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