Hi Everyone,
Sorry to keep you hanging for a couple of days. Believe me, if had huge good or terrible news you would know as soon as I could type. So the good news is that I'm cleared for hip replacement, which sounds like horrible news, but compared to the pain I'm having now, it has to get better. Little Evalyn will say, every time I come from the doctor, "are you better yet mommy, can you crawl in my puppy house or take a bike rid.?" Breaks my heart. [
The weird news is that I'm apparently the longest living person after a BMT, with my particular leukemia, that relapsed, with this much GVHD, and all the surgeries etc, that Dr. Khoury has seen. I hope that makes me a light to others and leads research in the right direction.
The not so good news is that my CMV levels are high again and I don't know what that means for the short term or long term.The other issues is medical bills that are really piling up. As most of you know, I got all my teeth taken out due to all the treatment I've had. We're hoping my medical insurance will help pay for some of the dental work.
I should be having my surgery the week of April 8th and will need so much more assistance than we've had. We are thankful to have such a good support system of family and friends. Thank you for your prayers and generosity. Please keep it up!
Thanks!
Love, Heather
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.
http://www.foxnews.com/health/2013/03/21/immune-system-therapy-shows-promise-in-adults-with-leukemia/
ReplyDeleteHave you read about this? Cured 5 people--one guy in 8 days
Hi Heather,
ReplyDeleteMy name is Ashley and my little sister Araina was diagnosed with Ph+ ALL in October 2012. She had her transplant at the beginning of February 2013. We found out on Wednesday that they detected Leukemia cells in her blood and bone marrow and said that she has relapsed. I had inboxed Katie Waggoner on facebook and was asking if she has had a relapse since transplant and she said you were the only one she knew that has :( I am happy that I found someone who is living with this disease but very sad that you have to go through this. I started reading some of your blogs but there are quite a few :) It's bed time but I wanted to say thank you for sharing your story with me. You are an inspiration and give me hope!
Ashley, please feel free to contact me with any questions. I've learned a lot and know there are a lot of posts. Your sister is also welcome to contact me. My email is heather.cape@yahoo.com and I can give you my phone number also. I too have felt alone sometimes in this. Please email me and so that I can help. I'm very interested in where and by whom she is being treated. If you all accept my help as her treatment goes on, I may be able to offer advice that will save some frustration, time, money, and mistakes that have learned the hard way.Thank you for your comment.
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