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.
Showing posts with label Advocacy. Show all posts
Showing posts with label Advocacy. Show all posts

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!!! 












Friday, March 30, 2012

Daily Devotional- 3/30- Happy Birthday and Breaking World Records!

Great Blessings today from the Lord and continued gratitude for prayers, encouragement, food, sitters, and financial supported. Today it has been one year since my BMT. (See link for last years blog) http://heatherwarrencape.blogspot.com/2011_03_01_archive.html  and although it has been and still is a rough recovery, I'm was truly blessed to have found a 9.5 match. The BMT was still the best option and still helping me even though it did not end up being a cure for me.
Receiving stem cell is just like getting blood, but more people in the room.



Other great news is that the bone marrow drive in Athens was a great success, we beat the work record for the number of signed ups in a 24 hour period. Here is the link to the Athens News Paper. So many lives will be saved. Some people stayed up for the whole 24 hours, I volunteered for 4 and still recovering, but it was great. There is still a lot of fun raising to do so please go to Kajal's Be the Match Page if you are able to donate some money to this huge drive. It's not cheap to DNA type.   If you still want to sign up and did not get a chance to do so, go to www.bethematch.org   Please continue to pray for Kajal , and others,as she is looking for a match. 

Friends that came out play, most helpful and sounded great!

I did some singing and playing too but I'm really good at "barking" at people.

My little area I set up for donations. Amazing what a bald head and some pictures will do!


I just so grateful for everyone that showed up and can't wait to see what else God is going to do in my life and others. So today's devotional is simple.... be thankful, be giving, bring life to others. 

Monday, March 26, 2012

BE THE MATCH DRIVE for Kajal Patel



Alright, Athens and surrounding peeps, we have a 24 hours BE The Match drive for Kajal. I need you all to spread the word and come out sometime to donate, support, swab your cheek, or hey be on the news, we will have 24 hour covered from the news and radio. I will be playing and singing outside the GA Theater at 8... guitar case open. Please come by and play and sing... cause I can't do it all night, I don't remember enough songs anymore!

Tuesday, March 27 thru Wednesday, March 28
4pm-8pm Omni Fitness Center
8pm-2am: Georgia Theatre
2am-6am: Waffle House (right by Georgia Theatre off of Clayton RD)
6am-10am: Ramsey Center & 7am-10am Omni Fitness
10am-4pm: Tate Center

http://www.bethematchfoundation.org/site/TR?px=1812947&fr_id=1461&pg=personal
http://www.facebook.com/Beaheroforkajal

Tuesday, September 27, 2011

Be the Match Race and Fundraiser!!

On our way to Atlanta, this girl loves hotels. 

My brother Scott, me, and the Rabel family. 

My brother Daniel did excellent on 3 hours of sleep.  Kids.....

The Khoury's and Danielle.

What's up Doc? Dr. Khoury finished first for our team.

Scott did a great job walking with us and meeting new people. 

The runners....

Funny... Daniel said, where's Jennifer, and he had his arm around her, hee hee.

So thankful to be keeping up with my cousins!
         
 The Be the Match Race and Fundraiser was a huge success with over $60,000 being raised! This money will go to research, helping families with medical costs, donation costs, awareness, etc. Our team, "Run those stem cells out!!" raised the most money out of all the teams and Judi Rabel was the top fundraiser and Danielle Rabel was the fourth!! Way to go team!! We had 8 people complete the 5K and the rest of us thought we missed the 1K turn off but it was actually a little over a mile.  I think we only had one person throw up.... a few felt like it. It was great to see all the people out there, all the survivors, the donors, the volunteers. Be the Match let us use an extra hotel room the night before. It was such a blessing to be right there in Atlantic Station so early in the morning, with Evalyn, and with singing the national anthem. Everyone said that I did a great job, and to tell you the truth, I surprised myself. The Lord helped me through the song because I was coughing all week and was scared to death I was not going to be able to do it. My sister was the alternate singer, she just didn't know it. :) My brother, Scott, walked with me and he did an amazing job, we even ran the last 10 feet. I had a short interview and will hopefully find out soon when it will air. It was so great to have my family, some friends, two of my cousins, and my wonderful physician participate in this event. Some how I missed getting a picture of my brother and sister in law. Sorry ! Next year, maybe I will run, hmmm maybe I'll walk the 5K. After the run, Danielle's dad treated us to West Egg where they have the best pumpkin pancakes, ever! Here is the video of me singing the National Anthem.

