Luke: "So, Doc, I've got HES? How come they don't have all the things I have and vice versa?" Doc: "Well, you don't just have HES..."

Haha. So yes, I thought when I heard the Dr. say I had HES, that that was ALL I had, however turns out, it's only a part of it. Obviously, HES is extremely complex anyways, but the doc says I also have a myloproliferative disease, as well as a possible variant of CML (chronomyolgeous leukimia), as well as some other stuff too. AAAHHH! :) So basically there are only 200 people in the U.S. that have this certain "diagnosis" (if you can even call it that!).

So, another update...

Long story short, mom and dad have been in and out over the last few weeks to help me get around, driven me to work, and basically just done so much for me and helped me in ways I can't explain. I'm realizing even more now how blessed I am to have incredible parents who love me, support me and are willing to do ANYTHING for me.

The pain levels latley have been extreme. I think finally we've figured out a pain medication that is finally working on an ongoing basis, but the nights are the worst. Mom has had God-given, superwoman strength lately to be able to lift my dead weight legs until dad could get here and help with that. Also, since we're staying with Chad and Holly (my brother and sister-in-law) now, he's also helping me which I'm sure is a welcome break for my mom.

This past Monday, my white blood cell counts were up to 50,000 again, the highest it had been since Abilene, and I was feeling it as well. Doc started me on a new medication, Sprycel, coupled with the Hydrea to hopefully knock those white blood counts down quickly and get the pain down as well. Not sure if its the meds or not, but my counts have come down in the last 3 days. Today they were 34,000. I'm also feeling a bit better too.

Yesterday and today however, my red blood cell counts have been very low, and so I received a blood transfusion yesterday along with the fluids I got, and am actually getting transfused right now again. The doctor just came in and said that I will be coming in every day to the "clinic" at Baylor to do these outpatient fluids, bloodwork and anything else that needs to be done until i'm feeling much better and my counts are hopefully normal. Not sure how long that will be...hopefully we'll get to go home for Thanksgiving. But if not, it'll be ok. God is so good and my family is so incredibly supportive. And you all as my extended family have been so amazing in lifting me up in prayer and my family at this time as well. Thank you so much for your kind words, prayers and comments. I pray God uses this for His glory...because as I've realized so much lately, we must be desperate for Jesus everyday to live this life to the fullest...whether we're in pain or not, whether health issues or not, we must cry out to Him and long for His presence.

I've been forced to do that more and more lately, and it makes me aware of how much I don't do it in normal day to day life. I pray for this to inspire everyone who reads to wake up daily and acknowledge how helpless and weak we are, and how we are in desperate need of a Savior who can rescue us from this crazy life and it's struggles.

May the Lord bless you and keep you,

In His Grace Alone,

Luke Longacre