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.

Saturday, March 23, 2013

Medical Update 3/23

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!


Love, Heather                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  

Tuesday, March 5, 2013

Medical update 3/5/13 ghost or oven mitt

I knew something was wrong last week. It seemed too good to be true that almost everyone I knew was sick in some kind of way and visiting new doctors offices away provides new germs. Add in my mystery low count, Dr. Khoury going out of town, and not being able to do anything that require moving and holding something. (Try making lunch and getting it safely to the table, thank you Evalyn for not dropping that plate that day) Then the fever, which I don't normally get very many because I run low, luckily we didn't have to go to Emory till Sat morning and Evalyn was already spending then night with Grandma and Poppa Frank. I got there and they decided to admit me and since it was Sat in the clinic I got a room pretty quick on 7E, not may favorite because home is 8E, but close enough. Last time I was here in I was on 5 where I playfully said the "crazy people are." It's just a normal hospital floor where people don't stay very long and there just happens to be a lot of crazy people there. There were people screaming in the hall and they had a lock on the fridge. I was wishing I had a lock on the door.
I used to have the best veins in the south, now sometimes they have to stick me over and over again. I don't get outside much so I play the cloud game with my bruises... what do you say a waving ghost or a oven mitt?

My lovely hip that has to be replaced. It can't hurt much worse than it does.

I thought I would spare you a pic of my toothless mouth right now.

So I've been getting pumped full of antibiotics because an infection could kill me and given tons of fluids, not good cause getting to the bathroom on time is very difficult. I've been in less pain of course because they have the good stuff here. Nah, it's really because there is noting to do so I'm not moving as much.My lung Xray was negative  labs are about the same. The oral surgeon same my gums are healing well and have no infection and..... that he feels I made the right decision to get them all out, my port wound is healing well and not infected. I still have this mystery bump on my left arm that looks very angry. Best thing, is I have not had a fever again and they must have a new chef because the food is a lot better. I was able to eat Meatloaf and Mac and cheese. The schedule had to be tweeked and Evalyn got a little sick but never had a fever. It goes to show that I really don't need to around anyone that is sick even though most people just say oh it's just allergies. Yes, I'm still planning on going on my 3 day vacation next week to the hostel in the forest. I haven't been in almost a year. Don't worry my brother is going to.He'll make sure I don't use my cane on  the pool table. Yes so what, I might die. Guess what, I might die, or your may die. No sense in the healthy having all the fun.

Going home tomorrow. I miss it so much. The infection... probably something spinning off the cold, yep tested positive for the rhinovirus.... the common cold. Which antibiotics don't do anything for, but for me it could have stopped a spring up cause of pneumonia.

Thanks for your prayers, pray as I go home and try to be patient, wife, and mom.

Love to you and my best friend Jim Banks, thats also in the hospital right now and my sister that is getting better!

Love, Heather