Monday, January 31, 2011

Be the Match Donor Drive

Hello!
There is going to be a donor drive at Athens Tech on Feb 14th. It being on a Monday it is going to mostly target college students but anyone that can get off work during lunch  to go get a cheek swab would be great. Of course, volunteers are still needed, so if you are interested in that, please let me know. Other ways to help is to sign up and get your kit in the mail at Be the Match, donate funds to Be the Match (I have a fundraising page set up now at http://www.bethematchfoundation.org/goto/heather ),  and also talking to the company that you work for or church that you go to, and see if they will host a donor drive.I can get some info packets that you can take to your supervisors, if you let me know. Soon, I will post information about a fundraiser comedy show in Atlanta on Feb. 18th. 
The flyer below is printable, for those that live in Athens, please pass some out, email them out, or what ever you can do. Thanks so much for your support and prayers.

Friday, January 21, 2011

Jan 21st More blood is a good thing, but don't over do it.

Hi,
        I have been feeling great the last couple days because I have enough oxygen going to my body! I kinda over did it yesterday though, which is a natural thing to do when you feel good for the first time in a while. My sister came up to help out for a couple of days. I was able to get a lot of work done, went on a walk, and was able to compete in some serious Michael Jackson dance game. Then I got all wound up and couldn't go to sleep only to start the day super early with Evalyn. So, now that the blood has thinned out a little, I'm getting tired again. Hey, I'm thankful for the highs when they happen :). The mouth sores are gone now and I can drink and eat what I want. I'm still having some skin issues and night sweats. Please continue to pray for strength for our family and a match.

First ride in the stroller facing the front :) 

We are Silly Siblings
         Today, I found a news story about an Indo-American lady that needs a marrow donor. As you know, it is very difficult to find a match if you are a mixed race. Please share this story with others so hopefully she can find a match and live! http://www.insidebayarea.com/dailyreview/localnews/ci_17131706?source=rss

Thursday, December 2, 2010

Dec 2nd Medical MJ and Mental health!

