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, January 28, 2011

Jan 28th Perfect Match!


Proverbs 3:5-6 
 5 Trust in the LORD with all your heart
   and lean not on your own understanding;
6 in all your ways submit to him,
   and he will make your paths straight.

                        I have to be honest, I have been dreading this day for weeks…. What is it about us humans that we have to worry so much. I was petrified that they may tell me that today that I didn’t have a match. I do trust him with my heart, it’s my head, the understanding, I have problems with.  If you have been reading the blog  for a while, God had given me a dream about the bone marrow transplant and that I came through ok. Now, why I couldn’t just trust 100%, I don’t know. Oh right, because I’m not perfect, give yourselves a break Heather (I’m writing to myself again). God’s still working on me, to make me what I ought to be….  This past week I have not been able to write very much. Sometimes I can only take care of myself, Evalyn, and keep up with work to keep my insurance, oh and get paid. So again, no news is good news…. But today I have WONDERFUL news.
"Well, I guess some like it hot. I personally prefer classical music"

                   Today, my friend and mother of a person I had on my caseload, Pat, took me down to Emory today to meet my mom, while Jonathan went to school and Grandma Judy watched Evalyn. It was hard to leave her because she has been running a fever and we don’t really know what is wrong. We got to Emory fine, the lab went smooth…. I saw Dr. Khoury almost on time.... got a room on 6E…. no spinal headache from the LP…  Dr. Khoury, I’m so lucky to have him, received a big award and grant yesterday, click here…….got two new wigs…. it was all smooth sailing. FYI, spinal fluid is clear like water, I had them show it to me.  At the doctor’s appointment, I was sitting in the room for a little bit just praying and praying, then 4 doctors and nurses walked in. I was about to choke on my heart!!!! Then Dr. Khoury said that they have 3 potential matches for me, 2 partial (90%) and 1 perfect match! I started crying my eyes out and mom shed a few also! He said that we may even be able to do the BMT sooner than we thought. Emory still have to get the samples and run their own tests but what is important is that I have a chance to beat this! It is still going to be a long road to recovery but I don’t really want to think about the details of that right now, I’ll tell you later. Praise the Lord!!!! My mom was so sweet to stay with me today and then set up my room for me while I was at the LP. 
Sweet girl had a fever and was still smiling this morning before I left. 

                     I will be at Emory for the next few days getting chemo and another LP. I hope to go home a little early since I got one of the LP’s today. I also hope I can talk someone into coming to visit me and bring me some food to eat ;) Please pray that I do not get mouth sores, sick, and that the treatment goes as planned. You can also pray for Evalyn to get better, I won’t be able to be around her if she is sick when I get back.  Jonathan is really getting into school now and will have test starting soon. This is going to be crazy next 4 months, but I guess if we have made it through the last 3, then God will bring us through.
                  At small group last Tuesday, I really broke down. I just felt so tired of it all, weak, and down hearted. I can’t do everything I need or want to do for sure and it’s very frustrating. God is amazing in how he helps me get from one day to the next. I start each day seeking and praying for strength to make it through and get the things done that he feels is most important, not me. That means that the closet is still not organized, the kitchen is not arranged how I want it, and I don’t have the energy to cook for our family. Praise the Lord that he has put so many people in our live to support us with babysitting, prayers, food, and even financial support. We are truly blessed. I do believe that God’s plan is perfect and that if it is his will for me to survive he is going to make me stronger and all of you believe in him more! I also know that Be the Match is going to play a huge part in my life. Besides the Fox news story, there is a donor drive at Athens Tech on Feb 14th, a fundraiser in Atlanta called Laugh out Loud, and a newspaper article at the local paper in Cartersville. I just got off the phone with someone who is going to have a fundraiser and a possible drive in April at the Classic City Roller Girls bout they will be having in April. I have also heard of a church that may be doing a drive. God has already used this situation to get so many people to sign up.  How many other lives will be saved because of this suffering that I have to go through? I may never know, well, I will in heaven.   
Check back soon as I will be posting information about fundraisers and donor drives.  
My Red Betty Page wig. 

Love,
Heather

1 comment:

  1. i saw your story in the local paper.....what an amazing story. Your baby is just gorgeous and your strength is inspiring. We are local so we will keep an eye on your progress. Good luck with the upcoming treatments!!! God bless you and your family.

    ReplyDelete