Chillin out

Hello,
The fevers have still come and gone but I'm no longer spending 18 hours in bed. My mom is here now thank goodness. I didn't tell her how back it was last week because they were on vacation and I didn't want them to have to come back. Jonathan's mom was with Jonathan's sister, so besides some sitters here and there we were on our on. It was a blessing Jonathan didn't get that job or mom and dad would have to come back for sure. I was able to get up at a decent time today and plan on going to my office down the street. My hands have started to shake, not sure what that is about. Good news I forgot to tell you about it is that my CMV level, the virus that can come back, is almost down to 0, and I may be able to get off the medication soon. I also don't have to put one of my creams! Woo Hoo. This fri at my appointment I'm going to put the envelope again and see if I can go on a two day trip to a Monastery for a Yoga retreat at the end of June. I better wear the Betty Page wig, or maybe Marilyn. Maybe I'm paint something on my head. My hair is starting to grow back some and this may sound weird to you but I like being bald. It seems like with this menopause stuff going on I'm getting some hair in weird place. I will sell body parts to get electrolysis before I have weird hair at 30.
Love,
Heather

I got me a fever, fever in the morning, fever in the afternoon, FEVER in the evenin’, fever all through the night…

(For those of you who don’t know that song, you should Google it.)

TODAY’S BLOG IS ANOTHER GUEST BLOG, WRITTEN BY HEATHER’S HUSBAND, JONATHAN (Heather dictated her thoughts to me, and now I will write them for my wife, in the 1^st person, with my own notes added in italics)

My complaints, in this blog and in all of my blogs, are not to gain sympathy or because I’m fishing for comments reassuring me. I’m complaining because this is real life and I want to document what’s happening as it is and not sugarcoat it. Speaking of fishing, I haven’t done any of that, but oh I wish I could. (Me too, because that means more free fish in my belly.)

Dr Khoury had a family emergency and had to leave last night, so he requested I come in yesterday. So I called some babysitters, told Jonathan he can get out of his yard work if he drives me to Emory, and then we got in the car and the trekked 75 miles to Emory. I slept almost the whole way. Jonathan even said I snored. (She did. A lot.)

The good news is, despite the fevers and head cramps, Dr K feels everything is going as normal, and that these things are to be expected and are things that I will just have to make it through.  He did prescribe a new med for me though that will hopefully slow down my high heart rate.

As you know, I have been taking and talking about steroids since November.  I have been jacked up like Barry Bonds [there has to be a baseball remark when talking about steroids, right?]. Now I’ve hit the wall and I’m crashing.  To let you know how bad I am crashing, let’s just say that I was in bed for about 18 1/2 hours today.

Although the sleep is nice, a steroid crash can lead to depression… and this is somewhat true in my case because I was starting to be able to do some activities that I was able to do before.  I was starting to be able to take care of Evalyn, to feel like I’m a good wife (you are, sweetie; you always have been and always will be), to get up early and do my daily devotion and exercise, to work with a clear mind, and to take care of myself.

I haven’t been able to blog about things other than medical concerns… and I have lots on my heart to share… but I guess it’s not time yet. But man, do I have some cute pictures of Evalyn to show you!

(And as a side note, please pray for the patients of Emory. There were about 600 people who were exposed to TB throughout the last 6 months. News just came out about this today… And supposedly anyone who could have been affected has been contacted… and we weren’t)

Quick Updates 5-22

       Well, we never heard back from the Job so we are trusting that it is God's will for Jonathan to stick about and take care of me and Evalyn some more. I'm defiantly not recovered enough be take care of Evalyn all day byself or even with a sitter for 4 hours.
         On Friday, at Emory, Dr. Khoury said that I 'm doing great. I lowered the predizone (steroids) and the anti-rejection medication. Yesterday, I started to run a fever but not high enough to come in the hospital. I called alway to let them know and that I know it was the GVHD because the rash started coming back as soon as I lowered the medication. I don't really want to go all the way to Emory for IV antibiotics and steroids. I'm just so tired. So I'm trying to get that set up just in case. This morning I reached the magic number but only once, so I'm holding out.