Middle of the night, I was too excited to be able to be up that I couldn't sleep!
Hey everyone,
        Thank you for your prayers and know that I had some, a lot of, time to pray for you also. I have been laying in bed forever it feels like. The headache, or death ache if you want to call it that,  ended up being from the LP. Read all about it at this link.  It can go away with time, lots of caffeine, and with a blood patch. Did you know there IS caffeine in IV form? I know some of you are like " I knew it was out there somewhere". Caffeine didn't work, time probably would have but I couldn't go home just to lay in the bed for days. I drank enough cokes, took caffeine pills, then IV caffeine, nope. So for maybe the first time since the ALL hit, I broke down bailing my eyes out in front of 3 nurses. I told them that this was not directed at them but that if I didn't see anesthesiologist today to get a blood patch, I was going to have every nurse and doc in my family up Emorys Ass. Good one Heather. Well, they believed I was in pain, but it still look a while, all day. The blood patch was probably at least the 6th worst experience of my life, I can't even write about it right now. It wasn't the pain, although my back is really hurting since I have had so many sticks in my spine. My dear husband, maybe you had to go through that a few years ago, another day I'll tell you blog readers,  so that you could tell me the story and I would know so much about it.
           Although, it has been very frustrating to have to eat laying down, not be a able to organize my room, not finish Evalyn's hat, not play my guitar, not writing, not seeing my cousin, and not staring work like I wanted and feel like I need to do.  It has not been all bad. Sometimes you get what you NEED, right. Well, I needed to be reminded that this is not about me, again, and that I need to go with the flow more. So, just so happens that Stacy that works with Be the Match was working a donor drive, where, right out my window. She came up to the room yesterday and we had a great conversation and we are really excited about the Athens drives, that take money. Each test and filing of the DNA costs about $100 per person. No, if you donate you don't have to pay but someone has too. I will be asking store owners in Athens for money, if I can get it from the state of GA for my peeps, hopefully I can do it will a mask on. That's a blog in itself, just pray that God's hand will be on me during this time of "lets smile and give this girl attention time cause she has cancer and a baby and blah blah" and remind me that it is not about me. Always remember, tree in a forest.
                My mom came to visit and we talked about serious things. My mom decorated my guitar with the lights and brought me some food. She's going to start to think that I'm always sick, because it seems like the days she is able, I need her help the most. My mom also brought me the "it's been lovely now but I have to scream" button that I gave her before. My Dad came today while I still couldn't get up. Bless his heart, he gave me some Coke from work, ha ha. He worked hard last night and was tired but he loves me so much he still came to see me. More good news, I was suppose to get another LP tomorrow but Dr. K cancelled it due to basically have 3 in two days. So, I'm going home a day early if I'm ok in the morning.
                  Over the last two days I have been encouraged by so many believers and and staff. I have made friends here and they really blessed me and took care of me. The big booster for the day, no not another bag of Chemo, but that FOX is picking up the story. Michelle, one of my sister and my friends, tipped off the health reporter for Fox. It got the info together and ask my Dr. K, Stacy from Be the Match, and a successful BMT and cancer survivor, Mr. O, if they would be willing to do short interviews. They said yes, and I sent the contact info in. Beth, from Fox, called and said that her photographer would be up here today to take some shots here at the hospital. Today... I was laying in the bed all day waiting on the blood patch and this is the photo shoot of my life. Not funny God. Timing, done with patch at 3:30 pm, have to lay flat for 60 min, Fox gets here early at 4:10. My wonderful nurse, Laura, helped me put my shirt back on, and helped me with a little makeup. We couldn't find a mirror and I couldn't stand up, so I used the back of a CD! I got to met someone else here at Emory, Vince, and he knows my aunt Sharon, and I got to brag on her, again. So fun.  Reggie, from Fox, took pics of my pictures, of the cards that my people sent me, and a little bit of video. Fox is coming out the house on Tuesday so that Evalyn and Jonathan can be on there, and Wallace and Chloe, Yeaaa! Lola is going to be pissed, but she gets made at everything, that's our turtle.  It will probably be super short and not show the good side of my face, just Kidding, if it can save one more life, I don't care what it looks like! Nope, don't know when it is going on the Tele, I'll post it when I know.
            As you might imagine, I want to stay up all night and work, and write, and sing and make something out of nothing, and NOT be in bed. I'm seriously rubbing my eyes and my bald head trying to stay awake. I'm a kid, I tell ya.
I decorated my pole... didn't get to hall walk though, or put together a gang.

Sunday, November 21, 2010

The Music Drive for 6E

             


        Hey everyone..... the patients here on 6E need your help! I'm looking for people to help with making this oncology floor, 6E even better. Most people are blind sighted by a new diagnosis and then told they are going to be away from home 3-4 weeks. Let's just say, unless you make it happen there is not a lot to do here. Next... we are going to work on the book collection, but one thing at a time.  We all have DVD players in our room and they have come DVD's to check out. However, the DVD is really high up and a lot of the older patients are scared of DVD's. Boo!  Music has been the best therapy for me during my extended stay here at EUH and I'm lucky enough to have an Ipod and computer. I think it would do wonders if each room had a small portable CD player/radio that is simple to work. I will take a while to get them in all 20 rooms here so we will start off with a few to check out. I'm telling you this will help these people heal. So I'm asking people to donate used portable CD/radio players ( they can have a tape deck too if it does) to purchase a working one from a thrift store, or purchase a new one as a Christmas gift for this floor.
                For those that would rather make or donate CD's that would be great too. Please make sure that they are labelled and in a protective case if you are making CD's. If your are like me, I have all my CD's on I tunes and don't really need to CD's anymore. We have backed up all the music so what is the point? I'm working with the director about getting a shelf in the waiting area for this. I'm also working on drop off points around Atlanta/Cville/Marietta/ and Athens if you would rather drop it off than mail it. Please just let me know where you are and I'll let you know where you can take it. Then, on my many 5 days trips here, I can bring the stuff with me. There are a lot of sick, lonely, and bored people here that need our help! Music can help heal!         
           You can email me at heather.cape@yahoo.com