One of my main goals this week was to only go to Emory once this week, and so far it looks like I may meet that goal. Whoa... dream big! (line from the movie Juno) Anyway, it that goal and other rickamaroo (don't know how to spell that) caused a 10 hour day at Emory. Marlin, one of Jonathan's college roommates, was nice enough to get up at 4:30 am yesterday and take me to Emory and my father in law, Frank, spend 4 hours with me waiting on the medication and drove me all the way back to Athens. I have one more day of IV chemo next Tuesday and then we will start the Donar Lymphocite Infusion in Jan. I received the oral chemo, ponatinib, from the FDA yesterday and didn't realize how much Dr. Khoury and his staff had to do to get me on the medication that I need.
At this point there is no effective treatment for the type of mutation that I have. This medication has been through trials at several places but is not approved yet by the FDA. The research coordinator said that getting me this medication was the same amount of work as opening a whole need trial. The ethics group at Emory is meeting about me tomorrow and could say no to me taking the medication at all. The FDA has approved me taking it though. It seems that most people have responded well to the medication. Side effect could be anything so just pray that I don't have any!
Great news, I'm off the steroids! Not meaning that something couldn't happen where I have to get back on them, but Gosh I hope not! I wan't to get off all this medication and lose some weight! I'm not feeling too well today. I can't seem to sleep, I have a cough, and my body is starting to hurt from the chemo. If it wasn't for Evalyn I would probably not move.
Lets talk about life and death. Jonathan and I talk about it quite a bit in small amounts such as me saying "if something happens to me, I want you to find Evalyn a new Mommy" and we talk about my wishes and what life would look like without me. "Don't think that way" you may say, but hey, this is real life and maybe people don't talk about it enough and then the family is stuck with making all the decisions. I'm not scared of dying. I'm scared of hurting the people that love me. I'm scared of suffering. As I rocked Evalyn before her nap today, I started crying and praying that God would spare my life so I could be this wonderful little girls mommy. It's sad to think about and it's a reality that most people take for granted, that we don't know when our time will be up. I don't know what lies ahead if this next step doesn't work for me. I haven't asked that question yet. As my neighbor Eva says.... " We are just gonna live until we die."
True, Eva, True.
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.
Tuesday, December 20, 2011
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This is good news Heather. Good bye steroids! Praying constantly trusting this will somehow be a blessing in disguise. i pray that the stem cells engraft quickly, your numbers stay stable and safe and all the cells that live and grow be happy and well in your body. I pray this new drug stops the BCR/ABL mutation (Philadelphia +) and that you only have to be on it a short time. I pray your body heals well from the conditioning treatment (chemo) and NO mucusitis! Also I pray God protects your healthy cells as much as possible and you have sweet restful sleep ) I Love the video clips of your miracle baby Evalyn. You have to talk about all the possibilities and your wishes when you go, it is the responsible thing to do, None of us have any guarantees of tomorrow, we are just really aware of that right now. Although I believe you will live on happily and healed to see your great grandchildren live, laugh, grow and rejoice in their creator, savior, and friend. Keep on keeping on.
ReplyDeleteThank you Jill, you too!
ReplyDeleteHeather, you are an amazing woman...
ReplyDeleteBy the way, the Thriller video is so hilarious! We were laughing so hard! Chris loved Jonathan in the background:)
ReplyDeleteI love you, cousin.
ReplyDeleteI hope you are doing okay, I love you,cousin.
ReplyDelete