Graduation and a Job Interview- NEED PRAYERS FIND OUT TOMORROW

           
           YES!!!! Jonathan graduated last Sat with a BAA in Accounting from one of the most difficult accounting programs in the country. We did not find out he was defiantly graduation until 9:30am on Sat and graduation was at 2pm. No one was able to come to the graduation since we didn't really but he did get to drive the Cadillac, my granddads. He said that he was the last one so he got a huge applause while he was on stage.  God likes to keep us on the edge of our seats! We were both crying, well mostly me, and praising the Lord. The Lord had given us total piece about if he didn't graduate and needed one more class, it would be fine, after all we have been through, I think we can trust the Lord with that! But..... he did graduation.... let me brag.
               My husband has had cancer too, no not in his body, but in the body of his beloved. Watching someone you love go through so much pain and suffering and keeping up with everything he had to keep up with was truly the grace and mercy of God molding us into his image one chip at a time. Just an over view, Starting Nov. 1st, I was sent to Emory via ambulance and said for 3 weeks, diagnosis with acute lymphoblastic leukemia, told I would have to find a donor and have a successful bone marrow transplant to live long term, that I would be hospitalized for chemo and lumbar punctures 5-6 days out of every 21 until the transplant., while I was almost done working to put Jonathan through school and he had one semester left. (which god had told us to do 2 years ago) Jonathan had to continue going to classes and luckily I had sitters lined up because I had just returned to work full time in Oct, which I didn't finish out that month due to the pain. I remember clearly a few days before Emory, I was standing at the kitchen counter with excruciating bone pain and told Jonathan that I felt like I was dieing. I was. Thank you God for the support of Family and Friends, your angles on earth. And to those that asked Jonathan how it was going from school and the support of the professors.
                Jonathan took over the household, Evalyn's schedule, the sitters schedule, the pups, and still made it to school and got through last semester.Our entire life changed where it became life threatening to leave the house due to fear of the flu. Then the medication I had, and have, to take, it's so much to keep straight. Once I got home from treatment at the hospital would be when the effects of the chemo would happen. Jonathan made me food, took care of me, and loved me through it all.
              Then it came to deciding about this last semester. Should he put it off, should be go part time, and get a part time job, would I be able to still work at all, would he need graduate to be able to get a job to take care of us, all the what if's.....   Some people thought it would be foolish for him to try and go to school full time, but we felt that the Lord had brought us through a pregnancy with cancer, delivered a healthy baby girl, and he had told us for him to go back to school in the process. We prayed and asked our small group for prayer and received confirmation in several ways that he should indeed attend the hardest thing he has ever had to do in his life. A confirmation did not come from UGA, no one takes that many accounting classes at once... it's can't be done. HEE HEE.  We obeyed the LORD. I'm so glad we did and I intend to for the rest of my life.
                So then we continued the 5 days at the hospital and 16 days home. We didn't get to see each other much while I was gone because he was so busy and I didn't want Evalyn in the Emory Lobby, I don't care how pretty it is. At home we were strained,  me being so tired, and Jonathan studying so much. Not a lot of room to work on a marriage. We found a donor and that was a big relief and found out the transplant would be a month earlier than we thought, putting more of crunch on study time and some stupid group projects. Group projects in college? Give me break. In the meantime, I'm having to go in extra for transfusions which would last forever. In the other meantime, Jonathan had promising interview after promising interview, some that spoke to him like he had the job for sure. It was disappointing to get shot down and see all the young kids that have no experience in real life, get jobs.
                I was gone for another 3 weeks for the transplant and we were barely able to communicate due to me losing my voice and being on so many meds. Total body radiation and the stronger chemo almost killed me, for real, they killed my immune system and then I was stuck in isolation in my room for 2 weeks. He came when he could to visit. When I got out, I needed almost total care, thank goodness my mom took off work to help! I was on even more meds and Jonathan would have to help me get them straight, and still does. He changes my dressing on my picc line each week. He is our medical biller and keeps up with all receipts to where we can be reimbursed. He takes all phone calls and make them to the insurance company, hospitals, and dr offices because I couldn't and sometimes still can't concentrate enough.
                  We prayed and God gave us peace. We prayed and obeyed the Lord. Why am I surprise that God came through on his promises? So at 9:30 am the joy and praise we felt is something that will leave a monument of faith building, mercy, and love.

