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.

Jan 28th Perfect Match!

Proverbs 3:5-6 

 ⁵ Trust in the LORD with all your heart
   and lean not on your own understanding;
⁶ in all your ways submit to him,
   and he will make your paths straight.

                        I have to be honest, I have been dreading this day for weeks…. What is it about us humans that we have to worry so much. I was petrified that they may tell me that today that I didn’t have a match. I do trust him with my heart, it’s my head, the understanding, I have problems with.  If you have been reading the blog  for a while, God had given me a dream about the bone marrow transplant and that I came through ok. Now, why I couldn’t just trust 100%, I don’t know. Oh right, because I’m not perfect, give yourselves a break Heather (I’m writing to myself again). God’s still working on me, to make me what I ought to be….  This past week I have not been able to write very much. Sometimes I can only take care of myself, Evalyn, and keep up with work to keep my insurance, oh and get paid. So again, no news is good news…. But today I have WONDERFUL news.

"Well, I guess some like it hot. I personally prefer classical music"

                   Today, my friend and mother of a person I had on my caseload, Pat, took me down to Emory today to meet my mom, while Jonathan went to school and Grandma Judy watched Evalyn. It was hard to leave her because she has been running a fever and we don’t really know what is wrong. We got to Emory fine, the lab went smooth…. I saw Dr. Khoury almost on time.... got a room on 6E…. no spinal headache from the LP…  Dr. Khoury, I’m so lucky to have him, received a big award and grant yesterday, click here…….got two new wigs…. it was all smooth sailing. FYI, spinal fluid is clear like water, I had them show it to me.  At the doctor’s appointment, I was sitting in the room for a little bit just praying and praying, then 4 doctors and nurses walked in. I was about to choke on my heart!!!! Then Dr. Khoury said that they have 3 potential matches for me, 2 partial (90%) and 1 perfect match! I started crying my eyes out and mom shed a few also! He said that we may even be able to do the BMT sooner than we thought. Emory still have to get the samples and run their own tests but what is important is that I have a chance to beat this! It is still going to be a long road to recovery but I don’t really want to think about the details of that right now, I’ll tell you later. Praise the Lord!!!! My mom was so sweet to stay with me today and then set up my room for me while I was at the LP. 

Sweet girl had a fever and was still smiling this morning before I left. 

                     I will be at Emory for the next few days getting chemo and another LP. I hope to go home a little early since I got one of the LP’s today. I also hope I can talk someone into coming to visit me and bring me some food to eat ;) Please pray that I do not get mouth sores, sick, and that the treatment goes as planned. You can also pray for Evalyn to get better, I won’t be able to be around her if she is sick when I get back.  Jonathan is really getting into school now and will have test starting soon. This is going to be crazy next 4 months, but I guess if we have made it through the last 3, then God will bring us through.

                  At small group last Tuesday, I really broke down. I just felt so tired of it all, weak, and down hearted. I can’t do everything I need or want to do for sure and it’s very frustrating. God is amazing in how he helps me get from one day to the next. I start each day seeking and praying for strength to make it through and get the things done that he feels is most important, not me. That means that the closet is still not organized, the kitchen is not arranged how I want it, and I don’t have the energy to cook for our family. Praise the Lord that he has put so many people in our live to support us with babysitting, prayers, food, and even financial support. We are truly blessed. I do believe that God’s plan is perfect and that if it is his will for me to survive he is going to make me stronger and all of you believe in him more! I also know that Be the Match is going to play a huge part in my life. Besides the Fox news story, there is a donor drive at Athens Tech on Feb 14^th, a fundraiser in Atlanta called Laugh out Loud, and a newspaper article at the local paper in Cartersville. I just got off the phone with someone who is going to have a fundraiser and a possible drive in April at the Classic City Roller Girls bout they will be having in April. I have also heard of a church that may be doing a drive. God has already used this situation to get so many people to sign up.  How many other lives will be saved because of this suffering that I have to go through? I may never know, well, I will in heaven.   

