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

To Give A Compliment...

When I think of my childhood, I think about the friends that I had through the years. I have always surrounded myself with a “circle” of friends. Sure, that “circle” has changed through the years, mostly, because I moved from Houston Texas, to Advance Missouri. But, my “circle” of friends, since about 1996, still remains the same as it did way back then. It seems like it shouldn’t be that long ago. Moving on to my college years, I lived at home with my mother. In college, I never really met many people outside of the crowd that happened to be in most of my classes. I wasn’t into the sorority thing. I pretty well, hung close to home. Never, did I ever, live away from home, until I got married. And, I wouldn’t change a thing.

Moving on to the present day. I can honestly say that the best friend, that I had in 1994, Stephanie, is still my best friend. If you were to type in “best” friend into an internet search engine, you should see a picture of this chick’s beautiful face. She truly defines “best” in my eyes. She was there for me, when I gave birth to each of my children, and genuinely, has a love for my children, as if they were her own. That is pretty important. However, I like to use “best” loosely because, I have many best friends… of all different ages and personalities. I feel that it is important to surround yourself with people who make you genuinely happy. My friends, make me happy. Most of them women. These ladies, have taught me how to be a friend, offered parenting advice, given me much wisdom and advice, been my travel partners, pushed me to do my very best, at everything, and most of all, each and every one of them, has been there for me when I needed them the most. To have your friends tell you that everything is going to be okay, when it seems that your world has completely fallen apart, means a lot!

Lately, I may not have been the best friend, that I can be. I blame it on life’s circumstances, and it isn’t an excuse. I know this. One thing that I have always strived for, is being a good friend.

Another thing that I strive for, is to be genuine to all people. I like to give everyone a chance. I want to see everyone excel at what they do. I like to offer any advice to them that I can, if they shall want to receive it. I like to compliment people, tell them what they are doing is great! I like to make people feel good about themselves. And, I honestly, think that I do a pretty darn good job at it.

To be on the receiving end, is usually not the scenario for me. Especially, when lately, I feel like I am constantly being criticized for not be the best wife, mother, etc. The list could really go on. Today, I was complimented. I am not going to say by who, or where, because it really is irrelevant. But that compliment, made a world of difference in the attitude that I have held towards myself, in the last few days. So, my challenge for you is to, give someone a compliment. You never know what their life circumstances are at the time, and you may never know the outcome of the compliment, but, know that it is worth every bit of energy that you put into it.

You all know, by now, that I always have to blog about something that is going on in my/ our lives. I positively, am sure that most only read this little blog for the updates on Daniel. Lack of time, has forced me to drastically cut back on my blogging. Truth be know, there hasn’t been much change, or I would have informed you some way, or another. So, here it goes. Daniel had an appointment on Monday, with his “team”. They really can’t offer much information, because, it is pretty early in the game. He is having a slight issue with his blood pressure being low. Last week, they were thinking that he may be slightly dehydrated, and so, they were providing him intravenous fluids. They decided to put him on a medication that would increase his blood pressure. It is assumed that this is likely due to the chemo, and current list of meds that he is taking. It is safe to say, that in given time, his blood pressure will return to normal. That is the hope. He is still fever- free, graft versus host, free… sigh. He had a bone marrow biopsy on Monday afternoon, and we should know the results of that, Friday. I am not sure what they expect to see. My guess is, that maybe, the donor’s cells will have engrafted. We are aware that because of him receiving actual marrow cells, that process, could take longer than normal. Actually, it could take a year to fully engraft. On a better note, if all of his lab work is good, blood pressure looks good, and he has no fevers, he should be cleared per physician’s orders, to come home for the weekend. You all have no idea how much he needs this. We need this.

We have a baby, who turns one next Wednesday. Whether he is home or not, some low-key celebration will occur. I am aware that no baby should turn one without a huge celebration. That, is in the works.

As for now, my motto for the week is “chin up, Kristin, chin up”. Good night. XOXO Kristin

When you Have Dreams as High as Mountains...

When I first started to think about committing to the RN program, I had many people close to us, questioning the rationale behind my decision. Many people wondered how I could go back to school, and leave my sick husband in St. Louis, all by himself. How could I do that? No answer seemed to be the right one. Only Daniel and I knew, that this was indeed, the right thing to do for our family. Only us. Many conversations had taken place in the prior weeks , in regards to the situation. But the truth is… for the last 6 years, I have pushed, worked at a job that I absolutely dreaded going to, daily, worked at a job that I loved, but when you have dreams as big as mountains, you simply have to pursue them.  Plus, we have had three little girls, who painfully, wondered, where in the heck their parents were. There for them via phone, and visits, here and there. For most of the last 4 months, it has been just me and the girls. I have missed a vast majority of Mia’s first year. I will admit, major milestones, such as walking, I witnessed. Daniel also witnessed the first steps. However, I knew that it was time for a change, in a big way.