We went to a small graduation party, it was so nice to dress up! This is Lila.

                 Then Jonathan got a job interview this last Tuesday that is a great opportunity and not in Atlanta. See I'm not recovered and having my husband go all the way don't to Atlanta and back, we would probably have to hire someone to help to supplement the sitters now. The last day to find out is tomorrow.... they would want him to start on Monday. We want God's will so please pray for that...
                  I'm so proud of Jonathan. He has so much love, compassion, integrity, and has followed the Lord through his life. He's some kinda Wonderful,  He lights up my life, What a man, Wind beneath my wings, My Inspiration,  and a lot of other song titles.

We love you,
Heather and Evalyn Rose

Medical Update 5-18

Hi Everyone,
                    I really need you to pray about this painful side effect that I guess is from the lowering of the predizone. I'm have debilitating cramps in my hands, calves, and feet worse than anything that I have experience like that. My hands will literally look like I have cerebral palsy until the cramp passes. This is making it difficult to sleep, take care of Evalyn, drive, and to work. And I really need to catch up on work.
                    Energy wise I have been ok but I'm still exhausted from this whirlwind of this past weekend. I pushed myself this weekend since the transplant and it ws a good thing, but there is a price for everthing! My rash is looking a lot better but my feet are always swollen like they were when I was pregnant. I call them "piggy feet". Thank goodness I bought some choco shoes for myself. They wrap around 360 degrees and I can change them based on how my feet change. I love them and they have a life time warrenty.
                      I went to my local oncologist this morning to get my levels checked but I won't get the results till tomorrow. In the meantime, I'm taking some Calcium, crying, rubbing aspercream on myself, and trying to find some magnesium spray someone told me my help.

All in all it's not the worse thing I have been through, but it is not fun.

Love, Heather
                 

What a wonderful Mother’s Day weekend…. Posted a little late

She like wearing a scarf like her Mommy.

Daddy can always make her laugh

             We have been so busy with appointments, finals, Evalyn, me getting, or trying to get, back to work, scheduling sitters, etc, I have not been able to write about how wonderful Mother’s Day weekend was! My Dad came up on Friday, which I have not seen since I was in the hospital and couldn’t even talk, my mom was already up, and Jennifer and Daniel came on Sat. My Dad put up a swing for Evalyn in the back yard and she loves it! She just laughs, especially if you act like your are going to “get her”. My Dad enjoyed fishing… not catching, but he will next time, when the fisher woman has more energy to go with him. I got one of my favorite cakes was Publix, hmmmm, and had a piece about 3pm. I don’t really believe on waiting on dessert anymore.

Watson Mill Park Cover Bridge 

Mom and Dad are really getting into hiking lately.

Corynne and I can be a little silly

I love this man

              


 Sat morning, Grandma, Grandpa, Mom, Dad, Corynne and Evalyn Rose, we all went to Watson Mill Park to see the longest cover bridge in GA, went on a short hike, had a picnic, and played on the playground. Evalyn really enjoyed sitting on the slide backwards and having the braves ball rolled down to her. On the trail, the stroller only almost went in the water (a small stream) once. We just had to retrieve the sippy cup and change drivers. Corynne found all kind of cool things: a big hairy caterpillar, the most colorful beetle in the world, and the smallest lizard I have ever seen.  It gets better, we stopped and bought fresh strawberries from Moon patch in Colbert and had some delicious homemade strawberry ice cream. On the way home, we stopped at an out of the way GA store in Colbert that has great prices on most GA items.

That night we had a great dinner that the men and Jennifer cooked, well my mom couldn’t really stay out of the kitchen either and the whole family went on a walk around the lake, even all 4 dogs. My parents have the two beagles you know. One of them, Bailey, isn’t that shaped tack in the pack, but one of the most gentle and sweetest. She will let Evalyn crawl all over her. After the walk, we played Cranium and I have not laughed that hard in 6 months. I had to go find my inhaler. You should have seen my mom trying to act out vibrating and what my sister said as she was guessing. PG-13. I was able to taste potato chips for the first time so that was really exciting. The girls were pretty behind but we caught up, but the guys still won. I blamed it on Dad trying to draw with his eyes close without knowing what he was going to draw, me laughing so hard at him, and not getting enough oxygen to my chemo brain.

