Christmas update

      Well we forgot to write on the blog that I had to go into the hospital Friday for fever and such.... and I'm back on steriods for the moment. Luckily, and with lots of prayers, I was released on Christmas Eve. Our family is not together yet, because Michael and the girls have Chloe dog, but I know she is having a good time. I'm feeling a lot better, but they never figured out what was wrong... they think I might have had a reaction.... to something. Nuf bout that. Except I lost 4 lbs this week... just to find out today that I weigh the same as my 6'2" brother.
         Evalyn was in awe this morning and just pointed at her Santa presents, then wanted all the plastic off each one so she could play with her tutu's, teapot set, and wooden food. I didn't see her leap for the kid broom, but she does so a knack for picking up lint and putting it in the trash. Daneil got a workout machine, Dad got his second pair of Coca Cola pj's, I got an awesome sisters ring that made me cry, Jen got a kick ass earring holder from yours truly, Jonathan got beer mugs, dogs got bones and toys and Mom got just what she wanted.... all of us together. We caught Evalyn kissing Santa Claus.

Thank you so much for your prayers.

Love, Heather

        
      

News for Thursday

Hey. This is Jonathan. Heather is in bed, so I am writing for her.

I took Heather to Emory for a few hours yesterday. She had a fever, is in some decent pain, and has been coughing for days.  She called the nurse/dr hotline, and they wanted her to come in... so I came home from work and took her down there to be checked out.  (Thank you Bruce and Faye for watching our little gal).

Well, Dr. Khoury saw her and then sent her downstairs for a few hours of IV antibiotics. He also prescribed her a new med (an antibiotic too, I think... but honestly, I could totally be wrong... what do I know, I'm just the Kroger Pharmacy frequent shopper).

I am writing because I want to ask all of you out there to pray.  Something like Bronchitis or Pneumonia could be fatal to my bride.... so please pray that whatever is going on isn't something that bad... and that my favorite woman will not be in such pain.  The Doc must think its not too serious or he wouldn't have let us come home... but crazier things have happened... so please pray.  And if you're not the praying type, we'll take cash instead. Just kidding... well, kinda...

Adios, and thanks for reading. And for praying.

Medical update 12/20/11

               One of my main goals this week was to only go to Emory once this week, and so far it looks like I may meet that goal. Whoa... dream big! (line from the movie Juno) Anyway, it that goal and other rickamaroo (don't know how to spell that) caused a 10 hour day at Emory. Marlin, one of Jonathan's college roommates, was nice enough to get up at 4:30 am yesterday and take me to Emory and my father in law, Frank, spend 4 hours with me waiting on the medication and drove me all the way back to Athens. I have one more day of IV chemo next Tuesday and then we will start the Donar Lymphocite Infusion in Jan. I received the oral chemo, ponatinib, from the FDA yesterday and didn't realize how much Dr. Khoury and his staff had to do to get me on the medication that I need.
        At this point there is no effective treatment for the type of mutation that I have. This medication has been through trials at several places but is not approved yet by the FDA. The research coordinator said that getting me this medication was the same amount of work as opening a whole need trial. The ethics group at Emory is meeting about me tomorrow and could say no to me taking the medication at all. The FDA has approved me taking it though. It seems that most people have responded well to the medication. Side effect could be anything so just pray that I don't have any!
        Great news, I'm off the steroids! Not meaning that something couldn't happen where I have to get back on them, but Gosh I hope not! I wan't to get off all this medication and lose some weight! I'm not feeling too well today. I can't seem to sleep, I have a cough, and my body is starting to hurt from the chemo. If it wasn't for Evalyn I would probably not move.
         Lets talk about life and death. Jonathan and I talk about it quite a bit in small amounts such as me saying "if something happens to me, I want you to find Evalyn a new Mommy" and we talk about my wishes and what life would look like without me. "Don't think that way" you may say, but hey, this is real life and maybe people don't talk about it enough and then the family is stuck with making all the decisions. I'm not scared of dying. I'm scared of hurting the people that love me. I'm scared of suffering. As I rocked Evalyn before her nap today, I started crying and praying that God would spare my life so I could be this wonderful little girls mommy. It's sad to think about and it's a reality that most people take for granted, that we don't know when our time will be up. I don't know what lies ahead if this next step doesn't work for me. I haven't asked that question yet. As my neighbor Eva says.... " We are just gonna live until we die."
True, Eva, True.

