What October 1st Means to Me...

I am beginning this week’s blog post kind of early… because I really doubt that I will have much time next week. Plus, this blog post is going to take a little more thought.

Last year, on October 1^st, I remember the day like it was yesterday. I was rocking my sweet newborn baby- she was about 3 weeks old. Cleaning house, trying to figure out when I could fit in a shower, Ashlynn was at school, Avery at the babysitter’s house, and the phone rings. The name that appears on the phone is “Dad”. I pushed ignore, thinking that it was my usual morning call that I received about 5 times a week. Notice, I already felt some sort of guilt because I hadn’t answered the phone the past few days, because, I was merely “to busy”. A term,  that I regretfully, still use, quite often. Anyway, soon after the missed call, I receive a phone call from my Aunt, whom, I hardly ever hear from. The phone call that all daughters dread. My father had passed away in the early morning, no cause known. Daniel was working that fall day. I called him and within hours, we were on our way to Texas to “take care of things”. You would have to know the relationship that I had with my father, to completely understand. Another story.

On October 1, 2005 (six years ago), I said “I do”, in Jackson, Mo. Oh my, was it ever hot that day! Today, September 25, 2011 (6 days short of our anniversary), I still say “I STILL DO. FOR ALWAYS”.  Sure there are fancier dresses, and details that I would change. None that include our wedding party- because those guys and gals- still rock! But the promise that we made to each other that day, still hasn’t changed. That is the part, that is important.

Six years ago, I thought that we were invincible, that we would be destined to be together, forever. Today, I know that is very much the truth. On October 1, 2005, I began the best part of the rest of my life, and we are enjoying the journey together. The truth is, that young girl that looked into the brown eyes of her husband, and said “in sickness and in health, I do”, is still here. I’ll always be. Fancy or not. All fixed up, or not. That love that I have for him, is a pure as it was on that very day.

Sure, I wish the circumstances were different, and as much as I try to not think about them, they are still there.

When I think of SWEET Mia, I think of the word “Miracle”. I always wanted a big family, I always pictured a whole bunch of kids (my kids), playing in the yard outside. When Daniel and I got married, I nearly had to have him sign in blood, that he was willing to give me the family I dreamed of.  I wanted so dearly to have the 3^rd baby, and after much consideration, we conceived (I have no problems getting pregnant, for the record).  Daniel wanted to wait a year later (which would have been this year). Anyway, early in my pregnancy, we came very close to losing her. At our 20 week ultrasound, something terrible appeared to be wrong with her heart. Guess what, I delivered a very healthy, big, baby girl. This year, given the circumstances, we were not able to have her 1^st birthday party on or near her birthday. This year, it just so happened that we are celebrating her birthday on… you guessed it, October 1.

This weekend, gave me time to breathe. Which, I needed. That rash that I spoke about… it is GVHD. Stage 1, they say. Daniel is headed back in the morning. He will have the rash evaluated. It covers his entire torso, and back. He says that it isn’t bothersome, although, it looks like it is. We have been applying a topical steroid to the area twice daily. Tomorrow, we will see what the next step looks like. He could possibly be hospitalized, although, I am thinking positive, and that he will not need to be. It hasn’t spread to any other locations-which is a good thing. This rash could be good. Having GVHD means that if there are any residual cells, the donor cells should be recognizing that they are “bad” and attacking them. His liver issues- were most likely caused by GVHD, now that we have a rash to prove it. There is still no set date as to when he may be home for good.

I am managing. I am balancing. I am making bad choices. I am making good choices. Balance is hard, but I am trying. Here is to a good week- y’all. Oh yeah, those tests that I had last week- that “fried” my brain- passed both of them- with flying colors. XOXO Kristin

One More Week Down...

 Disclaimer: This post has been written on what I would describe as one of my worst days- not the worst, but one of the worst.

Fall begins tomorrow! I absolutely love fall. It is my most absolute, favorite time of the year. Fall screams kids playing outside, wonderful smells outside and inside, family, love, because, the holidays are right around the corner. Labor Day usually signifies the right to break out the pumpkins and the fall décor. You know what? I have not a pumpkin in sight. Not a one! I literally, have been so wrapped up in school, that I have not even thought about one measly pumpkin. Hopefully, this weekend brings some change at the Presley house.

Mia turned one several weeks ago. I have had her party invitations and décor since- mid August. Her birthday party is next weekend and I have yet to fill out one invitation. Hoping that I can make that happen tonight.

School… where do I begin, without getting frustrated? I have met a lot of great people in school. They are good people. People that make you feel good, when you feel like “crap”. This week has been physically and emotionally exhausting. Two exams, one extremely important clinic check-off… I am so ready to end this day! While I am striving to be a good student, there are several other things constantly running through my head. With all of the studying and extra time spent in the lab, the truth in the matter is that I feel like there is so much that I am missing out on- especially, with my children.  It’s the everyday things that I struggle with. The little things… that make up the BIG things.  There is only me, and I can only stretch myself so far.

Each week, I see myself  getting more tired, not so happy all of the time. I know that I have so much to be thankful for, and that at the moment, I am probably being irrational. Hoping that next week, brings happiness back into my life- just sayin!