Aunt Jen and Evalyn

I liked this pic

Blurry but at least we are exercising. 

Mom and her 3 children

Sun and I don't get along anymore

Playing Cranium 

                  




                  The next morning, we borrowed a neighbors screened in dock for a brunch and my mom made a yummy egg, mushrooms, veggie, casserole. It was beautiful.

Shortly after, Jonathan, Evalyn, and I got really to go to Winder to celebrate Luke’s (our cousin’s child) baby dedication and mother’s day. Luke is such a sweet baby, I didn’t get to hold him though, I just get to touch my own child at this point, but she is good enough J .  I had some great pictures to give out and Courtney let Evalyn borrow her 12-18 months clothes, they are so adorable! Evalyn couldn’t leave without a present of course; her Grandma Carol got her a ball puzzle that she really seems to like. Thanks Grandma! We just missed Grandpa Frank, he was sick L

This girl already has her Grandpa wrapped around her finger, now if we can just talk him out of that truck.

Well, I did the best I could, here we are on the dock. 

Grandma Carol, Evalyn, and her cool new toy.

The Garner Family at Luke's celebration.

Grandmother, Grandma, Momma, and Baby

Granny, Poppa, and Evalyn 

Jonathan had to study for exams the rest of the day so my mom and I watched For the Boys. I love this movie and plan to sing some of the songs in public as soon as possible. It was a perfect weekend with only a minor irritation where I had trouble getting some medication that I needed but I finally got it and the world was ok. Of course, we went to see Granny for mother's day down the street, She let me borrow the beautiful earrings and necklace I wore to the party. God is good and gave me a lot of energy to have fun and do some things that I have not been able to do in long time.

Hope you enjoy the pictures!

Emory Update May 13th, 2011 DAY 44

                      Praise the Lord! My CMV levels went down from 45,000 to 9,000,  not sure what all the numbers means but sounds good! That means the medication is working and I don’t have to be on an IV or change medications at this time. I also got moved to once a week next week. SWEET! Everything else is looking great too and there were no changes in meds at this time. The pain from coming off the prednisone has moved to more cramps in my hands, feet, and legs, but again I know this is temporary, I’m a pretty tough cookie by now. There is also some swelling in my feet still and my cheeks so don’t think I’m getting hefty, even though I am eating us out of house and home. Steroids much trick you body into thinking you eating for 3.  Pain is all relative at this point so all this temporary stuff should be a piece of cake….. that I will eat. My lungs sound great, my voice is coming back again, I’m feeling pretty good, getting into to some jeans that hasn’t fit in a while, but he did say no to sushi for now…. Win some lose some, but always push the envelope! Thanks so much for your prayers. I’m on day 44, far from the danger zone, go ahead you can sing, but moving on out, that’s a song too.

                      The best part of the day was spending time with my Poppa Bill. I don’t take my meds until late on Friday mornings because my appointments are usually at 7am and they have to check my labs without the meds sometimes….. So I’m able to drive that early in the morning. And boy did I drive…. My Poppas black, smooth, Cadillac.  I love this car. I feel like the queen of England. In fact, next time I drive, I will have to wear a vintage hat and maybe some gloves…. Yea. So I past my driving test that morning. Poppa drove on the way home and past his driving test also. We had a wonderful time talking and hearing old stories, many will be in other blogs later.  The cancer patient and the old man were a little sneaky today and didn’t tell many people that we were going together. Hee Hee. Poppa has been wanting to be a part of all this Emory stuff since the beginning, he is a Dr. ya know, and I would never let him come down there because I didn’t want him to pick up anything, but now that I’m seeing Dr. Khoury so early, there is no one there. There was a driving fluke with poppa a little while back and I hadn’t rode with him since so it was time, and it ‘s not time to take the keys away…. Right Poppa? We always like to ask for forgiveness before permission on certain matters anyway, but we didn’t ask for forgiveness. On the way back through Athens, Pop showed me houses that he had build and bricked through the 40’s-60’s and I was able to write now the addresses.

So many blessings happened today but I’m going to share them in a personal blog.

God Bless!

Love, Heather

Emory update May 11th, 2011

FYI, I Keep having to repost this blog, something is wrong with blogspot so sorry if you keep getting an email with the same blog. Hopefully they will fix the problem soon.