Check back soon as I will be posting information about fundraisers and donor drives.  

My Red Betty Page wig. 

Love,

Heather

Jan 24th Time to play and be productive!

         Hello!
               We went to Cartersville this past weekend for a night for the first time since Oct! Evalyn had a good time playing with puppies, Grandpa, getting a bath, and meeting her 2nd cousin, Liam. Mom made great cookies and pork loin, while Jonathan, Corynne, and I battled for 5 stars are the Michael Jackson Wii game. Wallace was too upset because we left Chloe in Athens. We went to see Nanny, she is doing a lot better, and our friend Tammy stopped by to see us. On the way to Cartersville, we stopped by and saw Robbie and Christy, Jonathan's brother, and they made us some yummy breakfast. We were blessed in the last few days to receive $70 between different people! It's going to the heat bill, I'm freezing my butt off.
                  Today, Mirka came to babysit for the first time so that Jonathan could study and I could get some work done. She also brought some of her wonderful chicken soup and a book for me :). She is too sweet. We have another new babysitter starting this week, named Pat. Pat was sick last week and we hope that she is feeling better. Evalyn and I both had doctor's appointments today. Jonathan dropped me off to get my labs done and he took Evalyn to her appointment. My labs were good today, meaning that my platelets are high enough to be able to go to the dentist tomorrow. Yes! No! I walked over to Evalyn's physicians office and since I brought a blue mask, very thick and uncomfortable, I decided to step in. I'm so glad that I did because I got to see her tearing up the paper and took some great pictures. Maybe I should try that at Emory on Friday. Maybe it won't take so long.

My first bath in the bathtub! 

                   This is the week that for the most part I will feel really good. My counts start to head back up, at least, they are up for me, and I start to dread returning to Emory. I had a horrible dream last night that we went to the appointment and they told me that neither person was a match. It was awful. I hope that dream was just one of those "fear" dreams where my mind plays out what I don't want to happen. Then again, if that does happen, it does mean that  I won't find a match, it just means I won't find one yet. Leave it to God to make you wait to the last second so that you will learn to trust him. Geezzzz. Yea, well, I'm calling Emory tomorrow to see if they know anything. God is great and I know that he has a plan, even if it is not mine.

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

Jan 19th I left the house twice in one day, once with real clothes on

Hello!
            The title of this blog may not seem like much to normal people, but leaving the house at all is an accomplishment, twice is unheard of. Once I had on jeans. Yesterday, I had to get my blood checked and ended up having to go by the hospital to get cross-typed to get blood. My hemoglobin was only 6.8, but I was feeling better. Again, I don't know myself anymore, because how I feel is relative to how bad I have felt. They said it wouldn't be ready till today, so I went back home. Last night, I decided that although my counts were low I would go to small group. I figured that I'm going to the hospital twice in two days, so that was more risky then going to fellowship with my brother and sisters in Christ. I realized on the way to small group, that this was the first time since October, Jonathan, Evalyn, and I have all been out together. Well, in Nov. they both came up to Emory but I was already there so it doesn't count.  I can't go many places and when Evalyn goes somewhere, it's usually with Jonathan. We are so paranoid about me getting sick or even Jonathan or Evalyn getting sick, and we are so busy with doc appointment, we stay at home most of the time so that we can be together. See if Jonathan or Evalyn gets sick, we have to be separated.

Oddly, I wanted to take pictures of our outing but then didn't get a pic of the three of us.