So here I am. Daniel in St. Louis. Oh yeah, I am minus one child this week. Do you suppose that is making things easier? Nah… I miss her and so do her sisters! Avery stood behind with her daddy this week. This is somewhat important. He needed her, more than she needed him. She is such a daddy’s girl. Anyway, back to my story…  This last week or so has been tough. But, when you are me… you are used to juggling balls- many of them. So what is one more? I am still trying to figure out the “correct” way to study. I am convinced, that if I would have studied like this the first time around, in college, I maybe, could have graduated with a 4.0. No joke.

For many days, in the last few months., when I would close my eyes, everything would be black. Somewhere, that light that I once had in my eyes, burned out. I’m not sure when, but, it did. I have cried, oh have I cried. It is only natural. On my trips to and from the hospital, every song, made me cry. Because, all that I could think about was Daniel. Why is is that every song- has some sort of tie to him? Some days, I was better off, to not listen to the radio. My friends… good thing that they choose to answer all of my phone calls. They, are what make my drive home- simpler.

I peeked in Daniel’s closet today. I choose not to look in there. It saddens me. You all have no idea how much I miss him. I can’t wait until he comes home. But for the first time, it didn’t sadden me. All that I could think about was “geez, I need to put his clothes away, clean this up, clean that up”, because, he will be home shortly. I have never had the ‘umph” to put them away.

Sitting in class today, I was talking to one of my classmates. She was asking me about Daniel, as many of them do. She mentioned that she, one, prayed for me and my family over the weekend, and two, said “I do not know how you do everything, and still have a smile on your face”. That got me to thinking. Today, I can tell you this. If starting school has given me a little stress… I will take it. For the first time in a long time… I think that I have that sparkle. Doing something for myself, for once, has given me that sparkle. For anyone of you who know me, and I don’t mean in the virtual world, but really know me… you know what that sparkle is.  Finally, doing something for my self, because I want to, not because I need to.

As for a Daniel update. I know that maost of you are not reading these blogs because you want to hear my ramblings… you simply, want a Daniel update. Here it goes. Daniel got released last Friday, is living in St. Louis on Flyer street, near the hospital. We had a fabulous weekend. He is feeling quite well. Labs were within range today. Has a few more lab draws this week. Sees his Nurse Practitioner, this week. Is doing remarkably well. The whole Presley crew, will invade this weekend. That little house, will have an outpouring of love this weekend.

Please continue to include our family in your prayers. I don’t have to tell you how much they are helping, because, you are witnessing it before your very eyes. Over the weekend, we visited that flea market that I wrote about a few weeks ago. There, we picked up some movies for the ride home. Two Bucks, baby, gets you any new release you want- pirated, but, they still work. This week, the picks were Smurfs, and Winnie the Pooh. I didn’t watch either of them, but I could hear them. So, in closing, I want leave you with one of my very favorite quotes from Winnie the Pooh. Think about it. 

Piglet: "How do you spell love?"

Winnie the Pooh: "You don't spell it. You Feel it."

Until next time, XOXO Kristin

In the Middle of it all...

Rewind a few months back. January 2011, to be exact. Most of you fellow readers are aware that my last job- was the most rewarding, educational, I love my job, kind of job. If that makes since? However, the only doenside of the job, was that it was a state/ federal funded job. Funding was "up in the air" every year, and there is no need to specifically discuss why, as we are all aware of the current economic issues. Every single year, state and federal employees, and agencies literally, sit on pins and needles as June 30th roles around (the end of the fiscal year), as they await to see if they are employed, or no longer employed. You see, you have a general idea before that, but, nothing is for certain until the Governor signs off on the budget (for Missouri folks). Anyway, it can sometimes be worry-some, I will admit. After welcoming Mia into the world on September 7, 2010, I knew that it was time to begin exploring different options, in regards to employment. I needed something more stable. We knew that she definitely, would be the 3rd and final child before she was even concieved. My explorations, leaded me to choose a career path that had been in the back of my mind since graduating college in 2004. Has it really been that long ago? Anyway, I decided that I would buy the book that would allow me to study for the RN Entrance Exam, required to attend Three Rivers College's Nursing Program. I studied, a little. Took the exam in February, passed and applied. Before I left on my trip to New York, I knew that I had been admitted, but kept it a secret, because, I still was not 100 % certain that I would commit. It is kind of a big deal, because only 30 students are admitted per year. As we all know, Daniel was diagnosed with his life changing disease on April 30, 2011. I decided to commit to enrolling, after many long conversations with Daniel. As we all know, this decision could completely change the dynamics of our household for the next 2 years. Fast forward to Monday, August 15, 2011. First day of school. I have picked up 9 textbooks, and still lack 2, I am completely overwhelmed with information overload, and well... right now, I may have jumped off of the deep end. Yesterday, I thought that I was absolutley out of my mind. Today, is a little better. Bare with me, please?

