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.

Thursday, December 8, 2011

Medical update 12/8

I don't know what is it about chemo, but it seems that I can't concentrate to read and getting on the computer is a chore. I wish I could be part of a study about chemo brain, I think they would find that my IQ is decreasing. The chemo went ok on Monday except that it took 3 hours to get the 3 hour bad started due to someone not turning in the orders. I didn't have any reactions, I'm  just very tired but when I sleep it still seems like it's not enough. I had to go back to Emory on Wed and I thought I would be getting the new oral medication from the FDA, but Dr. Khoury said they were having problems getting it and it would hopefully be in next week. Between  riding to Emory, going to appointments, scheduling rides and sitters.... I'm wore out. They did decrease my steroid to every other day which is making me more tired but hopefully I can start losing some weight if I have the energy to move. The dermatologist thinks that the red patches is psoriasis and gave me some cream to try.... surprise. They said they can't do anything about the stretch marks and the PA thought they may be the worse she has ever seen. I also asked Dr. Khoury about who else he is treating with my disease and all is weird mutations with this chemo, pill, and booster shots. Ummmm..... I'm it, the only one. So I'm kinda feeling lonely here and that we are grasping at straws. Thank goodness for all my friends and family that are helping with rides and with Evalyn. I don't have too much to say right now and please excuse me for not returning many calls this week. I just don't have many words right now.
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  1. AnonymousDecember 10, 2011 at 4:48 PM

    It is not surprising you are the only one Emory has Heather. This is a very rare disease and you are blazing a new trail. The drug will come at the right time. I am glad the chemo went okay, considering it is chemo. For now just rest as best you can. Praying for you, your family, and your medical team. Coming off the steroids is good. It's okay you don't have many words I am glad to know you are hanging in there.

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