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.

Sunday, April 29, 2012

Sometimes Daily Devotional- 4/29

I haven't been getting up early enough for my devotions to occur as I like them to. I have tried but ended up falling asleep in my chair and then going back to bed before I have to get Evalyn up. I haven't had a lot of help with her this week, which is fine, but we have had to go out a lot and that wears me out. Good news is I can put my feet in regular shoes now and my knee pain has not been as bad.


Matthew 28:19

New International Version (NIV)
19 Therefore go and make disciples of all nations, baptizing them in the name of the Father and of the Son and of the Holy Spirit,


I found a book at a thrift store called "Then sings my Soul, Hymn Stories", by Robert Morgan. I just started reading it. Many of you know the song "Be Thou my Vision", we don't know who the author of the poem was but we know it is from Ireland, 8th century, and is set to the melody of a folk song called "Slane". This is such a beautiful song and prayer and one of my favorite lines is "waking or sleeping my presence my light". In the book, it talks about how St. Patrick is the only missionary honored with a global holiday. He was taken by raiders at the age of 16 from his home in Scotland and actually accepted the Lord while being held captive. He escaped and had a dream that he should return to Ireland to spread the good news. Just like God to have us return to the painful places to make a difference huh? Had an abortion, drug addiction, affected with an illness, can't have children, have too many children etc? I'm sure that if you seek God he will bring you back to some of those places to help others. To be a light, to be a St. Patrick. Not only does it help us heal but people flock towards others that understand them and you can truly understand something until you have been through it. I wear an 81/2...in shoes.... sometimes.  I think of my uncle Frank right now on 8E, who has just been diagnosed with aggressive lymphoma. I know what he is going through and personally, it's hard to go visit people there. I do it because I know God hasn't put me through the fire for nothing and I'm able to make a difference in the lives of other cancer patients.

The unfinished painting of mine I found for sale at a store. Got rid of  it because I was going through a hard time and never thought I would finish it. 


God also speaks to me in my dreams at times. I have 3 or 4 that were so clear that if I didn't follow the Lord I knew there would be huge consequences or opportunities misses. Sometimes he speaks through others. The point is that if we seek him, he will tell us what path to take. He's not going to show us the whole map, otherwise we would mess it up thinking we could take some short cuts. We have to step out in faith, like Indiana Jones, and the next step will appear if we are following the Lord. Someone asked why we are not more upset about Jonathan getting laid off from work. It's not that we are not, be we have known that this position was temporary because it is a step to the next job or promotion. We had hoped it would be there, but it is not God's will. We have been through so much in the last 3 years together we know that God is going to take care of us if we keep seeking him. I know, deep down, that his will for us is good. Why roll around in the mud feeling sorry for ourselves when we have an awesome God that created the universe and cares about us? Faith is believe what you can not see yet. St. Patrick left for Ireland despite everyone telling him not too, he knew the Lord wanted him to go.

If you have been reading, you know my story about finding one of my unfinished paintings in a store for sale. How I had been praying about going back to school or starting my own consignment booth. Well, God sent a clear sign this time. Always wanted a neon sign. I'm glad he saved it for when I have chemo brain, I needed that break! I went to pick out my booth yesterday and will begin set up the first of May. I guess the point of this blog as with some of my others... is go and do what you know God wants you to do. It may start out with a card to someone you have lost contact with, something little, then as you seek the Lord more, he will reveal more of his will from you and who knows, he does, what could happen!!! Take that step of faith. Remember to talk to your brothers and sisters in Christ before making a huge rash decision out of no where.... done that one before. I leave you with a link to the song that has inspired many..... this version is Ginny Owens, who is blind. Check out the other verses if you get a chance.

                                                                    Be Thou My Vision 

Have a blessed day! I'm going to see Tom Petty and the Heartbreakers tonight!
Love,
Heather

Friday, April 27, 2012

Savannah, Ossabaw, and the Sounds of Music

I stayed up super late by myself one night in  Ossabaw,  painting, I did this piece, after the song
"God danced the day you were born. Here is a link to a fun video of my favorite song we sang and I have been able to share it will some patients at Emory, my small group, family, and friends.
God danced the day you were Born.

