Well, we never heard back from the Job so we are trusting that it is God's will for Jonathan to stick about and take care of me and Evalyn some more. I'm defiantly not recovered enough be take care of Evalyn all day byself or even with a sitter for 4 hours.
On Friday, at Emory, Dr. Khoury said that I 'm doing great. I lowered the predizone (steroids) and the anti-rejection medication. Yesterday, I started to run a fever but not high enough to come in the hospital. I called alway to let them know and that I know it was the GVHD because the rash started coming back as soon as I lowered the medication. I don't really want to go all the way to Emory for IV antibiotics and steroids. I'm just so tired. So I'm trying to get that set up just in case. This morning I reached the magic number but only once, so I'm holding out.
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.
GVHD is awful and I just HATE it for you as well for me. I was so praying you would not have to deal with it. Running to that ER makes me crazy to think about for you. Drink lots of water and gatorade, you could be alittle dehydrated, some of my trips, that was the culprit, you know you can run temp if your are. And also everytime Dr. K changed my meds I ran a temp. So I am hoping yours goes away quickly as mine did. Your a trooper but sometimes I know you want to retire that title, Ha!!!!
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charmaine marlow
I hear ya! Yea, I'm just trying to chill out. I'm not up high enough to go in but I think I have it worked out that if need IV, I can stay in Athens and do it here. I'm so tired from the reduction of steroids, I think I got addicted!
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