WELCOME

Hello,
Welcome to my Blog! Yes, I have been in the fight of my life against Leukemia, insomnia, depression, side effects of medications, molting skin, pooping my pants and this list goes on.... however, I still love my life, and that's what this blog is about Real Life. I hope to meet others who trails have brought them closer to the Lord and molded them for the next step in God's will. In January 2011 , my family, physician, and Be the Match was featured on a Fox 5 news story about bone marrow donors and transplants. In March, I was interviewed on Atlanta and Company along with Be the Match. I was chosen to sing the national anthem at the Be the Match Run last year and will also be doing it this year, along with some other songs. My team, no thanks to me, raised over $4,000 and raised more than any other team! Please join my team this year or consider donating here at the Run those Stem cells out ! Team I was also chosen for a patient advocacy panel for the international council meeting at Be the Match in MN in November. How exciting!! I ended up not being able to attend due to the relapse. I had hoped I could help raise awareness about how easy it is to sign up to be a donor and how many people need your help! Please go to bethematch.org and sign up! I was able to have my bone marrow (same as stem cell) transplant at the end of March thanks to a 22 year old donor oversees that I hope to meet her one day. As I came up on my 6th month mark and continued to add more normal activities to our lives, I relapsed, meaning that the that the cancer had mutated and the leukemia came back. I spent 2 more weeks at Emory and some other nights here and there and now I'm on a drug from the FDA. I have a compassion waiver so I am able to get it. I have to take it day by day sometimes hour by hour. Time keeps moving and my little girl is growing up. I'm lucky that I'm getting to see it. I continue to praise God for his wonderful blessings he has shown us including my wonderful husband Jonathan, baby girl Evalyn Rose, supportive family and friend, great medical care, new readers, and the chance to make a big difference, even if that means being a Lab Rat.
God Bless You!

Please read, comment, enjoy, learn, grow, LOVE LIFE.

Most Recently I have started a booth at a local consignment store with handmade jewelry from friends, crafts, and my own art from recycled materials. It is called DAY by DAY. God was very clear with me starting this. Please look over to the right of blog and click on Day by Day to see some pictures. I'm just getting started but I am taking orders from people that I know. You will be able to personalize items, etc. I just haven't decided how I will be selling them via internet yet. But for now, the jewelry is at A Weekend A'fair in Athens, GA and will hopefully be at some stores downtown soon.

Monday, November 14, 2011

down down down the steroid ladder


              I just wanted to let everyone know that I’m still kicking. Friday my labs were ok so I didn’t have to stay and was able to ride back with my mom to Cartersville where me, Evalyn, and Wallace spent the weekend. Jonathan got a weekend off and went to the game, it's his birthday week! He will be 32 tomorrow! I was, and am, pretty tired and weak due the such a fast decrease in the prednisone (at 20mg right now!) and didn’t get on the computer or hardly talk on the phone the whole weekend. My parents are going to have to get an elevator with all those stairs.  I was able to spend some time with my mom, dad, and sister. We were missing Daniel though. Jennifer took me by a little antique store that I really like and of course I found the perfect end table for my guest bedroom and or course it was too much and I even haggled with them with my mask on and managed 5 dollars off. Blah  Evalyn had so much fun playing and dancing at my parents house. She likes football games, which is fine, when she is a little older I’m sending her with her daddy and I will have Sat to myself. She is super cute in that bulldog outfit and will get very upset if you try to take it off.
             Medical stuff…. Well…. Lets just say my life is being held in the balance…. Kinda feels like God just has me dangling by a few fingers and not covered in his hand. Woooo, isn’t this fun? Surprises at every  corner…. Come get your popcorn. Yes… I am crazy.  I still have a lot of hoops to jump, who am I kidding, a lot of hoops to crawl through to get on this clinical trail. My LP came back negative, meaning  the cancer has not spread to my spine, praise the lord, thank you for all your prayers. Next step is getting off these steroids without having Graft verses host disease (stomach issues and rashes are what I have had before)… that’s enough to pray about for now. Otherwise, I'm just very very tired and not sure how I'm going to make it through this week. I told Jonathan I needed a maid, a gardener, a secretary, a sitter, and a personal driver. What are you doing at 5 am on Friday.... feel like going to Emory? Rides and sitters needed! 
                   

1 comment:

  1. SO glad that LP came back negative. Now those headaches can just go away! It seems like a convoluted road but it will open up soon. XOXO

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