more chemo parties are THE BEST! I still remember my nephew's like it was yesterday and it was 6 years ago! Celebrate BIG momma, ya'll deserve it!
ReplyDeletePraying and praying for Lucy!! Cancer be gone, in the powerful name of Jesus Christ, amen.
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I have been one of those random followers of your blog and I can't even think of how I heard of your situation or blog. During a moment with God, I felt led to pray for someone else in need and you immediately came to mind. Sometimes my 5 year old daughter will be looking at the screen when I'm reading a post and asking who you are. We've talked about praying for those in need even when you may not even know them. I love your honesty of the events/circumstances that you have been through and know that sometimes the blog world can be a cruel place to put yourself out there. I am so happy that the road before you in winding down and you have a new course in life--renewed attitude, renewed spirit, and renewed family. May God continue to surround your family with love and grace in only the way that He can. Blessings and Peace. Brynn
ReplyDeleteI've loved your blog, not to due your troubles, but due to how honest you've been! My baby sister survived a brain tumor at the age of 9 and is now a college graduate and a nurse herself! My sister and I were older than Ella when it happened, and though not a mother, I feel your aches for your other children! Believe me, both my sister and I are better people for what both my (baby) sister and my parents when through!
ReplyDeletePS...I'm on my 6th week of Couch 2 5k and have NEVER been a runner! If you get a good pair of running shoes and a great play list you'll be surprised in yourself!
Praying for your sweet girl!!!
ReplyDeletePraying for your family and sweet little Lucy!
ReplyDeleteKate, you are such a super brave mommy. I am so proud of you for having the courage to use this blog as a personal journal to the world! I do not have a child who is sick like Lucy, but I know that you are ministering to countless moms and dads who are watching their babies suffer, and no one can understand them like you. I thank you for being there for those parents. I also thank you for reminding me just how good life is. Lucy is stronger than most of us adults, and I stand on faith with my family daily for her healing. I read your entries on a regular basis looking for that miracle because I believe that Jesus will do it! I know He loves you, and I know that He calls you "Faithful". Lucy will remain in our prayers, and our hearts until we see all cancer gone, and she is out laughing and running for all to see the goodness of God!
ReplyDeleteBe blessed,
Charity
Atoka, TN