Please do not think that I am a negative, depressed person, because I am not. I see the world as a beautiful thing and I see things very differently. It has been an entirely long week…

You know last week my blog entry stated that is most certainly, looked like Daniel would still be residing in St.Louis for the time being. Well, that is exactly what is going to happen! No end in sight! His laboratory values (liver) are still slowly coming down. Not nearly at the pace that they are hoping for. Bi-weekly, Daniel will be having a pint of blood drawn off of him, until the numbers are at a good value. Besides that issue, he seems to be doing very good. No fevers.  He has developed a skin rash. This could be due to one of two scenarios: 1. Graft Versus Host Disease (GVHD), or a reaction to the antibiotic that he was placed on for his cough. He will see the Nurse Practitioner in the morning. He was supposed to be home the entire weekend and part of the week.  

Thanks for letting me rationalize with you guys! Please keep following, as I do make this one of my “weekly” assignments! XOXO Kristin

Please Tell Me, You Have Days Like Mine

Plans scare me. Right now, I am a better email/text friend, than I am a real friend. Sad! I think that I need to hide less in the technology land, and more in the floor playing with my kids. However, the ding of a text message, or the facebook chat, pretty much is my way of being social these days.

I have always been a fearless, ready for a challenge, kind of gal. One of my pitfalls was relying on Daniel. What his diagnosis has taught me, it to be strong and capable, and to rely less on other people. That, is something that I continue to work on, daily.

This is how my week has gone: CRAZY! It seems like I am not able to catch a breath. My days go a little something like this: school, study, kids, dinner, baths, study. Sleep (for very few hours). I can’t catch a break- to even breathe. When Daniel is home, the schedule is very much the same. Screaming baby… all of the time.  I feel horrible, because I hope for Daniel to help me out on the weekends, just a little. I think that I truly take for granted the fact that I am the one that gets to be home with my children, every single night, and he is the one that doesn’t have that very luxury. Practically raising 3 children on your own, is tough, my friends. I never thought that I would ever be doing this, especially, at 29 years old. I look forward to having Daniel back home. Not only helping with our children, but more so, having my partner home. I dread going to bed at night, knowing that he isn’t sleeping next to me. Sure, we talk on the phone, but it isn’t the same. Even though we are married, I feel so alone. I think that it is finally taking a toll on me.  Last night, I washed my WHITE uniforms, dried them, with red Chap Stick. 6 washes later, they were acceptable to wear to school. It is stuff like that, that absolutely makes me want to scream.

Numbness and sadness.

You see, I have never been one to give up, and I refuse to let these little things in life, make me give up.

I’m looking forward to fall break. It is about a month away. There are windows that need to be cleaned, closets to be cleaned out, and other things that have been completely put on the back burner that need to be done.

Anyway, on to Daniel.  We are still dealing with the GVHD issues. His liver enzymes are not lowered to the comfortable point. He had another change in prescription, hoping that this will do the trick. Lab tests are scheduled in the morning. Hoping, he comes home this weekend. He sees his physician on Monday. Some possibilities that may occur, if the liver enzymes do not show improvement include: Liver biopsy, or drawing a good amount of blood out of his body (the idea is that due to all of the blood transfusions, there is an enormous amount of iron in his system, causing the problem).  I guess that we will see. My calculations pointed this week to be “coming home week” for him. Big let down, I guess. It sure doesn’t seem like it will be happening soon.

Please continue to offer your prayers to him, us… We sincerely appreciate every one of them. As I have mentioned before- Chin Up Kristin, chin up! XOXO Kristin

A First Birthday!

Mia turns one!

This morning I walked into her room, watched her as she flipped and flopped until she woke herself up. I watched her for a few minutes, thinking about how she was already one year old. I remember this day last year. I sat in her room, dreaming about the little soul that I was fixing to hold. Wondering what she would look like, how she would act, and dreaming about watching her in crib, as she slept. That, is the next best thing to heaven- in my eyes!

I picked her out of her crib, and she giggled. She is seriously, the happiest baby in the mornings! I like to describe her as “sweet as pie” (unless she is screaming- which, she is pretty good at). I tried to dress her, but she thinks that it is really funny to run from me. A far cry from the little 8 lbs, 3 oz baby girl that I was holding 365 days ago.

One year has passed, in the blink of an eye.

Sunday, we celebrated. We ate cake, drug balloons around the house, opened presents, adored SWEET Mia, really no different than any other day- except for the cake! You only turn one- Once!

Daniel left yesterday. It sure was nice to have him at home. Especially, since he felt rather good. It was an excellent weekend, had by all! After receiving wonderful news in regards to his bone marrow biopsy, the mood around the house, sure was a whole lot brighter. Most of y’all are aware, but for those who are not my friend via facebook, the news goes a little something like this: his biopsy indicated that he is disease free, and is 100% donor cells. The over achiever in me, aims for 100%, so this was good news. Other news, is that his platelet levels dropped, and liver enzymes increased. His physician, seems to think that this could be the Graft Versus Host Disease (GVHD) setting in. His meds have been adjusted to fight the GVHD. On another note, while that may seem like pitfall, it can also be a good thing. Having GVHD means that if there are any residual cells left in his marrow, the new cells will kill them off. It is good to have some GVHD, but you do not want too much of it.  We are hoping that he can catch another weekend home… this weekend.

There is much celebration waiting to take place. Until another day… XOXO Kristin Presley