                     This was very haunting to me to realize that we have not been out together and drives the point home even more that we are not normal. Evalyn does great meeting new people and with everyone that sits with here but I realized last night that she is not getting exposed to different environments let alone other children. I would love to start going to Momma/baby group or something but I'd have to wear a mask the whole time and I'm not really supposed to be around kids that have recently had live vaccines, which I would not know. It's natural for kids to get sick and build up immunity but what if Evalyn got sick and I couldn't see her or take care of her while Jonathan had class, that wouldn't work, not sure what we would do??? Hopefully we will have some nice warm days soon and at least go to the park or something. I think that I'm going to contact Full Bloom, an early parenting center in Athens, to see if they would be willing to start a group for children/parents that are immune defficant. There has to be people out there like us.
                     FYI, here is the link that that video that I was talking about where Evalyn is laughing.
                   At small group last night, we celebrated Mirka's birthday. Jill made dinner and we had prayer time. This women is so wonderful. She loves the Lord with all her heart and she can't help but pour out that love on others. Sean is truly blessed to have her as a wife and we are blessed to have her in our life. Mirka, we love you and loved the food that you sent home to us. Thank you for all that you do! We had a great time last night and Evalyn and Brook laid down together for a little while, they even held hands :). We love all of you!
                  Please continue to pray that one or both of the potential matches will be a match for me. I'm kinda getting on pins and needles about it. Don't tell me that if you were in my position, you wouldn't be able to stop yourself from asking yourself, "What if they say I don't have a match?", " What if I don't make it?" No, you can't say that you wouldn't because you would. I'm shedding some tears as I am writing this because the thought is overwhelming. I don't want to die and not see my little girl grow up. I'm scared of God's plan, this is scary stuff. Not that I don't have hope and faith because I do.... it's the peace area that my human side really shows through. I was reading yesterday in proverbs and the Lord told me again that this is in his hands.


The mind of man plans his way,
But the LORD directs his steps. Proverbs 16.1

Jan 16th Evalyn Rose is 6 months!

Our little girl is 6 months old today! She is such a happy, silly, baby. Today, we got a great video of her laughing, it's on face book, but I'll try to get it on here soon. She also tried pears, which she doesn't seem to like very much. You should have seen her face! Please keep her in your prayers that she will grow strong and stay healthy.

Watching the puppies play with Daddy.

Doing some push-ups.

Last week in the snow! 

Jan 15th The snow is finally melting....

  Hello,
          This has been a rough few days home to tell you the truth. Being couped up in the hospital, finally getting home, and then being couped up in the house hasn't helped matters. I will be glad when all the ice and snow is gone so that I can take a walk. Thank God my uncle John and cuz Andy were nice enough to come get me on Wed. They are so awesome!
                Mostly, I have been sick to my stomach but I also developed some mouth sores, which is common with chemo. I'm not sure why since I didn't have any with the other rounds. I have been very tired and have not had much of an appetite.The mouth wash that I have to use tastes like crap and I couldn't work very much at the end of the week. Wow, that's a lot of complaining. I say all that the also say that I have been down, way down. I think the combination of everything made me very depressed. I'm starting to feel better now but each day is struggle to get what I need to get done, done, or even to take care of myself and Evalyn. It has required every bit of my will to get up to do something. Luckily, my mom came to help for the weekend! It's always great to have her her, she is so good with Evalyn.
             I have a lot to be thankful for and I also have to realize that it's ok to have some bad days and it's ok to have some really bad days. Everyone seems ok with that except for me. I'm a weirdo sometimes. :)

Wallace crawled into my robe to make me feel better and to make himself warmer.

She has found her feet! 

Yummy! 

My violet is blooming even though it has been ignored.... made me happy. 

Jan 11th Poor hands, stupid snow, Great movie

              This treatment week has gone smoothly for the most part. I have not had any nausea, headaches, or anything horrible happen while I have been here. For that, I am thankful. I have been really tired but lets face it, I’m just going to be tired most of the time till all this is over. I’ve had some new skin issues develop, weird red spots on my hands. The diagnosis? Chemo does weird things to your skin and we will keep an eye on it. The skin around my nails is starting to look pretty weird too. It’s like my cuticles are disappearing.  I’ve had some nose/ throat issues but it has not developed into anything too bad, just a little scratchy. Back pain from the LP is normal, not too bad this time. I included a picture of my PICC because I’m not sure if I have shared that with you. It is like a little alien coming out of me with tassels. It is really helpful because I don’t have to be stuck all the time and get bruises up and down my arm.    The LP went smooth yesterday and I have one more to do this round. I have bribed the PA to try and do the LP sooner than later tomorrow, if I play him a song on the guitar. It’s all part of my plan to hopefully talk someone into coming to get me during the warmest part of the day, before traffic.