Hello Everyone!,

             Yes, it is 4:30 are and yes I just couldn't sleep anymore and no, I didn't want to take anymore medication. I'm just going to start my day early. The Emory appointment went well yesterday. I always consider that it goes pretty well if they don't admit my butt. Dr. Khoury took me down one less pill of steroids a day and off the cough medication, YEAAAAA! The only down side of coming off this amount of steroids is bone pain and the crashing some from not getting a daily jolt. That is why he is doing it slowly. The bone pain is manifesting itself in my knees, which he said is common in young adults coming off steroids and the pain was going to get worse before it gets better.  Basically, sometimes my knees just lock up in very bad pain and I can't get up or down.  That was good news because I was thinking that my knees were all messed up from the radiation and I was going to have to start taking some expensive supplement to build it back up. Dr. Khoury smiled and told me that now I was playing doctor. I told him there are a lot of doctors and nurses in my family and hopefully he would get to meet my grandfather soon. 

                My CMV levels were not back yet and we will find out about those early Friday morning. I usually get to Emory about 7 am on Fridays. I'm usually up anyway. On Friday we will find out if the new medication is controlling the virus. If it is it, I will stay on it for a while. If not I will change to an IV drip twice a day, which I should be able to do at home. The rests of the ifs are too ugly to mention at this point so let’s just think positive. I did get permission to go to a church service if I wore my mask and didn't set around a lot of people and I think we are going to try to go to a Rome braves game next week. I still get tired pretty easy, out of breath, and have terrible swelling in my feet. I also have good news. I have been wanting to get dressed more and seem to care more about what I look like. I think that that has a lot to do with it being warmer, you know how I like my dresses. Most people at this stage, I’m guessing are wanting their hair to come back asap. I’m telling ya, I’m in no hurry. I think I like being bald because I love hats, wigs, and scarfs so much. I never likes washing or fixing my hair. So in your prayers you don’t have to worry about hair J

                  I followed up with the Gyno today about the early menopause situation. Right now they say that my levels are off and I have a thin uterus and the levels will continue to go up. The good news is that I found out that I could one day still carry a baby using Jonathan's sperm and a donated egg, where we would actually know a lot about the donor. I don't know if that is that is the path God will have us go on but it was comforting to find out some good news! 

I'll update you on Friday!

Emory update May 11, 2011

This is my Lila wig, FYI my face is swollen from the meds, no I'm not gaining weight.

Hello Everyone!,  

             Yes, it is 4:30 am and yes I just couldn't sleep anymore and no, I didn't want to take anymore medication. I'm just going to start my day early. The Emory appointment went well yesterday. I always consider that it goes pretty well if they don't admit my butt. Dr. Khoury took me down one less pill of steroids a day and off the cough medication, YEAAAAA! The only down side of coming off this amount of steroids is bone pain and the crashing some from not getting a daily jolt. That is why he is doing it slowly. The bone pain is manifesting itself in my knees, which he said is common in young adults coming off steroids and the pain was going to get worse before it gets better.  Basically, sometimes my knees just lock up in very bad pain and I can't get up or down.  That was good news because I was thinking that my knees were all messed up from the radiation and I was going to have to start taking some expensive supplement to build it back up. Dr. Khoury smiled and told me that now I was playing doctor. I told him there are a lot of doctors and nurses in my family and hopefully he would get to meet my grandfather soon. 

                My CMV levels were not back yet and we will find out about those early Friday morning. I usually get to Emory about 7 am on Fridays. I'm usually up anyway. On Friday we will find out if the new medication is controlling the virus. If it is it, I will stay on it for a while. If not I will change to an IV drip twice a day, which I should be able to do at home. The rests of the ifs are too ugly to mention at this point so let’s just think positive. I did get permission to go to a church service if I wore my mask and didn't set around a lot of people and I think we are going to try to go to a Rome braves game next week. I still get tired pretty easy, out of breath, and have terrible swelling in my feet. I also have good news. I have been wanting to get dressed more and seem to care more about what I look like. I think that that has a lot to do with it being warmer, you know how I like my dresses. Most people at this stage, I’m guessing are wanting their hair to come back asap. I’m telling ya, I’m in no hurry. I think I like being bald because I love hats, wigs, and scarfs so much. I never likes washing or fixing my hair. So in your prayers you don’t have to worry about hair J

                  I followed up with the Gyno today about the early menopause situation. Right now they say that my levels are off and I have a thin uterus and the levels will continue to go up. The good news is that I found out that I could one day still carry a baby using Jonathan's sperm and a donated egg, where we would actually know a lot about the donor. I don't know if that is that is the path God will have us go on but it was comforting to find out some good news! 

