Joining the search...

Many of you have inquired how you might be tested to see if you could be a match for me to possibly be a donor. If you are interested, it's pretty easy. Go to www.marrow.org, and all the instructions there will tell you how to get tested. They will send you a kit, you do a swab inside your cheek and send it back, it's that easy! Thanks for your interest. I will say that you have to be willing to do anyone's bone marrow transplant, not just me. But it is a pretty awesome thing to donate no matter if it's me or someone else, so pray about it for sure. Thanks!

Give me more doc!

So, had a checkup last Friday. My white blood cell count was basically the same as two weeks prior, which didn't please my doctor. So he upped my dosage of Gleevec. We shall see what happens with that. Also, we found out that my brother Chad who had been tested to see if he was a match to be a bone marrow donor if a transplant should become necessary was NOT a match. They are going to start looking at the National bone marrow list, and hopefully will find one there. I had some pain again for the first time since I started taking Gleevec this past weekend, but am feeling better now. I still have some pretty heavy pain meds in case, so those came in handy. Thank you for your continued prayers. They mean so much to me. Also, another cool thing is that a guy who goes to my church in Ft Worth where I have just started regularly attending told me he is a 10 year leukemia survivor. He had a much worse case than I did because he had AML, or acute myeloid leukemia, but we got to talk about his process and healing, and God really showed me alot thru that and encouraged me. It was a blessing to get to talk with him and get his perspective on it all, and realize how blessed I am.

Thank you all so much. God is good!
Luke

Miracles still happen...

Thank you all for your continued prayers and support. I have two amazing pieces of news to share. One is that I am continuing to feel 100% better! I have started all of my jobs and even have been able to do all the activity in classes that I need to-even dancing! The other piece of amazing news is that Novardis, the company that makes Gleevec is paying for 100% of my co-pay!!! Woo-hoo!!! Praise the Lord! This is such a burden that has been lifted financially, emotionally and spiritually, and will make it so much easier to plan and go forward with life. I see the Dr again this Friday, and hopefully will have even more good news to report.

in His Grace and Love,

Luke

Bring it on down brother!

Saw the doc this morning. Gleevec seems to be working! White blood counts are down to 21,000. That's the lowest they've been since I left the hospital in Abilene back in June. When I was in the hospital a couple of weeks ago in Dallas, they were up to 44,000, then when I saw doc last week, they were holding around 33,000, and now in only 1 week of this medication, they're down to 21,000. Things are looking good. Also, no side effects as of yet for the medicene. Pain seems to be going away slowly but surely, and like I said before, it's been so refreshing and nice to walk and sleep and go about the day without feeling like I have to be slow or careful because of the pain. I see the dr again in 2 weeks, so hopefully we will have even more good reports! My brother is getting typed this week or next to be a possible donor. Not sure at this point if a transplant might be necessary or not, but pursuing a donor just in case.

Luke

A Dose of Normalcy...

That's right! My pain is almost gone at this point. Wow-it's truly amazing what a difference it makes. The sun is shining, birds are chirping, no one is cutting me off in traffic...ok, well, no, that's not true, but it is so nice to be able to be free enough to walk around without worry of hurting. At this point, I've completley stopped taking my pain meds, praise the Lord, and am only experiencing some slight left arm pain at a level of a 1 or 2. It's been so nice to sleep thru the night, and feel rested. We are praying that the improvement means that the Gleevec, which I started taking daily last Thursday, is working and that my bloodwork when I go back to the Dr. on Thursday will show that as well. I have, thru the grace of God, been able to keep all of my jobs that I had planned for the fall semester, which is a huge blessing because I was afraid I wouldn't be able to, especially after missing a couple of days being in the hospital recently. But I'm teaching today at my private Christian school job where I'm team teaching a Performing Arts class. Then tomorrow, I will have my first class of dance students, teaching a musical theatre dance class in South Arlington. Then next week I begin my work with Casa Manana, as a teacher for their Live On Stage class on Tues nights, as well as choreographing the musical, Jungle Book for their fall children's show. I'm so excited about all these opportunities and am so gratefuly I was able to keep these jobs.

Thank you again for your prayers and thoughts and comments. The encouragement is overwhelming. It was also nice to be in Abilene this past weekend and see people at First Baptist Church who have been so diligent in their prayers. Thank you so much!

Luke

Insurance came thru!!!.....or did they??

Well, both are true actually. They finally did approve the Gleevec. However, my copay is still extremely high. I have contacted NOVARTIS, who is the company that actually makes the drug, and they have a patient co-pay assistance program. I gave them all of my information today, and they are supposed to get back to me in a few days about how much they could assist me with. Not sure if this is correct, but when the first lady I talked to was giving me the general information on the assistance program, she told me that it was possible to get the drug FREE for a year! Not sure how that all works, but that is definately a huge prayer request, that I could get some or full assistance in paying for the medication. My parents are helping me pay for the drug with the co-pay as is, so at least I am now ON the Gleevec, and hopefully it will be helping my "myloproliferative disease" to go into remission.

