Cheers to November

Let’s get one thing out of the way- please forgive me for not blogging last week. And please forgive me when I say that I am not sure that I want to continue blogging. I sometimes feel like I have nothing to say. Sometimes, I have a hard time starting. But, when it comes down to it, I am not sure I want to end it. So here it goes…

Last week was pretty intense. Daniel was home the entire week for the first time in a long time. Which was nice- extremely nice. Plus, it just so happened that he celebrated a very special birthday on Thursday- his 30^th! Which only means one thing- a surprise party! School added to the mix-, which always tends to make for an interesting week.

Speaking of school… can you believe that I enrolled in my 2^nd semester of classes today? Whew… this semester seriously flew by. You see, I look at nursing school this way: 1 of 4 semesters is almost complete! I finish up my last skills lab of the semester on Thursday. It is kind of a bittersweet thing. More sweet than bitter! I am sure that my fellow classmates can slightly agree.

As I have mentioned before, Halloween, the fall… these are just a few of my favorite things. This year, I sort of dreaded Halloween. Mainly, because I thought that it would be the girls and I. Four of us, not five, because I was sure that Daniel would still be in St. Louis. As it turned out, he was home. Ashlynn was a socialite, Avery not far behind, and Mia, a little heavy on top, clumsy and not wanting to listen to me at all- that is how she rolls. Our Halloween was cut short, due to the quickness that the cold temperatures set in, and the gathering of folks that Daniel most definitely, had no reason to be around (he is still on the immunosuppressant’s). Being in crowds make me nervous. But, what can you do? I can’t keep him in shelter all of the time. It wouldn’t be good for his spirits!

Tomorrow, Daniel heads to St. Louis for some tests. He will be getting labs done,  seeing the Nurse Practitioner, having a pint of blood drawn off of him, and having a bone marrow biopsy… So please keep him in your thoughts as you go about your day. He follows up with Dr. DiPersio on Monday. By then, we should know some preliminary results of the biopsy- not all of them, but some. I am more nervous about this biopsy than I have been about any other. I have no real reason to be. My stomach turns, my shoulders tighten. STAY TUNED. Next week, we will begin to plot our next moves.

We hope. We pray.

Thank you. Each and every one of you.. XOXO Kristin

Fall Break Delivered

Some times I get caught up with people who’s kids are perfectly clean, houses that are immaculate, marriages that are perfect or picture perfect. I wonder why I don’t have that. Or more importantly, that there must be something wrong with me and that is the reason that I don’t have all of that. Please tell me that you do the same thing.

I could lie and tell you that all of those above things- are characteristics of my life- but they aren’t. The truth is, it isn’t the norm for most people.

Today, my cleaning lady came. My house was such a disaster, which, I would normally be too embarrassed to admit. But, I am learning, learning to let the little stuff, like having an immaculate house, go. I promise you, my house is clean- just not kept.

Time… I try not to waste it.

I am quickly learning to be “okay” with it. I except that there are parts of my life, that need a major overhaul. Right now, isn’t the right time. But when the time is right, it will happen. I will get that fresh coat of paint.

Last week, I decided to take a break. It was Fall break with my school schedule. A much needed break. A break from blogging. Nothing permanent or drastic- just a break. It was so fantastic!

I spent some much needed time with my children and husband. School work consumed me a little bit, but I allowed some free time to spend with my children, which included a trip to the zoo. Beautiful, it was. These little girls are growing so fast!

Still waiting for the day when Daniel gets to come home. The rash is much better. His platelets, still not raising the rate that they should. You may be questioning the concern for this. Here it goes: the medical team is not concerned in a huge amount, however, that treatment (the low-dose chemo therapy treatment for the next year, the best treatment for him), can not happen if his platelets do not rise. However, the team believes that the low number is due to the anti-rejection med, the steroids and the treatment for the GVHD rash. All are possible reasons. Other than that, things seem to be going real good. That is what they say!