I'll update you on Friday!

Our Beloved Nanny on Mother’s Day

In honor of Nanny, I  wore one of her dresses, In honor of my Granny, I wore a wig. 

                                                         

Today is difficult for most in our family, especially the children of my late Nanny. I wanted to share a special blog that I have said I would do for a while.  A lot of it I said at the funeral but wanted to share it today.

                     Nanny, called Wayna Mae by some, was born in the mountains of North Carolina. I think that it is important to note what it was like when she grew up and what her life was like because there are so few people that we personally know left from this generation. As we all know, Nanny’s mother, Coleta passed away when she was three years old, and Nanny only met her father a few times in her life. Nanny was raised by her grandparents, Inez and Hector Jenkins.  I always admired Nanny for her attitude of forgiveness towards her father and her gratefulness for the family that she had. Nanny wrote in a journal that we worked on that she grew up with no electricity and had no running water, most of us have forgotten what it’s like to really go  camping let alone turn off our cellphones. She said that it was really cold in their house in the winter but she shared a bed with all her sisters so they managed to stay warm.

                    I can’t count how many times we have all heard Nanny say “ it doesn't matter who gives birth to you, a mother is someone who raises you and takes care of you.”  She knew that better than anyone. Family has always been very important to Nanny and this is how she was raised. I love hearing the stories of all the kids cleaning up after dinner. Nanny said that some would be washing dishes, someone would play the guitar, and everyone would be singing. Nanny and her siblings, who are mostly her aunts and uncles but considers her a sister, worked very hard along side their parents, tending to the garden and taking care of the animals. The only thing they had to buy was flour and sugar, and the occasional treat from the general store across the street. They didn’t just work though, they had a lot of fun.

              Nanny wrote about sledding down the hills on tobacco sleds, you’ll have to google that one, playing football, playing music, and visiting with friends. Nanny’s favorite sport to play was basketball and she was on the team throughout her school years. Church and God were an important part to Nanny’s family growing up as well as hard work, discipline, and self control. Something I love about Nanny is how much she loves everyone and wants to help anyone in need. Nanny remembered birthdays, but wouldn’t wait till then to give you a call and tell you that she loved you and that she was proud of you. Nanny always seemed to see the best in people and always hoped for the best.  I feel that if Nanny was able to tell us a few things right now they would include these things: don’t be afraid of hard work, most things worthwhile do not come easy, don’t start smoking and if you do, quit before what happened to me, happens to you, stay away from too much alcohol, you know that runs in our family and can ruin your life, be thankful for your life and where you are at in it, look for the good in every situation, love your family, hold them close, forgive,  pick up the phone, go out of your way to stay connected to extended family because family is important. Family is more important than a T.V. program, a job we are too busy with, or the little things that keep us so busy. At the end of our lives we will never say  “ I should have caught that episode, or been a better employee."  And most of all, Love the Lord and seek after him.  These last few years have been rough for Nanny and for those of us or watched her slowly become less herself. I think that the whole family agrees with me in thanking my mom and dad for everything they have done for Nanny these past few years.

                   Lets try to remember Nanny’s laugh, her banana pudding, her singing “hit the road jack”, and smiling and saying “Whew” when a grandchild did something cute, the trips to North Carolina, the crazy loud Christmas’s,  us grandchildren always being able to visit at anytime and have a bed, love, and  be able to be ourselves. I think that Nanny loves all of us very much and although she will be missed, I’m glad that she is no longer in pain. Nanny and I talked about this before, and she said that she believed that Jesus was her savior and that she would be joining him in heaven one day.  I believe that her and Papa Jack are together with Jesus now and they are pain free and happy. I know that I will see them again, and I hope to see you there also.