             I don’t like it when it snows like this, even when I’m home. Now it’s worse that I’m not home with my family. My mom didn’t get to come up to watch Evalyn, UGA is cancelled, roads are still bad, and as of now I still don’t know if I will have a ride home tomorrow. I want to be safe of course and don’t want anyone else to get hurt, but I’m READY to go home. Just got a call from Jonathan, the power is out now. Great. He's packing up to go to a neighbors for the night that has a fire place. The hospital staff has been amazing. Some doctors and PA’s that live close have walked 3-5 miles in the snow/ice!!  A lot of the nurses and other staff have been here since Sunday. Today they issued a cold blue which means that no hospital staff can leave right now. The food is getting worse, I hate to say. Everyone’s hair is looking worse too, except for mine, ha ha. I am slowly loosing my eyelashes, I’m pretty sad about that one.

I'm smiling, really.

Add caption

               While I have been here, I have tried to get some paper work done because I know I’m going to miss a couple of days do to feeling bad at home or appointments.  I’ve also been working on two new songs, each with a new strumming pattern, ooooo, exciting. The Hawaiian strumming pattern is a little hard to sing with, it’s going to take me a while. My parents and my sister, Jen, came to see me this weekend; my other potential visitors have been snowed in. Today, I walked around downstairs and took some pics and cursed the snow. I even turned on the T.V. while I was here. Then I got mad at it and turned it off. Not sure why I try that sometimes. I’m still reading The Emperor of all Maladies, that I told you about. Just read about the tobacco industry and the craziness it took just for Congress to admit that there was a connection to cancer. It’s amazing what money can buy…. makes me thing about the food industry influence now. I watched an amazing movie called Temple Grandin with Claire Danes. It is a true story about an girl with autism who overcomes her disabilities, graduates college, and speaks and writes on autism now. She has also invented more human ways to handle livestock.  It won a lot of awards and Claire Danes did an amazing job!  I have a brother that has autism, Scott, for those of you that do not know that yet.

I love this huge painting in the lobby!

My other favorite.

                I have been praying a lot for the Lord to give me strength to go through all of this. I pray that I have enough energy to take care of myself, Evalyn, work, and be a good wife. I pray that when I’m home alone, God gives me the strength to take care of my baby. I pray that I will ask for help when I need it and hopefully get a couple more babysitters to commit for a few hours each week. I pray against depression and hope that I can have joy in my heart each day. I pray that I will not be so anemic so that I can have more energy. I have tried to pray for other people too, but I must tell you I have prayed mostly for myself and my family these last few days. We need God’s supernatural strength. 

Jan 8th Balloons,volcanoes and designer nails- 4th admission

              I’m here at my studio apartment, as my aunt Lisa likes to call it. I don’t really have the best room this time and was too tired yesterday to think about switching today, so I didn’t bother. I’m don’t have a fancy view this time, but I’m pretty close to the helicopter landing pad, so maybe I’ll catch a good glimpse. I’m debating on if I should try to talk someone into letting me go see the landing pad since it is right there. I’m so close that I can see dust blowing outside the window. Maybe I can use the news story to my advantage…. Maybe I could take a ride! Yea, right. Ha ha. I’m on the eighth floor this time, which is the bone marrow transplant floor. It’s good to see the balloons on the door which means that they just had the transplant. It’s nice to meet some of the staff up here and learn more about BMT’s.  I’m getting plenty of sunlight in this room. I think I might get a tan on the right side of my face, with the shade down. I’m pretty sure that sunscreen is not given in the welcome package. I decorated first thing with cards, pictures, and of course my little lamp. The I pod actually came out first and we listened to the Paper Route mix as we unpacked a little. Jonathan actually had to leave pretty soon after getting to the room because the day was long and traffic was going to start soon. I said my tearful goodbyes. I felt like crying all day, so it was good to just do it, you know? On a good note, I did get to use my fancy vintage luggage that I got for Christmas!