I met some really fabulous people while Daniel was in the hospital, many of which I have formed friendships with. A very young lady has really had a tough way to go. She was diagnosed over a year ago, had a stem cell transplant around the time of Daniel’s diagnosis, and the cancer returned late summer. She under went a “mini-transplant” after Daniel’s transplant. She has had a rocky road since, but is out of the hospital. Guess what? She sent a letter to her donor and received a letter back and plans on meeting her real soon. I am so excited for her. I can’t wait until it is our turn, to meet Daniel’s donor.

Thank you for believing in me. For offering me the courage that I didn’t have. You make a difference to me. Thank you! XOXO Kristin

On Accountability...

What makes you accountable? For my classmates that read this… I began writing this earlier this week, before our conversation today- swear!

When I look into the eyes of my sweet girls… I think about the future. The “what ifs” in life. There are several “what ifs” that our possible in our life. I try not to go there. I try not to borrow too much more trouble than I already have.

I have said this numerous times… I want my girls to grow up being respectable individuals. I take pride in the way that I am raising my children, leading them in right ways.

Every morning, when I drop Ashlynn off to catch the school bus, she gets out, I give her a hug and a kiss, wish her a good day, and off she goes. There are days like today, where I am in a hurry, and forget those things. On days like today, she slammed the car door, backpack in hand, and started to walk away, but came back and said, “I love you momma”. Same thing goes for Avery. She never misses a chance to give me a great big Avery hug, when I leave her for the day. Mia isn’t quite big enough, yet.  But girl knows how to love on her momma. I love to LOVE BIG. If my girls love BIG like me…

If I done nothing else right in life, and my family operates like this, then I consider myself a success.

Although I get mad at times, wish that I had “me” time, these three faces are what hold me accountable. No one else. So, that is what keeps me going day-to-day. Some days are better than others, and that is how they will always be. I am trying to figure out how to make everything work, which includes making sacrifices at times. I am okay with that. I guess that it is a part of growing up to an extent.

Maybe you are one of those people who has everything figured out, or maybe, your one of those people who is struggling I find myself somewhere in the middle. I feel like I am moving towards better things. Choosing to live my life happily. I hope that you are too. If not, you are really just “short changing” yourself.

On to other news:

Let see… that rash, the GVHD. Daniel’ s physician wanted to try a shot, twice weekly (It’s an experimental thing). Last week, we were still hoping that the insurance company would agree to pay for it. We were told; they have never seen one that would. That’s great- right? Patiently waiting. We fond out last week, Daniel’s insurance company would agree to pay for it, however, only if it was shipped from their pharmacy. His physician wanted to admit him in the hospital on Friday- that way, he could receive it immediately. Only because it could come from the hospital pharmacy. It is generally administered outpatient. Anyway, it amazes me that the insurance company would be wiling to pay $4,000 a day plus the cost of the shot. By the way, that is the going rate of a hospital room at Barnes- 5^th, 6th, or 7^th floor at the Siteman Cancer Center. Dr. DiPersio decided to allow him to come home for the weekend, increase his steroid, and admit him on Monday. He could receive the needed medication, until the medication arrived at the house on Fyler Street. He then could get it-administered outpatient. As it turns out, the rash was somewhat better on Monday at his check-up, and the medical team agreed to wait until the medication arrived in the mail. The delivery took place today, Daniel received the shot, and hopefully, all will be well soon. Fingers crossed. He also has been battling an eye infection, most likely from the GVHD. He met with the eye dr. this week. There has been a change in the eye drops being administered. Hopefully, these will work. If the GVHD does not begin to clear up, there is an alternative treatment that can be done. Photopheresis. Basically, his blood will be run through a machine, and the GVHD will be taken out, and the blood will be put back in. Think Dialysis. Think hospital stays.

Okay, enough of that. We still have no idea when he will be coming home. We have also found out that the drug that controls the whole Philadelphia chromosome- the drug that costs us $8,000 a month. Daniel will have to be on that the rest of his life. BEFORE YOU FREAK OUT, please know that his insurance covers it; we just have to pay for it out of pocket first and wait on the reimbursement. The doctor’s office is trying to help us with assistance. Folks, that is nearly $96,000 a year just for a 12-month supply of pills. CRAZY!

I hope that each and every one of you has had a good week. XOXO Kristin

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