WE LOVE YOU NANNY AND MISS YOU. TIME IS NOTHING, WE WILL BE TOGETHER SOON.

1.    
     Blessed assurance, Jesus is mine!
Oh, what a foretaste of glory divine!
Heir of salvation, purchase of God,
Born of His Spirit, washed in His blood.

o    Refrain:
This is my story, this is my song,
Praising my Savior all the day long;
This is my story, this is my song,
Praising my Savior all the day long.

2.    Perfect submission, perfect delight,
Visions of rapture now burst on my sight;
Angels, descending, bring from above
Echoes of mercy, whispers of love.

3.    Perfect submission, all is at rest,
I in my Savior am happy and blest,
Watching and waiting, looking above,
Filled with His goodness, lost in His love.

This week in pics and blogs

Our trip to Toys r Us was so fun. We found some needed  items for safety , she ended up with this hat she wore the whole time, and best of all: a crazy deal on organic baby food.. Oh and a braves ball :)  It got a lot of "why is she wearing a mask?" looks from kids, so I just took my hat off and let them see that I was bald too. 

                       I know you have heard me say this, but this chemo thing is real. If I'm every just looking at you blankly and there are other back ground noises, you have probably lost me. Also, if I ever say " I'm out of words" I just cant talk anymore, period. My general math skills and memorization skills have suffered but somehow I still remember a lot of phone numbers. Audible learning for me right now is not happening. Poor Jonathan gets frustrated with me somethings, with something that is so simple and I just can't process the info, I have to see and do it, which has always been the best way for me anyway. So I say that to say... the pics or events may not have happened on the day that I remember. I thought that Wed was Tues all day this week. I find myself saying "I don't know" a lot lately, which is very strange to me, because then I would have to find out.... I don't care to know everything the way I did before. I just trying to remember what I'm doing now.

We like to have a lot of fun around the farm. We briefly went to a luncheon  for Mr. Frank's birthday. I didn't get to eat due to the crowd and had to keep my mask on for the whole time, but I took some food home. I did decide that my present to Mr. Frank was a song... since I'm just getting my voice back. I put on my Marilyn wig and sang him the sexy slow "Happy Birthday" that she sang to JFK. I didn't even have to pretend I was on a lot of medication. Everyone thought it was great, wish I would have got a video. 

Being a good girl at the club house. 

This girl likes to be upside down so that is why everyone is smiling in the pic. Then I went home and took a nap. 

               Some good changes in my life over the last week is that I've been getting up and hour earlier than Evalyn, having devotion and then exercising or doing something else like getting all my med stuff ready for the morning. I have always found it hard to find time to do a "quiet time". I'm reading a great little devotional that Mirka gave me called  "Come away with me, Beloved" by Frances J. Roberts. I like it because it is short but deep and then  I read more verses and make notes. One of the quotes that a really touched me this week was "Rest in me, I shall bring to pass My perfect will in your life, as you believe and live in faith." WOW. This chemo brain is good for one reason, things I knew about bible history and verses I knew a lot are gone, so I can't walk around anymore thinking "I already know that." It has been a joy to rediscover the love of the Lord and delight in reading his word. Now what is funny is trying to memorize some short verses. I feel like Barney Fife when he is always trying to repeat things that Andy says but never gets it right. Ha ha
                Another positive, I actually put this on facebook, that since I will have sensitive skin for the rest of my life and can only use a few different things, no one can get me bath and lotion stuff for presents. Not that I hated them before, they just always seemed to pile up. I've never been a big take-a-shower-every-day girl, maybe everyone thought I stunk. Big hats, sunglasses, parasols, pretty gloves, etc will all just be me.... sounds fun. Now to find some vintage summer gloves to wear with a dress.......speaking of.... I finally used my gift card to pinupgirlclothing and got the best dress for the big party on the July 16... boy, I've got to get on sending out those invitations. I also got a some crab earrings. This was a Christmas present from my mom that I had to end up sending back. It was so much trouble to use my store credit I got free overnight shipping. Yea... I'm done with the internet shopping, I'm about to sell five things on craiglist and ebay, even for other people. Any one need an organ?

We got remission to go out to eat during a non busy time. We are all trying to put more clothes on and less PJ's on around here.