Since being home, the girls and I have gotten into a normal routine. As normal as it can be. Getting 3 girls ready, packing bags, getting them to their desired locations for the day, going to school, feeding them, gymnastics on Monday nights, bathing them, household chores, and finding time to fit in homework has become a challenge. I have not turned on the television since last week, have not returned MANY messages, and have not been to bed before 11:30, in sometime (getting up at 5:15 to make it all happen, by the way). What I can tell you is, I am not looking for any pity. I am simply telling you, exactly how it is at our house, in this moment.

I had my first true melt-down last night on our way home froom gymnastics. The kind of melt down, that if it were to happen, should happen in private. But no, it happened in front of Ashlynn and Avery. I regret letting it happen, but honestly, I had zero control of it. It freaked the girls out, and I had to make up some sorry excuse as to why it occured. My excuse- I hit my knee and it really hurt. It was simply the best that I could come up with. I will tell you that not only did I have an exhausting day, yesterday, but, I went grocery shopping (only bought a few groceries), and left them in my car, in 90 degree weather. Completely ruined.

I am trying to tell myself- "Get it together, Kristin".

Everyday is a new day, right?

As for Daniel, he started the weekend out running a 103.5 fever. Maintained that, pretty much the whole weekend. Puny, not eating, below 200 lbs, not feeling worth a darn, saw his kids very briefly. That was his weekend. Blood cultures, chest xrays- the whole routine for a fever, took place. Ct scan, for a previous infection.... No results. Just a fever. Colon/ Rectal Specialists viewed the CT, and decided that the previous inefection, the one that kept him hospitalized the 1st time, for a week longer, has reappeared. The good thing is, they are giving him different antibiotics to help treat it, the bad thing is, they can not specialize the antibiotics, until they know the type of infection. That, my friends, can not be know until his platelet count is higher than it is, currently. They would like for the counts to come up on their own, but will increase them, by transfusion, if needed in a few days. So, he currently has low-grade fevers. Still recieving transfusions, as needed. He is beginnign to feel better, eat a little more, and the best news of all... HIS COUNTS ARE BEGINNING TO RETURN! I guess that you can tell that I am a little excited? I am headed up to visit him this weekend- Friday to be exact. No school on Friday's. I will be without children. So, if you see my mother-in-law, please offer her a pick-me-up. She has been filling in as I am absent, and will be caring for my children this weekend. It is a big job fullfilling both roles, especially, when you have household chores to complete as well.

I sincerely appreciate all of the kind words that have been sent to myself, and our family. Please continue to keep us in your prayers. Much love to all of our followers... XOXO Kristin

Maybe, I'm a Little Crazy?

1. Daniel is: doing better than expected. We were told that yesterday and today, should have been horrible for him. He should feel like he has been hit by a train, literally. Guess what? These have been some of his best days, yet! Blood counts are near his ultimate low, thus meaning, sickness is lurching around the corner. The doctor said yesterday, that Daniel was looking at 10 more days in the hospital. Much shorter than originally anticipated. His extreme sickness from the awful chemo treatment, resulted in a 12 lbs loss (35 lbs total, from day one). His appetite is beginning to be closer to the new "normal". Eating, more. Daniel is beginning to develop "bird legs". Don't tell him I said that! He is continuing to keep up with his daily walking, including flights of stairs in his routine. 

2. I leave tomorrow afternoon, to head home. I am very much looking forward to being home with the children. I miss them terribly, this time around. Leaving Daniel, doesn't seem right, either. I have to get my "act" together. I am officially becoming a college student, again, on Monday. I am trying to figure out how to be the most efficient person, mom, student, etc. In my head, I am trying to figure out how I can really make it all work (Daniel, kids, school, gymnastics, supper, house, St. Louis, ....) Am I aware that I am completely crazy, okay? Please say an extra prayer for me!

3. I met my mother-in-law at the pediatricians office on Monday. Ashlynn has a staph infection on her leg.  Great news, right?

4. Speaking of Ashlynn... That girl starts first grade on Friday! I never thought that I would be walking her to her classroom, on the first day of school, alone. Sigh....

5. Taylor Swift concert on Saturday! I bought these tickets in February, before I knew that Daniel was sick. I am planning on bringing Ashlynn and Avery up to see their dad, before the concert. Thank you Ticketmaster! I originally had tickets for Sunday. They exchanged them for me, free of charge, and replaced them with tickets to the Saturday night concert. This will be Avery's first concert. It should be fun. 

6. There are still nice caring people in this world. I have always known that, but lately, I have been proven it. One, by donor #1107-0217-2, and the many nice people that I have met. Today, while walking to the post office, I met two ladies who invited me to eat lunch with them, indulge in conversation, and take a minute "breathe". The result- a new friend. She knows who she is. And, I want to extend a very special thank you, to her and her lovely mother.

