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.

Sunday, November 20, 2011

Medical Update and Birthdays!

               This week has been crazy…. I don’t remember Monday, except I had a headache. In the middle of the night I woke up with a full blown migraine that would have normally been an ER visit but we have a toddler and ER’s are very dirty. I toughed it out till morning, got a sitter to get Evalyn, went to the doctor and waited quite a while to get some IV meds.  Im so sorry for people that have them a lot. I went to the doctor with sunglasses and a mask on, I looked like the uni- bomber. My Dad, Bruce, drove me and had to sit in the darker room with me because the lights were killing me and I was seeing purple and Fay got the easy job of watching Evalyn J.  So Tuesday was pretty much shot.  Wed and Thurs…. I still think the migraine meds were in my system, I cancelled most activities and remember some weird dreams. By the time Thursday and Friday came I was exhausted. Again a short day at Emory turn into a long one with an EKG, x ray, extra lab work, and a bone  marrow biopsy, which is still a pain in my rear.  These are part of the tests I have to pass to get on the clinical trial I need. My father in law and I, thank goodness, missed rushed hour.  Then my parents arrive with their lover bird beagles and my Dad helped drill some holes and hang some things, and my Mom assisted with Evalyn which started to get sick. Jonathan and Dad went to the football game and I messed around with paint and probably some other things I’m not supposed to do, it was too painful to sit on my bottom.
              Now that it is Sunday… I can’t believe that this week is Thanksgiving. If you know me you know that I’m not fond of the holidays because everyone gets so bent out of shape for so many reasons, drink and drive more, more sickness due to time of year etc. Stress is at an all time high for me with starting this new medication. I’m phase 1 of the trial, I asked Dr. Khoury what my number is, how they will identify me in the report, and he said that I don’t have one. First time I didn’t believe him, they just haven’t assigned me one yet. I’m trying not to do anything that could mess up this trial, mostly trying not to get sick. So I’m staying close to home and asking everyone that is sick to stay home…please! You can help by praying that I’m able to pass all the tests I need to get on the trial, that side effects are not present, that it works, and of course that I get to live.  Generally, I don’t have a lot of energy and having a lot of hot flashes!


Happy Birthday!
            Three of my 30 favorite people had birthdays this week. Today is my mother in laws, Carols, birthday. She is a part of the code red team.  My husband turned 32 on Tuesday.. Luckily, I was feeling a lot better by the time he got home from work so we were able to go out to eat, and use a coupon and gift card! Woo hoo!  Evalyn turned 16 months  and let me tell you, she is really starting to assert her independence, test the boundaries, etc with me and her Dad. She didn’t try and eat the crayons the first time she experienced coloring so that was good.  Kathryn, one of my beautiful cousins, turned 16 this week! She is incredibly talented and I can’t wait to see one of her plays. I’m trying to talk her into going to UGA. I need to add some pics to this blog... but that would require more energy then I have right now. 
             

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