It's so beautiful, I can't put it in the closet. 

         So just a little bit about our day when I come back to Emory. Don’t think that I am not thankful for the amazing medical care that I am receiving but the truth is these days are so long that to ask anyone but close family to go through it with me is just wrong.  Jonathan will be at school on Fridays soon so that means we have to get a sitter and I have to get a ride. The ride can’t just drop me off because there is no where to put my stuff while I have all the appointments. So, we start with labs, and then have an appointment with Dr. Khoury, and then I have to wait for a bed to be admitted. This process takes about 5-6 hours and that doesn’t include the drive and then the admission process I have to do once I get to the room. I may get to start treatment by 10pm if the pharmacy has the chemo yet. The worst part of the whole thing is sitting there with a blue mask on, breathing my own air, and thinking about how much longer is it going to be.  It seems like I would be able to entertain myself, sometimes I can, and sometimes there is someone in the waiting room talking so loud, you can’t help but listen and wonder if an email should be sent out about waiting room etiquette.  I guess we need a splitter for headphones so we can just watch a movie when we get to that point.

My white stripes....

            I have a few new side effects from all this. This week, I noticed that my nails have these white stripes on them. So far I have two lines. I’m not sure which chemo is causing it or which cycle; I have an A and a B. I guess the lines will just keep going up the nail. It might end up looking pretty cool. I just hope they don’t get brittle. I have to pick my guitar with my nails. Ok, so this is super gross, and no I didn’t take a picture, but maybe I should have to go into the world record book. I’m here to record these things right now, there is no point of leaving this one out. When my white blood count starts to go back up, any place that is healing or needs to be healed can have an overflow of white blood cells and it can turn into a pus party. So, I ended up with a mountain of pus on top of my shoulder. I had always had a little bump there but never really knew what it was and it didn’t really do anything. So basically, this thing was too big to be called a zit. It was so gross. Anyone that saw it yesterday, docs, nurses, and Jonathan, wanted to get a hold of it. They were going to have to “lance” it today, but it took care of itself for the most part, unless my mom and my nurse decided that it was not done. I say this was too big to be a zit because I bet you never had to take pain medication for a zit. God, I hope nothing like this happens again. It’s so embarrassing. Some people have come in here because I was featured on the news story; some people have gotten off 85 to see the world biggest human volcano. I’m going start charging.

           I managed to walk a mile around the hall today, 21 laps, so boring, but I told myself I couldn't write this blog until I did it. I guess I still believe myself. I’m on cycle 2 B of the Hyper C-VAD A new hospital protocol has everyone getting a blood thinner shot in their stomach each day. Not really fun, it kind of hurts and now I have two dots on my stomach to go with my other skin issues. This round I will be getting two more Lumbar punctures, where they put the chemo in my spine to prevent it from spreading there and to my brain. A different person is doing it this time, which I’m nervous about but hopefully it will work out ok. Please pray that I don’t get a headache with these LP’s, they are so bad.  

My pretty pics are up!

             So I saved the good news for last. Dr. Khoury said that they have two possible leads for donors for me! They have to go through some more steps and are waiting. That is such wonderful news. Please continue to pray that one or both of them is a match for me. A please, donate if you have not already. There are so many people waiting for donors!  

Be The Match!

Jan 7th Foxy Family

                  

              Wow! What a week! We are so lucky to have been featured on the Fox 5 news story and Good Day Atlanta. We hope that many people sign up to be donors, not just for me, but for anyone. Beth Galvin and the team did a great job when they came out to the house to Tuesday. They were so nice and easy to work with. We had some funny moments that included someone stepping in doggie do and Wallace acting like it was a special on Boston terriers.  As many pictures as I take, I’m not sure why I didn’t get one with Beth that day. Maybe, when we do a follow up story, when I’m cure, I’ll get a picture of us. I have been overwhelmed by the response to the story. I have a lot of people contacting me through the blog and face book. We are so thankful for everyone’s prayers, comments, and willingness to become donors. I have also read some encouraging success stories of people with ALL that have had successful BMT’s.

