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.

Tuesday, February 28, 2012

Deer in headlights

Forgot my guitar, had to sing alone.... for Barbara!

          Thank you so much for all of your prayers this week. The bone pain has not been as bad as last week or I'm just getting tougher.  Either way, I have been able to make dinner, get up two days in a row before Evalyn, wash clothes, caught someone when they fell (which was kinda cool since I'm the one people seem to keep catching) exercise, play with Evalyn, cleaned up Evalyn after an apparent water fight, visited with grandparents, and get organized with dates, and kinda cleaned the bathroom. Oh it's only Tues, not doing too bad. My sense of time/dates is whack.The list of things I have wanted to get done and either can't do or just didn't get to is a lot longer. I'm able to let it go now. Sometimes you make plans and they just don't work out, but that doesn't mean you don't plan anything.... I also received a special card from some of my former clients and their “momma”, it was so special. Makes me think about working again, but I know that taking care of me and Evalyn and sometimes my hubby is all i can do right now.  As soon as I’m not at Emory every week, I really want take Evalyn and us go see some of my “peeps”. For those that do not know, my former job for almost 5 years was a support coordinator for a wonderful company named Creative Consulting. I was responsible for monitoring services given by the state to adults with developmental disabilities. I miss it so much, I miss my people. Creative Consulting was there to let me continue to work from home as long as possible and Jonathan was able to graduate school. They continue to be a support to me by visiting, collecting money, checking on me, and just loving me. I don’t know what will come of my “employment” opportunities but like to think they would always have me back. I think about going back to school and doing something with Behavior Analsis to be able to write behavior support plans…. Or maybe I will write a book, or maybe by some miracle I can have another child and just get in with a home school group and renew my teaching lincence. The possibilities are endless. Right now, just try to sell some stuff on ebay, got some bids right now! Another possibilies I like to think about is having my own booth at a store to sell my art, vintage clothing I find, and antiques I find. I also love photography and could make cards and such.  I want to learn to sew but for some reason I just can’t read that book, I need personal lessons. I also love to play the guitar and sing and would love to do birthday parties and other events. Goodness. 
                      I go to Emory again tomorrow and I have still not been able to get the medication that I need for the CMV virus. Please pray that the levels are low and I don't have to stay. My skin is maybe half better but still has a ways to go. I had to put olive oil on my scalp today like I have cradle cap or something. Evalyn saw my legs for the first time yesterday and had some lotion on her hands and she rubbed some on me, she is such a sweetie. My eyes are a big issue right now with my 3 part regime 2x a day. They are really watering today, can't hardly see. They are all red and ugly. My bottom lashes fell out again.
                  My Granny and I had a nice talk again and she mentioned about planning a trip to Jekyll island because she has not been there is so long and if she is going to be old and sick she might as well do what she wants. I told her I know exactly how she feels and that Jonathan and I would drive. Granny said she would just throw a rag in a suitcase, we'd leave, and get what we needed there. Gosh I love her. Apparently my Dad  caught a pretty big fish there one day. We are going to plan it for real.  Now, now, don't anyone get uppity, I'd take this lady anywhere she wants to go. A cancer patient, a toddler, probably a dog named Wallace, and two very independent people in their 80's sounds like a great plan. Oh, then there is Jonathan, he's the most normal and will be in control of everything important. Other are invited of course but you might have to take on some responsibilities such as making sure I take my medication and wiping Evalyn's butt.  So we are going to plan and hope for the best. The BEST will be seeing and smelling the beach and seeing her happy to be there. Today the 3 of us just laid in the best together and took a cat nap. Best use of my time today. 
Meeting Barbara at her two year BMT party. She has been a good support  and inspiration for me. 


Evalyn had a blast!

All dressed up for the party!


At the library, she kept waving and getting a little closer, Then she finally gave her high five.

Finger painting...She didn't like her hands being dirty.


Pic I found of my Dad and her at the park a few weeks ago.


                                      Oh Thin Mints, how I love you. I'm going to have to stock up on them.

Ezekiel 34:11-15

New International Version (NIV)
 11 “‘For this is what the Sovereign LORD says: I myself will search for my sheep and look after them. 12 As a shepherd looks after his scattered flock when he is with them, so will I look after my sheep. I will rescue them from all the places where they were scattered on a day of clouds and darkness. 13 I will bring them out from the nations and gather them from the countries, and I will bring them into their own land. I will pasture them on the mountains of Israel, in the ravines and in all the settlements in the land. 14 I will tend them in a good pasture, and the mountain heights of Israel will be their grazing land. There they will lie down in good grazing land, and there they will feed in a rich pasture on the mountains of Israel. 15 I myself will tend my sheep and have them lie down, declares the Sovereign LORD.

4 comments:

  1. Had a great time with Evalyn tonight! She is such a happy child and you have done a great job raising her despite all you have been going through. I pray God allows you to dance at her wedding,love you and thanks for showing this computer illiterate how to post comments! Love and prayers, Grandma Judy

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  2. Heather, i have just found ur blog... through Facebook. i think it takes alot of courage to post ur life on a blog. i will keep reading. when all this started. i signed up to be a match. i hoping i could help someone....

    you have a very beautiful family.
    have a great day.... i will continue to follow.

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  3. I love to hear that people have signed up. We find out soon if my family member is a match for someone in CA! So exciting.

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