This was the first trip that me, my sister Jennifer, and my mom have ever went somewhere with just the girls.... I say Niagara Falls or California next! We had a great time and I can't wait to plan my own trip down to Ossabaw when I'm better. We will study art, and who knows what!
Savannah Smiles
Savannah is such a wonderful place. We loved the hotel that we stayed in and seeing the old courtyards. I don't think I could ever get tired of it. It is one of the few places that I would be willing to move if the pay was right, but then again, Emory should would be far away. 

I love my sister so much. She is a beautiful person inside and out.  One day, she will realize that she deserves someone that is going to treat her so well, that God has a plan for her, and she is going to have some cute red headed babies. Thank you Jennifer for helping to take care of me on this trip and being my " work horse" when I couldn't carry all my junk.

Alas we have the chickmuck.... hey I look pretty good for all the meds  I'm on. You should have seen how I protected us on the streets of Savannah. I had to threaten one man with my knife. It was in jest but I was serious. Don't mess with Heather and her peeps. 

We had to basically make mom get dressed up and put on makeup, brush her hair, and be the beautiful women she is. It's been a rough year and this year it looks like the Lord is going to mold us even more.....

Love all the colors that we are wearing. 

I had the most expensive meal out of the three of us, not sure how that happened but I got the best blackened scallops anyone could ever have.

We can get the giggles and not be able to breath. 

I have the best Mommy in the world. She would and has dropped everything for me. Praise
the Lord that we caught her ovarian cancer early last year! I would not have made it with out her.

My right brain is not working as well as the left anymore. 

We met some great people! Some were already bone marrow donors! 

Someone who is going through a hard time like me.... but we like our wigs!!!

Every once in a while, when I'm out, I'll ask someone if I can play a couple of songs.

My sister provide amazing back up of course!



Ossabaw Island
Ossabaw is indeed and enchanted place. I have been there many, many, time and  back wood camped. I knew i couldn't do that this go around and thought this singing workshop with Elise Witt. We learned so many wonderful, positive songs, and although both trucks that I could have used to see more of the island was broke down, it was good I didn't push myself more than I did. I had a lot of pain with the swelling and   had to sit down a lot and even missed a couple of the sessions, but most importantly, the Emory chopper didn't have to come and get me. I brought a lot of stuff. I did a shell talk, had field guides, extra first aid, and raised a little money toward Be the Match. I'm planning on getting my own trip together as soon as I am able to hike a long ways. The ladies and men that I met were so positive and sweet. I'm not putting any names down here because I have not gotten their permission. Thanks for a great trip!

On the boat headed toward Ossabaw!!


The hike to the dock, the beach was a ways away and my camera was dead so I hope someone will send me some pics of that day!

I love spanish moss.... it grows from particles in the air. 

This place was post compared to the camp site I'm used to!

Jennifer has a thing about jack assess, just kidding that's me... I want to name mine Mary. 



Gotta take a break sometimes....


Determined to fish in my new pin up girl swimsuit at the dock and get a little vitamin D. 

Our group!
Our leader said that in 7 years Sandy West, former owner had never heard them sing and now she has!




The donkeys would line up to take their turn at the water. 

We had some great people that always helped in the kitchen... my only contribution was snapping pics,a cherry apron, and giving encouragement...my feet were too swollen to do much.

Well, I did do my share!

We met some of the most lovely ladies, not putting names down at this point. 

No skitters or chiggers messed with me...... of course I didn't take a bath for 3 days, but it worked!!


These love bird kept laughing at me!



She not only gave me a massage but taught me two great songs for  Evalyn. 

Singing "Venus between us:"

Add caption
Sometimes you have to have a cigar to keep the bugs away..... you just do. 


Jen and mom singing. Mom was impressive!! There was once that I looked across the
room at Jen and said "Where is mom" and she said that she was " right beside me". My mom
was singing so well that I didn't even know it was her. 