              Due to being so tired this week, busy, and everything going on, I haven’t been able to write very much…. When that happens…. Consider no news, good news, just means I’m super tired.

              Our family had a scare this week when my dear Poppa Bill had to go to the hospital for one night, but it seems that everything is ok with him, and we are truly happy about that. My Granny was still on IV antibiotics so I was taught by the home health nurse how to hang it for her. Luckily, my Aunt Judy came up and helped handle the rest of everything, God knows I can barely take care of myself, and I’m not doing a great job at that! I think I could have hung the antibiotics, but I’m no nurse, and my hemoglobin has been running in the high 8’s, so sometimes there is not enough oxygen going to my brain. Judy coming up to help was wonderful so I could concentrate on my family. Dad and Fay had to spend most of the day with Pop at the hospital. I hated not being able to be there with him. I would sleep in a chair all night for my Pop.  The next day, I just tried to get some rest and spent some time with my husband and baby before coming back to Emory. We were able to see Pop last night after he got home, and he looked like his old self. Ha ha

Evalyn was talking about something very important here.

                    This week, Evalyn started sweet potatoes and she thinks the word pee pee, in a high pitched voice, is hilarious. She did such a good job when Fox came and so did Wallace, if you noticed him on the bottom left.  She seems to be enjoying her teether more and loves her activity center. That was the best $35 dollars I have ever spent (craigslist). She loves to stand up and it gives her a place to play while we are doing things in the kitchen.  Her laughs continue to warm our hearts, she is so happy! Evalyn also loves just laying on a blanket, talking, and rolling. She still only rolls over on her stomach and not the other way. She is strong though, and likes to do pushups, unlike her wimpy mommy. Upper body strength is not my strong point. Now, if I need to move something with my hip, well buddy, we are in business, unless my platelets are low and then there will be huge bruiseJ.

Favorite memory of the week, Jonathan has her laughing like crazy, of course, she stopped when I tried to take a video. 

Jan 3rd Medical MJ and marshmallows

Hey Everyone,
           Just a quick update on medical issues and general well being. I know that there are others going through this, please comment and let me know how you handle all this! I've been feeling ok the last few days but really, really tired! Sometimes I feel like a marshmallow. I know, what does a marshmallow feel like? Right? It's hard to explain.... kinda like a lump on a log but will less stability. It is difficult to have to tell Jonathan, again, "honey, I have to go lay down." I know he understands but that just means that much more on him with Evalyn, the house, or whatever else is going on. Sometimes I don't sleep when I lay down, I just lay there. I guess marshmallows don't really sleep either. I do some praying when I lay there and some pleading.
           The reason I feel so tired is because I'm anemic. A normal hemoglobin number is around 12 and mine was about 8.9 yesterday. They give me 2 pints of blood when I'm under 8. Basically, when my blood is low like that, I'm not getting as much oxygen and my body has to work that much harder. It is more difficult to concentrate and remember little things. Chemo brain. I have three appointments this week and trying to work at the same time! Jonathan starts school again soon and boy are we going to be busy. Lord, give me extra energy!
           Mentally I'm prepared to return to Emory this Friday for 5 days, emotionally, I never want to leave my sweet baby girl, and physically, well, who can get ready for poison in your body? I am excited that Dr.M, one of the first doctors I had in Nov., will be back on 6E. I really like him a lot because he would always sit and discuss things for a little while. My favorite is when he will say, " Your treatment is going as we wish, but don't think I'm saying that I wish you to be sick, because we don't, I'm saying your responding well, etc" It always cracks me up because I know that he is going to say it. I may play my "near beer" joke on him this trip. I also get to take my new, vintage, luggage to the hospital with me. I will be traveling in style!

In need of IV caffeine, which they do make......
Heather