We went to Casa Mia, one of our favorite places. She ate of a plate like a big girl and had Cevehie,  avocados, and pretty much what every we ate. She was such a big girl an was smiling at everyone. In face, she looked disappointment if each person didn't stop at the table and admire that she didn't have a sleep and play on and had such good table manners. 

We had a great time, first time out as a family in forever. 

               

Friday Emory appt. CMV go away

I think that this was Wed. It was a long Emory day, I came home a crashed  in bed. Our friend, and one of our sitters (not sick!!!)  After dinner, I didn't move, I just laid on the soft cushions Grandma Judy nake fore us and Michele got her ready for bed, fed her and put her to bed. It was great to see her. 

This week has been a crazy world wind of trying to start back work, a dealth, a surprise trip to Emory. Just a quick note to update those of you that are reading. My CMV levels are still going up so the virus is spreading. It's scary stuff, but there is a 90% success rate that the meds should work. I've made it this far!  Luckily, I do not have to start IV meds at first, they now have a pill. Seems like that that could have been updated in the BMT handbook that they gave to me 3 weeks ago so that I wasn't freaking out so much! I was suppose to start the medication yesterday but we are having trouble getting it due to the rarity of it, lack of communication between Emory, insurance companies, and pharmacy ( I try to keep everyone together, really I do). I don't feel very well and really need to get the medication. I was so upset at one point yesterday because Emory said that if we couldn't get it, I would have to come in Sat for IV, twice, each day, until it gets taken care of. Well I'm not one for holidays but when you are as isolated as I am, not getting to do something even small and really upset you because it feels so good to just be part of something besides cancer, medication  sickness, etc, etc. Like, I have driven a couple of times, and that felt great! I still not driving with Evalyn in the car though. Supposedly, I'm suppose to get overnighted the medication in the morning to my home, however, if it doesn't come in time, I have two choices.... go get the IV..... or pay our of pocket for a dose at some pharmacy the hospital found. My insurance wouldn't pay because it has already been charged with the shipment that is suppose to come in. Talk about stress. I just cried at the kitchen table. See, my family is all coming up this weekend. My mom of course has been here, but I haven't seen my Dad in forever, my sister, Jen and Dan are coming too. We are going to have dinner, go to a park,and play some games. I haven't had family time in so long. In the hospital I couldn't even talk to them because I didn't have a voice.
Now, maybe I  can write about the great things that have happened this week.....

Mom and I brought the color out for spring for out trip to Emory on Friday. It is great that it is getting  warmer so I can dress in the clothes I like... Notice the pink pants mom has on... very stylist. 

Urgent prayers needed- UPDATE

10pm- Update for now... I'm home, thank goodness. They did some more test and are going to decide the next step on Friday morning. Very glad to be home and not be be admitted!

URGENT PRAYERS NEEDED: I got a call from Emory that now I have to come up there due to a positive result of a virus (CMV) that can be very dangerous to a BMT person. Most people have this virus and carry it fine. It was nothing that I did or did not do, i had already tested positive before the BMT but it could have stayed away.It's my own body doing this.  This is very serious and is 1 of the leading causes of Major complications and I'm in the 1st stage of the GVHD that they have been able to control with medication... too much medication. The first step will be to be on IV medications twice a day for 3-4 weeks. Please pray that I can get home health, use my mom since she is a nurse, so that I can stay at home and not be split from my family. Jonathan has final exams this week for graduation, please pray that he can concentrate through all of this. Please pray that I do what my devotional said this morning and trust the Lord and do not fear.
Thanks, Love Heather

Janet Pope RIP

I have so many wonder stories and pictures to show you from my first semi weekend free..... they are funny and exciting.
However, My heart is so so heavy. I have never cried so hard where I was going to throw up. Jonathan as here and was a wonderful comfort.  My fellow BMT lady Janet Pope passed away yesterday. She has two sons, one is only 2 months older than Evalyn. I'm glad the Lord let me to go see her on Friday, suit up, and prayer over her.... all without asking Dr. K. Janet and Mark were going to get married soon. I could tell how much they were really in love.
Mark and Janet encouraged me as I carried on with my journey.
I pray for peace for the family an that Janet is up in heaven with the Lord. Heavy Heavy heart my friends. Please pray for them and their two sons.