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.

Wednesday, January 19, 2011

Jan 19th I left the house twice in one day, once with real clothes on

Hello!
            The title of this blog may not seem like much to normal people, but leaving the house at all is an accomplishment, twice is unheard of. Once I had on jeans. Yesterday, I had to get my blood checked and ended up having to go by the hospital to get cross-typed to get blood. My hemoglobin was only 6.8, but I was feeling better. Again, I don't know myself anymore, because how I feel is relative to how bad I have felt. They said it wouldn't be ready till today, so I went back home. Last night, I decided that although my counts were low I would go to small group. I figured that I'm going to the hospital twice in two days, so that was more risky then going to fellowship with my brother and sisters in Christ. I realized on the way to small group, that this was the first time since October, Jonathan, Evalyn, and I have all been out together. Well, in Nov. they both came up to Emory but I was already there so it doesn't count.  I can't go many places and when Evalyn goes somewhere, it's usually with Jonathan. We are so paranoid about me getting sick or even Jonathan or Evalyn getting sick, and we are so busy with doc appointment, we stay at home most of the time so that we can be together. See if Jonathan or Evalyn gets sick, we have to be separated.
Oddly, I wanted to take pictures of our outing but then didn't get a pic of the three of us.





                     This was very haunting to me to realize that we have not been out together and drives the point home even more that we are not normal. Evalyn does great meeting new people and with everyone that sits with here but I realized last night that she is not getting exposed to different environments let alone other children. I would love to start going to Momma/baby group or something but I'd have to wear a mask the whole time and I'm not really supposed to be around kids that have recently had live vaccines, which I would not know. It's natural for kids to get sick and build up immunity but what if Evalyn got sick and I couldn't see her or take care of her while Jonathan had class, that wouldn't work, not sure what we would do??? Hopefully we will have some nice warm days soon and at least go to the park or something. I think that I'm going to contact Full Bloom, an early parenting center in Athens, to see if they would be willing to start a group for children/parents that are immune defficant. There has to be people out there like us.
                     FYI, here is the link that that video that I was talking about where Evalyn is laughing.
                   At small group last night, we celebrated Mirka's birthday. Jill made dinner and we had prayer time. This women is so wonderful. She loves the Lord with all her heart and she can't help but pour out that love on others. Sean is truly blessed to have her as a wife and we are blessed to have her in our life. Mirka, we love you and loved the food that you sent home to us. Thank you for all that you do! We had a great time last night and Evalyn and Brook laid down together for a little while, they even held hands :). We love all of you!
                  Please continue to pray that one or both of the potential matches will be a match for me. I'm kinda getting on pins and needles about it. Don't tell me that if you were in my position, you wouldn't be able to stop yourself from asking yourself, "What if they say I don't have a match?", " What if I don't make it?" No, you can't say that you wouldn't because you would. I'm shedding some tears as I am writing this because the thought is overwhelming. I don't want to die and not see my little girl grow up. I'm scared of God's plan, this is scary stuff. Not that I don't have hope and faith because I do.... it's the peace area that my human side really shows through. I was reading yesterday in proverbs and the Lord told me again that this is in his hands.


The mind of man plans his way,
But the LORD directs his steps. Proverbs 16.1

4 comments:

  1. I love you!

    I think the same thing too often sweetie... but I'm hoping and praying every day that there will soon be a match.

    If there's not, we'll just have to freeze you and put you in the outside freezer until they find a match. ..

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  2. I am glad that you got to meet up with your small group; I know how much they mean to you.

    I can also understand trying to balance the need to keep everybody well and together with being able to give Evalyn different experiences. The sick thing is true; Emilie never got a cold until after she started going to Kindermusik! There definitely should be a group for parents/babies who are immunodeficient; you need interaction, too.

    I don't think that anybody can say how they would feel in your situation. How can you not? And I think of it often myself, realizing how very blessed I am to have good health and be able to take care of Emilie. The things we take for granted...

    You are always in my thoughts and I am always sending much love out to you.

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  3. I'm really not sure how I found your blog...I'm always lookingt though as my daughter is also a cancer fighter. She was diagnosed with AML at age 3 and underwent a BMT about a month before her 4th birthday. She's now 5 and we're trying to re-adapt to the 'real' world.

    That being said, I will be thinking of you and witing to hear they have found the perfect match for you. I am so sorry you have to go thru this and have to worry but completely, completely understand.

    hugs,
    gina
    www.caringbridge.org/visit/taylorjones

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  4. Baby, you need to live life to the fullest. It is great that you got out of the house and I am so excited that you are coming home. I can't imagine what it would feel like to think that you might not be there for your child to grow up. I do know what it feels like to see your child sick and it breaks my heart. But it is ok to cry and be upset about it, but it is not okay to think that it is the end. There is a song by George Strait called "The Breath You Take", and I heard it on the way home Sunday from Athens, and I cried like a baby. It is so true. Listen to it esp. about his grandchild being born. When Evalyn was born, she looked up as if to say, "Well here I am", so I know God brought her hear for a reason. I LOVE you and it will be okay.
    Mom

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