On the dock, skipping out on class but we needed some time together! 



video

My main catch of the day.... I picked it up just right were it peed on the ground instead of me.... that never happens. Final count- 0 fish, 8 crabs, 1 toad, spotted 3 raccoon, 4 deer, many donkeys, 3 Alligators, 2 boars, and a group of piglets. Although I did not get to use my new air force issued pilots survival knife, getting stuck breifly in the marsh while catching bait crabs and pulling myself out by my boot straps, did provide some excited for this country girl. 

Our cook was amazing!!


We stopped by Bonaventure cemetery. I have a thing for cemetery's. 



The Lord.


I hope to be able to add a few more pictures to this. One day I forgot to charge up camera so  I need some of the beach pictures, and the alligators!! 


Thursday, April 26, 2012

Medical update 4/26-Been there done that.

Hello,
Been a long time since I have written. I'm not even unpacked from the trip, had company, and have had some extra issues on top of that.... so blogging was last on the list. I am honestly so overwhelmed with the amount of self care tasks that I have each day that I'm messing up. Not bad, just forgetting to do stuff here and there. I need help. I don't like saying that. I need someone to just sit down with me and help me write out everything I need to do each day in an organized simple way, because doing it alone is so, well, so overwhelming. It's like if I see it on paper, I might freak out. We are dealing with the facts, without much information, that Jonathan is going to get laid off. My uncle Frank is in the hospital, at Emory, on the BMT floor, and my heart hurts so bad because I know what that first week is like and I know what is to come. I had a good care package for him, because I know what you need even if you don't.... a small trash can, scissors, good toilet paper, plates, napkins, spoons and forks, snacks, reading material, a notebook to stay organized, calendar, your own name labels expo marker, aquaphor for your lips, muscle pain reliever cream, flush-able wipes, moving all the the nursing stuff to one place ( they had taken over his room), a fake flower :), some games, pens, dry mouth spray, a night light, slippers just for the hospital, and a few more needed items. Uncles trying to pay me for them.... yea right... after all the money he has ever given me and he has always treated me like his blood relative.



 I can't wait to tell you about our trip, visit with friend Josh, and our awesome play date and to an show you some new pics and videos. That will be coming soon.

Since a week or more ago I've had terrible sweellingin my feet despte that I do stop and put them up and wear these freaking compression hose almost day and night. The doc gave me some medication for 3 days to see if we could get some of the fluid off me, hello my favorite seat, the old pink john. I took it this morning so hopefully I won't have to spend the night in the duck bathroom. They reduced the steroids again, maybe that's why I'm so tired today, except for the fact I went 90 to nothing all day yesterday and even made it to small group. Then they upped an immune suppressant hoping to help with the joint pain I have been having. On my Lord.... I can take IBUROFEN  now!!!!! I almost did a jig in the office.

Then on my way out, I danced and sang a new song I learned this weekend for a group of patients getting who knows what into their body... "God Dance the day you were born."  I'll make a video for you  ;) As Evalyn would say..... it's fun.

Sending the most awesome pics soon!
Heather

Wednesday, April 18, 2012

Be the Match Run/ Walk 2012



Hi,

I'm a recent bone marrow recipient and so far it has saved my life. Without a 22 year old lady from somewhere overseas, I would not be here to watch my little girl grow up or be with my family. Our team is looking to raise funds for Be the Match to help with other fundraisers and those that can not afford Bone Marrow Transplants. We are also trying to raise awareness. I'm singing the national anthem again this year and there are going to be a lot of entertainment that we did not have last year including more music, and other fun stuff for kids and adults. I'm playing on walking the 5K but we’ill see and Evalyn is going to do the tot trot this year!

Please sign up to be part of the run, help fund-raise, donate, or come volunteer your time at the event.

Thank you so much for your prayers and support over these last couple of years.

The team site is www.tinyurl.com/runthosestemcellsout    
Last year our team did great!!!