Another piece of good news is that I am feeling quite a bit better. Dr. Fay gave me a new pain medication yesterday, and it is actually helping me. So I got to sleep a few hours last night which was nice.

Thank you all for your continued prayer support and comments.

In His Grace,
Luke

Pain vs. insurance companies...

As my blog post suggests, we're still fighting with my insurance company CIGNA, to approve the medicine Dr. Fay prescribed, being the miracle drug that he believes will send my white blood cell count into remission, thus allowing me to feel much much better. By the way, if anyone works for them, I'll be your best friend if you can slip me an approval letter under the table! hehe.

The pain has been pretty unbearable the last couple of days since I got out of the hospital. I look like a 100 year old man who has had hip surgery when I walk-which is pretty entertaining when mom and I were eating at IHOP yesterday and everyone was looking at me like, what is WRONG with that man? He looks so young and healthy. Ha ha-not! I slept probably a total of 4 hours over the last 48 hours, however, God is def using this to get me to pray more! And although it sometimes feels like begging God for mercy, just beginning to talk to the Lord allows my soul to quiet down and me to begin to see His perspective and not my own limited human one.

So we did see Dr. Fay again today...he was expecting me to be bounding up the hallway, already having gotten the Gleevec, and almost cured. But was very upset to find the insurance company had still not approved it. I guess the insurance company would rather pay for a hospital stay than approve this drug. (did I mention how expensive it is? I mean, I wouldn't want to pay it either, but you know, it's kind of their JOB.)

In other humorous news, two funny stories have happened today...

one of them was when mom and I were waiting to see Dr. Fay, his nurse came in to talk to us. She was filling us in on everything SHE had been doing on her part to get this med for me, checking on every sample in the building, etc. Mom got a bit teary-eyed because she understands how much pain I'm in and hates that it's taking this long to get the medication. Julie, in a very compassionate way and most sincerely, grabs a box of what she thought were tissues from a shelf in the dr office, hands them to my mom, and my mom draws out what she thought was a tissue. Then, as mom begins to put the "tissue" to her eyes, she feels the rubber like material, and begins to make out fingers and a thumb to what actually was not a tissue at all, but had been a box of RUBBER GLOVES!!! As soon as Julie, the nurse walked out, mom begins to laugh hysterically, tells me what had happened, and we both were in stitches at that time. (in stitches...hmmm...how did that saying ever earn the meaning of laughing a lot? weird.) Just the image of this sweet nurse in all her compassion giving mom a box of rubber gloves to ease her emotions put us over the edge. :)

-the 2nd one is more of a funny coincidence. So, long story short, my best friend growing up is a guy named Chuck Haddox. I sang in Chuck's wedding 3 years ago, when he married a wonderful woman named Beth Trenz. Beth has a sister that mom knew was a nurse "somewhere in Dallas." So, today, I get called back to the Dr's office out of the waiting room by a very sweet tall blonde woman. She took my weight, blood pressure, temperature as the nurses always do, and brought me into the actual dr's office. She was so sincere and compassionate as she learned of my dealing with this disorder, and that I had only recently learned about it a couple of months ago. She left, and mom said something about her really looking and sounding a lot like Beth, Chuck's wife. I agreed, but neither of us thought much about it. Then mom said she thought Beth's sister was in fact a nurse in the Dallas area, and that wouldn't that be funny if it WAS Beth's sister. She asked Julie (Dr. Fay's personal nurse) about the "blonde woman who was just in here", and Julie said her name was Susan but didn't know much else about her. Ha-so as you can imagine where this story is going, mom called her friend and Chuck's mom, Nancy Haddox (hey Nancy!), and found out that indeed, Beth's sister's name was Susan, and 3 years ago, we were all in the same church building in Cincinatti, under very different circumstances, seeing her sister and my friend get married! Ha-wow. Thank you God for good times and funny circumstances.

On a sad note, I was supposed to fly out to Florida tomorrow to one of my closest friends weddings, who was my roomate in NYC for 2 years, and who I had worked with in Japan at Tokyo Disney. I will not be able to make that trip, but wish Scott and Delores all the best, and thank them so much for understanding these crazy circumstances and being so great about praying for me.

And again, thank you ALL for your incredible support and prayers. I see Jesus' hand working in all of this, and even though I do get frustrated and upset about things not happening faster, I know "He's working everything for the good of those who love Him." (no matter if that "feels" good at this time or not). That's one of the best things about the Lord I think. He knows what is His best for us...not our best for ourselves, but His best, and if we allow Him and continue to choose Him, He will reveal that in us. It might not seem good at the time, especially if we never see the payoff or good, but God is such a big God and true to His Word and has never lied to us, we can BELIEVE His Truth and trust that it truly is all working together for His good.

Ok, enough preaching for today (can I get a hallelujah anyone? Or if you're watching "Diary of a Mad Blackwoman", HALLELURYEH!)

Haha. Thanks for reading this novel and may the Lord bless each of you!

Luke