Love,
Heather
       

Puppy Love

It's no secret this girl loves dogs. She'll give a dog a kiss before her Mommy and Daddy!

Evalyn's Boston terrier puppy from Grandma Carol. 

All I want for Christmas is Less Fat

       Hello all! This week has been really hard so far but is getting better. After chemo on Monday, I started to hurt all over and it when on into the night where I tossed and turned and ended up taking pain medication in the middle of the night. It didn't help. I got up, still hurting, and took Evalyn to my grandparents, hoping the breakfast would make us feel better. It did. I ended up with a little fever and a head that felt like it was going to burst so then I took migrine medicine. I called Jonathan and had him come home from work early so that he would be here when Evalyn got up from her nap because I just felt too bad. Finally, that night I started to feel better and I stayed up way too late because I wanted to make sure I was really tired so I wouldn't toss and turn. I woke up tired but feeling a lot better. I hope to be able to go to yoga tomorrow since Grandma Judy is coming.
           The FDA has not approved the medication yet that I need, so we are still waiting for them to sign a piece of paper saying I can go ahead and get it. I'm still not sure about the infusions and if this is suppose to be a cure or if I will be on cancer maintaince for the rest of my life. Right now, I really want to lose this weight that I gained on the steriods but energy to exercise while taking care of Evalyn is really hard. I haven't had much of an appitite lately so you would think I would lose weight that way. Gosh I hope the radiation hasn't messed up my tyroid and I'm destained to be fat forever!! I still have the rash but it seems to be getting better.
           Ahhh, Christimas time. My least favorite time of year.... why? Well, between Jonathan and I we have five different families, everyone is stressed out about presents and what to get people, and people drive drunk more. If I could, I would fly my family to Costa Rica and we would just spend time together. Isn't that the best gift someone can give, time? We seem to have more of a balance now and try to see all the family throughout the year so we don't have to feel guilty for missing out on a big get together. As for gifts this year, I've made some, given some to people already, gave out picures, and well, every one else is out of luck I guess. I prefer to get people something when I see and don't like to wait to give it to ya. Plus, I really don't like getting stuff I don't need, do you?
            I did end up going to yoga today and it made me feel a lot better. I also had Jonathan's gym membership transferred to me and the lady gave me free child care! Jonathan was unable to really use it since getting his full time job and having to take care of me so much. She had to be on steroids for a long time and said she worked hard to loose the weight. Please pray that neither Evalyn or I get sick from bringing at the gym. I have to get this weight off and get back into my favorite clothes. I know it is going to hard getting Evalyn ready and actually getting there, but I know I will feel better if I do it. I also got the number of a hair dresser that is used to dealing with hair that grows back different... so maybe he can help me have a style or something.  I don't even have a natural part anymore and my crown have moved. So weird!

Evalyn's Laughter, Dance, and Dog Responsibilities

Medical update 12/8

I don't know what is it about chemo, but it seems that I can't concentrate to read and getting on the computer is a chore. I wish I could be part of a study about chemo brain, I think they would find that my IQ is decreasing. The chemo went ok on Monday except that it took 3 hours to get the 3 hour bad started due to someone not turning in the orders. I didn't have any reactions, I'm  just very tired but when I sleep it still seems like it's not enough. I had to go back to Emory on Wed and I thought I would be getting the new oral medication from the FDA, but Dr. Khoury said they were having problems getting it and it would hopefully be in next week. Between  riding to Emory, going to appointments, scheduling rides and sitters.... I'm wore out. They did decrease my steroid to every other day which is making me more tired but hopefully I can start losing some weight if I have the energy to move. The dermatologist thinks that the red patches is psoriasis and gave me some cream to try.... surprise. They said they can't do anything about the stretch marks and the PA thought they may be the worse she has ever seen. I also asked Dr. Khoury about who else he is treating with my disease and all is weird mutations with this chemo, pill, and booster shots. Ummmm..... I'm it, the only one. So I'm kinda feeling lonely here and that we are grasping at straws. Thank goodness for all my friends and family that are helping with rides and with Evalyn. I don't have too much to say right now and please excuse me for not returning many calls this week. I just don't have many words right now.