Just when I was thinking I wouldn't be going to Emory till the end of Oct...
Please pray for me and my family right now as we are all pretty stressed about the unknown and the known. I didn't feel quite right and had some odd bruising going on so I had labs done in Athens today and sent to Emory. They did not come back normal and I'm not sure what that means at this point but I have to go to Emory tomorrow for labs and to see Dr. Khoury. I'm pretty scared to say the least. My white blood count is high and my platelets are very low. Is the cancer back? Is it because we lowered the anti- rejection meds? Unfortunally, my nurse, Stacie, is on maternity leave, starting 3 days ago, and will be for the next three month. Apparently her load is being assisted by 5 other nurses, so today I requested that I be assigned 1 nurse. I guess tomorrow I will have to assert my Emory VIP status :). Besides being afraid of what this means we have all kinds of issues with getting there, do I go alone?, who is going to what Evalyn. It would be that this would happen the week that all 3 grandma's are on vacation or just got back, best friend on Honeymoon, Pop and Dad busy with their own medical tests, and when Jonathan takes off work he doesn't get paid (not really important at this sec in my life). God is in control right? I guess this is where I can choose not to freak out and trust.
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.
Praying for you Heather. I came across your blog via google. I too have Leukemia, have had a transplant, and have since relapsed. Praying in Missouri...
ReplyDeleteAfter my appointment tomorrow and I figure out what is going on we could connect and talk. Thanks for your prayers.
ReplyDeleteYou're welcome, Heather. I'm praying for you now.
ReplyDeletePraying for you my friend it is not as it appears. Are you taking Gleevec or Sprycel? I am on Gleevec 400mg daily and I am a month behind you post transplant. Our other ALL Ph+ friend Katie also needs our prayers. She just had her 6 month BMB and got mixed results. One test says negative bcd/abl, but the biopsy says 3% leukemia cells detected. Today is her one year anniversary being diagnosed, she is only 28 with 2 children and today they are doing another biopsy. See attached link.
ReplyDeletehttp://katiefightsleukemia.blogspot.com/2011/09/ready-for-new-week.html?showComment=1317849723968#c6575029665393631011
We are all fighters and God will not leave us, we can trust him.
I just started Sprycel again, post transplant, I couldn't start earlier because of my GVHD. I will be praying for Katie. I'm getting and LP on
ReplyDeleteFriday, not sure why I have not got another BMB done yet.
Oh Heather, I am glad you are on the Sprycel because it can kill the leukemia cells that are mutated with the ph+ where the Gleevec just stops those cells from reproducing. The side effects are awful, I know. I did Sprycel for four months pre transplant and we decided to go with Gleevec post transplant because the side effects are less severe. My heart is with you and I pray tonight God wraps you in his arms and you can sleep sweetly in the shadow of His wings. You will triumph over this battle too, my warrior friend. In our weakness He will be strong. If you need a friend, just someone to listen I am here 24/7. Rest tonight.
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