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, April 12, 2012

Going to Emory today... please pray

Hi!
I'm going to Emory today to see my new bone doctor and then I will be seeing Dr. Khoury and really need your prayers. First, that that they don't admit my butt, although, I will be prepared and that what they have found already can be stopped in it's tracks so that that I don't have to have any surgeries in the near future, or ever. We have only had MRI's of my knees and they are not looking so good. Other points of pain are in my lower back and hips where they found osteopenia last year. My vitamin D levels have been very low, 9, out of 40, so my body has not been able to absorb calcium and at the same time the chemo has been taking it out. I also have pain in my wrists, hands, feet, elbows, and ankles. I would like to be able to get back to my usually exercise routine because it made me feel so much better. Also, I start the study drug again today at a lower dose. We are still experimenting about really happened last week with the stomach sickness. We ruled out C diff and CMV. It could still be GVHD or the study drug. Or it could have been a very bad stomach bug that is going around, causing me to be a hermit. Please pray that I tolerate the study drug with no rashes or stomach issues or any other side effect. I need this medication. We also get the biopopsies back today for the colon scan, please pray they are all negative.

This girl has some moves.....
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2 comments:

  1. DanApril 12, 2012 at 9:38 AM

    You bet, Heather. I was at Emory yesterday for a blood draw and peeked around for you just in case...looks like we missed each other by a day. You are taking on this journey with so much courage; your strength is an inspiration! I will pray for negative scans, and it will be good to get you back on Ponatinib, even at a lower dose.

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  2. Lily Dawn April 12, 2012 at 8:55 PM

    Praying, praying, praying Heather. I showed the boys the pics you sent in the mail and they were glad to get to see who we are praying for each night- Love you guys!!

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