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.

Friday, May 6, 2011

Friday Emory appt. CMV go away

I think that this was Wed. It was a long Emory day, I came home a crashed  in bed. Our friend, and one of our sitters (not sick!!!)  After dinner, I didn't move, I just laid on the soft cushions Grandma Judy nake fore us and Michele got her ready for bed, fed her and put her to bed. It was great to see her. 

This week has been a crazy world wind of trying to start back work, a dealth, a surprise trip to Emory. Just a quick note to update those of you that are reading. My CMV levels are still going up so the virus is spreading. It's scary stuff, but there is a 90% success rate that the meds should work. I've made it this far!  Luckily, I do not have to start IV meds at first, they now have a pill. Seems like that that could have been updated in the BMT handbook that they gave to me 3 weeks ago so that I wasn't freaking out so much! I was suppose to start the medication yesterday but we are having trouble getting it due to the rarity of it, lack of communication between Emory, insurance companies, and pharmacy ( I try to keep everyone together, really I do). I don't feel very well and really need to get the medication. I was so upset at one point yesterday because Emory said that if we couldn't get it, I would have to come in Sat for IV, twice, each day, until it gets taken care of. Well I'm not one for holidays but when you are as isolated as I am, not getting to do something even small and really upset you because it feels so good to just be part of something besides cancer, medication  sickness, etc, etc. Like, I have driven a couple of times, and that felt great! I still not driving with Evalyn in the car though. Supposedly, I'm suppose to get overnighted the medication in the morning to my home, however, if it doesn't come in time, I have two choices.... go get the IV..... or pay our of pocket for a dose at some pharmacy the hospital found. My insurance wouldn't pay because it has already been charged with the shipment that is suppose to come in. Talk about stress. I just cried at the kitchen table. See, my family is all coming up this weekend. My mom of course has been here, but I haven't seen my Dad in forever, my sister, Jen and Dan are coming too. We are going to have dinner, go to a park,and play some games. I haven't had family time in so long. In the hospital I couldn't even talk to them because I didn't have a voice.
Now, maybe I  can write about the great things that have happened this week.....
Mom and I brought the color out for spring for out trip to Emory on Friday. It is great that it is getting  warmer so I can dress in the clothes I like... Notice the pink pants mom has on... very stylist. 
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