And finally,

7. Thank you for continuing to follow along. I am so humbled every time that I log on and view the number of "hits" to this little blog and how many people express to  me that they are following our story. Thank you. XOXO Kristin

{Counting Down the Hours...}

As I mentioned in my last post, the girls were in town for the past weekend. We (my mom, Ashlynn, Avery, and Mia) were at the hospital some, but for very short increments. You see, 3 children in a itty- bitty, intensive care hospital room equals complete chaos! There are far too many things for them to reek havoc on. Plus, their attention span only lasts so long. so, we had to figure out other ways to occupy them. 

Our weekend went something  like this:
Friday:
- a trip to Build A Bear (have I lost my mind?), dinner at PF Changs (love the place, but entertaining 3 children during dinner...), hospital, hotel, hospital
Saturday:
-flea  market. Funny story on this one. I heard that there was this fabulous flea market real close to the hospital. I love flea markets- I love vintage treasures, and all of the potentials that flea market goodies bring. Well, atleast, the flea markets that I frequent! When I asked one of the secretary's about this flea market... I got the answer " I could send you to the one in the "hood", but I wouldn't do that to you!". So, I plugged it into the GPS, because we all know, that chick will get you there, right? This flea market went a little something like this: "Our local flea market isn't so much a congregation of artists selling unique crafts but more a random collection of booths featuring knock-off sunglasses; tapestries of dogs playing poker or Jesus shaking hands with Elvis; 10-year-old Avon makeup stored in its original packaging, the cakey aged powder disguised with neon stickers that say "$2, never used." However, among the turquoise bolo ties and $5 Wolex watches." (coined phrase from a fabulous blogger- Kelle Hampton). It was seriously hot in that place! I should have taken the advice of the secretary.
-lunch, hospital, hotel, late night swim
Sunday:
- hospital, City Museum (the last time that I went there, Ashlynn was almost 3 years old, Avery was maybe 9 months, it was in the summer, crowded, hot, and I swore to myself, I would never go back! Guess what? I braved that place again. Everything that I remembered... Was so true. Anyway, the girls had fun. If you ask them their favorite part about the City Museum, they will tell you that it most definitely was the short guy (midget) driving the train. Seriously.... Anyway, I try really hard to teach my children to be good people, caring people, and nice to all walks of life, so this took a bit of explaining. 

~The fun to be had in St. Louis!!! I sure wish that I could upload pictures via the iPad- so funny!

As very short trip home yesterday for a dentist appointment. As it is always nice to sleep in your own bed... I don't enjoy it much, these days. It's so lonely without Daniel. I think about all of the single parents out there (some by choice, some not)-  who make things happen. Although, I'm not really a single mother, I am to an extent. I hope that you understand what I am saying. Daniel is a fine father. With him in the hospital, and very Ill,there are some things that he can't take care of, or help with. Making decisions on my own, doing housework (changing air conditioner filters), taking Ashlynn to 1st grade, by myself (next week, by the way), planning Mia's 1st birthday party, where, I know that he won't be present (still trying to figure out if it is even worth it, for mine and his own sake),  I could go on and one. But, what do I miss the most? The pillow talk, the whispers in bed... Him! Home, isn't the same without him there. 

Going into tomorrow... Geez, where do I begin. There are a lot of emotions. It seems like so long ago,  that brave man, called me from the emergency room, in a hospital bed, and told me that he had cancer. From about day 4 of our journey, we were told that with the aggressiveness of disease, a bone marrow transplant was needed. It was a matter of life or death. We chose life. Sure, it is scary- I am not going to lie. Am I still scared? You bet! August 3rd,  means new opportunities for Daniel, new opportunities for myself, and new opportunities for our family.  Believe me, we are very excited! With his new cells- there is a POSSIBILITY of a cure! I am so glad that there is such a caring person out there, to allow for this to happen. One day, I sure hope that we can meet Daniel's hero. 

Sure, for the next year, Daniel's life will be dramatically different. Another year of "light" chemo therapy treatments. A year full of doctors appointments, lab appointments. Atleast 4 more bone marrow biopsies, a pharmacy full of prescriptions... lots of precautions. We are ready. Daniel is ready. 

Enough rambling for the night. After 4.5 days of Daniel feeling miserable, he is finally feeling somewhat ok. So, I must attend to him! Tonight, I humbly ask for your prayers. Tomorrow, is a big day! We still have not been given an approximate hour that the transplant will occur. I wish I knew, badly. I most likely will update via Facebook, as soon as I am informed. As far as an update, via my blog, maybe tomorrow night, depending on circumstances...Thank you for reading along. Good night, y'all. XOXOKristin